Praise

for the first edition

I Am Not Sick, I Don’t Need Help!
Helping the Seriously Mentally Ill Accept Treatment.

At last we have a volume for those individuals most closely associated with the
mentally ill. In a very readable fashion, Dr. Amador addresses the nature of
patients’ unawareness of their illness and their need for treatment. He also
clearly outlines the relevant research and gives clear prescriptions to help
families and therapists deal with patients’ obliviousness to their condition. I
strongly recommend this to families and therapists of individuals with serious
mental illness.
AARON T. BECK, M.D., Emeritus Professor of Psychiatry, University of
Pennsylvania, Department of Psychiatry

This is the first book to address the elephantine question running roughshod over
families of individuals with schizophrenia and bipolar disorder: Why won’t the
sick person take his/her medicine? Amador, a psychologist who has a brother
with schizophrenia, has pioneered research on poor insight into illness, a.k.a.
anosognosia, for the past decade and is an acknowledged authority on it. He
blends clinical vignettes skillfully with his erudition, and the resulting mix is
both edible and edifying. Most important, Amador provides families and mental
health professionals with a concrete, step-by-step plan to improve awareness of
illness. This book fills a tremendous void in the literature on schizophrenia and
bipolar disorder.
E. FULLER TORREY, M.D., Author of Surviving Schizophrenia

Looking back, the strangest part was not the omnipresent government agents, the
agonizing radiation weapons, or even my own super hero-like capabilities. What
frightens me most is that my manic depression gave me an immovable certainty
that it was the world around me that was convulsing but that my perception and
judgment of it were unaltered. Thinking of this time leaves me frustrated and
embarrassed as well as apprehensive that it might come again. I read Dr.
Amador’s book and felt better. First, he concretely and understandably
establishes that most denials of treatment are but manifestations of the illness
and that it is the illness that is the enemy. Dr. Amador then presents a powerful
game plan for penetrating, or at least circumventing, sickness induced lack of
insight that will maximize the cooperation with treatment of those affected.
When I first became ill, I wish this book had been in the hands of someone who
cared about me.
JONATHAN STANLEY, JD, Assistant Director, Treatment Advocacy Center
and a Consumer diagnosed with Bipolar Disorder

There are several publications that address best practices for clinicians treating
persons with schizophrenia. These are written from the perspective of the
practitioner. There are a few books written from the perspective of the consumer
or of the family member, but these do not incorporate the values of clinical
insights, particularly those reflecting recent research findings. The great value of
“I am Not Sick, I Don’t Need Help” is that it incorporates both the consumer’s
perspective and that of the clinician. It finds common ground, pointing out where
the consumer and his/her clinician can work together in partnership. It is
practical, easy to read, and hopeful. I highly recommend it to anyone interested
in helping those who, like myself, live with the condition we call schizophrenia.
FREDERIC J. FRESE III, Ph.D., Summit County Recovery Project and a
Consumer diagnosed with Schizophrenia

Of the myriad of problems presented by serious mental illness Dr. Amador has
focused on the single most critical factor. Breakthroughs in treatment will not be
effective unless we deal with medication noncompliance and the related issue of
poor insight into illness. Dr. Amador takes this issue on in “I am Not Sick I
Don’t Need Help” and deals with it head-on, providing vital information and
practical advice for both families and therapists of patients with schizophrenia
and bipolar disorder. This book will be immensely helpful to anyone dealing
with the problems of medication noncompliance and poor insight.
MICHAEL FLAUM, M.D., Director of Mental Health, State of Iowa

This is a wonderful book bringing together the personal experiences of a

psychologist and a lay person who have relatives with serious mental illness. Dr.
Amador’s research and clinical experience makes this book a rich source of
information and practical advice. It is one of the salutary characteristics of our
culture that people who experience pain convert that pain into something
productive. People who are victimized by, stressed by, and dismayed by serious
mental illness will find this book enormously helpful. It contains information
about new research and concrete advice that will be of enormous help to both the
families of the seriously mentally ill and to the mental health professionals who
care for them.
HERBERT PARDES, M.D., President, New York-Presbyterian, The University
Hospital of Columbia and Cornell, and past Director of the National Institute of
Mental Health

“I am Not Sick, I Don’t Need Help!” is essential reading material for family
members battling with their mentally ill loved ones about the need for treatment.
Dr. Amador provides an insightful, compassionate, and practical guide for
handling the frustration and guilt that inevitably arises when dealing with a sick
individual who, by virtue of their illness, is completely unaware of the need for
treatment. What makes this book especially poignant is Dr. Amador’s inclusion
of his own personal account of his lifelong struggle with his own brother who
suffers from schizophrenia, as well as his detailed presentations of patient cases.
He does an exceptional job summarizing the compelling science behind poor
insight, or anosognosia, clarifying that the loved one’s lack of insight is not a
product of a psychological defense mechanism, but is a result of the very brain
dysfunction that underlies the illness. Practical tips on how to help a loved one
with poor insight accept treatment or how to proceed with civil commitment, if
necessary, make this book especially useful.
MICHAEL B. FIRST, M.D., Editor, Diagnostic and Statistical Manual of
Mental Disorders, Fourth Edition (DSM-IV)

This is a well-written and must-read practical guide for those facing serious
mental illness in a loved one, friend, or colleague. Delusions and psychotic
thinking are quite beyond our everyday experiences, so it is not surprising that
most people are at a loss about how to approach and obtain help for someone
with serious mental illness. Those with psychosis may not even recognize that
their own behavior and function is disturbed, let alone that they need treatment.
If only the ailment were a stomachache rather than a malady in the part of the
brain that distinguishes normal from abnormal!
DOLORES MALASPINA, M.D., Professor of Psychiatry, Columbia
University College of Physicians and Surgeons and Director, Clinical
Neurobiology in Medical Genetics

Lack of insight in people with schizophrenia and bipolar disorder is the major
cause of many of the worst aspects of their illness, and may be the most
recalcitrant since it is difficult to treat someone who thinks that nothing is
wrong. Dr. Amador has spent the better part of two decades conducting research
on this topic and has been the world’s most influential scientist in this important
area of work. In this book, he prescribes detailed interventions to help families
and therapists deal with lack of insight and the many difficulties it causes people
with major mental illness. Yet Amador is not an academic preaching from an
ivory tower. His poignant personal experiences with people with schizophrenia,
including his brother and close friend, are laced throughout this thoughtful,
moving, and indispensable book. “I am Not Sick, I Don’t Need Help!” is an
essential guide to anyone who knows, loves or treats someone with
schizophrenia or bipolar disorder.
RICHARD KEEFE, PH.D., Professor of Psychology in Psychiatry, Duke
University Medical Center and author of Understanding Schizophrenia

It is uncommon to find books that bring together the latest findings in psychiatry
research with relevant and practical clinical advice. Even less common are those
that do so in a readable and engaging fashion, for both families and mental
health professionals. Dr. Amador accomplishes all of the above in “I am Not
Sick I Don’t Need Help!”
ROBERTO GIL, M.D., Director, Schizophrenia Research Unit at Columbia
University and the New York State Psychiatric Institute.

There is probably no more difficult or more important responsibility for a family

member in our society than meeting the needs of a mentally ill child, sibling or
close relative. Daily life can be a struggle and the future impenetrable with
uncertainty. Dr. Amador has taken up the challenge of guiding the family
member in order to bring a better life to the afflicted patient and the responsible
relatives. The unique combination of sensitivities he brings to this task reflect
both his life experience as a sibling of an afflicted brother and his many years of
broad clinical practice.
Reflecting his own profound empathy and insight, the book is a guide to the
shocked, bewildered and too often hopeless close relative. It is no mere
compendium of generalizations.It is a practical, step-by-step, program for
achieving understanding and even expressing love in a situation where that love
is difficult to convey.
His is a remarkable achievement and a great public service. Many lives of
patients and their loved ones could be enhanced, often immeasurably if copies of
this book were given to the families of every patient who begins to show signs of
psychosis.As people use this book, it will mark the beginning of a sound
remediation and even rehabilitation.
CONNIE LIEBER, President, National Alliance for Research on Schizophrenia
and Depression

I’m Not Sick,I Don’t Need Help! addresses one of the toughest and most
emotional problems in delivering mental health services. Dr. Xavier Amador and
Anna-Lisa Johanson tackle this challenge by drawing ontheir own painful
personalexperience.The book offers a sensitive presentation of a practical,
clinically sound, approach to getting a severely ill personto accept needed
treatment.
Written in a respectful tone, the book provides clear, concrete guidance to
families and professionals.Skillful use of case examples enlivens the text, which
is filled with difficult “real world” situations. The focus throughout is on
building mutual understanding and trust, so involuntary treatment can be
avoided, if possible.
I hope this book will be widely read.It gives us amuch-needed and long overdue
common ground for helping people in crisis.
LAURIE FLYNN, Former Executive Director, National Alliance for the
Mentally Ill (NAMI)

I hope you will be as impressed as I am with this book’s approach to treatment

for persons with serious mental illness. I strongly applaud Dr. Amador for
working out these treatment strategies and for the sage advice he gives for
persons involved in what continues to be one of the most challenging and
perplexing arenas in modern health care.
In this book, Dr. Amador lays out a specific plan of attack that addresses this
difficult problem. It is an effective strategy for finding common ground that can
be used to build trust and cooperation for mutually addressing the problems of
the patient. The justification and description of the “listen-empathize-agree-
partnership” approach rings true to this person who “has been there.”
Particularly valuable is the recommendation that clinicians and relatives not
openly challenge the beliefs of the mentally ill person. Unfortunately such
challenging is still quite common and is frequently justified by the thought that
“you should not buy into the belief system” of a delusional person. Such
thinking among mental health providers is misguided. What is important,
particularly during the initial stages of interaction is that the professional afford
dignity to those in his care. How important it is to communicate respect.
In addition to describing effective strategies for dealing with mentally ill persons
and providing a list of helpful resources, Dr. Amador provides delightful
anecdotes that emphasize his main points and illustrate his suggestions. These
serve as excellent mechanisms for tying his recommendations to the realities of
trying to help mentally ill persons.
FREDERIC J. FRESE III, PH.D., Clinical Assistant Professor of Psychology
in Psychiatry, Northeast Ohio Universities College of Medicine and a Consumer
diagnosed with Schizophrenia
I AM NOT SICK I DON’T NEED HELP!
Copyright © 2010 by Vida Press. All rights reserved.
Printed in the United States of America. No part of this book may be used or
reproduced in any manner whatsoever without written permission except in the
case of brief quotations embodied in critical articles and reviews.
For information address Vida Press L.L.C. 1150 Smith Road, Peconic, New York
11958.

On the web:
www.VidaPress.com
&
www.LEAPInstitute.org

Amador, Xavier, 1959 -

I AM NOT SICK I DON’T NEED HELP! How to Help Someone with Mental
Illness Accept Treatment. / Xavier Amador.

10th Anniversary Edition.

ISBN-13: 978-0-9677189-3-4

© 2010 by Vida Press, L.L.C.

 for
Enrĩque and Lou-Andréa
 Other books by Dr. Xavier Amador:

I’m Right, Your Wrong, Now what?

Break the Impasse and Get What You Need
(Hyperion, 2008)

Break the Bipolar Cycle

(McGraw Hill, 2007)

I’m Not Sick, I Don’t Need Help! 2nd Edition

(Vida Press, 2007)

Insight and Psychosis, 2nd Edition

Awareness of Illness in Schizophrenia and Related Disorders
(Oxford University Press, 2004)

I am Not Sick, I Don’t Need Help!

(Vida Press, 2000)

Being Single in a Couples’ World

(Fireside Trade Edition, 1999)

Being Single in a Couples’ World

(Free Press, 1998)

When Someone You Love is Depressed:

How to Help Without Losing Yourself
(Fireside, trade edition, 1997) When Someone You Love is Depressed:
How to Help Without Losing Yourself
(Free Press, 1996) A portion of the proceeds from the sale of this book are
donated to the National Alliance on Mental Illness To contact Dr. Amador and
for information on his books, LEAP trainings, and speaking schedule see
www.LEAPInstitute.org
 Contents
Foreword by: Pete Earley
Preface to the 10th Anniversary Edition

Introduction

Part I. The Truth about Denial of Illness

1. A Common Problem
2. Staying in the Game
3. The Root of the Problem: New Research on Anosognosia

Part II. How to Help Using LEAP

4. The Right and Wrong Approach

5. Learning to LEAP
6. Listen
7. Empathize
8. Agree
9. Partner

Part III. Staying on Guard and Next Steps

10. Don’t Let Your Guard Down: The problem of poor adherence
11. First Line Treatments
12. Involuntary Treatment
13. How to Do It
14. How to Survive an Involuntary Treatment
15. The Surprise

Part IV. Theory, Research & Practical Advice on LEAP

16. LEAP Theory and Research

17. Psychotherapy for Psychosis?
18. Violence and Mental Illness
19. DSM-V and Anosognosia
20. Henry

Notes
Acknowledgements
Literature Cited
Recommended Readings
Recommended Resources
Quick Start
About the Author
 Foreword
by Pete Earley (2nd Edition)
How would you feel Dad, if someone you loved killed himself?
I was rushing my college age son, Mike, to an emergency room when he
asked me that question. He was seeing secret messages in bumper stickers and
experiencing rapid mood swings. When we reached the hospital, I felt a
tremendous sense of relief. The doctors there would know what to do!
Four hours later, a doctor finally appeared and after briefly questioning
Mike, declared there was nothing he could do to help him. Mike was convinced
that he wasn=t sick and he refused to take anti-psychotic medication.
Because the doctor did not believe Mike was an “imminent danger” either to
himself or others, my son was turned away even though he was clearly
delusional.
During the next forty-eight hours, Mike decompensated. Only another parent
can really understand how agonizing it is to stand by and watch your child slip
further and further into a mental abyss. I tried, of course, to intervene. I told
Mike that his anti-psychotic medicine would help him think more clearly. But he
told me there wasn’t anything wrong with the way he was thinking. I tried to
show him that he was having delusions, but he disagreed. Finally, I begged him
to take his pills. “Please, please, just do it for me!” But he wouldn’t. “I’m not
sick,” he kept repeating. After hours and hours of exhausting conversations, I
demanded that he take his medication or leave the house. That threat only made
the situation worse. Afraid of what might happen to him on the street, I backed
down. The next morning, when Mike caught me spiking his breakfast cereal with
his medicine, he became enraged.
Forty-eight hours later, Mike was in police custody. He had slipped outside
one morning and broken into a house to take a bubble bath because he felt dirty.
Luckily, the homeowners were out-of-town. It took six officers to subdue him.
Mike was charged with two felony crimes.
Uncertain what to do, I contacted the National Alliance on Mental Illness
(NAMI), the nation’s largest, grassroots mental health organization, and a
volunteer there urged me to read Dr. Xavier Amador’s book, I Am Not Sick, I
Don’t Need Help!
 When I did, I was amazed. Just about everything that I had done to help
Mike had been wrong. Rather than calming the situation, my actions had driven
a wedge between Mike and me. I had not Listened to him, not Empathized with
him, certainly not Agreed with him and finally had not formed a Partnership
with him. Those are the four guiding principles behind LEAP, an acronym that
Dr. Amador has coined to help teach parents and others how to better
communicate with their mentally ill loved ones. When I was arguing with Mike,
I had felt frustrated and overwhelmed. In Dr. Amador’s book, I found a simple to
understand blueprint for parents, siblings, children, and friends to follow. While I
was reading Dr. Amador’s book, I also realized I was not alone. Others had faced
the very same situation that I had encountered with Mike.
I discovered that Dr. Amador’s advice came from years of experience as a
clinical psychologist. His academic and professional credentials were
impressive. He had served as a professor of psychiatry at Columbia University,
as director of Research at NAMI, and director of psychology at the New York
State Psychiatric Institute. He had worked as an NBC News consultant, appeared
on countless television news shows, been quoted regularly in the media, and had
been called on by the National Institute of Mental Health, Veteran’s
Administration, and U.S. Justice Department for advice. Dr. Amador also had
served as an expert witness in high-profile cases, including the Theodore
Kaczynski “Unabomber,” trial, the Elizabeth Smart kidnapping, and the Zacarias
Moussaoui “Twentieth Hijacker” case.
But it was another tidbit from Dr. Amador’s background that really caught
my eye. His brother, Enrique, has schizophrenia. This was important to me,
because it meant Dr. Amador not only had professional experience, but also a
personal stake in his research. One of the reasons why he had developed LEAP
was to help him find ways to better understand his own brother.
Eventually, my son was sentenced to two years of probation and during that
period, Mike followed the rules. He attended therapy, participated in group
sessions and took his medication. But several months after Mike’s court imposed
sanctions ended, signs of his illness began to resurface. I was stunned when I
discovered that Mike had stopped taking his medication. Despite everything that
we had gone through, he had, once again, quit taking his pills. My first impulse
was to confront him. How could you do this again? Haven’t you learned
anything? But my wife reminded me of Dr. Amador’s book. Using LEAP, she
was able to work out an agreement that soon had him back on his medication
and into treatment.
In this new edition, Dr. Amador updates his groundbreaking book. He
explains how “unawareness” of a mental illness is a symptom brought on by the
disease. It is not a choice that an ill person makes. He gives practical advice
about how families and doctors can bridge the gap created by the federal Health
Insurance Portability and Accountability Act (HIPAA) that frequently prevents
loved ones from being informed and involved in treatment. He summarizes state
commitment laws, using simple to understand terms to explain the legal
complexities. Since releasing his first book, Dr. Amador has delivered more than
more than 300 lectures and conducted hundreds of LEAP workshops. He has
taken information from those sessions and added it to this edition. These include
model scripts that suggest specific phrases to use and NOT to use. Being able to
refer to these passages is much like having Dr. Amador in your hip pocket.
The needs of every individual who has a mental illness are unique. But
regardless of that person’s specific problems, the basics that Dr. Amador teaches
help readers improve their communication skills, help develop trust, and help
turn combative situations into cooperative ones.
One night while Dr. Amador was autographing books, a man approached
him empty handed. He had left his dog-eared copy at home, he explained, but
had stood in line anyway because he wanted to shake the hand of the doctor who
had, as he put it, “given me my son back.”
I feel the same way.

Pete Earley is the author of Crazy. A Father’s Search through America’s Mental
Health Madness. He is a former investigative journalist for the Washington Post
and the author of several New York Times best-selling books.
 Preface to the 10th Anniversary
Edition
Xavier Amador (2010)
Why write a tenth anniversary edition? Was it because, like many people, I
like round numbers? I remember my tenth birthday like it was yesterday. I was
so proud to turn “10” and I suppose I am proud, or more precisely humbled, that
I Am Not Sick has turned ten years old. This little book, which started out as a
labor of love, continues to grow in its reach to family members, doctors, nurses,
therapists, law enforcement officers and policy-makers. To my surprise it has
been translated into French, Spanish, Hungarian, Chinese and Japanese (more
translations are in the works). As much as I do see the appeal of round numbers,
their symmetry and the ease with which they can be memorized, I did not revise
this book simply because ten years have passed since the publication of the first
edition. I wrote it because ten years of experience and new science have been
acquired and many more people are asking for even more information on the
nature of the problem of poor insight, anosognosia, treatment options and how
they can help someone with mental illness who is convinced there is nothing
wrong with them.
For owners of previous editions you might, at first glance, think the book is
merely one third longer—there are seven new chapters. But as you read you will
discover that previous chapters have all been revised. My goal was to update the
research and to be even more practical and detailed in the advice I give on how
to engage someone with mental illness who does not understand he or she is ill.
You will learn several new LEAP tools—I now call the specific communication
techniques users of LEAP employ “LEAP tools” (you will see why when you
read the first chapter on LEAP). In addition, in this new edition I report on
recent research conducted on LEAP, opportunities for training in LEAP and
about new research that points to the importance of insuring persons with
schizophrenia, related disorders, and bipolar disorder are involved in treatment
and adhering one hundred percent, or as close to that goal as possible, to the
medications prescribed. In this new edition I also make the case for why doctors
should be assessing insight and diagnosing anosognosia, or poor insight,
whenever they assess a patient with schizophrenia, schizoaffective, bipolar or
related disorders. Knowing whether the person believes he or she is ill is critical
to treatment planning.
It was nearly thirty years ago (in 1981) that I first learned how my natural
instinct to confront denial of illness head-on led to disaster. My brother had just
come home after his first hospitalization for schizophrenia. The medicine he had
been given brought him back to reality I knew, but within a day of his getting
home, I found the pills in the garbage can. Naturally, I asked him why he’d
thrown them out.
“I’m okay now. I don’t need it anymore,” he explained.
Since this ran counter to everything he was told in the hospital, I made a
point of reminding him. “But the doctor said you’re probably going to have to
take this medicine for a rest of your life. You can’t stop taking it!”
“He didn’t say that.”
“Sure he did! I was at the family meeting, remember?” I countered.
“No. He said I had to take it while I was in the hospital.”
“Then why did he give you a supply of medicine to take home?” I argued,
trying to prove him wrong.
“That was just in case I got sick again. I’m fine now.”
“No. That’s not what he said.”
“Yes, it is.”
“Why are you being so stubborn? You know I’m right!” I said.
“It’s my business. Leave me alone.”
“When you got sick, it became everyone’s business. And besides, I’m
worried.”
“You don’t have to worry about me. I’m fine.”
“You’re fine now, but you won’t be if you don’t stay on the medicine.”
“That’s not what the doctor said!”
“Then let’s call him and I’ll prove it!”
“I don’t want to talk about it! Just leave me alone,” he said as he walked
away.
With every dose of “reality” I tried to give him, Henry countered with more
denials. And with every go-round we both became angrier and angrier.
I thought he was being stubborn and immature. My accusations and threats
to prove him wrong made him angry and defensive. My natural instinct to
confront his denial was completely ineffective and made things worse. We got
caught in a cycle of more confrontation and denials (what I call the denial
dance), which pushed us farther apart. The end result was always that he walked
away angry. And then he would relapse and end up back in the hospital.
 In 1989, when I first started doing research on the problem of denial there
were fewer than ten studies in the research literature. When the first edition of
this book was published, there were more than one hundred. When the 2nd
edition was published four years ago there were just over two hundred. Today,
there are close to three hundred! The avalanche of new research on the nature of
the problem and how we can best help persons who say “I’m not sick, I don’t
need help!” continues. We have learned a great deal which I will tell you about
in the pages ahead.
One final note, over the last ten years I have given several hundred talks and
workshops on the problem of denial and the solutions offered in this book (i.e.,
LEAP). LEAP seminars have been presented all over the United States, in many
cities in France, Belgium, Australia, New Zealand, the United Kingdon,
Hungary, Portugal, Turkey and Spain.
Because of the demand my colleagues and I started a training and research
institute aptly named “LEAP Institute” (see www.LEAPInstitute.org for
information and free resources). We have learned a lot about what works and
what doesn’t. Over the past decade I have learned much from our experience
with thousands of patients, families and therapists all over the world, and from
the new research. These are the reasons, not the number ten, that I felt a new
edition was needed. I am very excited about how much more practical and
informative this new book is and hope that you will feel the same.
I end here with a quote from my foreword to the first edition: “After my
lecture [about the research on poor insight] I was surrounded at the podium for
nearly two hours speaking with family members who wanted advice and a
greater understanding of why their loved ones refused to accept help. The
yearning of these people to learn more and to talk to someone who understood
their frustration was enlightening. I was also struck by the realization that the
scientific advances with which I was so familiar hadn’t yet reached many of the
people who would benefit most from what has been learned. That is why I wrote
this book.”
This realization, that many clinicians and family members had not yet
learned of the research related to this problem, is nearly as true today as it was
ten years ago. Tens of thousands are now informed, but given the scope of the
problem of poor insight, millions more have not yet benefited from the science
you will read about the pages ahead. My hope is that this book will finally close
that gap between science and practice.
 Introduction
If you are reading I Am Not Sick, I Don’t Need Help! it is probably because
you have a loved one or are treating a patient with serious mental illness who is
in “denial” and, most likely, is not taking the medication he or she needs to
prevent a flare-up of the condition and to recover. Or if he is taking it, he is not
doing so regularly. You’ve tried various strategies that haven’t worked and
you’re seeking information about how you can help him or her to get help.
The first part of this book provides information about the nature and scope of
the problem you are about to tackle. Some of you may be tempted to skip this
section and go directly to the chapters on LEAP (Part II of this book)—a
communication strategy designed to win the trust of persons with mental illness
who lack insight for the purpose of becoming a “friend” whose advice they will
follow (e.g., to accept treatment, supportive housing and other services)—I have
no problem with that and encourage you to do so if your situation is urgent. Or,
if the situation is even more urgent, you may want to turn directly to Part III
where I provide practical guidance about when and how to secure “assisted
treatment” (inpatient or outpatient involuntary treatment). In my mind, skipping
ahead would be an appropriate use of this book. If you do that, however, I
strongly urge you— after things have settled down—to go back and read the
three chapters that make up Part I.
The information in Part I is vital for several reasons. First, it will help you to
understand what the newest research has shown about the causes of what may
seem to you nothing more than pure stubbornness on the part of the person you
are trying to help. Too often, people with these disorders feel that we (I am
speaking both as a therapist and as a family member) are their enemies. From
their perspective we are adversaries and detractors—definitely not allies.
Meanwhile, we scratch our heads and wonder why they seem unable or
unwilling to accept the help we offer. In this context it is not surprising that the
relationship often becomes adversarial. However, once you understand that the
mentally ill person’s refusal to accept treatment typically results from a brain
dysfunction that is beyond his control, you will see why you shouldn’t take it
personally or blame him for what appears to be deliberate denial.
Countless times following lectures I have given to professional and lay
audiences (family members and consumers/ patients), someone will come up and
tell me that knowledge of the new research has helped to alleviate guilt. Just as
often I am told that this information helps to diminish blame and anger directed
toward the mentally ill person who is refusing help. If you are feeling angry and
blaming the person you are trying to help (both common and natural feelings)
you will be much less effective in what you are trying to accomplish, and your
task will be an unhappy adversarial endeavor rather than a positive collaboration.
Just as importantly, however, you will learn why it’s so important for you to
keep trying. The research indicates that the sooner someone receives medication,
the better his prognosis, the less frequently he will be hospitalized, and the
shorter his hospital stays will be. It’s often difficult to maintain your resolve
when you are dealing with someone who wants no part of what you are offering,
so knowing just how vital treatment is will help you to persevere.
Once you know the nature of the problem and why you so urgently need to
address it, you will be better prepared to understand and implement the new
approach to dealing with poor insight and treatment refusal described in the
second part of the book. The techniques you will learn—LEAP—are not only
informed by the research on insight and medication adherence you will already
have read about, but are also based on the results of recent placebo controlled
studies and on my own clinical experience working with patients and families
and supervising other therapists.
I can’t guarantee that LEAP will definitely eliminate medication (and
service) refusal in the person you’re trying to help, but I can promise that if you
faithfully follow the guidelines I give, they will help lower tension, increase trust
and greatly increase the likelihood that the person you are trying to help will
follow your advice. And if my previous experience and the published research
are any indication, chances are very good that you can make a very positive
difference.
During the time you are working on the problem, you may face the difficult
dilemma of countless other family members and therapists: whether or not to
force medication by using the psychiatric commitment laws in your state. Doing
this can sometimes be a vital part of the treatment process, but it is most
effective when it is done in a way that ultimately strengthens your alliance with
the mentally ill person rather than destroying it. The third part of this book
focuses on the question of when to “commit or not commit” someone to hospital
or outpatient treatment 1 against his or her will. You will learn not only the nuts
and bolts of how to seek commitment to the hospital, but also how to cope with
the difficult feelings this kind of intervention raises for everyone involved. My
main goal is to show you how to deal with the accusations of betrayal you will
likely encounter and the guilt you may feel, and, most importantly, how to use
the commitment itself to build trust and a sense of teamwork with the very
person you forced into treatment.
Too often inpatient treatment is crisis-driven and, hence, short-sighted. You
can, however, build upon the trust and gains you have achieved after the person
is discharged from the hospital, and I’ll be providing you with strategies for
doing just that.
Finally, Part IV of the book ties it all together. You learn, in a brief chapter,
the theoretical and scientific basis of LEAP, about other forms of psychotherapy
that have been found to be effective in lowering symptoms and how the research
argues strongly for a revision of how we diagnosis schizophrenia, bipolar
disorder and related illness. In short, I argue that we must assess and document
whether the person has awareness of his or her illness so we can design a
treatment plan that makes sense (LEAP or Motivational Interviewing rather than
asking them to fill a prescription they are certain they do not need).
In the last chapter, I tell you about Henry’s death—more accurately I tell you
about his life and his relationships with his girlfriend, friends, case worker and
with his younger brother— me. My intention is for you to draw inspiration and
motivation from this chapter. LEAP saved our relationship and gave us many
years of joy and hope. In this chapter I hope to share with you something about
Henry’s remarkable selflessness.
The final chapter is a concise summary of all the major interventions
described in the book. It is quite literally a LEAP cheat-sheet in that it will help
you to easily remember the essential tools to convince someone in “denial” to
accept treatment and services and more importantly, to accept your friendship
and support.
Finally, I encourage all family members to investigate and become involved
with one of the family advocacy groups and consumer organizations I list in the
Resources section (e.g., NAMI). There are many reasons to do so, not the least
of which is to feel less alone and more supported in your quest to better the life
of your mentally ill relative. These organizations will also help you to feel less
ashamed and embarrassed about having a mentally ill person in your family.
These feelings are unwarranted and will only hinder you in your attempts to help
your loved one.
For too many years I was ashamed about my brother, who has schizophrenia.
Despite knowing that he suffered from a brain disorder and that I had nothing to
feel ashamed about, I avoided such organizations and kept his illness a secret
from my colleagues. It was only after talking with people like myself that I was
able to stop feeling ashamed. Because of my own experience, I would certainly
understand if you don’t feel that you are ready to attend any kind of meeting or
conference about mental illness. It is ironic and sad that the instinct not to talk
about family problems keeps many of us from receiving the support and
information we need to solve those problems. However, you can benefit from
such organizations even if you still feel hesitant about getting involved. You
don’t have to attend a single meeting to learn from their websites or request
other literature offered by these groups. I have learned much from these
organizations and have found great comfort in knowing not only that there are
many other families like mine but also that there are forces at work to change
mental health laws, fund research, and improve treatments.
For therapists who read this book, I aim to give you hope that you can reach
your patients/clients with serious mental illness who don’t think they’re ill and
refuse your help. Whether you are a mental health professional or a family
member, this book will help to dispel the despair that sometimes makes you want
to turn your head and look the other way. It will give you renewed hope that you
can make a big difference.
 Part I
The Truth about
Denial of Illness
Knowledge is happiness, because to have knowledge — broad, deep
knowledge — is to know true ends from false, and lofty things from low.
Helen Keller Whilst part of what we perceive comes through our senses from
the object before us, another part (and it may be the larger part) always comes
from our own mind.
The fact that the brain is the one immediate bodily condition of the mental
operations is indeed so universally admitted nowadays that I need spend no
more time in illustrating it, but will simply postulate it and pass on.
William James
The Principles of Psychology,
Volume I, 1890, Foreword
 1
A Common Problem
“I am not sick! I don’t need help!”
Henry Amador, as said to the author.

“My brother is so ill. He’s refused to take the medication. We’ve tried to talk
him into it,” said April Callahan, sister of Russell Weston, who is charged with
having shot two guards at the U.S. Capitol. “He just wouldn’t do it,” added his
mother, Arbah Weston. “What are we going to do with a 41-year-old man? You
can’t throw him in the car.”
AP wire July 26, 1998.

“There was [this] sick person [who] broke into David Letterman’s house.
That was her illness. She had an aversion to treatment and to admitting that she
had a problem.”
Anna-Lisa Johanson, as told to the author.

“My mother wanted us to camp out on his land and convince him to get help.
As far as he was concerned we had the problem, not him.”
David Kaczynski, brother of the confessed “Unabomber” Ted
Kaczynski, as told to the author.

“After Jeff’s last manic episode I thought he’d finally realized he needed to
stay on the medicine. But last week he stopped taking his lithium again. He says
he’s better now and doesn’t need it anymore!”
Julia, as told to the author.

Whether they realize it or not, everyone is aware of the problem, if only from the
newspaper headlines: Many people with mental illness are in denial that they are
ill and, therefore, refuse treatment. Those of us who are related to such persons
reluctantly see ourselves and our loved ones reflected in those headlines. Julia’s
predicament, which was never the focus of any news story, highlights a problem
encountered by millions of U.S. families, and tens of millions more from around
the world, whose names never appear in the media. It is, in fact, a far more
common scenario than those involving violence and/ or suicide, which are, of
course, the ones we read about. But just like the more infamous examples cited
above, Julia’s loved one does not think he is ill and does not want to take
medication. His denial and refusal may not lead to infamy, but they will almost
certainly lead to worsening illness, lost opportunities, and ruined relationships
with loved ones.
Many people with bipolar disorder and schizophrenia think of their illness as
something that comes and goes. For a short time, Jeff acknowledged he had an
illness and took the medication prescribed for it. But after things got better, he
decided he didn’t need to keep taking the lithium. For Jeff, lithium was medicine
to treat his mental illness in the same way that antibiotics are medicines for an
infection. When the bottle is empty, you are cured. In reality, the better
comparison is that lithium is for manic depression what insulin is for diabetes, a
chemical that needs to be taken every day to prevent a relapse or even death.
Because both bipolar disorder and schizophrenia are so lethal (about 10% to
15% of all suffers die from the illness via suicide), this analogy is particularly
apt.
Even though Jeff took his medication only sporadically, he was still a step
ahead of the game, because many people with serious mental illness 2 have never
acknowledged that they’re ill and refuse to take medication even once.
David Kaczynski, the brother of Theodore Kaczynski, the “Unabomber,” told
me that even though his brother had terrorized the nation for two decades, the
Kaczynski family had received countless letters expressing support,
understanding, and condolences from people who were related to someone with
a serious mental illness. Like David and his mother, they had experienced the
helplessness and heartache associated with caring for someone who was in
denial about having a mental illness. In fact, I was one of those letter writers.
Like the others, I saw my own situation reflected in that of the Kaczynski family.
I’ve just been luckier because my brother Henry, like the overwhelming majority
of people with these illnesses, was never violent.
Far more common than the tragedies that make the headlines are those that
test the bonds of family and the moral resolve of the therapists who are entrusted
with the care of our loved ones. When once again a bottle of medication is found
in the trash or stuffed under a mattress, when we are told to mind our own
business, that we are the only one who has a problem, when yet another doctor’s
appointment is missed, we all come one step closer to throwing our hands up in
despair. Sometimes, whether or not we walk away, our loved ones 3 do. They
disappear for hours, days, weeks, and even years. My brother Henry was in the
habit of disappearing for days and even hitch-hiking cross country. Some make
the headlines anonymously when they join the ranks of the homeless or
incarcerated. That used to be my biggest fear.
There are approximately six million people in the United States with serious
mental illnesses, and literally hundreds of millions more worldwide. The results
of recent studies indicate unequivocally that about 50% of all people with these
disorders don’t believe they’re ill and refuse to take the medications that have
been prescribed for them. That amounts to three million seriously mentally ill
Americans who don’t realize they’re ill. You probably already had some idea of
how widespread these illnesses are, but did you ever stop and think about how
many family members there are? If we count only the parents of these
individuals, there are twice that number of family members! Add just one sibling
or offspring, and the number becomes truly staggering. Now here’s the real
headline: More than ten million Americans have a close relative with mental
illness who is in denial and refusing treatment.

Most studies find that about one half of the people with
serious mental illness don’t take their medication. The
most common reason is poor insight into illness.
In the past twenty years, there has been an explosion of research on the
problem of poor insight. Among the earlier studies during this period was one
conducted by my colleagues and I. We studied more than 400 patients with
psychotic disorders from all over the United States. This “field trial” was
conducted as part of our participation in the revision of the Diagnostic and
Statistical Manual of Mental Disorders (DSM) conducted by the American
Psychiatric Association. We measured a wide range of symptoms, including
insight into various aspects of the illness and treatment. What we hoped to learn
was how frequently people with a mental disorder did not realize they were ill.
Our results showed that nearly 60% of the patients with schizophrenia, about
25% of those with schizoaffective disorder, and nearly 50% of subjects with
manic depression were unaware of being ill. This main finding has been
replicated more than one hundred times in the research literature and is so
widely accepted in the field nowadays that, as of the year 2000, the standard
diagnostic manual used by all mental health professionals in the U.S. states that,
“A majority of individuals with schizophrenia have poor insight into the fact that
they have a psychotic illness….” Page, 304 (Diagnostic and Statistical Manual
of Mental Disorders, IV-TR, American Psychiatric Association Press, 2000).
In other words, when the patients enrolled in our study were asked whether
they had any mental, psychiatric, or emotional problems, about half answered
“no.” Usually the “no” was emphatic and followed by sometimes bizarre
explanations as to why they were inpatients on a psychiatric ward. Explanations
ranged from “because my parents brought me here” to stranger beliefs such as,
“I’m just here for a general physical.” Whereas the majority of patients with
depression and anxiety disorders actively seek treatment because they feel bad
and want help, these individuals, by contrast, were unaware of having a serious
mental illness. Unlike people with depression and anxiety, they never
complained about “symptoms” because they didn’t have any. Indeed, their main
complaint was usually feeling victimized by their family, friends, and doctors
who were pressuring them to accept treatment for an illness they didn’t have!

We were surprised to learn that the problems with

illness awareness did not stop at denial of a diagnosis.
The unawareness we were documenting was severe and
pervasive.
In addition, a significant percentage of those we studied were also unaware
of the various signs of the illness they “suffered” from, despite the fact that
everyone around them could readily recognize the symptoms (e.g., thought
disorder, mania, hallucinations, etc.). The pattern of pervasive unawareness of
symptoms shown in the figure below was also found in all the other psychotic
disorder patients we studied (except those with psychotic depression). This was
the first time anyone had looked at this issue and so we were surprised to learn
that the problems with illness awareness did not stop at denial of a diagnosis.
The unawareness we were documenting was severe and pervasive (i.e., patients
were unaware of their diagnosis and unable to see even the most obvious signs
and symptoms of their illness).
 To illustrate just how extreme the unawareness can be, let’s look at Matt,
who is a former patient of mine. As you read Matt’s story, however, I want you
to keep in mind that, in the chapters that follow, you’ll also be learning how I
was able to help him develop insight into how medication could help him, even
though he did not believe he had a mental illness! Not surprisingly, as he was
able to do that, the endless stream of conflicts with his family over his refusal to
stay in treatment also came to an end.

Matt
At the time I met him, Matt was 26 years old, single, and living with his
parents. He had been diagnosed with schizoaffective disorder six years before,
when he first began to experience grandiose and paranoid delusions (thinking he
was a special messenger from God and knew the President of the U.S.A.
personally, and worrying that the CIA was trying to kill him). He had
disorganized speech and bizarre behaviors (wearing broken earphones that had
been wrapped in aluminum foil). He was hearing voices. Although Matt was
remarkably unconcerned about his obvious signs of mental illness, they gravely
troubled his family, friends, and even his neighbors, who had to endure his loud
speeches. He had been hospitalized on four occasions since he first became ill.
At the time of the interview you are about to read, Matt had voluntarily
signed himself into the Schizophrenia Research Ward at Columbia University in
New York City, where I was the Science Director. He came to us from a city
hospital where he had been taken involuntarily and admitted to the psychiatric
ward from the emergency room because his mother had called 911. Although the
exact length of time is uncertain, Matt had stopped taking his medications at
least six weeks before his mother’s 911 call. That night, the paranoia that had
been brewing for days boiled over. Matt began to scream at his mother, accusing
her of interfering with his mission from God, which, he believed, was to be His
special messenger to the President. His speech was disorganized. He was hearing
voices. For several days he had been frantically writing letters to the President
and trying to place phone calls to the White House. More frightening to his
mother, however, he was hearing God’s voice telling him to lock her in the
closet!
By the time he arrived at Columbia, Matt had been receiving medication for
one month. When I interviewed him, nearly all of his symptoms, except the
delusions, had shown significant improvement. Although he still believed he was
God’s messenger and that the CIA was trying to kill him, he felt less urgency
about these ideas and was less worried about his safety. In fact, despite his
obviously poor insight into the illness, he was about to be discharged to his
parents’ home with a referral to an outpatient treatment program. I started the
interview by asking Matt to tell me how he had come to be in the hospital.
“I think it was… I don’t know the exact terms. It wasn’t identified to me as
of yet. I think they brought me here for a general physical. They wanted to know
was I drinking, had I been smoking. I told the police that there wasn’t any
drinking, no smoking. It was just a mild argument we had and I believe that my
mother had more seniority over what was going on. So they took me to the clinic
to have the doctor make the determination of how well off I am.”
Although Matt’s speech was somewhat disorganized and a touch
idiosyncratic, I caught the gist of what he was trying to tell me and asked, “So,
when you were having an argument with your mother someone called the
police.” He nodded. “Was it your mother?”
“I think so.”
“Why did your mother call the police?”
“I don’t know. She wanted me to go to the hospital.”
“Why did your mother want you to come to the hospital?”
“She said she didn’t really want me to go to the hospital in the event that an
argument like that took place, because we were discussing my use of the
telephone.”
“I am a little confused by what you just said.” I admitted “Why did she want
you to go to a hospital?”
“We were arguing and I think she thought I was sick and needed to be
checked out.”
“Were you sick?”
“No. We were just arguing.”
“So the police took you to the hospital.”
“That’s right.”
“Why did the people at the hospital admit you?”
“They didn’t say. A real friendly guy was there. He said, ‘Don’t worry you’re
going to be here for a while and I’d like you to get your thoughts together,’ and
I’ve been in the hospital ever since.”
“Yes. But that was in the emergency room. What kind of a ward did you go
to?”
“I went to a psychiatric ward upstairs. They removed me of my clothes and
they told me I was going to stay there for a while.”
“But why a psychiatric ward?”
“I think that’s all they have available now because of the heavy drug and
alcohol use. They may not be receiving aid for a general check-up clinic.”
“Matt, now I am confused. Are you saying the doctors at the City hospital
admitted you to a psychiatric ward for a general physical?”
“That’s right,” he answered, as if there were nothing unusual or upsetting
about his perception of his circumstance.
“So, do you see yourself as someone who didn’t need to be in a psychiatric
ward?” I paused and then added, “Do you see yourself as someone without
psychiatric or emotional problems of any sort?”
“That’s right. But they put me through the emotional tests because of the
two-party system. 4 They asked me to cooperate. So I’ve been pretty much
cooperating. Some of it is against my will but I can cooperate.”
“You didn’t want to stay. Is that right?”
“Right.”
“Why did you stay?”
“I had to because of the judge. He committed me for a month.”
“But after the month was up you decided to come here, to the Schizophrenia
Research Ward. Yes?”
“Right.”
“But you feel there is nothing wrong with you?”
“That’s right. My mother wanted me to come, but there’s nothing wrong with
me.”
To say that Matt had poor insight into his illness is an understatement. Nor
does it do justice to the strangeness of the beliefs he had about what was
happening to him. Matt believed that police officers had restrained him and
taken him to the hospital at the request of his mother simply because she had
more seniority than he. He also believed that an emergency room physician had
admitted him to a psychiatric ward for one month simply to get a “general
physical.” And what can we make of the blasé attitude he had while describing
these terrible injustices? Handcuffed by the police, taken to a hospital and
incarcerated against his will for a month and he didn’t threaten lawsuits or
scream bloody murder? Many patients with these illnesses do exactly that, while
others have the remarkable lack of distress that Matt showed.
I should make clear the fact that Matt had an average IQ. This was not an
issue of low intelligence. So then, what is going on here? Is it that Matt was
embarrassed by his mental illness and didn’t want to reveal the truth to me?
That’s possible, but if such were the case, wouldn’t a less bizarre explanation
have been more convincing? More important, however, Matt knew that I was
quite well aware of all the details related to his hospitalization. I was, after all,
the doctor assigned to his care!
As you may already have guessed, Matt was also unaware that the voices he
heard were unusual. He accepted them as if they were nothing out of the
ordinary and certainly nothing to be concerned about.
Imagine if you suddenly started hearing voices when no one was in the room.
What would you do? Very likely you would be worried, and if the hallucinations
recurred, you would rush to a doctor. That’s what most people would do. I know.
I have worked in neurological clinics with such people. Sometimes
hallucinations are among the first symptoms of a brain tumor. But why do some
people worry when they hallucinate and others don’t? Is it simply denial? Is it
that some people are more able to accept that they have problems while others
are too frightened, proud, or stubborn? Or is there some other explanation?

At this level, poor insight is clearly another symptom

of the disorder, and has nothing to do with being
defensive or stubborn.
In fact, Matt was not in denial. Instead, our research and that of other clinical
scientists tells us that Matt had at least one more symptom that had not been
helped by the medicine he was given. His bizarre explanations for why he was in
a psychiatric hospital (for a general physical and because all the other wards
were filled with drug-addicted patients) and his failure to realize that he was ill
and could benefit from medicine, were not stemming from denial or
pridefulness. Nor did they have anything to do with being defensive or stubborn.
Rather, his poor insight into having an illness and into the benefits of treatment
was clearly another symptom of the disorder itself. Indeed, the research you will
read about in Chapter 3 explains that this type of poor insight is more readily
understood as one of the neurocognitive deficits, or symptoms of a brain
dysfunction, that are commonly caused by these disorders. This is very
important information because only when you understand the causes of poor
insight can you be effective at dealing with the refusal to take medication that it
creates.
 2
Staying in the Game
“Far better is it to dare mighty things, to win glorious triumphs, even though
checkered by failure, than to take up ranks with those poor spirits who neither
enjoy much nor suffer much, for they live in that grey twilight that knows neither
victory nor defeat.”
Theodore Roosevelt

I wouldn’t blame you if you were sometimes tempted to let the problem slide.
Whether you are family, friend, or therapist, eventually you get tired of being
told, “There’s nothing wrong with me, I don’t need help.” Often we feel so
helpless.
Certainly when a mentally ill family member is stable and things are
generally going well, it’s easy to ignore the problems of poor insight and
medication adherence. During those times, we’re tempted to sit back and wait
for the next crisis to force the issue, or to hope (our own form of denial) that the
disease really has gone away. It’s always much easier to pretend the situation is
not as bad as it appears, because facing the reality of the illness can feel
intimidating and hopeless.
Even if we know a mentally ill family member has stopped taking her
medication, if things are calm we can’t help wanting to back off a little. This is
especially true when faced with personal accusations. For example, Vicky, a
forty-five-year-old mother of two with manic depression told her worried
husband, “I’m not sick anymore. I am not the one with the problem; you’re the
one with the problem! Get off my back and stop trying to control me!” And if we
suspect but don’t know for sure that a loved one has been throwing out
medications, we often back off because we don’t want a negative confrontation
to weaken whatever trust we’ve managed to build up. Later, I will explain that
you don’t have to back off and what you can do to build the kind of trust that
will allow you to persuade a loved one to stay in treatment. But first I need to
address the myth that in cases of serious mental illness it is sometimes better to
“let sleeping dogs lie.”
 As Russell Weston’s mother remarked in an interview after her son shot and
killed two U.S. Capitol Police Officers, “What are we going to do with a 41-
year-old man? You can’t throw him in the car” and drive him to the doctor. I
wouldn’t be surprised if, after the fact, she and her husband wished they had at
least tried to do exactly that, or that they’d committed their son to a hospital
without his consent. But these things are much easier said than done. In Part III
of this book, you will learn about forced treatment (aka assisted treatment). Still,
the decision to commit someone is very personal, much like your choice to read
this book and learn how to deal with denial and refusal to accept treatment. To
attack the problem, you must have hope that your efforts will make a difference.
Without that element of hope, it’s much easier just to let events unfold as they
may. Who hasn’t thought that, sooner or later, another hospitalization would end
the current crisis. And, when there is no crisis, the temptation to “let sleeping
dogs lie” is even greater.

Why We Can’t Let Sleeping Dogs Lie

It has always been obvious that consistent supervision and treatment help to
prevent suicide, violence, homelessness, and reckless behaviors. What had not
been clear until recently, however, is the very positive effect that early and
consistent treatment has on the course of the illness and the hope of recovery. In
addition, recent studies make it clear that focusing on improving particular
aspects of insight while ignoring others is vital. Understanding this research will
help you to make an informed decision about what to do. If you decide to tackle
the problem of poor insight and make facilitating consistent involvement in
treatment your goal, the following information will help you to keep your
resolve.

Research shows that getting seriously mentally ill

persons into treatment early, and keeping them there, is
very important.
According to the new research, whenever someone with serious mental
illness has another episode, the long-term prognosis worsens. Some scientists
have gone so far as to argue that psychotic episodes 5 are toxic to the brain. The
idea is that brain cells are altered or die during and immediately following an
episode of psychosis. As yet there is no definitive evidence to corroborate this
idea, but there is a good deal of indirect support coming from long-term studies
of the seriously mentally ill.
In one landmark study conducted at the Hillside Hospital in Queens, New
York, researchers found that those individuals with schizophrenia who received
treatment early and consistently had much better outcomes. The results of the
study indicate that when antipsychotic drugs are given shortly after the illness
first emerges, and subsequent psychotic episodes are treated quickly to shorten
their duration, future response to treatment and prognosis is greatly improved.
Similar results were found in a follow-up study involving 276 young,
seriously mentally ill persons. The researchers studied these patients during an
episode of psychosis and then stayed in contact with them for up to seven-and-
one-half years. The subjects who had more psychotic episodes during the early
stages of the study did much worse years later. Once again, the results strongly
suggest that by limiting the number of full-blown episodes of psychosis and
intervening early whenever the illness does flare up, patients remain higher
functioning and less ill later in life.
Finally, in a fifteen-year follow-up study of 82 patients with schizophrenia,
researchers found that delays in mental-health treatment and longer periods of
psychosis led to a worse prognosis over the long run. This study is especially
informative because patients were entered into the research during their very
first episode of illness.
The studies just described are but a few examples of the growing body of
evidence supporting the efficacy of early intervention for patients with
schizophrenia who refuse to take medication. Furthermore, research indicates
that the same holds true for other serious mental illnesses including clinical
depression with or without psychosis.
In the book When Someone You Love is Depressed: How to help your loved
one without losing yourself, my co-author, Dr. Laura Rosen, and I review the
research on treatment of depression. Most studies find that people with untreated
episodes of clinical depression (i.e., those who “ride the depression out”) have a
much worse course of illness and more frequent bouts of depression later in life.
Other studies show that people with bipolar disorder (manic depression) also
do worse when episodes of illness are not treated quickly and effectively. A more
thorough description of this important research can be found in the first chapter
of Out of the Shadows: Confronting America’s Mental Illness Crisis by Dr. E.
Fuller Torrey. Among the reasons Dr. Torrey cites for getting the seriously
mentally ill medical attention are the following statistics:
About 3 million Americans have untreated severe mental illness
 150,000 of them are homeless
159,000 are incarcerated for crimes committed while unmedicated

Dr. Torrey argues that homelessness, incarceration, episodes of violence, and

premature death are not necessary because we know what to do but fail to do it
for economic, legal, and ideological reasons. In particular, he cites our hesitation
as a society to infringe on the individual rights and freedoms of our fellow
citizens as a major obstacle to providing the seriously mentally ill with the
medical treatment they need. The issue he takes on is largely beyond the scope
of this book, but the case he makes for getting people with serious mental illness
into treatment and for finding ways to help them become active participants in
their own care is directly relevant. I encourage you to read his book, especially
if, by the end of this chapter, you still have doubts about the tremendously
positive impact you will have when you help someone with serious mental
illness accept treatment.

We must address the twin problems of poor insight and

medication refusal if we want our loved one to have the
best possible chance of recovery.
What the three studies described above make clear is that when we ignore
the problem it not only doesn’t go away, it gets worse. We must address the twin
problems of poor insight and medication refusal if we want our loved one to
have the best possible chance of recovery. In many ways, medication refusal can
be seen as a symptom of the underlying problem of poor insight. The good news
is that scientists have learned a lot in recent years about the nature and causes of
poor insight in serious mental disorders. And the findings themselves suggest
specific methods for dealing with the problem. And, unlike some advances in
research, this is information you can put to use right now.

Myths and Facts about Insight

The best place to begin is to dispel some of the myths that have been
revealed by recent research. One of the most common is that having poor insight
is usually a good thing. Many times at clinical conferences a well meaning
mental health professional will say, “No wonder he’s in denial. If he had insight
he might kill himself!” I, too, used to think this way. However, the new research
shows that insight is usually a very good thing, but, like most good things, only
in moderation. In other words, insight into some aspects of the illness is usually
beneficial, while other types of insight can sometimes be detrimental.

Research shows that awareness of the positive effects

of medication can be more important to medication
adherence than insight into the illness.
In 1991, my colleagues at Columbia University and I published a paper in
the National Institute of Mental Health’s journal Schizophrenia Bulletin in which
we proposed several guidelines for researchers interested in studying insight.
The first guideline was that insight should be measured in all its complexity.
When I use the term “insight” I am referring to much more than whether or not a
mentally ill person can say, “Yes, I am ill.” There are various things into which
one can have insight, and some types of awareness are more vital to recovery
than others. For example, a person can have insight into the fact that
antipsychotic medication helps him to function in society without necessarily
agreeing that he’s mentally ill. Research shows that awareness of the positive
effects of medication can be more important to medication adherence than
insight into illness more generally. I have seen patients who are aware of some of
their symptoms while unaware that the voices they alone hear are a sign of
illness. Others will say they’re ill but don’t believe they gain any benefit from
taking medication despite objective evidence to the contrary. The guidelines we
proposed more than ten years ago are now widely accepted by the scientific
community and the pace of research into the problem of poor insight has
increased dramatically.
It is also important to recognize that insight is not an all-or-nothing
phenomenon; some people have complete insight into every aspect of their
illness while others have only a glimmer. For example, Vicky had this to say
when I interviewed her in the hospital shortly after her admission to receive
treatment for a manic episode.

“I am emotionally unstable. I know I lose it sometimes. I get too

grandiose and I have to be careful when I get on a roll. But that’s just
because I am creative.”
“Is that what your family thinks?” I asked, knowing that her husband
had practically dragged her into the hospital.
 “My family thinks I’m a manic depressive and need to take lithium.”
“What do you think?”
“It’s possible that I do, but I don’t know.”

Even Matt showed a little bit of insight during the interview excerpted above
when he told me, “Sometimes I get really paranoid. It’s my nerves.”
A glimmer of insight is an open door to developing more.
Regardless of which aspects of insight are being measured, most studies find
that the more aware a seriously mentally ill person is of his illness and of the
benefits of treatment, the better the prognosis. Patients with better insight have
shorter periods in a hospital and have fewer hospitalizations overall. No one
knows for sure why this is the case, but it’s easy to imagine, especially in light of
studies showing that various kinds of insight into illness promote adherence to
treatment. In the work conducted at our research center, we found that awareness
of the beneficial effects of medication is one of the best predictors of adherence
to medication. If you would like more details about these studies, have a look at
the recommended books and research literature cited at the back of this book.
Many people believe that side effects—not lack of insight— are the most
important reason so many people refuse to take their medication. As it turns out,
side-effects play a very small role in treatment refusal while poor insight is the
biggest predictor of who will refuse to take medicine. This research finding has
been replicated many times over. Side-effects are important, but their role in
poor adherence is over-estimated. I believe this has happened because so many
people with poor insight give up trying to convince their doctors and loved ones
that they are not sick and instead talk about side-effects because they know that
will be listened to. In a way, they do the reverse of what I will teach you in Part
II of this book. Mentally ill persons with poor insight learn to speak the doctor’s
language and focus on those things the doctors (and, by extension, relatives)
want to talk about.
Other forms of treatment adherence are similarly affected by poor insight.
For example, Dr. Paul Lysaker and Dr. Morris Bell of Yale University evaluated
patients when stabilized and enrolled in an outpatient, work-rehabilitation
program. Those with schizophrenia and schizoaffective disorder who lacked
insight had very poor adherence to the psychosocial treatments (day hospital
programs, occupational therapy, etc.) in which they had agreed to participate,
despite a stated desire to work. The researchers concluded that individuals with
poor insight are likely to have more problems remaining in a course of treatment
regardless of whether it involves drugs or psychotherapy.
Another myth is that the sicker one is, the worse the insight. Actually, most
studies find that this is not true. If left unattended, the level of insight is
generally stable in most patients. Patients with poor insight while in crisis
generally have lower levels of insight even when stable. Whether their
symptoms are under control or not, they persist in the belief that they really don’t
need medication. They may acknowledge that they were sick in the past, but not
now. If you are reading this book, it’s likely the person you are concerned about
fits this category.

I am hopeful that as the scientific community continues

to turn its attention to this very serious problem, drug
treatments for poor insight will improve.
In a study conducted by Dr. Joseph McEvoy and his colleagues at Duke
University, patients with schizophrenia were followed from two-and-a-half to
three-and-a-half years after discharge from the hospital. Although symptoms of
psychosis improved in nearly all the patients over the course of their
hospitalization, those who had been involuntarily committed did not show any
improvement in level of insight into the illness. Furthermore, the low level of
insight persisted throughout the follow-up period. Not surprisingly, these same
patients were more likely to be involuntarily committed over the course of
follow-up. The authors concluded that an inability to see oneself as ill seems to
be a persistent trait in some patients with schizophrenia, and one that leads to
commitment.
I agree with Dr. McEvoy. I have reviewed the literature, and most studies,
with only a handful of exceptions, concur. However, this does not mean we
should give up hope that medication may help with insight. There is some new
evidence, which I will tell you about in Chapter 10, that is promising and bears
further investigation. I am hopeful that as the scientific community continues to
turn its attention to this very serious problem, drug treatments for poor insight
will improve. The last myth proved false by the research concerns the idea that
insight into illness when one is seriously mentally ill almost always leads to
demoralization, depression, and suicidal thoughts. Suicide is a very serious
problem in both depression and schizophrenia. Estimates are that as many as one
out of every ten persons with schizophrenia will die from suicide. Like most
clinicians, I was taught that poor insight in patients with chronic mental illness,
though problematic for treatment adherence, might be a godsend with respect to
suicide prevention. The assumption is that patients who don’t believe that
they’re ill are less likely to be depressed and suicidal. Alternatively, those
patients who recognize and acknowledge the illness will be more suicidal. In
fact, in a study my colleagues and I conducted, we found that, contrary to
clinical lore, awareness of having an illness was not associated with increased
suicidal thoughts or behavior. This study suggests that poor insight into having
an illness is not a protective factor, as previously believed, and argues against the
strategy of allowing patients who are unaware of their illness and refuse
treatment simply to fend for themselves.
During my graduate training I was also taught that when grandiose delusions
(e.g., I am married to someone rich and famous) are successfully treated, the risk
of suicide increases. Anna-Lisa’s mother (you may recall I mentioned Anna and
her mother in Chapter 1) had a delusion that the late night talk show host David
Letterman was her husband. When Anna, Lisa’s mother committed suicide, it
was following a prolonged involuntary hospitalization during which time she
was medicated and her symptoms improved somewhat. Her mother’s close
friends believed that she had committed suicide because the medication had
caused her to lose the fantasy world created by her delusions. In other words,
when confronted with the reality that she was not the person her illness led her to
believe she was, she couldn’t bear it. This is a terrible and all too common myth.
In reality, it wasn’t insight or the loss of her delusions that led Anna, Lisa’s
mother to suicide; it was the fact that she did not receive adequate follow-up
treatment. She was not working closely with a doctor or therapist she trusted.
Had there been someone to help guide her through her new-found grasp on
reality, it is unlikely that she would have lost hope and taken her own life. The
need for proper follow-up with a trusted mental health professional can’t be
over-emphasized.

In Summary
The relevant facts revealed by the research are that higher levels of insight
into illness predict:
reliable and consistent adherence to medication
fewer hospitalizations
shorter hospital stays
fewer commitments to the hospital
active involvement in all aspects of treatment

The research also demonstrates the value of examining the various aspects of
insight independently. Having done this, we now know that insight into having
an illness generally is far less important than insight into certain early warning
signs of the illness and the beneficial effects of treatment. These are the two
aspects of insight that the research and my own clinical experience suggest are
key to increasing adherence to treatment.
In order to help your loved one increase his awareness of certain symptoms
and the positive effects of treatment, you will first need to understand the root of
the problem. As you will learn in the next chapter, the research suggests that
poor insight in people with serious mental illness usually has little if anything to
do with being defensive, stubborn, uneducated, uncooperative or simply
difficult.
 3
The Root of the Problem:
New Research on Anosognosia
(Ã-nõ’sog-nõ’sê-ã)
“This is not surprising, since the brain, the same organ we use to think about
ourselves and assess our needs, is the same organ that is affected in
schizophrenia and bipolar disorder.”
E. Fuller Torrey, commenting on the high prevalence of poor insight in
persons with serious mental illness.
(Schizophrenia and Manic Depressive Disorder, 1996, page 27)

Sitting around the table with me were two nurses, a therapy aid, a social worker,
and a psychiatrist. We were in the middle of our weekly clinical team meeting,
discussing whether or not we thought Matt was well enough to be discharged
from the hospital.
“His symptoms have vastly improved,” began Maria, his primary nurse.
“The hallucinations have responded to the medication; he’s calmer and no longer
paranoid.”
“Both his mother and father are ready to have him come home again,” added
Cynthia, Matt’s social worker, “and Dr. Remmers has agreed to see him as an
outpatient.”
“Sounds like we’ve got all our ducks lined up in a row,” the team leader, Dr.
Preston, said, capping the discussion and scribbling a note in Matt’s medical
chart.
“Only one thing troubles me,” Cynthia interjected hesitantly. “I don’t think
he’s going to follow through with the treatment plan. He still doesn’t think
there’s anything wrong with him.”
“He’s taking his medication,” I observed.
“For now. But he’s really stubborn and so defensive. I don’t think that will
last more than a week or two after he hits the sidewalk.” I had to agree with
Cynthia’s prediction, but I didn’t share her view as to why he wouldn’t take his
medication on the outside.
“What makes you say he’s defensive?” I couldn’t help asking.
Nearly everyone around the table burst out laughing, thinking I was being
facetious.
“No, really. I’m serious.”
The resident assigned to the case, Dr. Brian Greene, jumped into the
discussion. “Well, he doesn’t think there’s anything wrong with him. As far as
Matt’s concerned the only reason he’s here is because his mother forced him into
it. The man is full of pride and just plain stubborn. Don’t get me wrong, I like
him, but I don’t think there’s anything else we can do for him as long as he’s in
denial. No one’s going to convince him that he’s sick. He’s just going to have to
learn the lesson the hard way. He’ll be back before he knows what hit him.”
Dr. Preston, recognizing that Matt’s discharge was a forgone conclusion,
ended the discussion saying, “You’re probably right about that and about the fact
that there’s nothing more we can offer him here. When he’s ready to stop
denying his problems, we can help. Until then, our hands are tied. Brian, you’re
meeting with Matt and his parents at three o’clock to go over the plan. Any
questions?” After a moment’s silence Matt’s medical chart was passed around
the table for each of us to sign off on the discharge plan.

“All I need to do is get a job; there’s nothing wrong

with me.”
During the first few years of my brother’s illness, before I went to graduate
school to become a clinical psychologist, I often thought he was being immature
and stubborn. Asked about what his plans were after being discharged from yet
another hospitalization, he ritually answered, “All I need to do is get a job;
there’s nothing wrong with me.” His other stock answer was, “I am going to get
married.” Both desires were natural and understandable, but unrealistic given his
recent history, the severity of the illness, and his refusal to accept treatment.
Someday perhaps he would realize his desires, but it was very unlikely unless he
was actively involved in the treatment recommended by his doctors.
It was exasperating talking to him about why he wasn’t taking his
medication. Having limited experience with the illness, the only reason for his
adamant refusal that I could think of was that he was being stubborn, defensive,
and, to be frank, a pain in the rear. I was lucky that I thought of my brother only
as being stubborn. Because, like many children of people with serious mental
illness, Anna-Lisa often wondered if her mother didn’t love her enough to want
to get better. It took her mother’s suicide to educate Anna-Lisa about what was
really happening. And, for myself, it was only after I started working in the field
and had met many more people with serious mental illness that I stopped giving
such theories much credence. It just never made sense to me that the pervasive
unawareness and odd explanations given by people like Matt and my brother
could be explained simply as having an immature personality or a lack of love.
But you don’t have to take my word for it. Let’s look at the research for a more
objective answer to the question of what causes poor insight and refusal to
accept treatment.

Research on the Causes of Poor Insight

I have considered three different causes of poor insight in the seriously
mentally ill. It could stem from defensiveness. After all, it makes sense that
someone who is seriously ill would be in denial about all the potential and
promise for the future that had been taken by the disease. On the other hand,
perhaps it’s simply the result of cultural or educational differences between the
mentally ill person and the people who are trying to help him. Often, differences
in subculture and values are blamed. For example, Anna-Lisa always believed
that her mother’s poor insight wasn’t denial so much as a preference for the
interesting and fantastic world her illness provided her. When she was
symptomatic, the world was a magical place filled with adventures to be had and
mysteries to explore. Anna-Lisa never wanted to question her mother’s delusions
because she feared that by talking about them, she might take them away and
somehow cause her mother even more pain. And finally, the third cause I have
considered is that poor insight into illness stems from the same brain dysfunction
that is responsible for other symptoms of the disorder.
Historically, psychoanalytic theories predominated to explain poor insight in
schizophrenia. Although the literature is rich with numerous case studies
suggesting that poor insight stems from defensive denial, the question had never
been tested in controlled studies until recently.

Everyday defensiveness is not responsible for the gross

deficits in insight that are so common in these patients.
Two of my doctoral students, Chrysoula Kasapis and Elizabeth Nelson, took
different approaches to this question in their thesis research. Dr. Kasapis
examined the overall level of defensiveness in the patients she studied while Dr.
Nelson looked at the issue of stigma. Neither approach to the question found
anything of significance. Highly defensive patients were generally no more
likely to have poor insight than those with little or no defensiveness. Similarly,
how stigmatizing patients perceived their symptoms to be had little effect on
how much insight they had into their illness. Everyone gets defensive from time
to time and some are more prone to denial than others. The same holds true for
people with serious mental illness. However, everyday defensiveness is not
responsible for the gross deficits in insight that are so common in these patients.
Cultural differences between the examiner and patient may also play a role at
times in mislabeling someone as having poor insight. In other words, the patient
may be well ware of most if not all aspects of his mental illness, but his
subculture might label it something else. Consequently, he would not use the
label “mental illness” to describe himself. Instead he might say, “I have a
nervous problem,” or, in the case of religious beliefs such as those common to
some Caribbean countries, “I am possessed by evil spirits.” The subculture of the
afflicted person needs to be addressed in any study of insight.

It’s ironic, but many patients with poor insight into

their own illness are excellent at diagnosing the same
illness in others!
Related to the issue of cultural influences is the question of patient
education. Has the patient ever been told that he or she has an illness? If so, has
he or she been taught how to identify and label symptoms of the disorder? In my
experience, most patients with poor insight have been told about the illness they
have, yet either claim they haven’t been told or, if they recall being told,
adamantly disagree, claiming that their knowledge is superior to that of the
doctors making the diagnosis. It’s ironic, but many patients with poor insight
into their own illness are excellent at diagnosing the same illness in others!
The answer to the question of whether half of all people with serious mental
illness don’t know they are ill because they have no information about the illness
is actually obvious when you step back for a moment. If you had heartburn that
was bad enough for a friend or relative to convince you to see your family
doctor, who then diagnosed the problem as heart disease and explained that the
pain was angina, you would stop referring to the pain as heartburn and start
calling it angina. You would then make an appointment with a cardiologist and
cancel your next appointment with the gastroenterologist. Why, then, do so many
people with schizophrenia and bipolar disorder fail to do this? Why do they
persist in calling their pain “heartburn” despite all evidence to the contrary?

A Concept of Self that is Stranded in Time

In our paper published in 1991, my colleagues and I proposed that poor
insight in people with serious mental disorders is a consequence of, to coin a
phrase, a broken brain. We came to believe that pervasive lack insight and the
accompanying illogical ideas offered to explain being hospitalized stemmed
from neurological deficits. At that time we hadn’t yet considered a neurological
hypothesis to explain poor insight in bipolar disorder, but we felt there was good
reason to believe that what we were seeing in patients with schizophrenia was
indeed a consequence of brain dysfunction rather than stubbornness,
defensiveness, or ignorance about mental illness in general. The fact is that the
brain circuitry responsible for recording and updating self-concept is not
working properly in such patients.
My self-concept includes, among other things, the following beliefs about
my abilities: I can hold down a job; if I went back to school, I believe I would be
a competent student; I believe I have the education and experience to be a
therapist, and I am generally socially appropriate when I interact with others.
What are some of the beliefs you hold about yourself and your abilities? Do you
believe that you can hold down a job? What if I told you that you were wrong,
that you were incapable of working and might never find employment unless
you swallowed some pills I had for you.
And, by the way, you would have to take those pills for a very long time,
possibly for the rest of your life. What would you say to that? Probably the same
thing my brother once said to me when I told him he would never hold down a
job again unless he took his medication faithfully: “You’re out of your mind!” If
I said that to you, you would likely think I was joking, and after I convinced you
that I was dead serious, you’d come to believe I was crazy. After all, you know
you can work; it’s an obvious fact to you. If I involved other people, including
relatives and doctors, you might start to feel persecuted and frightened. That is
exactly the experience of many people with serious mental illness whom I have
interviewed. Their neuropsychological deficits have left their concept of self,
their beliefs about what they can and cannot do, literally stranded in time. They
believe they have all the same abilities and the same prospects they enjoyed
prior to the onset of the illness. That’s why we hear such unrealistic plans for the
future from our loved ones.

If a Man Can Mistake his Wife for a Hat…

If you have never talked to someone who has suffered a stroke, brain tumor,
or head injury, what I have just said might seem difficult to believe. If so, I
recommend that you read The Man who Mistook his Wife for a Hat, by the
neurologist Oliver Sacks, who is also the author of the book upon which the
movie, “Awakenings” Was based. Dr. Sacks has the gift of being able to describe
in vivid detail the inner life of people who have suffered brain damage.
Writing about one case, which became the title of his book, Dr. Sacks
describes a man who had cancer in the visual parts of his brain and notes that
when he first met Dr. P., a music professor, he couldn’t think why he’d been
referred to the clinic for an evaluation. He appeared normal. There was nothing
unusual about his speech and he displayed a high level of intelligence. However,
as the neurological evaluation proceeded, bizarre perceptions emerged. When
asked to put his shoes back on, he delayed, gazing at his foot with intense but
misplaced concentration. When Dr. Sacks asked if he could help, Dr. P. declined
the offer and continued looking around until he finally grabbed his foot and
asked, “This is my shoe, no?” When shown where his shoe actually was, he
replied, “I thought that was my foot.”
There was nothing wrong with Dr. P.’s vision; it was the way his brain was
constructing and categorizing his perceptions that was disturbed. Later, when he
was sitting with his wife in Dr. Sacks’s office, he thought it was time to leave
and reached for his hat. But instead of his hat, he grabbed his wife’s head and
tried to lift it off, to put it on. He had apparently mistaken his wife’s head for a
hat! When giving talks about poor insight in serious mental disorders I often like
to say: If brain damage can cause a man to mistake his wife for a hat, it is easy to
imagine how it can cause someone to mistake his past self for his current self.
In the late 1980s I worked extensively with neurological patients,
administering psychological tests designed to uncover the deficits caused by
their brain damage. I couldn’t help noticing the similarities between the
neurological syndrome called anosognosia (i.e., unawareness of deficits,
symptoms, or signs of illness) and poor insight in persons with serious mental
illness. Anosognosia bears a striking resemblance to the type of poor insight we
have been discussing. This resemblance includes both symptomatic and
neurological similarities. For example, patients with anosognosia will frequently
give strange explanations, or what neurologists call confabulations, to explain
any observations that contradict their belief that they are not ill.
One forty-two-year-old man I evaluated had been in a car accident and
suffered a serious head injury that damaged tissue in the right frontal, parietal,
and temporal lobes of his brain, leaving him paralyzed on the left side of his
body. When I met with him about a week after the accident I asked if he could
raise his left arm for me, and he answered “yes.” When I asked him to do it, he
lay there expressionless, unable to move his paralyzed arm. I pointed out that he
had not moved his arm. He disagreed. So I asked him to do it again while
looking at his arm. When he saw that he could not move his arm he became
flustered. I asked him why he did not move it, and he refused to answer at first.
When I pressed him, he said, “I know this is going to sound crazy, but you must
have tied it down or something.”
Anosognosia has been with us for as long our species has enjoyed the
benefits of consciousness. More than 2,000 years ago L.A. Seneca, writing on
the moral implications of self-beliefs, described what appears to be a case of
anosognosia following hemianopia (blindness caused by brain damage):
“Incredible as it might appear…She does not know that she is blind. Therefore,
again and again she asks her guardian to take her elsewhere. She claims that my
home is dark.” How could someone not realize she was blind? And why, when
faced with the evidence, would she seek to explain away the blindness?

When one’s conception of who one is gets stranded in

time, one can’t help ignoring or explaining away any
evidence that contradicts one’s self-concept.
The man who had been paralyzed in the car accident could not understand
that he could no longer move the left side of his body. It didn’t fit with what he
believed about himself (that his arm and leg worked fine), so he couldn’t help
trying to explain away any evidence to the contrary. He was just like the blind
woman who did not understand that she was blind, and more easily believed an
alternative explanation (the house was dark) than the truth. Every day someone
with a serious mental illness utters similar explanations to buttress his belief that
there is nothing wrong with him. When one’s conception of who one is gets
stranded in time, cut off from important new information, one can’t help
ignoring or explaining away any evidence that contradicts one’s self-concept.
And so, many chronically mentally ill persons attribute their hospitalizations to
fights with parents, misunderstandings, etc. Like neurological patients with
anosognosia, they appear rigid in their unawareness, unable to integrate new
information that is contrary to their erroneous beliefs.
One final similarity between neurological patients with anosognosia and the
seriously mentally ill involves the patch-like pattern of poor insight. Pockets of
unawareness and awareness often coexist side by side. For example, the
anosognosia patient may be aware of a memory deficit but unaware of paralysis.
Similarly, we have seen many patients with schizophrenia who are aware of
particular symptoms while remaining completely unaware of others.
Damage to particular brain areas can result in anosognosia. Studies of
anosognosia, therefore, provide a practical starting point for hypothesizing about
the brain structures responsible for insight in persons with serious mental
disorders. Neurological patients with anosognosia are frequently found to have
lesions (i.e. damage of one kind or another) to the frontal lobes of their brain.
Interestingly, research has shown that these same areas of the brain are often
dysfunctional in people with serious mental illness.
In one study of neurological patients at Hillside Hospital in Queens, New
York, conducted in collaboration with Dr. William Barr and Dr. Alexandra
Economou, I compared patterns of unawareness in three groups of patients
suffering damage to three different regions of the brain. This study was funded
by the Stanley Foundation and had as one of its goals identifying the brain
dysfunction most likely to produce awareness deficits. As expected, patients
with frontal lesions were more likely to show problems with insight into their
illness than patients with left posterior damage. Let’s look at an example.
George, a seventy-one-year-old man who had suffered a stroke, was asked to
draw the clock on the left side of the figure that appears below. Before drawing
the clock, he was asked, “Do you think you will have any difficulty copying of
this picture?”
George was instructed to use the following 4 point scale to answer the
question: 0 = no difficulty, 1 = some difficulty, 2 = much difficulty, and 3 =
cannot do. He answered “0” and said he would have no difficulty. The right side
of the figure shows the drawing he made after exerting great effort.
 More striking even than his inability to recognize that the stroke had left him
unable to perform such a simple task is was happened next. When asked if he’d
had any difficulty drawing the clock, he answered, “No, not at all.” Further
questioning revealed that he could not see or comprehend the differences
between his clock and ours. When it was pointed out to him that his numbers
drifted past the circle, he became flustered and said, “Wait, that can’t be my
drawing. What happened to the one I drew? You switched it on me!” This is an
example of a confabulation. Confabulations are the product of a brain “reflex”
that fills in gaps in our understanding and memory of the world around us.
Almost everyone confabulates a little. For example, have you ever heard
someone stop in the middle of recounting a something that happened to them
and say something like “Wait, I was lying. I don’t know why I said that? It didn’t
happen that way!” This is an example of an instance when someone realizes he
has confabulated and corrects himself. Confabulations are constructed memories
and/or experiences that are especially common in people with brain dysfunction.
However, in such individuals, you don’t usually get the self-correction because
they don’t understand what has just happened. George wasn’t lying when he said
I had switched the drawing on him. It was the only thing that made any sense to
him and so, for a moment, he believed that was what happened.

He was operating under beliefs that were linked to his

past self rather than his current self.
In his book The Principles of Psychology, William James wrote: “Whilst part
of what we perceive comes through our senses from the object before us, another
part (and it may be the larger part) always comes from our own mind.”
There are few better examples of James’s insight than the one I have just
given you. George “saw” his drawing using his sense of vision. But his
perception of the clock, the image of the drawing that was processed in his brain,
was something altogether different from what his eyes saw. George had a
concept of himself, a self-schema, that included the belief that he could easily
copy a simple drawing of a clock. You have the same belief as part of your self-
schema. You might not consider yourself artistically endowed, but you believe
that you could produce a reasonable facsimile of the drawing if asked to. In a
sense, this belief was stranded in George’s brain, disconnected from his visual
senses and left unmodified by the stroke he had suffered. He was operating
under beliefs that were linked to his past self rather than his current self. He saw
the numbers drifting outside his lopsided circle, but he perceived the numbers to
be in their proper place inside a symmetrical circle. Our brains are built to order,
and even help construct, our perceptions.
Here is a simple example of what I am talking about. Answer this question:
What letter appears in the box you see below?

If you answered “E” you saw what the majority of people who are given this
task see. But in reality, you did not see the letter E. What you saw is a line with
two right angles (a box-like version of the letter “C”) and a short line that is
unconnected to the longer one. Yet, you probably answered E because you
perceived the letter E. The visual processing and memory circuits of your brain
closed the gap between the lines so you could answer the question.
To prove that poor insight in serious mental disorders is neurologically
based, however, my colleagues and I needed more than observed similarities
with neurological patients. We need testable hypotheses and data that are
confirmatory. Knowing that patients with schizophrenia frequently show poor
performance on neuropsychological tests of frontal lobe function, we
hypothesized that there should be a strong correlation between various aspects of
unawareness of illness and performance on these tests of frontal lobe function.
Dr. Donald Young and his colleagues in Toronto, Canada, quickly tested and
confirmed our hypothesis. They studied patients with schizophrenia to examine
whether performance on neuropsychological tests of frontal lobe function
predicted the level of insight into illness, and the result showed a strong
association between the two. Of particular note is the fact that this correlation
was independent of other cognitive functions they tested, including overall IQ.
In other words, poor insight was related to dysfunction of the frontal lobes of the
brain rather than to a more generalized problem with intellectual functioning.
Taken together, these results strongly support the idea that poor insight into
illness and resulting treatment refusal stem from a mental defect rather than
informed choice.
But just as one swallow does not make a summer, one research finding does
not make an indisputable fact. The next step in determining more definitively
whether poor insight into illness is a consequence of frontal lobe dysfunction is
to replicate the findings of Young and his colleagues in a new group of patients.
As it turns out, the finding that poorer insight is highly correlated with frontal
lobe dysfunction has been replicated many times by various research groups (see
table below). The list of replications I give here will undoubtedly be added to by
the time you read these words, as I am aware of yet unpublished results that also
confirm the hypothesis. Repeated replications by independent researchers are
infrequent in psychiatric research. The fact that various researchers have found
essentially the same thing as Young and his colleagues speaks to the strength of
the relationship between insight and the frontal lobes of the brain. A few studies
have not found this relationship, but in those cases methodological flaws in the
design of the research are likely the reason.

Executive (frontal) dysfunction and poor insight

Young et al. Schizophrenia Research, 1993
Lysaker et al. Psychiatry, 1994
Kasapis et al. Schizophrenia Research, 1996
McEvoy et al. Schizophrenia Bulletin, 1996
Voruganti et al. Canadian Journal of Psychiatry, 1997
Lysaker et al. Acta Psychiatr Scand, 1998
Young et al. Journal of Nervous and Mental Disease, 1998
Bell et al. Chapter in: Insight & Psychosis, Amador & David, Eds. 1998
Morgan et al. Schizophrenia Research, 1999a & 1999b
Smith et al. Journal of Nervous and Mental Disease, 1999
Smith et al. Schizophrenia Bulletin, 2000
Laroi et al. Psychiatry Research, 2000
Bucklet et al. Comprehensive Psychiatry, 2001
 Lysaker et al. Schizophrenia Research, 2003
Drake et al. Schizophrenia Research, 2003
Morgan and David (review) in Insight and Psychosis, 2nd Edition (Oxford
University Press, 2004)

There is also an emerging body of literature linking poor insight in

schizophrenia and other psychotic illnesses to functional and structural
abnormalities in the brain, usually involving the frontal lobes. A review of these
brain-imaging studies (e.g., using MRI, CT and PET scans) can be found in
Insight and Psychosis, Amador XF and David AS (Editors), Oxford University
Press, 2005.
The research discussed above, and other newer studies that link poor insight
to structural brain abnormalities, lead us to only one conclusion. In most patients
with schizophrenia and related psychotic disorders, deficits in insight and
resulting non-adherence to treatment, stem from a broken brain rather than
stubbornness or denial.
If you are dealing with a mental health professional who is holding on to the
outdated idea that severe and persistent problems with insight are a consequence
of “denial” (i.e., a coping mechanism), ask him or her to look at the
“Schizophrenia and Related Disorders” section of their DSM-IV-TR, page 304:

Associated Features and Disorders

“A majority of individuals with Schizophrenia have poor insight regarding

the fact that they have a psychotic illness. Evidence suggests that poor
insight is a manifestation of the illness itself rather than a coping strategy…
comparable to the lack of awareness of neurological deficits seen in stroke,
termed anosognosia.”

Now, if the person you are trying to educate is extremely resistant and also a
careful reader, he or she may say something like, “Yes, but I also see that Dr.
Amador was the co-chair of this section of the DSM, so he just wrote what he
already believes. It doesn’t prove anything!” If that happens, have the person
read the introduction to the last revision and he will learn that every sentence in
this version of the DSM had to be peer reviewed before it was added. Peer
review in this context involved other experts in the field receiving the proposed
text along with all the research articles that supported the changes my co-chair
and I wanted to make. All changes had to be supported by reliable and valid
research findings. So, although the field has been slow to give up outdated
theories about poor insight in these disorders (thinking it’s denial rather than
anosognosia), we are making progress.

New Research on Anosognosia

I have been invited to guest edit a special edition of the National Institute of
Mental Health’s journal Schizophrenia Bulletin focused on Poor Insight in
Schizophrenia. This special issue is slated to appear in late 2010. I thought it
would be helpful to readers of this book to provide a brief summary of some of
the most recent research implicating brain dysfunction as the root cause of
unawareness of illness that will be presented in that publication. Below is a brief
listing of some of the studies that will be reviewed By Dr. Celine Paillot in that
edition of the Bulletin.
Young et al, The journal of nervous and mental disease, 186(1), 44-50, published
1998.
Lack of illness awareness is related to defective frontal lobe functioning as
indexed by neuropsychological measures.
Laroi et al., Psychiatry research, published 2000.
Keshavan et al., Schizophrenia research, 70, 187-194, published 2004.
Deficits in insight may be related to a generalized dysfunction of neural
networks involved in memory, learning, and executive functions.
Aleman et al., British Journal of Psychiatry, 189, 204-212, published 2006.
Neuropsychological dysfunction, specifically impairment of set shifting and
error monitoring, contributes to poor insight in psychosis
Pia & Tamietto, European Archives of psychiatry and clinical neuroscience,
60(5), 31-37, published 2006.
Lack of insight in schizophrenia may occur as a neurological disease per se
following brain damage that seems related to frontal lobe areas
Shad et al., Schizophrenia Research, 86, 54-70, published 2006.
Lack of insight is correlated to lower scores on neuropsychological measures
that assess executive functions such as The Wisconsin Card Sorting Test
(WCST).
Sartory et al., Schizophrenia Bulletin, 35 suppl.1, 286, published 2009.
Lack of insight correlated with verbal recognition performance
Lack of awareness is best accounted for by poor verbal recognition performance.
 Anosognosia versus Denial
Often I am asked the question: “How can I know whether I am dealing with
Anosognosia versus Denial?” There are three main things you should look for:

1. The lack of insight is severe and persistent (it lasts for months or years).
2. The beliefs (“I am not sick.” “I don’t have any symptoms.” etc.) are fixed
and do not change even after the person is confronted with overwhelming
evidence that they are wrong.
3. Illogical explanations, or confabulations, that attempt to explain away the
evidence of illness are common.

Ideally, you would also want to know if neuropsychological testing revealed

executive dysfunction. But regardless of whether the problem is neurologically
based, or stemming from defensiveness, or both, the most important question is:
How can you help this person to accept treatment? That is the focus of the rest of
this book and the cause of the severe and persistent “denial” may be less
important than how you choose to deal with it.
But before we move on to that topic, one last comment about anosognosia
will be helpful because many people despair that they will never be able to help
their loved one if the denial is in fact a symptom of the illness.

A Broken Brain Is Easier to “Fix”

The bottom line to all of this research is that more likely than not, a broken
brain is creating barriers to insight and acceptance of treatment in the mentally
ill person you’re trying to help. But that is no reason to despair. There are two
immediate ways in which you can use this knowledge to benefit your loved one
and yourself. First, when faced with the frustration of trying to convince him or
her to get help, remember the enemy is brain dysfunction, not the person. This
shift in your thinking can go a long way toward lowering your level of
frustration, increasing your effectiveness, and building a collaborative
relationship with the person you are trying to help. Secondly, this knowledge can
be used to rekindle hope that you will be able to help your loved one accept the
help that’s being offered. Hope? If you’re like most people, the research I
reviewed above may have left you feeling more pessimistic or confused than
optimistic! After all, brain damage is irreparable, isn’t it? If poor insight is
another symptom of brain dysfunction, then what is there to hope for?
 A common myth is that personality traits like stubbornness or defensiveness
are far easier to fix than deficits caused by brain damage. In fact, however, it is
far more difficult to change a person’s personality than to teach him how to
compensate for some forms of brain dysfunction. So, although the notion that
brain dysfunction can cause poor insight may at first lead you to feel powerless,
it is actually grounds for renewed hope.
Rehabilitation is possible following many types of brain damage, both
because some brain cells can be repaired and more often, because functions can
be re-routed to other, undamaged parts of the brain. In such cases doctors
carefully assess the deficits caused by the lesions and create a plan to
compensate for the loss of ability. This is the usual practice following strokes,
brain tumors, head injuries, and other causes of central nervous system damage.
In fact, rehabilitation specialists are trained specifically for this task, which is
frequently referred to as cognitive remediation.
This approach is highly relevant to the task of helping the seriously mentally
ill develop awareness of his or her illness and the new skills needed to become
willing and active participants in treatment. In the chapters that follow, you will
learn how to evaluate the nature and severity of the awareness deficits your
loved one has, and to devise a plan for helping him to compensate for these
deficits. With this method, you can help him develop the kind of insight he needs
(not that he has an illness but instead how certain behaviors lead to positive
outcomes) to cope effectively with the illness and accept treatment.
Accomplishing this can be much easier than you might think.
 Part II
How to Help Using LEAP
“You can’t always get what you want. But if you try sometime, you just might
find, you get what you need!”
Mick Jagger and Keith Richards The Rolling Stones, Let it Bleed, 1969
 4
The Right and Wrong Approach
“Tell me one last thing,” said Harry. “Is this real?
Or has this been happening in my head?”
Dumbledore beamed at him…” Of course it is happening in your head, Harry,
but why on earth should that mean it is not real?”
J.K. Rowling, Harry Potter and the Deathly Hallows, 2007, page 723

Dr. Karen Holloway sighed and said, “Michael’s back,” as she walked toward
where I was sitting in the nurse’s station. “I need you to go to the E.R. and do his
admission,” she added.
“Michael Kass?” I asked, incredulous.
“Afraid so,” Karen replied, a bit amused by my surprise. “Get used to it,
Xavier. Some patients are stuck in the revolving door, and Michael’s one of
them.”
This was 1988 and Karen was the Chief Resident at the hospital in New York
City where I was an intern. To this day she remains one of the more
compassionate, bright, and level-headed clinicians with whom I have ever had
the pleasure of working. The diagnosis of “Revolving Door Patient” was not one
she made lightly or without compassion. Michael Kass had been discharged
from the hospital only six weeks earlier after a one-month hospitalization. When
he left, he was no longer hearing voices. His delusions still lingered, but he felt
little pressure to talk about them, and he was scheduled to receive follow-up
treatment in one of our outpatient clinics. Judging by Karen’s comment, I guess I
didn’t hide my disappointment and surprise that he was back so soon.
I took the stairs two at a time, eight floors down, to the Emergency Room—
no use waiting for the overburdened elevators—and walked to the door labeled
“Psych. E.R.” Behind this door, sequestered from the rest of the E.R. service,
was a suite of five rooms with four patient bays to the left and the nurses’ station
to the right. As I entered I took a quick right and ducked into the nurses’ station.
I didn’t want Michael to know I was there until I’d had a chance to talk to the
triage nurse. The report I got was frustrating to hear.
 After leaving the hospital, Michael went home to live with his parents but
never showed up for his first outpatient appointment. His parents, in their late
sixties, didn’t know that Michael hadn’t gone to see his doctor. They’d asked
about his appointment, but he didn’t want to talk about it. They’d called the
clinic, but no one would speak to them about whether or not their thirty-five-
year-old son had kept his doctor’s appointment. They also didn’t know that after
the one-week supply of medications he’d been given when he left the hospital
ran out, he’d never had the prescription refilled.
I spent about twenty minutes looking at his old chart, which the triage nurse
had ordered up from medical records. Then I stepped out of the nurses’ station
and greeted my new-old patient.
“Hi, Michael, how are you?”
“Dr. Amadorafloor! What are you doing here?” he answered, clanging 6
laughing, and talking a mile a minute. “You’ve got to get me out of here! I was
minding my own business—I wasn’t hurting anyone—the police got it all
wrong. Get me out of here, okay? You’ve got to get me out because…”
“Michael, Michael, hold on, wait up a minute!” I tried to interrupt.
“I’m not supposed to be beer. They’ll find me here if I stay. Gotta go, gotta
get out, okay?”
“Michael, try to slow down and tell me what happened. Okay?”
“I’m telling you what happened. I’m not supposed to be here,” he shot back,
clearly annoyed with me.
It took almost an hour to get through the checklist I was trained to use. I
completed a mental status exam, 7 evaluated his current symptoms, and listened
to his version of what had happened and why he was in the Psych. E.R. Excusing
myself while he was again pleading with me to get him out, I escaped to the
nurses’ station to write down what I had learned.
Michael was once again hearing the voices of government agents who were
commenting on his every move. While we were talking, I asked him what the
voices were saying, and he repeated, “He is sitting on the bed, talking with that
doctor, he can’t escape us now.” Given the voices he was hearing, it isn’t
surprising he’d developed the delusion that some secret federal agency was
monitoring his movements and planning to assassinate him.
I noted in his chart the re-emergence of the hallucinations and exacerbation
of the longstanding delusion about government agents persecuting him. I also
noted that he was not currently suicidal or homicidal, that his “insight into
illness” was poor, and a number of other observations I had made while
interviewing him. My written recommendation was to restart the antipsychotic
medication he’d been on when he was discharged six weeks ago and to admit
him to our inpatient psychiatric unit “for stabilization.” Then I went back to see
Michael, told him my recommendation, and asked him to sign himself into the
hospital for a couple of weeks. He refused.
“The only thing wrong with me is that I’m going to get killed if I stay here
any longer!”
Since he had been found hiding in a subway train tunnel and had struggled
with the police when they extracted him, I thought we had a fairly good case for
an involuntary admission. When he was found, he hadn’t eaten or bathed in
several days and he had made camp dangerously close to an active track,
explaining to police that “they [the federal agents] would never think to look for
me here.” I called Dr. Holloway; she agreed, and the appropriate papers were
signed to admit him against his will for 72 hours. If he didn’t want to stay after
the 72 hours, and if at that time we felt he was still a danger to himself because
of his mental illness, we would take him before a mental health court and try to
get a judge to order thirty days of involuntary treatment.
When I explained the plan to Michael, he understandably went ballistic. He
was terribly frightened and felt certain that he would be killed if he stayed in the
hospital. However, after accepting medication by injection, he calmed down
considerably and was moved upstairs to the psychiatric ward.

Unless something was done to engage Michael in

treatment, this hospitalization would be nothing more
than a band-aid.
Though we had resolved the current crisis, unless something was done to
engage Michael in treatment, this hospitalization would be nothing more than a
band-aid. He would be “stabilized” and discharged with prescriptions he would
never fill and an appointment he would never keep because, as he put it, “I am
not sick! I don’t need medicine—I need protection from the feds!”

The Wrong Approach

I was using the medical model with Michael, which, in most cases, is the
wrong approach to take for dealing with the long-term issue of poor insight and
refusal to take medicine. The medical model is supposed to work, more or less,
in the following way. Once the diagnosis and treatment are decided upon, the
patient is informed of both. If the patient refuses, and if he fits the legal criteria
for an involuntary admission to a hospital, the doctors take charge. In some
cases, medical doctors operating under a benevolent paternal ethic are able to
order treatment against a person’s wishes. Like a parent who knows what’s best
for her child, the physician can take control by admitting the person and treating
him against his will. We abide by similar, although less dramatic laws every day
(e.g., laws that require seatbelts, mandatory rabies inoculation of pets, and
motorcycle helmets; those that prohibit drunk driving, etc.).
My next task under this model was to educate Michael about his illness and
the need for treatment. If you are reading this book, you know that when it
comes to individuals like Michael, education about their illness does not
translate into their gaining insight. And, indeed, that is what happened over the
two-week period Michael was in the hospital.
I told him all about delusions and hallucinations and confronted him about
his “denial” of the illness. I explained to him the nature of the problems he had
and why he should accept the treatment being offered. As he had during his
previous hospitalization, once he became more stable, he readily agreed that he
would take the medication when he left the hospital. When I confronted him and
said, “I think you’re just saying that so you can get out of here,” he sometimes
sheepishly admitted to the lie and told me there was nothing wrong with him
except the fact that people wouldn’t leave him alone. But most often he would
stick to the party line and say, “I know the medication helps me and that I need
to take it.” Ironically, as some of his symptoms responded to the medication, he
got better at consistently feigning allegiance to the doctor’s orders.
For people with serious mental illness who are unaware of the illness, this
traditional approach rarely works. It rests on the mistaken assumption that the
patient has come to see the doctor because he feels he has a problem and wants
help. It assumes a collaborative approach from the start: The doctor as an ally,
not an adversary.
Although the details might differ, Michael’s story of hospitalization followed
by outpatient noncompliance, worsening illness, and readmission to the hospital,
is all too typical. So was my inadequate response to the bigger problem of what
would happen to him when we were done with him (again). I was operating
under a medical model that focused on the tasks of diagnosis and treatment. This
is the wrong approach when dealing with someone who has, for many years,
consistently argued that there is nothing wrong with him and doesn’t need help.
It’s not a bad approach for the short term, but it’s mostly worthless over the long
term because the “patient” doesn’t see himself as a patient.
 If you can imagine something like this happening to
you, then you have some idea of what it is like for
someone with a mental illness to have a delusion and
anosognosia.
An analogy might be useful to help you understand why this is so. Imagine I
told you that that you did not live where you live. You might laugh and tell me to
stop joking around. But what if I produced a restraining order from a court that
ordered you to stay away from what you told me was your home address. Now
let’s say you live with other people, perhaps members of your family, and you
saw that they had signed off on this court order. What would you think? And
imagine that you then called them to ask why they’d signed off and they said
something like, “You seem like a nice person, but if you keep coming around
here we are going to call the police. You don’t live here, and we don’t want to
press charges, but we will if you put us in that position. Please stop calling us;
you need help!” If you can imagine something like this happening to you, then
you have some idea of what it is like for someone with a mental illness to have a
delusion and anosognosia.
Stay with the analogy and imagine you went home only to be arrested by the
police. The nice people at your address did not want to press charges, so the
police took you to the E.R.. Would you be receptive to my advice that you
should take psychiatric drugs for your “delusion” that you live where you know
you live? I doubt it. I have done this role play countless times and the answer is
always “No!” When I ask why, my role play partner usually laughs and says,
“Because it’s the truth. I know who I am and where I live!” Well, that’s what its
like for a person with a serious mental illness to have a delusion and
anosognosia. The medical model is not going to win this person’s trust and
cooperation over the long haul. Like you or me, if we were in this situation, once
the person is out of the hospital and on his own he will not take medicine. If you
can see the situation from that person’s perspective, its common sense really.

The Right Approach

In my experience, it is often easy to change such an adversarial relationship
into an alliance and long term engagement in treatment. It takes some focused
effort, but it’s not hard to do once you learn the main lessons. The hardest part is
putting aside your preconceptions and remembering that no amount of arguing
has previously changed your loved one’s opinion about being mentally ill. My
best advice to you is to stop trying to convince him he is ill. When you accept
your powerlessness to convince him you know the answer to the penultimate
question (Is he, or is he not, mentally ill?) you will begin to open doors you
didn’t even know existed. Remember, if you had truly succeeded in convincing
your loved one he has a mental illness you would not be reading this book. The
first step, therefore, is to stop arguing and start listening to your loved one in a
way that leaves him feeling that his point of view—including his delusional
ideas and the belief that he is not sick—is being respected.

The first step, therefore, is to stop arguing and start

listening to your loved one in a way that leaves him
feeling that his point of view—including his delusional
ideas and the belief that he is not sick—is being
respected.
Professor Dumbledore’s answer to Harry Potter’s question quoted at the start
of this chapter is exactly right. For all intents and purposes your loved one’s
experience is very real indeed. He truly is not sick. If you can relate to your
loved one in this way, you will be much closer to becoming allies and working
together to find the reasons he may have to accept treatment—even though he is
not sick. You don’t have to agree with his reality—the realness of his experience
—but you do need to listen to it and genuinely respect it.
My colleagues and I have helped many patients accept treatment for a wide
range of problems that they feel have nothing to do with mental illness: e.g., to
relieve the stress caused by the conspiracy against them; to help them sleep; to
get their families “off their back”; to lower the volume on the voices being
transmitted by the CIA, etc..
I don’t expect you to immediately embrace this idea. Most people find it
counter-intuitive and even a little scary. Others like the concept of stepping back
from the debate about whether or not the person is ill but are not sure about how
it is going to help. Let me start addressing these concerns by describing my
approach and the science behind it.

Motivational Enhancement Therapy and LEAP

 Anyone who has dealt with severe denial in a loved one knows that it can’t
be fixed simply by educating the person about the problem he doesn’t believe he
has. Such attempts are futile because the “patient” doesn’t see himself as a
patient. And, research shows that confrontation and group “interventions” also
rarely work. In fact, contrary to what most people believe, “interventions” often
do more harm than good! So what does work?
Motivational Enhancement Therapy (MET) is a science-proved method that
helps people in denial accept treatment. It was first developed more than twenty
years ago for professionals like me who were working with substance-and
alcohol-abusing patients. Unfortunately, despite its proven effectiveness for
engaging people with substance abuse problems in treatment, few therapists are
trained to use it with patients who have a serious mental illness. This needs to
change because there is plenty of research to support using MET with such
individuals.
In 2002, the American Journal of Psychiatry published a review by Dr.
Annette Zygmunt and her colleagues of studies published over a 20-year period
that were aimed at improving medication adherence in schizophrenia. The
researchers found that “…although interventions and family therapy programs
relying on psychoeducation were common in clinical practice, they were
typically ineffective [with respect to improving adherence to treatment]…
Motivational techniques, [on the other hand] were common features of
successful programs.” By “motivational techniques” the authors meant the main
elements of MET.

I realized almost immediately that the specific

communication skills and strategies we were teaching
therapists could be learned by anyone.
Relying on the same evidence base reviewed by Dr. Zygmunt and her
colleagues, Dr. Aaron T. Beck (considered by many to be the father of cognitive
psychology) and I developed a form of MET we called Medication and Insight
Therapy (MAIT) for an inpatient research study to be used with people who
have serious mental illness. At the time (mid-1990s), we taught this method only
to therapists. But I realized almost immediately that anyone could learn the
specific communication skills and strategies we were teaching. I felt it was more
a communication style than a complicated therapeutic intervention. I came to
believe that you don’t need an M.D., M.S.W., or Ph.D. to use the main elements
of this therapy effectively. Consequently, I developed a lay-friendly version that
can be taught to lay persons and mental health professionals alike.

Listen-Empathize-Agree-Partner (LEAP) method

The result was the Listen-Empathize-Agree-Partner (LEAP) method. Over
the past six years, since the publication of the first edition of this book, I have
taught LEAP to thousands of people across the country and overseas. Although
the focus of my LEAP workshops was to show family members and health
providers how to convince someone with serious mental illness to accept
treatment, people at every seminar have commented on the usefulness of this
method across a range of problems. That has been my experience as well. So
whether or not you believe your loved one has anosognosia for mental illness, or
simple denial of illness, LEAP can help.
 5
Learning to LEAP
When I was five years old I wanted to be Batman. It’s true that Superman,
Spiderman, and the Hulk were also appealing, but for me they were all a distant
second to Batman. It wasn’t his mask and ears—which I remember thinking
looked goofy—it was that amazing “Bat Utility Belt.” I had to have a Batman
costume for Halloween—nothing else would do. I still remember how I felt
when I strapped on that belt for the first time. I could conquer all evil, set things
right and live to tell the tale. I had power to do good.
The best thing about Batman was that he was a regular person. He did not
have super powers.It was his tool belt—and that’s really all it was—that set him
apart from mere mortals. There were many high tech tools in that belt, but my
favorite was the grappling hook attached to a dental-floss-thin rope that he used
to walk up the sides of buildings. With those tools, there was no wall he could
not climb, no obstacle he could not overcome. There was no enemy he could not
beat.
I want you to imagine that you, too, have a tool belt. It can be made of any
material you like, stylish (Dolce and Gabbana) or purely functional looking
(Craftsman). Imagine it is full on the left side with all the tools we use when
relying on the medical and psychoeducational approaches (e.g., Making a
diagnosis, educating the person about his diagnosis, giving him his prognosis
and prescriptions for treatment, reality testing about delusions, etc.). These tools
are highly effective when we are dealing with persons who have insight and
want our help. They are ideal for persons who identify themselves as patients or
consumers.
Now I want you to imagine that your tool belt is empty on the right side.
Loops, hooks, and pockets all lay open and ready to receive the tools you will
need to help someone accept treatment even thought he does not believe he is ill.
I’m going to be providing you with the tools to fill that side of your belt. They
will serve you well, but you’ll have to practice using them.
The first and most important tool you will put in your belt is the focus of
next chapter—the Reflective Listening Tool. But you will also learn how to not
“buy into delusions” while listening without judgment, how to delay giving your
opinion when asked potentially deal-breaker questions like “So do you think I’m
sick and should take this medicine?” (I will also explain all the reasons you
should delay answering such questions and choosing the right time to finally
give your opinion); and a tool for giving your opinion in a manner that allows
your loved one to save face, retain dignity, not feel betrayed and most
importantly, stay in the conversation and not walk away.

To make all this happen you have to put your goal of

convincing your loved one he is sick high up on a shelf, at
least for the time being.
I think you will find that LEAP’s effectiveness for dealing with someone in
denial or with anosognosia is immediately intuitive. Once you learn the basic
principles, it simply makes sense that it will work far better than what you’ve
been doing all along. The core tools are Listening (using “reflective” listening),
Empathizing (strategically—especially about those feelings you’ve ignored
during your previous arguments about your loved one’s being sick and needing
treatment), Agreeing (on those things you can agree on and agreeing to disagree
about the others), and ultimately Partnering (forming a partnership to achieve
the goals you share).
More often than not the first aim of LEAP is to repair the damage done to the
relationship by your (or other’s) previously adhering to the medical model and
taking the “Dr. knows best approach.” The second task is to help your loved one
find his own reasons to accept treatment. To make all this happen you have to
put your goal of convincing your loved one he is sick high up on a shelf, at least
for the time being.

Listen with only one goal: to understand the other

person’s point of view and reflect your understanding
back to him
The cornerstone of LEAP is reflective listening. It is also the one feature of
the method that immediately turns down the volume on everyone’s anger, builds
trust, and mends fences. The reason is that you listen with only one goal: to
understand the other person’s point of view and reflect your understanding back
to him. You don’t comment on what he just said, point out ways in which you
think he’s wrong, judge, or react in any way. Sounds easy until the person starts
talking about the fact that there’s absolutely nothing wrong and he doesn’t need
treatment!

Listen
Reflective listening is a skill that needs to be cultivated. It doesn’t come
naturally to most people. To succeed, you will need to learn to really listen and
not react to what your loved one feels, wants, and believes. Then, after you think
you understand what you were told, you need to reflect back, in your own words,
your understanding of what you just heard. The trick is to do this without
commenting, disagreeing, or arguing. If you succeed, your loved one’s resistance
to talking with you about treatment will lessen and you will begin to gain a clear
idea of his experience of the illness and the treatment he doesn’t want. When you
know how your loved one experiences the idea of having a mental illness and
taking psychiatric drugs, you will have a foothold you can use to start moving
forward. But you will also need to know what his hopes and expectations are for
the future, whether or not you believe they’re realistic. If you can reflect back an
accurate understanding of these experiences, hopes, and expectations, your loved
one is going to be much more open to talking with you. More important, he is
going to be much more open to hearing what you have to say.

Empathize
The second tool for your tool belt involves learning when and how to express
empathy. If there were a moral to each technique, the one for empathizing would
go something like this: If you want someone to seriously consider your point of
view, be certain he feels you have seriously considered his. Quid pro quo. That
means you must empathize with all the reasons he has for not wanting to accept
treatment, even those you think are “crazy.” And you especially want to
empathize with any feelings connected to delusions (such as fear, anger, or even
elation if the delusion is grandiose). But don’t worry; empathizing with how a
particular delusion makes one feel is not the same as agreeing that the belief is
true. This may seem like a minor point, but, as you will learn, the right kind of
empathy will make a tremendous difference in how receptive your loved one is
to your concerns and opinions.
 Agree
Find common ground and stake it out. Knowing that what you want for your
loved one is something he does not want for himself can make it seem as if there
is no common ground. You want him to admit he’s sick and accept treatment. He
doesn’t think he’s sick, so why in the world would he take medicine for an
illness he doesn’t have? To avoid coming to an impasse at this point, you need to
look closer for common ground and for whatever motivation the other person
has to change. Common ground always exists, even between the most extreme
opposing positions.

You will now be able to present the idea that

Medication might help him to achieve his goals.
The emphasis here is on acknowledging that your loved one has personal
choice and responsibility for the decisions he makes about his life. When you
use the agreement tool, you become a neutral observer, pointing out the various
things you do agree upon. If invited, you can also point out the positive and
negative consequences of decisions your loved one has made. That means
refraining from saying things like, “See, if you had taken your medication, you
wouldn’t have ended up in the hospital.” Your focus is on making observations
together--identifying facts upon which you can ultimately agree. Rather than
making an observation or statement about what happened, you ask a lot of
questions, such as, “So what happened after you decided to stop taking your
medication?” “Did the voices quiet down after you stopped?” “After you
stopped taking the medication, how long was it before you went to the hospital?”
If you have been using reflective listening and empathy, your loved one is going
to feel that you are an ally rather than an adversary, and getting answers to such
questions will be a lot easier than it may sound. When you put aside your agenda
for the time being you can find a great deal of common ground. For example, if
the answer to the question about what happened after the medicine was stopped
was “I had more energy but also I couldn’t sleep and got scared.” You can agree
with that observation without linking it to having a mental illness.
At this point in the process you will know the motivations your loved one
has to accept treatment (e.g., “sleep better”, “feel less scared”, “get a job”, “stay
out of the hospital”, “stop people from bothering me about being ill”, etc.) that
may have nothing to do with the belief he or she has a mental illness. You will
know what his short and long term goals are because you will have talked about
them together. And with this knowledge you will now be able to present the idea
that medication might help him to achieve his goals. And again—I can’t
emphasize this enough— your suggestions may have nothing to do with the
notion that your loved one has a mental illness.

Partner
Forming a partnership to achieve shared goals is the last and, in my
experience, the most satisfying tool you will use. Once you know the areas
where you can agree (e.g., staying out of the hospital, getting a job, going back
to school, getting an apartment, etc.) you can now collaborate on accomplishing
those goals. Unlike the previous techniques, this one involves both your and
your loved one’s making an explicit decision to work together and become
teammates striving for the same goal. You may call the prize “recovery from
illness” while your loved one calls it “getting a job,” but the names are irrelevant
to arriving at a shared plan of action that will, more often than not, involve
accepting treatment and services.
 6
Listen
In my LEAP seminars I always ask, “Why would anyone want to listen to you if
he felt you had not first listened to him? Quid pro quo.”This important
psychological principle—which is the cornerstone of my method for breaking an
impasse—is far from new.More than 2,000 years ago the Roman poet Publilius
Syrus said, “We are interested in others when they are interested in us.”
Psychologists who are expert in conflict resolution and marriage and family
therapy have written about this fundamental principle for decades. Dale
Carnegie, author of the 70-year-old best seller How to Win Friends and Influence
People writes, APhilosophers have been speculating on the rules of human
relations for thousands of years, and out of all that speculation, there has evolved
only one important precept. It is not new. It is as old as history. Zoroaster taught
it to his followers in Persia twenty-five hundred years ago. Confucius preached it
in China twenty-four centuries ago. Jesus taught it among the stony hills of
Judea nineteen centuries ago. Jesus summed it up in one thought—probably the
most important rule in the world: “Do unto others as you would have others do
unto you”.
More recently the authors of Getting to Yes, The 7 Habits of Highly Effective
People, Good to Great, How to Argue and Win Every Time and other insightful
observers of human relations have all emphasized this same fundamental
principal of persuasion. But despite the ancient lineage and popular
dissemination of this simple and logical truth, it is too often overlooked when we
are lured into an “I’m right, you’re wrong” situation and end up thrashing around
like a fish caught on the end of a line, certain that if we try just hard enough
(speak more loudly or repeat our position once again) we will win. And
sometimes we do succeed in bending the other person to our will, but not
without doing some damage. Listening with genuine curiosity and respect is the
key to not getting stuck in this trap and opening the other person to caring about
your opinion.
It was 7:30 a.m. and morning rounds had begun on the ward where I worked
as an attending psychologist. The entire day shift was seated in a circle around
the room. Doctors, nurses, social workers, and assorted students were currently,
or soon would be, repeating this ritual on inpatient psychiatric wards all over the
country.
The chief of the unit, a psychiatrist, called the meeting to order and then
Marie, the head nurse, took over. She began by reviewing how each patient had
fared the night before. When she came to Samantha, a forty-year-old, single
woman with chronic schizophrenia, she paused and sighed before beginning,
“Samantha Green, stable on 6 milligrams of Risperidal, she slept well last night
and is ready for discharge today. Jo Anna, do you want to fill everyone in on the
discharge plan?” she asked the senior social worker.
“Sure. It’s a real gem.” Jo Anna answered sarcastically. “Samantha is going
back to her parents’ house and has an outpatient appointment with her doctor set
for a week from today. Mr. and Mrs. Greene are picking her up at noon and she’s
walking out the door with a one week supply of medication.”
“You don’t sound too pleased with the plan,” I commented.
“It’s nothing personal,” she replied, knowing that Samantha and her parents
also had an appointment with me for a family meeting. “The plan is alright, its
Samantha I’m not pleased with!” She paused, and then added, “Look, we all
know what’s going to happen. Call me cynical, but I’ll bet you ten dollars she
stops taking her medication before the end of the month and she’ll be back here
before you know it. She needs long-term hospitalization, not another trip through
the revolving door.”
Samantha had been admitted to the hospital four times in the past year. Each
episode of illness was triggered when she secretly stopped taking her
medication. Her parents would notice her talking to herself and start to worry
that she was not taking her pills. Her mother would then ask if this was so, and
Samantha would invariably deny it even though she had not taken them for
weeks. By the time the truth came out, it was usually too late and she needed to
be hospitalized.
To my ears, Jo Anna’s lack of faith in Samantha, her parents, and in me was
neither cynical nor insulting. Given Jo Anna’s experience and perspective, she
would have been foolish to expect anything more than she did. However, if Jo
Anna knew what I knew, she might have shared my optimism for Samantha and
her family.
I knew why Samantha didn’t want to take psychiatric drugs. It had taken
some effort to uncover the true reasons, but with that knowledge and a good idea
of what Samantha wanted out of life, I knew I could help her stay on her
medication, in treatment, and out of the hospital. But Jo Anna and the rest of the
hospital staff hadn’t learned what I had because they were focusing on other
things.
 In the climate of managed care and increasing advances in drug therapies for
serious mental illness, mental health professionals working in hospitals have
become increasingly specialized. Psychiatrists evaluate health and symptoms
and order medications. Psychologists working on inpatient wards typically
perform psychological assessments and, less often, do therapy. Nurses dispense
medications, monitor patients’ health and safety, and provide education about the
treatments received. Social workers evaluate the patients’ discharge needs and
make arrangements for outpatient treatment and residence. As a psychologist
working with the seriously mentally ill, I know a good deal about the
medications used to treat the disorder but I don’t prescribe them. My job is
different. Understanding the person and how the illness has affected his sense of
self and goals is one of my areas of focus. And that is why I was optimistic about
stopping the revolving door Samantha was stuck inside.
Unlike the others, I knew how Samantha experienced being ill and what she
thought about the drugs we were “pushing” on her. I also had a clear
understanding of what it was she wanted out of life, and that knowledge had
helped me to get her to agree to a trial of the medication as an outpatient. Unlike
the other times she’d been hospitalized, she was not agreeing to take the
medicine to placate us so she could get out; she was agreeing to continue (for a
time) to see if it could help her achieve one of her goals. In other words, I had
been doing a lot of listening, and what I had learned gave me a foothold with
Samantha and reason to have hope.

Building a Treatment Agreement

The cornerstone of building a treatment agreement that will work and outlast
your direct involvement is cut from the quarry of your loved one’s sense of who
she is, what she believes she is capable of doing, and what she wants out of life.
Unless you know its shape, color, texture, and strength, you will be unable to
build on this foundation. Each stone you lay will topple and fall to the ground
unless you have listened and learned about her experience of these things.
Specifically, you want to ask about her:
beliefs about having a mental illness
experience and attitudes about medication
concept of what she can and cannot do
hopes and expectations for the future

In the next three chapters I will show you how to put your knowledge of
these areas to practical use. But before we get there, you have to know your
loved one’s answers to each of these questions. And because serious mental
illness often changes the way people communicate with one another and what
each person wants to talk about, there are some common pitfalls you’ll need to
avoid. The best way to do that is by learning how to use reflective listening.

Reflective Listening
We all know how to listen. But I am not talking about everyday listening.
I’m talking about reflective listening, which is very different.

When you’re doing it right, you’re asking a lot of

questions. You sound like a journalist conducting an
interview.
Reflective listening has as its sole purpose understanding what the other
person is trying to convey and then communicating your understanding back
without commenting or reacting in any way. It is an active, rather than a passive
process and your role is purely that of a listener who wants to get it right. When
you’re doing it right, you’re asking a lot of questions. You sound like a journalist
conducting an interview. You don’t have an axe to grind. I’ll give you an
example of how and why something that seems so simple doesn’t come
naturally.
All my life people have told me I am a naturally good listener. As a
psychotherapist, I pride myself on my ability to listen and understand other
people’s experience. But everything I thought I knew about listening was put to
the test the first few times I tried to converse with people in denial about having
a serious mental illness.
I was 23 years old when I took a job as a “psychiatric technician” (a.k.a.
nursing aid) on an inpatient psychiatric ward at the University of Arizona
Medical Center. My brother Henry’s first psychotic episode had occurred less
than a year before, and despite his rambling speech and crazy ideas, I could still
understand him. My experience with my brother had given me a lot of
confidence. I had listened to many bizarre things. I could do this.
As a psychiatric technician I was responsible for assessing, among other
things, how agitated, depressed, elated, suicidal, or dangerous my patients were.
I was also charged with determining whether my patients were following the
prescribed treatment plan. Every conversation had a hidden agenda.
My very first admission evaluation was with Barbara, a forty-two-year-old
woman who was in the throws of a grandiose delusion and irritable manic
episode. She was talking a mile a minute about her power to read minds, her
supernatural abilities, the alien implant in her brain that had given her these
powers, and the fact that she didn’t need to be in the hospital. She was very
angry about being there. With a bright-red, hospital-issued clipboard on my
knee, I diligently started with the list of questions that were printed neatly in
rows on the evaluation form.
“Can you tell me why you came to the hospital?”
“Can you tell me why you came to the hospital?” she mimicked with disdain,
effectively making me feel humiliated for being a rookie.
“I am sorry. You were brought here by your husband. That’s right, isn’t it?” I
quickly countered, trying to recover my composure.
“I am sorry. You were brought here by your husband. That’s right, isn’t it?”
she echoed sarcastically.
Stating the obvious, I said, “It sounds like you don’t want to talk right now. I
am sorry, but I have to get through these questions.” I pleaded with her despite
the fact that I was feeling even more humiliated and was also starting to get
angry.
“I don’t give a shit about your f__king questions!”
“I’m sorry, but I really do need to get through these questions.”
“Grow up, little boy. You better realize who you’re dealing with here. You
don’t know what you’ve gotten yourself into and you are in way over your head.
Way over your head. Maybe I’ll have your head. I could you know. It’s as easy
as snapping my fingers or blinking an eye or squashing the wings of a butterfly!”
she shouted in rapid fire before bursting into hysterical laughter.
My agenda was moot and my face a bright shade of red. I know, because she
made a point of telling me as I was excusing myself and trying to walk, not run,
out the door. I was scared and angry. I went to the nurses’ station and plopped
down next to Nancy, the charge nurse.
“You got that done fast,” she said incredulously.
“Not really. I didn’t get much done at all.”
“She wouldn’t answer your questions?”
“No. All she did was mimic my every word and threaten me.”
“Threaten you?!”
“Not exactly. At least not in reality. She was threatening me with her God-
like delusional powers.”
“Well, it seems like she may not be able to answer these questions right now.
What did you learn about her from just sitting in the room?”
“Well, she’s angry and doesn’t want to be here. She’s in denial. She’s manic,
irritable, and grandiose. And she doesn’t want to talk to me. Maybe someone
else should give it a shot?”
“No. She’s your patient. I just gave her some medicine . Give her a couple of
hours to calm down a little, then try again. Only this time don’t bring in the
admission form. Start by asking her if there’s anything she would like to say. Let
her talk about why she thinks she shouldn’t be here and see where it goes. Ask
her questions about that. That seems to be where she’s at. Look for an opening to
tell her you’re sorry she’s here.”
“God knows I’m sorry she’s here!” I said, joking, and feeling better because
I saw the wisdom in Nancy’s advice.
I followed her suggestions and ultimately learned quite a bit about Barbara.
But it took putting my agenda on the back burner so I could listen to what she
was feeling about being forced to be a “mental patient” in a psychiatric hospital.
I also was able to get my form filled out. Some questions were not answered, but
the essentials were covered. I will tell you more about Barbara later. But for now,
I want to focus on the other elements of reflective listening.

To do it right you have to drop your agenda. Your only

goals are to understand what your loved one is saying
and to convey that understanding.
It’s hard to listen reflectively in the face of all the distracting noise
ofpsychosis, especially if you are pursuing an agenda and trying to follow a
timetable. To do it right you have to drop your agenda, as I did with Barbara.
Your only goals are to understand what your loved one is saying and to convey
that understanding. This is very hard to do at first, but it’s not impossible and
actually gets quite easy once you unlearn your natural bad habits. Reflective
listening is a skill and, like any skill, once you know the basic principles all you
need to do is practice to get it right. To start, here are seven guidelines for
reflective listening.

7 Guidelines for Reflective Listening

1. Make it Safe
2. Know Your Fears
3. Stop Pushing Your Agenda
4. Let it Be
5. Respect What You’ve Heard
6. Find Workable Problems
7. Write the Headlines

1. Make it Safe
During the first few years he was ill, Henry never wanted to talk to me about
the medicine he was prescribed. He didn’t feel safe. As you will learn later on,
my brother and I argued a lot, for many years, going round and round on the
issue of whether or not he was sick and needed to take medicine. This happened
because we got into what I call the denial dance, which creates pessimistic
expectations about talking. Let me tell you about one of my first experiences
with this. My brother had just come home from the hospital and was doing well.
The medication obviously helped him. But within a day of his getting home, I
found the medicine in the garbage can. Naturally, I asked him why he’d thrown
it out. “I’m okay now,” he explained. “I don’t need it anymore.” This ran counter
to everything he was told in the hospital, so I made a point of reminding him.
“But the doctor said you’re probably going to have to be on this medicine for a
rest of your life. You can’t stop taking it!”
“He didn’t say that.”
“Sure he did! I was at the family meeting, remember?” I countered.
“No. He said I had to take it while I was in the hospital.”
“Then why did he give you a bottle of pills to take home?” I argued, trying to
prove him wrong.
“That’s just in case I get sick again. I’m fine now.”
“No. That’s not what he said.”
“Yes, it is.”
“Why are you being so stubborn? You know I’m right!” I said.
“It’s my business. Leave me alone.”
“When you got sick it became everyone’s business. And besides, I’m
worried”
“You don’t have to worry about me. I’m fine.”
“You’re fine now, but you won’t be if you don’t stay on the medicine.”
“That’s not what the doctor said!”
“Then let’s call him and I’ll prove it!”
“I don’t want to talk about it! Just leave me alone,” he said as he walked
away.
 With every dose of “reality” I tried to give him, Henry countered with more
denials. And with every go around, we both became angrier and angrier. I
thought he was being stubborn and immature. My accusations and threat to
prove him wrong made him even angrier and more defensive. My natural
instinct to confront his denial was completely ineffective and only made things
worse. We got caught in a cycle of confrontation and denial that pushed us
further apart and, not surprisingly, left my brother feeling that it was not safe to
talk with me about these issues. The end result of conversations like this was that
he walked away. The dance always ends in avoidance.
Henry said it best after one of our early arguments about whether or not he
had schizophrenia and needed to take medicine, “Why should I talk about this?
You don’t care about what I think. You’re just going to tell me I’m wrong and
need to see a shrink!”
It wasn’t until I was in training to become a psychologist that I finally
understood that my brother wasn’t simply being stubborn. Armed with more
knowledge and experience, I reflected on how I had talked to him and realized I
had played a big role in getting him to stop talking and start sneaking (e.g., when
he secretly threw his medicine in the garbage while claiming he was still taking
it). I made him feel unsafe. He knew that if he said he wasn’t sick and didn’t
need medication, I was going to argue with him. Sometimes I did it gently, but as
the years wore on and he became what mental health workers call a “frequent
flyer,” I was often harsh in my confrontation of his denial. Once, I even planned
an intervention involving several family members and Henry’s social worker. We
all, gently but powerfully, told him he was in denial. One by one we told him he
had schizophrenia and needed to take psychiatric drugs to get better. Now
imagine if that happened to you (assuming you do not have schizophrenia, which
was exactly Henry’s point of view). Imagine that this conversation followed on
the heels of dozens more like it. Would you really be interested in explaining,
once again, that there was nothing wrong with you and you didn’t need
medicine? No. Better to walk away or, if you can’t, to shut up and pretend to
agree in order to get the conversation over with quickly.

“I am sorry for not listening to you. I understand why

you don’t want to talk about this anymore.”
So how do we make it safe to talk? First, set aside a special time. It can be
over a cup of coffee, a walk, on top of a Ferris wheel! Anywhere. What matters
is how you introduce the conversation. If you’ve had arguments in the past, you
need to apologize and acknowledge that you made your loved one feel unsafe.
You can say something like, “I am sorry for not listening to you. I understand
why you don’t want to talk about this anymore.” And then normalize his reaction
to you by saying something like, “If I were in your shoes I would feel the same
way.” When you apologize for jumping in with your opinion (which I call
reactive listening) and admit you would feel the same way he does, you make it
safe to talk.
But there’s more. You have to promise to not do it again. “I want to hear
more about why you hate the medicine and I promise I won’t do anything but
listen and try to get a better understanding of your view on this. I promise not to
give my opinion.” You might be thinking, “Wait a minute! How can you help
someone in denial if you are not going to tell him the truth? Don’t you have to
help him see the problem and the solution?” Yes, you do. But not yet, and not in
the way you think.
Advice is a funny thing. It can be perceived as either welcome or
unwelcome, disrespectful, insensitive, and patronizing. What determines how the
advice will be received? Here’s an example. Women who have been pregnant
often complain about how complete strangers walk up to them and give them
unsolicited advice. Sometimes it’s humorous, usually it’s irritating. But almost
always, they ignore the free advice because it was uninvited and felt intrusive.
And yet, every woman I have talked to about this experience admits that she had
at least one friend or relative whose counsel she sought and listened to. That’s
the difference between solicited and unsolicited advice. Advice that has been
requested carries far more weight than unwelcome advice. So when you promise
to not give your advice because your main goal is to listen and learn, you gain
instant credibility. And I guarantee, as strange as this may sound, that you will be
asked for your opinion far sooner than you would like.
So apologize for not listening well enough, promise you will listen without
comment, and keep the promise. To succeed, you will need to discover why you
have been afraid to listen in this way, because if you don’t, the same fears that
kept you from reflective listening in the past will trip you up going forward.

2. Know Your Fears

Whenever I teach reflective listening to a new group of people I am
reminded how much more similar than different we are all. On the outside, all
sorts of differences jump out at me: the man in the business suit sitting near the
one in the “Guns Don’t Kill People, People Kill People!” t-shirt and torn jeans;
the large, loud woman and the meek, diminutive one. People of all shapes, sizes,
religions, races, and politics come to LEAP seminars because they all have a
deep desire to help a loved one who is in denial. They also have the same fear
about taking that first step. The fear is, “I will make it worse if I listen the way
Dr. Amador says I should.”
During these seminars I define reflective listening just as I did above. Then I
ask for a volunteer. Recently, I did this role-play with Gwen in Halifax, Canada.
Her job, as I explained it to her, was simply to listen to me as I role-played a
delusional patient, and then reflect back what she had heard. She looked
confident as I began the role-play. Speaking fast and sounding very angry and
scared, I said, “Look, Gwen, I am not sick, there’s nothing wrong with me. I’m
not taking that medicine because it will kill me, its poison. If you want to help
me, then help me with the people upstairs.”
“What about the people upstairs?” she asked without reflecting back what I
had just said.
“Every night at eight o’clock they walk across the floor of their apartment to
the bathroom. I hear them flush the toilet and I know what they’re doing! I’m no
fool! They’re communicating with the group that’s trying to kick me out of my
apartment. They’re the same people who have been trying to kill me!” Gwen,
who had been nodding as I explained the problem answered, “So it sounds like
the people upstairs are disturbing you. They’re making a lot of noise?”
Seeing that she was done, I asked the audience, “Did Gwen reflect back what
I said?” Immediately numerous hands shot up, and, one after the other, they
described how she had not. They saw what Gwen could not see in the moment.
Although she had responded in the form of a question, as I recommended, she
had not reflected back a single thing I had said. The closest she came was
mentioning that I was “disturbed” by the people upstairs. In fact, however, I
wasn’t disturbed, I was scared and angry and it had nothing to do with their
being “noisy” neighbors. The noise didn’t bother me; it was their use of the toilet
as a signaling device that had me upset!
The audience was able to see that she had not reflected back what I had said,
but they did not do much better themselves when several of them tried their hand
at it. Like Gwen, they omitted mentioning the “crazy” facts. The closest anyone
came was acknowledging that the toilet flushing was a signal to the other people
in the building who wanted “me” evicted. But they all avoided talking about my
denial, my belief that the medicine was poison, and the stranger paranoid
delusions (the conspiracy of fellow tenants who were planning my murder).
After reassuring my volunteers that I used to make the same mistakes with
my brother before I learned reflective listening, I modeled the correct way to do
it. Playing the role of the listener now, I said, “So, Xavier, tell me if I got this
right. You’re not sick and don’t need to take the medicine. What’s worse, the
medicine is poison. And the thing you want my help with has to do with your
neighbors. Every night at eight o’clock your upstairs neighbors walk into their
bathroom and flush the toilet to signal other people in the building. These are the
same people who have been trying to kick you out and also kill you. Do I have
that right?”
Not even halfway through saying this, I could see several people squirming
in their seats, shaking their heads, and frowning. “I know that many of you are
very uncomfortable with what I just said. What makes you so uneasy?”
“You’re reinforcing the denial!” one man practically shouted.
“You can’t tell this guy his medicine is poison. He’ll never take it!” Gwen
added.
“What else worries you?” I asked the group.
“You worsened the delusion; now you’re going to get drawn into it. He’s
going to want you to do something about his neighbors,” another man offered. A
woman, who I knew to be a social worker, raised her hand and said, “This goes
against everything I was taught. You can’t collude with a delusion like that.
You’ll reinforce it!”
“Was anyone feeling okay about what I did?” I asked the group. An elderly
woman in the front row raised her hand, slowly stood up, and said, “I thought it
was fine. He’s going to want to talk with you because you are talking about
what’s important. He doesn’t believe he’s crazy and thinks people are trying to
kill him, for gosh sake!”
“So why do you think the rest of them are so uncomfortable with my
reflecting all that back to him?” I asked.
She slowly turned around to look at the audience, then, turning to face me
again, she said simply, “They’re chicken,” and sat back down. After the laughter
subsided I thanked my unexpected accomplice and elaborated on her wise
observation.

When you’re facing someone who rigidly holds

irrational beliefs, you gain nothing by disagreeing.
First, I never agreed with his beliefs about being sick, the medicine, or the
paranoid ideas. By prefacing and ending my statements with questions (“Tell me
if I got this right.” and “Do I have that right?”), I was free to use my patient’s
own words. In no way did I challenge his beliefs. Why should I? He’s
delusional! Rather, I showed him, through my actions, that I wanted only to
listen to him and understand. I have never talked anyone out of a delusion, and,
to my knowledge, I have never talked anyone into one either. The point is, when
you’re facing someone who rigidly holds irrational beliefs, you gain nothing by
disagreeing. More important, you lose that person’s willingness to talk about the
problem.
There are, however, a few pitfalls you have to watch out for. One is when the
person asks, “So it sounds like you agree with me. Do you?” Or the flip side of
the same coin: “Why are you acting like you believe me?” Actually, these
questions offer an important opportunity, which I’ll talk about in the following
chapter.For now, I ask that you trust me and for the time being, focus on
uncovering what your fears are.

3. Stop Pushing Your Agenda.

I know your agenda is to help someone you’re worried about. And you have
specific ideas about how the help should come. But because the person in denial
is already expecting unwelcome advice for a problem he doesn’t believe he has,
you need to keep this agenda to yourself!When reflectively listening, the only
stated agenda you should have is your desire to listen and learn. When a person
trusts that you will not pontificate about what he should and should not be doing,
he will be more apt to agree to talk about certain “hot” topics (e.g., his refusal to
seek professional help). Agreeing on an agenda is easy if you follow the lead of
the person in denial. This is how I was finally able to engage Barbara. What she
wanted to talk about was how furious she was for being forced into the hospital
when she wasn’t mentally ill. If the person you’re trying to talk to is upset about
having to take medicine, ask him about his feelings, not about the medicine or
your belief that he should take it. You can say, “I’d like to understand why you
hate taking your medicine. Would you mind talking with me about that? I
promise I won’t pressure you or bug you—I really just want to understand how
you feel about it.” Try it once with any hot topic and see what happens.

4. Let it Be.
If the discussion turns into an argument and you feel the denial dance coming
on, stop! If your loved one becomes accusatory, saying something like, “You
don’t care about me, all you’re thinking about is yourself!” just let it be. Don’t
fan the flames.
Sometimes mental illness creates “thought disorder,” making it especially
difficult for others to follow the person’s train of thought. It’s annoying and
frustrating. When talking with someone who has thought disorder, or
disorganized speech, be careful that you don’t inadvertently impose order on the
chaos, because usually you will get it wrong. In other words, let it be and focus
on listening differently instead of on trying to impose order. Listen for the
feelings behind the words and reflect back the emotion. When you understand
the underlying emotions, you will discover what the person cares about most and
what motivates him.

5. Respect what you’ve heard.

When you make it a point to communicate your understanding of what
you’ve just heard without reacting to it, you convey your respect for the other
person’s point of view. You also deflate anger. When you echo what you’ve
heard without comment or criticism, you stop the denial dance dead in its tracks.
Think of it this way: Would you really be interested in hearing the opinion of
someone you’ve been arguing with if you felt he or she hadn’t listened to your
views?

6. Find Workable Problems

Everyone in denial, or with anosognosia, knows he has at least one problem.
The problem is you and everyone else who is telling him he needs help! He will
have other problems you can uncover as well. Understanding how the person in
denial sees himself and his beliefs about what’s not working in his life is the key
to unlocking the isolation and building a relationship with someone who
recognizes he is in trouble and needs help. A relationship with someone who can
lead him to that help is the only way he’ll find it as long as he is unaware of the
illness.
Consequently, you first need to learn what he thinks the problem is. How
does he define it? And what does he say he needs to fix it? Without
understanding what he thinks is wrong and needs to change, you will be
powerless. For example, my brother never agreed that he had schizophrenia, but
he did think that being forced into a psychiatric hospital again and again was a
big problem. I couldn’t have agreed with him more. Once you find a problem
you can work on together (e.g., Henry and I agreed that avoiding another
hospitalization was a good thing), you have common ground and leverage. It is
also vital that you find out what he wants out of life, in the short term and in the
long term, without being judgmental. You need to find out what it is that is most
important to him.

7. Write the Headlines

I started out by telling you that to do this right you need to approach your
loved one the way a journalist would. That means not only asking questions
without injecting your criticism or other opinions but also discovering a theme
and figuring out what the headlines are. So, after a conversation in which you’ve
been reflectively listening, think of the front page of a newspaper and literally
write down the headlines. If you can, write them down in front of the person (I
will give you examples of how to do this later), so that you know you are both
on the same page about what’s important to him.
So what are the headlines? The headlines are the problems the mentally ill
person believes he has (not the problems you say he has) and the things that
motivate him to change (those that are most important to him). Ultimately you
are going to work together on the problem as he defines it but link it to the help
you believe he needs. And you will do this by harnessing what motivates him.

To illustrate these listening guidelines, I offer the following two examples

from families I have worked with. The first is a good example of how not to
listen while the second provides an excellent lesson on how to do it right. Both
examples are drawn from my work supervising therapists in training on an
inpatient psychiatric ward. Because my students typically bring video tapes of
their sessions with families to our supervision meetings, I can comment on both
the therapist and the family members’ listening skills.

Ineffective Listening
It was 3 o’clock and Dr. Brian Greene, a second-year resident in psychiatry,
was meeting with Matt Blackburn and his parents. Matt is the twenty-six-year-
old man who lives at home with his parents about whom I first told you in
Chapter 1. As you may recall, he was admitted to the hospital believing he was a
close confidant of the U.S. President. He also believed that God had chosen him
as his special messenger to world leaders, that the CIA was trying to assassinate
him, and that his mother was trying to sabotage his mission (this last belief was
not entirely delusional).When he was admitted to the hospital, he also had
thought disorder (rambling disconnected thoughts strung together so that when
he spoke it was often difficult to make sense of what he was saying) and was
hearing voices. After two weeks of treatment at Columbia his speech was more
cogent and the voices had quieted down a bit thanks to the medication he had
received. He still had the same delusional beliefs, but the drugs helped relieve
the pressure he felt to act on them (e.g., go to Washington to meet with the
President). The meeting was called by Dr. Greene to discuss what Matt would do
after being discharged from the hospital.
“Mr. Blackburn, Mrs. Blackburn,” Brian said to each as he shook their
hands, “Please come in and have a seat.” Matt was already seated at the end of a
long table in the patient dining room. His mother circled the table to reach her
son and bent down to give him a kiss. Mr. Blackburn immediately sat down in
the nearest chair, which was also the farthest from Matt, and started asking
questions of Dr. Greene.
“I know we’re supposed to be talking about Matt’s discharge, but don’t you
think he needs to stay here longer? I don’t think he’s ready to come home yet.”
“There’s really nothing more we can offer him here, Mr. Blackburn,” Brian
answered. In truth, it probably would have helped Matt to stay another week, but
his insurance had run out.
“Well, I don’t think he’s ready and neither does his mother!”
“Hold on,” Mrs. Blackburn said, “I didn’t say that exactly. Of course we
want you to come home,” she said, directing her last comment to Matt. “We’re
just worried about what’s going to happen next.”
Seizing the opportunity, Brian began. “Matt has an appointment later this
week with a doctor in our outpatient clinic, he has enough medicine with him to
last until that appointment, and the hospital Day Program has accepted him. He
can start there as soon as the doctor has seen him.”
“This is exactly what I was afraid of,” Matt’s father said to his wife. Then he
turned to face Brian and added, “I don’t want to be negative, Dr. Greene, but
he’ll never go to that appointment and he won’t go to this day program you’re
talking about. He doesn’t think there’s anything wrong with him. We need a
better plan than this. Matt won’t take his pills and he doesn’t like hanging around
the people in these programs. He says they’re all crazy!”
“Matt, what do you have to say about all this?” Brian rightly asked.
“I said I’d go. I’ll go!” he responded loudly while looking down at the table.
“That’s what you promised us before, Matt,” his father said in a kinder tone.
“But when we get home you disappear into your room and you don’t go
anywhere.”
“It’s different this time. I’ll go! I just want to get out of here and get a job
and my own place.”
“Are you sure you’ll go?” his mother asked, looking worried.
“Yeah, Mom, don’t worry, I’ll go. I really will. Okay?”
Matt’s father didn’t look convinced, but his mother and doctor looked, if not
convinced, at least relieved by what they had just heard.
Let’s review the seven listening guidelines I gave above. Did Dr. Greene and
Matt’s parents:

1. Make It Safe?
 Brian and Matt’s family did set aside a special time to talk but did not make
the conversation “special” in the way I described above. There was no
acknowledgment of their differing views and no apology for previous attempts to
convince Matt he was in denial and mentally ill. No one explained that he or she
wanted only to hear Matt’s views on the discharge plan. And no promise was
made to refrain from giving unsolicited advice. Instead, the old argument was
immediately raised by his father and the battle lines drawn. The result was that
Matt got defensive and then did what you and I would have done had we, like
Matt, been through this a hundred times before. He lied and said he would go to
the appointment. He lied to get his parents and his doctor off his back and to get
released from the hospital.

2. Know Their Fears?

On the surface, Matt’s father and mother both appeared to be in touch with
the fear they felt going into this conversation. But they were not. They were
aware of their fear that their son would continue his career as a frequent flyer, or
revolving-door patient. But they had no awareness of the specific fear they had
about this conversation, which was that they would make things worse if they
did not make their views known once again.Although she did it more gently than
her husband, Matt’s mother also laid down the battle lines. She wanted her son to
stay in the hospital longer. She made it very clear she thought he was still very
sick. Both parents, and Dr. Greene for that matter, felt compelled by their fears to
once again tell Matt, as if hearing it once again would make a dent in his denial,
that he was ill and needed professional help. And yet, all three knew that Matt
was not going to follow up with the clinic appointment.
They could have talked about that with Matt directly. But to do that they
would have had to make it safe for him to talk, not let fear rule the conversation,
and stop pushing their agenda.

3. Stop Pushing Their Agenda?

Matt was about to leave yet another hospitalization, and his parents and
doctor knew he would not follow through with their recommendations because
he never had before. But that didn’t stop the three of them from pushing their
hopeless agenda anyway. Dr. Greene wanted to communicate the details of the
post-hospital treatment plans and “seal the deal” so to speak (even though he
admitted to me later that he knew Matt would never follow through with the plan
as it had been presented to him). Matt wanted to leave the hospital and was
willing, if that’s what it took, to take medicine for the time being. How long he
was willing to stay on the medicine was never determined because Matt did not
trust his doctor or parents enough to be forthcoming and reveal what his true
feelings were. Mr. Blackburn openly predicted that his son would stay on the
medicine for less than one week while Brian naively hoped that Matt would be
willing to follow doctor’s orders for months to come.
Mr. Blackburn was pursuing an agenda, which was trying to convince Brian
to hold Matt in the hospital longer. And although Mrs. Blackburn was focused
on the same agenda, she was preoccupied with her guilt and with not wanting to
hurt or anger Matt. And what was Matt’s agenda? No one asked, so we really
don’t know, although I found out later.

4. Let It Be?
Matt was not offering his opinion or saying he would not take his pills. At
least not directly. So there was little in the meeting for his doctor and parents to
react to. But his parents were reacting to things Matt had said and done in the
past. His father was angry from the start, not only because the hospital was
discharging his son, whom he felt was too ill to come home, but also because he
didn’t believe Matt was telling the truth. When Matt said he’d go to his
appointment and take his medicine, his father reacted essentially by calling him
a liar (“That’s what you promised us before, but when we get home you
disappear into your room and you don’t go anywhere.”). Although more subtle,
Matt’s mother also reacted to his reassurances with disbelief.

5. Respect What They’d Heard?

No one echoed back to Matt what they understood him to be saying. Matt’s
views on whether he was ill and needed treatment were not respected. There was
at least one missed opportunity. When Matt said, “this time is different,” his
doctor or parents could have replied, “So, Matt, I want to understand. You’re
saying this time is different. Is that right?” If such a question had been asked, not
with anger or sarcasm, but with genuine curiosity, Matt would have answered
yes, his defenses would have dropped a notch, and he would have told them
something very important. This time really was different for him. He truly did
not want to come back to the hospital ever again, certainly not the way he had
this time (his parents had called the police, who brought him to the hospital
against his will). And if they had echoed back what they heard and Matt had felt
they truly understood, a problem they all shared could have been identified.
They could have worked together to keep him out of the hospital. From Matt’s
perspective his parents were the reason, from their perspective it was the mental
illness. But they all agreed that no one wanted him to end up in the hospital
again (even the insurance company would have agreed to that!). This was a
missed opportunity to help Matt drop his defenses and turn down the volume on
everyone’s anger.Let me give you a feel for what I am talking about.
Brian was Matt’s doctor, and I was Brian’s supervisor, so sometimes I met
with the two of them together. During one of these meetings, Matt had described
the terror he felt when the police brought him to the hospital. He had never felt
so scared before. He never wanted to feel that way again. And he had grown
tired of being hospitalized again and again. I asked him why he thought his
parents had called the police, and he answered “because they think I’m sick.”
“But that doesn’t tell me why they would put you through this.”
“They think I’m sick and need to be in the looney bin, that’s why.”
“Let me ask the question differently. What’s motivating them to do this to
you? Do they hate you?”
“No.”
“Do they want to hurt you?”
“I don’t know. I don’t think so.”
“Then why would they call the police on their son?”
“They’re afraid, I guess.”
“Matt, let me see if I have this right. Your parents called the police to bring
you to the hospital against your will not because they hate you or want to hurt
you but because they’re afraid. Do I have that right?”
“Yeah. That’s it.”
“What are they afraid about?”
“They’re afraid I’ll get hurt.”
“Now, I know you disagree with them on this, but before we talk about that
let me see if I am following you so far. Your parents were afraid you would get
hurt so they wanted you in the hospital to keep you safe. Is that right?” He
nodded. “What does that tell you about how your mom and dad feel about you?”
“They love me.”
“So you have a big problem here don’t you. How do you convince your
parents to stop throwing you in the hospital? I mean, you can’t convince them to
stop loving you, can you?”
“No,” he said smiling.
“Then what?”
“I can’t convince them there’s nothing wrong with me. You guys have all
brainwashed them!” We both laughed at his reminder that people like me,
doctors, were at the root of his problem.
“No. And they can’t convince you that you’re sick. So there you are. What
could you work on together?”
“I guess reassuring them so they don’t get scared and call the police.”
 “How can you do that?”
“There’s nothing I could do to convince them.”
“Nothing?”
“Well, no, not nothing. I could take the medicine.”
“But if I understand you, you’re not sick. Why would you take medicine if
there’s nothing wrong with you?”
“To keep them off my back!” he said laughing.
This conversation, though valuable, would have been priceless had Matt had
it with his parents. But because they were afraid and unable to echo what they
heard, they missed a chance to find common ground with their son and work on
the problem they all agreed Matt had (i.e., hospitalizations against his will were
bad). By redefining the problem so that it was no longer about the question of
whether or not he was sick and needed help, and clarifying that he knew his
“misguided” parents were motivated by love, Matt could have translated the
impossible problem he had into one that was workable.

6. Find Workable Problems?

When it came to defining the problem, Matt, his parents, and Dr. Greene
were talking apples and oranges. Matt saw the problem as his parents, the police
who listened to them, and the shrinks who had convinced his mother and father
he was ill. His parents and Dr. Greene saw the problem as Matt’s being stubborn,
immature, and defensive. He was not taking any responsibility for the illness he
clearly had. On the other hand, Matt and I had easily found at least one workable
problem. We agreed that the only problem anyone would be willing to work on
with him was how to keep him out of the hospital.
Identifying a problem we could work on together opened up a way for us to
work as allies rather than adversaries. After his parents left, I briefly met with
Matt and Dr. Greene I said: “Well you know it’s your choice, Matt. You know
what I think, and I can’t force you to do something you don’t believe in. I
wouldn’t want to do that even if I could, unless, of course, you were in danger,
which you’re not in right now. I respect your right to make this decision for
yourself. I know you told Dr. Greene and your parents that you would stay on
the medicine. But if you change your mind, and if I had to guess I’d guess you
will since you don’t believe you’re sick, I hope you will pay close attention to
what happens next. It’s your life. Don’t just have an opinion about the
medication; prove to yourself whether your opinion is right or wrong.”
“I already said I’d take the pills!” he responded defensively, probably
because I was implying that I didn’t believe the reassurances he’d given Dr.
Greene and his parents.
 “Okay, I will take you at your word. But I have to say that if it were me, I
wouldn’t take the medicine.” Seeing that Brian looked mortified by what I had
just said, I asked him, “Dr. Greene, do you have something to say? You look like
you might have a different view on this.”
“Well, I don’t think you really meant that if you were in Matt’s shoes you
wouldn’t take the medicine.”
“That’s exactly what I meant.” Brian frowned and seemed to be searching for
words when Matt saved him by asking me, “So, you don’t think I need the
drugs?”
“I didn’t say that. What I said is that if I were you I wouldn’t take them after
I leave the hospital. Matt, you don’t believe you have a mental illness and you
feel strongly you shouldn’t be taking medicine for an illness you don’t have.
That sounds like common sense to me. Who would take pills if they didn’t think
they needed them? What would be the point? If I believed those things I
wouldn’t be planning on taking the medicine when people were no longer
looking over my shoulder. If I were in your shoes, I would say what it took to get
out of here and then follow my own compass. Isn’t that really where you are?
You can tell me and you will still go home today. It won’t change a thing.”
“I would never do that,” Matt said facetiously, a smile spreading across his
face. I smiled back as we both recognized and shared the truth of what he would
do once the door closed behind him.
“Hypothetically then, if you do stop taking the medicine, ask yourself these
three questions: What stays the same? What gets worse? What gets better? Write
it down like we’ve been doing while you were here. You know what I mean?”
“Yeah. The pluses and minuses.”
“Exactly. So you know what I’m talking about?”
“Yeah. It’s my life. I hold the key and it’s up to me to decide.”
“Right. Now, you’ve decided you really don’t want to take the medicine,
right?”
“Yeah,” he admitted sheepishly. “But I will anyway. Everyone wants me to,
so I will.”
“Well, I don’t know if everyone wants you to, but you know my opinion. I
hope that you will. But if you decide to stop, I want you to know I respect that
this is your life and your right.”
“Yeah, but you’ll think I’m stupid.”
“No, I won’t. But I might think you made a bad decision if you made an
uninformed decision.”
“You’re the doctor, you would know.”
“That’s not what I meant. You are in the best position to be the expert on this
issue. Be a scientist. Think of this as an experiment. Collect the data. Don’t jump
to conclusions one way or the other. Just pay attention to what happens when
you’re not taking the medicine. Ask people you trust how you seem when you’re
off medicine. Think you’d be interested in doing that?”
“I don’t know. I already know the answer.”
“Well, it seems everyone else already thinks they know the answer, too, and
most of them disagree with you. Here’s your chance to prove them wrong.”
“I’ll try to keep an open mind.”
“That’s all I’m suggesting. Anything else you want to talk about before we
stop? Any feedback for me?”
“No, I guess not.”
“Well, good luck.” I stood up, extended my hand, and added, “I hope I never
see you again.”
“Same here,” Matt replied. We both laughed as we shook hands. If I saw
Matt, it would be because he was back in the hospital. Keeping him out of the
hospital and in his life was something we both wholeheartedly agreed upon.

7. Remember the Headlines?

No one appeared to pay attention to the headlines, much less write them
down. Of course, writing down what Matt had to say would have been awkward
in this situation because his doctor and parents had never practiced this
technique with him. It’s true that Brian often took notes during their sessions, but
they were almost entirely about symptoms he was observing. He rarely recorded
Matt’s subjective experience of the problem (his parents, the police, and the
“shrinks”) or statements that revealed what was important to him, what
motivated him (staying out of the hospital, getting a job and a place of his own).
But it would have been easy to ask, “Is it alright with you if I write down what
you’re telling us is most important to you?”

Effective Listening
Dr. Ivan Kohut, a third-year resident in psychiatry, was meeting with Vicky,
the forty-five year old woman with manic depression you heard about in Chapter
2. Her husband, Scott was also present. Vicky had spent the last two weeks in the
hospital following a manic episode during which she took her two children on a
three-day road-trip to Mount Desert Island National Park in Maine.
The first night of the trip was especially disturbing because Scott had no idea
where his family had gone until Vicky called him at 11:00 p.m. to explain that
she wanted their children to experience the same spiritual awakening she was
having. God had instructed her to take them to the top of Cadillac Mountain
because it was the highest point on the East coast, and had told her that once
they were there he would come to them.
Having gone through two previous manic episodes with Vicky over the
course of their marriage, Scott figured out what was happening much more
quickly than he had in the past. During the phone call he begged her to come
home, but she refused, and when he told her he thought she was becoming sick,
she abruptly hung up the phone. Scott immediately called the police in the area
she had phoned from, but they told him there wasn’t much they could do except
to “keep an eye out for her car.” They suggested he call the National Park
Headquarters in Maine. With the help of Vicky’s psychiatrist, Scott was able to
convince the Park Rangers to intercept his wife when she arrived. He then flew
up to Maine, and after much cajoling and threats of commitment, she agreed to
return to New York and go to the hospital. From both Scott’s and Vicky’s
perspective the drive back was nightmarish. The children, as children often do,
were unconsciously running interference by misbehaving. Their fights and
tantrums together with Vicky’s rapid-fire speech and grandiose proclamations
made for an excruciatingly long drive home.
After greeting the couple, Ivan sat down and began by asking, “What would
the two of you like to talk about today? I have two things I’d like to put on our
agenda. How about you, Vicky?”
“When do I get out of here? That’s the only thing I’d like to talk about.”
“Okay. Scott, how about you?”
“Well, I have the same question. And I also want to talk about her
medications.”
“Anything else? Either of you?”
“No,” Vicky answered quickly.
Scott thought a minute, then said, “I suppose not, maybe more will occur to
me as we talk.”
“Good. My two agenda items are similar. I want to report on how I think
Vicky is doing and then ask her how she feels about the discharge plan. So that’s
basically three items: One, when does Vicky get out of here; two, my view on
how she’s doing, and three, Vicky’s opinion of the plan we put together for after
she leaves. If it’s okay with the two of you, I’d like to get the second item out of
the way first.” Vicky and Scott both nodded their approval. Addressing Vicky,
Ivan said, “I think you are doing much better than when we first met two weeks
ago. Back then you were sleeping about two to four hours a night, your thoughts
were racing, your speech was pressured, you were euphoric, extremely irritable,
and you had some unusual thoughts about God and supernatural abilities you felt
he had given you. Right now your sleep is back to normal, your thoughts aren’t
racing, and your speech isn’t pressured. You don’t need me to describe your
mood. How would you describe your mood over the last week?”
“Kind of constricted. I’m not as happy and I don’t get irritated so easily. I’m
not depressed.”
“Do you miss the happy feeling?”
“You know I do, Dr. Kohut! Wouldn’t you?”
“Absolutely.” Noting the smile on her face, he added, “But it looks to me like
you can still feel happy. It’s the extreme happiness, the high, that’s gone. Yes?”
“That’s true,” she answered.
“So, in a nutshell, I think you’re ready to go home the day after tomorrow.”
Vicky looked surprised and said, “Well, that answers my question. Why
didn’t you tell me that this morning when we met?”
“I suppose you don’t remember, but I told you I had to discuss it with the
team first. I wanted everyone’s input. We generally make these decisions by
consensus, and the consensus is that you’re much improved and can go home.
Scott, any opinion about this?”
“Not really. I expected it. I see that she’s getting back to normal. But I guess
I’m not clear on what happens next. What about the medications, and what can
we do to keep this from happening again?”
“Good segue to the last item on our agenda—what happens next with respect
to your treatment.” Ivan answered, addressing Vicky once again. “I’d like to see
you in the clinic once a week for the next couple of months, and then maybe
drop down to once a month. I don’t want to change anything about the
medication you’re taking right now. I’d like to see how you do over the next
couple of weeks, then re-evaluate and discuss if we should make any
adjustments. What are your thoughts about what should happen next?”
Vicky laughed and asked, “Does it really matter? Everyone thinks I should
stay on medication.”
“Of course it matters!” Scott replied, a little irritated and defensive.
“You’re the boss here, even if it doesn’t seem that way now,” Ivan added.
“What are you talking about?” Vicky asked.
“I am talking about the fact that what your husband and I think you should
do doesn’t amount to a hill of beans compred to what you think you should do. If
you believe that the medications have done their job and want to stop taking
them, you will. I can’t stop you and neither can your husband.”
“Then why am I in this hospital? I don’t feel like the boss.”
“That’s because you lost a lot of control when the bipolar disorder you have
flared up. It caused you to do things that worried a lot of people and motivated
them to take control away from you. But now you’ve got the illness under
control again and you’re back in the driver’s seat.”
“If that’s true, then I don’t want to take these drugs for more than a month or
two.”
“So, if I understand you, you don’t want to take these drugs for more than
two months at the most. Right?”
“Yes.”
“Okay.”
“Wait a minute!” Scott interrupted. “That’s how she got into this mess in the
first place. Every doctor she’s seen, including you, has told us she will very
likely have to stay on these medications for the rest of her life.”
“If she doesn’t want to have another flare-up, yes, that’s true. That is my
opinion. Also, the medications will help to keep her from becoming depressed
again. I’m not contradicting myself. I’m saying something else. It’s Vicky’s
choice, not yours or mine. But the choices you make,” he added, looking at
Vicky, “will have consequences.”
“You make it sound so ominous,” she replied.
“I think the consequences of stopping your treatment will be very negative.
You know what my professional recommendation is and what your last
psychiatrist felt. You know what your husband and your family would like. But
what you believe is what you will ultimately do. And I have to respect that. But I
am curious about one thing. Why don’t you think you will need the medications?
Just this morning you told me they’ve been very helpful over the past few
weeks. Were you just ‘yessing’ me or did you really mean it?”
“I meant it. They’ve done their job. But I’m better now.”
“So you see yourself as cured of bipolar disorder,” Ivan stated.
“Well, I’m not sure I have manic depression. But whatever was going on,
yes, the medications helped calm me down. So,yes. The problem is solved. Why
would I want to be on these drugs for the rest of my life when the problem
doesn’t exist anymore?”
“So what you’re saying,” Ivan began, “is that you had some kind of problem,
not manic depression, that the drugs helped you with. And now that the problem
is solved, you don’t want to keep taking the medication. Right?”
“Right.”
“Want my opinion on what you just said?”
“I already know it.”
“Actually, it may surprise you.”
“Shoot.”
 “What you propose is certainly possible.” Ivan said to the couples’ surprise.
“How about we make a deal. If you decide, six months from now, that you still
want to go off your medications, we can give it a try. But I won’t have any part
of it if we’re not meeting regularly.”
“Why would you do that? You already told me you think I have to stay on
these medications forever.”
“Because your opinion is the only one that ultimately determines whether or
not you stay in treatment. I am willing to work with you to prove what you
believe even though I don’t believe it. I have only two requirements: that you see
me regularly, and that you keep a daily diary during the time we’re lowering
your dosages.”
“Why a diary?”
“So you have a record of how you were thinking and acting during the time
your medication was lowered. It will also help you to pay attention to the
consequences, not only for you but for your family.”
“I would be willing to do that,” Vicky replied.
“Okay, then let’s write the deal down so we all remember. You will stay on
the medications for another six months. If at that time you still want to
discontinue the drugs, we do it together,” he said aloud as he wrote down his
words. Then he added as an afterthought, “I’d like to include Scott in some of
those meetings as well if that’s okay.”
“Sure,” she answered.
“And if we go that route, you will keep a daily diary. We can talk more about
what I’d like you to record—cross that bridge when we come to it. Do I have it
right? Is this what we agreed to?”
“Yes,” both Vicky and Scott replied.

1. Make It Safe
Did Ivan make it safe for Vicky to talk? Yes. He made it clear that he wanted
to hear Vicky’s views on the treatment and was actually reluctant to tell her his
views, which she already knew. She understood she could talk about her belief
that she was not sick and didn’t need medicine without her doctor’s contradicting
her. She also knew that Ivan would keep her husband from jumping down her
throat. Ivan made it clear that her opinion was the only one that really mattered
at the moment. It was more important than his and Scott’s opinion.

2. Know Your Fears

Scott got nervous and went on the attack for a moment when Ivan
acknowledged, without argument, Vicky’s desire to stop taking the medicine.
Otherwise, Scott did a great job of listening passively as his wife and doctor
discussed her views on the problem and what she needed. In previous meetings
Ivan had worked with Scott to help him recognize where he was powerless and
where he had power. Where he was powerless was in convincing his wife she
had manic-depression and needed to be on medication for the rest of her life. He
hadn’t succeeded in four years, and Ivan helped him to recognize what was
obvious: He wasn’t going to suddenly succeed now by continuing the argument.
Where he had power was in repairing their relationship so that she would feel he
was once again her ally, on her team, and that they were working on the same
problems together.
Ivan was clear about his fears and understood that he had nothing to lose by
listening to Vicky’s views. He knew he would not harm her by allowing her to be
honest, by not contradicting her views without her permission (he always asked
her if he could give his opinion before he gave it), and by actively listening.

3. Stop Pushing Your Agenda

Not only did they agree on an agenda, but over the course of their
conversation Ivan repeatedly checked back with Vicky and her husband to
ensure that there wasn’t anything else either of them wanted to talk about. The
main agenda was understanding Vicky’s views and working with how she
experienced all this.

4. Let it Be
Ivan did not react emotionally to Vicky’s statement that she wanted to stop
taking medication. Neither did Scott, except during the one brief moment when
his fears caught him off guard. Neither Ivan nor Scott jumped in with their
opinions to refute Vicky’s statement that she was no longer ill and planned to
stop taking the medication. They let her opinions stand. They respected her point
of view. When Ivan did offer his opinion, he empowered Vicky by first asking if
it was okay with her for him to tell her what he thought.

5. Respect What You’ve Heard

Ivan did this repeatedly, often rephrasing things Vicky had said to ensure that
he “got it right.” He prefaced his reflective statements by indicating that he just
wanted to be sure he understood her correctly (“Let me see if I got this right?”),
used her words without comment or criticism, and then asked her if he’d
understood correctly. He acknowledged that he understood and genuinely
respected her point of view.
6. Find Workable Problems
Vicky felt that the medications were a short-term treatment, like antibiotics
for an infection, rather than a long-term treatment, like insulin for diabetes. The
good news is that Vicky had some insight, nowhere near as much as her family
and doctor would have liked, but enough to work with. She understood that the
drugs helped her when she had symptoms. However, she didn’t understand that
the drugs could also prevent the symptoms from returning when she was feeling
well.
Now that she was feeling well, Vicky wanted to stop taking the medicines.
Although Ivan understood that statistically it was highly unlikely she could stop
without getting sick again, there was a very, very, small chance that she could.
He also understood that until the day Vicky “owned” the treatment, until she
found a reason that made sense to her to stay on the medicine, she never would.
Her problem, which he was willing to help her with for the time being, was
taking the medicine. But he would work with her on this only if she stayed in
therapy with him, allowed Scott to come to some of the sessions, and took
responsibility for tracking what happened when she stopped taking the medicine.
By agreeing to work with her on the problem as she defined it, he kept her in
therapy and on the medication for a longer period of time than if he had insisted
the treatment was “a life sentence,” as she had once described it. He also laid the
foundation for her discovering reasons to continue in treatment.

7. Remember the Headlines

Ivan not only wrote down what they had agreed to do about the medications
but asked permission to do so before starting. This was important because it
emphasized Ivan’s wish to collaborate rather than pontificate. By asking, he also
underscored that Vicky would be in charge after she left the hospital. He wasn’t
afraid to acknowledge his own powerlessness. By doing that, he reminded Vicky
that the choice to continue treatment was hers, as was the responsibility for the
consequences that would follow her decision. The headlines were that she
wanted off the medications and that she understood they helped her when her
thoughts were racing, when she wasn’t sleeping, and when she got tired out
(these were the things she saw as problems even though she didn’t think she had
an illness).
Listening is an active process. It involves asking many questions and not
reacting to what you are hearing. You should think of yourself as a scientist
trying to unravel a mystery. Your task is to gain a clear idea of what your loved
one’s experience of the illness and treatment is. Once you know how he
experiences the idea of having a mental illness and taking psychiatric drugs you
will have acquired vital knowledge you need in order to build a treatment
agreement.

The Danger of Listening Reflectively

Very likely the person you are listening to reflectively and without judgment
will make the mistake of thinking you believe what he is telling you (about not
being sick, not needing medications, or the CIA conspiracy). He may ask you to
help him catch the CIA in the act or talk to his parents so he can go off
medications since you seem to agree he doesn’t need them. I touch on this
problem at various points in this book—it’s why most people are afraid of
reflective listening—but let me introduce you to two new tools: The Delaying
Tool and the Three A’s For Giving Your Opinion that will allow you to use
reflective listening without falling prey to these traps. I will talk about these both
again later, but let me lay it out for you here concisely.

The Delaying Tool

You want to delay giving your opinion about controversial topics (delusions,
desire to not take medicine, etc.) for as long as possible to first preserve the
alliance you are building, delay the hurt your answer will cause and perhaps
most importantly, shift the locus of control onto the person who is asking for
your opinion. After all, when you give it, he has no one to blame for hearing
your point of view but himself, especially if you have delayed giving it because
you have been genuinely reluctant to do so. So, in terms of learning to LEAP, the
longer you are able to delay giving your opinion, the more the other person will
have experienced you as respecting his and, therefore, the more obligated he will
feel to respect yours (or at least hear you out.) If he has to solicit it, the more in
control he will feel and, therefore, the less defensive he will be when he hears it.
And the harder he has to work for it, the more it will matter when you finally do
give it. For these three reasons, your opinion will have more weight.
When you delay, try the following: first honor the question by promising to
answer, try and change the topic and ask permission to do so. Here are some
examples that include all three elements (the promise, the diversion and the
request for permission to change the topic):
I promise I will tell you whether I think you are sick. But first, if it’s OK with
you, I would like to hear more about _________ . Would that be all right?
I will answer you question about the CIA. Can I ask you to give me some
more details about what happened last night first? Would that be OK?
 You’ve asked me many times whether I think you are delusional. I promise to
answer. But if its OK with you, before I tell you what I see, could you tell me
more about______________________?
I promise to answer your question about whether you should stop taking
medicine. Before I do, I want you to know that I think your opinon about this is
far more important than mind. So can you tell me all the reasons why you want
to do that?

The “A” Tools for Giving your Opinion

Sometimes, even after you’ve listened and empathized, the other person
won’t ask you what you think. This is rare in my experience, and if it happens to
you I want you to consider two possibilities. One is that you have not used the
tools you’ve learned as effectively as you could and the other is that the person
likes talking so much that he simply isn’t interested in what you have to say. If
it’s the latter, you can ask if he or she would be interested in hearing your
perspective. You can say something like, “After listening to you, I have a much
better picture of your views on this. Can I tell you what I think?” I’ve never
heard of anyone who’d used the listening and empathy tools receiving a “no” in
answer to this question, and I don’t believe you will either.
But whether you have been asked for your opinion repeatedly and delayed
giving it, or you have had to offer it because the person—despite being cooled
down and feeling listened to and respected—doesn’t ask, the way you deliver
your opinion will determine whether it throws more fuel on the fire or continues
to douse the flames. If you want to get past the impasse, there are three new tools
you now need to add to your tool belt. I often use all three of them together, but
sometimes you need only one or two to get the job done. I call these my “A”
tools both to make them easier to remember and because they are A-list
powerful tools you can use whenever you’re arguing or negotiating.
I like to think of these tools as soft like felt or like a goose down pillow.
Sometimes I think of them as airbags. In other words, they are tools that help to
soften the blow and save lives— or at least relationships. The three As are
apologize, acknowledge, and agree.

APOLOGIZE
Apologizing may be the last thing you think you need or want to do at this
point. After all, the other person has been asking you (probably more than once)
what you think. You’re only doing what she’s asked. In fact, you may think that
if you need to apologize for anything it would be for having delayed so long. But
that’s not the way it works.
 Keep in mind the reason you delayed in the first place: because you’re aware
that when you do give your opinion it’s likely to damage the trust you’ve so
carefully been building. When you finally admit that you really still don’t agree,
the other person is likely to be disappointed, to feel somehow betrayed, and to
get angry all over again. So what you need to indicate is that you understand all
this and you apologize, because you truly wish that what you believe didn’t
make her feel that way.
Notice that I’m not suggesting you apologize for the opinion you’re about to
offer (e.g., Yes I think you probably do have bipolar disorder), just for the
feelings it might engender. You’re not saying I’m sorry I feel this way but rather
I’m sorry that what I have to say may make you feel such and such. What you
might say is something like, “Before I tell you what I think about this, I want to
apologize because what I think might feel hurtful or disappointing.”
Understanding that difference ought to make the process easier for you, but if
you still feel unable to apologize, you’re probably still too angry, and you need
to take a few deep breaths, step back, if only for a moment, and think about why
you’re doing this in the first place.
And when you do apologize, just be sure that you don’t use the word “but,”
as in, “I apologize if this is going to upset you, but, I think…” I mentioned this
but want to emphasize it here again because it is so important. People who are in
a disagreement typically stop listening when they hear the word “but.” It’s as if
you had pushed a button on a remote control and shut off their hearing aid. Not
only are they incapable of hearing you; but the most likely outcome is that you’ll
just revert to “butting” heads all over again.

ACKNOWLEDGE
What is it that you need to acknowledge? Certainly not that you still think
you’re right (although, ultimately, that’s more or less what you’re going to be
saying). Rather, you need to acknowledge that you’re not infallible and you
might be wrong– even though you clearly don’t think so. (And you’re not going
to say that!)So, after you apologize, say something like, “Also, I could be wrong
about this. I don’t know everything.”
When you do that you are, first of all, indicating that you are flexible. If you
can be flexible, you’re more likely to trigger some flexibility in the other person.
If you’re rigid and dogmatic, you’re equally likely to trigger that. Remember that
LEAP is all about giving in order to get.
Acknowledging that you could possibly be wrong is also a way to convey
respect because you are not insisting that you are wise and the other person is
ignorant. It’s the same principal Benjamin Franklin wrote about in his
autobiography —when he said, “I made it a rule to forbear all direct
contradiction to the sentiment of others, and all positive assertion of my own. I
even forbade myself the use of every word or expression in the language that
imported a fix’d opinion…for these fifty years past no one has ever heard a
dogmatical expression escape me.” If it worked for Benjamin Franklin, who
broke many seemingly insurmountable impasses, it can work for you.

AGREE
I’ve already said that you’re not going to be agreeing with the other person’s
opinion. So what is this about? Here, you’re going to ask her to agree that you
disagree. In other words, you’ll be indicating that you respect her opinion and
hope that she’ll respect yours: “I hope we can just agree to disagree on this. I
respect your point of view and I won’t try to talk you out of it. I hope you can
respect mine.”
Using the three “A” tools is far easier than it might appear at first glance.
When my brother Henry asked me if I thought he had schizophrenia I said: “I’m
sorry because this might hurt your feelings. I want you to know I could be
wrong, I don’t know everything, but yes, I think you might have schizophrenia. I
hope we don’t have to argue about this: I respect your opinion on this and I hope
you respect mine. Let’s just disagree on this.” Did you see the 3 A’s?
Here is a shorter example. “Should you take the medicine? I’m sorry I feel
this way and I could be wrong, I just hope we can agree to disagree on this. Yes I
think you ought to try it for at least a few months and see how it goes.”
The point is to be humble, help the person save face and preserve the
relationship you’ve been building. Remember, you will win on the strength of
your relationship rather than on the strength of your argument.
 7
Empathize
A few years after he first became ill, my brother and I were talking about one of
his medications, Haldol. He hated Haldol (a.k.a. haloperidol) because it made
him feel “stiff” and “groggy.” As I listened to his complaints, I understood for
the first time some of the frustration he felt about taking these medications. I
recall saying something along the lines of, “I can see why you don’t like these
drugs. They make feel stiff and groggy.” The conversation stands out in my mind
because for the first time we were calmly talking and listening to one another
about the medication instead of arguing.
Usually our conversations on this topic were a disaster. I would hold my
ground and pontificate about why he must take the medications prescribed for
him and about how immature it was of him not to accept the fact that he was ill.
Brothers can often be that way. But after working for a year as a therapy aide on
an inpatient psychiatric ward, I was beginning to learn how important it was to
listen. As I listened, I couldn’t help beginning to empathize. I love Henry, and
when someone you love is in pain, it’s hard not to empathize. Learning to listen
led to empathy. And my empathy ultimately resulted in my brother’s showing a
real interest in my thoughts about the illness he felt he did not have and the
medications he was sure he did not need.
These are among the most important feelings to connect with because they
are the feelings that drive people with mental illness away from their loved ones
and therapists.
When you feel empathy and convey it, your loved one will very likely feel
understood and respected. Whenever you convey that you understand how your
loved one is feeling, his or her defensiveness will decrease and openness to your
opinion will increase. If you have followed the advice I gave in the previous
chapter, if you have listened reflectively to your loved one’s experience of his
illness and the prescribed treatment, you will naturally begin to empathize. But
communicating your empathy can be tricky when you’re talking to someone
who has a psychotic illness. Many people worry that they should not empathize
with certain feelings, such as anger about being forced to take medicine, fear of
treatment, or feelings connected to delusions. In fact, these are among the most
important feelings to connect with because they are the feelings that drive people
with mental illness away from their loved ones and therapists.

Conveying empathy
You must first learn what it is you should be empathizing with. The short
answer is just about any feeling your loved one is willing to reveal. But there are
certain feelings that are particularly important for you to understand. Whether
they are rational (“I am so sick and tired of everybody telling me I am sick!”) or
irrational (“The C.I.A. has implanted microchips in the capsules so they can
track me!”), you want to be sure to empathize with:
Frustrations (about pressure from others to take medication and about
personal goals that have not been met).
Fears (about medication, being stigmatized, and failing).
Discomfort (attributed to medications, such as gaining weight or feeling
groggy, slowed down, less creative, stiff, etc.).
Desires (to work, get married, have children, return to school, stay out of
the hospital, etc.).

A magical thing happens when you combine reflective listening with

empathy. Your loved one will ask you what you think! I can almost guarantee
this will happen. For example, remember the conversation I had with Matt and
his doctor? Matt, who everyone knew didn’t think he was mentally ill, had just
insincerely promised to take his medicine when he left the hospital. And I said
“Okay. I will take you at your word. But I have to say that if it were me, I
wouldn’t take the medicine.” He opened up to me then and was more honest
about not wanting to take the drugs. When he did that, I focused on empathizing
with his feelings about taking them. I said “You sound angry that everyone is
pushing these drugs on you. Are you?” He agreed, then eventually asked me,
“So, you don’t think I need the drugs?” You saw my answer to that question, but
what you didn’t know was that the time was ripe for me to give him my opinion.
He was about to leave the hospital, and it was my last chance to talk with him.
Most of the time, however, when someone asks my opinion about a delusion,
about whether I think he’s mentally ill, or if he needs medications, I delay
answering as long as possible. For example, one patient was convinced that his
mother was poisoning his food. I listened and empathized, and he then asked me
if I believed it was actually happening. Our conversation about this began with
my saying, “So, if I understand you correctly, you mother has been poisoning
your food. Do I have that right?”
“Yes!”
“How do you feel about that?”
“Are you serious?! How would you feel?”
“I would feel, and I think anyone would feel, scared and angry,” I replied.
“So, do you believe it? Are you going to do something about it?” he asked.
I didn’t answer his questions at that point, although I did later. I delayed
answering as long as I could. I will be getting to the reasons for that and explain
how you can delay answering without frustrating the questioner. For now,
however, the take home point is: Listen and empathize and you will be asked
your opinion. And that is ultimately what you want to have happen because an
opinion that has been asked for carries far more weight than one that is forced on
a person who is arguing with you.

Dolores
Dolores, who has had schizophrenia for nearly 20 years, told me that she
didn’t need medication or a day treatment program because there was nothing
wrong with her. What did Dolores feel she needed? More than anything else, she
wanted a job. She was frustrated that she did not have a job and with her family,
who told her she couldn’t work. Her family was being reasonably pessimistic.
The fact is that Dolores had been unable to keep a job for more than a few days
at a time and she had been employed only a handful of times over the past
twenty years.
By the time I met her, Dolores, like many individuals with serious mental
illness who don’t know they’re ill, had been hospitalized many times. In her
case, it was about two to four times a year. Although she almost always signed
herself into the hospital voluntarily, she would do this only after receiving
tremendous pressure from her family. When I talked with her about what she
planned to do when she left the hospital this time, she told me simply, “Get a
job.”
If you were her therapist and discussing her plans, you might be tempted (as
I was early in my career) to focus on the irrationality of that idea. After all, she
had a long history of poor adherence to her medication regimen, and there was
no reason to believe that her long-standing pattern of unemployment was about
to change. You would understandably think that talking about her reluctance to
stay in treatment would be more beneficial to her than encouraging or agreeing
with her irrational plan for herself. The problem was, Dolores had absolutely no
interest in talking about drugs, day treatment programs, or doctor’s
appointments. Would you want to talk about those things if you were not ill? So,
instead of going that route, I began our talk about her plans for the future by
empathizing with what she was feeling at that moment.
“You want to get a job when you leave?”
“I’m going to work on Wall Street,” she answered quickly.
“Why Wall Street?” I asked, ignoring for now how far-fetched her plan was.
“I want to make a lot of money. I need to have my own money.”
“It’s important to you to have your own money and you can do that by
working on Wall Street. Is that right?” I reflected back to her.
“Yes. I hate having to ask my family for money.”
“How come?”
“It makes me feel like a child. My little sister [who was in her thirties] is a
stockbroker and you should see her house. I’m the big sister; I should be making
money too!”
“It sounds like asking for money makes you feel embarrassed or even a little
humiliated. Am I right about that?” I asked, checking to see if I understood her
feelings and at the same time communicating my empathy.
“It does. Wouldn’t you be embarrassed?” she asked.
“Yes, I think I probably would feel that way.” Sensing an opening, I added,
“Can I ask you something?”
“What?”
Careful not to add to her humiliation and raise her defenses, I asked, “Why
do you think you haven’t worked very much?” (Note that I didn’t ask, “Why is it
you’ve only worked about twelve days in your entire adult life?”). She quickly
answered, “Because I’m always in the damn hospital!”
“Is being in the hospital keeping you from work?”
“I’m angry about being in the hospital so much. I want to get on with my life
and I can’t if I’m in a damn hospital.”
“So it’s much more than frustration you feel. It makes you angry. Yes?” I
asked, nodding my head.
“Very angry,” she answered more calmly.
Pushing ahead, I asked, “How do you feel about the fact that it’s been hard to
find work?”
“Sometimes I want to scream!”
“That sounds infuriating. Is it?”
“No. It is frustrating,” she answered, correcting my misperception.
“So it’s frustrating. Sorry I got that wrong.”
“That’s okay,” she reassured me.
 During this brief exchange, I empathized with Dolores’s feelings of
humiliation, her deep desire to work, and her frustration with being unable to
work. Did you notice that nearly everything I said was in the form of a question?
That is how you should do reflective listening. Also, by making a statement
about my understanding of her feelings and asking if I had it right, I was able to
make sure I understood what she meant when she said she wanted to scream. I
also communicated my empathy for what she was feeling and allowed her to be
in control of the conversation.
Also, by asking questions instead of commenting on what she had to say
(“What you’re planning isn’t realistic.”), I learned what was important to
Dolores, what was uppermost on her mind, and how she was feeling. By doing
that, I created a window of opportunity, which I later used to discuss what role, if
any, she felt treatment might play in what she wanted to accomplish (i.e., staying
out of the hospital and working on Wall Street).
Whenever you want to facilitate change in another person, you must first
become his friend (i.e., someone he trusts). Whenever you convey empathy for
another person’s experience, he feels understood, respected, and more trusting.
Because you understand the other person’s point of view and how he feels about
his situation, there is nothing to argue about. Consequently, he becomes less
defensive and more open to hearing your perspective. And, more often than not,
he will ask either: “So do you believe me?” Or, “Why are you acting like you
believe me? You don’t believe me, do you?” These questions are opposite sides
of the same coin. And it’s a coin you want to handle carefully as it is vital to
where you want to go.

How to handle the “Do you agree with me?” question

Delay answering questions about delusions, having a mental illness, or the
need for medication as long as you can. There are two reasons to do this. First,
so that you preserve and build on the good relationship you have been creating
with reflective listening and empathy. Up this point the person feels that his or
her opinion has been respected and honored. In fact, he feels so certain of your
respect for his opinion that he has made the mistake of thinking you probably
agree with him. Therefore, when you do give your opinion, it will probably hurt
and make the person defensive. The longer you wait, the more experiences he
will have of your listening to him without disagreeing or, essentially, telling him
he’s “crazy,” which is just how many persons with mental illness will hear your
opinion unless you pay close attention to how you give it.
 The second reason to delay has to do with the two ways one can give an
opinion that I told you about in the previous chapter. By making the person ask
you repeatedly for your opinion, you make him responsible for having to hear it.
Think about it. If you asked me over and over again whether I thought you were
mentally ill and needed medication, and I didn’t seem very eager to tell you,
you’d have no one to blame but yourself for having coerced me into giving it.
Try to remember:
Only give your opinion when it has been asked for
An opinion that has been asked for carries more weight than an unsolicited
opinion
It is important to avoid or delay giving your opinion

So how can you delay giving your opinion on these matters that are so
important to your loved one? I want you to write down something you could say
to delay giving your opinion on the question, “Do you think I am mentally ill
and need to take medicine?”
Read what you wrote and imagine it was being said to you. How would you
feel about it?
The trick to delaying is first to honor the question by promising to answer it.
By doing that, you empower the person by asking his permission to delay
answering and you make the point that his opinion is more important than yours.
It is not as complicated as it sounds. Here are some examples.
“I promise I will answer your question, but, if it’s okay with you, I want to
wait and listen to you some more first, okay?”
“I will tell you, but I would rather keep listening to your views on this
because I am learning a lot about you I didn’t know. Can I tell you later
what I think?”
“You know, your opinion is the most important opinion in this room, not
mine. So I would like to learn more before I tell you what I think, if that’s
alright with you.”

I once had a patient say to me, “But you’re the doctor! Your opinion has got
to be more important than mine.” I disagreed and I told him so. “When we’re
done talking and you walk out this door, you are in the driver’s seat. Your
opinion is what will determine what you do and where you go, the choices you
make. Not mine. So you’re opinion is far more important than mine.” By saying
this, I was empowering him while humbling myself. More important, it was
coming from my heart. I believed it. As you can imagine, this made me and my
opinion a lot less threatening to him than I or it would have been otherwise.

When you feel the time is right, you want to give your
opinion.
At some point, when you feel the time is right, you want to give your
opinion. Earlier in the book I told you about the research that indicates how a
special kind of relationship can influence someone’s willingness to take
medicine. That relationship is one in which the mentally ill person feels that his
opinion is respected, trusts the other person, and believes that this other person
thinks taking medicine is a very good idea. Well, now is your chance to give
your opinion. But, for the same reasons you delayed giving it, do it with humility
and while empowering your loved one. Never give your opinion without first
using what I call the three A’s. I described them earlier, but they are so important
—and so many readers tell me they missed them when reading this book—I list
them here again:

Apologize — “Before I tell you what I think about this, I want to apologize
because it might feel hurtful or disappointing.”

Acknowledge fallibility — “Also, I could be wrong. I don’t think I am, but I

might be.”

Agree to disagree — “And, I hope that we can just agree to disagree on this.
I respect your point of view and I will not try and talk you out of it. I hope you
can respect mine.”

This, too, comes quite easily once you practice it a few times. Try it out with
someone in a role-play before using it with your loved one. Practice it in other
situations. It will disarm the person you are about to disagree with when you say
something like, “I am sorry because my answer might upset you and I realize I
could be wrong. I just hope we can agree to disagree. I think
_________________.” Don’t use the word “but” as in, “But, I think…” People
who are in a disagreement typically stop listening when they hear the word
“but.”
If your loved one gets defensive after you give your opinion, don’t argue.
Just apologize for disagreeing. You might even say something like, “I wish I felt
differently so we didn’t have to argue about this.” But I have found that by the
time I give my opinion when using LEAP, I rarely encounter defensiveness.
 8
Agree
One of the questions I typically get asked when conducting LEAP workshops is,
“This sounds great but it must take a lot of time! Who has time to do this?” At
this point you may be feeling the same way. In fact, it takes no more time to use
LEAP than what you have probably been doing all along. Think of all the time
you’ve wasted arguing or attempting to coerce the person you’ve been trying to
help into accepting treatment. In my experience LEAP does not take more time,
and the research I cited earlier on MET confirms that impression. Hopefully, you
are now reassured on this count and eager to learn the next step.
Having listened carefully to your loved one’s attitudes and feelings about
treatment, and having conveyed your empathy, you have undoubtedly found
areas where the two of you agree. I never shared Matt’s beliefs that God had
chosen him as his special messenger to the president, that the CIA was trying to
assassinate him, or that he was not ill. But we did agree on at least one thing:
that it was very important to keep him out of the hospital. Dolores and I agreed
on something similar, and on her goal of getting a job. Although I didn’t think it
was likely that work was right around the corner for her, I did believe she could
start taking some steps in that direction. Vicky and Dr. Kohut agreed to examine
together whether she truly needed to take medication after she left the hospital.
My brother and I have agreed for a long time now that when he takes his
medication regularly he stays out of the hospital, the voices he hears diminish
and bother him less, he becomes less fearful, and he is less likely to be asked to
leave the coffee houses he likes to frequent.

When you share the same goals, you can work together
instead of being at odds.
Whenever you see a window of opportunity to convey your observations and
opinions, always begin with something your loved one already acknowledges
and believes. The more common ground you can find the better. When you share
the same goals, you can work together instead of being at odds with one another.
Let’s look at how to recognize and use a window of opportunity to find common
ground.

Recognizing and using windows of opportunity

Dolores believed the main reason she had not been able to find work was
because of her frequent hospitalizations. Although this was certainly part of the
reason (you can’t work and be in the hospital at the same time), it was the end
product of what I believed to be more relevant factors. She, however, had very
little insight into the more salient reasons she had trouble finding and holding
onto a job.
According to her family, Dolores had lost the few jobs she was able to get
because of the symptoms of her illness. For example, she would begin talking to
herself while at work, having quiet conversations with the voices she was
hearing. Sometimes she would become paranoid and accuse her bosses and co-
workers of plotting against her.
Dolores, however, didn’t recognize the symptoms of her illness, much less
the role they played in keeping her unemployed. Instead, she felt her numerous
stays in the hospital were causing the problem. Consequently, when we talked
about her desire to work, I avoided the issue of symptoms or the role they played
in her being fired (unless she specifically asked my opinion about this issue).
Instead, I focused on the part of the explanation that we did agree upon—
hospitalizations. We agreed that being in the hospital made it impossible for her
to work. This led to our agreeing on something else that helped me to formulate
a treatment agreement she could accept. But before I tell you more about
Dolores, I want to tell you about six things I try to do whenever I see a window
of opportunity. When defenses have been lowered and your loved one appears
receptive to hearing your views:

1. Normalize the experience (“I would feel the same were if I was in your
shoes.”).
2. Discuss only perceived problems/symptoms (Statements such as, “I can’t
sleep at night because I’m constantly on guard. I am so afraid that they’re going
to come and hurt me,” describe insomnia and paranoia stemming from a
delusion. However, the words insomnia and delusion never need to be used in
your discussions).
3. Review perceived advantages and disadvantages of treatment (whether
rational or irrational).
 4. Correct misconceptions (antipsychotic medications are not addictive;
serious mental illness is not caused by one’s upbringing or use of illicit drugs).
5. Reflect back and highlight the perceived benefits (“So if I have it right,
you’re saying that when you stay on the medication you sleep better and you
fight less with your family?”).
6. Agree to disagree (whenever areas of disagreement are brought to the
surface).

Dolores was angry and frustrated about being hospitalized so frequently and
about how this interfered with her goal of getting a job. I empathized with her
frustration and anger when I asked, “It sounds like you feel really frustrated
about being in the hospital again.”
“Very. I need to get out of the hospital and get back to work. I’m going to go
crazy if I stay here much longer.”
“You’re feeling stir crazy?”
“Yes!”
I followed with, “You know something? We’re exactly the same that way. I
would go absolutely stir-crazy if I were locked up in a hospital and didn’t have a
job. In fact, I think anyone would feel that way.”
With this small bit of self-revelation I was helping to normalize the
experience Dolores was having. I then asked her if there were any other reasons
she was not having luck holding down a job. Some of her ideas made sense,
others were illogical, if not frankly delusional, and scattered in between were
little kernels of insight into how her disorganized behavior may have contributed
to being fired repeatedly.
Noting these instances of insight, I then asked if she wanted my thoughts on
her problem (notice that we are now talking about a problem she perceives she
has). She did.
I began by reflecting back what she had said earlier, and then I made a
statement in the form of a question, “Well, certainly being in the hospital is
interfering with your being able to work. I guess that raises the question of what
you can do to stay out of the hospital.”
“I don’t know. Move away from my family?” she answered wryly.
“Is there any pattern that you’ve noticed?”
“Well, my father is usually the first one to start picking fights with me. He
tells me I’m sick and need to go to the hospital. He’s always on my back about
taking my medications.”
“Why is that?”
“He thinks I’m psycho.”
 “That bothers you?”
“Yeah, it bothers me.”
“I can see why that bothers you. ‘Psycho’ is a pretty derogatory label to use.
Does he actually say that? Does he say you’re ‘psycho,’ or is that how it feels to
you?”
“No, he doesn’t say it. He thinks I have a chemical imbalance in my brain.”
Here I am normalizing her experience by acknowledging that being called a
psycho would be bothersome, to say the least, to most anyone. It is a derogatory
term. I am also asking for clarification.
“So, if you were taking your medications, do you think he wouldn’t be on
your back?”
“I know he wouldn’t.”
“I see. And when the two of you fight about the medication, it often ends up
with you going to the hospital?”
“I have to, just to get some peace.”
“So would it be fair to say that there are two advantages to taking your
medications? The first being that your father would not be ‘on your back’ and
the second that you would be less likely to go to the hospital?”
“Yes.”
“Yes what?” I asked her to clarify in order to be certain of exactly what it
was she was agreeing to.
“If I took my pills my father would leave me alone and I wouldn’t have to
come here.”
“What are some of the disadvantages to taking medications?” I followed
quickly.
“I am not a psycho, for one. Also, I hate how much weight I gain whenever
I’m on them.”
“What else? Are there other side effects or other things about the drugs that
you see as disadvantages?”
“They make me hear voices. And besides, I don’t want to get addicted.”
“You are worried about getting addicted?”
“Yes. These are powerful mind-altering drugs.”
“They’re powerful and they do affect the way you think and feel. Would you
like to hear about my experience with the drugs you’re taking?”
“You’ve taken these!?” she asked incredulously.
“Well, not the drugs you’re taking now. But over the years I have seen more
people than I can count who have taken these medications. My professional
experience leads me to the conclusion that the drugs you are taking are not
addictive and they don’t cause voices like the ones you hear.”
 “How do you know?”
“From talking to people who have taken these drugs and from reading the
research.”
“I always thought they were addictive.”
“Well, they’re not. At least I’ve never seen it. Do you still want to put on the
list that ‘they cause you to hear voices’ and they’re ‘addictive?’”
“No, I guess not.”
“Your call,” I said, pausing to see if she was going to change her mind. Then
I continued. “Any other disadvantages to taking medication?”
“It’s embarrassing. I don’t want people to know.”
“Can we write this down so I can keep track?” I asked, wanting to record
while we were together, rather than afterward, the advantages and disadvantages
Dolores and I were identifying.
“Sure.”
Taking out a pad and pen, I asked, “What were the disadvantages again?”
“They make me feel like I’m psycho, they’re embarrassing, and I gain
weight.”
“And the advantages were what?”
“My father isn’t on my back and I stay out of the hospital.”
I read the list back to her to make sure I had it right and asked her to keep
thinking about the advantages and disadvantages of taking medication.
“Why should I keep thinking about it? You’re like everyone else. You want
me to take these drugs just like my father,” she reacted defensively.
“No, that’s not my reason for asking you to keep thinking about it. You have
never really asked me my opinion about what I think you should do about taking
medications after leaving the hospital. While you are here, I have been clear that
I think you should take them. But you haven’t asked me what I think you should
do afterward. Besides, we weren’t really talking about medications. We were
talking about your getting a job and how being in the hospital keeps you from
your goal.”
Dolores visibly relaxed as I spoke and said, “So you don’t think I should take
the medications after I leave?”
“No, I didn’t say that. I said you’ve never really asked me my opinion.”
“So what’s your opinion?” I welcomed her question because I felt the time
was right to tell her what I thought. She wasn’t defensive so I didn’t try to delay
giving my opinion this time. I said “Well, if we are talking about your goal of
getting a job, then I see the same two advantages you see. Your father will be
less bothersome and you’ll stay out of the hospital. So those are two good
reasons to take them. I also see three reasons not to take them. You gain weight,
they make you feel like you’re a psycho, as you put it, and you feel embarrassed
about taking the pills.”
“So what’s your opinion?”
“I’ll tell you if you want, but it might feel disappointing.”
“You think I’m psycho!” she said. We both laughed. Before answering, I
used the “Three A’s”: “Look, I’m sorry I feel this way. I don’t know everything
and I could be wrong. I hope we can agree to disagree about this and be okay. I
think you ought to give the medicines a try. You can always change your mind
later.”
“Why should I?”
“I think, at least in my mind, that the advantages you listed outweigh the
disadvantages. Do you agree?”
“I’m not sure,” she answered slowly.
“So don’t you think it’s worth keeping track of? You know, what is good
versus what is bad about taking the medications. Because it sounds like when
you don’t take them it creates a lot of conflict at home and you end up in the
hospital.”
“I guess so.”
“Did I answer your question about what my opinion is about the
medication?”
“Yes. You think I should take them if I want my father off my back and I
want to stay out of the hospital.”
“That’s basically right, except you said it would help with your father and
ultimately keep you out of the hospital, not me. I said it was important to try and
keep track of the pluses and minuses. I also said that I know there are things
about taking the medication you don’t like.” I added this comment to emphasize
the fact that I hadn’t lost sight of the negatives.
Did you notice how I never once said she should take medication because
she has a mental illness?
During another conversation, I had an opportunity to add another benefit to
the list we had started. I should mention that I never met with Dolores again
without bringing the list we had begun. It was a single piece of paper and at the
top I had put a minus sign on the left and a plus sign on the right, with a line
down the middle. Advantages were listed under the plus sign and disadvantages
under the minus. Prior to the conversation I’m about to recreate, I did a little
homework. Luckily, Dolores was on a research unit where we made a point of
tracking down and obtaining copies of old medical records. This is something
that almost never happens when someone who is seriously mentally ill is
hospitalized, although family members and therapists sometimes keep copies,
which they then duplicate and give to hospital staff. In any case, I took
advantage of the fact that her records were available to look for periods of time
when she was hospitalized. Then I compared these instances to times when she
was employed. I was not surprised to find that the instances when she was able
to work corresponded to the periods when she was regularly taking her
medication. So, when we met again I asked Dolores if she wanted to hear what I
thought might be another benefit of taking medication. “I think there may be
another benefit to taking medication that’s not on our list. Want to hear what it
is?”
“Okay.”
“I was looking over your medical records and discovered an interesting
pattern. You were not taking medication almost every time you lost a job. Have
you noticed that pattern?”
“No,” she answered quickly.
“You answered that kind of fast. Can I suggest something?”
“What?”
“Just think about it some more. Not now. Later. See if you can remember
whether you were taking medications when you had a job and whether you and
your father were arguing a lot during those times. Can you do that?”
“I can do that. I’ll think about it.”
“In the meantime, can I add it to our list with a question mark? A possible
benefit?”
“Sure. But I don’t think it’s true.”
“Then let’s agree to disagree.”
“I agree that you’re wrong!” she answered with a big grin on her face.
“But you’ll keep an open mind about the possibility that I am right, and I’ll
do the same. I’ll stay open to the possibility that you are right. Agreed?”
“Agreed,” she answered, serious again.
I don’t normally push to put something on the plus side of the list if the
person isn’t convinced. Usually, I am quick to say we shouldn’t list it unless the
person is absolutely certain it’s a positive. But Dolores liked and trusted me and
had a good sense of humor, so I felt more comfortable pushing the issue.
During our subsequent conversations, I tried very hard to follow the six
guidelines given above. Whenever possible, I tried to normalize her experience,
usually by letting her know that if I were in her shoes I would probably feel the
same way (about being hospitalized, feeling like my loved ones thought I was a
psycho, taking medication). I was very careful to discuss only those problems
(and symptoms) Dolores mentioned herself. And I took every opportunity I could
find to review the advantages and disadvantages of treatment. Here as well, I
was careful to discuss only the pluses and minuses Dolores had raised herself.

Remember always to ask questions when you want to

make a point
The one time I suggested an advantage she had not identified herself, I first
asked if she wanted to hear my opinion (“I think there may be another benefit to
taking medication that’s not on our list. Want to hear what it is?”). Remember
always to ask questions when you want to make a point. By couching your
opinion in the form of a question, you emphasize that you want to collaborate
and not pontificate. It also gives the person you are trying to convince a sense of
control over the conversation. In the end, asking questions usually lowers
defenses.
When we spoke, I was constantly on the alert for any misconceptions
Dolores held about medication. I corrected her mistaken belief that the
medications she was taking caused hallucinations and were addictive. Then I
asked if she still wanted to put these complaints on the list. If she had said yes, I
would have complied, but I would also have asked if we could revisit the issue
later.
I reflected back (repeated) and highlighted the benefits she mentioned
whenever the opportunity presented itself. And we agreed to disagree about
whether or not Dolores had stopped taking medications prior to losing her jobs.
I encourage you to go back and reread our discussions to see if you can
identify when I used each guideline.

From a position of empathy, you can help your loved one to feel more
normal and amplify those beliefs that are relevant to arriving at a treatment
agreement.
Make and keep a list of the advantages and disadvantages to staying in
treatment (drugs, psychotherapy, day programs, occupational therapy, etc.). Be
careful always to list any negatives that are mentioned. Doing that both increases
your credibility and flags potential obstacles to arriving at a treatment
agreement. For example, we have many more medication choices today than we
had when my brother first became ill, and the newer medications cause fewer
side effects.
Correct misconceptions about treatment whenever you can and highlight any
benefits your loved one already experiences. Finally, whenever you come up
against an area of disagreement, try and agree to disagree. When you do that you
are conveying respect for the other person’s opinion, and he will likely be more
open to the possibility of being proved wrong.That openness is key to your loved
one’s reconsidering his position about staying in treatment. Don’t be afraid to
say that you might also be wrong. If you’re not open to being proved wrong,
why would you expect your loved one to be?
 9
Partner
“How did the psychologist find his wife who was lost in the woods? He
followed the psycho-path.”
Henry Amador, October 1997

Henry and I agreed that being hospitalized was something to be avoided. We

also agreed on his goal of getting a job and obtaining more “pocket money” so
he could buy soft drinks, cigarettes, or a hamburger if he felt like it. Although I
felt he was much farther away from holding down a job then he did, this
difference of opinion was rarely mentioned. Sometimes he would try to corner
me by saying, “You don’t think I can work right now, do you?” Usually, I was
successful in delaying my opinion by saying things like, “I’ll tell you what I
think if you insist, but what I think doesn’t matter. Your opinion is far more
important to me, and you think you can. Right?” Usually that was enough to
move him from his original question to one that would be more fruitful, such as
what it would it take for him to reach his goal.
It took some time, but eventually we agreed that when he took his
medication he stayed out of the hospital. At first he attributed the relationship
between taking his pills and not being hospitalized to a reduction in the pressure
he was getting to stay on the medication rather than any benefit derived from the
drugs themselves. In other words, he knew that if he stayed on the medication
his doctor and family would not force the issue of hospitalization. In time,
however, he came to see his medication as helpful in other ways as well.
Today, if you were to ask him why he takes the medication he would tell you,
“It helps me with the voices and it makes me less paranoid.” Over the past few
years I have noticed that he tells people he has “schizoaffective disorder.” I’m
not entirely sure if he believes that, but he is light years farther down the path
than he was when he first became ill.
His awareness of how medication helps him with his problems grew out of
the partnerships he developed with various therapists and with me. We often
spoke about his fervent desire to get a job. Whenever we did, I empathized with
his frustration and encouraged him to try to figure out why he could not keep the
jobs he found.
My guess is that he worked in more than a dozen twenty-four hour
convenience stores and other odd jobs during the first 10 years of his illness (and
hasn’t been able to work since).Most stints were for a week at most, ending with
his being fired or simply not showing up for work anymore.
He had various explanations to which I listened attentively without
challenging their irrationality. Whenever I asked him if I could tell him what I
thought, and he said yes, I kept raising the same hypothesis: “Whatever else
might be happening,” I would tell him, “it’s hard to work when you’re feeling
anxious and hearing voices.” Henry knew the medications “blocked the voices”
and helped him “feel less paranoid.” But he had yet to make the link to how the
voices and paranoia interfered with his ability to hold down a job because he was
too worried that if he admitted the medications helped him he would be
admitting that he was mentally ill. I reassured him, by the way I spoke to him,
that this wasn’t the case.

Try to agree on goals that are obviously reachable, but

don’t limit yourself to those.
I can’t say for certain how much his gaining the insight that finally allowed
him to make the connection had to do with his developing the high level of
adherence to treatment he currently has. But I am sure it helped the cause, at
least a little. I know this because he no longer argues with me as he had in the
past— probably because I don’t want to argue about such things anymore and
also because I couched my opinion as a “hypothesis.” I didn’t tell him what the
problem was. Instead, I gave him my best guess. Instead of being defensive, he
listened to my hypothesis and took it in. He was at least considering the
possibility that I was correct.
Despite the fact that he has taken his medication more consistently for many
years now, he still hasn’t reached his goal of holding down a job. This highlights
an important point. Try to agree on goals that are reachable, but don’t limit
yourself to those if you don’t have to. Although I thought it would be hard for
Henry to work again because he still has some residual symptoms even while on
medication, my willingness to talk about his goal gave him hope and a degree of
pride. Before that, I used to say, “You’re putting the cart before the horse; you
have to take medicine and get well before you think about getting a job,” which
was dismissive and made him feel frustrated with me.
 Fortunately, when it came to his goal of obtaining some spending money, I
was able to provide him with an opportunity for easy success. Each business day
I sent him a check for five dollars, care of his therapist at the day program in
which he was enrolled. When I began doing that, I worked out a contract with
Henry and his caseworker regarding the things he needed to do in order for the
money to be released to him. The main tasks were to attend the program and take
his medication. The other requirement was that he not be belligerent and hostile
when money was withheld for the days that he missed (for the first several
months he missed a day or two every week).
At first Henry felt angry and that I was treating him “like an infant.” He felt
insulted by my proposal, and I realized that our partnership was in jeopardy of
reverting to estrangement. So I stopped and talked with him about his feelings
and empathized with his anger and frustration.
I also apologized for having an opinion that differed from his. He felt that if I
loved him I should give him the money regardless of whether he went to the day
program or not. I could afford it while he had so little money. He was right, I
could easily afford this, and he did have very little. Furthermore, he wanted me
to send the full amount weekly directly to him, rather than doling it out five
dollars at a time and sending it to his therapist. I told him I was sorry but in my
view, “and I could be wrong,” his attendance at the program was so vital to his
getting a job and “doing better” that I wanted to give him an extra incentive to
do it. I also said that I worried about what he would do with the money if I sent
larger amounts directly to him. Like so many people with serious mental illness,
Henry would medicate his illness with alcohol from time to time. After we each
heard what the other had to say, Henry felt bribed and I struggled with feeling
guilty.
But I stuck to my guns by first apologizing for my position, because I knew
it hurt and frustrated him, and explaining, “I really want to help you out. I want
to give you this money. But if you are not going to the program, or at least
checking in with them everyday, I worry that things are going to go downhill and
you’ll end up in the hospital again.” I added that I thought I might actually make
things worse for him if I sent him the money directly. I didn’t want to raise the
drinking issue just then, so I talked about other concerns I had that were closer to
the concerns he had.
My brother can be very impulsive with money. He often gives it away to
anyone who asks him. This used to happen quite regularly because the people he
lived with were, like Henry, on disability insurance and had very little, if any
pocket money. He hated saying no but also hated losing the money. So I said, “If
we do it my way, when your friends ask you for money, you can honestly say
you only have five dollars and you need it.” He agreed that this was an
advantage to my scheme, although he still wasn’t thrilled and didn’t think I
should have the other concerns I had. He did, however, understand that, right or
wrong, these were things that worried me greatly. We ultimately agreed to
disagree, but in the process we found something we could agree on. Henry
suggested a compromise. Rather than go to the program for the entire day, he
would go in the morning to pick up his check, spend a few minutes talking with
his caseworker, and take his morning medications in front of her (as you will
learn in the next Chapter, I eventually convinced Henry to accept long-acting
injectable medication, so this part of our arrangement became much easier). His
suggestion immediately made sense to me because I knew my brother found the
program tiresome and boring. He felt everyone there was worse off than him. No
doubt many of his peers felt the same way. I can’t say that I blamed him. I, too,
would have found the program he was in at the time excruciatingly boring. I
understood his perspective, and he knew it. In the end we agreed that he would
go every day to pick up the check and spend a few minutes talking with his
caseworker about the previous day. To my surprise, I learned that once he got
there he often stayed for several hours.
Our treatment agreement consisted of two main elements: Henry agreed to
take his medication (to help him to stay out of the hospital) and go to his day
program everyday (so he could have spending money). In the past ten years, he
has been hospitalized about six times, always voluntarily, and always for very
short stays (usually a few days). I doubt anyone can provide an accurate
accounting of the number of hospitalizations he had prior to this period of time. I
know for certain he averaged about four hospitalizations per year, each lasting a
couple of weeks or longer.
Many other unexpected benefits grew out of our forming a partnership and
treatment agreement. Our respect for one another grew, as did our comfort with
spending time together. I truly enjoy spending time with him now. He makes me
laugh and feel much loved. I think I do the same for him. The picture on the
back cover of this book was taken during a visit he made to my house in 1999.
He stayed for a week and we had a great time. That picture captures, far better
than any words could, how much easier our time together has been these past ten
years. He’s the one on the right.

Matt
After the hospitalization I told you about in Chapter 4, Matt’s parents
decided to meet with me so that I could help them to develop the communication
skills and techniques I’ve been describing. As a result, they were able to form a
partnership and treatment agreement with Matt similar to the ones I made with
Henry. Matt and his parents agreed that it was very important to try to keep him
out of the hospital and to reduce the high level of conflict they had at home.

They abandoned the approach of confronting their son

with his illness in favor of a more practical and
productive approach.
The Blackburns were quick to see the benefits of the approach I taught them.
They were tired of fighting with their son and sorely needed a break from all the
hostility that had built up between them over the years. They abandoned the
approach of confronting Matt with his illness in favor of a more practical and
productive approach. They listened and learned that Matt wanted to stay out of
the hospital as much as they wanted him to, and he also wished desperately for
peace at home. The peace emerged naturally as the Blackburns backed off from
trying to convince their son he was ill. It took about two months, but Matt slowly
began to listen and to understand how his parents felt about the medication he
refused to take.
He felt bad that his mother became very frightened when he was not taking
medication. If you recall what Matt was like at home and how he felt about
taking medication, this may sound a little far fetched. But Matt’s guilt emerged
from many discussions with his parents, mostly with his mother, during which
they never once told him what he should do. They asked questions, and when he
asked them what they thought, they gave their opinion while also acknowledging
that they could be wrong. They didn’t think it was likely they were wrong about
why he needed to take medication, but they could consider the possibility.
When his mother told him he frightened her when he stopped taking
medication, Matt felt bad. For this reason, and because his parents said there was
a good possibility they might not be able to live with him any longer if he did
not take the medicine, Matt agreed that the advantages to taking it far
outweighed the disadvantages. This did not happen overnight, but the result was
that Matt and his parents accomplished both of the goals they had set out to
achieve. I received a card from the Blackburns over the holidays last year. Under
Mrs. Blackburn’s graceful penmanship conveying the family’s good wishes for
the New Year her husband had scrawled a little note: “Thanks again for your
help. Matt has not been in the hospital in over a year!”

Dolores
Dolores and I agreed on something similar to what the Blackburns had
agreed upon, and on her goal of getting a job. Although I didn’t think she was
going to find a job on Wall Street any time soon I did believe she could start
taking some steps in that direction. As I did with my brother, I looked for
opportunities to share my hypothesis that she might need to be on medication in
order to keep a job. Unlike my brother, but like most people with these illnesses,
Dolores was nearly symptom-free when she took her medication. So working
full time again in a demanding job was not totally out of the question if she
stayed on the medication consistently. As you may recall, I once asked her to
keep an open mind about the possibility that medications might make it easier
for her to work. At that time she didn’t think I was correct, and we agreed to
disagree. But she did accept my suggestion that she become a scientist and keep
an open mind. During her next hospitalization, just five months after the last, we
had an opportunity to discuss my theory again. I began by asking her if she had
kept the list of advantages and disadvantages to taking medication that we had
started when she was in the hospital the last time. She didn’t know where it was,
but since I had put a copy in her medical record, we were able to go over it
again. Her current assessment of the pros and cons to taking medication was
consistent with her previous one. When we got to my note about work that was
under the advantages column with a question mark, I asked her, “When you were
here last you were planning to get a job. Did you have any luck?”
“Yes. I got a job in our local library.”
“That’s good news. Congratulations. How has it been going?”
“He fired me.”
“Who fired you?” I asked.
“The head librarian. He said I talked too much.”
“Can I ask you about whether you were taking your medication at the time?”
“No. I stopped. I didn’t need it anymore.” Showing her the list I had kept, I
asked if she remembered why I had put a question mark next to the word “work”
in the advantages column.
“We disagreed about that. I was supposed to think about it.”
“What do you think?” I couldn’t help asking.
“It’s true I wasn’t taking the medication, but I don’t know if that had
anything to do with it.”
 “Okay, shall we make a note of it anyway?” I asked.
“I don’t care, sure, go ahead.”
“Can you keep an open mind to the possibility that medication helps you to
work?”
“Yes,” she answered definitively.
Dolores was hospitalized again about three months later, and although she
had not found a job in the interim, we talked about the issue again. She was now
more open to the idea and admitted that when she stopped taking the medication
she talked to herself more. Her family said that one of the problems she had at
work was talking to the voices she heard whenever she was off medication. This
led to a discussion of how other people might view her talking aloud to herself.
She said, “They would think I was nuts!” Having made this link, I tried for
another and asked her whether she was hearing voices and talking to herself the
last time she was fired. Again, she answered yes.
It took three hospitalizations and encouragement from her family and
outpatient psychiatrist, but Dolores finally agreed that taking medication would
very likely help her to work. Now everyone was on board with the idea, and her
psychiatrist and parents focused on reminding her of this advantage (which she
now believed in) rather than trying to get her to understand that she had an
illness. The headline here is that Dolores agreed to take her medication even
though she still did not think she was ill.
While preparing the revision of this book, I wrote to Dolores to ask how she
was doing. She is in her last year of college and has been working in the
university library for the past two years. She told me she takes her medicine
regularly, that “it doesn’t bother” her, and that she is “so used to taking it [she]
can’t imagine not!”

Vicky
Vicky lowered her medication dosage six months after her hospitalization.
As you may recall, she believed that once she was out of the hospital she would
no longer need the medicine. She agreed with Dr. Kohut that she would stay on
it for at least six months, at which time, if she still wanted to try to go off it, she
would do so under her doctor’s supervision.
She was seeing Dr. Kohut weekly as they had agreed, and her husband was
aware of what she was doing. Dr. Kohut asked Vicky and her husband to keep a
daily diary to record their descriptions of her mood, speech, and thinking. They
were asked to note if any of the symptoms into which Vicky had insight
(grandiosity, euphoria, insomnia, and pressured speech), were returning. After
two weeks on a lowered dose of lithium, Vicky reported that she was sleeping
less and not feeling tired. She also said that Scott felt she was getting “hyper”
and talking more than usual. When I asked her if she agreed with Scott’s
observation, she reluctantly said yes.
The experiment lasted another two weeks, during which time Vicky became
more hyper and started to have grandiose thoughts. Scott asked if he could
accompany her to her next session, and she agreed. Vicky admitted to her
husband and doctor that she was getting “tired out” again. She was anxious
about losing control and asked to have her medication raised again.
No one said anything close to “I told you so,” and the question of whether
she needed medication for the rest of her life was still on the table. Vicky felt
understood and respected by Dr. Kohut and her husband, and she knew that if
she wanted to try to go off the drugs again, they would both help her.
I haven’t seen her in more than ten years, but I still see Dr. Kohut from time
to time. As of this writing, he tells me that Vicky tried one more time to go off
her medication but quickly reversed course once the symptoms re-emerged.
Since then, her partnership with her husband and doctor has kept her in
treatment. Her treatment agreement (that if she wants to go off medication she
will do it with the help of her doctor and husband) stands to this day.
 Part III
Staying on Guard
and Next Steps
“Hope is a good thing - maybe the best thing, and no good thing ever dies.”
Stephen King
“Love many things, for therein lies the true strength, and whosoever loves
much performs much, and can accomplish much, and what is done in love is
done well.”
Vincent van Gogh
 10
Don’t Let Your Guard Down:
The problem of poor adherence
I have, as I’ve said, used LEAP to convince patients to accept medication on a
trial basis even though they continued to believe they were not ill. But I have
also learned the hard way always to remember that this person still believes
there’s nothing wrong with him, and that his belief often leads to his
“accidentally,” or unconsciously, missing doses. If you also consider the fact that
people who are not mentally ill but need to take medication for any number of
serious medical problems also have trouble remembering to take their medicine,
8 you will see how many doses are likely to be missed.

The problems that arise from such “partial-compliance” can be more subtle,
but no less significant, than what happens when someone stops taking his
medication completely. For one thing, if everyone (doctor and family) believes
the patient is taking his medication regularly and it doesn’t appear to be working,
they’ll assume it’s been given a fair trial when that is far from the truth. I’ve seen
many medications written off as ineffective for a particular individual because
no one knew the person was missing many, but not all doses. But even if the
medicine appears to have some—but not enough—benefit, the doctor may be
afraid to raise a high dose even higher when, in fact, the patient is not taking the
entire dose that was prescribed in the first place!
How do I know all this? First, from my experience conducting thousands of
interviews using LEAP. I have heard many “confessions” of skipped doses.
When someone trusts that you will not scold, criticize, or even comment on such
admissions, they feel freer to share them. Add to that the empathy and
normalization that follows when you use LEAP (e.g., “I would have skipped the
dose too if it were me.”), and you are more likely to hear the truth in the future.
But research also shows that poor compliance rates (complete and partial
nonadherence) averaging between 50 and 75%. Psychiatrists have been found to
dramatically overestimate the rate of compliance in their patients. I think they
should be forgiven because if their patients were anything like my brother Henry,
they are telling their doctors what they want to hear.
 The stark fact remains that only 25% of our patients are taking their
medication as prescribed. So what can be done to engage such patients in
treatment and give them the tools to remember to take their medication—all of it
—as prescribed?
 11
First Line Treatments
The message light on my answering machine was blinking. I hit the play button
and heard, “Xavier, I am calling because Henry missed his appointment for his
Prolixin injection today. Please ask him to give me a call to reschedule.” 9 It was
my brother’s case manager, Patricia. Henry and I had met with her after his last
hospitalization and agreed that she would be allowed to call me if he missed one
of his appointments. It was 1989 and in the past twelve months Henry had not
been admitted to the hospital even once, whereas in the past he had been in and
out of psychiatric hospitals about four times a year. I believe now, as I did then,
that he had done so much better for several reasons—the therapist he was
working with, the change in the way I was talking to him (see Chapter 6, Listen),
and especially, the way in which he was now getting his medicine.
During his last hospitalization I had lobbied hard to convince Henry to try a
long-acting injectable (LAI) medication, rather than taking pills orally, because
over the years as a clinician working in hospitals I had seen how much it helped
so many others who had also been labeled “revolving-door” patients (or
“frequent flyers”). At that time, long acting-injectable, or depo, medicines were
typically prescribed to individuals being treated involuntarily in the hospital. The
rationale was simple: This person has a history of not believing he is ill and he
stops taking his medicine when he leaves the hospital. Consequently, we’ll give
him something that will last for two weeks at a time. And if he stops taking the
medicine (i.e., misses an appointment for the injection), we will know and will
be able to reach out to him.

Long-acting injectable medications should be among

the first line treatments.
For too long LAI medications have been considered a treatment of last
resort. They are offered only after all other avenues have failed. Both the
research and my experience tell me that the opposite is true. For patients like my
brother, who have long standing problems with insight—and for many others
who have difficulty with partial adherence—LAI medications should be among
the first line treatments. In other words, they should be among the first
medications offered to someone when first diagnosed with a psychotic disorder.
I have seen this strategy work time and again. It’s common sense when you
think about it. Before Henry agreed to the injections, he would typically promise
that if he were released from the hospital he would continue to take his
medicine. In fact, he did just what any of us would have done if we believed
we’d been wrongfully forced into a hospital and treated for an illness we didn’t
believe we had. We would tell the doctors and our worried family members what
they wanted to hear: “I see now that I am sick and need to take the medicine.”
It’s common sense.
Nevertheless, having to be dishonest with loved ones who are pushing you to
take medicine and allying themselves with the psychiatrists who are convinced
you are “crazy” is a terrible and lonely predicament to be in.
Before I learned how to listen to my brother, I was angry and felt betrayed
whenever he reneged on his promise. But after learning what it was like for him
to have to hide pills and lie, after hearing how humiliated and bad he felt about
being dishonest, I wanted to find a way to avoid putting him in that predicament
again. A simple solution was to lay everything out on the table and not create a
situation in which he would be tempted to secretly stop taking the medicine.
That is one of several reasons long-acting injectable medication was so helpful
to him. All he had to do was show up for an appointment every two weeks and
meet with someone he liked. The brief prick of the needle twice a month 10 was
far less difficult for him than having to struggle three times a day with the
conflict between loyalty to his family and his desire to stop taking the medicine.
He wanted to please our mother and me because he knew how worried we were
about him, but because his illness had convinced him nothing was wrong, he
found himself caught between a rock and a hard place more than 90 times a
month! Now it was just twice a month, and we all knew whenever the conflict
got the best of him and the “denial” won out.
Another, similar case with which I am personally familiar involved Millie,
who is the mother of Tina and Susan and the subject of Susan’s documentary
film “Out of the Shadow” (see Resources section at the back of this book). I was
the consultant for the film and am also a family friend. Like my brother, Millie
has a long history of schizophrenia and of hiding the fact that she is not taking
her medicine. Once, while flying on an airplane on her way to visit Susan, Millie
went into the bathroom, poured out the contents of every one of her capsules of
antipsychotic medication, then put the empty capsules back together and into the
bottle. She did this because she knew her daughter would be checking to see if
she was swallowing the pills. I can’t blame Millie for what she did. She didn’t
think she was ill. I wouldn’t want to take medicine for an illness I didn’t believe
I had! Would you? I would probably do the same thing if I were in her shoes.
As the film shows, when Millie is taking her medication, she does
wonderfully, but she relapses whenever she is able to avoid taking the medicine.
It was during her last relapse, when Susan and Tina were talking together with
me about Millie’s treatment options, that I strongly encouraged them to get her
on Risperdal CONSTA. She had previously done well on atypical medications,
and I felt that a long-acting injectable would give Millie the best chance of
staying well and recovering more fully. At that time, and as of this writing,
CONSTA was the only atypical antipsychotic available in a long-acting
injectable form. Susan and Tina were able to use their positive relationship with
their mother to convince her to accept twice-monthly injections, and, not
surprisingly, to my knowledge since she has been on this form of medication
there has not been another relapse. Among other positive benefits, Millie is no
longer tempted to secretly stop taking her pills. Like my brother, Millie is now
on a steady dose of medication and unable to act on her natural ambivalence
without her doctor and family knowing about it.

Medication: Which one and how it’s given

Very often when I’m giving a LEAP seminar someone wants to know, “What
medication is best?” The answer is “none.” My experience and the science agree
that we cannot reliably predict which medication will be best for any particular
individual. When deciding on a specific medication one needs to balance, among
other things, how well it is working against the side effects for that individual. In
some instances cost is also a deciding factor.
That said, however, I do believe that certain generalizations can be made
when it comes to choosing medications for people with a history of poor insight
and poor adherence to medication. In short, keep the dosing simple and make it
hard for the person to succumb to his desire to stop taking the medicine.

My advice is to keep it simple if you can.

When a medication is taken once or twice a day as compared to several times
a day or more, it is far easier to monitor the patient’s adherence. And it is also
easier for the person taking the medicine to remember and not succumb to an
unconscious desire to skip a dose. The fewer doses per day, the fewer
opportunities the person will have to consciously or unconsciously decide to skip
a dose or simply to forget.
When patients of mine have a history of poor insight and poor adherence to
medication, I often recommend a long-acting injectable drug.
When patients of mine have a history of poor insight and poor adherence
(i.e., partial or complete non-compliance) to medication, I often recommend a
long-acting injectable drug. Not only does this make it easier for the patient and
easier for me to monitor his compliance, but it does away with other issues as
well. For example, the person administering the dose doesn’t have to ask the
patient to open his mouth to prove he swallowed the pills (I would be thrilled if I
never had to do that again) or secretly count how many pills are left in the bottle
to try and get a read on whether or not he is taking all his medicine
But once again, you don’t not have to take my word for it (nor would I want
you to). There is research that supports what I’ve learned from personal
experience. For example, in 1999 Young and his colleagues published a
comprehensive review of research studies (see literature cited at the back of this
book) that found that, on average, about 50% of the patients who were taking
pills stopped taking their medication as compared to only 17%, of those who
were receiving long-acting injections. This essential finding has been replicated
numerous times.If you decide to go this route, don’t be scared off by the
prospect of trying to convince someone to take a shot twice a month. It’s not as
difficult as you might think. In fact, I have been involved in some research on
this issue 11 and found that if you use the main elements of LEAP you are likely
to be successful. But whether or not you can convince the person you are trying
to help to take a long-acting injectable medication, remember to simplify the
dosing, closely monitor that the medicine is actually being taken, and never stop
listening to how your patient or loved one experiences taking medicine.
As a final comment on the subject of medication, I’d like to speak to a
question I’m frequently asked: “If anosognosia is a symptom of mental illness,
like flat affect or hallucinations, can medicines help?” As I’ve already said, few
studies have examined this question specifically. Generally, anosognosia, like
other negative symptoms, appears to be resistant to drug treatment. Although
there are two studies in the literature that suggest that Clozaril and Risperdal
Consta may improve insight, 12 it’s important to remember what I’ve noted about
the importance of replication (i.e., Aristotle’s observation that “one swallow
does not make a summer”). Although promising, these studies must be
independently replicated before we can know if the findings are valid.
 Psychotherapy
Does psychotherapy do anything for people with serious mental illness? If
you’ve read this far, you now know why I believe it does. Many people have
asked me for referrals to therapists who use LEAP. Others have asked me for
advice about how to convince a therapist who is not trained in LEAP to try this
method.
Since the first edition of this book was published in the summer of 2000,
thousands of therapists and family members have been trained in LEAP. LEAP is
as much a communication style as it is a form of therapy, and because it is
intuitive and helps very quickly, most therapists are willing to learn it once they
get a feel for it.

Many therapists already use some elements of LEAP,

but not as systematically as they should and without
understanding its full potential.
It has been my experience that many therapists already use some elements of
LEAP, but not as systematically as they should and without understanding its full
potential. When I point out the specific instances when they have used reflective
listening, which is the cornerstone of this method of communicating with
patients, they quickly acknowledge that it reduces tension and distrust and opens
lines of honest communication about symptoms and treatment. At its best, it
helps patients find reasons to be in treatment that make sense to them and
transforms the LEAP practitioner from a potential adversary into someone
patients trust and whose opinion they value. For these reasons, I find that once
they get a taste of it, most therapists are not only open but also eager to learn
more about this way of working.
Many therapists have been trained in LEAP through LEAP Institute (see
www. LEAPInstitute.org). This year is the first year we have begun to compile a
list of certified therapist, however, thousands of others have attended LEAP
trainings over the past decade that we have not kept track of. So if you cannot
find a certified LEAP trained therapist in your community, there are some
questions you can ask to find out if the therapist you are dealing with, or
considering, has attended one of our earlier seminars and is using the core LEAP
tools. For example, you can ask if he or she has ever attended a LEAP seminar or
training day or read this book. You can ask if he or she has received any training
in Motivational Interviewing. If the answer is “no,” you can then ask if he or she
would be willing to read this book (loan them your copy).

How to Convince a Therapist to Read This Book

While it’s somewhat embarrassing for me to offer this next bit of advice and
I run the risk of offending my fellow-therapists, I do it because I’ve been told
countless times by readers who are family members that, “We gave a copy of
your book to our loved one’s therapist, but we don’t think he’s read it! How do
we get him to read it?” I have contemplated this question, wondering what I
would do if I were that therapist. And then I remembered that on occasion I
have, indeed, been given books by patients and family members. One of the
things that usually got me to crack the book’s spine was a request for my
opinion. Questions like, “I thought this book was helpful and I’d like to work
this way, what do you think? Should I?” usually got me to read at least the first
chapter and skim the rest. You could try questions such as, “Our family has been
working this way with our loved one and we wanted to make sure we weren’t
interfering with anything you’re doing. Could you have a quick look and let us
know?”
Don’t be discouraged if you encounter some initial resistance. Remember
that it took me seven years of arguing with my brother before I started to work
this way! And, in fact, most therapists got into the business because they have a
genuine desire to be helpful.

Cognitive Therapy
Finally, cognitive therapy has proved to be effective for reducing the severity
of certain symptoms in patients with psychotic disorders (see Chapter on
Psychotherapy for Psychotic Disorders). As I mentioned earlier, the fact that we
are dealing with disorders of the brain means that we need to attack the deficits
with both biological and psychological treatments, just as we do when someone
has a stroke or some other form of brain dysfunction. Despite being effective for
many patients, however, cognitive therapy is still underutilized in the treatment
of psychotic disorders in the U.S. whereas in other countries such as the United
Kingdom it is more widely available. Nevertheless, its use is growing. I devote a
chapter to this topic and at the end of this book I provide you with recommended
readings and an organizational resource so that you can learn more about this
important tool for the treatment of psychosis.
 Having said all this, however, there are times when we can’t wait for LEAP
or other forms of psychotherapy to take effect. If someone is off medication and
in crisis we may need to step in and take over. Doing that is rarely easy, and in
the next three chapters I’ll be helping you to recognize when it’s time to seek
involuntary treatment and how to go about it. But just as importantly, I’ll also be
explaining how you can use LEAP to preserve your relationship with your loved
one even when you need to take these drastic measures.
 12
Involuntary Treatment
When I give lectures and workshops on LEAP I am often applauded as someone
who has helped both those who would like to see more options for involuntary
treatment and those who would like to have such laws revoked. The first edition
of I am Not Sick, I Don’t Need Help! has been used by some people to argue that
less intrusive measures, including LEAP, are available and should be used in
place of involuntary treatment and by others who point to the research on
anosognosia to argue that involuntary treatment is the humane thing to do when
someone refuses treatment because of poor insight. So where do I stand on this
issue? We need these laws. But when or whether they should be invoked
depends on individual circumstances.
I have personally been involved in initiating more involuntary treatments
than I can count. I have no doubt that my participation in such treatments not
only saved lives but also helped my patients avoid injury or being arrested and
charged with a crime.Certainly these interventions gave many a shot at recovery
from mental illness. But for me, involuntary treatment is often the last resort. For
all those it has helped, I know that many times it was traumatic for the person
with mental illness and, for many, nothing more than a band-aid (unless the
ordered treatment was continued on an outpatient basis). Over the years I have
learned a lot about when and how to pursue this option and how to optimize the
outcome. It does not have to be a traumatic experience for your loved one or for
you. In this chapter I will talk about those instances when I believe forcing
treatment is necessary, the options available to you, and some advice on how to
do it.

Certain situations are a “no-brainer” and almost

always warrant commitment.
In Chapter 1 I described how Matt’s mother called the police when Matt
became threatening during an argument because she knew from past experience
that he was losing control of his temper and would likely become violent.
Having survived many episodes of her son’s illness, she knew when it was time
to call for help. On the face of it, the signs of illness to which Matt’s mother was
alert were different from those I learned to watch for in my brother Henry. But
the degree of danger they signaled was very similar. The signs for which you
need to learn to watch may also be unique. But whenever a person is acting in a
threatening or dangerous manner either verbally (e.g., “Stop transmitting waves
at me or I will make you stop!” or more blatantly (e.g., “I am going to hit you
if…” or “I am going to kill you…”) or physically (e.g., throwing things, pushing
or restraining another person, lighting a fire in a waste basket, picking up a bat
or knife, locking you out of the house or locking you in a room, etc.) you have to
act. The same holds true if the person is expressing any ideas about ending his
own life. Certain situations are “no-brainers” and almost always warrant
commitment. Obvious among these are those situations in which someone is
obviously about to hurt himself or someone else. In fact, being harmful to
oneself or others is the most common legal standard for committing someone to
a hospital against his will.

If you are the doctor or therapist, it is almost always

good practice to contact the family to share your
observations and concerns.
If you have decided to act, remember that you are not the first person who
has had to commit a mentally ill person and there are many resources available
to you. If you’re are a family member, the first person to contact when you feel
the situation is spiraling out of control is the therapist or doctor who has been
working with your loved one (if he or she is seeing someone). If he has not seen
a therapist or doctor in a long time, or has never seen a mental health
professional, the first person you contact will have to be someone different, and I
will get to that shortly.
If you are a doctor or therapist, it is almost always good practice to contact
the family to share your observations and concerns. Hopefully, you have been
working as a team up to this point. But even if you haven’t, it’s never too late to
join forces. For many therapists, this advice goes against their training and
ethics. What is said in therapy is supposed to stay in the room, with very few
exceptions. But—although most therapists are not currently trained this way—an
exacerbation of a serious mental illness (e.g., psychotic decompensation) is good
cause to breach confidentiality so that you can speak with others who care about
your patient. If the limits of confidentiality are clear up front (“If you become
sick and it affects your good judgment, I will need to inform your family to get
their help.”), there is no ethical dilemma. I have done this many times and have
never been sued or received complaints. More important, it is the right thing to
do.

There are generally three ways to start the ball rolling. So far, I have only
mentioned calling the police. In fact, there are other options I almost always
consider first unless I feel someone is clearly in immediate danger of harming
himself or someone else. Ideally, my order of preference is to: 1) Go together to
the E.R.; 2) Call a mental health crisis team or an assertive community treatment
team; or, if all else fails, 3) Call the police and ask for officers from the
department’s Crisis Intervention Team (CIT). 13

My order of preference is to:

1. Go together to the E.R.
2. Call a mental health crisis team or assertive
community treatment team
3. Call the police and ask for officers from the
department’s Crisis Intervention Team (CIT)

Use your LEAP skills to make this happen

Sometimes, if your relationship is one in which the person still trusts you,
you can ask him to go to the E.R. with you. Explain that you’re worried about
him and want to see if the doctor can help. Use your LEAP skills to make this
happen. And be sure to focus on what the person believes the problem to be.
Once, when Henry was very ill and paranoid about our mother, believing she
would kill him, I said, “You need to get away from Mom right now. Let’s go for
a ride and drop by Kino [the county hospital] so you can feel safer.” He agreed.
One mother convinced her mentally ill daughter to go to the hospital with her
after they had talked about the daughter’s suicidal feelings. The mother, after
doing reflective listening and normalizing her daughter’s feelings about wanting
to die, then asked, “Can I tell you what I would do if I were you?”
“What do you think I should do?”
 “I think we should go together and talk to a doctor just in case that helps.
And if you still feel this way afterwards, then you haven’t really lost anything.”
“But they’ll lock me up if I go.”
“They might. But even if they do, you don’t have anything to lose. If you
still feel this way later, at least you will know that you tried.” By using reflective
listening and not lying about what was likely to happen, she was able to
convince her daughter to go to the hospital.
You may be tempted, but try hard not to trick the person by telling him you
are going someplace else and then ending up at the E.R.. I know many people
who have tried this trick, and I did it myself once, but it’s risky for two reasons:
The person will justifiably feel betrayed and/or might jump out of the car when
he realizes where you are really going. It can work, but I don’t recommend it
over the other options I recommend.

To find out if your community has a crisis team, you

can call any psychiatric emergency room or your local
police department.
Many police departments and psychiatric emergency rooms work in
partnership to keep mentally ill people who commit minor offenses (such as
disturbing the peace) out of jail. A common product of this partnership is the
“mobile crisis team” (a.k.a. crisis team; mobile acute crisis team; psychiatric
crisis unit, etc.). Usually, mobile crisis teams are based in mental health agencies
or hospitals. To find out if your community has a crisis team, you can call any
psychiatric emergency room or your local police department.
The way this type of intervention works is that the mental health workers
come to your loved one and evaluate him on the spot. If they judge that
hospitalization is warranted, they will try to convince your loved one to
accompany them to the hospital. If he refuses, they can initiate the commitment
process immediately. Because they’re trained to recognize mental illness, they’re
less apt than the police to misinterpret your loved one’s behavior as something
else (e.g., criminal behavior, the result of a negative character trait, etc.). They
may also be able to communicate with your loved one more effectively than the
average police officer who has not received the same specialized training. If no
mobile crisis team exists, or none is unavailable when you call, then contact your
local police. When you do, explain that your loved one is mentally ill and in
imminent danger of hurting himself or someone else (if applicable).
 You may naturally be resistant to the idea of calling the police because you
feel that by having your loved one committed you are trying to take control of
his life. And, if you are already struggling with a tenuous or strained
relationship, it is only natural to want to avoid the conflict such a move will
create. This avoidance and the desire to not be hurtful often lead to
procrastination and second thoughts. This is normal but potentially dangerous
for all the reasons I discussed in Chapter 2 (i.e., poor response to treatment when
left untreated for years, poorer course of illness, suicide, risk of violence, etc.). It
is also dangerous because so many people with untreated mental illness are
ending up in our jails and prisons. This is not a good solution. Our jails and
prisons are notorious for providing inadequate mental health treatment. There
are exceptions to this rule, but not many. Worse, the individual who has been
charged and jailed usually ends up with a criminal record that will forever
change the course of his life. In tens of thousands of cases such persons lose a lot
more than 72 hours (the typical involuntary treatment hold) of their freedom. If
you initiate an involuntary treatment the chances of this happening are far less
than when a complete stranger is the triggering cause. But to succeed, it is
imperative for you to believe that commitment is not a permanent violation of
your loved one’s autonomy. In fact, in most cases it is a means by which you can
help your loved one regain control of his life and self-determination. That is why
resolving your ambivalence and guilt early on is vital to the commitment
process.

Resolving your ambivalence and guilt

As right as you think your decision is, it’s difficult not to feel guilty
sometimes and to falter in your resolve. The term “commitment” conjures up
images of physical struggle and straightjackets. When we think of a psychiatric
ward, the picture of a nurturing and stabilizing environment is generally not the
one that comes to mind. Images from the movie One Flew Over the Cuckoo’s
Nest are far more common.
Like most people, I initially had a very negative image of psychiatric
institutions. I wrote in my preface to the first edition of this book:
“Having never stepped foot inside a psychiatric ward, I felt nervous and self-
conscious. Nervous for the same reasons most people are made uneasy when
surrounded by twenty or so people with serious mental illness. Some of them
were pacing and talking aloud to the voices they alone heard. Others were
passionately smoking cigarettes. One man sat quietly, directly in front of me, his
eyes fixed on some far away vision. Was I safe? Were they safe? Was this a hell-
hole or a haven? These were just a few of the anxious questions running through
my mind…I was sure I would somehow be blamed for what had happened to my
brother… for the police, the ambulance, and the restraints he had endured
because of me.”
In fact, after my brother was committed the first time, I learned that the ward
he went to was nothing like what I imagined in my worst fears. Yes, there was a
lot of smoking (although even that is now a thing of the past in most hospitals),
but no one was sitting around in straightjackets screaming. None of the patients
were threatening or bothered me in any way. Henry had been restrained, but that
had been only briefly and in the ambulance. When he got to the E.R. they soon
released him from the lambskin-lined cuffs. The ward he was on, like many I
have worked in, had a day room, or lounge, with a television playing softly in
one corner. There was a ping-pong table on the other side of the room. I was able
to visit my brother and spend time with him in that room. The reality of the ward
quickly allayed my worst fears. The truth is that most inpatient treatment
facilities are designed to be comfortable, humane, and reassuring to the people
who are being treated there.
In order to effectively help your loved one, it is necessary to either work
through, or temporarily put aside, the fears and doubts you have about
commitment. The most important thing you need to do is try to separate myth
from reality. Learn about the commitment process and what the facilities in your
area are like. Many of the consumer-based (or patient-based) organizations
described in the Resources section of this book can help you to learn what you
can expect from your local mental health facilities.
This advice is relevant for some mental health professionals as well. So
many times, those of us who work primarily in outpatient settings hesitate to
commit patients because of a fear of facilities with which we are not intimately
familiar.

Serious mental illness is like any other medical illness.

Serious mental illness is like any other medical illness. If your loved one had
diabetes, you would learn everything you could about the illness and what steps
to take to control the disease. You would try to locate the best centers for the
treatment of diabetes in your area. You would have emergency medical numbers
by the phone and know the closest emergency facility in case anything
unexpected happened. If the diabetes flared up and your loved one became
confused and disoriented, you would not hesitate to pursue hospitalization,
whether your loved one wanted it or not. And I am fairly certain that you would
not feel guilty or ambivalent.

Recognize the warning signs.

If you have gone through previous hospitalizations with your loved one, you
are probably familiar with the early warning signs that signal the need for
hospitalization. You know when your loved one is acting out of character and the
illness has worsened. Take a moment to stop and write down the three most
worrisome changes in your loved one’s thinking, perceptions, and/or actions that
you feel warranted hospitalization in the past (or that you think should warrant
it).
Keep your list in mind and refer to it often. If you are mindful of the early
warning signs, you will be less likely to get caught off guard when the illness
flares up. Here are some common signs that others have considered serious
enough for them to contemplate commitment:
Refuses to take medication when the family and therapist know from past
experience that deterioration and harm are imminent
Verbally or physically abusive
Suicidal ideas (e.g., “I wish I was dead,” “I should just end it all,” etc.)
Harms self (e.g., cuts body parts, bangs head, drinks soap, eats dirt, etc.)
Is destructive of property (own or others)
Stalks others (e.g., incessant phone calls despite complaints, repeated
unwanted visits, etc.)
Homeless, resulting in harm to self (e.g., exposure to extreme weather
conditions without appropriate clothing, poor nutrition, neglect of essential
health care, etc.)
Refuses or is unable to speak with anyone
Delusions of grandeur (e.g., has superhuman powers, is famous, knows
famous people personally, etc.)
Talks to self excessively
Speech is unintelligible
Delusions of persecution (e.g., being watched by government agents,
possessed by the devil, fears loved ones intend harm, etc.)
Command hallucinations (e.g., voices that say “you must kill yourself,”
etc.)
Significant deterioration in self-care and hygiene
 Dangerous due to disorganization (e.g., starts fires unintentionally by
dropping lit cigarettes, etc.)
Inadequate care of dependants (e.g., neglect, isolates children or the elderly
from other family members, etc.)
Poor judgment (e.g., uncharacteristically sexually provocative and/or
promiscuous, stops paying bills, wild spending sprees, gives away all
possessions, loses job due to “eccentric” behavior, fails to keep
appointments, or fails to follow procedures necessary to receive benefits)
Health is deteriorating (e.g., self starvation, refuses to seek medical help for
other serious illnesses, mixes prescribed medications with illicit drugs, etc.)

These examples may or may not be relevant to your situation. I list them for
two reasons: to give you an idea of what others have found to be important signs
and to remind you that you are not the only person who has had to make this
decision. In the Resources section you will find a list of organizations that can
put you in touch with people who have had first hand experience dealing with
commitments (e.g., www.nami.org, www.psychlaws.org and others).

There are less immediate methods: the civil

commitment hearing and court-ordered assisted
outpatient treatment.
In addition to the three avenues just described, there are several less
immediate methods: the civil commitment hearing, guardianship, advance
directives (where the person with mental illness, when doing well, has legally
designated someone to take charge of his treatment should he become ill again),
and court-ordered assisted outpatient treatment (AOT). Since the first edition of
this book was published, more options for AOT have been created in a number
of states across America. Although inpatient involuntary treatment typically
requires that the mental illness make the person a danger to self or others,
persons with chronic psychotic disorders who show certain patterns of behavior
as a consequence of their illness may receive court-ordered treatment on an
outpatient basis. To find out if your state has such a law and how to use it, I
encourage you to go to the Treatment Advocacy Center’s website
www.PsychLaws.org. There, you will also find information on guardianship,
advance directives, and other options.
The Treatment Advocacy Center is funded by the Stanley Research
Foundation and was founded by psychiatrist E. Fuller Torrey and others who
were concerned about the millions of mentally ill Americans who were refusing
treatment because of anosognosia (poor insight) and suffering terribly as a result.
Remember Michael Kass, from Chapter 4, the patient I met in the E.R.? He had
been found hiding in a subway train tunnel. When the police found him, he
hadn’t eaten or bathed in several days and he had made camp dangerously close
to an active track, explaining that “they [federal agents] would never think to
look for me here.” Michael had a history of responding well to medication.
When he was on medicine he was able to care for himself and did not do things
that put his life in danger. But because he didn’t see that he was ill, he always
stopped taking the medicine the moment he was discharged from the hospital,
thus starting the cycle all over again. Michael is one of the many people who
have benefited from AOT.

He understood that I believed I was helping him, even

though he didn’t agree that he needed help.
When you commit someone to a hospital you may feel that you have created
an irreparable breach of trust. But when it’s done from a position of love and
support, it is almost always perceived as a gift. From my personal experience
with my brother, I know that although it took about four hospitalizations, Henry
eventually came to see my interventions into his life (calling the police and his
psychiatrists) as expressions of my love for him. He understood that I believed I
was helping him, even though he didn’t agree that he needed help. This was a
great source of consolation for both of us during the next several years it took for
him to realize that he was in need of treatment (i.e., for us to agree).
In this chapter we’ve talked about how to determine whether and when to
commit. Since you chose to read it, the answer may be that the time to commit is
now. If, after using the techniques I’ve offered and your loved one is still
refusing treatment, you have probably begun to seriously consider commitment
as an option. If your loved one is seriously ill and not getting treatment, he or she
needs help now. Remember that if this same person were suffering from a flare-
up of some other medical condition like diabetes or had been in an accident, you
would not hesitate to corral him into the car and take him to the hospital no
matter how much he protested. Sooner or later, even if he still believes he is not
sick, if you can help him to recognize that what you did was done out of love, he
will most likely be grateful.
 13
How to Do It
I was 21 years old and deciding on a career in psychology when schizophrenia
exploded in Henry’s brain like some impossibly patient time-bomb planted by
his genes. Suddenly, only a day after our stepfather’s death, Henry was talking
about hearing voices and having “crazy” thoughts that couldn’t possibly be true.
He was 29 at the time, but had been slowly becoming odd and isolated since his
mid-twenties.
The night our stepfather died of a heart attack, it was Henry who found him
on the high school track where Dad had gone jogging. I was the first one Henry
called with the news. I called my older brothers and sisters who lived scattered
across the country and left that same night for Arizona, where Henry was living
with our parents. The next morning, Henry met me at the airport.
During the half-hour drive across town in his bright-blue, 52 Chevy pickup. I
struggled with feeling embarrassed whenever we had to stop at a red light, but
not because of the thirty-year-old truck painted the color of a turquoise
Caribbean sea. True, the color was strange even for Tucson in the early eighties
and caused a few stoplight stares, but Henry’s choice of color didn’t embarrass
me. As far as I was concerned, Henry could paint that truck any color under the
sun after all the blood and sweat he poured into its resurrection. Damned thing
could have been pink, and I would still think of Henry as a model of masculinity.
He must have rebuilt motors on a dozen cars in his day. No, I could never be
embarrassed by his bright-blue pick-up. It was the talking to himself that made
me wonder what we must have looked like to other drivers. Henry wasn’t
looking at me. Maybe he couldn’t? Mostly he stared straight ahead, talking and
laughing to himself. Sometimes, he would turn to look out his open window at
the car next to us and just keep on talking nonsense to the passenger in the
adjacent car. At every stoplight I saw perplexed and fearful expressions, a
window rolled up, at one, “the finger.”
Green lights offered some relief from the tension that was building inside
me; no one would notice now, and it was just the two of us. Or was it? Henry
kept right on talking and mumbling to himself as if I weren’t there, almost as if
he were having a conversation with someone I couldn’t see. When I first asked
him what he was saying, he laughed and said, “Ohh, Javi my little brother, he’s
here, ha ha ha.” Then, abruptly becoming serious, “Dad had an accident. Oh, no,
no, no. I was playing the guitar when I killed him, the music got in his head and
he tripped and fell, he was too, he mmmhuh bad Papi his soul you know? His
bow-toe-blow you know?” His speech kept dissolving like that into
unintelligible syllables and nonsensical rhymes mumbled over an occasional
phrase. Mostly word salad, with fragments of coherent thoughts – disturbing
thoughts. After a few more attempts at rational conversation, I gave up. I was
still processing the news he had given me over the phone the night before. As
odd as my brother sounded, I was playing the guitar when I killed him, I was
mostly thinking of my mother, who had just lost her second husband, and about
myself. I was not yet concerned about what was happening to Henry.
By the time Henry and I arrived at my parents’ house, now my mother’s
house, I had successfully tuned him out. But over the course of that longest day
of my young life, it became clear to me that he was very seriously sick. He was
psychotic. Maybe even schizophrenic. Most people, including my family at the
time, don’t know what that means. But I did. I was a senior in college studying
psychology and I recognized the symptoms, among them hearing voices and
delusions. And so by the end of that week, because I was the “family
psychologist” and also the one closest to Henry, I was elected—given the task of
getting Henry into the hospital, or, more to the point, away from the rest of us
who were grieving and reeling from our stepfather’s unexpected death at the age
of fifty-eight. We had a funeral to plan, a loved one to bury, and no interest in
dealing with Henry’s mental illness.
At first I tried to convince him he was sick and needed help, and as you well
know, utterly failed. Unfortunately, being new to all this, I immediately jumped
to trying to get him involuntarily committed. But the psychiatrist in the E.R. with
whom I spoke wasn’t having it. He asked me, “Is he threatening anyone?”
“No,” I answered truthfully.
“Is he threatening to kill himself?”
“No.”
“Then there’s nothing I can do. Call back if he becomes a danger to himself
or others.”
Henry and I went round and round that week, but when I went back to New
York he was still in the throes of his first psychotic episode. About a month later,
after the rest of the family had cleared out, I received the first of many such
phone calls from my mother. “You need to come here quick. Henry is not in his
right mind. He needs to be in the hospital.”
I returned to Arizona, and this time I was more successful. Henry had been
talking about suicide. I called the police, told them he was mentally ill and
suicidal, and they took him to the hospital. He was back in three hours! He was
angry, hurt, and felt betrayed. “How could you call the police on your own
brother? Did I steal from you? Did I try and hurt you?!” Worse than that he felt
vindicated. “See! There’s nothing wrong with me. Even the psychiatrist said so!”
Actually, what had happened is that Henry quickly figured out that his
talking about feeling suicidal was what had triggered the police taking him into
custody. He realized that as long as he didn’t talk about it, he would not be
admitted to the hospital. And he was right.
As we talked long into that night, I realized I had to try again. Without telling
Henry what I was going to do, I called the police the very next night. I told them
he was mentally ill and threatening suicide. He was also drinking too much, but I
didn’t add this fact. When they arrived, I stayed locked up in the bedroom with
my mother so that Henry would have to answer the door. That was one of many
mistakes I made that night. Fortunately, Henry went quietly, but the damage I did
to our relationship took a long time to heal.
Although I was mostly well intentioned, I made many mistakes I now wish I
hadn’t. Some of what I did was positive, like talking to the psychiatrist after
Henry was released the first time I tried to get him hospitalized. But still, I made
some serious mistakes that will be instructive to talk about here.

What I should have done

The first mistake I made was not encouraging Henry to talk with his
therapist. He had seen a therapist the year before, for depression, and although I
knew that, I did not try to utilize their existing relationship. I knew Henry liked
Roy, and I should have called him for advice. Ideally, I could have suggested to
Henry that he meet with Roy to talk about Dad’s passing and just dropped the
whole “you’re mentally ill and need to go to the hospital” issue. But I wasn’t
thinking about Henry’s perspective yet. I was being the family shrink.
After deciding to go the route of an involuntary admission to the hospital, I
should first have checked to see if there was a crisis team, staffed by mental
health professionals, that could come out to the house and evaluate my brother.
Instead, I went straight to 911. Before I go further, I want to be very clear
that I am not being hard on myself. I was new to all this. You should not be hard
on yourself either. The only time I feel deeply guilty about my relationship with
Henry is when I don’t learn from my mistakes.
The most obvious, and frankly frightening mistake I made was letting Henry
answer the door when the police came that second time. He was psychotic. He
was paranoid. Although more and more police are now being trained to deal with
mentally ill people, back then it was very rare. A terrible tragedy could have
unfolded that night if Henry had become frightened and began speaking
delusionally and in a threatening manner to the officers. Had they felt they were
in danger, they would have ordered him to the ground, and he, very likely, would
not have been able to comply because he was so disorganized and barely in
touch with reality.
Instead, I should have met the officers outside and explained that my brother
was mentally ill, had no criminal history, and was not threatening to hurt anyone
but himself. By saying these things I would have made it clear that they were
going to meet someone who was loved and that I was asking them to take great
care. But I did neither of those things, and I was very lucky that night.
Finally, I should have telephoned the psychiatrist when Henry arrived at the
ER so that Henry wouldn’t again deny being suicidal and so be released. Better
yet, I should have gone down in person. But again I was lucky, because Henry
was so upset about opening the door to find several police officers wanting to
“arrest” him that, when he spoke to the psychiatrist, he apparently didn’t think to
hide the fact that he had been feeling suicidal.

The system is set up to put a wall between mental

health professionals and their patients’ families
Once Henry was admitted to the hospital, I made the very common mistake I
talked about in Chapter 2. Exhausted by the whole experience, I took a break and
did not stay involved. Although I went to a family meeting and visited my
brother (he refused to speak to me during these visits), I did not attempt to stay
in touch with his treatment team or participate in the discharge plan. Part of the
reason was naiveté on my part and part of the reason is that the system is set up
to put a wall between mental health professionals and their patients’ families.
One of the most important things a family member can do is to stay active
and in touch with their loved one’s mental health care providers. This is true
whether your loved one is in the hospital or an outpatient seeing his therapist
once every several weeks or more. During our one meeting with Henry’s doctor
and social worker, my mother and I should have asked about the discharge plan
and shared our observations about what we thought would and would not work.
The most important observation we could have shared is that Henry did not think
he was sick. We should have held the professionals accountable with the
question: “Given that he does not believe he’s ill, what good will your
prescription and outpatient appointment slip do?”
Henry agreed to renew his relationship with Roy, his previous therapist. But
once again, I did not attempt to open a line of active communication with the
therapist. For example, I did not ask Henry if I could go to his first session to
explain my view of the events that had led to his hospitalization. Within days of
leaving the hospital Henry had stopped taking the medicine, and within weeks he
apparently stopped going to see Roy. I wasn’t sure about the latter because I was
not communicating with Roy and had to rely solely on what Henry told me. In
his defense, at that time my brother mostly wanted me to stop intruding on his
life and telling him he was sick. Giving me permission to talk to his therapist
was probably not going to be high on his list of priorities. But the point is, at that
time, I never tried.
I did eventually try, and I encountered the same problem you have, or soon
will: No one would talk to me. Especially now, with the new HIPPA regulations
in place, mental health professionals are more and more often saying things like,
“I can’t even confirm that your brother is a patient of mine, much less talk to
you!” It’s enough to make you want to scream. And yet, this obstacle is not
coming from an evil place, nor is it unmovable.

If you are a family member, remind the therapist that

you can share your observations and concern without
violating confidentiality laws
If you are a family member, you can share your observations without
violating the doctor-patient relationship. If someone tells you he or she can’t talk
with you, say “I know you can’t, and that’s not what I am asking you to do. I am
not even asking you to verify that my loved one is your patient. All I am asking
is that you let me share some observations and concerns about my loved one. All
I ask is that you listen for a minute.” There are no regulations prohibiting a
therapist from listening! Try it and you will see that it opens at least half the line
of communication. The other half, getting the therapist to talk with you, requires
that you do something further.
As I mentioned earlier, therapists can pave the way for this type of
collaboration by clarifying the limits of confidentiality with their patient up
front. (i.e.,” I would like to hear from your family from time to time to get a feel
for how they think you’re doing. Also, if you become sick, I may want to talk
with them to get their help.”). The bottom line is that if the patient knows that
certain types of communication will occur between doctor and family,
confidentiality is not being violated. The rules have to be a little different when
you are dealing with serious mental illnesses because judgment and insight can
become severely impaired. That’s why we all need to talk to one another and
work as a team.
When families work actively with the treatment team, they increase the
quality of care. It’s not something we’re proud of, but most doctors and
therapists will feel more accountable when a family member is actively
involved. Better yet, we become much better at detecting and responding to any
worsening of the illness than when we work in isolation.
When I give talks I often discuss the vital importance of building a
“Treatment Triad.” What I mean by this is building teamwork among the
consumer, his loved one, and the mental health professional. When all three are
working together, stabilization and/or recovery become much more likely. To
become more effective at building a treatment team, you must overcome some
common barriers, including the ones I mentioned above. Also, you must identify
personal barriers such as your own negative preconceptions about “the other
side.”
If you’re a therapist, you have to overcome your preconceived belief that
family members may distract you from your work. One misconception I have
had is that family members call me to vent and get free therapy. I am not proud
of that thought, but I often have it when I am ending a very long day and a
family member wants to talk to me about how hard their relative’s illness has
been on them. Of course I understand and sympathize, but that’s not the point.
The problem is that, if you have more than one patient (which we all do), it’s
impossible to be available to all your patients’ involved family members in this
way. What I have learned, however, is that if I explain my limitations and
suggest that the stressed relative think about getting help for him-or herself, it
helps to refocus the conversation on what we should be talking about. If the
family member is unwilling to get professional help, I will strongly suggest he or
she go to a NAMI meeting to gain support from other people in the same
situation.
If you’re a family member, you may make the mistake of thinking that an
unresponsive therapist (one who won’t return phone calls, won’t talk to you,
etc.) doesn’t care. I can’t tell you that you would be wrong, but I can say that in
my experience this assumption is more likely than not incorrect. Most therapists
(RNs, MSWs, Ph.D.s, Psy.D.s and, yes, even M.D.s) got into this line of work
because they care. They chose the career because, like me, it has personal
meaning for them and they want to help. But if that’s the case, why do they
sometimes appear so uncaring? In short, the reason is often “burn out.” That
said, however, you can help by being focused on specific issues when you call
(e.g., “I want to tell you about some warning signs of relapse I am seeing.” Or “I
am concerned about the discharge plan because…”). Don’t call to vent. Call a
friend, relative, or your own therapist to get that kind of support.

Finding and using a mobile crisis team

While maintaining contact and working with doctors is the best possible
solution, doing that not always possible. If you are dealing with a loved one who
is an adult, who has never been committed, and who refuses to see a doctor, you
may find that you have no one to call. Even if this is the situation, however, you
needn’t feel that you are alone or have only the police as a resource. That was, in
fact, my situation when Henry was committed for the first time. What I didn’t
take advantage of, however, is the fact that most hospitals with a psychiatric care
unit also have a mobile crisis team. This team is usually made up of Master’s
level psychologists, social workers, or nurses who perform home visits. Like
paramedics, they’re typically in close contact with a doctor who is stationed in
the psychiatric emergency room. Mobile crisis teams are trained to evaluate,
refer to outpatient treatment, and, if necessary, hospitalize. To find out whether
your community has a mobile crisis team, you should call your local hospital and
ask for the psychiatric emergency room. Usually, a psychiatric nurse will answer
your call, or, if not, the psychiatrist on call. Explain that you are concerned about
a loved one and ask what resources are available. The nurse or doctor will be
able to tell you about the mobile crisis team and how to contact them. Add this
number to your list of doctors and emergency numbers. Sometimes just knowing
that it is there can be a relief.
You will also be able to ask about other outpatient services in your
community. Even if you haven’t reached a crisis point with your loved one, you
should feel free to call the psychiatric emergency room or any other local mental
health facility. Don’t worry about interrupting someone in the middle of an
emergency. If you have, he or she will let you know and ask you to call back.
When I was covering the psychiatric emergency room during my training, I
spent as much time fielding such calls as I did evaluating patients in the ER.

Calling 911 and asking for CIT officers

 If you call 911, be sure to ask if the law enforcement department you have
reached (metro police, sheriff’s department, highway patrol, etc.) if they have a
Crisis Intervention Team (CIT). Many now do and many more will have them by
the time this book hits the presses. Ask specifically for a CIT trained unit to
respond.
CIT officers have been trained in how to separate criminal behavior from
mental illness and more importantly, how to communicate effectively with an
agitated person suffering from psychosis. At LEAP Institute we have provided
adjunctive training seminars for CIT officers around the country. In my
experience those officers who volunteer for the extra training—as much as 40
hours of additional classroom time involving reading, lectures and role-plays—
are compassionate, understanding and have the skills to help calm someone who
is psychotic and paranoid or simply frightened. They arrive at the scene with
safety first and foremost on their mind but also with an understanding that they
are dealing with a person who has mental illness and who needs first and
foremost to be listened to, calmed down and convinced to come safely and
quietly for an evaluation.

The evaluation
After you take your loved one to the hospital or call the mobile crisis team or
CIT officers, you should immediately ask to speak with the doctor who
conducted or supervised the evaluation. There are several reasons why it is
important for you to speak with the doctor in charge of your loved one’s case
sooner rather than later. The first is the obvious reason discussed above: You are
forming a team with the doctors to insure that your loved one gets the care that
he needs. There is currently no cure for serious mental illnesses, so it’s a good
idea to build a network of people who will be familiar with you and your loved
one.
Another reason to make sure you talk with the doctor in charge may sound a
bit cynical, but it is not. It is realistic. Sometimes doctors working in hospitals
don’t have the time or resources to give everyone the quality of attention that
may be warranted. If you are a mental health professional, it is usually easier to
get the doctor’s attention. If you are a family member, you may be asked to call
back in the morning. In either case, don’t be put off. Act as you would if you
were dealing with an accident or the flare-up of some other medical illness like
heart disease. In these instances you would no doubt approach the doctor to find
out all the details of the diagnosis, prognosis, and treatment. Find out what’s
going on and what the plan is. If nothing else is gained, you will at least have let
the doctor know that his patient is your loved one and that you hold him
accountable for the care that is given.
The doctor who does the diagnosis and intake for your loved one is going to
be your biggest ally if your loved one needs to stay in the hospital longer stay
than the 72 hours generally mandated by an emergency commitment. The three-
day holding period is all that many states allow without some kind of civil court
hearing. The admitting doctor is experienced with the commitment procedure for
your state. The length of stay ordered will depend, in large part, on the
recommendations of the doctors caring for your loved one.

One final word about calling the police

The idea of having to call the police for help with a loved one seems very
dramatic and somehow wrong. We usually call the police when a crime has been
committed. However, you may need to call the police when your loved one is out
of control because they’re the ones trained to act in situations where someone is
not in control of his behavior.
Not all police departments offer CIT training. If your local police department
does not offer such training, contact the Memphis Tennessee police department
to learn of their crisis intervention program or check with the websites I gave
you above. The Memphis Police Department’s CIT program was recognized at a
White House conference in 1999 as a model system for “decriminalizing” the
mentally ill. Ask for literature and pass it along to your local police. I was
fortunate in that when I called the Tucson police about my brother in the early
1980s they had received such specialized training. Nevertheless, whenever I
called the police to ask for help getting my brother to the hospital, my mother
would become angry with me. She felt protective of Henry and believed that
involving the police was somehow criminalizing him.

If you had a five-year-old child who ran into the street,

you would pick him up and restrain him. If he had a
temper tantrum and threatened to harm you, you would
send him to his room.
One explanation I gave my mother then and have since given many family
members and mental health professionals is the following: If you had a five-
year-old child who ran into the street, you would pick him up and restrain him. If
he had a temper tantrum and threatened to harm you, you would probably send
him to his room. When someone is a full-grown adult, you can’t physically do
any of these things. But the police can.

In my experience, police officers usually restrain and

transport people with mental illness with respect and
dignity.
In my experience, police officers usually restrain and transport mentally ill
people with respect and dignity. If you feel that your local police force has not
received the training they need to elevate their understanding and sensitivity to
persons with serious mental illness, contact your police chief, sheriff, or police
commissioner and suggest that they learn about the model used by the Memphis
police department (see www.NAMI.org for information).
Very often, when you call the police, there will be a scene. Your loved one
will resist being taken to the hospital, but that isn’t always the case. Sometimes
the police come and are not able to help because everything looks fairly normal
and calm. I used to work on a mobile crisis team, and we would call this sudden
calmness the “ambulance cure.” We coined the phrase after evaluating a man
with schizophrenia who had been screaming threats at the top of his lungs in a
24-hour convenience store. He accused the clerks of spying on him and
demanded that they stop. He was delusional and hearing voices that he told us
about when we arrived. After conferring with the psychiatrist at the hospital on
our radios, we all agreed that he should be brought in for a 72-hour observation
period. However, by the time the ambulance arrived to transport him to the
hospital, he was visibly calmer. And by the time he was being evaluated by the
ER psychiatrist, he was denying that any of it had happened. He knew that if he
talked about the voices or his paranoid fears the doctor would admit him to the
hospital. And since he didn’t think he was ill and didn’t want to stay, he avoided
the topics he knew would get him admitted. Fortunately, the psychiatrists we
worked with trusted our judgment and did not make rash decisions. After three
hours in the ER, he began to get agitated again. He started mumbling to his
voices and talking about his concern that the clerks had bugged the interview
room.
If your loved one has calmed down by the time the police arrive, be sure to
tell them everything that happened in detail. If threats were made, don’t be shy
about talking about them. If furniture was turned over and dishes broken, don’t
straighten up prior to their arrival. Be certain to tell them that they’re dealing
with someone who has a history of serious mental illness and that you are very
concerned for his safety. Ask them to take your loved one to the hospital if they
don’t offer to do so. If they refuse, ask to speak with their supervisor.
Below are some tips to help you when you call the police:
Always ask first for a CIT officer (remember the department you reach may
not have such a program yet)
Remember that police officers are often, but not always, trained to deal with
someone who is mentally ill.
Make it clear to the dispatcher that the situation involves someone who is
mentally ill. That way the police will be aware of what they’re walking
into.
If possible, meet the police at the door, tell them where your loved one is,
why you are concerned, and what kind of behavior they will encounter
when they enter.
Be sure to tell them whether or not your loved one has access to any type of
weapon. If there is no weapon, the officers will be less anxious and can
focus first on the safety of your loved one. If there is a weapon, they need to
know.
If your loved one has thrown or broken anything, don’t try to clean up
before the police come. Whatever damage your loved has caused may be
the only overt sign of illness the officers can see.

Finally, if you need to call the police to help you with your loved one, please
don’t blame yourself for doing something awful or inappropriate. The police
regularly respond to situations involving people who are seriously mentally ill.
Also, remember that you are not alone. The Resources section at the back of this
book lists organizations that help families who are dealing with mental illness,
and many of the web sites offer personal accounts of how other people have
handled the same or similar situations.
 14
How to Survive an Involuntary Treatment
Even if you believe that seeking an involuntary commitment was the best thing
for your loved one, you will probably suffer some emotional fallout. You know
that your loved one is sick and you know that, at least for the time being, forcing
him to take medication was imperative and maybe the only chance he will ever
have to get better. But he is likely to feel betrayed by what you have done and to
be not very open to talking with you about why you did what you did. Worse yet,
you may feel that he is right. If either of you believes you have acted like a
Judas, there can be no partnership or treatment agreement. That is one of the
reasons that dealing with his feelings of betrayal is vital. The other reason, of
course, is to regain trust and preserve your relationship.
During the initial days your loved one is in the hospital, it is only natural that
he will be angry with you. Wouldn’t you be angry if you thought you were not ill
and someone had called the police on you, resulting in your being forced into a
psychiatric ward? I would be furious! Add to the anger the fact that your loved
one is probably sicker than usual (otherwise, why do what you did?) and it may
not be possible for you to have a meaningful conversation just yet.

It is imperative that you visit as often as you can

without overburdening yourself.
This doesn’t mean that you should avoid going to the hospital to visit.
Sometimes well meaning hospital staff may encourage you to wait if they feel
you will be upset to see your loved one so ill. Other times, your loved one may
refuse to see you. But it is, nevertheless, imperative that you visit as often as you
can without overburdening yourself. The reason for this is that many people who
are forced into the hospital feel that their families want to get rid of them and
have abandoned them. It’s harder for them to believe this if you try to visit the
hospital every day, or close to that, even if it’s only for five minutes to say, “Hi, I
love you.”
During Henry’s first real hospitalization, after the time he had been turned
away at the E.R., he refused to speak with me when I visited. I remember the
first time I walked in. He was sitting in front of the television in the common
room (called the “day room” in most hospitals). When I went over to him and
said hi, he gave me one quick angry look, got up, and went directly to his room.
I asked the nurse to get him, but she reported that he didn’t want to talk with me
and suggested I leave. Nevertheless, over the next two weeks I went back again
and again despite the fact that I mostly sat in the day room and read the
newspaper. It was a long drive to the hospital, so I figured I might as well make
the most of my effort and stay a while. More than that, however, I also felt very
guilty about what had happened and hoped that if I stayed long enough Henry
might come out of his room and agree to talk with me. Eventually, he did, and at
the time I had the good sense to apologize. Although, as I’ve said, I did some
stupid things as well, that apology was a vital first-step toward repairing the
damage done by the involuntary hospitalization.
When I encourage you to visit, however, I’m basing my recommendation not
only on my experience as a family member but also on my experience as a
doctor who has worked in several wards like the one my brother was in. I see
how patients react when family does not visit. I see how easy it is to feed the
seeds of feeling betrayed and how that affects what happens after discharge from
the hospital. So, do your best to visit regularly, but, at the same time, you need to
remember to take care of yourself during this period. If trips to the hospital are
draining and too overwhelming, stay just for the few minutes it takes for your
loved one to see that you are there and haven’t abandoned him. Then go home
and try to relax, watch a movie, go out to dinner with a close friend. Letting
yourself brood endlessly about what’s going on in the hospital will not help
anyone and can be detrimental to you and your relationship with your loved one.
If you are not seeing a therapist of your own, this may be a good opportunity for
you to find someone you can talk to about your situation. Family organizations
like NAMI are particularly helpful in this regard.
At some point during or after the hospitalization, you will need to begin
looking for an opportunity to talk with your loved one about what happened. It is
very important that you talk about what you did and also about how it made your
loved one feel. There is no perfect script for what you should say in this
conversation other than making certain that you are speaking from your heart
and touching on the themes I describe below. It may be as simple as when I said
to my brother, “I had to call the police. I couldn’t have lived with myself if I
didn’t.” Or, “I know you feel angry and betrayed, but I would have felt guilty
and as if I had let you down if I didn’t get you into the hospital.”
 Turning betrayal into loyalty
A conversation aimed at dealing with feelings of betrayal should always start
with an apology and the statement that you understand how your loved one feels.
“I know you don’t feel you needed this, I know you are angry with me, I’m very
sorry that what I’ve done is so hurtful to you, but I would like to tell you why I
felt I had to do it.” In large part, this conversation is more of an apology than a
justification, and you need to be careful not to become accusatory or defensive in
any way. Acknowledge your loved one’s feelings of betrayal while pointing out
that you were following your conscience.

I am not recommending that you apologize for what

you did, but rather for how it made your loved one feel.
You may balk at the notion of apologizing. After all, you were acting in your
loved one’s best interest so you have nothing to be sorry for. I agree. I am not
recommending that you apologize for what you did, but rather for how it made
your loved one feel. You and I would feel the same way and appreciate the
empathy that is conveyed with an apology.
Here are some general Dos and Don’ts to help you to have a conversation
that will aid in mending the relationship.
Do
1. Acknowledge his feelings of betrayal.
2. Ask for forgiveness.
3. Explain why you felt you had to do what you did.
4. Be honest that you would do it again.
Don’t
1. Deny his feelings of betrayal.
2. Expect to be forgiven right away.
3. Blame your loved one for what you felt you had to do.
4. Be misleading about what you would do in the future.
There are four main points you should try to convey to your loved one: your
regret, your fear that he will be angry with you and not understand your
perspective, why you felt you had to take the actions that you did, and an appeal
for his forgiveness.

1. Regret
 It is very natural that you may feel regret about “locking-up” your loved one.
It’s not unlike the regret we feel whenever we impose a restriction on a child
(e.g., when you tell a child “go to your room”). The fact that it was done with the
best of intentions doesn’t mean that it was easy to do or that you are not sorry
you felt you had to do it.
When you have the conversation with your loved one, let him know that you
regret having had to commit him and wish you hadn’t had to do it. But don’t
blame your loved one for putting you in the position of having to do something
you’d rather not have done; this will only lead to estrangement, not an alliance.
Instead, simply state your feelings. You feel sorry that your conscience led you
to do something you know your loved one felt was hurtful. In the space below,
write down any feelings of regret you have about the commitment and how you
might say this to your loved one.
Did you write something you will be able to convey to your loved one in a
way that helps him understand the dilemma you were in? Put yourself in the
shoes of your loved one for a moment and read what you wrote. Is it something
you would respond to well? Would you feel blamed? Or do you feel that you
would understand how the person who committed you felt about doing it?

Emphasize that your values and love led you to do

what you did, not that you were “right” to do it.
Don’t speak in absolute truths like, “I had to do this; I had no other choice.”
Instead say, “I felt I had to do this, I felt I had no other choice.” Emphasize that
your values and love led you to do what you did, not that you were “right” to do
it. After I learned to talk to my brother in this way (today he very rarely is
hospitalized and almost never against his will) I would say, “I wish I didn’t feel
the way I do, I am so sorry that I pushed this on you. I know you don’t agree
with my view but I hope you can forgive me. I only did this because I felt it was
the right thing and because I love you.” From there, the conversation generally
went something like this.
“If you loved me you would never have called the police on me! I am
angry!”
“Henry, I would feel the same way.”
“Then why did you do it?”
“Because—and I wish I didn’t feel this way because I know it’s hurtful to
you—but because I was scared and felt you needed to be in the hospital.”
“You’ve been brainwashed by the psychiatrists. There’s nothing wrong with
me.”
“I understand and respect your perspective. Do you get mine?”
“You were scared and thought you were trying to help me,” Henry said.
“Right. And I am really sorry we’re so far apart on this but glad you can at
least understand that however misguided you think I am, my intentions were
good. Do you believe that?”
“I do,” he said, much to my relief.

By empathizing and normalizing (saying “I would feel the same way”) his
experience of what I had done to him, I opened the door to Henry’s being able to
see the important truth, which is that, regardless of who was right (him or me)
about his being sick, I did what I did because I felt it was the right thing to do
and because I loved him.

2. Fear
Explain what it is you were afraid would happen if you didn’t have your
loved one committed. Preface your fears by acknowledging that your loved one
did not share your concern (e.g., “I know you weren’t worried about…”). Then
ask if he would like to hear what you were worried about (e.g., “Can I tell you
why I was worried?”).
As you explain the fears you had, it is important that you phrase them in such
a way that you are not making accusations about anticipated behavior. Also,
explain that your fears grew out of the fact that you care for him so deeply, not
from expecting him to behave badly. Keeping in mind what was said above,
write down a few of the fears you think you could share with your loved to help
him understand your motivations and mend the relationship.
Have a look at what you wrote and refer to the dos and don’ts given above.
Did you follow the advice I gave? How would you feel if the tables were turned
and you were hearing your words played back to you? If you think you would
feel cared for and not defensive, you are on the right track.

Don’t ask him to agree; ask only that he understand

and forgive you for following your conscience.

3. Actions
Explain why you took the actions you did. Remind your loved one of the
event(s) that precipitated your calling the police (or crisis team) or taking him to
the hospital. In my case with Henry, it was his expressing suicidal thoughts and
my fear that he would harm himself. As you write down the reasons for your
actions keep in mind that you don’t want to sound accusing or angry. This is a
conversation in which you are trying to convey your reasons for having your
loved one committed. Don’t ask him to agree; ask only that he understand and
forgive you for following your conscience. Write down the reasons you pursued
a commitment.
By now you know what I am going to ask. Have a look at what you wrote
and see if you followed the dos and don’ts given above. Next, ask yourself how
you would feel if the tables were turned and you were hearing your words played
back to you. Would you feel like arguing against the points made or would you
be able to hear them without getting defensive?

4. Appeal for forgiveness and understanding

What you are asking your loved one to do is try to comprehend why you did
what you had to do, how much you love him, and how much his forgiveness
means to you. Don’t be afraid to let him have the upper hand. In other words,
stand firmly on your convictions but don’t try to justify yourself or your
decision. After all, you won! Think of the power you wielded. Your loved one
was forced to take medicine (how can he be forced to take medicine without
being forced into the hospital?) or forced into a hospital against his will. You
can afford to be magnanimous. You are asking your loved one to forgive you;
that is all. Listen carefully to what he has to say and see where the dialogue
leads.

If your loved one refuses to talk with you about the

commitment, write it all down in a letter
Don’t expect to be successful after only one conversation. It will take several
discussions before your loved one’s misconceptions about how you feel and why
you did what you did can be corrected. If your loved one refuses to talk with you
about the commitment, write it all down in a letter. In fact, even if you have had
successful discussions, it’s useful to write a letter that covers the four points
discussed above. Serious mental illness sometimes makes it difficult for people
to remember. Having your explanation and appeal for forgiveness in writing will
help your loved one remember what you said.

I wish I could end this chapter by saying that if you follow all the above
steps you will have turned your loved one’s feelings of betrayal into feelings of
understanding and empathy for your predicament. But that would be unrealistic.
Whether your loved one is able to forgive, let go of feeling betrayed, and
understand your point of view will rely in large part on his innate capacity to
accomplish these things. However, I can promise that if you follow the advice
given here, you will feel better about what you have done and reduce the degree
of conflict in your relationship with your loved one.
 15
The Surprise
I’m sure you remember that one of the first things I told you, way back at the
beginning of this book, was that your goal was not to get your loved one to
admit he or she was sick but to get him to follow his statement “I’m not sick,”
with the statement “But, I could use some help.” In other words, the techniques
I’ve been teaching you are not aimed at getting the person who is mentally ill to
gain insight into being ill; they are directed specifically at getting him to find
reasons to accept treatment despite what he believes.
If you’ve reached the point where your patient or loved one has made that
commitment, what you want to do now is make sure you don’t revert to old bad
habits like giving your opinion without first asking if the other person wants to
hear it. You need to maintain and build on the collaborative dialogue you’ve
begun, and while you may be tempted to remind the mentally ill person that
“doctor knows best,” or, even worse, “father knows best,” you’ve got to
remember that those so-called wise words aren’t going to make one bit of
difference to the one you’re trying to help. In fact, they will more than likely just
blow up the bridge you’ve so carefully been building between you.
But you know all that already, right? So what’s the surprise? The surprise is
that when people with a serious mental illness are in treatment, and when they
have the kind of relationship I’ve been trying to help you build with them—one
that allows them to feel their point of view is respected and to trust you—they
will begin to develop insight.
Remember Vicky, whose interview with Dr. Kohut you read in Chapter 6?
Initially, Vicky continued to believe she was “cured” of bipolar disorder but
agreed to continue taking her lithium on a trial basis for 6 months and then, if
she decided to go off it, to do so in conjunction with her doctor. She was able to
make this commitment because Dr. Kohut had allowed her to understand that she
was, ultimately, the one in charge of whether or not she would take the medicine.
By doing that he had won her trust and shown her that he honored and respected
her feelings. After a while Vicky was also able to see what happened when she
lowered her dose or discontinued her medication, and she gained true insight
into the relationship between taking the medication and remaining
asymptomatic. When she recognized that without the lithium she was getting
“worn out” again, she asked to be put back on medication.
And then there was Dolores, who kept losing jobs because she was holding
conversations aloud with the voices in her head. At first Dolores didn’t see any
relationship between her getting fired and going off her medication. In fact, she
initially believed that the medication was making her hear voices. It took a long
time, and several more hospitalizations, but Dolores did gradually come to have
some insight into the fact that when she stopped taking medication she talked to
herself more, and that this was likely to make people think she was “nuts.” Like
Vicky, she developed insight into how medications helped her with a problem
she was having. Vicky didn’t call the problem bipolar disorder; she called it
getting “worn out.” Dolores’s problem, as she saw it, wasn’t having
hallucinations; it was talking aloud to herself. Nevertheless, both these women
developed insight into how the medications helped them with their problems as
they saw them. The surprise, then, is that over time people do begin to redefine
their problems as mental illness, whether or not they define mental illness in
exactly the same way you do.
In psychology, we call this the change paradox. When you stop pushing
someone to change, often they find reasons to change all on their own. I think
that is what happened not only with Vicky and Dolores but also with other
patients who have benefited from the kind of relationship I’ve been talking about
while taking their medications. Given the room to explore their situation with
someone they trusted and who did not preach or tell them they were sick, they
were able to develop insight. First the insight was about positive outcomes
linked to taking medicine and then later, into having a mental illness.

We know today, right now, that building a respectful

and trusting relationship is the key to helping someone
with poor insight accept treatment for mental illness.
I think the anecdotal evidence is pretty compelling, but there are also
scientific studies to show that developing the kinds of relationships I’ve been
talking about can and does ameliorate lack of insight in patients with serious
mental illness. In a study by Dr. Roisen Kemp and her colleagues, published in
the British Journal of Psychiatry in 1998, the researchers found that medication
adherence and insight improved over an 18 month follow-up period after only
six sessions of MET. Remember, LEAP is based on MET which seeks to create a
collaborative relationship with the person in “denial”. This is one good example
of how building the mutually respectful and trusting relationships we have been
talking about can help with both adherence and insight. And, as I mentioned in
Chapter 10, new research on medication may also help in our battle against
anosognosia. Regardless of what happens with the research on medication,
however, we know today, right now, that building a respectful and trusting
relationship is the key to helping someone with poor insight accept treatment for
mental illness.
Whether you are a family member or a mental health provider, what this
means is that when you create a nonjudgmental and trusting relationship, the
person you are trying to help will find reasons to be in treatment, and over time,
develop insight about having a mental illness. It may take a year or two of
staying in treatment, but the pay-off over a lifetime is incalculable.
As you go forward, however, you need to remember that you are a member
of the team. You need to be strong and well rested. If you do more than you
should, you will lose motivation and risk “burn-out.” Burn-out is a term used by
mental health professionals to describe the feeling of complete exhaustion that
comes from having been immersed in other peoples’ problems for too long.
Exhausting yourself will only make you less effective and your loved one or
patient feel like a burden.
If you are a family member, I want to add one final word from one family
member to another. You are in a unique position to help your loved one learn
how to cope with mental illness. You knew your loved one before the illness
struck, which means that you know the core person who is often eclipsed by
symptoms of the disease. And when someone who is seriously mentally ill feels
that you see him for who he is, not just for the diagnosis he has been given, he
will be open to learning from you.

The Surprise for Henry and Xavier

Henry never developed insight into being mentally ill. But the last time I saw
him, in the days following our mother’s funeral, I can’t tell you how much
comfort I received from him because it was more visceral than verbal; I know he
felt the same. Yes we talked, but our shared battles, betrayals and ultimately our
reconciliation, made possible by our respect for each other, was something we
felt in our bones. That was three years ago. On the drive back to his house, on
our last night together, my brother told me he felt I saw him for who he was.
Henry was very kind, smart, funny, insightful (about most things), and creative.
Yes he was a pain in the ass (and I to him) during the early years of his illness
when we argued about whether or not he was mentally ill and needed treatment.
But I was to blame for that more than he. Henry was able to laugh at life. I saw
him and liked him and he knew that.
I learned a lot from my brother—a man most people gave a wide berth to
because of his explosive eruptions into laughter for no apparent reason and his
conversations with the voices only he heard. He taught me how to throw a
baseball, ride a bicycle, and the power of humility. When we were growing up,
he brought humor and magic into my life (like the time, when I was five, that he
convinced me I had just missed Santa Claus flying by our window). More
recently, he taught me about compassion, patience, perseverance and most
importantly, forgiveness. I feel very fortunate, as you will read in the next
section, that we had a strong friendship for many years before he died.
LEAP would not exist if not for Henry Amador. It was not my creation alone
or that of my collaboration with Aaron (Tim) Beck, M.D. and other colleagues
and patients. More than anyone else Henry helped me to develop LEAP and
without it, I am sure we would have lost many years of closeness, laughter and
love.
In the next, and last, section of this book I give you the details of where
LEAP comes from theoretically, a summary of recent research on cognitive
behavioral therapy for schizophrenia (which LEAP draws on in part) and a
review of recent research on the link between violence and poor adherence. I
next make an argument for why we must include anosognosia in our diagnostic
manual, not only for schizophrenia, but for other psychotic disorders. And
finally, I tell you the end of Henry’s story. Perhaps “end” is not the correct word
because I believe that with every copy of this book that is read his story
continues to unfold and his example: his compassion, empathy and kindness,
continues to help others reach people with serious mental illness and bring them
back to their families and communities.
 Part IV
Theory, Research and Practical
Advice on LEAP
 16
LEAP Theory and Research
The first edition of this book described LEAP in 2000. However, LEAP draws
from preexisting psychotherapeutic traditions that date back 50 years.LEAP has
three major influences: Carl Rogers Client-Centered Therapy, Aaron T. Beck’s
Cognitive Therapy and Miller and Rollnick’s Motivational Interviewing.

Carl Rogers Client-Centered Therapy (1951, 1959)

LEAP is partly based on Rogers’s conception of the transformative power of
“actively listening” to patients:
“Real communication occurs…when we listen with understanding. What
does this mean? It means to see the expressed idea and attitude from the other
person’s point of view, to sense how it feels to him, to achieve his frame of
reference in regard to the thing he is talking about.” (Carl Rogers, 1961; On
Becoming a Person, Mariner Books, page 332)
The main idea is that judgment or evaluation is a barrier to constructive
communication. The better you listen the less you judge. When the patient feels
understood, he feels trust and openness to the therapist.
Among the main lessons I learned from Client-Centered Therapy was that I
should give up the directive-expert perspective, communicate respect for the
client’s views, listen actively and show empathy.

Aaron Beck’s cognitive therapy (1979)

In 1979, Aaron T. Beck, in his book Cognitive Therapy of Depression
highlights that specific dysfunctional cognitive patterns lead to, or sustain,
mental disorders. However, to listen is not enough in order to modify these
specific dysfunctional cognitive patterns (called schema). Cognitive therapy
offers many techniques that are helpful to improve a patient’s engagement into
the interaction and ultimately treatment. Thus, when working on the issue of
adherence to treatment the therapist should:
Take a collaborative stance
Use mutually agreed on agendas
Explore disadvantages and advantages of medication and services
Define goals that the patient is willing to work on

Among the many lessons I learned from Cognitive Therapy that were
incorporated into LEAP was the importance of creating structure when possible
such as beginning meetings with setting an agenda—but staying flexible.
Attempt to create an agenda for conversations either by following the patient’s
lead (e.g., “You were just talking about how angry you are that the police picked
you up, can we talk about that today?) or introducing ideas (e.g., “You
mentioned not liking medication, can we talk about that?). Remember to ask
questions. This LEAP rule came from cognitive therapy. Cognitive therapy is
very collaborative as is LEAP and the therapist frequently “checks in” with the
patient to find out what is perceived as helpful and what is not. Importantly,
cognitive therapy also relies on conducting cost/benefit analysis with the client
—just as we do in LEAP—whenever possible.

Motivational Interviewing (1991)

“Motivational Interviewing, or Motivational Enhancement Therapy (MET) is
an approach to helping people change that was originally developed by William
R. Miller and Stephen Rollnick. It directly addresses a significant problem
common to all therapies: resistance to change. In MET, resistance is seen as a
result of ambivalence about change. Its primary goals are to help clients increase
their intrinsic motivation and resolve ambivalence in order to facilitate behavior
change.” Hal Arkowitz et al., (2008) Motivational Interviewing in the treatment
of psychological problems, London: The Guilford Press, Page ix.
In Motivational Interviewing, the therapist is a guide that asks questions,
listens and ultimately informs his patients. As you will see, LEAP was
influenced mainly by these first two components of Motivational Interviewing.
Importantly, LEAP differs from MET in its approach to informing (i.e., giving an
opinion, making recommendations or educating). Like in MI, LEAP’s main
focus is to obtain collaboration from the patient by showing respect for his
autonomy and opinions even when they are at odds with the therapist’s.
The main idea is that the therapist should adopt a guiding style (e.g., use
open ended questions) rather than a controlling or directive one in order to
promote a more active involvement in the interaction. Consequently, the
therapist strives to:
Guide (open questions) rather than press,
Assess motivation for change,
Support client’s self-efficacy,
Assess previous attempts to fix the problem,
Talk in hypothetical language for patients who are less ready to change,
Collaboratively explore ambivalence to motivate the process of behavior
change.

Among the lessons learned from MET is to not direct. LEAP takes this a big
step further in that we encourage you to show genuine reluctance to direct—to
give your opinion. Like MET, LEAP also capitalizes on those aspects of insight
the person has and ignores those that appear deeply ingrained (such as the belief
“I am not sick”). Instead, we focus on the desire to change certain things in the
person’s life, to articulate and strive for goals and to resolve ambivalence about
getting help to achieve those goals.

Summary
In Carl Rogers’ Client-Centered Therapy as well as in Motivational
Interviewing, the process of building an alliance starts by focusing on
understanding the patient’s perspectives and problems. Understanding the
patient’s perspective is central to the LEAP approach.Understanding and
communicating it accurately is considered the key to transforming an adversarial
relationship into an alliance. As opposed to Roger’s Client Centered Therapy as
well as Beck’s Cognitive Therapy, however, MET focuses on listening to/and
working on ambivalence and change talk. Change talk is based on the patient’s
desires, ability, reasons and need for change.
What the patient desires (“what do you want?”)
The patient’s ability (“What can you do?”)
The reasons for change (“Why would you do it? Why would you change?”)
The need for change (“How much do you need to change?”)
In short LEAP utilizes the following tools and principles from the three
therapies:
From Roger’s client-centered therapy: reflective listening as the foundation
for creating an alliance. Central to this technique is a complete lack of judgment
—no opinion about what is being said is given unless it has been asked for
(preferably many times over).
From Cognitive Therapy: The collaborative stance, setting an agenda and
cost benefit analyses.
From MI: The patient remains the final arbiter of the change process.
Ambivalence about change is explored. And perhaps most importantly, internal
and external motivators (or desires) are identified.
I admit it, LEAP is not entirely new; its main principals are familiar and so
sometimes people say “LEAP is just like…” not so much accusing me of
plagiarism as much as recognizing the heritage. The American folk singer
Woody Guthrie, writer of the song “This Land is Your Land,” which we all
learned as children, was sometimes accused of stealing the melodies for his
songs from old gospel tunes. In fact, he had never tried to hide his practice of
borrowing from melodies that had already been written, saying, “There are no
new melodies; they’re all used up!” I feel that way about most useful insights
into human psychology and relations. LEAP is new but, like Guthrie’s songs, it
relies on what came before—from certain philosophical traditions, from the
three therapies I summarized above, and from common sense. It is a method for
easily remembering and using age-old truths in your everyday life. Like a
melody that is catchy and hard to forget, once you learn LEAP you will find that
you can call it up any time you need it.

Recent Research on LEAP

Next, I briefly describe the results of a study my colleagues Celine Paillot,
Ph.D., Raymond Goetz Ph.D., and I published in the National Institute of Mental
Health’s Journal Schizophrenia Bulletin. The study was presented at the
International Congress on Schizophrenia Research in June of 2009. Although Dr.
Goetz and I consulted with her and published the study together, Dr. Paillot
conducted the study herself while pursuing her doctorate degree at the
University of Paris X.
As stated earlier, most patients with DSM-IV diagnosed schizophrenia
exhibit full or partial non-adherence to pharmacological treatment (Rummel-
Kluge, 2008). Only about one-third reliably take antipsychotic medication as
prescribed (Oehl, 2000). Poor adherence (i.e., both complete and partial non
adherence) has been found to be associated with relapse, increased involuntary
admissions, poorer course of illness, and increased incidence of violence and
suicide (Amador and David 2004). Given the serious outcomes associated with
poor adherence interventions aimed at improving and maintaining adherence are
of great interest to clinicians, researchers, and policy makers.
The main aim of our study was to assess the efficacy of LEAP when
compared to a control intervention. The study involved 54 patients diagnosed
with schizophrenia about to be discharged following inpatient treatment. Patients
were randomly assigned to either the experimental or control therapies. Subjects
did not know whether they were receiving the experimental versus control
therapy which was essentially Carl Roger’s Client Centered Therapy as
described above. All patients were treated with long acting injectable
antipsychotic medications (either typical or atypical) and rated as compliant
when the injection was confirmed and non compliant if the injection was refused
or the appointment for the injection was missed. Insight into schizophrenia and
attitudes toward treatment were assessed using the Scale to assess Unawareness
of Mental Disorder, the Birchwood Insight Scale and the Drug Attitude
Inventory, respectively. All assessments were made by a single rater who was
blind to group assignment.
The results show that compared to Roger’s therapy LEAP improved
motivation for change, insight and adherence to treatment. This study found
LEAP to be superior to the control psychotherapy. It improved compliance,
motivation for change, insight and attitudes towards treatment. Among the
strengths of the experimental design was the fact that we used randomized
blinded group assignment, blinded assessments of the dependent variables and
near 100% reliability and validity of the adherence measure. Among the
limitations of the study was the absence of a LEAP fidelity measure and the fact
that the senior author (Dr. Paillot) was the only therapist for all patients and as
such could have inadvertently biased the results by differentially treating patients
depending on which therapy they were assigned to. We are currently planning to
attempt a replication of this study in a larger more heterogeneous sample with a
longitudinal assessment of fidelity to the LEAP intervention and therapists
blinded to study hypotheses.
 17
Psychotherapy for Psychosis?
As I have written in Chapter 1, and previously in a column I write for
Schizophrenia Magazine, 14 about 50% of persons with schizophrenia have great
difficulty seeing that they have a mental illness (i.e., they have the symptom of
anosognosia) and this lack of awareness is linked to frontal lobe dysfunction. As
such it does not change—insight does not increase—easily over time.
The data supporting this statement are so well replicated that ten years ago
the diagnostic manual all North American doctors and mental health
professionals use reported these facts (see page 304 of the DSM-IV-TR,
American Psychiatric Association Press, 2000). In addition, as I wrote earlier,
many persons with schizophrenia and bipolar disorder either refuse, or take only
a small portion of, the medication prescribed (estimates are from 50 to 75%).
And for those persons who understand that they have an illness and take
medication, not all respond to the treatment or respond only partially (e.g., the
voices are diminished but the delusions persist). So if many people refuse
medication, or take only sub-therapeutic doses, and medication does not always
work for those who do take it as prescribed, what can be done?

So if many people refuse medication, or take only sub-

therapeutic doses…what can be done?
Although I pose it as a question in the title of this chapter, I have no doubt
that as a field we need to offer psychotherapy to most, if not all, persons with
psychosis. In this chapter I will highlight some of the research on Cognitive
Behavioral Therapy (CBT) in psychosis. I will also briefly discuss Motivational
Interviewing which I consider a “close cousin” of CBT and argue that strong
support exists for their effectiveness in increasing adherence to medication,
improving some aspects of insight into illness, lowering the severity of some
symptoms, and as importantly, encouraging patients to become active consumers
engaged in trying to find the treatments and resources that help them best.
 Lessons Learned About Psychotherapy in Psychosis
The first lesson I learned was in college, in a classroom in 1978: Long term,
intensive psychoanalysis cures schizophrenia and other forms of “psychotic
denial.” It does not merely reduce the severity of symptoms, it cures the illness
itself! Most often the focus of treatment was to undo the damage done by the
“schizophrenigenic mother” whose style of communicating emotion produced
schizophrenia.
The second lesson I learned was years later from the doctor who first
diagnosed my brother Henry with schizophrenia: The only treatment for
schizophrenia was antipsychotic medication and “supportive therapy.”
Supportive therapy, at the time, appeared to consist of individual meetings and
group therapy aimed at “reality testing” which, to my brother’s ears sounded a
lot like people telling him he was wrong to think the things he did and was
“crazy.”

Why the change from psychoanalysis to drugs and

reality testing?
A 1984 landmark study conducted by Yale psychiatrist Dr. Tom McGlashan
and his colleagues at the Chestnut Lodge, a nationally renowned treatment center
for schizophrenia at the time, showed that psychoanalysis by no means cured
schizophrenia and in most instances offered very little help at all. Then, in the
1990’s, with the National Institute of Mental Health’s (NIMH) announcement of
the “Decade of the Brain” research initiative for schizophrenia, inspired in large
part my family members working with the National Alliance on Mental Illness
together with clinicians and scientists, the pendulum swung the other way.
Psychotherapy was bad and pharamcotherapy, or drugs, were good. Obviously
this is a gross over simplification, but for many of us that was the view.
Although I was trained in psychoanalytic psychotherapy and used it with many
patients, I saw how antipsychotic medicines were lowering and even eliminating
symptoms of schizophrenia in my brother and in others with related psychotic
disorders. I gladly joined the chorus of well intentioned family members, doctors
and researchers who preached that antipsychotic drugs were the key to
stabilization and recovery and that there was little or no room for psychotherapy
which promised more harm than good. In retrospect, we threw the baby out with
the bath water.
 I gladly joined the chorus of well intentioned family
members, doctors and researchers who preached that
antipsychotic drugs were the key to stabilization and
recovery and that there was little or no room for
psychotherapy which promised more harm than good. In
retrospect, we threw the baby out with the bath water.
Fortunately, a small group of researchers in the United Kingdom came to the
attention of Aaron T. Beck, M.D. from the University of Pennsylvania, the father
of cognitive therapy (and my collaborator in the development of an earlier
version of LEAP), and together they began a yearly meeting of scientists
studying cognitive therapy in patients with and other psychotic disorders. In June
of 2009 I attended their 10th anniversary meeting held at the University of
Pennsylvania medical school. Although one of my colleagues and I had written a
review paper some years before concluding that CBT had many positive
applications for persons with schizophrenia and other psychotic disorders, the
conference helped to cement and expand this view. 15 Here are some of the
lessons I have learned from the conference and the research literature.

The Good Thing about Psychotherapy

First the bad news: The consensus from the conference seemed to be that
CBT was not particularly effective in treating negative symptoms. Also, in the
USA it is very rarely offered compared to the United Kingdom where it is far
more commonplace. The good news is that research conducted since our last
review of the literature in 2001 indicates that CBT is effective in treating some
positive symptoms of schizophrenia and other psychotic disorders (so called
positive symptoms include hallucinations, delusions and thought disorder).
Hallucinations, in particular, appear to be helped with CBT.
In our review of the literature in 2001, Dr. Anna Seckinger and I found that
poor insight and nonadherence to medication were common and problematic
areas that present major stumbling blocks in the treatment of patients suffering
from schizophrenia and other psychotic disorders and that CBT and
interventions derived from such approaches, like Motivational Interviewing,
improve some aspects of insight into illness, increase adherence to medication,
ameliorate the severity of hallucinations and sometimes delusions, and help with
other negative consequences of and related psychotic disorders. The papers
presented this year at the 10th Anniversary Conference on CBT in Schizophrenia
reaffirmed the main findings of our earlier review.
Also, in a study published this year in the British Journal of Psychiatry the
authors found that compared to a control therapy, CBT was superior at reducing
incidents of aggression–in patients with a history of aggression and violence—
and was superior at reducing delusion severity and decreasing risk management.
Furthermore, the treatment was acceptable to the majority of individuals; drop
out rates from CBT therapy were much lower.
Finally, a review of twenty years of psychosocial research aimed at
improving medication adherence, published in the American Journal of
Psychiatry in 2002 (http://leapinstitute. org/RESEARCH.html and click on
“Review Paper”) found that only those programs that included elements of
Motivational Interviewing were effective in helping motivate persons with
schizophrenia to accept treatment and stick with it.

Why Psychotherapy Is Rarely Offered

Despite all the evidence–and even more data for the effectiveness of CBT for
treating other disorders common in schizophrenia and related psychotic
disorders like mood and anxiety disorders–the overwhelming majority of
persons with schizophrenia and related psychotic disorders in North America
have never been offered a course of treatment with CBT or related therapies
(e.g., LEAP).
I think this is for two reasons. First, there is no schizophrenigenic mother.
Unfortunately most clinicians still feel guilt for believing, or being part of a field
that once preached that bad parenting caused schizophrenia. To them I say: “Get
over it, none of us meant to do any harm, we were simply ignorant and stuck in a
particular theory that had never been tested.” Second, schizophrenia and related
psychotic disorders is indeed a brain disorder.

Consumers, relatives, mental health professionals and

policymakers tend to focus first and foremost on the
brain, all the while forgetting where the brain resides—in
a human being.
 The research conducted during the “Decade of the Brain” and after revealed
that fact unequivocally. Consequently consumers, relatives, mental health
professionals and policymakers tend to focus first and foremost on the brain, all
the while forgetting where the brain resides—in a human being. Meanwhile, we
have never had a multibillion dollar industry promoting consumer and
professional education about psychotherapy for schizophrenia and related
psychotic disorders. But we have had such deep pockets educating us about the
benefits of antipsychotic medicines. This is not a criticism–it is a simple
incontrovertible truth.
So it is up to us to become educated about psychotherapies that have been
studied and shown to be effective, and up to us to see that both private and
public funds are directed toward training the professionals needed to deliver
these therapies and make them available in our communities. 16 I don’t find this
task daunting or impossible because I have already seen much progress made
since I opened my first book about schizophrenia and since my brother’s first
episode of illness.
 18
Violence and Mental Illness
I woke up searching frantically for my glasses on the night stand-knocking over
a glass of water before touching the wire rims. Pulling them on, I saw it was 4
a.m. I was in a cold sweat and my heart was pounding. I could hear Henry
pacing in the hallway shouting at the voices only he could hear. The thought to
talk with him never entered my mind—I had been up late trying to convince my
brother he needed to go back on the medicine, but all I accomplished was to
further agitate him. Listening to his side of the heated argument, I started
imagining him bursting through the door with a knife in his hand. I couldn’t go
back to sleep. I swung my legs over the bed and walked to the door with my
head hung low in shame and weariness; I locked it.
My research and this book are frequently cited by advocates who promote
assisted outpatient treatment (see www.psychlaws.org) and by advocates who
oppose involuntary treatments on the grounds they would not be needed if
adequate outpatient treatments such as LEAP were available. I can see the
wisdom in both sides of the debate. That said, until suicide, gross self-neglect,
other forms of self-harm and violence stemming from psychotic states can be
reliably controlled, involuntary treatments will always be needed. To turn our
heads and look the other way would be immoral and criminal.
Which brings me to the focus of this chapter: Are people with schizophrenia
more apt to commit violent crimes and acts compared to “the chronically
normal.” as my good friend Dr. Fred Freese (a consumer and psychologist with
schizophrenia) would say? On a more personal note: Should I have been afraid
of my brother who, before he became ill, I trusted more than anyone?

Research on violence and schizophrenia

When giving seminars I often say “Individuals with schizophrenia and
related psychotic disorders are no more violent than the general population” and
then go on to cite the research that backs me up. For nearly two decades this
statement has been a mantra for many of us who are advocates for better
treatments, services, and laws for persons with schizophrenia. But more recent,
well replicated, research indicates the story is not so simple.
For example, in a recent national study of violent behavior in persons with
schizophrenia the authors found that symptoms of losing contact with reality,
such as delusions and hallucinations increased the odds of serious violence by
nearly three times the normal rate. Results of the study, which was conducted on
patients in real-world community settings as part of the NIMH-funded Clinical
Antipsychotic Trials of Intervention Effectiveness (CATIE), are consistent with
previous independent studies. Most studies show that when hallucinations and
delusions are worsened. the potential for violence increases dramatically.
As a forensic expert who has worked on more than 30 death-penalty cases
involving persons with schizophrenia and related disorders that have committed
homicides, I can say unequivocally that the anecdotal evidence is overwhelming.
The story was the same in nearly every case I worked on. When hal1ucinations,
thought disorder, and delusions worsened, the defendants became frightened and
angry and, in some cases, coolly planned how they would commit murder. More
often than not we are talking about people who became paranoid and/or
grandiose, people who, for example, felt convinced they had to defend
themselves from their relatives who had become possessed by evil spirits, or
accomplish some other delusion-based imperative such as saving the earth from
alien invasion by killing a radio talk show host who was broadcasting the beacon
the aliens were using to coordinate their attack.

Impaired insight causes medication nonadherence

which increases the risk of violence
Most persons with schizophrenia and other psychotic disorders including
bipolar disorder, benefit from treatment with antipsychotic medication. When we
look at the majority—those who do respond to treatment—we find that the most
common cause of medication refusal and partial nonadherence is poor insight.
Consequently, if we want to decrease the rate of violence in the population of
persons with schizophrenia and other psychotic disorders we have to break the
cycle caused by poor insight: Believing “I am not sick” leads to the conclusion,
“I don’t need medicine” which, in turn, leads to a worsening of those symptoms
that cause otherwise-peace-loving people with no history of aggression or
violence to become violent.

The CATIE study found that participants living with

families “they felt listened to them ‘most of the time’ had
half the rate of violence compared to those living with
families that did not listen to them.”
How do we break that cycle? Part of the answer lies in the same nationwide
study that recently emphasized the well replicated link between a worsening in
psychotic symptoms and violence. The CATIE study found that participants
living with families “they felt listened to them ‘most of the time’ had half the
rate of violence compared to those living with families that did not listen to
them.” If we needed only one reason to try the LEAP Reflective Listening Tool,
this would be it.
If they had measured it, I believe the CATlE investigators would have found
the same result: less violence in persons working with therapists who listened
“most of the time” instead of offering unsolicited advice and debating whether or
not their clients were ill. The reason I believe this is because our own research,
and that of others, shows that communication strategies that emphasize active
listening skills-whether used by therapists, friends, or family, create trusting
relationships that lead people to accept treatment even when they do not believe
they are ill.
Twenty-five years ago when I was woken from sleep by my brother’s rant al
his hallucinations, should I have locked the door? In light of the recent research
and the professional experiences I have had since that night, I have to say the
answer is yes. Although he was never violent, he was nevertheless exhibiting
some of the warning signs (increased hallucinations, agitation, and paranoid
delusions). At that time, before much of the research on which LEAP is based
and the impact of long-acting injectable medications on adherence was
completed (see chapter on Treatment above), my only reasonable course of
action was to call the police whenever he posed a clear danger to himself and
refused treatment. But today when faced with someone who has poor insight into
being ill, I often turn first to LEAP and to long-acting injectable medications, to
help insure that persons with schizophrenia and related disorders do not
experience a worsening of those symptoms that can lead to violence.
Today, when asked “Are people with schizophrenia more violent?” I now
answer “No. Not when they are in treatment and the symptoms are well
controlled.”
 19
DSM-V and Anosognosia
The Diagnostic and Statistical Manual for Mental Disorders, 5th Edition (DSM-
V) is in the works and will likely be published about 2012. Over the last twenty
years I worked on the last two editions as a Schizophrenia Expert, Columbia
University Field Trial Coordinator, a couple of other roles and most recently as
the co-chair of the Schizophrenia and Related Disorders section. My co-chair,
Michael Flaum, MD, and I were asked by the American Psychiatric Association
(APA) to revise the text to insure that it was based on scientific consensus rather
than on the views of a single expert.
To accomplish this we brought together experts from around the United
States and overseas to read the research and independently review the text we
proposed so that it would accurately reflect the scientific evidence available at
the time. After our text revision (TR) and peer review process, the text was
independently reviewed again by experts on the APA Task Force for the DSM-V-
TR.
At that time (10 years ago), our peer-reviewers and the APA Task Force
agreed that “a majority of individuals with schizophrenia lacked insight into
having a psychotic illness” and that this problem was “a manifestation of the
illness itself rather than a coping strategy” (page 304, DSM-IV-TR, APA Press,
2000). It was a symptom of the brain disorder rather than denial. It was
compared to anosognosia-an unawareness syndrome seen in stroke patients and
others with frontal lobe lesions.
I realize I have quoted this passage from the latest DSM several times in this
th
10 Anniversary edition of I am Not Sick, I Don’t Need Help! The reason is that
after ten years most psychiatrists and other mental health professionals continue
to feel certain that what they are dealing with—when a patient says “I am not
sick”over a period of months, years and decades—is denial. They have never
read the passage or if they have, they have not read the underlying research.
They hold on to the belief that the poor insight they see is denial rather than a
symptom of the disorder, rather than brain dysfunction. So please forgive me for
being redundant.
I speak frequently all over the United States and overseas and for the past ten
years I have been asking my audiences if they have heard of anosognosia and
whether they believe this unawareness syndrome exists in schizophrenia and
related disorders (e.g. schizoaffective disorder and other psychotic illnesses). In
the early years, only one or two hands went up on groups of two hundred or
more. Today, between one-half to two-thirds of my audiences raise their hands
whether in Australia, New Zealand, France, Belgium, Hawaii, Hungary, Spain or
Ohio (and nearly every other U.S. State).
However, many mental health professionals and family members still have
trouble believing it. For this reason-because of the continuing gap between
science and practice-I will briefly review the research that has convinced me and
most other experts on schizophrenia that when a patient (who has received a
reliable diagnosis) with this disorder persists for years in saying “I am not sick, I
don’t need help!” he is giving voice to a symptom of the illness (similar to a
delusion) rather than to denial.

Studies using neuropsychological tests

Numerous studies consistently report that low performance on the Wisconsin
Card Sorting Test (WCST) is significantly correlated with insight deficits in
patients with schizophrenia (e.g. Shad et. aI., 2006; see also the relevant review
chapter in Amador and David, Insight and Psychosis, edited volume, Oxford
University Press, 2004). The WCST measures, among other things, executive
functions (anterior cortical function, a.k.a. frontal lobe function) such as self-
reflection, planning, rule acquisition, abstract thinking initiating appropriate
actions while inhibiting inappropriate actions. Frontal lobe lesions have been
found to be a common cause of anosognosia in neurological disorders (see
reviews in: Amador et. al., Schizophrenia Bulletin, 1991 and in Amador, X. I am
Not Sick, I Don’t Need Help! (Vida Press, 2007).

Structural brain imaging studies

Although far fewer in number, studies of the neurobiological underpinnings
of poor insight in schizophrenia generally find that anosognosia in schizophrenia
is correlated with a range of frontal lobe abnormalities (see: Alexander and
Struss, 2006; see also the relevant review chapter in: Amador and David, Insight
and Psychosis, edited volume, Oxford University Press, 2004).
Additional structural and functional brain imaging studies and post-mortem
brain studies are currently underway and should help to shed light on the
pathophysiology of this common symptom of schizophrenia.

How research should influence the DSM-V

Psychiatric diagnoses are purely descriptive. To date, there is no blood test or
brain scan that can diagnose mental illness. We look instead for diagnostic
categories and dimensions that tell us something about what is likely to happen
to the person (i.e. we ask, “What is the predictive value or validity of the
diagnostic category or subtype?”). This also helps us to choose and recommend
treatments and services that will be helpful to the individual. The current
subtypes of schizophrenia (e.g. catatonic, undifferentiated, disorganized, etc.)
have limited predictive value. For that reason—and because the extensive
research on poor insight in schizophrenia indicates that patients with this
symptom have a poorer course of illness, are more prone to violence,
homelessness, and poor adherence to treatments—the time to use the level of
“awareness of illness” as a subtype and/or dimension in the DSM is long
overdue. This is especially true when we look at the research on motivational
enhancement therapy (MET), or Motivational Interviewing, and cognitive
behavioral therapy (CBT) which, along with long-acting injectable medications,
are clearly the treatments of choice for such individuals. When a psychiatrist or
other mental health professional meets someone with schizophrenia and does the
initial evaluation, the question of whether the individual is like half of all
persons with schizophrenia and related disorders who do not understand they are
ill and, as a consequence, refuse treatment and services, should always be asked.

The first step after making a diagnosis is to… and

identify whether the person…has anosognosia. Once we
do that, we can then choose a different path toward
stabilization and recovery-one that employs science-
proven communication skills and medications designed to
help persons with poor insight and poor adherence to
treatment.
Such patients fight with well-meaning clinicians and family members who
are trying to engage them in the interventions that can give them a chance at
recovery. They (understandably, because they are certain nothing is wrong with
them) toss out prescriptions, appointment cards, and advice regarding their
disorder and treatments. We know how to engage such persons in treatment—the
science exists. The first step after making a diagnosis is to do a careful
assessment of insight into illness and identify whether the person being
evaluated has anosognosia. Once we do that, we can then choose a different path
toward stabilization and recovery-one that employs science-proven
communication skills and medications designed to help persons with poor
insight and poor adherence to treatment.
 20
Henry
On April 23, 2007, while helping a woman put her groceries on a bus, my
brother Henry was hit by a car while standing on a sidewalk and died at the
scene. He had stepped off the bus and back on to the sidewalk to help the woman
he saw was struggling with her groceries. There’s actually a videotape, taken by
the bus company, of what he did though I don’t yet have the strength to watch it.
That was so like him. Although often lost in delusional thoughts and distracted
by hallucinations, he was aware of people around him, especially those in need,
and cared.
That was not what he or I had planned for. When I first wrote about this, only
two months after his death, I was much too close to my loss and mourning to
know what good could possibly come from this, I trusted that someday
something would.

Saying Goodbye Twice

Standing at the lectern looking out at the people who had come to Henry’s
funeral, I was struck once again by what a full life he had. His friends filled the
church, prompting several of my family members—who had very little contact
with Henry after he became ill 25 years before—to say things like “I had no idea
he had this many friends!” and “I never knew his life was so full.”
As they met and spoke to more and more of his friends over the course of
that day and the next, some in my family expressed deep remorse and sadness
that they had missed out on so much of his life. I didn’t feel that sadness because
I had not missed out. My brother and I were very close and loved each other’s
company immensely.
He was my hero.
The reason I had this relationship with Henry while others in our family did
not is not because I am a better person; I am no saint. The reason is that after he
first became ill. I was somehow able to mourn who he had been before, while
most of my brothers and sisters (there are nine of us) seemed unable to. At first, I
know we all felt it…it was impossible to accept that he was no longer there in
the way he had been and that could never become the man we all had envisioned
he would be: a loving husband and father, a responsible care giver and successful
man.
He was handsome, kind, and loving. He had a magical sense of humor.
When he became ill with schizophrenia we all longed for the “old Henry”
and made little room in our hearts for the “new Henry.”
He had the same problem.
For the first five years of his illness he, like us, was stuck on the plan he had
had for the future, and he became depressed that what he had planned for mow
seemed impossible to attain. Prior to becoming ill he had always worked, gone
to university and had girlfriends. That was over now. Not until he had mourned
his old vision for the future did he discover that the core of the old Henry was
still there. He realized that new plans needed to be made.
The last year of his life he was especially happy. This is not some wishful
revisionist delusion on my part—it is confirmed by all that were close to him. He
had many friends; he worked odd jobs with his friend “Pops,” and his girlfriend
Mary had become a big part of his life.

Mourning when mental illness strikes

The research is clear on the importance of mourning. By mourning what has
been lost, you open your eyes to all that is still there. Moreover, you open your
eyes and heart to new possibilities.
In a review of the research on literature we published in the spring of 2007 in
the Annals of General Psychiatry, my colleagues and I found that people with
schizophrenia who had successfully mourned were less likely to feel suicidal.
Studies of family members of people with schizophrenia have found that those
relatives that who have mourned the loss of the way things used to be are less
likely to be critical of their mentally ill loved ones, and feel less burdened and
stressed.
Some research findings are intuitive; they just make sense. This is one of
those instances. I’ve seen the same transformation in my brother and I
experienced the improvement in his hopefulness about his future and our
relationship. I’ve seen this repeated time and again in patients and families I
have worked with this last 25 years.

Closing one door opens another

 It is like any other major change in life. When you mourn, you feel sad
because you are saying goodbye to what was and what you hoped would be. But
by doing this, you feel at peace and even happy as you say hello to what is and
what can be. I have counseled many families and also consumers on the
importance of going through this process. Families that successfully mourn are
able to let go of their anger at their loved ones. They have learned to separate the
illness from the person. Communication gets healthier, and even the course of
illness can improve because of the lessened tensions between family members.
But I never before experienced the stark truth of this wisdom so completely as I
did when my brother died. Now that he is gone, I find I have no regrets. I cherish
countless good memories I have of him. I recall our many conversations and
how often he would ramble and it would be hard for me to listen, but he would
always end by saying. “You’re my baby brother, I love you.” I remember our
nearly constant laughter together, his helping me build an outdoor fireplace in
my home which crackled with flame and heat for my family earlier this evening,
his giving me permission to write about him, the pride he felt in me and I in him
and so much more.
After Henry became ill, many things changed. But not the fact that he was
still smart, handsome, kind, and loving. And he could make me laugh in any
situation—I am talking about the splitting-your-gut kind of laughter, even at our
mother’s funeral! But usually with kindness and reverence for the feelings of
other people—except for those rare instances later in life when the illness got the
best of him. Because he felt less inhibited, he was far funnier than he was prior
to becoming ill and he knew it.
Many people have written to me to offer their condolences, to share their
good memories of Henry, and to wisely say how lucky I was to have him as my
older brother. They are right. But they left out one vital thing, a lesson I learned
anew as I reflect on the seemingly insurmountable task of saying goodbye to him
all over again: I was especially fortunate that I was able to mourn after he first
became ill—to say goodbye to what I had hoped for-so that these past 25 years I
could laugh with him, make new good memories together, and realize just how
lucky I was to be his “baby brother.” He worked with me to get well and our
relationship was a good one. He helped many people through his example,
influence on my thinking and willingness to let his story be told in my books and
articles. We will never know how many lives he saved and how many people
with poor insight he helped to recover. I have received many letters from kind
souls telling me he had that impact. I am sure there are many more who have not
written.
I have much to be grateful for.
 Notes
1. Many states now have outpatient commitment laws. In select cases these laws
allow family members and clinicians to seek a court order to medicate the
mentally ill person against their will without requiring hospitalization.

2. Many mental disorders can be very serious (e.g., depression, anxiety,

personality disorders and others). However, for the sake of brevity, I will use the
term “serious mental illnesses” to refer specifically to psychotic illnesses
including schizophrenia, schizoaffective disorder, bipolar disorder, and others.

3. Since this book is written for both lay and professional readers who are trying
to help someone with a serious mental illness, there are many terms I could use
to refer to the person being helped (e.g., patient, consumer, family member,
loved one, etc.). To avoid cumbersome language I will mostly use the terms
“loved one,” “family member,” or “relative,” from this point forward. Readers
who are mental health care providers should substitute “patient,” “client,” or
“consumer” (whatever the preference), for the familial reference.

4. I believe Matt is referring to the involuntary treatment law in New York at the
time which required two physicians to certify (2 PC) that the person is a danger
to himself or others as a result of a mental illness and requires hospitalization
and evaluation.

5. Many people refer to psychotic episodes as “nervous breakdowns,” but the

term nervous breakdown is also sometimes used to indicate conditions other than
psychosis. An episode of psychosis specifically involves hallucinations,
delusions, and/or extremely disorganized thoughts and behavior.

6. A feature of thought disorder, a frequent symptom of psychosis, that involves

word associations based on rhyme.

7. A cornerstone of psychiatric assessment, the mental status exam involves an

assessment of the clarity of consciousness, memory, attention, emotion, thought
process,insight into illness, and various symptoms of mental illness.

8. Often, people simply forget to take their medicine. Medication adherence rates
in other medical illnesses range from 15 to 50%.

9. Long-acting injectable Prolixin (generic name: Fluphenazine Decanoate), is

one of three such antipsychotic medicines, all of which last approximately two
weeks per injection. The other two are Haldol and Risperdal CONSTA. Haldol
and Prolixin are among the older, 1st generation antipsychotic medications and
Risperdal is one of the newer, 2nd generation, antipsychotic medications, also
called “atypical antipsychotics”. Risperdal CONSTA has also been approved by
the Federal Drug Administration (FDA) for the treatment of bipolar disorder.
One other 2nd generation drug, olanzapine, is likely to be approved by the FDA
for use in the United States in the near future.

10. New formulations of 2nd generation LAI’s have been developed that need to
begiven only once a month.

11. Lasser R, Gharabawi GM, Jarboe K, Litrell K, Miller AL, M.D., Amador XF,
WeidenPJ, Schooler NR, Docherty JP, and Crumbley E. (2005). Patient
Acceptance and Long-Acting Risperidone: the Start Program and Gain
Approach. Presentation at the annual meeting of the American Psychiatric
Association.

12. Pallanti S, Quercioli L, Pazzagli A (1999), Effects of clozapine on awareness

of illness and cognition in schizophrenia. Psychiatry Res 86(3):239-249.
Gharabawi GM, Lasser RA, Bossie CA, Zhu Y, Ballenger JC and Amador XFA.
Insight and Its Relationship to Clinical Outcomes in Patients with Schizophrenia
or Schizoaffective Disorder Receiving Long-acting Risperidone. Journal of
InternationalClinical Psychopharmacology. (in press)

13. CIT is another fast growing innovative and effective approach to helping
persons with mental illness. For more information please see:
www.citinternational.org
and also
www.nami.org

14. Portions of this chapter and some of the chapters to follow appeared, in part,
in the column I write for Schizophrenia Magazine, published by Magpie
Publishing, www.szmagazine.com. The publisher has kindly given me
permission to reproduce excerpts from this work here. Schizophrenia Magazine
is an informative, inspiring and novel resource for consumers, their families and
clinicians. I highly recommend it to you and not just because I write a column
for them! In fact, the only reason I write the column is because of my high
opinion of this magazine. I also volunteer my time to serve on their Editorial
Board and wouldn’t do so if I did not think my time spent was well worth the
effort.

15. Seckinger, RA, Amador, XF. “Cognitive-behavioral therapy in

schizophrenia.”Journal of Psychiatric Practice, 2001.

16. For more information on CBT for persons with schizophrenia and related
psychoticdisorders see:
www.BeckInstitute.org and www.LEAPInstitute.org.
 Acknowledgments
I am grateful, first and foremost to my wife and daughter, Céline and Lou-
Andréa. Thank you for your love, patience and sacrifice while I revised this
book. Thank you most for making me laugh even when I was “grumpy man” and
for making me feel like the luckiest man on earth. Thanks for “Papi’s the man”
and for insisting I not shave. I love you both more than you can know.
My thanks also to Bob and Jason for your support and help while writing this
book and with our other work together. Thanks to Dr. Dave Schaich for pitching
in and giving LEAP seminars when I could not.
Since the publication of the first edition of this book I have given lectures to
tens of thousands of family members, mental health professionals, consumers,
attorneys and judges the U.S., Canada, and overseas. The response to the
message and lessons in this book has been truly overwhelming. With each
invitation to speak and every e-mail and phone call I receive, I am reminded
again that I am bound to my readers by much more than a book. The shared
experiences, words of appreciation, and lessons I have learned from these
contacts have been invaluable and inspired me to write this 10thanniversary
edition.
Once again, I especially want to thank the many people with mental illness
who have opened up to me over the past twenty-five years and taught me about
their experience. Thanks also to the students I have supervised. Without their
enthusiasm for understanding the people whose care they were entrusted with, I
would never have had to translate research findings into practical advice they
could use in their clinical work.
Many organizations have supported the research described in this book. I
want to thank them for their support and for their commitment to research on
serious mental illness. My thanks to the National Alliance for Research on
Schizophrenia and Affective Disorders (NARSAD), the Stanley Research
Foundation, the Scottish Rite Foundation, the National Institute of Mental Health
(NIMH), and the National Alliance on Mental Illness (NAMI).
And once again, muchos gracias a mi hermano. Thank you for letting me tell
our story and for being the kindest and most supportive older brother a person
could ask for. Your perseverance and sense of humor set a standard I continue to
strive to meet. I miss you despite feeling your presence every day.
Xavier Amador, October 6, 2009 (Henry’s birthday)
 NB: Mercí, Daniel, for your blunt honesty and editorial advice. I think the
acknowledgments would now meet with your approval.
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Durability of the effects of cognitive-behavioural therapy in the treatment of
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 Recommended Books
Surviving Schizophrenia (fourth Edition) by E. Fuller Torrey. HarperCollins,
2001
Crazy. A Father’s Search through America’s Mental Health Madness. Putnam,
2006
Insight and Psychosis. Awareness of Illness in Schizophrenia and Related
Disorders. Amador XF & David AS (Eds.) Oxford University Press, 2005
Cognitive-Behavioral Therapy of Schizophrenia by David G. Kingdon and
Douglas Turkington. The Guilford Press, 1993
When Someone You Love is Depressed. How to Help without losing yourself.
Laura Epstein and Xavier Amador. Fireside, 1998
The Day the Voices Stopped. A Memoir of Madness and Hope. Ken Steele and
Claire Berman. Basic Books, 2001
 Recommended Resources
Advocacy & Professional Organizations

National Alliance on Mental Illness (NAMI)

www.NAMI.org
Colonial Place Three
2107 Wilson Blvd., Suite 300
Arlington, VA 22201-3042
Main: (703) 524-7600
Fax: (703) 524-9094
Member Services: (800) 950-NAMI
In my experience, NAMI is probably the best source for support and information
about serious mental illness. It was founded in 1979 by families of mentally ill
people who were frustrated by the lack of services, treatment, research, and
education available for mentally ill people and their relatives. It has become an
influential and important advocacy group with local chapters in almost every
major city as well as many smaller towns. Many chapters offer free “Family-to-
Family,” “In Our Own Voices” and, “Peer-to-Peer” programs that I highly
recommend. Some chapters have hotlines you can call during a crisis or just to
get information about services in your area. NAMI also offers excellent books
and pamphlets about mental illness.

The National Mental Health Association (NMHA)

www.NMHA.org
National Mental Health Association
2001 N. Beauregard Street, 12th Floor
Alexandria, Virginia 22311
Main : (703) 684-7722
Toll-free: (800) 969-NMHA (6642)
The National Mental Health Association is another effective nonprofit
organization that addresses many aspects of mental health and mental illness.
With more than 340 affiliates nationwide, NMHA works to improve the mental
health of all Americans, especially the 54 million people with mental disorders,
through advocacy, education, research, and service.

National Alliance for Research on Schizophrenia and Depression

(NARSAD)
www.NARSAD.org
60 Cutter Mill Road
Suite 404
Great Neck, NY 11021
Tel: 516-829-0091 and 800-829-8292
NARSAD, also a nonprofit organization, was established to raise money for
research into affective disorders and schizophrenia. It has been immensely
successful in funding promising new scientists and supporting the research of
more senior investigators. NARSAD-supported scientists have conducted many
landmark studies over the past decade. NARSAD raises more money yearly for
psychiatric research than any other organization of its kind. Its free newsletter is
a wonderful source of up-to-date information on new research.

Depression and Bipolar Support Alliance (DBSA)

www.dbsalliance.org
730 North Franklin Street
Suite 501
Chicago, IL 60610
Phone: (800) 826-3632
The DBSA consists of people with clinical depression and their families who try
to educate the public about depression and manic-depression and help others
find treatment. The central branch responds to requests for referrals in other
areas of the country and can refer you to local qualified mental health
professionals. If you contact them, you should also consider inquiring about their
quarterly newsletter, which provides up-to-date information and research
findings about depression and manic-depression. The newsletter is free with
membership in the association.

Depression Awareness, Recognition, and Treatment (D/ART)

National Institute of Mental Health,
5600 Fishers Lane
Room 10-85
Rockville, MD
Phone: (800) 421-4211
This organization can give you good general information about depression, its
signs and symptoms, and the latest in treatment options. D/ART publishes some
excellent booklets and brochures about depression that you can request.
American Association of Suicidology
2459 South Ash
Denver, CO 80222
Phone: (303) 692-0985
This organization offers a variety of printed suicide prevention materials,
primarily for use in schools and other institutional settings. However, they can
also refer you to suicide hotlines and support groups in your area.

American Psychological Association

750 1st Street, N.E., Washington, D.C. 20002
Phone: (202) 336-5500

American Psychiatric Association

1400 K Street, N.W., Washington, D.C. 20005
Phone: (202) 682-6066
These last two organizations are the national associations of the professions of
psychology and psychiatry, respectively. If you contact them, they can send you
information about serious mental illnesses and their treatment, as well as refer
you their qualified members in your area. The American Psychological
Association also publishes fact sheets (Facts About Manic Depression, Facts
About Schizophrenia, etc.) that are very informative.

Informative Websites
Treatment Advocacy Center
www.psychlaws.org

The National Institute on Mental Health

www.NIMH.org

www.Schizophrenia.com
www.reintegration.com
www.schizophreniadigest.com
www.bipolarmagazine.com
www.bipolar.com
 LEAP
Quick Start Guide

LISTEN
Reflectively
to:
Delusions
Anosognosia
Desires
Repeat back what you’ve heard without comment, defensiveness or
contradiction. We resist reflecting back many important things our patients
tell us because:
We fear it will make it worse (i.e., delusions, insight, attitudes, medication,
etc.)
We do not want to be asked to do something we cannot.
We worry about injuring the therapeutic alliance.

Delay giving your opinion:

“I promise I will answer your question. If it’s alright with you, I would like to
first hear more about _______. Okay?”
“I will tell you what I think. I would like to keep listening to your views on this
because I am learning a lot I didn’t know. Can I tell you later what I think?”
“I will tell you. But I believe your opinion is more important than mine and I
would like to learn more before I tell you my opinion. Would that be okay?”
When you finally give your opinion, use the 3 A’s:
APOLOGIZE: “I want to apologize because my views might feel hurtful or
disappointing.”
ACKNOWLEDGE FALLIBILITY: “Also, I could be wrong. I don’t know
everything.”
AGREE: “I hope that we can just agree to disagree. I respect your point of view
and I hope you can respect mine.”
 EMPATHIZE
STRATEGICALLY
express empathy for:
Delusional beliefs
His desire to prove he is not sick
His wish to avoid treatment

Normalize the experience.

 AGREE
Discuss only perceived, problems/symptoms
Review advantages and disadvantages of treatment
Reflect back and highlight the perceived benefits

Agree to disagree.
 PARTNER
Move forward on goals you both agree can be worked on together
 About the Author
Dr. Amador is an internationally sought-after speaker, clinical psychologist,
professor at Columbia University, Teachers College, in New York City, the
Director of the LEAP Institute and author of eight books.
In 2010, Dr. Amador and his LEAP program are featured in the PBS’s NOVA
series This Emotional Life. Dr. Amador’s expertise has made him a regular
contributor to the Today Show and a featured guest on ABC’s Good Morning
America, Prime Time Live, CBS This Morning, NBC Nightly News, 60
Minutes, CNN, Dateline, ABC’s World News Tonight, Fox News, The New
York Times, The Wall Street Journal, USA Today and many others.
Dr. Amador has been a consultant to numerous companies and government
agencies including the National Institute of Health.
His forensic cases include: the Unabomber, PFC Lynndie England, the
Elizabeth Smart Kidnapping, and the Zacarias Moussaoui and accused 9/11 co-
conspirator Ramsi bin al Shibh trials. Dr. Amador has over 25 years experience
working with adults, families, and couples. He lives in New York.
Previously, Dr. Amador was a professor in the Department of Psychiatry at
Columbia University, College of Physicians & Surgeons; on the Board of
Directors of the National Alliance for the Mentally Ill (NAMI); Director of
Research at NAMI; and the Director of Psychology at the New York State
Psychiatric Institute.
Dr. Amador has published over 100 peer-reviewed scientific papers, and
many other publications that have been translated into more than 20 languages.
Dr. Amador was co-chair of the last text revision of the Schizophrenia and
related disorders section of the DSM IV-TR (often referred to as the
“Psychiatrists’ Bible”).
LEAP (Listen-Empathize-Agree-Partner) shows clinicians, family members,
and law enforcement professionals how to quickly gain the trust of someone
who is angry or paranoid. It gives you the tools you need to persuade
someone in “denial” about mental illness to accept treatment and/or
voluntarily comply with your requests. It grew out of Dr. Xavier Amador’s:

Successful struggle to convince his brother Henry, who was diagnosed with
schizophrenia, to take the medications prescribed for him.
Twenty-five years of hands-on clinical experience with patients who lacked
insight.
Experience gained from hundreds of LEAP seminars involving tons of
thousands of clinicians, family members, and law enforcement.
Twenty-five years of clinical research supported by the NIMH, Stanley
Research Foundation, American Psychiatric Association and NARSAD.

Since the book I Am Not Sick, I Don’t Need Help! was published, thousands
have learned LEAP from the author and LEAP Institute faculty worldwide.

For more information, please visit:

www.LEAPInstitute.org