Advance care planning in Parkinson's disease: ethical challenges and future directions

Leonard L Sokol; Michael J Young; Jack Paparian; Benzi M Kluger; Hillary D Lum; Jessica Besbris; Neha M Kramer; Anthony E Lang; Alberto J Espay; Ornella M Dubaz; Janis M Miyasaki; Daniel D Matlock; Tanya Simuni; Moran Cerf

doi:10.1038/s41531-019-0098-0

Advance care planning in Parkinson's disease: ethical challenges and future directions

NPJ Parkinsons Dis. 2019 Nov 22:5:24. doi: 10.1038/s41531-019-0098-0. eCollection 2019.

Authors

Leonard L Sokol^{1

2

3}, Michael J Young⁴, Jack Paparian⁵, Benzi M Kluger⁶, Hillary D Lum⁷, Jessica Besbris⁸, Neha M Kramer⁹, Anthony E Lang¹⁰, Alberto J Espay¹¹, Ornella M Dubaz^{1

12}, Janis M Miyasaki¹³, Daniel D Matlock⁷, Tanya Simuni¹, Moran Cerf^{14

15}

Affiliations

¹ 1The Ken and Ruth Davee Department of Neurology, Northwestern University Feinberg School of Medicine, Chicago, IL USA.
² 2McGaw Bioethics Scholars Program, Center for Bioethics and Humanities, Northwestern University Feinberg School of Medicine, Chicago, IL USA.
³ 3Department of Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL USA.
⁴ Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA USA.
⁵ Independent Researcher, San Francisco, CA USA.
⁶ 6Division of Neuropallaitive Care, Department of Neurology, University of Colorado School of Medicine, Aurora, CO USA.
⁷ 7Eastern Colorado VA Geriatric Research Education and Clinical Center and the Division of Geriatric Medicine, Department of Medicine, University of Colorado School of Medicine, Aurora, CO USA.
⁸ 8Departments of Neurology and Supportive Care Medicine, Cedars-Sinai Medical Center, Los Angeles, CA USA.
⁹ 9Departments of Medicine (Section of Palliative Medicine) and Neurology, Rush University School of Medicine, Chicago, IL USA.
¹⁰ 10The Edmond J. Safra Program in Parkinson's Disease and the Morton and Gloria Shulman Movement Disorders Clinic, University Health Network, University of Toronto, Toronto, ON Canada.
¹¹ 11Gardner Family Center for Parkinson's Disease and Movement Disorders, Department of Neurology, University of Cincinnati College of Medicine, Cincinnati, OH USA.
¹² Department of Neurology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA USA.
¹³ 13Department of Medicine, Division of Neurology, Parkinson and Movement Disorders Program and the Complex Neurologic Symptoms Clinic, Kaye Edmonton Clinic, University of Alberta, Edmonton, AL Canada.
¹⁴ 14Interdepartmental Neuroscience Program, Northwestern University, Evanston, IL USA.
¹⁵ 15Kellogg School of Management, Northwestern University, Evanston, IL USA.

Abstract

Recent discoveries support the principle that palliative care may improve the quality of life of patients with Parkinson's disease and those who care for them. Advance care planning, a component of palliative care, provides a vehicle through which patients, families, and clinicians can collaborate to identify values, goals, and preferences early, as well as throughout the disease trajectory, to facilitate care concordant with patient wishes. While research on this topic is abundant in other life-limiting disorders, particularly in oncology, there is a paucity of data in Parkinson's disease and related neurological disorders. We review and critically evaluate current practices on advance care planning through the analyses of three bioethical challenges pertinent to Parkinson's disease and propose recommendations for each.

Keywords: History; Human behaviour; Parkinson's disease.

Publication types

Review