Prevalence and Contents of Advance Directives in Patients Receiving Home Parenteral Nutrition

Background: Ethical issues may arise with patients who receive home parenteral nutrition (HPN) and have a change in their overall health status. We sought to determine the extent of advance care planning and the use of advance directives (ADs) by patients receiving HPN.

Materials and methods: Retrospective review of the medical records of adult patients newly started on HPN at the Mayo Clinic, Rochester, Minnesota, between January 1, 2003, and December 31, 2012, to determine the prevalence and contents of their ADs.

Results: A total of 537 patients met the inclusion criteria. Mean (SD) age at commencement of HPN was 52.8 (15.2) years, and 39% (n = 210) were men. Overall, 159 patients (30%) had ADs. Many mentioned specific life-prolonging treatments: cardiopulmonary resuscitation (44 [28%]), mechanical ventilation (43 [27%]), and hemodialysis (19 [12%]). Almost half mentioned pain control (78 [49%]), comfort measures (65 [41%]), and end-of-life management of HPN (76 [48%]). Many also contained general statements about end-of-life care (no "heroic measures"). The proportion specifically addressing end-of-life management of HPN (48%) was much higher than that previously reported in other populations with other life-supporting care such as cardiac devices. The primary diagnosis or the indication for HPN was not correlated with whether or not the patient had an AD (P = .07 and .46, respectively).

Conclusion: Although almost one-third of the patients had an AD, less than half specifically mentioned HPN in it, which suggests that such patients should be encouraged to execute an AD that specifically addresses end-of-life management of HPN.