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Advance Care Planning and Health Care Preferences of Community-Dwelling Elders: The Framingham Heart Study

¹ Division of General Medicine and Primary Care, Department of Medicine, Harvard Medical School, Beth Israel Deaconess Medical Center, Boston, Massachusetts.
² National Heart, Lung, and Blood Institute's Framingham Heart Study, Framingham, Massachusetts.
³ Department of Mathematics and Statistics, Statistical Consulting Unit, Boston University, Massachusetts.
⁴ Department of Neurology and ⁵ Section of General Internal Medicine, Department of Medicine, Boston University School of Medicine, Boston Medical Center, Massachusetts.

Address correspondence to Ellen P. McCarthy, PhD, Division of General Medicine and Primary Care, Department of Medicine, Beth Israel Deaconess Medical Center, 1309 Beacon Street, Suite 220, Brookline, MA 02446. E-mail: emccarth{at}bidmc.harvard.edu

Objective. The study objective was to describe self-reported advance care planning, health care preferences, use of advance directives, and health perceptions in a very elderly community-dwelling sample.

Methods. We interviewed surviving participants of the original cohort of the Framingham Heart Study who were cognitively intact and attended a routine research examination between February 2004 and October 2005. Participants were queried about discussions about end-of-life care, preferences for care, documentation of advance directives, and health perceptions.

Results. Among 220 community-dwelling respondents, 67% were women with a mean age of 88 years (range 84–100 years). Overall, 69% discussed their wishes for medical care at the end of life with someone, but only 17% discussed their wishes with a physician or health care provider. Two thirds had a health care proxy, 55% had a living will, and 41% had both. Most (80%) respondents preferred comfort care over life-extending care, and 71% preferred to die at home; however, substantially fewer respondents said they would rather die than receive specific life-prolonging interventions (chronic ventilator [63%] or feeding tube [64%]). Many were willing to endure distressing health states, with fewer than half indicating that they would rather die than live out their life in a great deal of pain (46%) or be confused and/or forgetful (45%) all of the time.

Conclusions. Although the vast majority of very elderly community-dwellers in this sample appear to prefer comfort measures at the end of life, many said they were willing to endure specific life-prolonging interventions and distressing health states to avoid death. Our results highlight the need for physicians to better understand patients' preferences and goals of care to help them make informed decisions at the end of life.

Key Words: Advance directives • Geriatrics • End-of-life care • Patient-centered care • Decision making

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