End-of-Life Decision Making and the Role of Advance Directives

Discussions prior to passage of recent healthcare reform laws raised awareness of the use of advance directives to direct end-of-life care. Advance directives document a patient’s wishes regarding life-sustaining treatment, choice of a surrogate decision maker, or both. In 1990, Congress passed the Patient Self-Determination Act mandating that all Medicare-certified institutions provide written information about a patient’s right to formulate an advance directive. Recently, according to researchers, concerns were generated by some of the provisions in the new law that reimbursing providers for helping patients with advance directives would lead to denial of necessary care.

Researchers recently completed a study to assess the need for and value of advance directives. They determined the prevalence and predictors of lost decision-making capacity and decision making at the end of life. They also assessed the association between advance directives and care received at the end of life. Results of the study were reported in the New England Journal of Medicine [2010;362(13):1211-1218].

The study utilized data from the Health and Retirement Study, a survey of a nationally representative cohort of US adults ≥51 years of age. The current study was limited to persons ≥60 years who died between 2000 and 2006, for whom a proxy answered a study-directed exit interview after the death. Proxy respondents were adult children (48.9%), spouses (32.5%), or other relatives (13.5%). Proxies of the deceased survey respondents who required surrogate decision making were the deceased’s actual decision maker 79.5% of the time.

The questions addressed whether the deceased had completed a living will or durable power of attorney for healthcare, maintained the capacity for decision making, or needed decision making at the end of life. For those who needed decision making, data on what decisions were made and who made them were collected.

There were 4246 respondents to the Health and Retirement Study who died. Of those, exit data were gathered on 93.3% (n=3963), and 88.2% (n=3746) were ≥60 years of age at the time of death. Of the 3746, 42.5% (n=1536) required decision making about treatment in the last days of life. After adjusting for sociodemographic and clinical covariates, memory deficits, cerebrovascular disease, nursing home status, and loss of a spouse were associated with a greater likelihood of the need for decision making.

There were 1409 decedents who required decision making for whom complete data were available. Of those, 70.3% lacked the capacity for decision making. Predictors of an inability to make an end-of-life treatment decision were cognitive impairment, cerebrovascular disease, and nursing home residence.

Of those who needed decision making but lacked the capacity, 67.5% had an advance directive: 6.8% had a living will only, 21.3% had appointed a durable power of attorney for healthcare only, and 39.4% had prepared a living will and appointed a durable power of attorney for healthcare.

Of those who had a living will, 1.9% had requested all care possible, 92.7% had requested limited care, and 96.2% had requested comfort care; 83.2% of those who wanted limited care and 97.1% of those who wanted comfort care received the care they requested. Of the 10 people who requested all care possible, 5 received it. Those who requested all care possible were more likely to receive aggressive care compared with those who did not request it (adjusted odds ratio [OR], 22.62; 95% confidence interval [CI], 4.45-115.0).

Compared with those without living wills, persons with living wills were less likely to receive all care possible (adjusted OR, 0.33; 95% CI, 0.19-0.56); those who had assigned a durable power of attorney for healthcare were less likely to die in a hospital (adjusted OR, 0.33; 95% CI, 0.19-0.56) or receive all care possible (adjusted OR, 0.54; 95% CI, 0.34-0.86) compared with those who did not assign a durable power of attorney for healthcare.

The study findings suggest that more than a quarter of elderly adults may need surrogate decision making at the end of life, and a living will and a durable power of attorney had significant effect on decision-making outcomes. The researchers concluded by noting that “advance directives are important tools for providing care in keeping with patients’ wishes.”—Tori Socha