Dying, Disability and Advance Directives

In the recent reform discussions end-of-life care became controversial when it was suggested that reform bills might force patients to fore-go some care in order to control costs.  While this was not accurate, the issue of ensuring that patients’ wishes for end-of-life care are respected is important.  Two recent articles address issues surrounding end-of-life.  One looks at the prevalence of advance directives, surrogate decision makers and how often a patient’s preferences are respected.  Another examines common trajectories at the end-of-life and the extent to which those involve disability.  Together the research may help physicians work more effectively to ensure the patients have considered what kind of care they want as they near the end of their lives and express those preferences well in advance of serious disability which may affect their ability to make decisions for themselves.

In the study of advance directives, researchers used survey results from the U.S. Health and Retirement Study to examine whether persons had a living will, had assigned the right to make decisions to a proxy and the extent to which people in the survey who died received care consistent with their preferences.  (NEJM Article) The researchers found that about 43% of patients needed medical decision-making before death and around 70% of those were unable to make the decision themselves because of their medical condition.  In most cases, around 68% of the time, these patients had some form of advance directive.  The patients who were unable to make decisions for themselves and had an advance directive received care that was consistent with the advance directive almost all of the time. Although a survey-based study such as this has limitations, it appears that substantial progress has been made in getting patients to formulate advance directives and in following the patients’ preferences.

In the study of disability at the end-of-life, the authors relied on ongoing research involving a cohort of elderly persons who were assessed every few months for health status.  (NEJM Study) (Abstract)  There were around 750 subjects in the study, half of whom had died at the time of the study.  The researchers identified five common courses of disability leading up to death:  17% had no disability; 20% had catastrophic disability; 17% had accelerated disability; 24% had progressive disability and 22% had persistent severe disability.  Conditions leading to any of the categories varied widely, leading to difficulty in predicting which patients would follow which trajectory, with the exception of advanced dementia generally being accompanied by persistent severe disability.  While an inability to assume a particular course of deterioration for a specific patient makes health care providers’ task a little harder, it is encouraging that most elderly persons nearing death do not have a severe disability until quite near that death.  They should therefore be able to continue to participate in decisions about their care, to some extent be aware of their deterioration and be able to be approached at the early stages of that deterioration by a physician to set preferences about the care they wish to receive if deterioration continues.

It is important primarily as a matter of respecting individual dignity and self-control that this line of research continues and that medical practice incorporates its findings into patient interactions designed to maximize following of informed patient preferences.