End-of-Life Care Issues

A Personal, Economic, Public Policy, and Public Health Crisis

Dan K. Morhaim, MD; Keshia M. Pollack, PhD, MPH

Disclosures

Am J Public Health. 2013;103(6):e8-e10. 

In This Article

Rate of Americans Who Have Completed Advance Directives

The question of rate of completion across the general population arose as we worked on public policy questions in the Maryland legislature relating to end-of-life care (the lead author is a Maryland State Legislator).[3] Although data are collected on almost every aspect of health care, this is one area where data were scarce. Previous studies that have investigated the frequency of advance directive completion were focused on selected populations of people already confronting end-of-life care issues: nursing homes, senior centers, or oncology practices.[4–8] Information about the prevalence of advance directives across the general population was lacking, which posed a challenge to the development of evidence-informed policies.

Therefore, we initiated a study to investigate the frequency of advance directives and people's attitudes toward them.[9] Our study focused on Maryland, but because Maryland's population demographics are fairly similar to those of the United States,[10] what we learned has broad application for policymaking in this area.

Our study[9] revealed that more than 60% of individuals aged 18 years and older want their end-oflife wishes to be respected; however, only about a third of them had completed advance directives. People had given thought to the question of end-of-life care, but a majority had not completed the forms. What were the reasons people did not complete advance directives? About a quarter of those who did not have an advance directive said they did not know about them. Others felt they were too young or healthy to complete them or were concerned about the cost, complexity, or time that might be required to do so.

We also found that people wanted to obtain information on advance directives from their doctors or other health care providers. They preferred this to getting information from attorneys, clergy, or online sources. This means that health care providers have an important role to play. One of us (DM) has written a book, The Better End: Surviving (andDying) on Your Own Terms inToday's Modern Medical World, to help encourage this discussion in families and with providers.[11]

Our study also revealed significant differences among racial and ethnic groups in the rate of completion of advance directives. About twice as many Whites as African Americans completed advance directives. The difference between Whites and African Americans regarding the prevalence of advance directives is likely attributable to several factors, including cultural differences in family-centered decision-making, distrust of the health care system, or poor communication between health care professionals and patients.[12,13]

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