Michael S. Dauber, MA, GBI Visiting Scholar

Many moral dilemmas faced by clinicians, patients, and their families arise when individuals have not made plans for the end of their lives or discussed their wishes with their loved ones. To prevent and mitigate these issues, ethicists have suggested for decades that individuals should complete documents such as advanced directives like living wills (legal documents that indicate one’s wishes for interventions like intubation and cardiopulmonary resuscitation (CPR)), and to name a healthcare proxy (an individual to make decisions on one’s behalf in the event one becomes unable). Such measures tend to make it easier for individuals to address moral dilemmas in practice and to determine the ethically appropriate surrogate decision maker for a patient.

According to a recent study published in Health Affairs, few Americans have taken either of these measures. Researchers compiled results from over 150 studies of end-of-life planning measures and determined that only 36.7 percent of those surveyed had completed some sort of advanced directive, with 29.3 percent of those individuals completing living wills and 33 percent empowering a healthcare proxy. The study also found that 42 percent of individuals aged 65 or older had completed some sort of advanced directive, as opposed to 32 percent of individuals younger than 65.

There are several reasons why individuals may be hesitant to complete healthcare proxies. Many young people may feel they can put off decisions about care at the end of their lives because such matters are comparatively unlikely to occur in the short term. Unfortunately this is not always the case: while it is true that many advanced illnesses are more likely to occur as patients age, individuals of any age may contract dangerous infections or become injured in an accident, such that they must be placed on a ventilator or may need to be resuscitated. Another common view is that people may not see end-of-life issues approaching because they are in relatively good health. However, the results indicated that individuals were only slightly more likely to have completed end-of-life planning measures if they were chronically ill (38.2 percent) than if they were healthy (32.7 percent).

Perhaps the biggest explanation for the numbers lies in the cultural perceptions of documents like Do Not Resuscitate (DNR) orders. Many individuals feel that DNR orders equate to orders not to treat individuals, or will bias doctors into not trying as hard to save individuals. According to Dr. Katherine Courtright, a professor at the University of Pennsylvania and the senior author of the Health Affairs study, DNR orders “[become] scary [documents] that say ‘Let me die.’”

People may also find it hard to imagine what they would want when they are in a critical care situation before they are actually having the experience, according to Dr. Diane Meier, director of the Center to Advance Palliative Care. Others may fear that once they fill out an advanced directive they will be unable to alter them. This issue is especially significant because many patients change their wishes over time, according to Dr. Meier.

Another significant problem arises from the fact that many advanced directives may not seem specific enough to accurately reflect one’s wishes. For example, one may not wish to be placed on a ventilator if one is in an accident and enters a persistent vegetative state, but might be willing to accept ventilation for short-term treatment.

There are several ways to solve these problems. First, clinicians must make a conscious effort to educate individuals about the benefits of advanced care planning and to inform them of the ways in which such policies can be changed throughout one’s life. Second, individuals should be encouraged to create more specific living wills: rather than simply stating a preference not to be intubated or resuscitated, individuals should make efforts to be specific with their wishes and set them in context. For example, if an individual would be willing to accept temporary intubation if there were a reasonable prospect of regaining the capacities one possessed before hospitalization, or to recover from a temporary respiratory problem, but not for treatment of aggressive illnesses like end-stage cancers, living wills should include that information. Third, many people likely form their impressions of advanced directives and healthcare proxies from television programs and movies that may depict “rogue” healthcare agents that may not represent the patient’s wishes or dramatic end-of-life scenarios, so efforts should be made to make such representations more realistic. At the very least, such depictions should try to fully explain the policies at work and the mechanisms in place to protect patients throughout the care process.

But perhaps the biggest way to help clarify end-of-life preferences is to discuss them with family and friends, even if those conversations may seem uncomfortable at first. Ellen Goodman, founder of The Conversation Project, says “The most important thing is to have the conversation with the people that you love around the kitchen table and to have it early.” A simple statement that one would not want to be kept alive artificially or that one would not want to have a tube in one’s throat for the rest of one’s life can remove a lot of the guess-work that a patient’s doctors and family members face when one’s wishes are not specified. Similarly, appointing a healthcare proxy can eliminate the need to search for an available family member to make decisions for an incapacitated patient.

End-of-life issues are highly personal and subjective, and in the absence of clear direction, clinicians and families must struggle to reconcile their own wishes with the unknown wishes of the patient. While conversations decisions about end-of-life issues may be difficult or upsetting at first, they are one of the most effective ways to ensure that patients are cared for ethically and that a patient’s wishes are respected.