Since 2008, April 16 has been designated National Healthcare Decisions Day, a day that “exists to inspire, educate and empower the public and providers about the importance of advance care planning,” according to The Conversation Project. Advance care planning makes sense for everyone because despite modern medicine’s best efforts to prolong life, death will eventually come for us all. And although most Americans imagine a “good death” as taking place at home, peacefully passing away surrounded by grieving loved ones, the reality is that acute clinical deterioration may be unpredictable; signs of the end of life are not always well defined; and challenging decisions about medical interventions may need to be made precisely when the patient is least capable of making them.
Most doctors receive little formal training in advance care planning. To the extent that I was aware of advance directives in medical school and residency, it was their relationship to the “DNR/DNI” (do not resuscitate, do not intubate) order that my attending physicians urged discussing with critically ill patients with little chance of survival if their hearts stopped beating or they required invasive respiratory support. And then, these directives often made little sense, as documents that expressed life sustaining treatment wishes at an earlier stage of life often conflicted with the patient’s best interests as judged by their spouse or surrogate decision maker and the medical team. Indeed, it’s possible that traditional advance directives can undermine advance care planning, since in the words of one older adult, “if you have it [the advance directive] in writing, you do not have to worry about it [having uncomfortable serious illness conversations].”
In a 2021 JAMA Viewpoint, three national palliative care leaders observed that our current model of advance care planning has failed to achieve its goals of promoting goal-concordant end-of-life care and reducing heroic end-of-life interventions with little or no value. Citing two reviews of more than 1600 research studies, they concluded that advance care planning had essentially no effect on health care use, quality of life, or the likelihood of patients receiving care consistent with their expressed goals and values. Noting the complicated series of steps that are essential to the success of advance care planning, they argue that trying harder and providing more incentives for patients and physicians to have serious illness conversations in advance of serious illness is unlikely to yield better results and may cause unintended consequences by causing health care organizations to neglect other areas of clinical care. Instead, they suggested that efforts focus on improving communication and shared decision making between clinicians and health care proxies / surrogate decision makers designated by patients to carry out their wishes at the end of life.
To be sure, not everyone agrees that advance care planning is broken beyond repair. Dr. J. Randall Curtis, a palliative care physician who was diagnosed last year with amyotrophic lateral sclerosis (ALS; “Lou Gehrig’s disease”), wrote a related piece in JAMA that offered three personal examples of the process working as it should: his mother-in-law, his mother, and his own soon-to-be-fatal diagnosis. He admitted that these anecdotes do not “prove” the effectiveness of advance care planning or override the rigorous research performed by others in his field, but are “examples of the diverse ways that advance care planning can support resilience, understanding, feelings of peace, and recovery from grief even in circumstances where this advance care planning doesn’t change the care received or other measurable outcomes.” To those who debate whether advance care planning is inherently ineffective or could be made more effective, his view was that “both sides are right.”
Unfortunately, like every sector of health care in the U.S., end-of-life care is inequitable. A recent editorial in American Family Physician discussed racial disparities at the end of life, noting that compared to white patients, “Black patients receive more aggressive and nonbeneficial medical care at the end of life,” whether for terminal cancer, trauma, or accessing hospice and palliative care services. Ironically, one of the authors’ proposed strategies to mitigate these disparities is “making advance care planning a standard for every adult patient.” For some it is the problem, to others it is the solution. And relatively few doctors and patients are doing it, even though Medicare has paid clinicians for having this conversation since 2016. For me, the bottom line is that a static document that a patient can fill out and forget is unlikely to be useful in the future, while a prolonged series of discussions with trusted clinicians and family members – particularly one’s spouse or life partner – may be more helpful in guiding end-of-life care, though there are no guarantees.