Monday, November 22, 2021
The Limits of Advance Care Planning
Several luminaries of palliative care – writing in the Journal of the American Medical Association – recently outlined a strong case against advance care planning, referring specifically to advance directives and the efforts to plan for a future illness state. Planning for the end of life and documenting preferences was meant to improve “goal-concordant care” by providing a road map of a person’s wishes for the end of their life when they can no longer communicate for themselves.
When the United States Supreme Court ruled against the family of Nancy Cruzan, they effectively placed a limit on the right to refuse medical treatment for those unable to speak for themselves, declaring that while there may be a “right to die” even for an incapacitated patient, the state may require clear evidence to overrule its interest in the sanctity of life. In addition to the changing legal landscape came our growing anxieties around medical technology and its encroachment on the boundary between life and death. We have become enamored by the idea that clearly documented preferences, whether in a legal document or in a medical chart, could save us from some future purgatory between life and death.
As the advance directive industrial complex grew, it soon became en vogue to claim that the ubiquitous completion of these documents could even curb healthcare spending. The common wisdom became: 1) people don’t want aggressive medical interventions at the end of life - they want to die peacefully at home, and 2) medical interventions at the end of life (that people don’t really want anyway) is expensive, so 3) if we can get people to document their preferences, we can save a lot of money by avoiding unwanted, expensive medical interventions at the end of life.
The drum of discontent over advance care planning, especially advance directives, has been beating for a while now. In reviewing the landscape of evidence, it seems that advance directives may not be able to consistently influence end of life care in a measurable way. Therefore, it is not surprising that the theorized cost savings to the healthcare system never materialized. Not only do the vast majority of Americans not complete advance directives, but there is good evidence that they don’t actually want their documented preferences to be followed. They would rather have their doctor and someone they trust make those decisions in real time.
More concerning, focusing on advance directives may not even be ethical. It asks people to make decisions for their future disabled selves – often focusing on function and independence. Yet we know that people are generally more resilient than they believe and adapt to all kinds of changed and debilitated states. We also know that able bodied people tend to discount the quality of life of someone living with a disability, even when that person is our future selves. This issue alone has driven a wedge between the disability community and medicine, and continues to be a blemish on the otherwise inclusive culture of palliative care. There are serious ethical problems in asking people to decide today what their future selves would consider a life worse than death.
In the JAMA article, the authors recommend that advance directives and future-oriented conversations be deemphasized in favor of 1) documenting a healthcare surrogate - someone to relay our values and guide clinicians based on what they believe would be in our best interests - and 2) training clinicians to have “high-quality discussions” in the moment, when “actual (not hypothetical) decisions must be made.” That makes a lot of sense. And yet, we still require a framework for how to care for our patients before critical illness and end of life, for those patients still living with serious illness. What are the metrics of success if not completing advance directives or documenting future preferences? In our outcomes obsessed healthcare system, where is the value in informing our patients of what to expect in the future?
Perhaps a better framework for thinking about these future-oriented conversations is to be found in the work being done as part of Ariadne Labs Serious Illness Care Program and others like it. This program is training clinicians to have Serious Illness Conversations with their patients before they end up in the final stage or in intensive care. Instead of measuring success in outcomes, such as an advance directive or a documented preference, they want to know if patients and their clinicians find these conversations valuable. For example, they ask patients: 1) Did this conversation give you a greater (or lesser) sense of control? 2) Did you get the right amount of information from this discussion? And they ask clinicians: 1) Did you learn something surprising about your patient? 2) How did this discussion affect your patient’s emotional state? 3) Did your patient have a good understanding of prognosis? They seem to favor process questions: Were these conversations feasible, acceptable, and were you satisfied?
This approach to serious illness conversations – focusing on the process of informing and tending to emotion in lieu of attempts to influence future outcomes – may be a big (and possibly disappointing) paradigm shift for our outcomes-driven health system. Occasionally, Medicine’s role is to heal or to cure, sometimes it is to ease suffering, and often, all it can do is inform and provide counsel. It can be hard for us clinicians to realize that we cannot fix. Sometimes the only reason to do something is because it is what patients expect, it is what they need, and because it is the right thing to do. Is that enough of a reason to invest resources in hiring people to do this work, and to train others to become proficient? Though it may not lead to universal “goal-concordant care” or to cost savings, is it enough for us to do it because it is right? And can we live with that?
For more Pallimed posts about Advance Care Planning.
For more Pallimed posts by Dr. Pottash click here.
Michael Pottash MD MPH is a Palliative Medicine Physician at MedStar Washington Hospital Center and Associate Professor of Medicine at Georgetown University School of Medicine.
