There is an ongoing debate among the palliative care community about the value of advance care planning and whether current evidence suggests that advance care planning is inherently ineffective. I’m not writing this essay to take a side in this debate—I believe both sides have merit. Rather, I write to tell 3 personal stories of the role advance care planning has played for my family and in my own life. My entire career has focused on developing and evaluating ways to improve communication with patients and families about serious illness care. These 3 stories are informed by that experience and yet are told not from the perspective of a physician and researcher, but from the perspective of a son-in-law, son, and patient.
The first story is about my mother-in-law. She was a vivacious and strong-willed woman who cared deeply for her family. When she was in her mid-70s, she underwent a multilevel lumbar fusion for insufferable pain and had a cardiac arrest on the operating table. Once it became clear that she was unlikely to ever regain consciousness, our family gathered with the medical team in the family conference room of the intensive care unit where she lay. As part of that meeting, we read aloud her handwritten living will, a letter to her family saying that she would never want to be kept alive on life support if she did not have the ability to interact with, and express love to, her family. This document did not change the care she received at all because there was no doubt among any of us, even without that letter, that she did not want to be kept alive by life-support machines under these circumstances. In addition, despite our family’s experiences of grief and sadness, I don’t believe that any objective scale of symptoms of anxiety and depression experienced by our family would have been measurably altered by that letter. And yet, that letter was a profound source of comfort to my wife, my father-in-law, my brother-in-law, and me.
The second story is about my own mother. She was a remarkable woman who had polio as a teenager and lived her adult life in a wheelchair with one weak arm. Despite these physical limitations, she overcame adversity to marry her high school sweetheart, have 2 children, return to college after her kids were in school, and have a long career in academic administration. When she was in her late 70s, my extended family sat together to review The Conversation Project, a guided conversation about our values and goals as they relate to end-of-life care. My mother’s values represented what could be called a “values conflict.” Her years living with disability made her fiercely independent, yet she was also an incredibly adaptable person who faced each new challenge with remarkable optimism. A couple of years after this conversation, she developed progressive postpolio syndrome and dementia, becoming unable to leave her bed, confused, and forgetful. The values elicited during the earlier exercise did not help our family decide whether her quality of life was one that she would find acceptable. We knew she wouldn’t want to be hospitalized or have a feeding tube or be placed on a ventilator, but we struggled as a family to understand how to use her previously expressed values to guide decision-making about active feeding and oxygen therapy. Some of us put more weight on independence and others on adaptability. Even though this advance care planning didn’t resolve differences in our opinions about the best care for my mother, knowing her values enabled us to understand and accept these divergent perspectives about what she would want and provides great comfort to me today about why we struggled with decisions for her end-of-life care. That initial discussion helped to prepare us as a family for having difficult discussions when they became necessary for medical decision-making. And yet, the value of this conversation would also not be captured by traditional outcome measures used to evaluate the benefits of advance care planning.
The third story is about me. In March 2021, I was diagnosed with bulbar-onset amyotrophic lateral sclerosis giving me a projected median survival of 2 to 4 years. My speech and swallow are deteriorating, and I am looking ahead to a future with decisions about a gastrostomy tube and tracheostomy. Discussing advance care planning with palliative care specialists—whether they are my friends or my own doctors and care team—helps me tremendously in coming to terms with my illness and making the most of the time I have left. These discussions help me focus more on joy and gratitude and a little less on grief and fear. Since I’m still in the midst of my terminal illness journey, the jury is out as to whether the value of these discussions can be measured with available outcome measures. I doubt it can.
I share these stories not as irrefutable evidence of the importance of advance care planning; they are only 3 anecdotes in a sea of anecdotes and rigorous research. Instead, I share these stories as 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. I share these stories to try to broaden the debate and provide support for my belief that both sides are right. Is there value in using our existing outcome measures to assess the impact of the type of advance care planning I have experienced in my life? I believe not. Should we continue trying to improve and evaluate advance care planning implementation, innovation, and scholarship? My life experiences, as illustrated by these 3 stories, would suggest that we should. While it is important to acknowledge the inherent limitations of advance care planning, and the difficulty in demonstrating its value, there are unmeasurable benefits that must also be acknowledged, promoted, and improved.
Section editor: Preeti Malani, MD, MSJ, Associate Editor.
Corresponding Author: J. Randall Curtis, MD, MPH, Harborview Medical Center, University of Washington, 325 Ninth Ave, Box 359762, Seattle, WA 98104 (email@example.com).
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Full link: https://jamanetwork.com/journals/jama/fullarticle/2786826