In 2003, I decided to branch out from geriatrics and try something new. Well, a little new. I recreated myself as a palliative care physician. I’d previously been a bit dubious about palliative care, which in its early days focused principally on people with cancer and almost exclusively on people who were imminently dying. My interest was in people who were in the last phase of life, whether that phase would last days, months, or even years. My patients at Hebrew Rehab Center, where I had worked for the previous eleven years, had an average age of 88. They all had major limitations in their ability to function independently, otherwise they wouldn’t have been living at Hebrew Rehab: either significant physical problems or, a large proportion of cases, cognitive dysfunction, or both. I had come to realize that many if not all of them stood to benefit from a palliative approach to medical care. So why not embrace palliative care as a specialty, focusing principally on very old people, but also expanding my horizons to include younger individuals?
Palliative care was a good fit for me. I came to see the field as built on three legs: advance care planning (some people include communication here), psychosocial support, and symptom management. It is an interdisciplinary field and its focus is on supporting patients and their families through a difficult period of their lives. Much of the work involves making sure people understand their condition and what they are facing so they can make realistic and wise decisions about the treatments they receive as well as about where and how they live. Many of my colleagues shied away from such discussions; I thrived on them, feeling I could help assure that patients got the kind of care that made sense for them as they approached the end of their lives. Often, I rescued them from needlessly burdensome and ultimately futile medical interventions. There was, however, one strand of palliative care that disturbed me.
What bothered me was the tendency to exalt dying, to see dying as an opportunity for growth and transcendence. Now, not all palliative care physicians, hospice nurses, and other professionals are afflicted by this tendency, but for some it was kind of a religion. The business of palliative care, in this view, is to promote spiritual growth. And by implication, patients who don’t find dying uplifting, who aren’t able to reach new heights or discover new aspects of themselves, are failures.
I confess that I’ve never been enthusiastic about the American psychologist, Abraham Maslow, with his five (later nine) stages, culminating in “self-actualization,” or the experience of “self-fulfillment” manifested by “peak growth experiences.” I’m even less enthusiastic about applying this model to people approaching the end of life. Dying, and even living the last six or twelve or twenty-four months of life, is often a messy business. It seems to me to be good enough to be physically and emotionally reasonably comfortable. That’s hard enough to achieve. Ideally, it involves attaining a certain level of inner peace, of acceptance of the life one has led. But growth experiences? Euphoria? Joy? Wonder? That seems a bit much. So I was pleased to read the article in the Sunday NY Times about B.J. Miller, a palliative care physician who is a triple amputee and who until recently served as executive director of the “quirky” Zen Hospice Project in San Francisco.
Miller is by all accounts a remarkable doctor and human being. He is charismatic. He is intense. He has the capacity to truly “be” with people and help them come to terms with their condition and their lives. His story, well told by journalist Jon Mooallem, is inspiring. But he isn’t big on transcendence. In his own words, palliative care in general and Zen Hospice in particular aren’t about our need for death to be a hypertranscendent experience: “Most people aren’t having these transformative deathbed moments. And if you hold that out as a goal, they’re just going to feel like they’re failing.” Instead, the name of the game is to allow those who are dying and the people who love them to “live a succession of relatively ordinary, relatively satisfying present moments together.” Now that’s a philosophy that makes sense.