Last week I wrote about the Massachusetts Medical Society’s plans to survey their members, part of which involved a debate over the terms medical aid in dying” vs. “physician-assisted suicide.” As part of that discussion, one Massachusetts physician emphasized the need to highlight the growth and development of the field of palliative care in any discussion of end-of-life treatment.
Almost as if to take up that admonition, The New York Times Magazine recently ran a lengthy profile piece of Dr. B.J. Miller, a palliative care physician at “a small, quirky hospice in San Francisco,” the Zen Hospice Project.
Dr. Miller’s personal story of becoming a tripple amputee during his college years informs his views on suffering and his approach to patient treatment. The article relays Dr. Miller’s story, the story of the Zen Hospice Project, and the story of Randy Sloan, a 27 year-old man diagnosed with terminal cancer.
As I say, it’s a lengthy piece, so there are a number of items I could draw out of it. But I’d like to share with you a few things that have been on my mind since I read it.
The key questions on which Dr. Miller and Zen Hospice focus are: “What is a good death? How do you judge? In the end, what matters?”
Indeed. We each, individually, have thoughts on what the answers to these questions are. Increasingly, we are seeing the ideas of autonomy and control dominating the conversations around end-of-life issues, particularly in political debates over the legalization of physician-assisted suicide. Combined with the emphasis on autonomy and control is the idea that suffering must be avoided or eliminated. Thus, physician-assisted suicide is held out as the solution: assert autonomy, maintain control, avoid suffering.
As the name indicates, the Zen Hospice Project is influenced by Buddhist views, which include the idea that suffering is a part of life.
There’s an emphasis on accepting suffering, on not getting tripped up by one’s own discomfort around it.
Miller is not Buddhist, but in the midst of his experience of losing parts of three limbs, he arrived at a similar perspective:
Miller refused, for example, to let himself believe that his life was extra difficult now, only uniquely difficult, as all lives are. He resolved to think of his suffering as simply a “variation on a theme we all deal with — to be human is really hard,” he says . . . Don’t we all treat suffering as a disruption to existence, instead of an inevitable part of it? He wondered what would happen if you could “reincorporate your version of reality, of normalcy, to accommodate suffering.” As a disabled person, he was getting all kinds of signals that he was different and separated from everyone else. But he worked hard to see himself as merely sitting somewhere on a continuum between the man on his deathbed and the woman who misplaced her car keys, to let his accident heighten his connectedness to others, instead of isolating him.
In the end, here is what I wonder: How can those of us who agree with Dr. Miller that “to be human is really hard,” better stand against the increasingly popular view that to be human is to be autonomous, to be in control, and thus to avoid suffering?
I am not saying that autonomy and control are not important or do not have their place. I am saying that they need to be balanced against other parts of our lives, and should not be pursued as ultimate goals. We need to maintain a realistic perspective that yes, suffering does disrupt our sense of control and it may rob us of some of our autonomy. Proper palliative care recognizes this, and seeks to allow patients to maintain as much autonomy and control as possible without falling into the view that all suffering simply must be eliminated.
What is needed is a deep societal change of mind and attitude. How might this come about? For one, we continue to educate people on the dangers of assisted suicide, and on the misplaced priorities that are driving it. And we continue to point to helpful and hopeful resources like palliative care and the Zen Hospice Project.
There is much work ahead. My humble suggestion is that there are pointers toward a helpful and healthy direction in this lenthy NYT Magazine piece.