Palliative care aims to ease the suffering of patients and their families. For Dr. BJ Miller, a palliative care specialist at UCSF and executive director of San Francisco's Zen Hospice Project, it can be a spiritual calling as well as a medical one.
Miller is uniquely suited to the job. An accident in college resulted in the amputation of one arm below the elbow and both legs below the knees, and left him with lingering pain. It doesn't appear to have stopped him from accomplishing anything — Miller went on to finish his degree, compete in the 1992 Summer Paralympics, attend medical school, volunteer abroad, co-found a tea company and buy a farm, among other pursuits. But he shrugs off the label of poster boy for overcoming adversity; he's much more interested in its unexpected gifts.
Miller shared his thoughts on mortality, love and medicine one afternoon while walking his dog in San Francisco.
Some people may think you are at a disadvantage physically, yet it seems that your accident enriched your life on many levels. Is that how you see it?
Yeah, that's right. I've been very careful right from the start to use my experiences to open up to the special things that come from it, rather than perceiving my accident as something to overcome, or something that closes me off from things. Twenty years into it, there's enough good that has come to my life, the trade-offs have been so profound, that I don't spend a lot of time regretting what happened. My accident has actually brought a lot of beauty into my life.
Why did you decide to work in medicine, specifically palliative care?
After my injury I studied art history at Princeton, which was basically the study of perspective, how we perceive the world and ourselves, and that was very relevant as I refashioned myself after my injuries. Whether we realize it or not, medicine - particularly palliative medicine - works with patients' sense of perspective around their illness, conceptualizing it.
Medicine seemed to be a great way of helping people and being of service; it's a very powerful and loaded profession. It's something you can develop over a lifetime and travel around the globe with.
Originally I worked with other amputees, which turned out to be relatively uninspiring. I didn't want to be a poster child. I'm actually much more interested in the transformation of illness, being transformed by your illness. Furthermore, that illness and disability and death are normal parts of human life, issues to work with rather than pathological invaders to be combated. Palliative care has that ethos — the human's ability to transform oneself — and philosophically that's very fascinating to me. And working in palliative care is fulfilling a need, which I'm always interested in, rather than creating one.
What's the most important lesson you've learned from your patients and their families?
In a nutshell, probably the biggest takeaway is that love matters. I call it the beautiful deathbed test: When a person watches their life come to a close, everything else falls away and it turns out that something as easy as love is so often the only thing that matters.
Death is one of the few things we all have in common. Yet for many of us, it is the thing we fear most. How do you perceive death?
It's a big fat mystery. It's tempting to think that I'm more prepared for death because of my field. But when I'm standing at the edge of my own horizon, who knows what I'll feel. I have no idea what's coming and I find that exciting, rather than scary. I'm very interested in things that are beyond my control. There's the perception that the world's knowable and concrete, and in fact it's not, or not yet!
What drew you to the Zen Hospice Project?
I've been interested in the project since I first learned about it in medical school because it's a place that's fueled by kindness and compassion, rather than invention and resources. Along with my work at UCSF, it's the perfect hybrid of the medical model and the social model that touches everyone. It's allowed me to branch into all the non-medical components that I'm very interested in — arts, spirituality, individuality, community.
How does the Zen Hospice Project's approach to palliative care differ from palliative care services in the hospital?
There's an end point to what the hospital staff can do for someone. It has its limitations because of things like the building and resources and ambitions.
The Zen Hospice Project is a perfect complement to what a hospital can provide. Palliative care is defined around suffering, rather than a specific illness or organ, and this is exactly what Buddhism is all about. It's spirituality, but not at the expense of medicine. Palliative care can be all things — spirituality and medicine.
The Buddha taught that life is happiest for those who learn to meet change, loss and the eventuality of death with equanimity and kindness. Do you practice this philosophy? If so, has this changed the way you live?
Yeah. I've had an excuse to learn these things — an urgency to tend to my own life — early, rather than at the end of my life. Fortunately my life circumstances pulled me out of that striving and endless comparing and contrasting that we can get pulled into, especially at a place like Princeton. It was quicker for me to find the perspective, and now I've made a profession out of it. It's a vital way of life for me — there's not a whole lot of divide between my professional and personal life.
What do you try to accomplish when taking care of your patients?
I try to help them play out their life in their own context. My role is to be agenda-less, to reconcile a person's goal for what's possible in the system. I act as an usher for someone's final stages of self-realization.
You are faced with suffering and dying every day. How do you maintain a “brave face” for your patients, yourself and the people close to you?
I see and recognize the antidote to suffering, which is loving, open-hearted attention. More often than not, my job is inspiring, rather than depressing. The fact of the matter is that death affects everyone and once you can accept that, you find the beauty and meaning in it. It's like making lemonade; death becomes the soil for the beauty, the reason for the compassion.
For the most part, I don't have to put on airs. I have an honest, open face, rather than a "brave face." I can be myself, which is a lot easier.
You own a working farm in Boulder, Utah. How do you spend your time there?
It's a great place to go to feel small. It's a great perspective-maker. A lot of people want to go somewhere to feel big, but I'm quite the opposite. Everything else can fall away when I'm there, the urgency and consequences, and I can see my friends there and sit in the landscape and feel appropriate and small.
Who are your heroes?
I have different heroes for different things. There is no single person who has had a singular influence on me, because I believe that becoming whoever I may be is largely an internal process. But heroes are all over the place.
Steve Jobs for the creativity he brought to bear. My parents are heroic to me, how they have stayed together and worked it out and dealt with my sister's suicide. Also the way my mother deal with her disability, polio, was heroic to me as a child. My friends who took care of me when I was in the hospital, they have been heroic to me. My patients and their families are often heroic. Anyone involved in design or music, which have been very inspirational to me, particularly after my injuries: Frank Lloyd Wright, Francis Bacon, Frank Gehry, Beethoven, Bach.
I'm very interested in and moved by design and aesthetics. One day I'd like to design a building that is purpose-built for dying. Nothing like it exists.
What's your motto or mantra?
I don't necessarily have a mantra, but after my accident I'd often look at myself in the mirror and say, "This is my life. This is my life." Also, I think recognizing the beautiful raw material that surrounds me, appreciating and returning to what's right before me, has always been inspirational. I guess this has to do with being present.
How do you want to be remembered?
As someone who cared and someone who tried.
Interviewed by Abby Sinnott.
Photo taken by Tom Seawell