End of Life-Zen Hospice Project

life

As a college student at Princeton University, BJ Miller suffered an almost fatal electrical accident that resulted in the loss of his legs below the knee and his left forearm. Determined to help others after his personal tragedy, he went on to earn a medical degree at the University of California San Francisco (UCSF), and then completed a fellowship in Hospice & Palliative Medicine at Harvard Medical School. Today, BJ is a palliative care specialist and educator at UCSF, and executive director of San Francisco’s Zen Hospice Project, which integrates spiritual and humanitarian approaches to end-of-life care. Here, he shares what he’s learned, what he hopes for, and what propels him to do such extraordinary work.

What motivated you to get involved in this work?

A big part of my motivation comes from my personal experience around loss and suffering. Rather than perceiving my accident as something to overcome, or allowing that experience to close me off from things, I try to remain open to the many special things that have come from it. It’s been twenty years now and so much good has come. The trade-offs, of course, have been profound, but welcome enough. My accident has actually brought a lot of beauty into my life.

During my internship at the Medical College of Wisconsin, I became inspired by the potential of palliative care. With its focus on people rather than disease, and its organization around suffering and the human condition, it seemed like a revolutionary possibility in medicine. With our healthcare system itself infirmed and in need of reimagining – especially as our population is rapidly aging and living much longer with chronic disease – palliative care makes practical sense. I have seen a shift toward nature, and a clearing for mystery – this actually helps us embrace a more philosophical and creative response to suffering and mortality.

What have you been most surprised to learn?

How unprepared so many of us are for our own mortality. How entrenched and defended we can be against something that is inevitable. Our culture is generally wired to turn away from death, and it’s difficult for our concepts and systems to shift. There’s the perception that the world is knowable and concrete, and in fact it’s not. I’m interested in things that are beyond my control. Even with access and understanding and resources, I am continually humbled by how tricky it is to be a human being.

What do you most want people to know?

While I do think “denial” is widespread and a significant hurdle to coming to terms with our eventual death, after doing this work for some time, I’ve come to think denial is no longer the crux of the problem. As a society, we’re getting past that issue on some level. I rarely meet anyone who will not readily admit that they will die. Now it seems that the issue is more about not knowing what to do with that knowledge and how to approach the subject. Most people want to know how to care for and help prepare a loved one for the end; and second, how to prepare themselves.

Even simple steps, like completing an Advanced Directive, can be a valuable process for thinking and talking about your choices and preferences should you become seriously ill or injured. At Zen Hospice Project, we see how reflecting on mortality – one’s own death – can actually provide the opportunity for living more fully.

Who or what has made the greatest impression on you during your involvement?

There are so many on the who side. The what side is easier to answer. Two things come to mind: time and the material world.

Time floors me. It’s existence and the dynamism it brings to life is fascinating and wondrous. And, of course, horrifying. Sometimes we make music with it, and other times we squander it mightily, tragically. In hospice and palliative care, the clock is omnipresent. Tick tock, tick tock. Time is what is running out for our “patients.” And, one’s time is what a good caregiver offers, not necessarily measured in numbers, but in quality of presence. So, it’s the field’s uber subject, and it’s also the strongest therapeutic tool of the trade.

Materialism gets a bad rap – for good reason – but the material world is an enormous means of meaning and beauty. Since starting in this career, I’ve recalibrated my faith in the physical body, in architecture, in art, in clothing, in urban space, in the woods and water, in my bicycle, and on. I’ve come to see the material world as the stuff of creation – raw material – and all that we imbue it with reveals us, good and bad. I’ve started to see death as the end of my senses, when I am no longer able to perceive the world around me. Therefore, the material world is a wonderful source for gratitude.

What has been the hardest part of this work, or how has this work challenged you?

Like so many of us, especially palpable in the caring professions, I am moved by the suffering of others. But you quickly must realize that the needs of others are inexhaustible, and meanwhile you are only one person. And one person who, by the way, also suffers, also has needs. It may sound basic, but I am baffled each day when trying to get a sense of proportionality on this: to keep a sense of possibility enough to keep trying to help others, to make a difference, while also being realistic about self-care to call it a day or go to the movies.

For me as a physician and administrator, the hardest part has been witnessing all the ways in which we actually design for failure and for bad experiences. Not just how broken the system is, but how collectively adept we are at keeping it dysfunctional. Of course, this is not just a comment about the healthcare system, but so many systems in general. Gratuitous suffering is the worst kind. But it is a singular joy of working in palliative care – especially at a place like Zen Hospice Project – to devote attention to upending this; the moment one decides to affect positive change is the moment this negativism instead becomes compelling, even inspiring.

How has this work changed you?

A few things come to mind. The first is my relationship to control. I’m increasingly enamored by the very natural lack of control that any of us has. In the past I heard my admonition to cede control as a sort of consolation prize, implying control was always preferable, just not always possible. I don’t see it that way now. For many reasons, I’m grateful for so much being out of my control.

Of course my take on mortality has changed. It doesn’t take long, working this field, to realize how entwined death and life are, how mutually inseparable they are. This fact holds myriad and invaluable lessons. Meaning, for example, wouldn’t have much of a role if we lived forever; we would not have a sense of preciousness without a time limit. I often ask people if they could push a button and live forever, would they? I’d say the response is running about a 99% “no!” What does that say about our supposed dread of death?

I am most thrilled with how this work has awakened me, especially to joy of the sense. Not just joyful sensations, but the joy of having ability to sense anything at all.

What goal do you have for the next 12 months?

At Zen Hospice Project, we’re working on a few fronts: direct service (caring for people and their families who are at the end of life), volunteer and professional education, and community engagement and advocacy. There’s a lot of work to be done, and we’re on our way.

I hope that within a year, Zen Hospice Project will be even further along: reaching and serving more people, gaining more partners, shifting policies and habits within healthcare and social sectors. And I hope the whole field of palliative care will come to be better understood and appreciated, and that resources will flow to suit. More sectors need to become involved in the development of palliative care, including the design sector. For all that is truly out of our hands, let us get very good at yielding. And for all that we can affect, let’s get very intentional and creative.

This interview first appeared on MariaShriver.com

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