Hospice and palliative care physician Bruce (B.J.) Miller has made it his mission to help people “live well in the face of death.”
A hospice and palliative care physician at the University of California Helen Diller Family Comprehensive Cancer Center and former executive director of the Zen Hospice Project, Miller speaks nationally about end-of-life care, including the benefits of hospice and palliative care. He was even featured in the Netflix documentary short film, End Game.
Miller has experienced palliative medicine both as a clinician and as a patient. An accident during his college years resulted in the amputation of one arm below the elbow and both legs below the knees.
His book, A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, co-authored with journalist Shoshana Berger, is designed to educate the public about the options and obstacles that patients and families encounter at the end of life.
Miller spoke with Hospice News about the ways our society’s understanding of death and end-of-life care need to change and how he hopes his advocacy work will help drive that change.
Of course, you’re a physician, but you’re also an author and educator. How would you characterize your personal mission in relation to the hospice palliative and end of life care fields?
It’s been wonderful to be part of a burgeoning field, and I feel very committed to growing that field for both the individual therapeutic work that happens with patients and families, but also at the systems level. It feels important that this subject break out of the narrow confines of a medical subspecialty. As important as that medical subspecialty is, it needs to be contextualized. This comes down to the human condition. This is not an anti-esoteric subject.
My own part in all this has been evolving over the last 10 years or so. There’s nothing inherently medical about our field. People end up in our medical system who are suffering in all sorts of ways, but suffering itself is not just a medical dilemma. For me a lot of the passion has been trying to wake up myself and others as to the nature of our reality, and our reality is in part to suffer and in part to die and in part to pursue quality of life. I’ve been trying to kind of explode the mission to include medicine, but not to stop with medicine.
For the last several years, I have been doing less clinical work and more education. And I’m doing less medical education and more sort of community engagement, more provocation, trying to get the public to think and feel, and to also engage other disciplines and economic forces.
What specifically do you mean by “economic forces?”
Obviously health care’s enormous financial quagmire and systems quagmire need a lot of attention and a lot of help. Certainly the economic forces of health care per se have a huge impact on society and the overall economy, and we know end-of-life care and serious illness have an outsize proportion of those costs. When you throw futile care or unwanted care into the mix, we’re potentially squandering a lot of resources, economic and otherwise, but we’re also squandering people’s time.
In the longevity economy with the millions of baby boomers who are aging, those of us who are able to live with disability and illness that years ago would have taken our lives, we’re all still here. Some of us can’t work. Some of us can’t find work. And yet we’re still alive, requiring services and wanting to participate. We have a huge cost burden. We have also a big chunk of the workforce that’s had to pull out.
So how do we engage private industry to begin to invent things for this cohort of people? And how do we get this cohort of people to participate in the economy not just as consumers, but also people who work and pay into the economy and create and generate opportunities themselves?
How do you feel that the work you’re doing helps to drive change?
I’m in a sort of inflection point. I think the last many years I have gone to sleep at night feeling pretty good that I am participating in a sort of provocation, trying to rattle the cages and get us out of our sort of day-to-day hamster wheel and into a wider frame, and to see to get in touch with our mortality, to get in touch with the preciousness of time. Essentially, I’ve just been trying to provoke people to think and feel about their lives and trying to get us all to name a reality that’s big enough to include all our experiences, including vulnerability and illness.
I’m trying to push back on the reductive forces of health care, because I’m trying to pull back in the productive forces of daily life, and to put some tent poles up for a bigger framework that doesn’t leave anybody out. If there was a critical mass of people queuing on all this, then more solutions will flow, more ideas will flow, more creative enterprise will flow, more beautiful products and adaptive equipment will flow, more people will go into palliative care and hospice work, and so on.
That’s what I’ve been trying to do these last many years, but I’m also at a moment where provocation clearly isn’t enough. I think we’re all pretty aware of some of our limitations now. What I am looking for is some clear direction to start offering people some pathways to do something about it.
It’s a time of change in the health care system. Can you speak to some of the most significant changes that you’ve seen impact end-of-life care in recent years?
When I did my fellowship in 2006, no one knew what palliative care was. There wasn’t much respect for the field, and hospice was considered this sort of light, non-medical thing off on the margins. I felt like we had to fight to justify our seat at a table in health care. I don’t feel that anymore. I still think there’s tons of confusion, but I do feel a much higher degree of acceptance and respect for the field.
In the same timeframe, I don’t think I have met anyone who thinks that the health care system in the United States is just hunky dory and everything’s great. There’s a more generalized awareness of the strengths and weaknesses and the problems that we’re facing as a system.
In some ways, the first patient of hospice and palliative medicine is really the health care system. We as a field are something of a corrective, to remind health care that no matter how diligent we are in our differential diagnoses and our therapeutics, suffering will still creep into the picture. No matter how hard we fight disease, at some point we will lose that fight. I feel that’s the message that hospice and palliative medicine bring into health care instead of an orientation.
People are trying to drive these principles deeper into health care training, and I see that happening. I think that is a wonderful thing. This sort of massive reorientation of the field is starting to take hold, and we’re starting to see its impact.
Are there aspects of the hospice and palliative care space that should be changing, but as of yet are not?
I’ll defer to some of our colleagues who are more savvy on the policy front than I am, but I would imagine there is a lot to be said for changing reimbursement. I would imagine that includes revisiting the [Medicare] hospice benefit. I would imagine that changes on the surface — large, broad-based policy changes — will be controversial even if they’re a great idea and will be disruptive to daily life in the trenches of this work.
I still detect tension between hospice and palliative care, and that troubles me greatly. I can’t believe that we as a small field can’t get our act together and really speak with one voice and appreciate the forces at play. A lot of hospital-based palliative care docs really have a very limited understanding of what goes on in the actual work of hospice, and that that bothers me greatly.
Internally, I think we need to get our act together, speak with a common language, and also set about really appreciating and understanding the work each of us does in our various settings.
You’ve spoken with your patients about forming a relationship with death as a part of their end-of-life journey. How would you describe your own relationship with death?
What I really mean is to have some relationship to the nature of death, so that it’s not this foreign invading force like we treat it in medicine. It’s a force within us. It’s not avoidable, and you can’t run away from it without running away from yourself. You can absolutely hate it but have some sort of relationship to it. Because then you have a dynamic you can work on. Then it’s not just happening to you. You’re not passive.
I clearly would sign my name in blood to the idea that death is part of life, not the antithesis of life. It is not the enemy of life, it is part of life. That reframing, I think, is a really powerful one and a lot can flow from it because once it’s in the mix, you can work with it. It doesn’t represent tragedy as much as just reality, and therefore is nothing to be ashamed of.
I’m trying to make space for us all to get to feel whatever we need to feel. This comes from my life as a disabled person. It’s a shame that we have to be embarrassed or ashamed or feel like a second-class citizen if we’re sick or if we die.
For me, my relationship with death starts with the fact that it’s part of life. It represents an enormous mystery about which I’m very, very curious. It represents a singular point in common that I have with every living creature that’s ever been. It’s something that connects us and unites us across time and space and wealth and race. I don’t have any desire to make death feel like it’s a pretty, easy, or lovely thing, but since it exists, I do want to work with it.