Hospice and palliative medicine specialists frequently speak about their field needing an image makeover. Dr. BJ Miller is poised to deliver it.
Miller, senior director of the Zen Hospice Project in San Francisco, knows most people regard hospice and palliative medicine with a sense of dread, instead of possibility. That’s not the way he sees it, and it’s not the way he’s lived his life.
As a 19-year-old at Princeton, Miller lost three limbs after accidentally coming in contact with a railway power line. That eventually led him to a career in medicine, and, ultimately, a specialty in palliative medicine. Now 45, Miller not only works at the Zen Hospice Project in San Francisco but practices at the University of California San Francisco Medical Center.
His 2015 TED Talk — “What really matters at the end of life” — has been viewed nearly 4 million times. He is also working on a book, called “How To Die: A Field Guide,” with the writer Shoshana Berger, to be published by Simon & Schuster.
STAT spoke with Miller at the Aspen Ideas Festival’s Spotlight Health conference, where he was accompanied by his dog, Maysie. This transcript has been edited for length and clarity.
Where are we right now with our culture’s understanding of, and acceptance of, hospice care and palliative medicine?
In my 10-plus years of practice I feel like there’s been marked improvements in terms of the understanding and the acceptance of hospice. Last year, 40-plus percent of Americans who died were enrolled in hospice. By some measures that’s great. But if you start looking at those numbers, fully a third of those people were in hospice for less than a week, which is really a problem for a number of reasons. So we’ve got a long ways to go.
The thing that’s risen more rapidly and is still poorly understood is palliative care, which is still confused with hospice. People are like, “Are they the same? Are they different?” But the number of palliative care programs in hospitals has tripled in the last 15 years, so that’s great.
The flip side is that if everybody who needed palliative care agreed to it, there’d be no way to serve them.
Right on. The last thing we’d want to do is do a [terrible] job. But personally, I’m starting to say, you know what? Even if the growth might be bumpy, people need to demand this on some level. And my feeling is, in the last couple years there’s a hunger to lean into these issues that I hadn’t seen five years ago.
So how do you help people understand both palliative care and hospice care?
When someone asks me the question, I say palliative care is a multidisciplinary pursuit of quality of life. It doesn’t say anything about death or dying. It focuses on quality of life. And not in a positive spin, turn-that-frown-upside-down way. It’s real. Anyone who does work in hospice will tell you that, yeah, sure, it’s about death, sure, it’s about suffering, but these are the foils for happiness, for beauty, for meaning making. That’s the full equation we need to get across to people. That somehow living and dying aren’t opposed. They’re absolutely entwined with each other. And that frame shift is really novel.
Palliative care is all about quality of life — a bunch of disciplines working together to support the patient and family, to eke out the best quality of life possible.
And you don’t have to be dying to qualify for palliative care.
Right. It’s irrespective of the clock. You just have to be suffering in ways that are unnecessary. In my clinic, I see patients who are years from death or maybe actually in remission or not even technically sick anymore, but who are really struggling with their identity and reentering society.
How common is it that clinicians don’t get it?
The resistance I used to see around palliative care is not nearly what it was. Most everyone I hear is asking for more of it now. And this is crass and generalized, and you still run into these docs who are completely anathema to the whole thing, but when I did my fellowship in palliative care in 2006, it wasn’t particularly competitive to get a spot. And I wasn’t some incredible student. Now, chief residents from the most prestigious programs are going into palliative medicine, so I’m seeing bigger brains head in this direction.
But you still have pockets of resistance, right?
There’s certainly a subset of the older guard that just needs to retire — at least around this issue. But I really believe that’s a small number.
Is their resistance from their medical training, or is it more around our general culture’s reluctance to discuss death?
Those two things feed off each other. In my mind, health care is really in a moment of reckoning. Over the last 150 years we were chasing cures, like “If we get to this, we’ll find a cure and then everything’s going to be great.” There’s been so many examples where, fine, we cured this thing, but we created another problem.
There’s such a batch of evidence that all of us as clinicians feel demoralized by that.
So I think the good news for everyone — and this is how palliative care relates to physician self-care — if that we can make this shift, then no longer do doctors need to pretend to be godlike and omniscient and omnipotent. Some of the sociopaths in clinical medicine love that. But for the most part it’s really hard to be asked to do impossible things. I’ve heard many people refer to, gosh, this is why I went to medicine in the first place.
Which is to actually care for people. And irrespective of whether you can cure them, and just serve humanity. Serve people in the best way you can.