Is MAiD Compatible with Hospice and Palliative Care? Dr. BJ Miller reflects.

(Hospice and palliative care physician BJ Miller sat down with FEN for a wide-ranging Zoom conversation last week, providing expert insight and opinion for an upcoming article in the fall FEN magazine. Dr. Miller’s 2015 TED Talk (nearly 14 million views) launched him as a knowledgeable and persuasive advocate for how we view and address death as a part of life, and how we deal with disabilities and end-of-life issues. “BJ” is a founding partner of Mettle Health, a co-author of A Beginner’s Guide to the End, and keeps a busy speaking schedule. Following are brief excerpts from his FEN interview. – Jay Niver, editor)

FEN:  As a physician who spent years in palliative medicine, and attending people dying in hospice, how do you view the growing acceptance of Medical Aid in Dying (MAiD)?

BJ:  In general, it sits fine … What I view to be pertinent to know (is), does this comport with my sense of autonomy? Do I know that there are pains that come at the end of life that can’t be treated, that can’t be mollified – in other words, there are sufferings that our bag of tricks won’t reach?

Yes, in so many ways, and I’ve been involved with patients over the years that really passionately wanted to have this option for themselves, and I’ve been in California before and after the law and seen the difference.

In a relatively narrow frame, I’m very supportive of the law and of the idea behind the law, the spirit behind the law. Where it gets a little tricky is, I wish the other pieces of the puzzle were advancing at the same time, like society’s sort of ethos in the way of thinking around the end of life, and how we treat people who are suffering or sick and their access to palliative care; supportive services that could help people who just don’t have access to it … I wish the overall picture, the social picture on this subject, were more advanced than it is.

FEN:  Why do you think aid in dying is becoming more acceptable?

BJ:  One thing that I think is happening: The conversation is maturing. It’s been in the ether for a while now, and so I suppose that it’s less of the shock value of the Kevorkian days, and more of a thoughtful conversation in various circles … It’s been around for a while, and you guys have been pushing it thoughtfully, so that’s one answer.

Another is that it’s no longer a secret, if it ever was, that the medical system in the U.S. has some severe limitations, some serious problems of its own, and that medical science can’t fix everything – and even if it could, it’s such a messy system that people struggle to get the magical care, even if it existed. So, another big piece of this is disillusionment with healthcare and with medicine’s capabilities.

I think a third major piece of the puzzle is just the volume of people who are aging; living with chronic illness, living with disability, living with things that on some level they can live with, but it’s getting increasingly difficult.

So, the idea (to them) is not so abstract. A lot of us just look within our own lives, our own family lives, and we see people who might actually say, and endorse the idea that, there are certain fates worse than death – and a lot of people are living those fates in this country. I think that also furthers the conversation and allows people to go a little deeper than dogma or just a basic, legal “cover-your-tail” stance.

FEN:  What are two things you would change, if you could snap your fingers and make them happen?

BJ:  I’d really love it in the U.S. if we could evolve as a society to understand that death is part of life – not this thing that robs us of life, not this foreign invader, this dark force, but rather this very natural part of life. It just is a package deal. I feel that a lot of our neuroses, our anxieties, stem from perpetuating this idea that life and death are somehow at odds, whereas you and I or anyone who has really worked close to the subject, it’s clear that this is a package deal.

That would be sort of the big macro, philosophical change. If we can bake that into our thinking as a society, I think we would be in a better place.

The second answer gets more at the structural and systems issues. I would love to see healthcare redesigned, taken down to its studs, and really redesigned from the bottom up. It’s been 115 years since the last congressional report on medical education set the tone for how medical school works, etc.

It’s so overdue. The world has changed … As a system, (ours is) one of the crummiest. We have incredibly talented scientists; we have incredibly talented clinicians. We have a lot of strength within that wobbly system, but the system itself is dramatically underdeveloped and woefully inadequate.