Does MAiD target disabled people? Dr. B.J. Miller reflects on the challenges.

(Healthcare-reform advocate Dr. “BJ” Miller had a wide-ranging Zoom conversation this fall with FEN. In this second blog instalment, he opines on the profound challenges faced by disabled people; the pace of change; and for-profit hospice care. BJ’s 2015 TED Talk (over 14 million views) established him as a persuasive advocate for how we view and address death, and how we deal with disabilities and end-of-life issues. He is a founding partner of Mettle Health and co-author of A Beginner’s Guide to the End. Following are excerpts from his FEN interview. – Jay Niver, editor)

FEN:  Disability-rights groups like Not Dead Yet stridently oppose Medical Aid in Dying. Do disabled people need protection from, or equal access to, legal ways to end their lives peacefully?

BJ:  (Laughs), that’s right on, I hear you. It is a layered subject, so my answer is going to be nuanced. It’s likely both. I think the letter of the law is problematic: It does discriminate against people, say, with ALS, if they’re following the letter of the law. And I don’t think that’s intentional … it’s difficult. I mean, I don’t envy someone who’s got to draft the laws, the rules for a law like this. But my sense is that for the law and the system in which this is legal, they need to do a better job of refining the letter of law to include everybody who would qualify for it from a mental, intellectual-capacity standpoint.

But the idea that just because I can’t lift the tablets to my mouth to swallow the pills, that can’t be in the spirit of the law in my way of thinking … So, yes, the law could be refined, could be more inclusive.

And I think society and the medical system and bioethics also have to keep an eye out for how these individual rights play out at the social and policy level. I do think it’s true, having been in the disabled population myself, that we do receive signals from the public and from medicine in general that we are “less than,” that we lead lives that no one would want. There’s a very sad history of warehousing people with any sort of deformities, or anyone whose body doesn’t comport with the norms. There is a really dastardly history in this country, and in the West, around treatment of people with disabilities that is regrettable, and I think we’re fooling ourselves if we think that we’re past this.

It’s a little bit like the (racial injustice) argument: If you really think we’re past it, that is naïve. The discrimination around disability is so deeply sewn into our psyche that we’ve got some real work to do to if we’re really going to see ourselves in each other, and if we’re really serious about equality. Whether you’re disabled or not, that’s a big, important, ongoing conversation, and I don’t think society has matured all the way on that one.

And I do think we send signals to each other that are pretty rough, including as a disabled person where you just feel like people are kind of suggesting that you should just get off the planet. That is true! But I don’t think that’s the law’s problem. I don’t think that’s the fault of a Medical Aid in Dying law, per se. It can play into that larger, problematic dynamic if it’s not careful, but I don’t blame the (MAiD) law for causing or furthering that discrimination.

FEN:  Do disabled people need a national group to speak for them?

BJ:  The ranks of the disabled in this country are an extremely diverse population. There are people of every political stripe, and the degrees of abilities and disabilities are profound. It’s an incredibly heterogeneous group of people. So the idea that one organizing body, one organization could speak for all people with disabilities I think is just naïve. But I think that a single organization could take on and do a pretty darn good job promoting and articulating issues.

I don’t think that the average American citizen really has a clue about the issues that face a disabled person in this country. So I think there’s a lot of room for education and advocacy, absolutely. But whether a single organization can speak for the entire disabled community in the U.S., that seems a little far-fetched.

FEN:  You’re a staunch advocate for changing how we view and deal with end-of-life issues. Are you frustrated by the pace of reform?

BJ:  Absolutely! I mean, Jeez Louise, I have to smile when you say that. I don’t feel particularly powerful and I don’t feel that I’m moving needles much of the time. On some levels, I do think the conversation around Medical Aid in Dying is maturing, is less exotic a conversation than it was 10 years ago, and similarly I think the conversation on end of life, palliative care, the limitations of healthcare – I think those conversations have matured too. So in this way, I think it’s getting better.

It used to be 10 years ago, I’d tell people what I did: hospice and palliative care. They’d heard of hospice, and no one would want to talk about it and sort of walk away from you. Palliative care? No one even knew what palliative care was. We could make a story here that things are a little bit better as measured by the openness of the dialogue. But, do I see more substantive changes at policy levels? Do I see more communities developing end-of-life caregivers’ support programs, or building places to die? No.

(Progress) is incredibly slow, but I also have to remember that this subject didn’t start with you or me. It’s been around a while, and people who have gone before us have been dancing this dance for a long time. Things were even more backwards or less studied 20 years ago. There is progress, and it’s slow, agonizingly slow. But I also have this feeling that there can be a moment or two in time here, an inflection point at the policy level, at the social level, where things progress in a little bit of a leap …

FEN:  Hospice care has become almost entirely for-profit based, certainly in recent years. Has that affected hospice philosophy and services?

BJ:  In the last 15 years, the vast majority of new hospice organizations are for-profit. And that’s where almost all the growth is. That is just a true statement. And as it goes, the bottom line of a for-profit organization is a little bit different, and this of course is pressure toward volumes and mergers and acquisitions and efficiencies, etc. That can really erode the level of care. And some of these organizations are growing too quickly to retain, recruit, and train staff well, and it is a problem.

I’m sad to say, when I started in this work 17 or 18 years ago, you could unequivocally recommend hospice to someone. They may have distemper around hospice, or it may freak them out because it’s about death or other reasons that hospice is a scary enterprise, but once someone was in the folds of hospice, the experiences were almost uniformly wonderful. And almost everybody would say, “Why did we wait so long? I had no idea. These guys are great.”

That was always the refrain, and it made being an advocate for hospice much easier. So (now) I’m out on the stump talking about the empowerment of hospice and palliative care, and I’m sadly all too aware that someone might listen to me, sign up for hospice who hadn’t thought about it, and have a really bad experience. And that scares and saddens me greatly.

It’s true enough that the growth in the industry has come at some expense of quality, and it does seem that a lot of that breakdown does pivot around the for-profit versus not-for-profit status. Not entirely, of course. I can’t sit here and say for-profits are bad and non-profits are good. I’ve seen some really crappy, poorly run non-profits that delivered really spotty care, and I’ve seen some really well-oiled for-profits that have done great jobs.

I can’t dogmatically say for-profit is bad, but it is an undeniable observation that the growth in the industry is coming in the for-profit realm, and a lot of that growth hasn’t been a very good approach. People are having less-than-wonderful experiences. By and large, still, the satisfaction data around hospice is profoundly good, and people should generally have very good experiences.