An interview with Stuart Youngner

Recently we sat down with Stuart Youngner, who received the 2021 Lifetime Achievement Award from the American Society of Bioethics + Humanities.

What motivated you to study medical aid in dying?

It’s a complicated question. I was interested in psychiatry and I was in psychiatric training when the first intensive care units opened in hospitals in the United States. They weren’t always there. So this was the late 1960s, early 1970s. We started having intensive care units because the positive pressure ventilator had been developed, dialysis and drugs such as vasopressors. And so hospitals felt they needed to have special units with specially trained people to run them, to deal with exceptionally sick and unstable people. And I was interested in what was called consultation-liaison psychiatry, in which psychiatrists work in the medical and surgical parts of the hospital and deal with issues that arise there.

I was there when the first intensive care unit opened, and I was very interested in how people dealt with machines attached to their relatives or attached to themselves or staff dealing with patients who were attached to machines, because it had never happened before. And I spent time hanging around in the intensive care unit and I was there when all of a sudden they had people on ventilators and they couldn’t get them off and patients didn’t want to be on them anymore. And there was no law, there was no hospital policy. There was no regulation.

There was no nothing telling you what you could do or not do, and why. And so the first major discussions about end-of-life issues started at that point. The heads of the pediatric, adult, cardiac and surgical  units decided that they wanted to talk together to try to figure out how to behave. And they formed an Ethics Committee. And since I was around and interested, I got on the Ethics Committee, and the issues that we were dealing with were end-of-life issues.

I began seeing patients who didn’t want to stay alive anymore and wanted their ventilators turned off or their dialysis stopped. And then I saw a few patients who actually weren’t on machines, but didn’t want to stay alive anymore. I started making observations and then began reading and writing about it. The personal reason is that my mother had Hodgkin’s disease and she died over a long period of time. She was sick in my childhood and it was always an issue that was around and not very well discussed in my family. 

Over the course of your career, how has the conversation around medical aid in dying changed or evolved? For example, with your students? 

When I first started, I’d ask people what they thought about stopping treatment and it wasn’t a common thing then. Students were very leery of it, as was our society, until we had a long public discussion that went on over decades with court cases and all kinds of public discussion. And more of my students had lived an experience where a grandmother or an aunt or an elderly neighbor was caught in the jaws of medical technology, and it wasn’t a happy thing. In the 1990s when I asked “Has anybody ever experienced this?”, more hands started shooting up.

I would venture that it’s very hard now  to find anybody in our society who hasn’t known somebody who ended up this way. And then the issue of physician aided dying really came up in the public imagination in the 1980s with Jack Kevorkian. There was a lot of media attention about it. Through him the issue was in the newspaper all the time.. And then Oregon passed a law. So now it wasn’t just theoretical, but there were places where doctors could actually do this. And the literature about it increased exponentially. It’s really interesting because my students are almost uncritically in favor of it now. It’s just that society has shifted. And the polls show that between 55% and 70% of people are in favor of it. But I think among young people it’s much, much higher than that. I’m in favor of it but always wasn’t. I, too, have evolved.

What is the significance of medical societies across the U.S. continuing to adopt neutral stances on medical aid in dying? What has facilitated those changes? 

There’s something that is not exactly a philosophical term, and analytic philosophers tend not to think this way, but I think it’s incredibly important, and that’s what I call “lived experience.” And you can read all you want to read about people’s right to turn off their ventilators or stop their dialysis. And you can couch it in terms of autonomy and beneficence and so forth. But if you’ve experienced it you know, in a different kind of way, what it really is and what it is like. And I think that the lived experience of more and more people, has made this just a more reasonable thing in this circumstance. It’s a reasonable thing. It’s not a reasonable thing in all circumstances, I’m horrified by, the story in the New York Times about this number where anybody can call and they’ll give you ways to commit suicide. No questions asked, that’s horrible. That’s not the right we’re fighting for, because we know that a teenager who breaks up with her boyfriend or his girlfriend, and then calls and says, “Help me commit suicide,” and you do, that’s just not the way that’s not the medical aid in dying that we’re talking about here. 

Doctors are experiencing this more and more in their practice and their patients are asking for it. And they’re part of medical societies, and they go back to those meetings and they’re on committees. And there are struggles within all, even the AMA has had an internal struggle about it, and it’s not monolithic in its view. And of course the AMA, I don’t know, represents 10% or 15% of doctors. So it’s certainly not a monolithic position for doctors, but it is still held up by society as somehow representing doctors, but more and more societies are neutral or approving of it. And I think that’s just going to continue. I think that the people who are trying to hold back the rush, are just going to lose. Again, that doesn’t make them right or wrong. But it’s just a fact that it’s crumbling. That the resistance is crumbling. And I’d like to think it’s because people read papers by people like me, but that’s really not what it is, what it really is, is lived experience.

You were recently recognized with a Lifetime Achievement Award from the American Society of Bioethics and Humanities, what makes you proudest about your work? 

One, I know that I know for sure I’ve done and accomplished, and so I’m proud of it and it’s not I hope it’s true. And that is teaching students and mentoring young faculty and students. It’s just been a joy. And I know that I’ve made a difference in people’s lives that way. I like to think that my work, which has primarily I guess at least a major part of my work, has been around end-of-life decisions. I hope that my work has contributed to what I see is a progressive evolution towards people being able to make decisions about their own lives, rather than other people making decisions for them. It’s harder to have a one-to-one… “Well, I did, I wrote this paper and this happened, or I did this and that happened.” But I do feel I was part of the movement from the beginning, back in the seventies.

I work with a lot of great colleagues and still do. My work with Compassion & Choices is wonderful. And so that’s been a really great part of my career, to be part of something that I believe in. For me, life is too complicated these days. Most of the political issues that are out there are so complicated that I have no…like our economy. Should we pass this? Is it a good thing to pass this bill or that bill?. And I don’t really know, but with this, I thought I really knew what the right side was and it was relatively straightforward to me.