Patient Autonomy and Shifting Medical Ethics, with Dr. Barron Lerner

July 20, 2015

This week, Lindsay Beyerstein chats with medical ethicist Dr. Barron Lerner, author of the new book The Good Doctor: A Father, A Son and the Evolution of Medical Ethics. Lerner’s father Phillip Lerner was a renowned infectious disease specialist who practiced medicine during what many consider to be the golden era of American medicine. Being a generation apart, Barron and Myer Lerner where taught very different approaches to medical ethics, especially when it came to patient autonomy and end-of-life issues.

Dr. Lerner critically examines the ethical principles that his father operated under during his years in practice, and explores how these ethical norms have either retained their value or become outdated. His understanding of his father’s point of view was illuminated when he was forced to make decisions about what was in the best interest of his father’s own medical care, without the benefit of his father’s input on the matter. Barron’s unique perspective paints a global picture of all of the ethical considerations that come into play when practicing medicine as he wrestles with what he believes it takes to be a good doctor.

*Correction: In the introduction of this episode, Dr. Meyer Lerner is referenced as Barron Lerner’s father. Barron Lerner’s father is Dr. Philip Lerner; Meyer Lerner is Barron’s grandfather.

This is point of inquiry for Monday, July 20th, 2015. 

Hello and welcome to Point of Inquiry. A production of the Center for Inquiry. I’m your host, Lindsay Beyerstein. And my guest today is Dr. Barron Lerner, a medical ethicist and internist with a doctorate in history. He’s the author of the new book The Good Doctor, A Father, A Son and the Evolution of Medical Ethics. His father, Michael Lerner, was a legendary infectious disease specialist during what would come to be seen as a golden era of American medicine. Baron and his father came of age at very different times in the profession’s history. Meyer was fiercely devoted to his patients, very good at his job, and a staunch believer in a doctor knows best ethos. Baron was trained in an era where patient autonomy became the defining value in bioethics. The book draws on Myra Lerner’s extensive diaries, which constitute a unique historical window into how a mid century doctor thought and felt about his work. Baron also explores medical decision making in his own family, including a heart wrenching choice about whether to treat his father’s infection after he became profoundly disabled by Parkinson’s disease. Barron, welcome to the program. My pleasure. You’re a doctor and your father was a doctor as well. How have medical ethics changed between his era and yours? 

Well, I think the biggest change between my dad’s era and my era has to do with a doctor patient relationship. In my dad’s era, particularly the nineteen 50s and 60s and early 70s, the doctor is really king of the ill. And doctors made most of the decisions for patients and were willing at some point in time to lie to patients, give out bits and pieces of information to different people, all to get the patients to do what they thought was best, what the doctor thought was best for them to get better. And people were comfortable with that, although there was always a little bit of. There were always some patients who didn’t like that arrangement. And then what burst forth really in the 1970s and 80s was this new type of bioethics relationship where patients and families became the decision makers. And so in the in my training in medicine, that’s just when this new type of decision making was occurring. So I grew up in an era in medicine where we were told patients had the right to decide. And doctors, even if patients weren’t necessarily doing what we thought was the right thing, we needed to rely on their wishes. So that was a huge change. 

What were some of the historical factors that led to this surge in the idea of patient autonomy over doctor benevolence? 

There were a lot of historical factors. In general in the United States, I think it had a lot to do with the changing relationship of people to authority figures. So if you think about the 60s and 70s, you had things like the civil rights movement, you had protests against the Vietnam War, you had feminism. And in all of these types of social movements, there was questioning of people who had been in charge for a long time by people who had been oppressed, in a sense, for a long time. And these sorts of changes moved over into medicine, really beginning, I would say, in the early 1970s. And they were propelled by a series of scandals that had occurred in medicine, specifically where doctors had done things that were really inappropriate. And here I’m thinking about things like the Tuskegee scandal where poor African-American men in the South were left untreated for syphilis and to see actively deceived by doctors and the public and the media began to say this arrangement where we give doctors all of this independent decision making power about our lives has to change. 

It’s interesting, though, because you write in the book about how your father’s patients expected him and were, in a sense, paying him and looking to him for a kind of authoritarian rule. And if he’d been more like what we expect a doctor to be today, more collaborative, more egalitarian, he would have in some sense been letting them down. 

Oh, absolutely. You know, they the culture changes over time. And certainly the expectation of most patients in that era was that the doctor was in charge and patients liked it because it took some of the responsibility away from them. So if you think about being sick, certainly seriously ill, it’s hard enough just being sick and taking your treatments, let alone having to do research yourself about your disease and make all these complicated decisions. So there were lots of people at the time who were glad to submit to the doctors authority, but things changed in society and people began to say, you know what, their downsides of not being involved in the management of your case because doctors are not perfect, they’re flawed, and sometimes they make pretty bad decisions. And so it behooves you as a patient to get more involved. And that’s a big part of the reason things changed. 

And even when they make good decisions, they may not make the decisions that you would have made because they have different values and attitudes and background knowledge. 

Exactly. And, you know, I think some of what patients wanted and desired were submerged for many years because they just did what the doctors told them. And in some of my research, not particularly for this book, but some of my research looked at patients who actively. Challenge their doctors and in the post-World War Two era. And there was a subset of them who said, I know you’re telling me to do this, but I don’t want to do it. And there was there was some interesting conflict even in that era. 

What kind of things were people decide to defy their doctors about? 

Oh, a lot of what I looked at was cancer patients of some of them didn’t want to get the type of surgery that the doctors had recommended. Others didn’t want to get radiation treatment and that sort of thing. And it could be as as minor as X-rays and blood tests and things like that as well. So I think in general, there were some patients who were not necessarily going to go along. Different patients refuse different things you see in the book. 

There’s a very poignant scene where your father literally throws himself over an old an older female patient of his who’s suffering from arthritis and high blood pressure and a lot of disability and misery at the end of her life because she’s been discovered pulseless at her hospital room. And if others convinced that it would not be a good idea to resuscitate her, and yet she doesn’t have a DNR. When I read that, it struck me as a really heroic thing to do. But you have if you have a lot of questions about whether that was the right thing to do or not. Can you tell us about those? 

Yeah, this is the story that I start the book with, which is a sort of a humdinger occurred in 1996. And the outlines of of the story are what you say. And basically, this was a patient my dad was involved in the care of. He wasn’t the patient’s primary doctor, but she was basically dying of severe rheumatoid arthritis, plus a series of very serious infections and did not have a do not resuscitate order. So strictly speaking, she was supposed to be resuscitated. But doing so, my father felt, would have been not only medically inappropriate, but also inhumane. 

And I first heard this story in 1996, shortly after it happened. And at that point in my career, I was a young historian and ethicist and had done a lot of research myself on the importance of informed consent, on the importance of empowering patients and sitting on an ethics committee that talked about those issues all the time. And here was my own father committing, at least at first glance, a complete violation of legal and ethical codes as construed in that era. So what was fascinating for me, obviously, as you can imagine, as I wrote the book and then understood that episode in the larger context of my father’s career and medicine, more broadly, I came to revisit some of my initial misgivings about it and viewed it in a sense as a courageous act, something that most doctors wouldn’t have done, I think, because they would have been too afraid of the possible legal ramifications. And yet he physically put himself on top of the patient to prevent what he thought was an inappropriate resuscitation. And indeed, the more I thought about it, it would have been an inappropriate resuscitation. 

I mean, it just seemed to be my overwhelming instinct was that it was it would have been futile care that you’ve got a woman who’s so sick and so old. Why would we assume that resuscitating in that case when the prognosis would likely be so poor? I mean, just the likelihood of her coming back in any kind of cognitively intact state, even where she was, would be so low. Plus, you know, breaking all the ribs and ripping off a little skin she had left and all this. Why would we assume that that was something that you had to opt out of with a DNR rather than saying, well, no reasonable person would want to be mutilated before probably coming back into cognitively reduced state and then die? 

Well, this was one of the results. Most people, I think, would say unfortunate results of the new patient autonomy and the new emphasis on forms and informed consent, which was you needed to let patients make bad decisions even if you thought they were inappropriate or not indicated if a patient was offered something and wanted it. Strictly speaking, from a ethical and legal perspective, you were supposed to do it. And this was exactly one of those cases. 

I would agree with that. But it just seems like she didn’t opt in. She’d. Right. 

Didn’t say was she wasn’t why those people would give me everything. Doctor, I want I want you to pull out all the stops so I can have every last second of existence. She was someone who was already complaining that she was miserable all the time and she just didn’t seem to be a good medical candidate for this extreme intervention that they wanted to foist on her. 

Yeah. Well, I think that that was part of what informed my father’s choice, that that that was what he determined very much. And he felt that he knew the patient. As well as anyone at that point and that he had made that decision, unfortunately, for a series of reasons, I don’t know completely all the forms hadn’t been filled out and this hadn’t been put down on paper. So it was a momentary decision of, you know, am I going to sort of stick to the strict legal standards here and look at the paperwork? Or am I just going to do what I think is right? And he decided, obviously, to do the latter. 

But why is resuscitation the default option, I guess, is what I’m asking for, that you have to insist that you don’t want it even when the prognosis is really poor. 

This is a quirk of the way that the laws and the in our laws got written in this country. And it reflects, I think, a lot of things. I think it reflects our national obsession, we might say, with doing everything to prolong life as much as possible, something that you don’t necessarily see in other countries. And that was the default option here. And the DNR laws were written as such, saying resuscitation is what happens in less. You opt out of it. And you’re right, the law didn’t have to be written that way. But again, I think it had to do with the historical context in the context of DNR laws with doctors making life and death decisions for people. And the best way to avoid doing that in the future was to assume patients wanted everything done. And the ramifications of that, as you’re suggesting, have been far and wide, really. 

What do you think your your father would make of that, the state of medicine today? Do you think he would? If he were sort of surveying what’s going on in American medicine, would he say that progress has been made with since his day ethically or would he say that we’re backsliding and going soft? 

That’s a great question. He struggled an awful lot with this for several reasons. He did not have his head in the sand. So he understood medicine was changing as the ethics of medicine were changing. One of the reasons he understood that with his own son. In other words, me with I was getting advanced training in ethics. So it was hard for him to ignore how what I was learning seemed to contradict so much of what he had understood to be ethical medicine. So he knew about it. And in a sense, part of his career. Later on, he did start to do a better job of communicating with patients and asking their preferences. So he was moving along that spectrum. But having said that, he never, ever, ever was comfortable with a perspective that looked too much to con broad concepts like autonomy, justice and things like that that he felt were too like egghead like, and that these were people who were not doctors who sat in rooms and told doctors what to do. He very much manifested that attitude for his entire career and his life, even though his own son was sort of one of those people. And as such, he continued to stay until the very end. That a good doctor. That’s the title of the book, a good doctor who put his patients interests front and center and did whatever the doctor could do for those patients still was the best decision maker, ultimately. So that’s where he sort of settled out toward the end of his career in the end of his life. 

And doctors are in the same decision making position a lot of the time that your father was for his patients. They’d been priced out of knowing three generations of the family and everything about somebodies work and housing and reproductive life and everything like your father did. 

Oh, it’s it’s much, much harder these days to know this sort of stuff my dad did. And, you know, not to go into incredible detail, but he both due to the amount of time he spent doctoring, plus the logistics of his career, which let him go see his patients in a very interact with his patients in a very intensive manner, knew everything about his patients and family. And that is a huge challenge. Today, I, as a primary care doctor, I, I worked in the outpatient setting and I get 20 minutes per patient and I desperately struggle to make five of those 20 minutes. Not about the person’s back pain. 

Right. Partly. I can’t do anything about it. And we’ve talked about it 100 times, but partly because I really want to get to know the patient and I want to know about their family and I want to know about their values and their wishes, because somewhere down the road, we’re going to have hard medical decisions to make. And I want to be able to help them with those decisions that I want to get to know them like my dad did. But it’s a real challenge these days. 

Your dad eventually developed Parkinson’s disease and you had to make some tough choices about his care. Can you talk about how you approached that? 

Yes. So my dad developed Parkinson’s. He probably had it for years before he would even go to a neurologist. I mean, he was a typical doctor in the sense that he was a horrible patient. Yeah, right. And I’m the same way that we all are. Partly because we’re in denial, partly because we don’t like to appear vulnerable. 

So he finally did get a diagnosis of Parkinson’s disease about 10 years before he died. And, you know, initially was was sort of doing okay and was still traveling and was still working. 

And by about 2006, he really had to cut back on the stuff he was doing and going into the hospital, those sorts of things. And he gradually, as unfortunate most Parkinson’s patients do, gradually deteriorated physically and also mentally. So he had we never really were able to characterize what was going on with him. But the best way I would say is that his mental status was clouded. He did not have dementia, but he it was very hard for him to stay awake and engage in an ongoing conversation. He said that that was his existence. And eventually he just was too much of a burden. My mother had to put him into a nursing home. And once he got there, you know, once you’re in an institution, you’ve got to make some decisions about how aggressive you’re going to be. Right. So we had to talk with him about this exact sort of thing. So based on what we’ve talked about so far in that story about him throwing his body and the patient. One would have imagined, and I certainly did that when I asked him, you know, would you want any sort of heroic measures? Would you want to go back to a hospital? Would you want antibiotics? Would you want to go on a ventilator given your current situation? He would have said, what, are you crazy? Of course not. I’ve been telling you this for 50 years. But he did. And that was a big surprise. And to make, you know, to make a complicated situation relatively quick, he basically said he would be willing to do that. He would be willing to go to a hospital. He would even be willing to go into intensive care unit. And I pushed back a little bit and he said, yeah, sometimes that can work and you could try it. And that sort of thing. 

So my family and I were in a difficult situation because he was giving us the exact scenario that was opposite of what we expected and what we were planning to do. He was saying it was OK to be aggressive. And we entirely expected, based on his life until that point and his whole medical philosophy, that that was entirely the opposite of what he really wanted. 

And do you think he just got there and found that life as he was was better than he expected? 

I don’t know. I tried to sort of pursue that. And again, you know, part of me wishes I’d had this discussion with him a little bit earlier. I don’t know just how sharp he was by the point we were having the discussion. I mean, he definitely at moments of lucidity and if you kept him awake, he could converse with you in a reasonably coherent way. So. So it’s hard to know. And he didn’t really articulate that ever. He never said anything like. Yes, I know. I used to think the opposite. But now I’ve gotten to a point where I cherish every moment of life. He never and quite frankly, if it’s if he’d said it that way, I think we would have probably made a different decision than what we did. But he never said that. He just said it was okay. 

But when we came into the nursing home and saw him, it looked like the exact sort of thing he never wanted. He was in a wheelchair or in his bed. One hundred percent of the time, he couldn’t walk anymore. And for folks who’ve been to nursing homes, you often see patients sitting in wheelchairs and their heads are basically down to their torsos. They had just hangs down. They fall asleep. And their quality of life, for all intents and purposes, seems to be unsatisfactory. And that’s what we saw with him. And eventually, I guess I’m giving away a little bit at the ending of the book. But, you know, eventually we decided that being aggressive in his case was so contradictory to everything. He’d always told us that we had decided that, you know, if and when he got sick to just be supportive and treat any discomfort that he had. 

So in a sense, his life served as its own living well that he was pre committing for himself, by the way he lived his life. 

Yes. And, you know, I I can understand why people might object to this sort of thing. I mean, from a strictly bioethical perspective, and there’s lots of bioethicists have written about this issue of precommitment and it’s very complicated. But, you know, why do you ask patients their preferences? If you’re not going to abide by them? Right. That seems to sort of throw the whole bioethical argument in the garbage. And there we were doing it. 

But things are complicated. And as we like to say in bioethics, every case is different. And in this particular case, I would certainly never argue that in general you should be overruling the wishes of your loved ones. 

But in this particular case, we felt after lots of soul searching, that we were doing the right thing and ethical dilemma that a friend of mine mentioned the other day, he said gerontological worker. And he he went to a nursing home. And he was really he was talking about the use of antipsychotic drugs to treat sexual acting out in patients with dementia. He was really horrified because people wanted to use these drugs to basically, essentially kind of chemically control people who, according to the people who were treating them, were doing things that they would not want themselves to have done. So this one guy who was a big, big shot community leader, very religious, very important, his town. But he’s in this nursing home now with dementia and he’s still married to a woman who’s competent on the outside. But he is going around having sex under questionable consent conditions with various members of his nursing home. So he’s kind of a danger to other people and he’s definitely a danger to his own sense of what he would want to be. And my friend was, how could you be medicating these this guy? He’s not sad. He’s not hurting. You shouldn’t be doing this. But the people who are taking. Carabine were saying, well, you know, we’re preventing him from being something he never wanted to be. He never would have consented to be. 

Yeah, that’s a that’s a tough issue. You know, certainly part of what you’re experiencing there. You know, you go back to the seminal sociological studies by Erving Goffman in the 1950s and 60s where he talked about total institutions. 

And, you know, basically the gist of his argument was that when you put not only ill people, but prisoners and other people in institutions, the needs of the institution take precedence over the individual attention to specific people, because otherwise you can’t run the mission and the inmates take over in a sense. And to me, you know, part of the argument is, you know, you can’t run a nursing home if you got people like that guy running around and having, you know, some we have the word rape to what he’s doing. 

So, you know, now or at least potentially raping this guy was, you know, with people actually really clear up, any really great ones were. And yes, for sure. 

And you know, what you always want for these folks is least restrictive alternatives. Right. Is the reason that jargon exists. 

And what you want to do for these people is you you want to be as unrestrictive as possible, but you have to think about the safety of other people. 

And you have to you know, the more tricky theoretical question is, you know, is he behaving like a different person? And, you know, to the degree, I suppose that he is not being the person he is, that some type of change in mental status. And the notion of using some gentle medication to control that does not seem that unreasonable to me. 

I mean, it seems like something I would want for myself. Like I would never become the sort of person that disregarded all my previous ethical beliefs about consent and agency of other people and stuff like that. 

Exactly. And it you know, it’s it’s an interesting analogy because, you know, I think we’re all very reflexively trained in autonomy. 

And our first thought is for this individual. And what right do we have to forcibly medicate such a person? But then you contextualize that and you think about the situation where he is. And indeed, you know, if you want to, you know, play around with it, what would you know if you could give him insight magically and tell him what he is doing? What would he have said to you? And one could very much imagine in a case like this, much like my father’s case, I think where they magically restored person would say, you know what, I’m acting like I never acted before and it’s okay to overrule me. Right. So I think they’re actually pretty analogous situations. 

Do doctors ever talk about gerontologists or primary care? Doctors ever talk about situations like that? Like under what situations? If you started becoming a different person with dementia, would you want to be controlled or sedated or things like that? 

Not enough. You know, I think so much of the attention has been put on DNR orders and end of life decision making. You know, if such and such happens, how aggressive do you want us to be? And with good reason, because those are always the crisis moments. 

I think the discussion could profitably be broadened to think about what one might do if you become a different sort of person. I mean, one of the sort of amusing ways when I when I wrote about the story with my dad, you know, I was joking around with some people and they were saying, well, now you not only need a living will to say you don’t want aggressive care, but you need a living will for your living will to say, well, if I tell you that I do want aggressive care, ignore that. 

I still don’t want aggressive care. Right. You can do this at infinity, right? Yeah. 

But but having said that, it’s at least a fair question to ask. I mean, it’s very theoretical. And again, it doesn’t solve the problem of someone particularly who’s very insistent at some point to say do this or don’t do it. And I don’t care what I said before. And, you know, I think to the degree that they can articulate why they’ve changed their mind and how they’ve changed their mind, then you’re more obligated to listen to them. And again, part of what I think we relied on in my dad’s situation was to say, sure, he was saying something different, but he wasn’t ever able to tell us. 

Why have you been following the case of Henry Ray, who’s more on these sort of to logical ethical puzzlers today, I guess. 

But the state legislator who was charged with rape for having what he maintains was consensual sex with his wife, who had really severe dementia. 

What do you think of that case? 

I think it was incredibly sad. An incredibly moving and incredibly difficult for so many reasons. Yeah, you know, I think we’ll talk about a topic that we never talk about, which is, you know, sex among older people, let alone demented people. 

Yet that is clearly outside of the nursing home. It must be a topic and needs to get discussed more. And I’m probably as guilty as any doctor of not bringing me this sort of thing up. And, you know, in this particular case, I guess I would say I’m glad at the end of the day that charges were not brought against the man for doing it. One doesn’t know what is. There’s no way to know what his wife was experiencing. And certainly the notion of her feeling violated or vulnerable in any way makes me extremely uncomfortable. But, you know, one way to look at this, I think, is the you know, the exceptional case should not make the rules. So, you know, I think in general, the idea of putting in rules and laws prohibiting this sort of thing is not such a great idea. And the best we can do is try to anticipate it and work in the individual situation. And, you know, to to try to understand it best you can. Maybe I don’t know if she was in any sort of situation to be able to give you any information about what she had experienced at all. 

But I don’t think she could tell. She couldn’t talk. So, yeah. So there you’re not going to get much help in that sense. You know, I think you’d want to have a discussion with capacitated person and understand their exact motives. And I think you would not want to do it in the way he did, which I guess was secretive. I mean, one, have a discussion about a way to do this sort of thing that’s transparent and being done in the most respectful way. 

But is it secretive or is it just private within a marriage like anybody? 

Yeah, no, I understand that. It’s you know, but once you’re in a public facility again, I mean, it gets back to, I think, the running the institution. And I think, you know, it’s a dangerous precedent to not have some type of way for the institution to at least monitor this sort of thing. Yeah. To say we’re going to try to facilitate it as best as we can. But, you know, I think the idea of putting sex aside is something that people can just do in a nursing home and have all the privacy they want is entirely different than what you do in nursing homes for everything else. So that got to be some type of an effort when these situations arise to have some type of a policy that respects privacy to some degree, but also respect for the safety of the people involved and and they need to run an institution. 

Do you think that there’s any place for sort of sexual living wills in the sense where people talk openly about how they how they would feel about having sex in an established relationship or not in an established relationship if they seem to be enjoying it? I mean, I think it was pretty well established, or at least there wasn’t a lot of counternarrative in the media that this woman was experiencing any distress. She was really impaired, but she seemed to be I’m just assuming that she was and her husband’s written the claim that she was enjoying this. And it makes me really concerned because if you allow this, I mean, she was way more impaired than your average falling down drunk person is way more apparent than your average toddler. Yes. I mean, at least toddlers can say no. Yeah. Even if they don’t have a lot of power. But you’ve got someone who seems to be enjoying sex in some sort of consensual physical way. Right. But at the same time, doesn’t have the cognitive capacity that we look for everywhere else in society. 

Yeah, I mean, that’s a really hard question. I don’t know. It’s you know, it’s hard enough answering the question. You have a stroke. You want us to put you on a ventilator. And that, to me, is an easy question compared to if you’re moderately demented and your spouse wanted sex with you, that OK or not? 

I mean, I can’t even go could go to that place in my head at the moment and think about that. And that’s not to say other people wouldn’t. 

And I could see justifications for it. If you know, particularly, you know, let’s say this couple in particular was very active sexually, even when she was at home and mildly demented. And that was something that was an established part of their relationship. You know, I think in that situation, maybe there is a way to elicit that type of information in advance. But, you know, at some point, some of these questions become so theoretical. And then, you know, how can you put yourself in those shoes that I’m not sure, you know, a sexual living will is really an answer to that sort of question. 

Do you think that it should be answered in terms of nursing home policies, or do you think the criminal justice system is the right place to be handling it? 

Look, I think, you know, this is a. Opportunity for nursing homes and other institutions to start talking about this openly, and I don’t have a solution, but, you know, I think that at a policy level, there are things that can be implemented to try to respect this type of decision. But to do it in a safe and monitored type of setting, I guess, you know, I don’t know what exactly that would be and how you would do it, but you can’t ignore it. 

Nor do I think putting this in the legal system is not a great idea. 

You don’t want cases like this coming forward and judges having to decide it. It’s really something that’s an institutional question and an ethical question. 

A general question of, you know, making sure that your own wants and needs and priorities are taken care of at the end of end of life. 

What would you advise people start doing now, you know, when they’re mentally competent? What kind of documents should they be writing? What kind of conversations should they be having with their loved ones and with their doctors? 

Yeah, I, I’m a I’m a big thing. And even though that limitation. I’m a big fan of advanced directives, whether they’re living wills, but particularly health care proxy. 

So, you know, in all states now, you can fill out some type of form that lets you designate someone else as your health care proxy to make decisions for you when you no longer can. I strongly urge my patients not only to fill out that form, but to have a meaningful discussion with their proxy and other close people in conjunction with filling out the form. I also try to get my patients to talk to me about these issues as their doctor and when possible for me to document that sort of thing and get the information out there as best as possible. Now, you never can anticipate exactly what a particular situation is going to be. But, you know, I’ve had patients over the years who have given me very definitive types of statements and a very good sense of when they would and wouldn’t want aggressive treatment that can very easily be translated into action or inaction in a clinical setting. 

And the fact that it was documented helps. That doesn’t always work and you can always anticipate everything. But I’m still a fan of trying to do that. 

And and, look, the more people you tell it to, the better chance you have of having your wishes honored when the time comes and you recommend that people sort of start broaching this with their loved ones, like their loved ones haven’t said anything about it. Is there sort of a point where you should be having the death talk on the way parents have the sex talk with their kids? Should kids be having the death talk with their adult parents about. So, hey, well, you’re well and can articulate these things to me. What you want me to know? 

I don’t see any downside to that. I think, you know, it’s a little morbid. Maybe for some people. But, you know, you could and each one of us could be in a car crash at any minute. Right. 

You could be 40 years old, 50 years old, 10 years old. And if you haven’t elicited the information and that person and there’s decisions to be made, you’re going to be kicking yourself. So, you know, just because someone’s 50 years old and healthy and you’re 22 years old and you decide to have that discussion with them, it’s only going to say I expect you to be dropping dead in the next week. It’s like if and when something happens, I just want to know. And most people I find to have some opinions about certain things and a lot of it is very similar. It’s often if I can no longer meaningfully interact with you and I don’t know who my family is and I don’t want to eat by might and I can’t eat by myself anymore. Well, maybe that’s the most common thing people say. And again, if you’ve got that documented somewhere on paper through verbal conversations among many people, you’re a step ahead when and if the time comes. There’s just been some articulation of the sorts of things that you should and shouldn’t do. 

So it’s not really I mean, I don’t think it’s more, but I think it helps people to, you know, live more fully in the present days, just know these things about the people they love. I mean, it elicits what’s truly important to them. Right. And you can use that information all your life to live better. 

Exactly. Well, that’s all the time we have. Thank you so much for coming on the show. OK, I’ve enjoyed it very much. Thank you. 

Lindsay Beyerstein

Lindsay Beyerstein

Lindsay Beyerstein is an award-winning investigative journalist and In These Times staff writer who writes the blog Duly Noted. Her stories have appeared in Newsweek, Salon, Slate, The NationMs. Magazine, and other publications. Her photographs have been published in the Wall Street Journal and the New York Times’ City Room. She also blogs at The Hillman Blog (, a publication of the Sidney Hillman Foundation, a non-profit that honors journalism in the public interest.