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Join us as we welcome psychiatrist Lewis Cohen to discuss his book, Winter’s End: Dementia and Dying Well. In this episode, we explore the ethical dilemmas, legal challenges, and emotional impacts surrounding life-shortening options for dementia patients. Drawing from the perspectives of over 100 experts, Lewis delves into the complexities of patient autonomy, the role of palliative care, and the cultural differences in approaches to this taboo subject.

Lewis Cohen is a psychiatrist.

He discusses his book, Winter’s End: Dementia and Dying Well.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. Today we welcome Lewis Cohen. He’s an emeritus professor of psychiatry at both Tufts University and the University of Massachusetts, and he is a palliative medicine researcher. We’re going to talk about his upcoming book Winter’s End: Dementia and Dying Well. Lou, welcome to the show.

Lewis Cohen: Thank you for having me, Kevin.

Kevin Pho: So let’s start by briefly sharing your story and journey.

Lewis Cohen: OK. Well, March 2020 is one of those notable times for most people, because that’s of course when COVID burst out on the scene. But it was especially notable for me because that was my 70th birthday, and I had decided and had prepared to retire from my position at a hospital where I’d been working for the previous 35 years. And already a year or two before that happened I started work on this book that I’ll be telling you a bit about.

But as I thought about retiring, I realized that a big piece of it was because I felt as if cognitively I was slowing down. I felt also as if my interest in keeping up with medicine was beginning to lag. And I’d had a very fortunate career, I’ve not been somebody who’s been tagged with malpractice problems or run into some obvious problems taking care of my patients over the years, and I didn’t want to get into that kind of problem.

Also felt, just as it happened, that a lot of the senior people at my hospital were retiring, including the chairman of my department and including the president and so on, so I did not have people backing me up in case I was going to get into trouble.

But I got curious about this mental slowing that was going on, and decided that the book that I wanted to write about was related to end-of-life issues for folk who have dementias.

Kevin Pho: So your book is titled Winter’s End: Dementia and Dying Well. So tell us some of the key points that you want readers to come away with after reading the book.

Lewis Cohen: Well, I think the main one for our audience really is a recognition that clinicians are unaccustomed to talking about end-of-life issues with their patients who have dementias. And that there is a minority, not a majority. I mean, I think the majority of people out there don’t want to perhaps talk about it, aren’t focused on it, they’re focused like everything else that we come to a physician or a clinician to see, in getting better and having this thing cured.

But there are a minority of people, and I count myself as being one of them, who in fact does want to talk about it. And we don’t get the opportunity, in part because clinicians don’t know much in fact about how people with dementias end their lives. There is not much research to really sort of back up the different ways, or how it’s likely to happen.

And so I wanted to find out, you know, what goes on. Because I think if physicians are knowledgeable about this, then they don’t have to turn to a patient and say, have you been thinking about dying? But I think in more subtle sorts of ways they will convey that this is not a forbidden topic for them, and that they’re game to speaking with those people, and they’re game to speaking with the caregivers.

Kevin Pho: What are some of the unique issues that physicians face when talking about end-of-life issues, especially in those with dementia?

Lewis Cohen: Well, probably the main one has to do with, we all acknowledge that if there’s ever such a thing as a major vulnerable population, it’s the folk who we end up diagnosing with having a dementia. And so I think we are very, very wary about doing that, and we’re concerned frankly as to how much they understand, how they’re going to perceive what we say to them.

And similarly for their caregivers, who are in for a rough haul. Yes, it comes to, if you will, an end over a long period of time. But we speak about, oh, there’s medications in the pipeline, there are things that we can certainly do that will improve things. And so this is the topic that I chose to focus on, is one that we just don’t really deal much with.

Kevin Pho: So take us into a hypothetical exam room. If a primary care physician like myself is talking to one of my patients with dementia, what are some of the red flags that we should look out for? You brought up the issue, how can we tell that that patient is understanding some of the issues that we bring up when it comes to end-of-life care?

Lewis Cohen: Look, you know, I’m a psychiatrist and I’ve been involved in a gazillion capacity evaluations of one sort or another. But truth is, I don’t bring to the table any special knowledge that you as a primary care physician, as a sensible rational human being yourself, doesn’t have already and doesn’t apply. You don’t need a psychiatrist to know somebody, for example, is deeply depressed, or is cognitively impaired and unable to understand.

Kevin Pho: Now, are there any common ethical dilemmas that clinicians typically face when talking about end-of-life issues in the population with dementia?

Lewis Cohen: I’d say there’s nothing that jumps out that should otherwise make them any different. And I’ll tell you again, I spoke to a lot of neurologists in writing this book, and a lot of geriatricians, and I certainly had some of them who said, patients never bring this up to me, I don’t think this is any kind of an issue.

But number one, I think that those physicians have subtly given a message to the patients and the caregivers that they don’t want to talk about it. And number two, they’re doing this because they think that it’s the right thing to do. But in fact, you know, as we’ve learned with folk who have other terminal illnesses, other fatal diseases, patients, if given an opportunity, a more open kind of question, not do you want to die, but are there things you want to talk to me about that maybe you’re a little uncomfortable with but I’m willing to hear, those are the folk who are going to respond.

Kevin Pho: So when you talk to the geriatricians that you interviewed for the book, and I know you also talked to bioethicists in the book, what are some common issues that they bring up regarding that area?

Lewis Cohen: What I hear them saying is that there has been a real sea change that has taken place in medicine over the last certainly decade or couple of decades, where attention to suffering has become something that is much more on our radar.

And when it comes to the folk who have these disorders, we tend to want to think that they’re not suffering. But in fact, when I met Dan Winter, who formed the spine, the narrative, of this book that I wrote, I found myself listening to a man who was suffering in all sorts of ways from his early onset dementia. And he needed somebody to both hear him and to legitimize not only that he was suffering, but what lay ahead, and why he might come to the conclusion that he came to, which is that he wanted to end his life.

Kevin Pho: Now, for those medical students and residents who may be listening to you on this podcast, take us into what it’s like to perform a competency evaluation. What are some of the questions that you ask, what are some of the things that you observe that goes into that evaluation, for those who may not be familiar with that process?

Lewis Cohen: It’s way into the process of having dementia before we’ll get to issues about questioning somebody’s capacity. And capacity is not a blanket kind of thing. I may lack the capacity to safely drive my car, and that often might come early, but I don’t necessarily lack the capacity to make financial decisions, or decisions about how I want my will to read, or what kind of treatment I want. Or in Dan’s case, he wanted all life prolonging treatments to end.

And what a psychiatrist who’s called upon, but again primary care doctor, neurologist, the geriatrician, what they’re looking to do in the course of just a brief interview is just ascertain that this person understands what their condition is, and that they have a pretty fair knowledge of what the risks and benefits of the options are that lie available to them. That’s kind of the nub of what we’re looking for with capacity.

And I might just also say, we talk about competency. Competency is related to capacity, but it’s really what a judge ends up making a determination, whether a person sort of in a blanket way has competency or not. Whereas when we physicians are talking about capacity, we’re talking about the capacity of the person to make specific decisions. And it doesn’t go away automatically, even if we think it might, even if, you know, this is an error on our parts, because somebody carries a memory impairment disorder.

Kevin Pho: In your book you also contrast the North American versus European approaches to these issues of dementia and end-of-life care. So talk about the two different cultures and contrast those.

Lewis Cohen: Sure. Dan Winter was a 62-year-old man from a very prominent family in Kansas City. Father had been a state senator for three years, and who came down with Alzheimer’s disease and spent 13 years slowly deteriorating.

In one of Dan’s last visits to the home where his father was largely kept, until the very end when he needed to go to an institution, he remembers it was autumn. He saw his father walking around looking at the oak leaves, and looking at each one as if it was the first leaf he had ever seen in his life. And one could take away from something like this how beautiful, you know, dementia can be for people in terms of simplifying things and also making certain pleasures stand out. Except on closer examination, the man was walking around with shoes without socks, he had an overcoat on, he did not have trousers on. And he didn’t recognize Dan or Dan’s spouse.

In America, even if Dan or his father had wanted to take advantage, lived in a state that had medical assistance in dying, they would not have been eligible because they had this diagnosis of dementia. In contrast to any number of Western European states in which they’ve approved medical assistance in dying, examples being Belgium, Switzerland, but a number of countries where they do not exclude automatically people because they have some memory problems. They do in fact what I answered when you asked me about capacity, they look at people’s capacity. And if they judge, despite the diagnosis, that the person understands the risk, the benefit, and the person is requesting assisted dying, they will grant it.

Kevin Pho: Tell us who the audience for this book is.

Lewis Cohen: Let’s start off with people myself, who worry that they may be coming down with or have a dementia. People who have gone to visit someone, a relative, a loved one, and walked away saying, oh my God, I’d rather shoot myself, I’d rather be dead. Those are the folk that have to read this.

And by the way, let me be really clear, shooting oneself is in fact probably the most common type of suicide that people with dementia do, and it’s a horrible way to die. There are a lot of other steps that one could take that are not violent, and Dan Winter’s story sort of goes through in part his decision making, what method would he end up using.

Beyond that, any clinician who’s going to be sitting down with people who have memory disorders and their families, I think, needs to read this book, because they need to be knowledgeable again about these different methodologies that are available. And they need to figure out for themselves what do they want. And it’s not necessarily going to be to facilitate any of that happening, but at least to know what’s available out there.

Kevin Pho: You mentioned early on that one of your impetuses for writing this book is that you wanted to explore the changes that you were feeling in yourself as you were aging. Now that the book is completed, what did you learn?

Lewis Cohen: Well, I learned for one thing that besides for general advance directives, there are a number of very specific advance directives that they call dementia directives.

They focus, by the way, often on what I would like done if I reached the point where I ceased voluntarily eating and drinking. Nowadays, you know, it’s rare that we drop tubes, but often we will put spoons in front of a person and spoon feed them. Is that something in point of fact that I want or don’t want? If I’m taking medications that are prolonging my life, do I want to continue taking those medications, or is it time to stop? That’s the sort of thing that I’ve learned. So there are dementia directives.

What else have I learned? I’ve learned from myself that I have put off going to see a neurologist and actually getting a diagnosis, because I was frightened and unsure of how I would want to handle it. And frankly, on Monday I will be going and getting an evaluation from someone who is expert in this, a neurologist. So those are the biggies, I would say, for myself.

Kevin Pho: We’re talking to Lewis Cohen. He is an emeritus professor of psychiatry, and he’s the author of the book Winter’s End: Dementia and Dying Well. Lou, we’ll end with some of your take-home messages that you want to leave with the KevinMD audience.

Lewis Cohen: Well, I would be remiss again if anybody thought I was coming across, either in this interview or in the book, as espousing, as suggesting that this is the good way to die, or these are the good ways to die. I’m not. I recognize that the notion of foreshortening your life is abhorrent to many of us, many of our audience, so I don’t want that to come across.

At the same time, I do want to give voice to that this is a reasonable thing for some people to do. And I would welcome any kind of questions that people would like to have with me via email. But also, if someone would like to get this book, email me and I have a code that Oxford University Press has given me that allows for a discount on the book, that I would be glad to reply with. And my email address, Kevin, is my name, so it’s lewiscohen at gmail.com.

Kevin Pho: Lewis, thank you so much for sharing your perspective and insight, and thanks again for coming on the show.

Lewis Cohen: My pleasure to speak with you. Thank you.