Dignity at the End of Life: A Podcast with Harvey Chochinov

Eric: Welcome to the GeriPal Podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, I am very excited. Who is with us today?

Alex: We are honored to welcome Harvey Chochinov, who is a distinguished professor of psychiatry at the University of Manitoba, senior scientist at Cancer care in Manitoba Research Institute. And who’s a latest book is Dignity and Care: The Human Side of Medicine.

Welcome to the GeriPal podcast, Harvey.

Harvey: I feel welcome.

Eric: Well, Harvey, I’m excited to talk. I think we’re close to 300 podcasts and I can’t believe it took us 300 podcasts to get you on here. So we got a lot to talk about, from how you got interested in this field, to dignity and dignity therapy, to some of your more recent works around intense caring. But before we do all of that, I think you got a song request for Alex. Harvey, do you got a song request for Alex?

Harvey: Alex, I’m a big fan of Cat Stevens. So why don’t you pick something from the Tea for the Tillerman recordings? The Tea for the Tillerman album.

Alex: That’s great. And Harvey and I had a back and forth via email and he was talking about how he remembers trying to pick up the guitar and this was one of the early songs he worked on. So if you can imagine a younger Harvey Chochinov singing Wild World, here we go. And someday we’ll get to play this together. Here’s a little bit.

(Singing)

Harvey: Love them. Well done.

Eric: Harvey, is it okay if I turn back the clock, probably decades for you. How did you get interested in end-of-life care, palliative care, and some of the work around dignity that you are really well known for?

Harvey: Oh, it’s hard to know where to begin. I mean, if I think about personal motivations and early beginnings, I mean, I’m one of three children, and middle child. My oldest sister who I’ve written a little bit about, her name was Ellen. She died at the age of 55, and was born with cerebral palsy. Had multiple physical, psychological complications as a result of that. And although it wasn’t a conscious decision, or connection, in my mind between entering medicine and the experience of having grown up in a family with Ellen. I mean, looking back, I assume that it’s part of what shaped my choices and my path. But once I got into medicine, I found myself attracted to the field of psychiatry. It seemed to be a place where there was an interface between kind of the biological sciences and the human side of medicine, if you will.

And during the course of that, eventually became attracted to the area of psycho-oncology. How could we do a better job in looking after patients with various kinds of malignancies? And that led me eventually to being directed to Memorial Sloan Kettering Cancer Center. This is going back to 1986, to age myself. And I did a fellowship with Dr. Jimmy Holland and met just these incredible luminaries in our field. William Breitbart, Kathleen Foley, Jerome Posner, Nessa Coyle. Just an extraordinary cast of individuals who were really so incredibly inspiring. I then came back to Winnipeg though without any intention really of becoming a researcher. I mean, I was very much a clinician. So I identified myself, and was working in our local cancer center. And at the time met a gentleman named Keith Wilson, who is a research psychologist, who kept on essentially harassing me, saying, “This is a really interesting area you’re in, and you ought to do some research.”

And I kept on finding ways of evading him, because I really wasn’t interested in research. And I had no idea what that would look like or what I would do until I happened upon an article by actually a fellow Winnipegger, a man named Jim Brown who was an expert in mood disorders. And he had published an article in 1986, in fact, in the American Journal of Psychiatry called Is It Ever Normal for Dying Patients to Desire an Early Death? And so we sat around in a journal club one day and we critiqued it. And decided, interesting article, but it raised as many questions as it answered. And I remember going almost directly from that journal club to Keith Wilson’s office saying, “After these few years of you harassing me, I think I know what I want to study.”

And we began writing and we got our first grant. And before I knew it, I mean I just found myself intellectually, and eventually kind of emotionally smitten by this whole field. I mean, I just found it intriguing and compelling. And so I found myself increasingly drawn to it. And that attraction has kept its grip over nearly 35 years.

Eric: Probably, what you’re known for very well by probably many of our listeners, is your work around dignity. How did that fit in? Was that an early subject of your research? Or did that came around a little later on?

Harvey: A little later on. Again, remember I had just come out of training in psychiatry. And so I was hardwired to be thinking and looking at the world in terms of a DSM kind of lens. Our early studies were looking at things like, desire for death, and syndromal depression, and screening for depression and anxiety, and will to live. And then as we kept on doing the work, we eventually found that there are more things in this world than DSM has necessarily conceived of. And at that time we also discovered some key publications that were coming out of Holland and the Benelux countries where euthanasia and assisted suicide had been practiced for some time. And it was an early paper by a fellow named Paul van der Maas. And they reported what they called the prevalence of MDEL, or Medical Decisions to End Life.

And what they ended up finding in addition to reporting the actual prevalence of how many people were availing themselves of assisted dying, how many people were availing themselves of euthanasia? The more intriguing question for us was, why are people doing this? And there what Van der Maas ended up reporting, by way of interviewing physicians who’d been involved in these death hastening acts was, that according to these Dutch physicians, loss of dignity was the most highly cited reason. And to us, I mean this was really quite intriguing, because what does it mean? It seems an ephemeral kind of construct. We went to the literature and found that dignity was a highly politicized term, and it was used in a variety of ways to basically mean whatever people wanted it to mean. But there were no empirical studies looking at dignity. And that was really the segue into our research program on dignity towards the end-of-life.

Alex: So it was motivated essentially by an effort to understand and palliate the sources of suffering that were leading people to choose to end their own lives. Is that…?

Harvey: I suppose, yes. I mean that’s where the inspiration came to us. Just this discovery that, if dignity is worth dying for, then it’s worth studying. It wasn’t that we decided to launch into studying dignity as kind of an antidote, or as an alternative, to assisted death. But it was clear that if people felt that the undermining of dignity left them feeling life was no longer worth living, then understanding dignity, being able to kind of explicate what is dignity about, ought to give us some insights into how we could palliate better and more effectively.

Eric: Do you have a definition of dignity now?

Harvey: Good question. Well simplistically dignity, and it would’ve been the definition I would’ve given you back then as now. Which is, dignity is to be deserving of honor, respect, or esteem. But now, when I think about dignity, I think about it through the lens of the model of dignity in the terminally ill, that we published in social science and medicine. And we published in the Journal of the American Medical Association. So we have an empirical model of dignity in the terminally ill, which shows multiple areas of influence that can impinge or support a patient’s sense of dignity. So there are three primary domains. And that includes what we call illness-related concerns, the things that are directly mediated by the illness itself. There’s something that we call the social dignity inventory, which is really all of the external factors that might have an influence on patient sense of dignity.

So things like privacy, social support. What we called care tenor, or the tone of care, feeling a burden. Something we called aftermath concerns. And then the final category, the third category is what we called the dignity conserving repertoire, which really has to do with kind of the spiritual, and psychological landscape and makeup of that individual. So when somebody says, “Well, what is dignity about?” I say, “Well, look, not necessarily what Chochinov thinks dignity is about, look at what dying patients have told us dignity is about.” And then I mean the interesting thing about the model, is that it allows you to identify this whole multitude of concerns that might influence patient’s sense of dignity. And the role of the palliative care provider is to figure out, knowing that different things affect different people, is what causes somebody in that particular instance to feel their dignity is being undermined. In some instances you find that it is really about, “Keep me comfortable, keep me pain-free, and my dignity will be preserved.” Whereas for others, it is very much kind of a spiritual journey.

We found, for example, an important influence in that middle category, that dignity conserving repertoire, was something called generativity. Which is a term that we borrowed from Eric Erikson, the developmental psychologist. And so for some patients, loss of dignity is about the sense that there will be nothing left in the wake of their having been here.

Eric: Sorry, I was on mute. I guess one question for providers is, as we dive into individual sense of dignity, and I guess threats to that dignity, is potentially feeling like we’re opening this box. That we’re maybe scared of not being able to close it. And what ways, if any, or should we, fix the issues that arise when we have these discussions with patients?

Harvey: Well, I mean, those are great questions and they open up a larger conversation, which I’ll try and truncate knowing that we have only a limited amount of time. I mean, oftentimes, I mean people will say, “Okay, so you’ve developed this model of dignity. And on the basis of the model of dignity you have created…” For example, we have outcome measures that are based on the model of dignity, the patient dignity inventory, which contains again, a multitude of questions. And you might say, “Well…” For example, I mean one of the questions on the inventory is feeling like I’m no longer who I was. To what extent is that a problem?

People might say, “Well, what the heck am I supposed to do with that?” I mean, somebody says, “Yeah, you know what, I really don’t feel like the person I once was.” And the options that you have then in broaching this question and looking at this topic is, okay, we have two choices then Eric. We either don’t ask about it, because we feel afraid that we just won’t know what to do with it. I mean, we’re going to feel kind of helpless, and impotent, and burdened. Or we open it up, in spite of the fact that we may not know how to fix. And I think most of us who’ve been working in palliative care for a long time, or working in medicine for a long time, eventually come to the realization that we don’t have to have a fix for everything. And that in fact, even though it sounds ironic, even allowing people to give voice to things that are irreparable, in and of itself is the beginning of our therapeutic interaction.

I did studies in the early days looking at desire for death. It’s interesting, not once did I have a patient say, “Oh, that’s really uncomfortable. I don’t want to be talking about desire for death.” I mean, in fact, the opposite. Everyone said, “At least I get a chance to talk about the things that are on my mind.” Now, it’s not that we can fix that in all instances, but you’re giving people an opportunity to express what they feel, to validate it. And I know later on you’re wanting me totalk a little bit about this new notion about intensive caring. And certainly an element of intensive caring is what I call therapeutic humility, and the ability to relinquish this kind of mindset of having to fix. But we can get there later on.

Eric: So for example, I’m going to go a little way back, because I was in preparation for this, because we got Harvey Chochinov on this. So I spent some time reading through a lot of your pieces, including an interview with NPR back… God, it was maybe 15 years ago. This particular one hit me, where you talk about a younger patient with brain cancer who was skeletal in appearance. So tiny, tiny, in a hospital bed. And really the only thing in the room was a picture of him as a bodybuilder. So incredibly muscular person. And you see this person who’s skeletal, you see this picture, and there’s a reason why that picture is there. And do we ignore that that picture is there? Or do we spend some time understanding, why is it there? Why is this important for him to know this about him? Or is this important?

Harvey: Yeah, I would say it’s uber important. I would say it’s critical. And it’s critical not just in terms of how you might respond to the picture, or what you might say to the patient as a result of what the picture elicits. But it’s important in terms of what it does between your ears. And by that I mean… And again, this is something that came out in some of our early studies. We had a study that was published in The Lancet in the early 90s, and it was the first quantitative empirical study of dignity in the terminally ill to be published. And there we reported, and again, we were doing lots of fancy number crunching. And we reported that appearance, or as it turns out, how people perceive themselves to be seen, was the most ardent predictor of dignity in this large cohort of dying patients. So we had looked at pain, and nausea, and anxiety, and depression, and all of these multitude of factors.

And at the end of the day, when you did the number crunching, you find out that appearance, or how people perceive that they are seen, was the single most important predictor of patient dignity. And for me it was kind of an epiphany because it said, I always thought about palliative care being what you do to patients, or what you do with patients, or with their families. And the data was saying, “What is really important is the way you, the care provider, experience that person.” So suddenly you start shifting your mindset from not only, so what are we doing with this patient and with their family, but how are we experiencing them?

And so the importance of the picture and the epiphany that really came many years later, I published a paper in the Journal of Clinical Oncology called Dignity in the Eye of the Beholder. And it’s a bit of a hokey title, but what I try and impress on readers there is that, the reflection that patients see of themselves, at least metaphorically in the eye of the healthcare provider, needs to be one that is affirming of patient dignity.

And so really what it says then is, as a provider, we need to be acknowledging personhood. I mean, we all give lip services saying, “Person-centered care is important.” And I think, “Well, that’s true.” But if you don’t know who this person is, or the essence of who this person is, you’re not doing person-centered care. I don’t care what you tell me. I mean, you can provide friendly care, you may be providing polite care, but you’re not providing person-centered care unless you know who the person is. And so the lesson that I was trying to impart in that NPR piece and the picture there is, whether this young man was conscious of it or not, the message was, “Here’s how I need to be seen. Here’s how I need to be appreciated.” And the truth is that we spend all of our careers learning how to look after patients.

And at the end of the day, no one wants to be seen just as a patient, because the term patient is generic. And none of us want to be seen as kind of the generic compilation of bits and bobs. We want to be seen for the entirety of who we are as human beings. And that is not generic, that is entirely unique to who we are as persons.

Eric: So how do you do that? How do you do that in clinical practice, in a way that doesn’t take five hours of sitting down with somebody?

Harvey: Well, so over the years, I mean, we’ve devised different ways of trying to put personhood on the radar. And you’ve alluded to dignity therapy, which we may talk about a little bit more in detail. But as you know, I mean it takes a certain amount of time and resources. We’ve created the Patient Dignity Inventory, which is a 25 item instrument based on the model of dignity in the terminally ill. And at the end of the day, I mean, people often will ask me the kind of question that you’ve asked me. Which is… In fact, I was approached by the Mayo Clinic recently. This was recently in the last few years. I was approached by them to say, “Look, we really like the work you’re doing, but we don’t have all the time in the world to get this done.” And I remember in fact, it was the neurosurgeon who was on the teleconference that we were on, and he said, “I’m a really busy neurosurgeon, so whatever you’re going to suggest, better not take too much time.”

And so I said, “Well, how about this? What do I need to know about you as a person to take the best care of you possible?” And he paused for a few seconds and said, “Yeah, I think I can do that.” So we have introduced something that we’ve called the Patient Dignity question, which reads, what do I need to know about you as a person to take the best care of you possible? We began this here in Winnipeg. We published a nice piece, I think it was in the Journal of Pain and Symptom Management. We reported some interesting findings that we can delve into further if you want to. But the point is that the PDQ, or the Patient Dignity Question, doesn’t take a lot of time. It’s meant to frame a brief conversation five to 10 minutes, and it’s been taken up in different centers worldwide.

I mean, it’s been translated into over a dozen languages. Recently, Memorial Sloan Kettering got Rachel Hadler, published a lovely piece that came out, several thousand patients that they had administered the PDQ to, in the context of receiving inpatient care at Memorial Sloan Kettering. So that is an approach that, I mean, when people say, “Well, we don’t have a lot of time.” I say, “Well, here’s a way of being able to do something relatively briefly.” The other thing, by the way, is that… And I had referred to something earlier on called the tone of care. It’s not the time of care, it’s the tone of care. So if you’ve got 30 seconds, it’s the same 30 seconds. Whether you’re going to make a good impression or a bad impression or very little impression whatsoever. Although it’s very difficult to achieve a neutral impression to somebody who’s feeling extraordinary vulnerable.

So I say, use the time you’ve got. I mean, I can recall mentors who just by the look in their eye, their demeanor. A hand on a shoulder without saying a single word, in a few seconds, they convey a tone of care that says, “I am here. I’m fully present. I’m not distracted. And who you are and what’s happening to you matters to me.”

Eric: Yeah. Well, I know we were dancing around this issue too, around dignity therapy. What exactly is dignity therapy? And how did you come up with that?

Harvey: So again, in my research career, I’ve kind of followed my nose. And in following my nose, I mean whatever the last study was usually serves or provides a platform for the next study. And when we did this study on dignity in the terminally ill, and came up with this empirical model. The model began to show us, or provide some clues, on how you can achieve dignity for patients who are approaching end-of-life. And so many of the things within the model relate to issues related to personhood. So we knew that it was important, even for people near the end of life, to have an opportunity to express what their rules were, to acknowledge what their accomplishments were. To essentially, and I don’t know if you remember Stuart Farber, who was a wonderful palliative care physician in Oregon who before his death, he published some lovely pieces in JPSM. In which he talked about his thread, and the importance of knowing… Metaphorically, he used this notion of his thread, which was his essence.

And so we know from the model, that being able to talk about your thread, your essence, seemed to be an important element of dignity. We also knew from the model that generativity was important. In other words, whatever we would be devising, if we were going to be devising some kind of a psychotherapeutic intervention would need to have some kind of a tangible, lasting influence. A ripple effect that would even extend beyond death itself. And then we also knew from the model, the tone of care that would be required, sort of a very, in sort of like a Carl Rogers kind of way, affirming, non-judgmental. And so dignity therapy then, when you put those things together, invites patients to talk about issues related to personhood, or the things that they would want known or said, as they’re approaching end-of-life. We know that these conversations are recorded and transcribed and then edited.

So it can create a generativity or legacy document, that will be given to that individual so they can bequeath it to loved ones. And during the course of doing dignity therapy, we know that the tone of care needs to be nonjudgmental affirming. So that when you’re sitting with a patient and doing dignity therapy, they are experiencing themselves and their words as being valued. And so that, in essence, is what dignity therapy is comprised of. I mean, the entirety of dignity therapy, of course, is a little bit more complex and more nuanced, and is probably best described in my book, Dignity Therapy, Final Words for Final Days. It was published by Oxford.

Alex: So what’s the evidence? Show us the evidence.

You studied this. We know you’ve studied it, we’ve seen your publications. What is the evidence for dignity therapy for seriously ill patients?

Harvey: Well, dignity therapy is probably the most studied psychotherapeutic intervention in palliative care today. I think I can say that pretty unequivocally. There are over a hundred papers on dignity therapy in the literature, across multiple cultural, national settings. There are dignity therapy studies that have come out of Taiwan, China, Japan, Eastern Europe, Western Europe. Many studies in Canada, the United States. The last count, I believe there were 10 systematic reviews of dignity therapy that have been published. So the collective wisdom on dignity therapy is that it enhances end-of-life experience. The specifics of how it does that depend on the population in which it’s implemented, and the outcome measure that is utilized. We know from… There’s been some studies that have come out of Portugal, for example, that have shown that in highly distressed populations, dignity therapy in randomized control conditions was able to mitigate depression, anxiety, demoralization, and desire for death.

So what is the evidence? There is ample evidence that dignity therapy has those kind of salutary effects in patients not only approaching end-of-life. What’s been interesting is that, again, when you think about dignity therapy, at least initially, it was meant to address patients for whom personhood was under assault. I mean, when you’re dying, personhood can… We can suffer as a result of the fact that we feel that things that we intrinsically connect to who we are as individuals, are starting to disintegrate, or are under assault. Very much like Eric Cassell’s work. But what’s interesting is that there are other things in life that can also assault personhood. And so if you think about those things, dignity therapy has been tried and shown to have efficacy in each of those domains. So people who are experiencing cognitive decline, experience an assault on sense of personhood.

And there’ve been some lovely studies on dignity therapy in early to moderate dementia. Bridgett Johnson in Scotland has published some lovely pieces. We, ourselves published some work in that area. There’ve been some studies on dignity therapy in incarcerated individuals. And again, losing your freedom is another assault on personhood. So it is another area where dignity therapy is being invoked. And finally, in psychiatric populations, again, it’s another area where the end organ, if you will, the organ under assault is self. And so those are the places where dignity therapy is beginning to find inroads. It’s also beginning to find some uptake, or interest, outside of the domain of medicine. And you see dignity therapy written up in the lay literature. And Washington Post during the time of Covid actually did a lovely article on dignity therapy. And for some reason, by the way, and I mean I can speculate, I have done more dignity therapy during Covid than at any other time. In fact, in the entirety of my career during Covid, I did more dignity therapy than any other time.

Eric: Why do you think that is?

Harvey: Well, I can only speculate. I mean, a couple of things. Perhaps it’s the fact that the strains on the system assaults to kind of sense of personhood. The difficulty for people to kind of get self on a clinical radar was more trying. The other thing, and I know this sounds maybe counterintuitive, but Zoom and virtual platforms allowed me to do dignity therapy and reach into places that I wouldn’t necessarily have thought of extending it to. So I mean, I had referrals from as far as Canadian Arctic North, of people who were interested in doing dignity therapy. Or was able to do dignity therapy with somebody who was in a personal care home. And so maybe Zoom made it kind of normalized, the idea of using a virtual platform to reach into places that we wouldn’t necessarily have thought about extending it to.

Eric: What disciplines is dignity therapy designed…? Who’s supposed to be giving dignity therapy? Is it psychiatrists and psychologists? Is it a broader group than that?

Harvey: That’s another great question. I tend to think about dignity therapy more as kind of like a specialist skill. Because if you were thinking of something like massage therapy or hypnotherapy, you wouldn’t think to yourself, “Oh, this is something that all the palliative care clinicians learn how to do.” You’d say, “Well, that doesn’t make a lot of sense.” You want to be doing enough of it, so that you gain facility. And you also want to be doing it so that it fits with your kind of pattern of practice. So I think about social workers, pastoral care professionals, like spiritual care clinicians. Certainly psychologists, psychiatrists, those are the individuals that… I mean, I’ve trained more of those than people in palliative care who are going to go on and end up kind of doing dignity therapy. For a palliative care physician, or a palliative care nurse to take the time out of their day to implement dignity therapy?

I mean, they may do it once or twice in a year, but I would think it would be impractical for them as opposed to somebody who is already being paid, and whose mandate is to provide patients that kind of concerted care.

Eric: A lot of this too is really understanding for the team, so the experience of the team with the patient, and understanding who that patient is as a person. I think that, as we think about how we implement that and what we can do about that, it also reminds me of another thing that you are becoming well-known for too, is the platinum rule. Can you describe, I know what the Golden rule is, do unto others, but you would want them done unto yourself… I guess, I don’t know what the golden rule is. Something like that. What is the platinum rule Harvey? And how does this all fit in together?

Harvey: Well, I think it fits in together, because we’re talking about the issue of personhood and how to recognize and acknowledge personhood. And we’ve talked about the importance of the healthcare provider, and what goes on between your ears. So what we have to realize is that what goes on between your ears, also has been shaped and formed by the way in which you yourself have been raised and taught. What do you value? What do you value less? And certainly in Western culture, what are we taught to value? Youth, beauty, power? I mean, those are the things that as a society we place on a pedestal, and everything else falls somewhere underneath. So, the Golden Rule says, well, if we use ourselves as kind of this perfect infallible barometer of what a patient might want, then we say, “Geez, if I were in that situation, this is the way I would want to see things unfold.”

But what happens, Eric, when the lived experience of the patient is something that is very different than your experience. I mean, I mentioned my sister Ellen. Actually, I’ve published two pieces on the Platinum Rule. One was in the Journal of Palliative Medicine, and the other one was in JAMA Neurology. And the one in JAMA Neurology is called Seeing Ellen, the Platinum Rule. And it basically tells the story of a time when she was, once again, going into respiratory distress. She was in an intensive care unit. And there was this moment in time where the intensivist was trying to figure out, does someone who looks like Ellen, who is shaped like Ellen, the kind of person that we would intubate and invoke heroic measures? And so, at that moment in time, what you can understand is that this intensivist was seeing Ellen through a lens, and the shape of that filter was influenced by his own world experience.

He didn’t understand what it meant to be a woman who had lived with disability, who was loved by a family and loved her family. Whose quality of life, if not for all of the hassles that society puts in the way of people who are disabled, she would say was very good. I mean, she was very keen to carry on her life as long as possible. So the platinum rule says, you need to acknowledge that you see things in a way that are influenced by bias. And what you need to do then is to see the world or attempt to see the world the way the patient would. In other words, do unto patients as they would want done unto themselves. Now, what some people have come back with quickly is to say, “Oh my God, are you saying that, then every patient deserves everything at all times?”

And in the article that I wrote, because I anticipated that that would be the response, I said, “No, no. Some patients may be driven by a sense of overwhelming depression and therapeutic nihilism and say, ‘I want nothing. I deserve nothing.’ And other patients may be driven by a sense of incredible and unrealistic grandiosity. ‘I want everything.'” The platinum rule, it’s a way of being able to have a moral compass. And a moral compass that’s informed by understanding that the world isn’t the way you see it necessarily. And so we need to understand it the way that our patients see it. Even if we end up not being able to provide, or acquiesce to what it is they might request or want, it gives us their perspective. And it makes us stop and say… And listen, the golden rule is an important moral adage that has appeared in religious traditions across the millennia. It’s not like we need to chuck the golden rule. We need to understand like anything else, there are limitations. And the platinum rule points out a response to one of those very real limitations.

Alex: I’d love to talk with you a little bit about intensive caring if we could, and the notion of intensive caring. To get into this, Brian Block who’s been a guest on this podcast. He’s at UCSF, he’s an intensivist. And he’s been a guest host on this podcast last with Susan Block. Who’s his aunt by the way. So Brian wrote this article in JAMA Internal Medicine arguing that we should take the word intensive out of intensive care units. And that intensive has come to be associated with aggressive life sustaining treatment. And that does a disservices to patients who expect that when they’re in the intensive care unit. And it strikes me that you’ve kind of taken this word intensive, and taken it the other way with the meaning that we are going to provide intense care to you. In the same way that they might provide intense life sustaining treatment in the intensive care unit. So, that’s just by way of introduction, and I know we’re short on time, but if you could give our listeners a glimpse of what intensive caring is.

Eric: And we will have a link to the intensive caring article that Harvey published as well.

Harvey: On the Journal of Clinical Oncology website. So I guess where this came from, this last year, I was invited to deliver the Sicily Saunders International Annual Lectureship. And so I’ve been thinking about that and thinking about Dame Sicily. Who, as you know, the famous adage of Dame Sicily Saunders is, “You matter because you are you, and you matter to the end of your life.” And so I thought, “Well, that’s really interesting and important.” But the one thing that Dame Sicily didn’t tell us was, well, how do you do that? I mean, it’s one thing to say you matter and you matter because you are you, but how do you operationalize that? And so that’s where the idea of intensive caring came to me. I mean, the fact is that intensive care, as you said, Alex, I mean we invoke it as a way of trying to, in a very intensive focused way, attend to people who are in physical, biologically in dire straits.

But what happens to the patient who feels they no longer matter? As one patient told me, “Breathing is redundant.” What’s the point? Who are feeling helpless, hopeless, worthless. Is there not an equivalent way of caring that could be attentive to that kind of patient? And so that’s where the notion of intensive caring kind of manifest. And what I did in the article, the JCO article, is to say, “Well, what are the various different empirical elements of intensive caring that clinicians could invoke?” And it really offers ways of being able to be with suffering, and to be able to be more attentive with suffering. And again, because of limited time, we can’t go through all of it in detail, but it consists of various elements including non-abandonment, holding containing hope. Also, a tone of care, or therapeutic presence, that is affirming of dignity.

And then maybe the last thing that is worth spending a few minutes on if we’re going to just sort of focus on one thing, is what I called therapeutic humility. And again, all of this work comes out of the research that I and my colleagues have done the last 35 years. So this wasn’t entirely new material, but it was taking all of that material and introducing it under this umbrella of intensive caring. So therapeutic humility is the ability to tolerate clinical ambiguity, to accept and honor the patient’s expertise, and also to be able to kind of relinquish the need to fix. And when you think about the traditional medical paradigm, what do we do? We examine, we diagnose, we fix. I mean, that is western medicine described in three words. The problem with it, like the golden rule, the problem is there are limitations.

What happens when there are things that are beyond the realm of being fixable? And again, for any of us who have worked in medicine for a long time, we know that much of what we deal with is not amenable to being fixed. And so we need to shift the paradigm so it’s no longer just examine, but it’s to understand what’s going on with this person. To diagnose, to come up with a formulation, to be able to really get hold of the cause of this individual suffering. And then fixing really needs to segue to ways of being with. And again, intensive caring describes all those ways of being with that aren’t about fixing. Because if we hang onto the notion of fix, the impulse is, well, in the face of things that can’t be fixed. Certainly in the era of when I went to medical school, the human inclination is you withdraw, you abandon. I mean, in the old days, these are the patients who were non-teaching.

You only did rounds at the end of the day if there was time, and you were so inclined. So intensive caring then hopefully empowers healthcare providers to think about a new way of approaching suffering, that doesn’t leave them feeling that their only options are to either show up and feel impotence, or to abandon and essentially undermine the essence of what patients need at that point in time.

Eric: All right, Harvey, I’m going to say the last question, probably the hardest question. I’m not sure we’re even going to be able to get to it, but reading through this intensive caring. There also, I don’t know if it was reading through your article, it was meant to be the… But it felt like, at least I read it as, in some ways it’s a reaction to the… And you correct me if I’m wrong, the modern day movement around physician aid and dying, is that you have people who feeling that loss of personhood, being a burden to others, being a burden to society. And this is the fix. And for some providers, there’s this therapeutic nihilism that like, “Okay, this is not something that we can fix, but here is something that we have to offer.” Did I read too much in that or? I don’t know.

Harvey: Well, it wasn’t written as a means of trying to say, instead of medical, you should be doing this.

Eric: This, intensive caring.

Harvey: Because the fact is that, the wish to die… In fact, I just had an article published today. A letter to the editor in the Journal of Palliative Medicine. Essentially saying that, let’s not get into black and white thinking. That the wish to…

Eric: Complicated.

Harvey: Complicated. And intensive caring, I think, acknowledges that the wish to die, human suffering is complicated. I would certainly say that in Canada with respect to medical aid and dying and all the interest in medical aid and dying, intensive caring ought to be very high on our curricula. If we’re going to truly be attentive to patients who are expressing the wish to no longer be here. And that’s been one of my anxieties with medical aid and dying, is that it immediately shifts people from what should be a conversation about, “Well, let’s understand why you don’t want to be here.” To a conversation of, “Well, do you meet the legal criteria for being eligible for that?” I think that that’s doing a clinical disservice to patients by getting into that legalistic stance, as opposed to first and foremost, I mean at the bedside we’re clinicians. So when patients express a wish to die, that’s not just something that began in 2016 when legislation came into effect. That is a way that patients express human suffering as long as there have been humans who have suffered.

Eric: Yeah. Well, Harvey, I want to thank you for being on this podcast. I realize, man, we could have a three part episode with you, Harvey. I really appreciate being on this one, but we have one thing left over, Alex, want to sing for us a little bit?

Alex: (Singing)

Eric: Harvey, thanks for being on the podcast with us.

Harvey: Made it to the big time.

Alex: We made the big time.

Eric: Yeah.

Alex: We have you on. It’s great.

Eric: And for all of our listeners, in our show notes on the GeriPal website, we’ll include links to the articles. And to all of our listeners, thank you for your continued support.