The Current - Asking doctors to see the person behind the patient

Episode Date: August 27, 2025

Dr. Harvey Max Chochinov says doctors shouldn’t just focus on diseases or sick body parts, but get to know the person behind the patient. He talks to Matt Galloway about his mission to improve the doctor-patient experience for all of us.

Book club on Monday. Gym on Tuesday. Date night on Wednesday. Out on the town on Thursday. Quiet night in on Friday. It's good to have a routine. And it's good for your eyes too. Because with regular comprehensive eye exams at Specsavers,

you'll know just how healthy they are. Visit Spexsavers.cavers.cai to book your next eye exam. Eye exams provided by independent optometrists. This is a CBC podcast. Hello, I'm Matt Galloway, and this is the current podcast. Patients are looking for a reflection in the eye of the health care provider that will affirm their sense of themselves. If all they see in this metaphorical reflection is a problem checklist,

they end up feeling that the essence of who they are as a person and has fallen off our radar. That's Dr. Harvey Max Chochinoff, speaking last year at the White Coat Ceremony for incoming medical students at the University of Manitoba. He's on a mission to improve the doctor-patient experience. This idea of personhood being under assault

or threatened or starting to disintegrate has long been considered central to the experience of human suffering. So, we must ask patients what they would want known about them as persons to provide them the best care possible. Take it from me. The responses you will get to that question will permanently change the way you see your patients. Dr. Chachinov's groundbreaking work on patient-centered palliative care has been adopted around the world. His accomplishments are many, but to name a few,

the Queen's Golden Jubilee Medal officer of the Order of Canada, to the Canadian Medical Hall of Fame and the Arthur M. Sutherland Award for lifetime achievement in the field of psychoancology. Matt Galloway spoke to Dr. Harvey Max Chochinoff last fall. Here's their conversation. I want to begin just with that question that you pose in those remarks there. What would I like you to know about me for me to get the best care possible? Why, from your perspective, as the doctor, Why is that question so important? When people enter into health care, oftentimes the things that becomes kind of paramount, in fact, even overshadowing everything, is being ill and being understood on the basis of their illness. Recently, I was speaking somewhere, and in the introduction, the woman who was introducing me talked about illness casting a long and dark shadow.

And I was thinking, yeah, and it's hard to be seen when you're standing in that shadow. One of the ways to make sure that the individual is seen within that shadow is to ask, so what would you want known about you as a person in order for us to take the best care of you that we can? Bringing back the patient to the center of the conversation matters. You said in those remarks to Doctors to Be that the answer to that question can be really profound and will change the way that they see their patients. What have your patients told you when that question has come up, What do you want me to know about you?

What have you heard back? You'll hear things that you can't unhear. You'll see things that you can't unsee. For example, I remember one indigenous woman who was in her mid-50s dying of a metastatic condition. When we asked the question, she said, well, what you need to know about me is I'm a residential school survivor. My family moved 82 times, so no one would get to know us too well. And then she said, and you know what, people in white coats, I don't really trust them. I don't think they're going to give me the information that I need in order for me to make decisions.

Another woman that comes to mind is somebody who is in her mid to late 80s. She was dying in our palliative care ward and I walked in. And she said, well, what you need to know is that my coming death is not really such a tragedy. I've lived a long and good life. But if you want to know what keeps me awake at nights, it's the fact that, my young son in his mid-50s is dying in the hospital on the other side of the river and what will happen to my daughter-in-law and what will happen to our grandchildren. And again, when I hear those examples, I think, you know, how can we claim to be providing

person-centered care in the absence of knowing something that is just so central to who that person is? I would say that without knowing that, you can provide perhaps efficient care or kind care, seemingly attentive care. But without knowing who that person is, you really can't provide person-centered care. How did those stories change how you approached those patients? Well, it goes beyond just how it changed me. I mean, we have studied this approach with hundreds of patients. And now at this point, I mean, the patient dignity questions,

and that's how we refer to it, has been studied in thousands of patients. And so what the data shows is, first of all, all patients, and to my knowledge, without exception, say, this is information that needs to be placed on my clinical chart. In other words, they're saying, this is how I want to be seen. And what we know from the health care provider perspective is that at least in 90% of instances, they learned something that they didn't previously. know, that they have reported that in the vast majority, this increases sense of connectedness, empathy, and respect. And also, interestingly, that it enhances their job satisfaction, that if you are engaged with people in a way that is not simply technical and transactional, but also relational, that increases job satisfaction.

Is that something, I mean, I've spoken with doctors in emergency departments, for example, and they will talk about how they can often feel like the relationship. relationship with the patients that they're treating is those words transactional. Does that happen more broadly in medicine? Oh, absolutely. I mean, as you're giving that example, I'm thinking of a nephrology nurse who was working in dialysis. And she said, you know, after all these years, the truth is that patients begin to look like kidneys on legs. And she knew that that wasn't good for her.

She knew that wasn't good for patients or families because nobody likes to be seen. as being defined by their illness. And the great irony is, of course, we spend all of our professional lives learning how to look after patients. But patients really don't like – nobody likes to be treated just like a patient because being a patient is a generic designation. You know, it's based on a specific kind of biology or pathophysiology, but it's not based on who you are as an individual. And patients begin to suffer if they feel that personhood, the essence of who they are, is under assault of disintegration. How does that happen that personhood, that nature of the person, the individual is disintegrating? You know, when I spoke to the medical students, I kind of forewarned them that this was a potential danger.

Because in order to wrap your mind around the complexities of medicine, what we do, just even in, in teaching you medicine is we have to silo people into various different systems. So I talked about they're going to be learning neurology and nephrology and pathology and many ologies. But what can happen is all of that siloing can sidetrack the fact or displaced the fact that they're really dealing with whole person. So when people are somewhat ill, they usually brush it off because we put back on our clothes and we put back on our kind of a healthy persona and we carry on. But when you're ill, you don't have those kinds of reserves. And so those assaults can be profound. We know in our research, for example, that one of the things, I mean, shoulder to shoulder with feeling, you know, I can't do things I used to do and I'm worried about and I have symptoms of stress, shoulders to shoulder with that is.

I don't feel like me anymore. So that speaks to that idea of dignity. You talked about this being a patient dignity question. Why do you use that word intentionally? Well, I have conducted a large program of research on dignity. And the entry point was actually having looked at what was happening in the Benelux countries around practices of euthanation, assisted suicide. This goes back to the early 90s. And we were interested in knowing what is it that happens to people that undermines their wish to go on living.

And so there was some really important work that was done in Holland, a paper that came out in The Lancet that reported why patients had sought out this way of having their lives ended. And indeed, what these investigators did is they approached the doctors who were listed on the death record of those who were. who had died as a result of euthanasian assisted suicide and said, so why did your patient walk that path? And over and above anything else that these Dutch physicians reported was lost sense of dignity. And so we decided that, you know, if dignity is worth dying for, then dignity is worth studying. And for, you know, a number of decades, dignity is being an important thread in our research because we went into it with the idea that it appears that loss of dignity seems to, you know, render a state where life becomes untenable, unsustainable.

You've done research on this, but if you don't mind me asking, I mean, there is a personal dimension to this as well. And you've spoken publicly about your sister, Ellen, who died from complications from cerebral palsy. Correct. How did that personal experience shape some of what you're saying and some of how you think about this? You know, there was one article that I wrote that specifically told one facet of Ellen's story. I mean, Ellen died at the age of 55, and several years before her death, she had been admitted to an intensive care unit. She had lousy respiratory capacity based on anatomical distortions because of kifosis and scoliosis. and the like. So she was now in intensive care on the brink of the intensiveist trying

to determine whether or not she would need to be intubated, whether a breathing tube would be needed. And, you know, of course, the family is there. We're all kind of beside ourselves with worry. And the intensivist is kind of pacing about the unit trying to kind of make some decisions. And he came up to me and he asked me the only question. that he asked about, quote-unquote, personhood. And the question was, does she read magazines, which struck me as just kind of completely bizarre and random? What do you mean, does she read magazine?

And then it occurred to me that what he was saying is, you know, I can see her chyphosis, I can see her scoliosis, I can see her dropping blood gases. But what he couldn't see was Ellen. And the question he was asking was, you know, is this the sort of person we ought to be intubating? And, I mean, I remember I almost felt kind of faint thinking, oh, my God, you know, like her life hangs in the balance. So I took a moment in a deep breath and I said, well, yes, she reads magazines, but only when she's in between novels. What did that tell you about a better way forward? Well, that particular article used her story to illustrate a concept that I've referred to as the platinum rule.

Is the perception of the health care provider something that shapes patient experience, then we better understand something about that health care provider lens. And what if that lens is shaped or distorted in a way that can't necessarily see somebody else's lived experience? And, you know, so could that lead to a certain sense of kind of therapeutic nihilism? You know, would I want to be that disabled? Would I want to be that fragile? Would I want to be that vulnerable? Perhaps even then leading to advice to help that person avert a future that the health care provider, him or herself, wouldn't be able to tolerate. So what the insight I hoped that I revealed in that particular article in the Platinum rule is, you know, doing.

unto patients as they would want done unto themselves. In other words, always to check our own biases and appreciate that we are seeing things in a seemingly accurate way, but we have to admit to ourselves that, I mean, the lens that we're looking through has been shaped in ways that we may not even be aware of. Book Club on Monday. Jim on Tuesday. Date night on Wednesday. Out on the town on Thursday

Quiet night in on Friday It's good to have a routine And it's good for your eyes too Because with regular comprehensive eye exams at Specsavers You'll know just how healthy they are Visit Spexavers.cavers.cai to book your next eye exam I exams provided by independent optometrists Art has power to inspire us

To unite us To give a solace and courage when we're need it most to create important stories, lasting memories, a sense of belonging. Your National Arts Center serves as a catalyst and communities across Canada, empowering artists, inspiring audiences, and bringing us closer together. Learn more at nacc.ca.ca.c.c.c.c.c.c.c.c. is your sense that how we as a society, but particularly within your field of work, when we look at dying patients, patients at the end of their life, has that changed since you were a medical student?

So I remember when I was a medical student, you know, we would do rounds with a senior physician on staff and be taken around to, you know, all of the patients except if somebody had a condition that was considered, you know, beyond the realm of, you know, or beyond the reach of cure, they would be made, quote-unquote, non-teaching. In other words, the focus, the perseveration was, you know, if you can't fix it, then it's really not within the lane of medical practice. There's nothing we could learn from that patient. Well, not only is there nothing that we can learn, but we, I mean, I would say, you know,

we were out of touch with just how powerful our arrival in that room and being present. you know, could be. But that just wasn't part of the dialogue at that time. Is that different now? For a long time, we didn't talk about death. I mean, and that's broadly, but it feels like within medicine as well. That discussion, part of that's about advances in palliative care. Part of that is also just understanding that it's coming for us.

It doesn't matter whether you want to talk about it or not. And so we need to figure out ways to be comfortable with that, ways to think about what a so-called good death can be. Is your sense that that is materially changing? I hope so. I think so. I'm certainly doing everything within my ability to try and raise the bar on that. Just last year, I published an article in the Journal of Clinical

Oncology introducing an approach that I coined intensive caring. You know, borrowing from, you know, the notion of intensive care. When you're in terrible physical distress, you know, dire straits, physically we offer intensive care. But what happens when people are in a state of, you know, dire psychological or existential or spiritual distress? Could we then invoke something that I refer to as intensive caring? And in some ways, it was kind of inspired by the work of Dame Cicely Saunders, who was the founder of the modern hospice movement. And Dame Cicely famously said, you matter because you are you and you matter to the end of your life. Well, what happens when people reach a state where they don't feel like they matter, where they feel helpless and hopeless and worthless?

So intensive caring describes an approach that hopefully helps us shift the paradigm. And the traditional medical paradigm is we examine, we diagnose, we fix. If we accept that there are facets of human suffering that are beyond the realm of being fixed, then we need a different paradigm. And that paradigm looks like who is this person, understanding the nature of their suffering and finding ways of being with. And even though that may sound kind of, you know, in medicine they refer to it as touchy philia. I mean, one of the first tenets of intensive caring, for example, is non-abandonment, showing up.

You may say, well, that sounds kind of lame. You know, when you're thinking about human suffering, you're saying showing up matters is going to make a big difference. We know there are studies that have been done that show that people who weren't offered follow-up, who are living with advanced malignancies. That is follow-up with their health care system showed a higher prevalence of suicidality. And there was another more recent study in the United States that looked at correlations or associations between suicidality and the strength of the relationship between the patients and their health care provider. And it was the most ardent predictor of suicidality even over and above psychotropic medication. So, the showing up matter?

Well, it matters to the extent of, you know, life versus death. Sometimes patients can benefit from a bit of touchy-feely. Well, in really profound ways. Yeah. Can I ask you, as somebody who works in palliative care, are you comfortable with increasing access to medical assistance in dying? It's a complex question. Dr. Medical assistance in dying is why I initially got into the study of dignity, and it's provided incredible insights into kind of conditions of human suffering.

Medical aid in dying is always going to be something that a tiny facet of individuals are going to want in terms of the timing and the circumstances of their dying. But for me, the approach is far too narrow in that, I mean, I'm interested in human suffering and the breadth of human suffering. And over the years, of course, have looked at finding ways to understand that more broadly and even have introduced ways of being able to be more effective in response to human suffering. And so if people feel as though the way to alleviate that suffering is to choose. their own time and method of departure. Is there anything wrong with that? Well, you know, again, I come at this not with a political agenda or an ideological agenda. My lane, my work, my papers and books have all been in the area of how do we attend to suffering. You know, there are some people who are very ardent in their

positioned to say, this is about autonomy, this is about my body, my decision, and therefore it's a dignity issue. And in fact, before we had done any studies on dignity, you found dignity cited frequently in the literature. And on that side of the political offense, that was the dignity card that was played. But on the opposite side of the political fence, where people saying, you know, this undermines the patient doctor relationship. This is a violation of the Hippocratic Oath.

this is the taking of human life, that that is a dignity issue fundamentally. We said, you know what, we're not the moral police. We are clinicians. We are scientists. We're interested in understanding human suffering. The wish to die is an expression of human anguish. And anybody engaged in health care needs to understand that, needs to be able to explore that and find out what's that about? Let me ask you just two final things before I let you go.

One is we hear a lot about problems in health care. There aren't enough family doctors. There is a lack of access to primary care just broadly. People can't get into emergency departments. People can't get the care they need. It takes forever for people to be recommended to a specialist. And the system is stretched in a bunch of different directions. Do we have the capacity in our health care system now to provide dignity?

Well, I mean, I would say can we afford not to? because what happens when we don't take into account personhood, you know, when we don't recognize that we're dealing with people who are, I mean, they may be in a health care crisis, and I mean, there may be something bodily that's going on with them. But the fact is that, you know, there's a human drama unfolding here. And if we're not in touch with that and recognize the pathos of that, what happens is that people become less trusting.

They don't necessarily tell us to the extent we need. to know what's going on. There's a heightened likelihood of kind of discordance in in goals of care. But you understand the strains on that as well, that the doctor or whoever's treating you has you to treat and then 50 other people down the line. And I can't spend any more time with you because I have to get to this person and then I have to get to that person and that that can seem like an assault on dignity to the person who is being treated. Right. Well, I mean, time is always invoked as a problem in a limitation, and that's not to say that it isn't. But, you know, if you have two minutes, you've got the same two minutes to make a good

impression or a bad impression, to act like somebody who is distracted, or to be somebody who sets aside the pager and is fully present for that person. There have been studies that have looked at something as basic as whether the physician sits or stands, and if the physician sits, the perception of the patient is that they were there five times longer than they actually were. And 90% of them say they were satisfied with the transaction versus about only 40% when the physician was standing, not changing anything else in terms of the transaction that took place between them. Just finally, how has your life's work and this work on human suffering shaped your own outlook on life? Do you think differently about life

because of the work that you have done? You know, my father at one point in his career was an insurance salesman. And so conversations about, you know, the probability of death and, you know, based on, you know, age and illness. I mean, these conversations, you know, were frequent around our kitchen table. So it's interesting that in my life as I move forward, I mean, you know, I am dealing with conversations about death and dying. every day. I mean, I know life is a time-limited event. And in fact, even today's interview and doing lots of speaking, I see myself in the third act of my career. And if there's any agenda that I have, it's that, you know, during this remaining time, you know, before my health and

creativity and energy deteriorates, that I will be able to do what I can to spread the word as widely in order to raise the bar on person-centered care. You're not wasting time. Thank you. It's a real pleasure to talk to you about the work that you're doing. Congratulations on all of the recognition that that's getting, but also on the difference that you're making for all of us, not just as patients, but as people. Thank you very much. You're quite welcome. Thank you. That's Dr. Harvey Max Chochinoff, a distinguished professor of psychiatry at the University of Manitoba. You've been listening to the current podcast. My name's Matt Galloway. Thanks for listening. I'll talk to you soon.

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