Harvey Max Chochinov, MD PhD FRCPC FRSC
Canada Research Chair in Palliative Care
Distinguished Professor-Department of Psychiatry
University of Manitoba, Canada
Director-Manitoba Palliative Care Research Unit, CancerCare
Dr. Baile: Welcome to our Achieving Communication Excellence lecture. I'm Walter Baile, Director of the ICARE, Interpersonal Communication and Relationship Enhancement, and it's really my great pleasure today to welcome as our guest lecturer, Dr. Harvey Max Chochinov, who is Distinguished Professor of Psychiatry at the University of Manitoba and Director of the Manitoba Palliative Care Research Unit, CancerCare Manitoba. Dr. Chochinov did his work, most of his work in exploring the various psychiatric dimensions of palliative medicine such as depression, desire for death, will to live, and dignity at the end of life which he'll talk about today. His research has helped define the core competencies and standards of end of life care. For his work, he's been awarded the--a number of important awards such the Queen's Golden Jubilee Medal and his province's highest honor, the Order of Manitoba. He's published extensively in the field of psycho-oncology and palliative care and has recently published a book called Dignity Therapy: Final Words for Final Days which is published by Oxford University Press. So, Harvey, welcome and thank you so much for spending time with us.
[ Applause ]
Dr. Chochinov: Thank you all for coming and Walter, thank you for the very kind introduction. I'd hoped that I was the primary draw for coming to today's talk and I was under the illusion that I might have been up until I saw everyone's response to lunch being brought in. [Laughter] And that sort of put everything in perspective, you know. A humbling moment I can say. I was told that one of the keys to success in this particular lecture, above and beyond anything else, is to start and finish on time because we're being recorded. And so, rather than making a long introduction, I'm actually going to be dealing with a very short video presentation. Just in case I run out of time, my thought is that this video actually contains probably everything important that I really wanted and needed to say. So here we go.
[ Video Clip - Life is Short ]
[ Laughter ]
[ Applause ]
So that concludes my talk. Are there any questions? [Laughter] So, why begin with that particular traumatizing experience? I suppose there are a few points to be made and that is, that there are certain things in life I suppose that are predictable. We are all born into this world and eventually we all exit this world. Everything in between is individual and personal variation and we all spend different amounts of time along that sort of scary trajectory that you saw depicted, and those of us in palliative care are particularly interested in that final course and what can we do to try and make that final course as atraumatic as possible. If you look at the way that final course oftentimes can look, these are issues that sometimes seem rather ephemeral and difficult to tangibly get a handle on.
We actually in our research group and again, by background, I'm a psychiatrist but my primary activity is to do palliative care research. And we wanted to look at the trajectory of approaching end of life and look at the issue of what is it that sustains or undermines a dying patient's wish to go on living. And so, we use the Edmonton Symptom Assessment Scale introduced by Dr. Bruera and added a "will-to-live" visual analog. As you know, anything that scores high on these tests is indicative of a high degree of distress. And so, in this case example that was published along with cumulative data on will-to-live in the Lancet in 1999, we looked at the trajectory of will-to-live in this instance in a woman with end-stage colorectal cancer. And you can see when she initially came into the palliative care unit and signed on to our study, her will-to-live was somewhat lacking. It immediately seemed to improve and then over time was relatively stable. We collected will-to-live twice daily during the time that the patient was in the study and only during the time that they could give meaningful data. So if somebody was no longer competent and can no longer give what we felt was an accurate depiction of their subjective sense of will-to-live data collection stopped. And so, towards the end of her life, you can see that the will-to-live becomes less stable. The take home message being that will-to-live seems to be something that patients are able to understand, it can at least in a simplistic way be quantified and that it's fluctuant. It varies in response to a range of things. This is the same set of data, the same woman, the same pattern of will-to-live, but now superimposed looking at her subjective sense of the experience of pain. And I think what you can see is really quite a profound story and the story really can be summarized by, you know, the metaphor of tango. There's a very intimate connection. There is a dance, if you will, going on between this woman's experience of pain and something as fundamental and spiritual as her wish to go on living. In many ways, I think this is very emblematic of you know, what palliative care is about.
The truth is, that to do good comprehensive palliative care, we need to be attentive to the psychological, to the physical, to the spiritual, to the existential. The data here indicates that if we can make a difference on a domain of pain, for example, it could be that with the feeling of less pain in fact her will to live improves. Because of issues of not being able to assume causality, it could be that a spiritual intervention of sorts or a psychosocial intervention like coming into a hospital and now receiving the various supports that she needs that were previously on her plate before she came into hospital in the community have actually lowered her perceptions of pain and thus, the pattern that we see on this particular slide. Now, one of the insights that we in our research group gained on this notion of will-to-live or desire for death actually came out of looking at data that was emerging in constituencies where practices were taking place around death hastening.
And so, if you look at some of the earlier studies that came out of Holland, published by people like Paul van der Maas and others, they looked at not only the prevalence of what they called MDEL or medical decisions to end life but something that I think was even more subtle and for we in the palliative care world, something even more telling. And that is they did a study of physicians who were involved in those decisions and asked them why is it that that they think their now deceased patient sought out death hastening and their personal assistance. And that's the first time that the notion of dignity actually came onto our research radar because what they found from this group of physicians is that the most frequently cited reason that patients sought out a hastened death was because of a subjective sense of lost sense of dignity. I think it was nearly 49 percent, lost sense of dignity, pain, alone as a driver of assisted dying was only 5 percent. Pain is part of a constellation of symptoms with something just over 40 percent but again, at the very top of the heap, lost sense of dignity was the primary driver. And yet, if dignity is worth dying for, one would think dignity is worth studying. But when we turn to the empirical literature, we found that dignity was used in a whole variety of ways, there is no definitional specificity when it comes to understanding dignity and no one had done what we thought was a pretty fundamental study which is how do dying patients perceive this notion of dignity, you know. How did they understand it? Is it an important construct outside of the world of patient care as I say in the literature, people cite it and they cite it in a politicized way to support whatever positions they happen to hold or believe in.
So it was really as a result of that whole sequence of events that we decided to begin doing a series of studies on the construct of dignity and again, as all of other work to try and do so in a very robust and rigorous way so that we could add something hopefully to the database that would inform palliative end of life care and hopefully, help move the field forward in a way that was deemed to be evidenced based. So the very first study that we published on this was again a relatively simplistic approach using a quantitative methodology in which we created a dignity item modeled on the SADS interview, the Schedule of Affective Disorders and Schizophrenia, and we simply asked people to rate their sense of dignity. They were not given an a priori definition of what dignity was but simply asked what is your experience in the context of nearing end of life sense of dignity. Like all of the studies I'll show you, these take place within cohorts of patients who are within 6 months of end of life, that is the expectancy in terms of their admittance to the palliative care program. By and large, this is an older cohort, late '60s, early '70s and predominantly cancer reflective of the, you know, the primary patients who at the time these studies were being done would have availed themselves of palliative end-of-life care. What we found in this initial study is that, you know, about half of the cohort actually said they experienced no lost sense of dignity which means that occasionally or fleetingly, it's not atypical but we also found to our relatively great surprise, is that it was only a small number of patients, about 7 percent of patients over, you know, 200 plus who participated in this particular protocol experienced a significant or moderate sense of lost sense of dignity. So how do we understand that? Well, a couple of things come to mind. It could be bearing in mind that all of these patients are receiving quality, exemplary, state-of-the art palliative end-of-life care, dignity-related issues are less likely to be influenced. It would be fascinating to do a similar study in a cohort of patients who are being looked after in end of life circumstances where they don't have access or aren't able to avail themselves of comprehensive palliative care. The other possibility is that perhaps the way people perceive the notion of dignity is something that is very intrinsically held like the women who said to me, dignity is God given. So, so long as there is breath in me, dignity is something that is going to continue to be part of who and what I am. So, in essence, if she's saying that dignity is made of Teflon it doesn't matter what slings and arrows near end of life we throw at it. They simple bounce off.
What happens if we start to differentiate those whose dignity is intact versus those whose dignity is undermined or suffering as a result of lost sense of dignity or what I call a fracture or broken sense of dignity. Well, if we look at the psychological variables there are very few surprises. These patients have more psychological distress. And perhaps as we might assume given the whole on data it could be the dignity or lost sense of dignity is part of a final common pathway leading to a death hastening request, you know, lost sense of dignity therefore, higher desire for death, low will to live, psychological distress leading to a wish to no longer embrace continued existence. Terms of physical variables, again, these people report if their dignity is fractured that they are in more physical discomfort, everything from pain, to bowel functioning and even something as fundamental as physical appearance. We call th1s in our publications and in our writings the intimate dependencies of care. So things like bathing, dressing, toileting, if this was a talk on compassion, what I would be saying is that for the most part, these are things that are so common, I mean this becomes part of the background noise of our professional lives. We see this every day and in every ward in every hospital, not only here in the United States but in Canada and around the world. So this becomes part of routine care, but to really think about issues of compassion and connecting to patient experience, you need to at least for a moment put yourself in the position of either you or someone you love requiring assistance with these intimate dependencies. In which case, I think, you know, we will all acknowledge that these are the things that turn a person's world upside down. I actually think that it would be very interesting to do some studies that were specifically focused on these intimate dependencies because they seem to be so indelibly connected in the minds of many as to whether or not life itself is worth continuing on with.
Quality of life, again, no surprises, those with fractured dignity were more likely to experience an undermining of dignity. Now the--I mean both the danger and the excitement of using quantitative approaches is that you can create the illusion that you get it, you know, you say I can run some regression models here and we can figure out dignity. We can pretty much have it nailed to the wall. And what we did when we did those modeling exercises, we tried to determine is there some hierarchy of importance in all of these variables. You know, if we're looking at issues like pain and dyspnea and these existential issues, is there a way of being able to predict when you look at these cumulative data as to what is the most powerful or ardent predictor of sense of dignity. And in our modeling we found that this notion of appearance or what I understand, you know, how people perceive themselves to appear turned out to be the single most predictive variable in determining variance or fluctuation in sense of dignity.
Now, the story that I always tell along with that because it--this is simply how it occurred to me is that as I was looking at the output for this particular study, you know, this notion of appearance came out of, you know, on top in these regression models, it took me back to a memory many, many years earlier when I was a fellow at Memorial Sloan-Kettering and I'd been working with the Kathleen Foley on neurooncology units. And I had been assigned to care for a very young man who was dying of a primary brain tumor. One day I walked into his room and, I mean, this man was very close to death. And it was you know a very tragic scene, this was a young man, primary tumor of the brain, no longer conversant, really not communicative in any fashion, and yet that morning he managed or somehow it was managed to communicate something to me that resonated for many, many years because on his bedside table, he or someone had placed a photograph of himself when he was in a state of perfect health and he'd been a bodybuilder. So there's this incredible startling juxtaposition, these 2 images, these skeletal remains of this young emaciated cachectic man and this robust, kind of Adonis-like bodybuilder. And years after the fact when I was looking at the data, the epiphany and the moment of epiphany really was this is how I need to be seen. You know, I finally understood after all these years what the message was. This is how I need to be seen or at least this is how you need to be able to appreciate me or appreciate who I was if in fact you're going to see everything that I as a care provider need you to see. It was such an epiphany that I actually wrote a separate article aside from the empirical findings called Dignity in the Eye of the Beholder. The single hokiest title of any paper that I've published but I have some journalist friends who say you should try and choose a tittle that captures the essence of what the rest of the article is trying to say because half of the people in the room aren't going to bother to read the article in its entirety. And so, Dignity in the Eye of the Beholder really in its title says we in healthcare are the beholders of care and what patients are looking for is the reflection in our eye that is affirming of their sense of dignity. Now, I said that using quantitative approaches is very powerful and kind of seductive but it can be illusory. Because obviously, dignity is far more textured and far more layered than simply an ordinal scale of 1 to 10. You know, it would be like trying to say we can understand everything about love by simply rating it from 0 to 10 and say that there is really nothing else to be said and Shakespeare and others would say, you know, you are living in a different world, my friend. So we were not Shakespeare sadly but our way of approaching this was by doing the qualitative studies that really get you into the nitty gritty of understanding dignity.
Speaking to patients, finding out when does dignity work, when doesn't it work, when it is affirmed, when it is disaffirmed, to really find out what are all of the things that might influence a patient's sense of dignity. What might support it, what might undermine it? And eventually, this led to a qualitative but empirical model of dignity in the terminally ill that we published in a variety of papers including this one, Dignity Conserving Care: A New Model for Palliative Care that came out in the early 2000s, I think 2003, in the Journal of the American Medical Association. What does this model look like? Well, it looks something like this and what this shows is that there are three primary domains that you or we as healthcare providers need to be attentive to. There are illness-related or illness-mediated issues that can have an influence on sense of dignity. There are what we call the dignity conserving repertoire, which really is a repertoire of issues that have to do with personhood. There's psychology, spirituality, we sometimes--well, we need to be mindful that people come to us with an entire complex history and makeup, and experience. And then finally, there's the dignity or the social dignity inventory, things in one's social environment that can affect sense of dignity.
Now, if we go back here and you look at this, you might say well, this seems like a fairly typical math or model of palliative care, symptom distress, you know, looking at cognitive acuity, treating delirium, optimizing functionality. But if you start to look at some of the things that emerge on the map and again, I say to you, this is not a Chochinov model of dignity. I haven't died, not even once. This is informed that even though I look this bad, I promise you. But this is informed by patients and what patients have said is that in many instances, medical uncertainty, death anxiety, not knowing what to expect can be an assault on sense of dignity.
Another hat that I wear, I lead a project in Canada called the Canadian Virtual Hospice, virtualhospice.ca. We have over a thousand Canadians every single day coming to the website for information, support, we even answer individual questions with personalized responses. But the point is that the most frequently downloaded article from the Canadian Virtual Hospice is an article called When Death Draws Near, which again I think validates exactly what the model is implying which is how are people supposed to know? You know, how can we anticipate what it's going to look like? I mean no one practices dying. So we don't necessarily understand what to anticipate. If we look at the next column, again, all things having to do with personhood, the models says, are important in terms of providing care, offering opportunities for affirmation. One of the important clues that emerged in this, which has implications in terms of the dignity therapy, which Walter mentioned is a recent publication, is the notion of generativity. And this is the idea and borrowing from Erik Erikson, the developmental psychologist, that for some people, the idea that life will not have had a ripple effect, that there will be no lasting influence or in fact, that I will soon be forgotten. So the idea of being able to create something tangible or lasting that might transcend the event of even that individual's death turned out to be an important clue to some of the later work that we were to do. And then finally, we outside of that individual or the environmental factors can influence sense of dignity.
So yes, we need to respect privacy counterbalanced by social support. Care tenor is a term that we've introduced that again from patients we learned that the tone of care, you know, all of the nuances, the subtleties. I presented this once in one of the oncology nurses who was in the audience said well, I've always thought about that as the fragrance of care. You know, it's a kind of thing the patients can smell, they get it. And what they get is whether or not you in looking at them or in looking your eye, are they seeing nothing in which case they feel they vanished. Are they seeing a body part or a blood aberration in which case they feel they are their illness, or do they see a reflection of self in which case they sense that personhood in spite of everything that may be happening to me physically and bodily, personhood is still somehow being acknowledged and I can tell because of the tone of care. So if personhood is such an important feature of care, how can we begin to do things that put personhood on our own radar that keep us mindful of personhood? And how can we continue to engage in understanding the poignancy and the importance of personhood? I suppose there are a couple of ways of thinking of this and there's sort of a stick in a carrot. The carrot is that if we do this work well, patients are more satisfied, families are more satisfied. There's no question that you can go about the technical aspects of care. And so at the end of day get scathing reviews because patients are going to feel somehow that they were processed.
You know, I mean, and we've all felt that way. You don't have to be terminally ill to feel that. You walk into a doctor's office and you’re kept waiting or you call and you're being put on hold. And when you're well, you have a thick enough skin to say, uh, you know, they're such bozos there, you know, but we brush it off. But when we're less well, our skin is thicker and so we're less likely to be able to brush things off. So the carrot is here's an opportunity to really bolster the kind of care that we do. The stick is that if we don't do this well you are more likely to be sued or called in front of a regulatory body for not doing this well than for any other reason. The empirical evidence of that is lovely there. One of the studies was one that I've mentioned to others in the last couple of days, Robyn Tamblyn, a wonderful Canadian researcher who had did a study that she published in JAMA and she looked at the correlation between how you score under communication skills portion of your specialty examination and then in the next 8 to 12 subsequent years the likelihood that you will be reported to your regulatory agency for some complaint. And of course she found that there absolutely was a correlation. An 80 percent of instances for--as to why people were being complained about had to do with a paucity of communication abilities. So, if the carrot or the stick, but either which way you look at it, these are things that can't be ignored or we ignore them at our jeopardy.
Let me tell you just a lovely example of how being sensitive to the issues of personhood can make the difference between getting it so right and getting it so wrong. This is Anatole Broyard and he was the former book review editor for the New York Times. Broyard wrote a wonderful book called Intoxicated by my Illness. For those who haven't read it, I highly recommend it. It's outstanding and extremely entertaining and funny. He was a brilliant and engaging writer. He eventually died of prostate cancer and during the course of that wrote this book, Intoxicated by my Illness. Here's a brief one-page vignette that I think really helps make the point. "A hospital is full of wonderful and terrible stories and if I were a doctor I would read them as one reads good fiction and let them educate me. I'll give just one example of what I mean. A friend of mine, a writer, was dying in a hospital of lung cancer and before he died he wanted to marry the woman he'd been living with. It was not exactly a sentimental gesture. They'd ceased being lovers and had become roommates but he wanted to leave her his apartment which was rent controlled. He felt that she deserved it for her faithful attendance at the hospital and was only by marrying her that he could pass it on. Now, he told me this before he lost the power of speech as a result of a stroke suffered during an exploratory operation. And he also specified that I was not to arrange the marriage until I saw that his case was completely hopeless. When I saw his time was approaching, I went out as he'd asked me and I found a rabbi. The rabbi was a rather fuzzy intellectual with university air and he quizzed me at length about my friend's religious convictions. I could say only that he'd written exclusively about Jewish characters and the kind of sorrows traditionally associated with them. He asked me whether the bride was a practicing Jew and I replied that in my opinion she practiced, unconsciously.
Grudgingly, the rabbi agreed to come to the hospital and perform the ceremony. My friend was in a ward with 8 beds. The 7 other beds were occupied by Latin Americans and the salsa blared from the radios all day long. There was a continual stream of visitors all speaking Spanish at top speed. The rabbi was upset by the salsa but he pulled the curtains around the bed and began the ceremony. He'd been chanting in Hebrew for only a minute or two when a young doctor who'd been treating my friend bursts through the curtains. ^M00:30:01 He seemed to think that we were encroaching on his jurisdiction, although he had already been granted permission by the head of the ward. When he understood that the wedding was taking place, the doctor leaned over my friend who'd been speechless for more than 2 weeks and asked him in a loud hectoring voice "Do you love this woman?" Do you want to marry this woman?" Here was a doctor intervening in someone's life without understanding anything about it. If he had known his patient he might have appreciated the pathos of the scene for which the salsa supplied an obbligato. But he saw nothing, understood nothing."
Now, this is not by the way meant to be an exercise in doctor bashing or healthcare provider bashing. The truth is all of us I think either do a very good job of this or want to do a very job of this. But medicine becomes a very busy place and the technicalities of care and the time pressures sometimes push these things to the margins.
And so, what I'd like to do is to suggest some very simple ways of trying to keep this on our personal agenda. A number of years ago I wrote an article called the ABCDs of Dignity Conserving Care. This was in the British Medical Journal. And I was asked to sort of summarize some of the work about what we had done on dignity and wrote the article, sent if off to the journal, got back wonderful reviews along with an accompanying letter of rejection. And I thought this isn't how it's supposed to work. I mean, ask Dr. Bruera, he will tell you. You write a good article. You get good reviews. They publish. That's their piece, you've done your piece. So I decided to write them back and say well, I don't get it. You know, you give me good reviews, you know these are good solid reviewers so what's the problem here. And they said well, the problem is you've given us a review of your research and you've told us why dignity conserving care is important but you haven't told us how to do it. And I said okay, so in 3,000 words or less you want me to review the literature, you want me to make the case that dignity conserving care is important, and you want me to tell healthcare providers how it needs to be done. And they said yes, that's absolutely correct. I said fine, I'll do it. I had nothing to lose by the way, I had already been rejected. It doesn't get worse than that [laughter], although, I'll share an anecdote.
Yesterday I got a rejection from a journal and they said you know, we're sorry, we've--you know we sent it out for review. It's now being returned. And you know we're not interested and pass it on. Later on in the day, they sent me an apology letter. They say were sorry, the letter was inaccurate. We got your article and we didn't send it out for review. We just rejected it. [Laughter] And I'm thinking about writing them back and saying you know, it's sort of like getting an e-mail saying you're dead and then getting an e-mail later saying we apologize, what we meant to say is you're really dead.
I'm hoping that they have a sense of, that they have a sense of humor.
So anyways, I began thinking about it so how do you, how do you do this? If we make it too complicated, if we say you know, you need to get in touch with your inner child and be Freud and Nietzsche and--well, I mean most of our medical colleagues are going to say it sounds complicated. You seem enthusiastic about it. I'll send you a consult. You know, I have other things to occupy my day and my time. If we make it too simple and we tend to make it simple, so simple that we say, you don't need any training, just trust your gut. You know, just do whatever feels right. Be a good person and trust your gut. And not everybody has a talented gut. And the reason we end up on the front page of the newspaper is people just aren't thinking. You just kind of mess up and this is where the idea of creating some kind of a simplistic but easy mantra around dignity conserving care came to me. In internal medicine we have the ABCs of critical care. And every physician is expected to know airway, breathing, circulation. If Dr. Bruera starts to choke to death and I am the first doctor on the scene and I hold his hand and I look deep into those eyes of his and I give him professional empathy. [Laughter] As he chokes to death, the rest of you would say that is the most ridiculous thing I've ever seen. And if I said well, I'm a psychiatrist. I mean, you know, I started to ask him about whether this you know reminded him of some early childhood trauma and took him back to you know, his early years in South America. You would say, I'm sorry, you're a physician and no physician should be absolved of knowing something so basic, so fundamental. But we don't say the same thing about the humanities of care. We say do whatever. You know make it up. You know, just you know try not to mess up and be, you know--I remember saying to one, a very esteemed colleague who I won't name when I was talking about my difficulties of getting this article published. She said to me well, just tell doctors not to be jerks. And I said well, you know, that's very cryptic but it's not going to get me into the BMJ.
So, so the mantra, the ABCDs of dignity conserving care are trying to introduce into the medical parlance the idea that there are core efficiencies of care. That the humanities of care contain these basic elements and that no one should be absolved from them, the idea that oh, you know, he's a very good technician. You know, he's terrible with patients. Well, you know, should we be moving on in our kind of maturation with the kinds of program that Dr. Baile and others has developed to say well, if he's a very good technician, the automobile industry might really need his or her services. But human beings have an emotional and spiritual and psychological dimension that just needs attention and needs exquisite attention.
So what is the A? The A is attitude and it is about your attitude, about our attitude. And what we've learned is that the care provider attitude has a profound influence on the way patients experience their care. I've already shown you that through previous data. And because I don't like to sound like I'm on a soap box or pontificating or one of those touchy feely psychiatrists that they invite every once in a while through a sense of obligation but none of its core, I always go back to the fact that look, this is not about what I think or what I know, this is about data. This has to be empirically driven arguments. If it's going to resonate with you know the nay sayers.
So, here's a different study that we did which said to dying patients which of these things would you ascribe to your sense of dignity. Thinking about how life might end, 42 percent said yes, that's a dignity issue, issues around depression anxiety, maybe 60 percent. Not having a meaningful spiritual life or no longer feeling like who you were. A number of the conversations we've had the last few days have talked about the issue that the psychology of illness is really the psychology of loss. When we begin to lose sense of identity that would lead to no longer feeling like who you were and the data validates the fact that 75 percent of people said that this is something that they would ascribe to their sense of dignity a profound question in end-of-life circumstances. But cutting to the chase, the single, highly, most cited issue that people ascribe to their sense of dignity is feeling a burden. In other words, I feel no sense of value. I have no worth. I am less valuable than an inanimate object. And not being treated with understanding and respect. Well, that implicates those who are in a position to either offer respect of withhold respect. So the data says, I mean, and again, it doesn't matter if you say well, this all sounds kind of touchy, feely and I'm not sure I buy it. That really doesn't matter. The data says that your attitude, you are in a position to confer or withhold respect, is the most highly prevalent issue that people would ascribe to their sense of dignity. And therefore, it needs to be within your core competencies.
Now, it's not as easy as it sounds because if you're going to think about attitude you have to begin to develop this kind of mindful practice, you know. So how would I be feeling in this patient’s situation? What's leading me to those conclusions? Am I making some assumptions here? And if so, are those assumptions starting to shape the way I perceive what's happening? Are my attitudes enabling what's happening or are they actually undermining the therapeutic transaction that's taking place. Again, the issue is that we tend to believe what we see. All of us are socialized in a way that we walk in, I mean, by virtue of our humanity, we walk in with certain core biases and assumptions. That is not an accusatory statement. It's just a statement of a fact. And so we look at what we see and we say, I think I get it. I think I get it from where I'm standing. But if you stand either one step to the right or the left of this particular frame, of course, the picture and understanding changes profoundly and entirely. And that's what we need to be mindful of every time we're with a patient. We don't necessarily get it. I told some people an example of a woman that I was seeing for a study trying to understand her emotional adjustment to her cancer illness. And so, when I broach the issue of how she was adjusting to being ill, what she said is, you don't get it. And I said, what do you mean I don't get it? She says, you know what, I've had a good life.
I've lived to a ripe old age. I'm coping okay. But if you want to know what my angst is about. My son who is 45 years old is being treated in a hospital across the river from Saint Boniface here and he is dying of pancreatic cancer. That's the essence of my angst and the truth is, if you don't stop and ask to say we can't make this assumption that we know what's going on until we make that inquiry what's going on. B is for behavior.
This is again is quite banal. But people nevertheless do forget. So I mean, do we stand, do we sit, do we meet someone's gaze, do we avert someone's gaze. All of these things are subtleties. You know, it's part of that care tenor or that fragrance of care that gives the sense of whether or not what's happening here matters or doesn't. You know, if periodically through the course of today's talk I was glancing at my Blackberry, well, that would be probably be poor form and it would show that I'm a wee bit distracted and maybe I'm not paying sufficient attention to you. Again, you may say well, that's really rather subtle. But when you're the patient who's been lying all day waiting for that person to come in and deliver whatever message he or she has to give, it's those subtleties again that we just need to be mindful of. Even something as simple as asking permission to do a physical exam, of course, I mean the exam is going to take place. But by asking permission you're acknowledging that this is your body and what's about to take place needs to be discussed and negotiated. And you ultimately, the patient, are in charge. And certainly, the rationalization that lack of cure should be an excuse for lack of contact has absolutely no place within clinical practice.
And we've all been part of experiences where, you know part of a busy service, and the last person who may be seen on rounds is the person for whom you know it's thought there's the least curative opportunity. And yet, in some ways, we have it in reverse. Not that, not that cure is something to be avoided in any way shape or form. We have all become very seduced understandably by the technicalities of medicine and the magical possibilities that it has yielded. Well and good but not at the exclusion of humanities of care is my point.
Now compassion is sort of the big one. And I'm sure Dr. Baile has been asked this many times, and that is we can put people through the ropes in terms of you know teaching them to sit and make eye contact and turn off your Blackberry. But what about something as fundamental as the ability to feel compassion which is a deep sense of awareness of suffering of another with the wish to be able to somehow respond to it or to mitigate it in some fashion. People attempt to invoke compassion in a variety of ways, literature, philosophy, meditation, reflection. In the BMJ article what I try and do is make the point that one size doesn't fit all and one approach doesn't fit all. Find something that resonates as meaningful. And that is likely to invoke or engender compassion in your particular instance. It may be hardwired in you. It may be something that you acquire through clinical practice or through life experience. You know probably, you know, having a loved one who is ill, bringing a child into this world. Nothing makes you feel more vulnerable. And vulnerability is part of, I think, if there's any one key element that's required for to achieve compassion it's the awareness of your own vulnerability. That you like your patient are mortal. You like your patient are living a path that is exceedingly uncertain. If you don't get that then I think trying to understand compassion or feel compassion is likely something just beyond your reach. From a distance, everything in life and everything in medicine can start to sort of fade into a shade of gray. You know it becomes--one thing has become indistinguishable from the next but when you start to connect something in terms of detail, and this is true of a story, it's true of a patient, it's the detail that rises, a sort of head and shoulders above whatever happened in the clinical transaction. And I'm sure if I ask you to remember the patients that continue to rattle in your brain, it's some particular element of transaction that you remember years after the fact. So using the idea of storytelling as a metaphor for clinical care.
This is a black and white photograph, probably not unlike most black and white photographs that you've seen, and if I were to switch slides in a second you would say the likelihood of my remembering that photograph is completely negligible. It is just not going to happen. But let me tell you a quick story about this and I would dare say by engaging you in a small detail or in a few small details I would hazard a guess that you will not only not forget this picture but you probably won't forget this story if you and I run into each other a decade from now. So, and this isn't going to take a lot of time. So which is to underscore the fact that connectivity and making connections with patients doesn't have to drag each of us into being a psychotherapist that needs to now place a patient on a couch for an hour which would make sure that not only will you never get of your clinic but you'll have to move a cot into your clinic if you are going to continue on practicing medicine.
So this picture is William Osler. And William Osler was the founder of modern medicine, wrote the first textbook in medicine. He worked at McGill in Canada so there's the Canadian connection. And then he worked at Johns Hopkins. Osler was very much an empiricist. He was a pathologist. This was a man who liked cutting up dead bodies and digging inside and sort of trying to sort out the physiology and what was connected to what. But one day according to his biographer, Michael Bliss, one of his colleagues was standing outside of Sir William's study, knocked on the door. There was no answer but he could hear inside that Sir William seem to be choking to death. His colleague ran inside of the office and there was Sir William Osler trying to shove a nasal gastric tube down himself. And the colleague said Sir William, what's wrong? What's going on? Can I be of some help? Why are you doing this? And Osler said and I won't try and imitate the way he sounded because it would discredit me. I think I would sound just too silly to carry the rest of this off. What Osler apparently said is well, you know, we place these down many patients. I thought I ought to know what it feels like.
So what is the message? The message is that there are some things in medicine that can be measured and we ought to measure them. And there are some things in medicine and in medical practice that really are beyond the measurable but they're vital to understanding patient and patient experience. I think that's what the story says but it also says it in a way, by the way, that is from a source that can't be dismissed. And that's one of the interesting things, thinking about medical education and pedagogy. If we, if I followed my colleague's advice and said you know, the main message is doctors, don't be jerks. Everyone would get up and say you know, that guy really was, I mean, he had really nothing very valuable to say and he was very punitive. And you'd be absolutely correct. But when it comes from an impeccable source like William Osler who says you know, the likes of a William Osler can say that the non-measurable still ought to resonate, still ought to register on our list of things that are important for patient care, then who are we to dismiss such important information.
Finally, the D of dignity conserving care is for dialogue or conversation. And we know that conversations are the meat and potatoes of what we do with patient's every day. Some conversations are not only complex, but the complexity is baffling and profound. If you think about the sort of conversations to enroll patients in clinical trials, these are excruciatingly difficult communications to try and do effectively and meaningfully. So the point that I make is that it doesn't have to be fancy and it doesn't have to be time consuming. Simple acknowledgments, this must be difficult, this must come as quite a shock, I'm sorry to be telling you this, this isn't the way that I hoped things would go. I told somebody the other day an anecdote where I was walking into a washroom and the clinic door adjacent to that, to me, that washroom, was being entered by a medical oncologist--hematologist-oncologist specializing in lymphomas, leukemias. And as the 2 doors were shutting the last thing that I heard Dr. Johnson say to his patient was so how was that vacation? Now, there's no illusion on my part that 5 minutes later or 3minutes later, Dr. Johnson and these patients were looking through the, you know looking through the set of slides and the set of pictures that they had and you know sharing souvenirs. It wasn't happening. I mean this is a very busy medical oncologist. But in the nanosecond, you know by just including that tone of care, that fragrance, he was able to say, I get it, you know.
The people in dialysis came to me because they were saying that you know, dialysis is so technical and there are--and it's so rushed in terms of patients that need to be put on and off machines, that it's hard not to experience patients as kidneys on legs. So I didn't make that up. I mean, this would only come from people who are working in dialysis for a long time.
So how do we not think of people as kidneys on legs? Well, we need to do something even subtle that starts to put personhood on radar. So, one of the questions that we included in that BMJ article was this question which should I know about you as a person to help me take the best care of you that I can? We--after the article was published I took a second look at this. And we coined it, the patient dignity question, the PDQ. It sounds sort of much more scientific and it seems a little bit more hard edged than go ask about personhood. You know, you can almost imagine somebody on ER or one of those medical shows saying I want you to go to a PDQ stat. That's about as funny as I get by the way so if--I mean it's very hard to introduce humor into a talk about palliation, but I'm doing my best here, so cooperate with me. So we looked at this question a second time and decided to write a clinical protocol to the Canadian Cancer Research Institute, and the protocol works like this. We ask the patient this question. Oftentimes, it's a--well, it's a brief conversation and this is the framing of that, of that intervention, 5 minutes tops. We asked this question, we get them to discuss what we need to know about them as a person, and this is not about psychotherapeutic or psychoanalytic uncovering. It's not about their deepest, darkest, shameful secret. We're not looking to make them feel more vulnerable. We want to know what is it you would want everybody walking in this room to know about you. Sometimes it's being something as simple as I'm deaf in my left ear. I'm afraid of needles to something much more profound. We listen to that. We trans, we do a paragraph or two summary. We come back to the bedside a few minutes later for three purposes. To read it, to make sure we got it right, and the final thing, the litmus test is do you want this on your chart, because if this is an accurate lens that you want people to look through in terms of how you are seen then you would expect that's something that they would want on their charts.
We've done this with just over 60 patients and with one or two exceptions, every patient has said, this ought to be on my chart. This is a summary from one PDQ. And this is an aboriginal woman who was in her late 60s and it reads as follows. Mrs. Epps says that because of the residential school, she always had a hard time trusting people. She in fact moved 82 times so as not to let anyone get too close to her. While this has gotten better over time she still struggles with being able to trust people. She wants to but it's hard for her. She sometimes worries that she won't be told the whole truth or that people will see her as not being deserving of the whole truth. She appreciates people being friendly towards her but is frightened of authority figures. Authority scares me but I'm not as bad as I use to be. And I would suggest to look after this woman and to not know this would be like me attempting to walk out the back of this room with the lights off. Is it doable? Yes. Might it be messy and highly inefficient and hazardous? Absolutely. We have 5 more minutes, right? We started 5 minutes late so I've got 5 minutes to kind of wind things up.
No charge, good, okay. Just want to make sure that I don't break the cardinal rule that Dr. Baile set which is end on time. So we've also looked at the work on dignity to say is there a dignity-specific intervention that we can develop? Is there a psychological way of being able to enhance, help safeguard sense of dignity. And so we've looked at the dignity model that I've shown you and said, generatively matters. So whatever we do psychologically, we want to make sure there's a lasting tangible product that will transcend death. Personhood matters so we need to be asking questions about what's important to you. You know, what had been the important memories or relationships or the important things you've learned or things you take pride in. And tone of care is important. We need to do something in the here now that says we value what you say so much so that we want to help you to preserve every word that you utter. And so dignity therapy engages patients in a brief conversation, usually about an hour in which they share the things that matter. The things that they feel need said. It is facilitated by a therapist so that patients are loaned the emotional and energy, an intellectual energy that they would need to help construct this document. We record that, we transcribe it in a very quick turnaround time, we edit that document so we can return it to the patient for them to be bequeathed to a loved one.
What have we found out about dignity therapy when we've done trials, open labels phase 1 trials between Canada and Australia? We found that people say this is highly satisfactory, enhance the sense of dignity, meaning, purpose, and in fact would recommend it to other patients and families. Family members say the same thing, not only that in hindsight this helped their loved one. 65 percent of them say it helped my loved one as much as anything else that was done on behalf of them during their time of nearing end of life. And they too say during a time of our now grieving, this has been a source of comfort and I would recommend it to other people who are anticipating the death of a loved one.
Finally, we've recently published a randomized trial between Australia, Canada, and the United States. We've enrolled over 300 patients into this study. We reported our findings in the Lancet Oncology three arms, standard palliative care, an attentional focus that we've called client-centered and dignity therapy. What we found is that because base levels of distress in this population were exceedingly low we didn't show significant differences on measures like depression, anxiety, desire for death. But we had a post survey that was done by patients across all three arms. It was a 25-item survey. Dignity therapy outperformed the other two arms on every single item. You can see the areas where it outperformed it relatively significantly, you know, as helpful as every other aspect of healthcare, unfinished business, feeling that life is more meaningful, purposed and satisfied with psychosocial care. But the areas where dignity therapy hit it out of the ballpark with respect to both other arms include it being helpful in enhancing quality of life, increasing sense of dignity, being helpful to family members and even changing the way others perceive or see me.
We've also done this with families now in the randomized trial. And again, this is preliminary data that's unpublished but essentially saying that indeed families found dignity therapy significantly more helpful than the standard arm or the intentional control believing it was helpful to their loved one. An important element of care, helpful in their time of grief and would recommend it to others. Dignity therapy has taken place in a variety of places around the world. There are training sessions that we hold in Winnipeg now and San Diego. I'm just back from Perth, Australia. And trials that continue to be done and come out in various areas of the planet. But in closing, my final work would not be with regards to dignity therapy. Dignity therapy is not a panacea. It is an interesting psychological intervention that may be helpful to some. But I think the broader message is that dignity has salience in the delivery of end-of-life care and I would suggest in the delivery of healthcare. I think some of the things that I've shown you helped to either rescue or reclaim dignity as a philosophical and political issue. And hopefully, reclaim it so that it has meaning and resonance in terms of your clinical care of patients and families. Thanks so much.
[ Applause ]
So I guess we have time for one or two questions. Anyone, question for Dr. Chochinov. So it occurs to me, Harvey, that patients that are often reluctant to bring out aspects of their personal lives with their clinicians. So you know if we remain passive toward exploring who a person is then we're really not going to hear anything about it, you know, because they won't take up our time. But, you know, the new thrust of course on oncology is to deliver personalized cancer care. And I think what we've seen today is that this is the real personalized cancer care because if the cancer care doesn't work, you really still need to treat the person so that was really terrific.
Thank you all for coming.
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