1 00:00:02,456 --> 00:00:05,630 Nobody wants us to be seen as just a patient. 2 00:00:05,630 --> 00:00:11,798 They want to be seen and understood in terms of what ails them, but not at the expense of who they are. 3 00:00:14,240 --> 00:00:22,533 And I can tell you that the responses to the question, so what do I need to know about you as a person, are nothing short of profound. 4 00:00:22,533 --> 00:00:28,394 And they change the outlook of the healthcare provider indelibly. 5 00:00:29,515 --> 00:00:30,942 We need to get dying right. 6 00:00:30,942 --> 00:00:32,796 I mean, it only happens once for each person. 7 00:00:32,796 --> 00:00:34,016 We need to get it right. 8 00:00:34,016 --> 00:00:40,118 But as well, it has ripple effects that are felt by everyone who will survive that death. 9 00:00:44,502 --> 00:00:46,443 Welcome to What's the Big Idea? 10 00:00:46,443 --> 00:00:52,245 I'm your host, Michael Benarroch, President and Vice-Chancellor of the University of Manitoba. 11 00:00:52,245 --> 00:00:54,216 Today, I'm joined by Dr. 12 00:00:54,216 --> 00:00:54,749 Harvey Dr. 13 00:00:54,749 --> 00:01:02,850 Harvey Chochinov a Canada Research Chair in Palliative Care and a Distinguished Professor at the University of Manitoba, his alma mater. 14 00:01:02,926 --> 00:01:03,626 Dr. 15 00:01:03,626 --> 00:01:08,926 Chochinov is an Officer of the Order of Canada and a member of the Canadian Medical Hall of Fame. 16 00:01:08,946 --> 00:01:21,066 He is also the co-founder of the Virtual Hospice, the world's largest repository of information and support for patients, their families and care providers. 17 00:01:21,166 --> 00:01:33,266 With over 350 publications and a lifetime of accolades, he joins me to share his big and profound ideas on how we must approach end-of-life care. 18 00:01:36,204 --> 00:01:36,714 Welcome. 19 00:01:36,714 --> 00:01:38,295 It's great to have you here today. 20 00:01:38,295 --> 00:01:40,535 I just wanted to start what's your big idea. 21 00:01:40,535 --> 00:01:45,056 And it turns out to be one of the titles of your book, Dignity and Care. 22 00:01:45,056 --> 00:01:50,278 Tell us a little bit more about this idea and maybe what it looks like in practice. 23 00:01:50,278 --> 00:01:50,938 Sure. 24 00:01:50,938 --> 00:01:55,919 A number of years ago, I published an article that was called The Secret is Out. 25 00:01:55,919 --> 00:01:58,900 Patients are people with feelings that matter. 26 00:01:58,900 --> 00:02:05,422 And when I think about dignity and care, in some respects, that really in rather sort of cryptic pithy way. 27 00:02:05,494 --> 00:02:15,903 addresses the big idea that patients are people with feelings that matter and to kind of dig down a bit deeper in contemporary medicine, we tend to think of it just in terms of 28 00:02:15,903 --> 00:02:27,533 transactional issues, things that we do to patients, know, drugs, we give them surgeries, give them radiations, we administer and so on, the things we do too. 29 00:02:27,693 --> 00:02:33,758 But what we really don't pay much attention to is the relational, the interactional. 30 00:02:33,918 --> 00:02:45,291 And as it turns out, certainly in the kinds of work that I'm doing and others have looked at, if you fail to provide the relational along with the transactional, then patients 31 00:02:45,291 --> 00:02:45,701 suffer. 32 00:02:45,701 --> 00:02:57,985 There's more discordance around goals of care, people are less trusting, organizations lose reputational capital, and even healthcare providers who become disconnected from the 33 00:02:58,085 --> 00:03:01,612 human drama, the pathos of what happens in clinical medicine. 34 00:03:01,612 --> 00:03:03,162 become more vulnerable to burnout. 35 00:03:03,162 --> 00:03:07,484 So I would say that that is a big idea of dignity in care. 36 00:03:07,484 --> 00:03:09,294 Now, just think about your career. 37 00:03:09,294 --> 00:03:17,046 Was there a moment somewhere where you kind of thought, wait a minute, it's not just about being transactional. 38 00:03:17,046 --> 00:03:18,806 There's so much more to this. 39 00:03:18,827 --> 00:03:24,348 My background is in psychiatry and I've also been a researcher in palliative care for many years. 40 00:03:24,348 --> 00:03:31,470 And at least at the outset of our work, we were looking at fairly kind of traditional psychiatric issues like 41 00:03:31,470 --> 00:03:34,832 depression, anxiety, hope, desire for death. 42 00:03:34,832 --> 00:03:46,290 But we then discovered that the issue of dignity was highly salient to patients near end of life because, again, looking at data that was coming out of the Benelux countries, it 43 00:03:46,290 --> 00:03:53,386 turned out that loss of dignity was the most highly cited reason as to why patients were seeking out a hastened death. 44 00:03:53,386 --> 00:03:56,868 So we began doing a series of studies on dignity. 45 00:03:56,868 --> 00:03:59,874 These were really the first, the only empirical studies. 46 00:03:59,874 --> 00:04:02,055 that had been known on the issue of dignity. 47 00:04:02,055 --> 00:04:06,796 And the aha moment came as a result of one of the findings in the study. 48 00:04:06,796 --> 00:04:18,599 So we asked patients to rate their sense of dignity along with other things that might correlate with their sense of dignity, pain, anxiety, a whole variety of experiences. 49 00:04:18,599 --> 00:04:26,501 The thing that turned out to be the single most ardent predictor of sense of dignity was how patients perceive themselves to be seen. 50 00:04:26,501 --> 00:04:29,132 In other words, even though this is driven by data, 51 00:04:29,174 --> 00:04:37,618 Metaphorically, the thing that is most important for patients is that they see in the reflection in the eye of the healthcare provider an affirmation of self. 52 00:04:37,618 --> 00:04:39,738 They see the entirety of who they are. 53 00:04:39,738 --> 00:04:50,523 So if they just simply see reflected in the eye of the healthcare provider, a problem checklist, a differential diagnosis, then they feel that personhood has been eclipsed by 54 00:04:50,523 --> 00:04:51,623 patienthood. 55 00:04:51,623 --> 00:04:57,856 But on the other hand, if they can see the entirety of who they are, you know, that there's recognition that 56 00:04:57,856 --> 00:05:05,078 I am not only the illness I have, but I continue to be the person that I've always been, then dignity, personhood is intact. 57 00:05:05,078 --> 00:05:17,241 So that was the aha moment, which led to also the realization, by the way, that how healthcare providers see their patients, this perception becomes a very important 58 00:05:17,241 --> 00:05:23,963 parameter, a very important dimension of what we need to understand if we're going to deliver good quality palliative care. 59 00:05:23,963 --> 00:05:26,274 And I would say if we're going to deliver good medicine. 60 00:05:26,674 --> 00:05:27,674 And so 61 00:05:27,754 --> 00:05:31,295 in the definition of dignity is really being seen. 62 00:05:31,635 --> 00:05:32,395 Very much so. 63 00:05:32,395 --> 00:05:34,636 This idea of affirmation. 64 00:05:34,636 --> 00:05:44,759 Now, we've done other studies on dignity that have looked at qualitative work and what you find out, and we've published an empirical model of dignity in the terminal ill, is that 65 00:05:44,759 --> 00:05:54,218 there are multiple variables that can influence sense of dignity from the physical to the social, the external, environmental, supportive, to the... 66 00:05:54,218 --> 00:05:56,879 psychological and spiritual wiring. 67 00:05:56,879 --> 00:06:06,502 the model has been helpful for us because it really provides healthcare providers out there a way of, in some ways, of like having a therapeutic map. 68 00:06:06,502 --> 00:06:09,093 know, how do we know how to support patient dignity? 69 00:06:09,093 --> 00:06:16,905 We can give that lip service, but in the absence of knowing elements of what that constitutes, we're just kind of working in the dark. 70 00:06:16,905 --> 00:06:20,346 that helps me so much better understand 71 00:06:20,546 --> 00:06:27,431 when you came up with the idea of the platinum rule, which is doing onto patients as they were one done onto themselves. 72 00:06:27,431 --> 00:06:28,121 Well, exactly. 73 00:06:28,121 --> 00:06:36,277 I mean, if we're going to consider the importance of the health care provider gaze, then we need to really seriously consider, well, what has shaped our lens? 74 00:06:36,357 --> 00:06:41,391 And the reality is that whether we're conscious of it or not, we have a particular outlook. 75 00:06:41,391 --> 00:06:48,844 I mean, we grow up in a way in which certain things are given value and other things may be given less value, which 76 00:06:48,844 --> 00:06:54,977 then intuitively, as I first go, when we try and gauge what might a patient need, we think about the golden rule. 77 00:06:54,977 --> 00:07:00,479 If this was me, if this was somebody that I loved and cared about, what would I want done? 78 00:07:00,479 --> 00:07:11,244 Well, I mean, that's an important moral adage in religious traditions across millennia, but it does impose this external standard. 79 00:07:11,244 --> 00:07:17,186 It says, I am going to be the gauge of what I think is going to serve you best. 80 00:07:17,314 --> 00:07:24,447 Now if your lived experience happens to overlap with that person relatively well, then you might get it right or may often get it right. 81 00:07:24,447 --> 00:07:36,932 But there are many instances where we can't intuit what the patient would want, what the patient would see as being in their best interest, what values they would have informed 82 00:07:36,932 --> 00:07:37,922 the way they are cared for. 83 00:07:37,922 --> 00:07:46,540 So the platinum rule then says, well, the important perspective is the patients doing unto patients as they would want done unto themselves. 84 00:07:46,540 --> 00:07:47,841 There are many applications. 85 00:07:47,841 --> 00:07:57,319 mean, I think just in terms of the whole conversation that we have these days about EDI, equity, diversity, inclusiveness, it seems to me that you can't have that conversation in 86 00:07:57,319 --> 00:08:00,602 the absence of really acknowledging that we all have a perspective. 87 00:08:00,602 --> 00:08:10,690 What I say to learners is that at the bedside, if you're with somebody who can no longer speak for themselves, the correct question to ask is not, what would you want done for 88 00:08:10,690 --> 00:08:14,934 your father or your mother or your brother, sister, partner? 89 00:08:14,934 --> 00:08:23,880 in this instance, if they can no longer speak on their behalf, if we could bring them back into this room the way they were a week ago, or a month ago, what is it that they would 90 00:08:23,880 --> 00:08:24,501 want? 91 00:08:24,501 --> 00:08:29,784 And to me, that's a platinum standard, and that's raising the bar on person-centered care. 92 00:08:29,784 --> 00:08:31,024 That's really fascinating. 93 00:08:31,024 --> 00:08:35,348 I've had two parents who have passed away in the last eight years. 94 00:08:35,588 --> 00:08:44,064 One who end of life happened primarily at home, except for maybe the last three or four days, and another who had dementia and had to... 95 00:08:44,172 --> 00:08:45,623 move into a home. 96 00:08:45,623 --> 00:08:53,869 I thought back after all of that and reading some of your work too, what would it have meant to ask that question and to think about that? 97 00:08:53,869 --> 00:08:57,871 It does mean, and this is just a sample of two, but it happens over and over. 98 00:08:57,871 --> 00:09:00,593 It wouldn't be the same care for each person. 99 00:09:00,753 --> 00:09:01,984 Well, absolutely not. 100 00:09:01,984 --> 00:09:11,090 And this is the thing, the same is what we think about when we're referencing patients, because patient is a generic designation. 101 00:09:11,090 --> 00:09:13,624 A patient with dementia. 102 00:09:13,624 --> 00:09:15,675 cardiac patient, renal patient. 103 00:09:15,675 --> 00:09:28,994 I had a woman working in nephrology who said to me with no joy in her heart as she shared this, she said, you know, after so many years working with kidney patients, patients begin 104 00:09:28,994 --> 00:09:30,926 to look like kidneys on legs. 105 00:09:30,926 --> 00:09:43,354 And essentially what she was saying is at some point, you you see patients or you're at risk of seeing patients in this kind of generic dispassionate objective way. 106 00:09:43,378 --> 00:09:45,688 And that's not good for healthcare providers. 107 00:09:45,688 --> 00:09:55,423 I it places them at higher risk for burnout, but it's not good for patients or families because no one, and this is the irony, we train our entire lives to look after patients. 108 00:09:55,423 --> 00:09:58,665 Nobody wants us to be seen as just a patient. 109 00:09:58,665 --> 00:10:04,887 They want to be seen and understood in terms of what ails them, but not at the expense of who they are. 110 00:10:04,887 --> 00:10:10,830 So we have introduced something very simple and that we call the patient dignity question. 111 00:10:11,606 --> 00:10:16,367 should I know about you as a person in order to take the best care of you possible. 112 00:10:16,448 --> 00:10:22,549 And that's meant to be the stem of a brief conversation, five, 10, 15 minutes at most. 113 00:10:22,549 --> 00:10:34,133 We summarize the conversation into a couple of paragraphs and we bring it back to read to the patient, give them an opportunity to share any editorial changes and the litmus test, 114 00:10:34,133 --> 00:10:36,314 do you want this placed on your chart? 115 00:10:36,314 --> 00:10:37,910 Without exception. 116 00:10:37,910 --> 00:10:40,792 In every instance, patients want it placed on their chart. 117 00:10:40,792 --> 00:10:42,372 We've done this in palliative care. 118 00:10:42,372 --> 00:10:48,096 We've done this in intensive care with family members whose loved ones are either unconscious or on ventilators. 119 00:10:48,096 --> 00:10:52,354 There have now been studies at, in fact, at Memorial Sloan Kettering where I did my fellowship. 120 00:10:52,354 --> 00:10:56,560 There have been studies of thousands of patients who have participated in this. 121 00:10:56,560 --> 00:11:07,754 It is a quick and simple way of making sure that healthcare providers remind themselves that besides asking about the vitals, that personhood, 122 00:11:07,754 --> 00:11:08,935 is vital. 123 00:11:09,276 --> 00:11:11,618 And so I look at health care. 124 00:11:11,618 --> 00:11:14,881 It's in many ways very different than what you're describing. 125 00:11:14,881 --> 00:11:18,844 And it shouldn't just be at the point of palliative care, right? 126 00:11:18,844 --> 00:11:24,770 I what you're describing is really about a way of caring that puts the person at the center. 127 00:11:24,770 --> 00:11:25,110 Yes. 128 00:11:25,110 --> 00:11:27,432 And that's applicable across all of medicine. 129 00:11:27,432 --> 00:11:34,748 And you can imagine, even if your doctor had a 10-minute conversation with you about that at your first appointment, 130 00:11:35,244 --> 00:11:39,828 you would feel that this doctor cares about you as more than just a patient. 131 00:11:39,828 --> 00:11:45,923 And I'd use the word patient and you correctly said, it's not about that, it's more than that. 132 00:11:45,923 --> 00:11:47,664 But that seems like the status quo. 133 00:11:47,664 --> 00:11:51,847 So a lot would have to change from where we are now. 134 00:11:51,848 --> 00:11:54,210 Well, it's a question of mindfulness. 135 00:11:54,210 --> 00:11:59,534 It's a question of appreciating what is at risk if we don't do this. 136 00:11:59,534 --> 00:12:03,674 Some people say, well, you know, is there really enough time and is this kind of touchy feely? 137 00:12:03,674 --> 00:12:05,834 And would it make that much of a difference? 138 00:12:05,834 --> 00:12:17,194 You know, there was a study of young patients with advanced malignancies and they were looking at correlates of suicidality in this cohort of young people with advanced cancers. 139 00:12:17,394 --> 00:12:26,334 The most ardent predictor of suicidality was the solidity of the relationship between the patient and healthcare provider, even more so than cyclotropic medication. 140 00:12:26,334 --> 00:12:27,820 So if we're saying 141 00:12:27,820 --> 00:12:29,371 Well, is it that important? 142 00:12:29,371 --> 00:12:31,073 Do we really have the time to do this? 143 00:12:31,073 --> 00:12:32,554 Can we afford to do this? 144 00:12:32,554 --> 00:12:38,118 I say, well, you know, if this is a matter of life and death, can we afford not to do it? 145 00:12:38,118 --> 00:12:46,405 We also, by the way, besides the fact that this is the nice thing to do, the good thing to do, it is the humane thing to do from the perspective of patients and families. 146 00:12:46,405 --> 00:12:51,689 The stick is if you don't do this, organizations risk reputational capital. 147 00:12:51,689 --> 00:12:57,740 I mean, the reason that a health care provider or organization is likely to be litigated is not because of 148 00:12:57,740 --> 00:13:02,813 medical misadventure, it's because people just didn't feel treated right. 149 00:13:02,813 --> 00:13:05,054 They didn't feel treated well. 150 00:13:05,295 --> 00:13:15,891 And as I point out, we have data that has shown that if healthcare providers avail themselves of this information around personhood, they actually report increased job 151 00:13:15,891 --> 00:13:16,741 satisfaction. 152 00:13:16,741 --> 00:13:24,760 So this kind of marriage between the transactional and relational actually is a way of not only safeguarding reputational capital, 153 00:13:24,760 --> 00:13:28,173 but as well safeguarding the well-being of our healthcare teams. 154 00:13:28,173 --> 00:13:30,676 And are we teaching this in medical schools? 155 00:13:30,676 --> 00:13:32,197 We're certainly trying. 156 00:13:32,197 --> 00:13:43,708 I was asked this past year to give the White Coat Ceremony speech by the Dean of Medicine, and every student was gifted a copy of my book, Dignity and Care, the Human Side of 157 00:13:43,708 --> 00:13:44,449 Medicine. 158 00:13:44,449 --> 00:13:47,892 So I look at that and say, you know, we're making a start. 159 00:13:47,892 --> 00:13:50,093 The other thing that you point out, by the way, is 160 00:13:50,382 --> 00:13:50,722 Absolutely. 161 00:13:50,722 --> 00:13:52,303 This isn't just about palliative care. 162 00:13:52,303 --> 00:13:57,804 One of the messages I gave the students is that patients won't care what you know until they know that you care. 163 00:13:57,804 --> 00:14:09,627 And subsequent to that, I was also asked by the faculty of dentistry to do a half-day seminar for 100 dentists and people in the dental sciences from across the province. 164 00:14:09,827 --> 00:14:14,549 this applies to anybody in health care who has contact with patients. 165 00:14:14,549 --> 00:14:16,869 And I was at that white coat ceremony. 166 00:14:16,869 --> 00:14:20,130 I heard you address the incoming class. 167 00:14:20,236 --> 00:14:22,328 I spoke to some of the students afterwards. 168 00:14:22,328 --> 00:14:25,200 It was certainly important for them to hear it. 169 00:14:25,200 --> 00:14:32,576 And I think what I saw in them is a real openness to want to be that kind of physician. 170 00:14:32,756 --> 00:14:40,223 And now the challenge is finding a way of somehow sustaining that, of reinforcing it. 171 00:14:40,223 --> 00:14:43,445 It has to be a message that is repeated. 172 00:14:43,445 --> 00:14:49,250 And as well, it has to be something that is modeled by their mentors. 173 00:14:49,740 --> 00:14:55,332 That has a profound influence on the way people see the world and the way they practice medicine. 174 00:14:55,332 --> 00:15:00,134 You've written that an element of dignity and care is dignity therapy. 175 00:15:00,515 --> 00:15:02,175 Tell us a bit more about that. 176 00:15:02,175 --> 00:15:14,781 So when we developed the model, the empirical model of dignity in the termine leo, it gave us for the first time this kind of scientifically validated or objective map of how do you 177 00:15:14,781 --> 00:15:18,370 in fact uphold the dignity of patients. 178 00:15:18,370 --> 00:15:20,321 with life limiting and life threatening conditions. 179 00:15:20,321 --> 00:15:27,234 I up until then, it's something people can give lip service to, or you can say, well, I kind of think I'll know it when I see it. 180 00:15:27,234 --> 00:15:33,316 But the map, the model says these are the constituents of dignity conserving care. 181 00:15:33,316 --> 00:15:37,858 And one of the elements of that model was something called generativity. 182 00:15:37,858 --> 00:15:48,162 Generativity is a term that comes from a developmental psychologist, Eric Erickson, this idea that we reach a point in life where we begin to look at our influence. 183 00:15:48,332 --> 00:15:49,743 on the next generation. 184 00:15:49,743 --> 00:15:54,768 So what ripple effect will we have had as a result of having been on this earth? 185 00:15:54,768 --> 00:16:06,019 So the insight then from that was, well, if we're going to do something that would be therapeutic and we coined the term dignity therapy, could we create a psychotherapy that 186 00:16:06,019 --> 00:16:09,238 would also address generativity needs of people? 187 00:16:09,238 --> 00:16:10,659 approaching end of life. 188 00:16:10,659 --> 00:16:16,402 so dignity therapy is at this point the most studied psychological intervention in palliative care in the world. 189 00:16:16,402 --> 00:16:23,226 There are over a hundred papers in the medical literature, over a dozen systematic reviews of dignity therapy. 190 00:16:23,286 --> 00:16:29,050 We have been training therapists from around the world for the last couple decades to do this. 191 00:16:29,050 --> 00:16:36,246 They need to understand and learn how to elicit a dialogue that is really focused on legacy. 192 00:16:36,246 --> 00:16:45,049 So some elements are biographical, some have to do with wisdom that they have learned, some have to do with specific things and messages that they would want to pass along to 193 00:16:45,049 --> 00:16:46,949 the people who will soon be bereft. 194 00:16:46,949 --> 00:16:58,582 Those conversations are recorded, transcribed, and are returned to that individual as part of their legacy to share with whomever they feel would feel comforted by virtue of the 195 00:16:58,582 --> 00:17:02,093 fact that they can carry their words with them forward in time. 196 00:17:02,093 --> 00:17:04,225 And as I say, this is now being done in 197 00:17:04,225 --> 00:17:07,286 healthcare facilities and palliative care programs worldwide. 198 00:17:07,286 --> 00:17:11,448 And is that found to give people greater hope at the end of life? 199 00:17:11,448 --> 00:17:13,749 There be now multiple trials. 200 00:17:13,749 --> 00:17:25,314 so depending on the cohort that is used and the outcome measures that are also used, dignity therapy has been found to lessen depression, decrease anxiety, heightened quality 201 00:17:25,314 --> 00:17:32,157 of life, increased sense of spirituality or spiritual comfort, and enhance meaning and hope towards end of life. 202 00:17:32,157 --> 00:17:33,718 The other thing that's interesting, 203 00:17:33,718 --> 00:17:44,786 is because dignity therapy was initially meant to try and help elicit personhood in people near end of life, over the last couple of decades, it has developed legs, meaning that 204 00:17:44,786 --> 00:17:49,890 it's found its way into other areas in life where personhood is under assault. 205 00:17:49,890 --> 00:17:51,421 So for example, mental illness. 206 00:17:51,421 --> 00:17:57,396 There have now been trials of dignity therapy amongst people who are experiencing serious mental illness. 207 00:17:57,396 --> 00:18:00,992 Dementia, cognitive deterioration, a whole... 208 00:18:00,992 --> 00:18:13,391 earlier diagnosis, people who are in what I would say is a state of existential readiness in order to begin a process of kind of looking back, reviewing, pulling together the 209 00:18:13,391 --> 00:18:16,833 threads of their life and weaving it into a legacy document. 210 00:18:16,833 --> 00:18:22,357 And it seems to me the connection between all of this is affirming that the person matters. 211 00:18:22,357 --> 00:18:25,299 They matter because they are who they are. 212 00:18:25,299 --> 00:18:29,632 And as I say, in dignity therapy, it requires a certain amount of time and resources. 213 00:18:29,632 --> 00:18:30,803 And it's not a panacea. 214 00:18:30,803 --> 00:18:34,345 It's not that everybody needs dignity therapy in order to have a good death. 215 00:18:34,345 --> 00:18:41,709 But every human being who has a healthcare encounter does need some affirmation of personhood. 216 00:18:41,709 --> 00:18:45,331 None of us like to be seen just on the basis of what we have. 217 00:18:45,331 --> 00:18:47,892 We want to be seen on the basis of who we are. 218 00:18:47,892 --> 00:18:53,455 And I can tell you that the responses to the question, so what do I need to know about you as a person? 219 00:18:53,495 --> 00:18:58,058 The responses to the questions are nothing short of profound. 220 00:18:58,058 --> 00:18:58,594 And... 221 00:18:58,594 --> 00:19:03,776 they change the outlook of the healthcare provider indelibly. 222 00:19:03,776 --> 00:19:11,139 And we have data that shows that even this brief intervention enhances sense of connectedness, respect, empathy. 223 00:19:11,139 --> 00:19:21,484 So although we tend to think of those things as immovable objects, the reality is that when you open someone's eyes to who this individual is, it forever changes their 224 00:19:21,484 --> 00:19:22,014 perception. 225 00:19:22,014 --> 00:19:26,656 And again, that's why the whole issue of the healthcare provider lens is one that we have. 226 00:19:26,774 --> 00:19:28,735 important to look at and examine. 227 00:19:28,735 --> 00:19:34,018 But does that not make it harder for the healthcare provider when the person passes? 228 00:19:34,018 --> 00:19:36,239 When they lose a patient? 229 00:19:36,239 --> 00:19:38,200 Because you've made the personal connection. 230 00:19:38,200 --> 00:19:41,081 I mean, they have to go through this every time. 231 00:19:41,142 --> 00:19:42,372 Or am I missing something? 232 00:19:42,372 --> 00:19:43,923 No, no, you're not missing something at all. 233 00:19:43,923 --> 00:19:48,376 In fact, it's a very obvious question, a question that many people have asked me and asked themselves. 234 00:19:48,376 --> 00:19:51,497 I mean, how much information do I avail myself of? 235 00:19:51,497 --> 00:19:56,514 How close do I allow myself to become in the context of providing care? 236 00:19:56,514 --> 00:19:59,564 My dear colleague, Mike Carlos, used to be the head of palliative care. 237 00:19:59,564 --> 00:20:04,998 He you know, if you're going to work in the kitchen, you have to be close enough to the oven where you can feel the heat. 238 00:20:04,998 --> 00:20:09,860 But on the other hand, you don't want to be so close where you feel like you're going to be burned and singed. 239 00:20:09,880 --> 00:20:20,765 What that means is you need to know something about who they are, but you can't own their suffering because when you own their suffering, it makes you ineffectual. 240 00:20:20,765 --> 00:20:21,905 Let me give you an example. 241 00:20:21,905 --> 00:20:24,266 I was referred a woman not too long ago. 242 00:20:24,460 --> 00:20:35,137 As tragic a case as you can imagine, young woman in her early 30s, young marriage, young child, and now is dying of disseminated stage four breast cancer. 243 00:20:35,137 --> 00:20:41,902 So you think, my God, how can you not feel kind of overwhelmed and almost paralyzed by the sadness? 244 00:20:41,902 --> 00:20:46,065 If you allow yourself to go there, then you are not helpful. 245 00:20:46,065 --> 00:20:53,250 On the other hand, she came to me because she knew that she would not live long enough for her daughter to remember who she was. 246 00:20:53,390 --> 00:20:56,750 Dignity therapy in her mind was the perfect solution. 247 00:20:56,750 --> 00:20:58,390 It was extraordinary. 248 00:20:58,390 --> 00:21:08,050 We sat down and she told me about who she was, the formative experiences in her life that she would want her daughter to take forward in her own life, the important lessons and 249 00:21:08,050 --> 00:21:11,870 principles and values that she thought were meaningful to her. 250 00:21:11,870 --> 00:21:21,350 I thanked her parents, thanked her friends, thanked her husband, gave her husband permission to find a new love partner, understanding that whoever he chose would have to 251 00:21:21,350 --> 00:21:22,636 love his daughter. 252 00:21:22,636 --> 00:21:25,988 or her daughter, the way that a mother is mental of a daughter. 253 00:21:26,109 --> 00:21:29,592 I did not feel overwhelmed and impotent. 254 00:21:29,592 --> 00:21:34,706 I felt this was a profound thing that she and I were able to do together. 255 00:21:34,706 --> 00:21:43,524 So if you can negotiate that ideal empathic distance, it allows you to do things with patients that are really quite profound and meaningful without feeling overwhelmed with a 256 00:21:43,524 --> 00:21:46,286 sense of kind of therapeutic nihilism. 257 00:21:46,346 --> 00:21:51,430 I mean, I have to wipe the tear from my eye on that one because what you just described is really powerful. 258 00:21:52,012 --> 00:22:02,248 I'm thinking then, kind of next step, what happens and where does medical assistance in dying fit into this kind of work that you've been doing? 259 00:22:02,248 --> 00:22:03,489 Well, that's really interesting. 260 00:22:03,489 --> 00:22:11,693 Medical assistance in dying has sort of been a dynamic or an issue that has been a part of my career almost from the outset. 261 00:22:11,693 --> 00:22:20,246 Decades before Carter versus Canada, we published one of the largest study on desire for death in the terminal ill that had ever entered into the literature. 262 00:22:20,246 --> 00:22:30,642 I think data out of the Benelux countries showing the association between a wish to die and lost sense of dignity was very formative in our work. 263 00:22:30,642 --> 00:22:38,716 And in their studies, they went back to the death record, they identified the physician of record and then said, well, why do you think your patient sought this? 264 00:22:38,716 --> 00:22:44,352 And indeed it was because they reported their sense was a lost sense of dignity, which no one had ever studied. 265 00:22:44,352 --> 00:22:49,358 I have a doctoral student now who's doing a study on medical assistance in dying, primarily to try and... 266 00:22:49,358 --> 00:22:55,538 find out, do a deep dive with people to find out what motivates you to make this decision. 267 00:22:55,538 --> 00:22:57,158 I how have you arrived at this place? 268 00:22:57,158 --> 00:22:59,498 You know, we're not doing it with any political acts to grind it. 269 00:22:59,498 --> 00:23:03,478 It's just very much interested in how do you arrive at this decision? 270 00:23:03,878 --> 00:23:12,178 And there's one interview that I remember we did recently, and I was with a gentleman who, this man has been, he's got a bad disease and he's being approved for made. 271 00:23:12,178 --> 00:23:17,078 And he says, I am not going to die the way my grandmother died. 272 00:23:17,078 --> 00:23:19,246 Because he had this memory of her having died at 273 00:23:19,246 --> 00:23:23,589 terrible death and it was bad and he's just not going to go that way. 274 00:23:23,630 --> 00:23:26,852 And so I said, well, tell me, how long ago did your grandmother die? 275 00:23:26,852 --> 00:23:29,394 He said, well, 30 years ago. 276 00:23:29,546 --> 00:23:30,435 30 years. 277 00:23:30,435 --> 00:23:37,241 For three decades, he has carried around this memory of what did or did not happen at the bedside of his grandmother. 278 00:23:37,241 --> 00:23:39,263 So we need to get dying right. 279 00:23:39,263 --> 00:23:41,104 I mean, it only happens once for each person. 280 00:23:41,104 --> 00:23:42,325 We need to get it right. 281 00:23:42,325 --> 00:23:48,238 But as well, it has ripple effects that are felt by everyone who will survive that death. 282 00:23:48,238 --> 00:23:53,178 and even shape the way that they too will then approach their own death. 283 00:23:53,378 --> 00:24:05,038 Assistance in Dying, it's informed my work, but it is, in my estimation, I mean, it is one very narrow approach to trying to address the issue of suffering. 284 00:24:05,038 --> 00:24:08,658 I'm interested in the much broader spectrum of suffering. 285 00:24:08,658 --> 00:24:11,838 You know, what is it, how can we understand suffering? 286 00:24:11,838 --> 00:24:13,814 And much of our work in some ways, 287 00:24:13,814 --> 00:24:24,894 is consistent with findings of earlier American investigators, people like Eric Kassell, who reported that suffering was something that happened when people felt that personhood 288 00:24:24,894 --> 00:24:27,347 was under assault or threat of disintegration. 289 00:24:27,347 --> 00:24:39,830 So that is the way in which issues around medical assistance in dying have continued to kind of inform and be a part of my work, but not certainly being the focus of my work. 290 00:24:39,830 --> 00:24:48,834 I like the way you said that, it's a small part of that and it's focused on dignity and dignity has been a big part of the conversation we've been having and you're working on a 291 00:24:48,834 --> 00:24:49,954 different stream of that. 292 00:24:49,954 --> 00:25:00,269 Well, and unfortunately the hasten death organizations have kind of hijacked the term dignity and I hope in some ways that some of the work that I'm doing and others has at 293 00:25:00,269 --> 00:25:07,458 least tried to reclaim that term to say that, I mean, the way to preserve dignity is not exclusively. 294 00:25:07,458 --> 00:25:19,228 by having access to a mechanism that can result in your death and choose the timing and circumstances of your death, that dignity is a much broader, a much more complex issue 295 00:25:19,228 --> 00:25:19,728 than that. 296 00:25:19,728 --> 00:25:30,857 And we went into this thinking, if we can understand why somebody doesn't want to be alive, if we can get a better handle on that, it ought to give us more insights, a wider 297 00:25:30,857 --> 00:25:33,700 breadth of insight about how to deliver better care. 298 00:25:33,700 --> 00:25:36,630 And I think, you over the decades, that's been borne out. 299 00:25:36,630 --> 00:25:39,132 And I hope we've made some gains, though, and we've advanced. 300 00:25:39,132 --> 00:25:41,383 I I certainly saw it in the care of my mother. 301 00:25:41,383 --> 00:25:51,821 And just to give one example, at the care home she was at here in Winnipeg, after she passed, they used to take the patients out the back, and now they decided to take them out 302 00:25:51,821 --> 00:25:52,741 the front. 303 00:25:52,741 --> 00:25:59,186 And all the staff and other people in the home lined the hall as they moved the casket down the hall. 304 00:25:59,186 --> 00:26:04,690 And you just felt that she was seen as a person who lived in this home. 305 00:26:04,908 --> 00:26:07,700 and it made such a difference at that last moment. 306 00:26:07,700 --> 00:26:09,341 Now I'm the one who has to wipe the tears. 307 00:26:09,341 --> 00:26:17,917 It is a wonderful and profound story and it affirms everything we said because it says that while she was alive, she mattered. 308 00:26:17,917 --> 00:26:19,548 In her moment of death, she mattered. 309 00:26:19,548 --> 00:26:27,894 And immediately after her death, as they removed her from the care home, she mattered and her connections with people mattered. 310 00:26:27,894 --> 00:26:31,576 And to have taken her out the back door would have ignored all of that. 311 00:26:31,576 --> 00:26:34,358 So it is a profound example. 312 00:26:34,818 --> 00:26:36,319 poignant and meaningful. 313 00:26:36,319 --> 00:26:46,027 And one of the very famous adages of Dame Saunders, the founder of the modern hospice movement, that has really become kind of a philosophical primary tenet of palliative care 314 00:26:46,027 --> 00:26:50,211 is you matter because you are you, and you matter to the end of your life. 315 00:26:50,211 --> 00:26:59,820 So on that last question, you've been studying this your whole career, and I wonder how it's impacted you and how your view of death and suffering. 316 00:26:59,820 --> 00:27:01,151 have changed through your career. 317 00:27:01,151 --> 00:27:03,472 So you're wondering if I've gotten good at dying. 318 00:27:05,113 --> 00:27:07,154 I haven't died yet, not even once. 319 00:27:07,570 --> 00:27:08,685 You know, it's interesting. 320 00:27:08,685 --> 00:27:15,730 mean, has the work changed me or have I chosen the work because of the way kind of I've been shaped in my own life? 321 00:27:15,730 --> 00:27:17,540 I mean, my mother died a couple of years ago. 322 00:27:17,540 --> 00:27:20,321 Her last year of life was not easy. 323 00:27:20,581 --> 00:27:29,216 And the variability in care was profound from the extraordinary to the outright horrific. 324 00:27:29,216 --> 00:27:41,069 Outright horrific where I was sitting down having to go toe to toe with, I remember one nurse in particular who said, do you understand that what you said to my mother this 325 00:27:41,069 --> 00:27:44,410 morning made her wish that she were dead? 326 00:27:44,570 --> 00:27:49,351 And she said, do you think I should apologize? 327 00:27:49,412 --> 00:27:51,772 I said, I think that would be a good start. 328 00:27:51,772 --> 00:27:54,613 I was seething. 329 00:27:55,093 --> 00:27:58,434 it's not like doing this work, you know, kind of makes you immune from the fact that 330 00:27:58,434 --> 00:28:00,415 This stuff happens and it's unacceptable. 331 00:28:00,415 --> 00:28:02,146 We need to try and change it. 332 00:28:02,146 --> 00:28:04,237 So I'm doing my little bit to try and change it. 333 00:28:04,237 --> 00:28:15,641 I see opportunities to present and to engage in these kind of conversations as a time limited opportunity to make these things well known until I no longer have a voice to be 334 00:28:15,641 --> 00:28:16,882 able to do so. 335 00:28:16,882 --> 00:28:18,332 Harvey, thank you so much for this. 336 00:28:18,332 --> 00:28:20,343 It's fascinating conversation. 337 00:28:20,343 --> 00:28:23,285 And as we say, mean, everyone's going to deal with this. 338 00:28:23,285 --> 00:28:26,828 And I hope our listeners really have learned about. 339 00:28:26,828 --> 00:28:34,411 some of the options that are available and how to approach it and how to think about it, either for themselves or loved ones that are coming to end of life. 340 00:28:34,411 --> 00:28:35,593 Thank you so much. 341 00:28:35,593 --> 00:28:36,574 My pleasure. 342 00:28:39,030 --> 00:28:42,113 I hope you enjoyed this episode of What's the Big Idea? 343 00:28:42,113 --> 00:28:46,458 Please consider sharing this important conversation with your friends and family. 344 00:28:46,458 --> 00:28:52,423 Join me next time for another great conversation, and until then, keep thinking big.