26. The One Question That Humanizes Patient Care with Dr. Harvey Chochinov

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Welcome to Capturing Essence for Care, where we discuss the importance of incorporating personal life stories into healthcare and share ideas to help you on your journey.
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I'm your host, Lisa Joworski.
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Well, welcome to Capturing Essence for Care, everyone.
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Today I feel really quite privileged to have the opportunity to chat with Dr.
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Harvey Max Chochinov.
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I was encouraged to reach out to Dr.
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Chochinov through Dr.
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Sammy Winemaker, who was on a previous episode.
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So she saw some similarities between Dr.
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Chochinov's work and what my mission really is.
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And I think you will feel the same way when you hear more about his work.
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Dr.
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Harvey Max Chochinov is a distinguished professor of psychiatry at the University of Manitoba and a senior scientist at the Cancer Care Manitoba Research Institute.
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His pioneering research provides an empirical foundation for understanding palliative and end-of-life care.
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With over 350 publications exploring topics from depression and spirituality to vulnerability and existential distress, his work has been cited 30,000 times.
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Dr.
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Chochinov developed Dignity Therapy, a therapeutic approach that honors what matters most to patients, and co-founded the Canadian Virtual Hospice.
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His latest book is In Search of Dignity: a Lifetime of Reflections through Oxford University Press.
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He is an officer of the Order of Canada and was inducted into the Canadian Medical Hall of Fame in 2020.
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Dr.
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Chochinov, thank you, thank you, thank you for agreeing to do this with me and carving out the time to have this conversation.
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My pleasure.
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So I just wanted to start there on letting you know that I think that's such a deep and important question, and that it does very much connect and align with my beliefs on doing the work I do, focusing on like what do I need to know about you to, you know, for us to really know what matters and to give you the best full life possible, whether it's for cognitive or emotional or physical reasons or limitations, like what can we do to make sure you have the best quality of care?
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So I'd love for you to just expand on that and how you came to that conclusion and came up with that question in the first place.
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Sure.
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Well, first of all, it's a it's a pleasure to be here and have the opportunity to meet with you and speak with you and to you know try and get these uh kind of uh learnings, hopefully, into the hands of people where it might make a difference.
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Um as you said in your introduction, I mean, I've been doing uh research for several decades now on uh issues related to uh patient experience, uh end-of-life care, palliative care, uh, including a large program of research on the area of dignity, which I'm sure we're going to be uh tapping into.
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But the question that you begin with uh is one that we have coined the patient dignity question.
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What do I need to know about you as a person?
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And that's an important caveat.
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It's what do I need to know about you as a person in order to take the best care of you possible?
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It seems like an odd thing to try and study, but we first of all decided that we we thought it was important because it seems relatively brief and doable, um, and something that most people in a healthcare context could could undertake.
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So getting back to so how did we go about studying uh such a kind of a nebulous thing as the the patient dignity question or the PDQ as we call it.
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Well, we usually you know go to the patient, and and the conversation, which I mean is meant to be kind of interactive and organic, essentially boils down to this.
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We know a whole lot about your medical circumstances, we know all the things that are in your chart.
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What we know very little about, on the other hand, is you know, who are you?
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Who are you as a person?
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And we then use that question: what do we need, what should we know about you, or what would you like us to know about you as a person in order to give you the best care possible?
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That is meant to be the basis of the foundation for a brief conversation.
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And brief, it can be as little as five minutes, it can be as much as 10 to 15 minutes, but it's a conversation that's focused on how would you like to be seen?
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For for anybody walking in this room, I mean, very few people.
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In fact, no one really wants to be seen as the embodiment of a medical condition.
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And we know that human suffering really takes place when people feel that their personhood is under assault.
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So we ask the patient, how is it that you would like to be seen as a person?
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What would you want folks to know about who you are as a human being, in other words?
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Well, they kind of get you.
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And people usually um disclose things that have to do with either values, uh relationships, sometimes worries or concerns, what metaphorically has been called kind of, you know, the essence or the thread.
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You know, what is your thread?
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Once that conversation is completed, we then go, um, and this is how the how we've done the research, we then go and we summarize that into two, three paragraphs at most.
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We come back to the bedside and we uh do three things.
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We we we read it to the patient.
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We then find out, does it need to be edited in any way?
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I mean, have we captured the essence of our conversation?
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Right.
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And then the litmus test, do we have your consent to place this on your medical charge?
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And I can tell you, in all the years of doing this, and certainly in all the people that we've studied, I've never heard of an instance where someone said, you know what?
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I really don't want people to know who I am.
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Right.
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You know, what you've just said about, you know, the essence of who I am as a human being, besides whatever thing is going wonky in my body, I don't want people to know any of that.
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It's it's never happened.
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So in our research, we have found that everybody wants it on their chart.
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They feel that it offers information that changes how they'll be cared for, and specifically, even the tone of care.
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And then we've also uh examined the reactions of healthcare providers who read these things.
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And what we find is that in over 90% of instances, they find something they didn't previously know.
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And it also seems to heighten things like compassion, respect, and connectedness.
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So we have studied the PDQ in primarily in palliative care.
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It's now been studied in several thousand patients uh when you look at the uh the literature, largely in oncology.
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And just last month, we actually published a paper in the Journal of Critical Care, in which we had a PDQ study that took place during COVID, and we were in an intensive care unit or several intensive care units, and we engaged families kind of as proxy informants.
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So we'd ask the family whose loved one was now unconscious or on a ventilator, same conversation, because it was COVID, it was over the phone.
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So we'd say, you know, um, we know a lot about what's going on physically, you know, with your loved one, but they can't speak on their own behalf.
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And we know really nothing of who they are.
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And family members were just gobsmacked.
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They, I mean, the the level of endorsement and engagement was profound.
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In fact, we had a hundred percent participation rate.
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Every single family that we approached um agreed to be part of this study.
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So the results of that are just uh published last month in the Journal of Critical Care.
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And again, families end up saying this is a critical part of what should be done to raise the bar in person-centered care.
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And similarly, healthcare providers who read these things report a heightened sense of connectedness,
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empathy, and response.
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Wow, there are a lot of things in there I want to pinpoint or focus on.
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Thank you so much for sharing all of that.
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I first of all, I'm curious to know, just from a logistical point of view, has there how did you go about, how did you go about making sure or besides the consent piece, because it sounds like obviously people are going to be on board, but logistically, how hard was it to get that information that you're sharing, that few paragraphs, onto the health record?
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Like if it's electronic, the hospital records or whatever it might be.
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Can you explain more about like is it just a document?
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How does how do people know where to find it?
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I think is more of my question.
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Well, um, the the answer depended on the place in which it was done.
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And again, um there have now been you know a variety of studies done on the PDQ.
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In fact, there are even systematic reviews now of uh PDQ studies, and and it's been translated into, I don't know, about a dozen different languages.
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So it's something that is available not only for purposes of research, but for uh clinical implementation.
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And certainly in the palliative care world, um, more so than and I think uh and in oncology, um it's beginning to become uh quite routine.
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I mean, our our palliative care clinicians uh tell me that they routinely use this as part of their way of evaluating patients and and as part of connecting with people.
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So the first study that we did on this was in a palliative care unit.
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Um at the time, um, this was not an electronic chart, it was it was a paper chart.
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So we could uh easily place it in a paper chart.
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The other thing that we found worked is um with the patient's consent and with the family members' consent, it can also be placed at the bedside.
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So be put in a place that was available and accessible.
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We're now, I mean, with the advent of electronic charts, we're now doing a study of the patient dignity question in outpatient oncology clinics.
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And there will be a special flag within the electronic charts so that when people want to find out about these issues related to personhood, they'll be able to go to that information.
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As far as the difficulty of eliciting the information, I can say that for the most part, it wasn't um an arduous task.
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And again, it's meant to be something that is practical.
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Um I remember I was on a uh I gave grand rounds last year to all of the Mayo clinics in the United States.
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And so while we were on a conference call, they were talking about how they could begin to implement some of this work.
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And uh one of the neurosurgeons butted in and said, Look, I'm a very busy physician, you know, like I don't have time for a whole lot of extra stuff.
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So is there something I can do?
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And I said, Well, do you think you can ask your patients, you know, what you should know about them as people so that you can take them.
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And he said, Yeah, I think I can do that.
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Yeah.
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The the biggest challenge is patients don't necessarily immediately recognize what it is you're going after.
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Right.
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They it's sort of a question that for some of them seems to come out of left field because it is not, you know, biomedical.
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So, you know, so you'll sometimes have people who I look and say, you know, I'm not quite sure what you mean.
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Or they'll begin to respond to it the way they think you want them to respond, which is, for example, well, you know, I'm really worried when I'm discharged from hospital about getting up the stairs because my gate has been affected by this, that, the other.
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And I'll say, well, those sound like really important issues, and I will pass those along to, you know, your doctor or your OT.
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But actually, I was wanting to have a different kind of conversation.
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This is not about your medical circumstances.
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Uh I want to know who you are.
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You know, as a human being, as a person, who are you?
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How is it you want to be seen?
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And in fact, you know, the difficulty and the confusion in applying the PDQ is something that I responded to in a recent article that I published in the uh the Journal of Palliative Medicine called um revisiting the patient dignity question.
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And basically, it tries to address how can we make this practical?
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Because I've had some people say, well, look at I've tried the PDQ, it just doesn't work.
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You know, it just hasn't worked for me.
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And I think right.
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How did you ask those questions?
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How did this start, right?
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For well, for some people, I mean, people, you know, tend to maybe be um uh a little bit kind of reductionistic and think, okay, I just have to read this question.
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What should I know about you as a person to take the best care of you that I can?
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And the patient looks at them and says, huh?
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Or I'm not sure I get it.
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And that constitutes, you know, well, it doesn't work.
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And I say, no, no, the question is meant to be the root, the foundation of a conversation.
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Once people get it, once people say, Oh, so you you want to know something about me, you're not asking about, you know, the lump that I have in my breast, you're not asking about the blood abnormality that brought me here in the first place, then they can speak.
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The other thing, by the way, I should say about this, and this is true of most of my work, and that is that even though this was done in, I mean, we I've been working in palliative care for 30 plus years.
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What you end up learning, and this sort of somewhat of an epiphany, what you end up learning are the things that people tell you at the end of life resonates across the entirety of life.
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In other words, being near the end of life does not create a monopoly on the importance of dignity, kindness, compassion, affirmation.
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Um, it is, of course, for some people very much heightened at that time.
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But being able to be attentive to personhood, you know, in applying uh good, holistic, person-centered care is relevant across the entire life cycle.
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And so the the these so these kinds of approaches are now, you know, you mentioned the number of citations.
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Those citations now are across a wide spectrum of medicine.
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I've seen
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this work quoted in rehab medicine, in sports medicine, um, in um uh COPD, in um there was uh an article on the patient dignity question in patients with tuberculosis.
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So it's really across a very broad spectrum.
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It's it it may come from the world of palliative care, but it's meant to resonate across the entirety of care.
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Yeah, and that makes complete sense to me.
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I I had an experience like 20, 25 years ago, and so I mostly work with people living with dementia.
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And so I had the opportunity to work with, you know, we got to see family members when they'd come and pick up their loved ones.
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And so this daughter, and I've mentioned this before in other podcast episodes, the daughter had come in just casually because we were finishing dinner and she was picking up her mom and said, Um, I have this video I found of my mom on my camera.
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And it's the old normal cameras, like on a smartphone.
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And so she showed us just while we were sitting having dinner and finishing, because we had a nice relationship.
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So she showed us this video of her mom.
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And her mom, she had a diagnosis of frontal temporal dementia, but this was years earlier.
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Maybe had some early signs and symptoms.
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But so it was the actual client that I had been working with who's, you know, who's talking to her daughter who was holding the camera and was talking about her walking her granddaughter to school one day, but she was laughing at herself and talking about how she realized once they got to school, she looked down and still had her slippers on.
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And so had this, you know, she had this Irish accent and this beautiful red hair that, you know, those pieces I couldn't pick up as well in the later stages of dementia.
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So it opened my eyes and gave me a whole new, not a new results, of course I've I always respected her, but I've also always thought that I was fairly compassionate, fairly empathetic in my work with her.
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But like you're saying, it gave me a whole other level of understanding.
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And it wasn't, it wasn't so much what she said, it was her ability to laugh at herself and have that sense of humor and just the human piece, like it was humanizing her in this healthcare setting that really touched my heart.
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And so I found that I was much more successful in engaging her in activities and having a different level of patience because she would approach me repeatedly, you know, and not be able to sit down.
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And, you know, often people would go, come on over here and sit down and redirect a person.
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But it was just different.
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She was able to do an activity and I heard her counting and being able to do things that she wasn't able to do with me.
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But that changed that shifted my perception and made me realize she's capable of so much more if I just see her differently.
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So anyway, it was one of those moments, right?
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Where just knowing that little bit of of who she is and was as a person um helped me do a better job and see her differently.
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So I just I just am agreeing with you with all that you said.
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And when you ask those questions, um you you see things and hear things that you can't unsee or unhear.
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Yes, yeah.
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And as you said, it just it just it shifts things.
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There's this there's this profound and fundamental change.
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Um, and the kinds of responses that we've gotten, I mean, from you know, doing this work um are really profound, you know, people who will share things that and and the other thing is that everybody has something that is uniquely them.
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And so it's not as if, well, this only applies to people who have had a particular kind of life or a particular kind of an extraordinary path.
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Yes.
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Every path is extraordinary because it is unique.
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And so everything from, you know, one physician, one one patient who told us he was a, he told us that he was a uh a physician previously in a hospital, ran a department of medicine and wanted a sign on his bedpost that read Pip, PIP, previously important person.
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Um another woman who shared with us that she was a survivor of the residential schools.
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Uh, another woman uh who said we found out uh this was actually a family member was speaking on her behalf, who said that um her sister had likely been murdered, and how this woman, her mother, continued to search for her, but as well had become kind of a very much of a spiritual guide for people in her community.
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Uh, another woman who was dying in hospital who said uh the reason that I'm feeling you know morose and sad has nothing to do with the fact that I'm dying.
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But the fact that my young son is dying of pancreatic cancer, and my daughter-in-law and three grandchildren are soon to be without him, that's what causes me anguish.
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Again, every person has these unique stories.
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And what I'm always struck by is to think that you could try and offer this individual person-centered care in the absence of knowing that.
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And and I'll I come back to say that you cannot do person-centered care in the absence of knowing about the person.
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I mean, it's just not possible.
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The other thing I'll pick up uh what you said is uh the issue of perception.
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And uh you put your finger on it.
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The the information, besides whatever effect it might have on families who are able to share this and feel better about you knowing this about their loved one.
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Um Which then, by the way, elevates them from the status of patient to person.
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Yeah.
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Patient is the generic designation, and that's why they're in the renal ward or the cardiac ward or wherever ward they're in.
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Tell them a person, it takes them out of the realm of the generic.
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They're now, this is now the personal.
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But you change the perception of the person who is the recipient of this information.
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And for me, this was, you know, getting back to our earlier work, our the beginnings of this work on dignity, we were looking at the issue of dignity, you know, going back again several decades.
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And the work began because we had discovered that according to Dutch physicians who had helped their patients die by as a result of assisted death, loss of dignity factored in more so than anything else as to why they acquiesced to their patient request.
00:22:57.200 --> 00:22:59.680
And so we began doing some work on this.
00:22:59.680 --> 00:23:08.319
Anyways, moving forward and cutting to the chase, one of the really profound things that we discovered, and this was all uh quantitative.
00:23:08.319 --> 00:23:30.319
I mean, there was, we also did some qualitative work, but when we looked at measures and we had tried to develop some quantitative and validated measures of uh areas of distress, including a dignity measure that we modeled on something called the uh the SADS interview, schedule of affective disorders and schizophrenia.
00:23:30.319 --> 00:23:45.599
What we found is that when you do the modeling of this data, the thing that comes out as the most ardent predictor of sense of dignity is appearance, how people perceive themselves to be seen.
00:23:45.599 --> 00:24:02.319
So the epiphany, and again, you talked about perception, the epiphany, and I wrote this not only in the empirical article that we published in The Lancet, but in another article called in the Journal of Clinical Oncology called Dignity in the Eye of the Beholder.
00:24:02.319 --> 00:24:16.720
And that is that metaphorically, even though this is empirically based, metaphorically, patients are looking for a reflection in the eye of the healthcare provider who will be affirming of their sense of dignity, of personhood.
00:24:16.720 --> 00:24:30.240
So if they in that reflection just see a problem checklist, or they see nothing at all, then what's happened is patienthood has eclipsed personhood.
00:24:30.240 --> 00:24:33.599
And that is the essence of human suffering and healthy care.
00:24:33.920 --> 00:24:37.680
Yes, not being seen, not being heard, not being valued, right?
00:24:37.680 --> 00:24:38.559
You got it.
00:24:38.559 --> 00:24:39.519
Boy.
00:24:39.519 --> 00:24:44.480
So how there's two questions that come to mind.
00:24:44.480 --> 00:24:49.680
The one you've you are touching on already, but how realistic?
00:24:49.680 --> 00:25:02.000
I'm thinking of like, is this the question slash questions, um, is this something you think even family doctors can do?
00:25:02.000 --> 00:25:04.160
Is it something that's already being done?
00:25:04.160 --> 00:25:08.400
Like, are there certain I don't know, like how realistic is this?
00:25:08.400 --> 00:25:18.000
And I I mean that just to be very curious and authentic and you know, wondering how how realistic it is and how much people are actually doing this.
00:25:18.400 --> 00:25:27.039
So when when you refer to this, I mean, when when I think of this, I think of this as being an acknowledgement of personhood.
00:25:27.039 --> 00:25:30.720
I I wrote an article years ago called uh The Secret Is Out.
00:25:30.720 --> 00:25:33.759
Patients are people with feelings that matter.
00:25:33.759 --> 00:25:34.880
Okay.
00:25:34.880 --> 00:25:42.160
So I would flip the question on its head and I would say, well, how realistic is it that we don't do this?
00:25:42.160 --> 00:25:57.599
How tenable is it that we increasingly move the culture of healthcare towards strictly the transactional, that the relational just kind of falls off the way, falls to the wayside.
00:25:57.599 --> 00:26:01.680
If we don't do this, then what are the consequences?
00:26:01.680 --> 00:26:04.400
Well, we and and we know the consequences.
00:26:04.400 --> 00:26:16.240
Uh, you know, I mean, there's lots of data that shows that in the absence of this, of including the relational with the transactional, patients are less trusting.
00:26:16.240 --> 00:26:31.359
They're not gonna tell you what their goals of care are in a clear way, there's gonna be more discordance in in goals of care, there's gonna be unnecessary uh treatments because people are avoiding important conversations.
00:26:31.359 --> 00:26:42.240
Um, we also know that if you don't do this, um clinicians are more likely to experience job dissatisfaction.
00:26:42.240 --> 00:26:50.559
We have data that shows that physicians who avail themselves of information around personhood actually report heightened job satisfaction.
00:26:50.559 --> 00:27:00.640
So if you want to mitigate burnout, you need to have a healthcare system that allows for the transactional hand in hand with the relational.
00:27:00.640 --> 00:27:12.720
And then finally, and this is sort of the uh, I mean, there's the carrot in the stick, you know, the carrot is we should be doing this, people want it, patients want it, families want it, it's the right thing to do.
00:27:12.720 --> 00:27:19.519
Um, the stick is look, if you don't do this, you sacrifice reputational capital.
00:27:19.519 --> 00:27:31.599
The greatest likelihood of a clinician or a healthcare system being sued is not because of medical misadventure, it is because of communication issues.
00:27:31.599 --> 00:27:45.440
I mean, there's even there have even been studies that show a direct correlation between scores on communication skills in royal college examinations and future litigation.
00:27:45.440 --> 00:27:47.759
So the date is there.
00:27:47.759 --> 00:27:58.000
So rather than saying, well, how tenable is it for us to do this, how tenable is it for us not to do this because of all of the fallout that I've outlined.
00:27:58.319 --> 00:27:59.680
Yeah, absolutely.
00:27:59.680 --> 00:28:07.599
I've heard of a study where, you know, the lawsuits against doctors, it was all all around how good their bedside manner was.
00:28:07.599 --> 00:28:24.640
And if you had a good relationship with an individual and took the time and listened, even if they did something wrong, the patients were less likely to sue that doctor versus another situation where they just didn't care, didn't listen, but did a fine job, right?
00:28:24.640 --> 00:28:26.720
With whatever surgery it might be.
00:28:26.720 --> 00:28:29.759
I might be speaking out of turn, but that's the gist of it.
00:28:30.240 --> 00:28:33.279
My my former colleague um Mike Harlows Dr.
00:28:33.279 --> 00:28:51.039
Mike Harlows, who's was the uh our our former uh head of uh of of palliative medicine here in uh in Winnipeg, uh just an extraordinary clinician, uh, wise uh and capable, said patients will forgive you almost anything but lack of kindness.
00:28:51.440 --> 00:28:52.000
Yeah.
00:28:52.000 --> 00:28:52.480
Yeah.
00:28:52.480 --> 00:28:53.440
So true.
00:28:53.440 --> 00:28:54.400
So true.
00:28:54.400 --> 00:29:07.359
So this podcast, I think, is listened to by not only healthcare professionals, but also storytellers that could be artists, photographers, videographers, life story writers, and so on.
00:29:07.359 --> 00:29:14.799
Are there any tips and tools that you could provide that would help storytellers who want to help individuals?
00:29:14.799 --> 00:29:23.599
Because I think that capturing the essence for care is really important and what you're sharing is also a priority in healthcare.
00:29:23.599 --> 00:29:34.799
So I could see how, for instance, for example, I really believe that if you have a little video like the one I was sharing about earlier, if you were able to say, say I was in an appointment with you, Dr.
00:29:34.799 --> 00:29:39.759
Trochinoff, and you said, you know, tell me a little bit about you, like about who you are.
00:29:39.759 --> 00:29:46.240
I'd love for somebody to say, Do you have any pictures on your phone or a little video you want to show me to start off?
00:29:46.240 --> 00:29:54.960
But is there something else or tips or questions that would be helpful for those storytellers to support the people that they're working with?
00:29:55.519 --> 00:29:56.079
Sure.
00:29:56.079 --> 00:30:05.920
Well, um, so backing up then um in terms of the trajectory of the work, because we we started off with the patient dignity question.
00:30:05.920 --> 00:30:26.960
So the patient dignity question came out of the realization that some work we had done earlier on something we call dignity therapy may not be applicable uh in all circumstances, and not all patients would want or need what we had coined dignity therapy.
00:30:26.960 --> 00:30:29.599
So, what is dignity therapy?
00:30:29.599 --> 00:30:39.839
Um, dignity therapy is based on, again, some research that we had done around trying to understand how patients understand this construct of dignity.
00:30:39.839 --> 00:30:52.240
And, you know, uh, even though these Dutch physicians had told us in their studies that, you know, the reason that people are dying and that we are helping people to have a haste in death is because of lost sense of dignity.
00:30:52.240 --> 00:31:04.000
What no one had done was to go to the bedside of people who were approaching death or facing life-limiting or life-threatening conditions and saying, well, what does dignity mean?
00:31:04.000 --> 00:31:07.359
You know, um, how do you how do you know if it's working?
00:31:07.359 --> 00:31:09.039
How do you know if it isn't working?
00:31:09.039 --> 00:31:23.519
And so we did the first studies on dignity in the terminal ill and ended up publishing uh, you know, various papers and a model of dignity in the terminalel that really kind of helped us break it down.
00:31:23.519 --> 00:31:28.079
I mean, it's easy to say we ascribe to dignity conserving care.
00:31:28.079 --> 00:31:31.920
You know, we believe in upholding the dignity of our patients.
00:31:31.920 --> 00:31:36.799
The problem is, if you dig beneath the surface and say, well, how do you do that?
00:31:36.799 --> 00:31:40.000
Say, well, you know, I trust my gut.
00:31:40.000 --> 00:31:42.880
You know, say, well, not everybody has a talented gut.
00:31:42.880 --> 00:31:45.359
What does it really mean?
00:31:45.359 --> 00:31:56.960
And so when we did the work, we discovered, oh, there are various different constituents, various different sources of information that are important to understand this notion of dignity.
00:31:56.960 --> 00:32:01.839
And it was on the basis of that that we developed something called dignity therapy.
00:32:01.839 --> 00:32:14.960
So, dignity therapy is a brief individualized psychological intervention that is designed to help patients elicit their story.
00:32:14.960 --> 00:32:18.720
The underpinnings of it are based on the notion of generativity.
00:32:18.720 --> 00:32:33.440
So, in our model, patients told us that for some, and again, there are a variety of things that can influence dignity, but for some, this idea that, you know, not having left a mark or made a difference.
00:32:33.440 --> 00:32:52.160
Um, and generativity, which is a term from the developmental psychologist Eric Erickson, is this idea of am I doing things in my life that are making a contribution, making a change for this world, for the people in my life, for the next generation?
00:32:52.160 --> 00:32:58.319
Thus, generativity versus what uh Erickson called stagnation.
00:32:58.319 --> 00:33:00.799
And, you know, clinically we see this.
00:33:00.799 --> 00:33:05.599
I mean, are people in a place where they feel that life continues to be meaningful?
00:33:05.599 --> 00:33:18.240
You know, people feel that there is a purpose in being as opposed to this kind of state of stagnation where, you know, there's little that keeps the allure of life feeling kind of fresh.
00:33:18.240 --> 00:33:36.559
So dignity therapy, then, with uh the training that we uh provide uh therapists, allows people to elicit the story and to give voice to the things that people would want said, would want known, would want preserved.
00:33:36.559 --> 00:33:42.240
There's, I mean, I've I've written a book about dignity therapy called Dignity Therapy Final Words for Final Days.
00:33:42.240 --> 00:33:46.079
If you just go online, there's lots and lots on the internet.
00:33:46.079 --> 00:34:02.319
Uh, also, there's a website, dignityandcare.ca, where any of those storytellers that you mentioned can go to and they can read up about dignity therapy, including the framework that we use to help people elicit the story.
00:34:02.319 --> 00:34:15.360
And the story is only in part biographical, because for some the biography is important, but it's it's much more than just the uh the biographical detail.
00:34:15.360 --> 00:34:17.840
It's, you know, what are the lessons learned?
00:34:17.840 --> 00:34:22.400
What are the wishes or hopes that they would want to pass along to loved ones?
00:34:22.400 --> 00:34:26.639
What guidance do they want to give for people they're about to leave behind?
00:34:26.639 --> 00:34:43.280
And again, all of this comes from the model, which says that for people, part of feeling uh vital, feeling like personhood is intact, is the ability to continue to provide care for the people that are close to us in our lives.
00:34:43.280 --> 00:34:55.360
And so dignity therapy allows people to do something that is, you know, very meaningful, very practical, that is then is recorded.
00:34:55.360 --> 00:35:13.679
So the conversation is recorded, it's transcribed, um, it goes through an editing process so that it doesn't read like a meandering dialogue, but more like a pristine narrative, which is then given to the patient for them to share with whomever they like.
00:35:13.679 --> 00:35:29.039
And again, uh this is sort of a very quick synopsis of what you know is usually part of a uh, you know, one time it was a three-day training workshop that we did to bring therapists up to speed so that they could uh deliver dignity therapy.
00:35:29.039 --> 00:35:31.360
The other, I mean, there's much to be said.
00:35:31.360 --> 00:35:34.800
I mean, dignity therapy started as an end-of-life intervention.
00:35:34.800 --> 00:35:36.960
That was 20 years ago.
00:35:36.960 --> 00:35:49.519
But if you think about it, it's it started as an end-of-life intervention because approaching the end was something that was assaultive, uh personhood.
00:35:49.519 --> 00:36:03.360
What's happened over the years, though, is other people around the world have seen have seen it and said, well, you know, dying doesn't have a monopoly on things in life that take away or fracture sense of personhood.
00:36:03.360 --> 00:36:08.400
And so people have applied dignity therapy to other situations.
00:36:08.400 --> 00:36:11.599
Uh, you mentioned you work uh in uh dementia care.
00:36:11.599 --> 00:36:17.360
Um, dignity therapy has been applied to dementia with uh early to moderate uh dementia.
00:36:17.360 --> 00:36:21.760
Uh there's a woman named uh Bridget Johnson in Scotland who's published on this.
00:36:21.760 --> 00:36:25.840
It's being uh adapted for children and adolescents.
00:36:25.840 --> 00:36:29.039
Uh, and again, many publications to that effect.
00:36:29.039 --> 00:36:34.079
It's being implemented earlier on in the disease trajectory.
00:36:34.079 --> 00:36:47.119
And really, I think what I kind of uh look at as sort of a uh an indicator of um applicability is what I've referred to as kind of existential readiness.
00:36:47.119 --> 00:37:02.000
As life brought me to a place where I feel that the opportunity to reflect on where I've been and where I'm at and where I'm going, um, does that feel like a uh a psychologically meaningful thing to do?
00:37:02.000 --> 00:37:08.719
Um there have been studies on people who have done uh dignity therapy in those with serious mental illness.
00:37:08.719 --> 00:37:15.199
And again, you know, mental illness is an assault on sense of self and sense of personhood.
00:37:15.199 --> 00:37:22.000
I know another study has looked at dignity therapy in patients who are incarcerated and dying in prisons.
00:37:22.000 --> 00:37:25.679
Again, lack of liberty being an assault on personhood.
00:37:25.679 --> 00:37:31.360
So for the storytellers, I would say those are some things to think about.
00:37:31.360 --> 00:37:55.440
The other thing is that even if you don't end up going down the dignity therapy pathway, I mean, lately I've just been thinking more and more about just the profound importance of reminiscence and uh in kind of rereading the works of uh people like Robert Butler, who was one of an American uh uh physician who was really the founder of gerontology.
00:37:55.440 --> 00:38:01.360
Um, and he talked about the therapeutic value of reminiscence.
00:38:01.360 --> 00:38:16.159
And uh when I read that and I read Ericsson, um, who also talked about the last uh kind of developmental stage uh beyond generativity versus stagnation, ego integrity versus despair.
00:38:16.159 --> 00:38:33.440
And I think the connection between reminiscence and integrity is this gives people an opportunity to kind of revisit the stories, to integrate, if you will, to integrate the various threads of their life at a time when that information is available to them.
00:38:33.440 --> 00:38:40.559
They can begin to kind of look at and try and make sense of, you know, where they've been and where they are.
00:38:40.559 --> 00:38:47.119
Uh it's really, I think, quite profound and powerful to engage people in that way.
00:38:47.119 --> 00:38:55.599
And as well, it also provides an opportunity to uh to listen and to value, yeah, to affirm to affirm.
00:38:55.599 --> 00:39:00.880
And I think that's just such an important word that we don't use enough in medicine, but affirmation.
00:39:00.880 --> 00:39:11.920
You know, when we sit down and we take the time to look someone in the eye and say, so there's a lot happening here, but I gotta ask, how are you doing?
00:39:11.920 --> 00:39:21.840
You know, what's what you know, tell me what's going on and listen, you know, uh that kind of of presence and affirmation is uh is really profound.
00:39:22.239 --> 00:39:23.840
Oh, I love that you said that.
00:39:23.840 --> 00:39:28.159
And the word affirmation and affirm, that's what I'm gonna have to use more often.
00:39:28.159 --> 00:39:36.239
I tend to use, you know, acknowledging and validating, but you're right, affirm feels like another level of that.
00:39:36.239 --> 00:39:37.679
I like that.
00:39:37.679 --> 00:40:01.760
And I also like the fact that you touched on what I would call meaning making, you know, like being able to use reminiscence, not do you remember when or remember a time that, but providing questions and prompts that allow a person to think, oh yeah, this is something that I can relate to or something that brings back a memory for me that I want to share more about.
00:40:01.760 --> 00:40:16.800
So I love that you mentioned the reminiscence piece too, because I think we need to be careful about how we're using it and not expecting people to remember specific things, but more just putting ideas out there or having I use you know sensory stimulation.
00:40:17.119 --> 00:40:22.960
Yeah, it's it's not a it's not meant to be somehow a uh a test around cognitive acuity.
00:40:22.960 --> 00:40:25.920
It's it's around changing the existential chemistry.
00:40:26.159 --> 00:40:27.119
Yeah, yeah.
00:40:27.119 --> 00:40:29.519
Oh, very important for sure.
00:40:29.519 --> 00:40:33.119
The dignity therapy, do you provide training on that?
00:40:33.519 --> 00:40:38.880
I do, and there are other places around the world where people are providing uh training.
00:40:38.880 --> 00:40:48.000
Uh before COVID, we used to every year uh host an in-person three-day dignity therapy training workshop.
00:40:48.000 --> 00:40:52.559
We would bring people to come in from around the world and we would offer training.
00:40:52.559 --> 00:40:58.000
COVID did what COVID does, which is it breaks on everything.
00:40:58.000 --> 00:41:02.239
And then we said, well, listen, we can't just sit around and not do anything.
00:41:02.239 --> 00:41:09.840
So is there something that we could do to kind of reinvoke this kind of enthusiasm we had around training?
00:41:09.840 --> 00:41:19.519
And so for the last three years, what we've done is an online three-half day course that we call Dignity in Care.
00:41:19.519 --> 00:41:28.239
And the reason we've we've done, uh we've changed the title and the focus is that dignity therapy, I mean, it's not a panacea.
00:41:28.239 --> 00:41:30.960
It's not as if everybody needs it or wants it.
00:41:30.960 --> 00:41:33.840
Uh, the fact is that that that's just not the case.
00:41:33.840 --> 00:41:40.079
And and even people who have the need to kind of bolster generativity do so in different ways.
00:41:40.079 --> 00:41:45.760
Um, I remember a gentleman who uh we I was talking about this with and said, you know, I'm a carver.
00:41:45.760 --> 00:41:49.760
I'm gonna be and I'm working on a carving for each of my family members.
00:41:49.760 --> 00:41:53.599
That is my form of generativity, not that I use those words.
00:41:53.599 --> 00:42:09.119
So, but what we wanted to have was a workshop that gave everybody kind of the skills so that they would understand that dignity and care is an opportunity and responsibility for anybody who has contact with patients.
00:42:09.119 --> 00:42:29.360
You know, any part, you know, whether you are the person in triage or where you're a person making the first incision in the OR, all of us who have contact with patients have an opportunity to affirm or to disaffirm, you know, the personhood facet of who it is who's now come into our care.
00:42:29.360 --> 00:42:33.119
So um we hold that usually in September.
00:42:33.119 --> 00:42:46.000
Um the reception has been so overwhelming that this coming year we're uh holding a workshop that is going to be geared more for uh North and South American recipients because of the time zones.
00:42:46.000 --> 00:42:46.320
Okay.
00:42:46.320 --> 00:42:56.719
And then another one that will be starting later in the day in Winnipeg, which will be first thing in the morning in kind of uh Australia, New Zealand, and that in that other half of the world.
00:42:56.719 --> 00:42:59.199
So uh yes, we do hold those sessions.
00:42:59.199 --> 00:43:09.199
And again, um the the announcements for um and and all of the information about my work, including recent publications, can be found on dignityandcare.ca.
00:43:09.199 --> 00:43:16.800
And I I was looking in recently and saw that the uh the the timing uh for the new workshops are already posted.
00:43:16.800 --> 00:43:21.519
I don't think uh registration is open yet, but the dates are there if people want to set them aside.
00:43:21.840 --> 00:43:22.880
Okay, that's wonderful.
00:43:22.880 --> 00:43:27.360
That's wonderful information because I wanted to ask you about that, the opportunities going forward.
00:43:27.360 --> 00:43:28.960
Can I ask you one more question?
00:43:29.280 --> 00:43:30.480
As as many as you like, Lisa.
00:43:30.800 --> 00:43:31.119
Awesome.
00:43:31.119 --> 00:43:32.320
Okay, maybe maybe I have two.
00:43:32.639 --> 00:43:33.599
We're on the roll.
00:43:34.400 --> 00:43:35.119
That's right.
00:43:35.119 --> 00:43:40.320
I noticed that you also have virtual, like virtual hospice.
00:43:40.320 --> 00:43:44.079
I wondered if you could share a little bit more about what virtual hospice is.
00:43:44.639 --> 00:43:59.679
Um well, the Canadian Virtual Hospice, um virtualhospice.ca, is at this point the world's largest repository of information on death, dying, law.
00:43:59.679 --> 00:44:07.199
Loss that is available for patients, for families, and for healthcare providers.
00:44:07.199 --> 00:44:10.960
It began, you know, about 20 years ago.
00:44:10.960 --> 00:44:17.280
Well, I can claim responsibility for kind of being there at the beginning and planting those seeds.
00:44:17.280 --> 00:44:22.719
The fact is that over the years, I mean, we've had just extraordinary leadership.
00:44:22.719 --> 00:44:40.800
Our executive director now, Shelley Corey, is somebody who has just been incredible at taking what began as a maybe not so small, but I think a really interesting and exciting idea and growing it into something that's just beyond anything that we could have imagined it would become.
00:44:40.800 --> 00:44:47.840
There, I think three million people a year come to the virtual hospice seeking out information and support.
00:44:47.840 --> 00:44:53.039
So I would say that, and the other thing is that it's available there at no cost.
00:44:53.039 --> 00:44:55.199
It's available internationally.
00:44:55.199 --> 00:45:07.519
And so if you are a patient, if you're a family member, or if you're a healthcare provider and you're needing information about issues related to death, dying, loss, bereavement, uh, go to the virtual hospice.
00:45:07.519 --> 00:45:13.840
And I can pretty much guarantee you that you will find the information there that you're looking for.
00:45:13.840 --> 00:45:23.360
And if you don't, write me and I will forward it to our uh executive director to see what can be done about, you know, uh looking at rectifying that.
00:45:23.679 --> 00:45:25.280
It sounds like a fantastic resource.
00:45:25.280 --> 00:45:32.639
And I don't think there's enough, you know, there's probably not enough supports for individuals going through those parts of life.
00:45:32.639 --> 00:45:36.880
So uh thank you for doing that work and for making that possible.
00:45:36.880 --> 00:45:42.320
I wonder, I'd like to turn the question back on you.
00:45:42.320 --> 00:45:46.639
Could you tell me a little bit on what would be important to you?
00:45:46.639 --> 00:45:49.920
Uh say you weren't able to speak up for yourself.
00:45:49.920 --> 00:45:56.719
Say you're in the hospital for a couple months and you wanted people to get to know you for being you as a human.
00:45:56.719 --> 00:45:59.119
Um, what would be important for them to know about you?
00:45:59.440 --> 00:46:10.239
Um I have a feeling that I mean, my there was a there was an article that was written by um a man named Stuart Farber, and I often uh quote his work.
00:46:10.239 --> 00:46:13.840
Um he was a uh uh a palliative care expert.
00:46:13.840 --> 00:46:17.440
So I guess you know there's you can sort of begin to see the similarities.
00:46:17.440 --> 00:46:19.760
And um he was dying.
00:46:19.760 --> 00:46:35.280
Um I can't remember what his uh primary cancer was, uh, but as he was uh approaching end of life, he published some wonderful pieces uh that were uh published, one of them in the uh the Journal of Pain and Symptom Management.
00:46:35.280 --> 00:46:41.519
And and he talked about, he's actually the one who introduced me to this metaphor of my thread.
00:46:41.519 --> 00:46:48.639
And what he talked about is, you know, that the importance of my life is not about you know the length of time that I live.
00:46:48.639 --> 00:46:59.280
It's about my thread, and that it's impossible for people to provide respectful care without knowing my thread.
00:46:59.280 --> 00:47:06.000
And so, uh, and my thread would probably not be, you know, a whole lot different than, well, I shouldn't say that.
00:47:06.000 --> 00:47:12.800
I suppose each of us are individuals, so of course there are going to be specificities of my thread that make it my thread.
00:47:12.800 --> 00:47:38.639
Um but at 30,000 feet, I mean, my thread probably looks like maybe a lot of other threads when you get close, which has to do with, you know, I mean, family, connections, uh, music, um, scholarship, I mean, you know, uh thinking, um, uh, and being able to think about things, hopefully in a in a critical way that is, you know, made a difference for people.
00:47:38.639 --> 00:47:54.880
Those would be the those would be the you know, the strands uh that I would probably want to pull out to make sure that you know you weren't simply dealing with uh a body that was now the embodiment of whatever ailment you know brought me to medical attention.
00:47:55.280 --> 00:47:57.039
Oh, I love that answer.
00:47:57.039 --> 00:47:57.679
Thank you.
00:47:57.679 --> 00:48:08.079
It was very holistic of you, you know, to add so many elements in there on you know the academic side, but also the music and the conversation and being able to give back.
00:48:08.079 --> 00:48:10.800
And that is really the thread.
00:48:10.800 --> 00:48:14.559
It's weaving through your whole life and tying those things together, isn't it?
00:48:14.800 --> 00:48:16.079
And family and connection.
00:48:16.320 --> 00:48:18.000
And family and connection, absolutely.
00:48:18.000 --> 00:48:19.119
Yeah, at the core.
00:48:19.119 --> 00:48:19.920
Yeah.
00:48:19.920 --> 00:48:24.480
My goodness, this has been such a lovely and deep conversation.
00:48:24.480 --> 00:48:26.400
I so appreciate your time.
00:48:26.400 --> 00:48:27.360
Thank you so much.
00:48:27.360 --> 00:48:29.280
Is there anything else?
00:48:29.280 --> 00:48:40.079
I I know people will want to know where to find you, and you did mention it earlier, but anything else you wanted to mention as well as reminding people where to contact you if they need to or want to?
00:48:40.480 --> 00:48:45.599
No, I think you know, if people are curious, go to uh to dignityandcare.ca.
00:48:45.599 --> 00:48:49.920
Um, there are you know lots of topics that they can delve into.
00:48:49.920 --> 00:49:06.719
We've talked about some of them: the the patient dignity question, uh, dignity therapy, the instrument, uh, the patient dignity inventory that we haven't gotten to, the ABCDs of dignity conserving care, um the platinum rule is something that's about.
00:49:06.719 --> 00:49:16.320
Um and and something that um I think has been really kind of interesting uh of late is what I've been calling uh intensive caring.
00:49:16.320 --> 00:49:20.559
So I would say those are some of the topics that people may want to uh uh to delve into.
00:49:20.559 --> 00:49:24.880
And if they're curious, hopefully they find what they're uh what they're looking for.
00:49:24.880 --> 00:49:28.159
We try and keep the uh that site fairly up to date.
00:49:28.159 --> 00:49:34.400
So if there is something of interest or something timely, um we try and post it on a regular basis.
00:49:34.400 --> 00:49:42.320
And I can and I also have uh a small social media presence on uh primarily on on LinkedIn.
00:49:42.320 --> 00:49:57.199
So anytime there's a a publication or I think something that might be of interest, um it's I use it strictly for professional purposes to say this is happening, it might be of interest if this work is something that you feel drawn to.
00:49:57.760 --> 00:49:58.400
That's wonderful.
00:49:58.400 --> 00:50:02.159
I think I might have to have you back again if you're willing to have another conversation.
00:50:02.159 --> 00:50:04.639
There's so much we didn't touch on already.
00:50:04.639 --> 00:50:09.280
I don't want us to end this conversation without talking about the platinum rule.
00:50:09.280 --> 00:50:13.039
Would you mind just explaining to the listeners what that is?
00:50:13.599 --> 00:50:14.000
Sure.
00:50:14.000 --> 00:50:23.760
What we've said um all along in this conversation is that the perception of the healthcare provider is important, you know, which by the way was really quite an epiphany.
00:50:23.760 --> 00:50:29.920
That's, you know, because I've always thought about palliative care, about being about things we do to the patient or with the patient.
00:50:29.920 --> 00:50:39.679
And now what we learn from our data is that how you see the patient has this profound influence on their care experience.
00:50:39.679 --> 00:50:44.400
So taking that forward then, we began thinking very carefully.
00:50:44.400 --> 00:50:47.920
Well, what shapes the perception of the healthcare provider?
00:50:47.920 --> 00:50:50.079
You know, what about the lens of the provider?
00:50:50.079 --> 00:50:52.719
And it what, you know, what shapes that lens?
00:50:52.719 --> 00:50:56.320
Because that's going to have an influence on how they perceive the world.
00:50:56.320 --> 00:51:03.840
And the fact is, I mean, we're all socialized, we in particular ways that some things have value, some things have left's value.
00:51:03.840 --> 00:51:14.000
We all have our biases, not because we are bad people, but it because we are people, um, and we can be influenced by things we've seen and experienced and so on.
00:51:14.000 --> 00:51:23.360
So intuitively, when you think about, well, what do we do to gauge what somebody might want or need?
00:51:23.360 --> 00:51:26.719
Intuitively, we usually use ourselves as a reference point.
00:51:26.719 --> 00:51:30.800
So if I were going through this, what would I want done?
00:51:30.800 --> 00:51:36.000
Uh golden rule, you know, do unto others you would have done, you know, do unto yourself.
00:51:36.000 --> 00:51:45.440
But what happens if your experience is at complete odds with the lived experience of your patient?
00:51:45.440 --> 00:51:57.679
And I've published a couple of papers on this, one in the Journal of Um Palliative Medicine, and one in, I think it was oh, in jam and neurology was the uh the second one.
00:51:57.679 --> 00:52:06.639
The second one, and maybe that's the one I'll talk about, uh, was called seeing Ellen, um the and uh introducing the platinum rule.
00:52:06.639 --> 00:52:23.039
And my sister Ellen was uh had cerebral palsy, um, had many of the afflictions that somebody with cerebral palsy had, but had a very rich, complex life uh surrounded by people who loved her and who she loved.
00:52:23.039 --> 00:52:31.199
Now was in uh an intensive care unit and um was on the brink of respiratory collapse.
00:52:31.199 --> 00:52:41.679
And the internist who was looking after her was kind of pacing around trying to figure out well, I mean, do we and will we need to intubate?
00:52:41.679 --> 00:52:50.480
And then came up to me and asked me the only question that he asked me about personhood.
00:52:50.480 --> 00:52:55.519
Um, and the question that he asked is, does she read magazines?
00:52:55.519 --> 00:53:01.840
And I thought, that's a very peculiar thing to be thinking about in scientists.
00:53:01.840 --> 00:53:06.480
I mean, my my my sister's life is hanging in the balance, and you want to know she reads magazines.
00:53:06.480 --> 00:53:31.280
And then it dawned on me, you know, thinking about the golden rule, he was thinking, geez, you know, if I if I was in her position, you know, if I had her degree of disability, if I had kyphosis and scoliosis and crappy lungs and, you know, the respiratory capacity that you know couldn't blow a birthday candle, um, you know, maybe, maybe we wouldn't be taking an aggressive course here.
00:53:31.280 --> 00:53:38.079
So the golden rule might have you think about, geez, if that were me, I'm I'm not sure what I would want done.
00:53:38.079 --> 00:53:45.199
The platinum rule, on the other hand, is to say, you know, do unto patients as they would want done unto themselves.
00:53:45.199 --> 00:53:57.199
You know, it's valuing not just what you see, but giving the patient's perspective, kind of in terms of hierarchy, you know, the importance that it needs and deserves.
00:53:57.199 --> 00:54:02.320
So that is the platinum rule, doing unto patients as they would have done unto themselves.
00:54:02.320 --> 00:54:05.920
And when he asked me that question, you know, so does she read magazines?
00:54:05.920 --> 00:54:10.239
And I realized that, geez, you know, he can't see her.
00:54:10.239 --> 00:54:17.199
You know, he can see her blood gases falling, and he can see her kyhosis and her scoliosis, but he can't see Ellen.
00:54:17.199 --> 00:54:23.440
Um, I said, Well, yes, she does read magazines, but only when she's in between novels.
00:54:26.880 --> 00:54:27.840
I love that.
00:54:27.840 --> 00:54:34.639
It's just showing that there's more to her and she can do way more than possibly you're giving her credit for in this moment.
00:54:35.039 --> 00:54:54.719
Well, it it gets back to you know the comment that you made about, you know, see me, you know, and if we fail, if we fail to see uh our patients as persons, then we're going to be letting them down, and we're going to be letting families down, and we're going to be, you know, um complicit in iatrogenic suffering.
00:54:54.960 --> 00:54:55.440
Mm-hmm.
00:54:55.440 --> 00:54:56.079
Mm-hmm.
00:54:56.079 --> 00:54:58.239
Thank you for sharing that story.
00:54:59.280 --> 00:55:00.159
Of course.
00:55:00.480 --> 00:55:02.239
Oh, well, thank you so much.
00:55:02.239 --> 00:55:08.880
I have lots more that we could talk about and I would want to ask you, but I think we could probably spend days doing that.
00:55:08.880 --> 00:55:11.599
So maybe you could come back again sometime.
00:55:11.599 --> 00:55:14.400
And I just truly appreciate your time.
00:55:14.400 --> 00:55:15.119
So thank you.
00:55:15.440 --> 00:55:16.400
Oh, you're quite welcome.
00:55:16.400 --> 00:55:17.920
Thanks for the opportunity.
00:55:19.119 --> 00:55:20.480
Thanks for listening today.
00:55:20.480 --> 00:55:27.280
If you enjoyed this episode, take a minute to look at the show notes for resources and links, and be sure to leave me a rating and review.
00:55:27.280 --> 00:55:32.320
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00:55:32.320 --> 00:55:44.159
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00:55:44.159 --> 00:55:46.960
Take care, and I look forward to the next time.