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Harvey Max Chochinov, MD, PhD, FRSC, discusses dignity-conserving care at the end of life.
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Harvey Max Chochinov, MD, PhD, FRSC, discusses dignity-conserving care at the end of life.
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>> This is Christopher Muth, Associate Editor at JAMA. And I'm interviewing Dr. Harvey Chochinov, who wrote a chapter entitled "Dignity-Conserving Care, A New Model for Palliative Care" in "JAMAevidence, Care at the Close of Life". Thank you for joining us today, Dr. Chochinov. Can you please tell us about yourself? >> My pleasure. So my name is Harvey Chochinov. I am a psychiatrist.
I hold the rank of Distinguished Professor of Psychiatry at the University of Manitoba. For many years was the Director of the Manitoba Palliative Care Research Unit and held Canada Research Chair in palliative care. And currently I'm a Senior Scientist in the Research Institute of Oncology at CancerCare Manitoba here in Winnipeg, Canada. My work over the last many years, since the early 1990s, has been really trying to understand what I kind of think of as the experiential landscape of end-of-life care and that really is what took us into trying to understand this whole notion of dignity near the end of life.
>> Yes, the word dignity comes up frequently in discussions about healthcare at the end of life. What does this word mean in the context of end-of-life care? >> Well, it's interesting you ask that question because it's the very question we asked ourselves many years ago when we came across some data that was coming out of the Benelux countries trying to understand why it was that people were seeking a hastened death. And what we discovered, when we looked at the issue of dignity, is that it's a highly politicized term.
It's a term that can be used to support whatever position you happen to support, whatever side of the political fence you might be on. But in the study that we came across that looked at reasons why patients might be seeking out a hastened death, loss of dignity was the most highly cited reason amongst a group of Dutch physicians who had been involved in death hastening acts and that's really what moved us into some of the studies that we'll likely talk about during this interview, into trying to get a sort of an empirical handle, if you will, on dignity near the end of life.
Of course, the dictionary definition is to be deserved of honor, respect, and esteem. >> And so it does seem that dignity involves at least some component of a personal aspect. The way patients feel about themselves might be encompassed in the word dignity, also the way that they relate to other people and also how they are treated by their healthcare team. Given that each patient's situation is unique, is the idea of dignity at the end of life something that's different for each person? Or is there some common components that are more relevant to almost everyone?
>> Well, I'll respond by harkening back to some of the empirical work that we did. We tried to understand what are the associations that people have with their sense of dignity near the end of life? And we found a variety of things. For many people, the issue of dignity is related to the very wish to go on living or not in the context of facing end of life. For many, it was about symptom control and things like pain and being comfortable near the end of life. For some people, it was about what we call the intimate dependencies of care, so things like bathing, dressing, toileting.
These are things that can have a profound influence on one's sense of personhood, on one's sense of dignity, even the issue of physical appearance. And then when we did some modeling of the data that had derived from the statistical study, we found that probably the most predictive thing was this perception of how people felt that they were seen by others which, in some ways for me at the time with an epiphany, because we tend to think about palliative care in terms of what we do to patients, sort of what we do with patients.
And what the data was really saying to us is that for many patients, palliative care and preserving a sense of dignity has to do with what goes on between our ears, that is how we see or perceive the people that we're providing care to. >> Interesting. In your article, you talk about the dignity-conserving model of care. Can you tell us more about what that is? >> When we looked at the literature, we found dignity was used in a variety of ways, as I mentioned.
But what we didn't find was data that really tried to explicate what does dignity mean to patients who are approaching death? And so we gathered a cohort of dying patients. All of these were inpatients in palliative care. The vast majority had end-stage cancer. And we asked them about dignity, what it meant, what supported it, what undermined it, and it was on the basis of those responses that we came up with a model of dignity at the end of life and that model really serves as the basis of dignity-conserving care.
The model is divided into three primary categories. Illness-related concerns have to do with things that are directly mediated by the illness itself, so things like level of independence, cognitive acuity, functional capacity, symptom distress that is physical or psychological distress. But then we began seeing things within this model that you wouldn't necessarily typically think of that are pertinent in palliative care on a routine basis.
But what patients began telling us when we were interviewing them is that one of the things that can undermine sense of dignity is the sense of medical uncertainty, not knowing what's going to happen, not being able to predict the future and how things will unfold for them, what death will look like, in essence. Another hat that I wear, I'm involved in a project called the Canadian Virtual Hospice, and amongst the most frequently downloaded articles is one called "When Death Draws Near," which really explains to people, in lay terms, what they can expect as their illness advances.
The second major category in dignity-conserving care was something that we call the dignity-conserving repertoire. This consisted of two parts. There is the dignity-conserving perspective, which really have to do with aspects of personhood, who that individual is and their way of being in the world and then dignity-conserving practices had to do with things that they invoked in order to try and preserve their sense of dignity. The final aspect of the model was something that we called the social dignity inventory.
And it consisted of respect for privacy and boundaries for patients who are approaching end of life counterbalanced, of course, with the appropriate kind of supports that people need at this vulnerable time. Another concept that we came up with that I thought was very important is something that we call care tenor or the tone of care. I remember presenting this once to a group of oncology nurses, and they refer to this as the fragrance of care. It's that ineffable something that patients can sense when we walk in the room that says I care about you, I acknowledge you, I see you not only in terms of patienthood but also in terms of personhood.
And then finally within the social dignity inventory, also patients talked about worries about feeling a burden to others and, somewhat related, also talked about something that we call aftermath concerns, which is a concern that the burden of their death will place on those that they're about to leave behind. >> Okay. And then focus a little bit more on those various components of the model of care that you mentioned. First of all just to talk about symptoms, how does effective symptom management help enhance the dignity of patients when they're near the end of life?
>> Well, if you think of dignity and the issue of personhood and then think of somebody who is an extremist or somebody who is not having good symptom control, symptoms have a way of taking over everything. It's all that we can see, and it prevents us from saying the things that need to be said, from feeling the way that we want to feel, from being able to convey things that we feel might be important near the end of life. So good symptom control allows that individual to be who they are rather than simply being the embodiment of uncontrolled distress.
>> I see. And also, I think near the end of life, patients often experience a loss of independence or a loss of their usual functional capacity that I think can be very challenging. What can physicians do to help patients maintain their dignity in a situation like that? >> Some of these things don't necessarily have simple answers and sometimes simply acknowledging these issues is the beginning of really what is a therapeutic response. But even in the face of diminished functional capacity, the inability to do things independently, one can still give patients a sense of independence by allowing them to engage in choices, to have a say in what happens to them, so in spite of their encumbrances of illness, to still feel that they have some sense of control over what's happening to them and their ultimate destiny.
>> And then the article also mentioned dignity-conserving practices such as living in the moment, maintaining normalcy, and finding spiritual comfort. Can you talk a little bit about how focusing on living in the moment and maintaining normalcy can help enhance dignity at the end of life? >> I think at one time in history of palliative care, we used to think that the more death talk that we can introduce into a conversation, you know, the better palliative care that we're delivering, you know, that the focus on end of life and conversations about end of life exclusively are what are important to bring to the patient's attention.
I was just recently with the patient who has an advanced illness, limited prognosis, who talks about the fact that what filled her day was being with her family, was being with her grandchildren, was engaging in all of the activities that she was still able to do. So maintaining this sense of normalcy, not making all of life in its entirety the illness, and keeping up with the usual routines that one can keep up with is an important aspect to maintaining dignity towards end of life.
>> Okay. Another idea that I thought was quite interesting was this idea that an individual can address their legacy while they're still living and that might actually be a productive or helpful thing for the patient to do towards the end of their life. Can you offer examples or ways that people could engage with patients to, sort of, talk with them about their legacy and how that might be helpful in the process of the palliative care? >> Again, this harkens back to the model of dignity at end of life and what we found, amongst the dignity-conserving perspectives, was something that we label generativity, which is really a term that we borrowed from Erik Erikson, the developmental psychologist.
And it's this idea that as we approach end of life, as we mature, is there a time when our psychological energy begins to turn to those who will be the next generation, those that we will be leaving behind? And so on the basis of that issue of generativity, we began thinking of ways that patients might be able to create legacy in a way that could be supportive of their sense of dignity. And, of course, there can be a variety of ways that this might take place, whether it's a recording or a video.
We developed something called dignity therapy which is a brief psychotherapeutic intervention that invites patients, with the guidance of a trained therapist, to really walk through the things that they would want said, that they would want known before they're no longer in a position to be able to convey these things to the people that they're about to leave behind. Dignity therapy is something that is being studied in a whole variety of countries and is something that we also have workshops for on an annual basis here in Winnipeg where we invite people from around the world to train in dignity therapy so that they can have these conversations which are then recorded.
They are transcribed. The transcripts then are edited so that this meandering dialogue can sound more like a pristine narrative. And then that product is returned to the individual to bequeath to those, you know, that they would want to have. >> Is there a component also that helps the patient talk directly with family members or friends about their legacy? >> I think it's something that we always encourage but the time is now. So if there are conversations to be had, if there are things to be said -- for example, again when I think about the dignity therapy protocol, there may be things that have already been said but does one want to take the time again to repeat those things so that you can create memories for the people who will soon be bereft so they can carry that forward with them through time?
>> And related to that, since dignity does involve interactions with others, can you talk about the different social and environmental factors that can influence dignity? >> You know, ideally, being in a place where one feels some sense of tranquility, some sense of privacy, where private conversations can take place between individuals and those that they love and care about; all of those things, of course, are important parts of the environment that can support and, in the absence, can undermine sense of dignity.
But also what's interesting is to, again, think about the fact that offering respect to another individual is something that can either be conferred, it can be offered or it can be withheld. Shortly after this article came out, there was another one that was published in the "Journal of Clinical Oncology" which I called "Dignity in the Eye of the Beholder" with the idea being that what patients are looking for in the eye of the individual who's looking after them, their healthcare provider, some positive reflection or affirmation of who they are -- if the only thing that they see reflected in the eye of the healthcare provider is a symptom checklist, is, you know, is the illness, then they feel they've been reduced to the illness and that personhood somehow has been eclipsed.
But on the other hand, if they feel that they are being affirmed, that they are being acknowledged, that, in fact, can support the dignity of the dying patient. So when we think about the social environment, we need to think about ourselves, the healthcare provider, and the vital role that we play in offering either affirmation or withholding affirmation. >> Yes. And something else you mentioned in your article, which I thought rang true for me, was this idea that when you acknowledge the patient's personhood, you know, and see them as a person rather than a checklist of symptoms, you're also sort of acknowledging your own humanity and the doctor is not necessarily a diagnostician that needs to go and find the precise diagnosis, but you start to view yourself as maybe a human interacting with another human being.
>> Absolutely. And I think for most people who are in palliative care and who work in palliative care and it's probably very true in most areas of medicine, but the stories that people convey, being able to relate to people on that human-to-human level is where much of the gratification, certainly in end-of-life care, can come from because treating symptom distress is something that can become fairly generic or formulaic, but there is nothing formulaic about the kind of relationship that one might have with individual patients.
And it really is there, therein lies the satisfaction that many people get in doing this kind of work, near end-of-life. The patients ultimately will die but knowing that you've made a difference and have made a connection, that's usually -- people working in palliative care say the gratification comes. >> Yes. And then I also wanted to ask you about something else that you mentioned in the article, which is this idea of patients feeling like they're a burden. How common is that near the end of life for a patient to, sort of, feel that they're a burden to their family or friends?
And how can physicians approach that issue and talk with patients who might be concerned about that? >> Of course, feeling a burden to others is not an uncommon thing to encounter amongst patients who are approaching or nearing end of life. And it's a difficult emotional state to be in, to feel that one's life serves no purpose. I really sometimes think of a burden to others as being the equivalent of an existential extremist, that state of mind where you feel that there is no utility, there is no point in your going on because you serve no purpose which begs the question, how does one respond to such a condition?
Because obviously it's a painful one and one that oftentimes, in many studies, has been associated with a desire to no longer go on living and in some studies affiliated with a wish to die or even request for euthanasia or assisted suicide. So how does one approach it? Well, like in most things in palliative care, when one approaches a delicate question like this, you have to be a good listener and listen carefully to what the patient is saying. Of course to try and provide understanding and compassion and sometimes even listening can assuage the kind of suffering that people might be experiencing.
Sometimes, as well, bringing in the family into the conversation so they can talk about their collective experience as a family going through a difficult time. I think the other thing that oftentimes gets overlooked and I think is worthy of mentioning is the whole task of being a care provider. Providing for somebody with a chronic or a serious life-limiting condition is a difficult and can be an onerous task. And so I think we have to encourage families, while they need to be present and available for their loved ones to the extent that they can be, they have to also engage in all manners of self-care.
Of course, that's part of self-preservation and helps to ensure that individual, that family member will be there for the loved one when the time is right and when they are most needed. >> And in a practical sense, at least some physicians feel, sort of, uncomfortable broaching some of these topics. How can clinicians begin conversations about dignity-conserving care with patient? Do you have any tips do offer? >> So we did a study on the patient dignity question where we would have our research nurses broach this question with patients, asking them what they need to know about that individual as a person to take the best care of them.
They would then summarize what the patient had said into a paragraph or two. They would come back to the bedside, read it to them, and ask them if it was accurate. And finally, and this is really the litmus test, would you want this placed on your chart? In other words, is this the lens through which you want to be seen? And what we ended up finding is that in almost 100% of instances, the disclosures, the kinds of things the patients talked about, they said really depicted who they were as a person and almost all of them, without exception, said this is something that they would want placed on their chart.
And what's interesting is that in about 90% of instances, the healthcare provider actually ended up saying I learned something that I didn't know before about this person. Even though they were in my care, I learned something about them as a human being that previously was unknown to me. We also found that by doing this, by having them look at these disclosures from patients, that it was able to enhance their sense of connectedness, influence their attitude in some instances, influence their sense of respect, empathy, and connectedness.
And in many instances, also we found that there was a high correlation between people who were very open to hearing about these stories, to hearing about the individual responses that patients might have to the question who they are as a person and the whole issue of having job satisfaction. >> Yeah. That's a really great idea. So in those studies, did you actually put the patient's response to the question on the chart? >> If we had permission, and as I say in nearly 100% of instances we did, so the response was put on the patient's chart and therefore, I mean metaphorically, became the lens through which the patient was able to say this is how I want to be seen.
>> Yeah. That's great. Is there anything else that you'd like to tell our listeners about dignity-conserving care? >> Well, I'm sure that for most palliative care people who are listening to this, you know, it sounds like old wine in a new bottle, but if a new bottle provides a way of being able to think about these things and teach these things to trainees so that they understand that there are things that are mediated by the illness, in other words the physical, but the psychosocial, the existential, the spiritual, in their entirety, those are the things that are important in delivering holistic quality end-of-life care.
>> Thank you, Dr. Chochinov, for taking the time to speak with us. You've been listening to Chapter 27, "Dignity Conserving Care A New Model for Palliative Care" from "JAMAevidence Care at the Close of Life". This is Christopher Muth, Associate Editor at JAMA with this JAMAevidence podcast.
Segment:0 .
>> This is Christopher Muth, Associate Editor at JAMA. And I'm interviewing Dr. Harvey Chochinov, who wrote a chapter entitled "Dignity-Conserving Care, A New Model for Palliative Care" in "JAMAevidence, Care at the Close of Life". Thank you for joining us today, Dr. Chochinov. Can you please tell us about yourself? >> My pleasure. So my name is Harvey Chochinov. I am a psychiatrist.
I hold the rank of Distinguished Professor of Psychiatry at the University of Manitoba. For many years was the Director of the Manitoba Palliative Care Research Unit and held Canada Research Chair in palliative care. And currently I'm a Senior Scientist in the Research Institute of Oncology at CancerCare Manitoba here in Winnipeg, Canada. My work over the last many years, since the early 1990s, has been really trying to understand what I kind of think of as the experiential landscape of end-of-life care and that really is what took us into trying to understand this whole notion of dignity near the end of life.
>> Yes, the word dignity comes up frequently in discussions about healthcare at the end of life. What does this word mean in the context of end-of-life care? >> Well, it's interesting you ask that question because it's the very question we asked ourselves many years ago when we came across some data that was coming out of the Benelux countries trying to understand why it was that people were seeking a hastened death. And what we discovered, when we looked at the issue of dignity, is that it's a highly politicized term.
It's a term that can be used to support whatever position you happen to support, whatever side of the political fence you might be on. But in the study that we came across that looked at reasons why patients might be seeking out a hastened death, loss of dignity was the most highly cited reason amongst a group of Dutch physicians who had been involved in death hastening acts and that's really what moved us into some of the studies that we'll likely talk about during this interview, into trying to get a sort of an empirical handle, if you will, on dignity near the end of life.
Of course, the dictionary definition is to be deserved of honor, respect, and esteem. >> And so it does seem that dignity involves at least some component of a personal aspect. The way patients feel about themselves might be encompassed in the word dignity, also the way that they relate to other people and also how they are treated by their healthcare team. Given that each patient's situation is unique, is the idea of dignity at the end of life something that's different for each person? Or is there some common components that are more relevant to almost everyone?
>> Well, I'll respond by harkening back to some of the empirical work that we did. We tried to understand what are the associations that people have with their sense of dignity near the end of life? And we found a variety of things. For many people, the issue of dignity is related to the very wish to go on living or not in the context of facing end of life. For many, it was about symptom control and things like pain and being comfortable near the end of life. For some people, it was about what we call the intimate dependencies of care, so things like bathing, dressing, toileting.
These are things that can have a profound influence on one's sense of personhood, on one's sense of dignity, even the issue of physical appearance. And then when we did some modeling of the data that had derived from the statistical study, we found that probably the most predictive thing was this perception of how people felt that they were seen by others which, in some ways for me at the time with an epiphany, because we tend to think about palliative care in terms of what we do to patients, sort of what we do with patients.
And what the data was really saying to us is that for many patients, palliative care and preserving a sense of dignity has to do with what goes on between our ears, that is how we see or perceive the people that we're providing care to. >> Interesting. In your article, you talk about the dignity-conserving model of care. Can you tell us more about what that is? >> When we looked at the literature, we found dignity was used in a variety of ways, as I mentioned.
But what we didn't find was data that really tried to explicate what does dignity mean to patients who are approaching death? And so we gathered a cohort of dying patients. All of these were inpatients in palliative care. The vast majority had end-stage cancer. And we asked them about dignity, what it meant, what supported it, what undermined it, and it was on the basis of those responses that we came up with a model of dignity at the end of life and that model really serves as the basis of dignity-conserving care.
The model is divided into three primary categories. Illness-related concerns have to do with things that are directly mediated by the illness itself, so things like level of independence, cognitive acuity, functional capacity, symptom distress that is physical or psychological distress. But then we began seeing things within this model that you wouldn't necessarily typically think of that are pertinent in palliative care on a routine basis.
But what patients began telling us when we were interviewing them is that one of the things that can undermine sense of dignity is the sense of medical uncertainty, not knowing what's going to happen, not being able to predict the future and how things will unfold for them, what death will look like, in essence. Another hat that I wear, I'm involved in a project called the Canadian Virtual Hospice, and amongst the most frequently downloaded articles is one called "When Death Draws Near," which really explains to people, in lay terms, what they can expect as their illness advances.
The second major category in dignity-conserving care was something that we call the dignity-conserving repertoire. This consisted of two parts. There is the dignity-conserving perspective, which really have to do with aspects of personhood, who that individual is and their way of being in the world and then dignity-conserving practices had to do with things that they invoked in order to try and preserve their sense of dignity. The final aspect of the model was something that we called the social dignity inventory.
And it consisted of respect for privacy and boundaries for patients who are approaching end of life counterbalanced, of course, with the appropriate kind of supports that people need at this vulnerable time. Another concept that we came up with that I thought was very important is something that we call care tenor or the tone of care. I remember presenting this once to a group of oncology nurses, and they refer to this as the fragrance of care. It's that ineffable something that patients can sense when we walk in the room that says I care about you, I acknowledge you, I see you not only in terms of patienthood but also in terms of personhood.
And then finally within the social dignity inventory, also patients talked about worries about feeling a burden to others and, somewhat related, also talked about something that we call aftermath concerns, which is a concern that the burden of their death will place on those that they're about to leave behind. >> Okay. And then focus a little bit more on those various components of the model of care that you mentioned. First of all just to talk about symptoms, how does effective symptom management help enhance the dignity of patients when they're near the end of life?
>> Well, if you think of dignity and the issue of personhood and then think of somebody who is an extremist or somebody who is not having good symptom control, symptoms have a way of taking over everything. It's all that we can see, and it prevents us from saying the things that need to be said, from feeling the way that we want to feel, from being able to convey things that we feel might be important near the end of life. So good symptom control allows that individual to be who they are rather than simply being the embodiment of uncontrolled distress.
>> I see. And also, I think near the end of life, patients often experience a loss of independence or a loss of their usual functional capacity that I think can be very challenging. What can physicians do to help patients maintain their dignity in a situation like that? >> Some of these things don't necessarily have simple answers and sometimes simply acknowledging these issues is the beginning of really what is a therapeutic response. But even in the face of diminished functional capacity, the inability to do things independently, one can still give patients a sense of independence by allowing them to engage in choices, to have a say in what happens to them, so in spite of their encumbrances of illness, to still feel that they have some sense of control over what's happening to them and their ultimate destiny.
>> And then the article also mentioned dignity-conserving practices such as living in the moment, maintaining normalcy, and finding spiritual comfort. Can you talk a little bit about how focusing on living in the moment and maintaining normalcy can help enhance dignity at the end of life? >> I think at one time in history of palliative care, we used to think that the more death talk that we can introduce into a conversation, you know, the better palliative care that we're delivering, you know, that the focus on end of life and conversations about end of life exclusively are what are important to bring to the patient's attention.
I was just recently with the patient who has an advanced illness, limited prognosis, who talks about the fact that what filled her day was being with her family, was being with her grandchildren, was engaging in all of the activities that she was still able to do. So maintaining this sense of normalcy, not making all of life in its entirety the illness, and keeping up with the usual routines that one can keep up with is an important aspect to maintaining dignity towards end of life.
>> Okay. Another idea that I thought was quite interesting was this idea that an individual can address their legacy while they're still living and that might actually be a productive or helpful thing for the patient to do towards the end of their life. Can you offer examples or ways that people could engage with patients to, sort of, talk with them about their legacy and how that might be helpful in the process of the palliative care? >> Again, this harkens back to the model of dignity at end of life and what we found, amongst the dignity-conserving perspectives, was something that we label generativity, which is really a term that we borrowed from Erik Erikson, the developmental psychologist.
And it's this idea that as we approach end of life, as we mature, is there a time when our psychological energy begins to turn to those who will be the next generation, those that we will be leaving behind? And so on the basis of that issue of generativity, we began thinking of ways that patients might be able to create legacy in a way that could be supportive of their sense of dignity. And, of course, there can be a variety of ways that this might take place, whether it's a recording or a video.
We developed something called dignity therapy which is a brief psychotherapeutic intervention that invites patients, with the guidance of a trained therapist, to really walk through the things that they would want said, that they would want known before they're no longer in a position to be able to convey these things to the people that they're about to leave behind. Dignity therapy is something that is being studied in a whole variety of countries and is something that we also have workshops for on an annual basis here in Winnipeg where we invite people from around the world to train in dignity therapy so that they can have these conversations which are then recorded.
They are transcribed. The transcripts then are edited so that this meandering dialogue can sound more like a pristine narrative. And then that product is returned to the individual to bequeath to those, you know, that they would want to have. >> Is there a component also that helps the patient talk directly with family members or friends about their legacy? >> I think it's something that we always encourage but the time is now. So if there are conversations to be had, if there are things to be said -- for example, again when I think about the dignity therapy protocol, there may be things that have already been said but does one want to take the time again to repeat those things so that you can create memories for the people who will soon be bereft so they can carry that forward with them through time?
>> And related to that, since dignity does involve interactions with others, can you talk about the different social and environmental factors that can influence dignity? >> You know, ideally, being in a place where one feels some sense of tranquility, some sense of privacy, where private conversations can take place between individuals and those that they love and care about; all of those things, of course, are important parts of the environment that can support and, in the absence, can undermine sense of dignity.
But also what's interesting is to, again, think about the fact that offering respect to another individual is something that can either be conferred, it can be offered or it can be withheld. Shortly after this article came out, there was another one that was published in the "Journal of Clinical Oncology" which I called "Dignity in the Eye of the Beholder" with the idea being that what patients are looking for in the eye of the individual who's looking after them, their healthcare provider, some positive reflection or affirmation of who they are -- if the only thing that they see reflected in the eye of the healthcare provider is a symptom checklist, is, you know, is the illness, then they feel they've been reduced to the illness and that personhood somehow has been eclipsed.
But on the other hand, if they feel that they are being affirmed, that they are being acknowledged, that, in fact, can support the dignity of the dying patient. So when we think about the social environment, we need to think about ourselves, the healthcare provider, and the vital role that we play in offering either affirmation or withholding affirmation. >> Yes. And something else you mentioned in your article, which I thought rang true for me, was this idea that when you acknowledge the patient's personhood, you know, and see them as a person rather than a checklist of symptoms, you're also sort of acknowledging your own humanity and the doctor is not necessarily a diagnostician that needs to go and find the precise diagnosis, but you start to view yourself as maybe a human interacting with another human being.
>> Absolutely. And I think for most people who are in palliative care and who work in palliative care and it's probably very true in most areas of medicine, but the stories that people convey, being able to relate to people on that human-to-human level is where much of the gratification, certainly in end-of-life care, can come from because treating symptom distress is something that can become fairly generic or formulaic, but there is nothing formulaic about the kind of relationship that one might have with individual patients.
And it really is there, therein lies the satisfaction that many people get in doing this kind of work, near end-of-life. The patients ultimately will die but knowing that you've made a difference and have made a connection, that's usually -- people working in palliative care say the gratification comes. >> Yes. And then I also wanted to ask you about something else that you mentioned in the article, which is this idea of patients feeling like they're a burden. How common is that near the end of life for a patient to, sort of, feel that they're a burden to their family or friends?
And how can physicians approach that issue and talk with patients who might be concerned about that? >> Of course, feeling a burden to others is not an uncommon thing to encounter amongst patients who are approaching or nearing end of life. And it's a difficult emotional state to be in, to feel that one's life serves no purpose. I really sometimes think of a burden to others as being the equivalent of an existential extremist, that state of mind where you feel that there is no utility, there is no point in your going on because you serve no purpose which begs the question, how does one respond to such a condition?
Because obviously it's a painful one and one that oftentimes, in many studies, has been associated with a desire to no longer go on living and in some studies affiliated with a wish to die or even request for euthanasia or assisted suicide. So how does one approach it? Well, like in most things in palliative care, when one approaches a delicate question like this, you have to be a good listener and listen carefully to what the patient is saying. Of course to try and provide understanding and compassion and sometimes even listening can assuage the kind of suffering that people might be experiencing.
Sometimes, as well, bringing in the family into the conversation so they can talk about their collective experience as a family going through a difficult time. I think the other thing that oftentimes gets overlooked and I think is worthy of mentioning is the whole task of being a care provider. Providing for somebody with a chronic or a serious life-limiting condition is a difficult and can be an onerous task. And so I think we have to encourage families, while they need to be present and available for their loved ones to the extent that they can be, they have to also engage in all manners of self-care.
Of course, that's part of self-preservation and helps to ensure that individual, that family member will be there for the loved one when the time is right and when they are most needed. >> And in a practical sense, at least some physicians feel, sort of, uncomfortable broaching some of these topics. How can clinicians begin conversations about dignity-conserving care with patient? Do you have any tips do offer? >> So we did a study on the patient dignity question where we would have our research nurses broach this question with patients, asking them what they need to know about that individual as a person to take the best care of them.
They would then summarize what the patient had said into a paragraph or two. They would come back to the bedside, read it to them, and ask them if it was accurate. And finally, and this is really the litmus test, would you want this placed on your chart? In other words, is this the lens through which you want to be seen? And what we ended up finding is that in almost 100% of instances, the disclosures, the kinds of things the patients talked about, they said really depicted who they were as a person and almost all of them, without exception, said this is something that they would want placed on their chart.
And what's interesting is that in about 90% of instances, the healthcare provider actually ended up saying I learned something that I didn't know before about this person. Even though they were in my care, I learned something about them as a human being that previously was unknown to me. We also found that by doing this, by having them look at these disclosures from patients, that it was able to enhance their sense of connectedness, influence their attitude in some instances, influence their sense of respect, empathy, and connectedness.
And in many instances, also we found that there was a high correlation between people who were very open to hearing about these stories, to hearing about the individual responses that patients might have to the question who they are as a person and the whole issue of having job satisfaction. >> Yeah. That's a really great idea. So in those studies, did you actually put the patient's response to the question on the chart? >> If we had permission, and as I say in nearly 100% of instances we did, so the response was put on the patient's chart and therefore, I mean metaphorically, became the lens through which the patient was able to say this is how I want to be seen.
>> Yeah. That's great. Is there anything else that you'd like to tell our listeners about dignity-conserving care? >> Well, I'm sure that for most palliative care people who are listening to this, you know, it sounds like old wine in a new bottle, but if a new bottle provides a way of being able to think about these things and teach these things to trainees so that they understand that there are things that are mediated by the illness, in other words the physical, but the psychosocial, the existential, the spiritual, in their entirety, those are the things that are important in delivering holistic quality end-of-life care.
>> Thank you, Dr. Chochinov, for taking the time to speak with us. You've been listening to Chapter 27, "Dignity Conserving Care A New Model for Palliative Care" from "JAMAevidence Care at the Close of Life". This is Christopher Muth, Associate Editor at JAMA with this JAMAevidence podcast.
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