Geraldine Doogue: Now a change of pace from childhood memories of Anne Manne, to the other inevitable end-of-life spectrum: illness and death and the quite rapid strides being taken by the relatively new discipline of palliative care, and the challenges it’s throwing out to broader accepted medical practice.
Over the years there’s been quite a lot of lay writing about how people feel and react when death is near, but my next guest has been gathering notice internationally for his systematic reflection on the role of medical professionals at the core of this time of people’s lives.
Professor Harvey Chochinov holds many posts, chief among them, professor of psychiatry and community health sciences at the University of Manitoba, and director of the Manitoba Palliative Care Research Unit at Cancer Care Manitoba, and he’s known as the founder of the relatively new intervention, Dignity Therapy. He’s speaking today at the Inaugural Whole Person Care National Symposium in Sydney, and it’s my pleasure to welcome him. Professor Chochinov, welcome to Saturday Extra.
Harvey Chochinov: Glad to be here.
Geraldine Doogue: Now in one of your papers, Professor Chochinov, you quote the late Anatole Broyard, the former editor of The New York Times Book Review, and it’s a great quote: ‘To the typical physician, my illness, metastatic prostate cancer, is a routine incident in his rounds, while for me it’s the crisis of my life. I’d feel better if I had a doctor who at least perceived this incongruity. I just wish he would.’ A very heartfelt appeal, I would have thought, but a common one?
Harvey Chochinov: Absolutely. Broyard, by the way was a wonderful writer; the remainder of that quote I believe he says something to the effect ‘I want a physician who will not only grope for my prostate but for my soul.’ Patients want to look towards healthcare providers, and know that we are seeing something more than the lump or more than the aberrant blood test, that somehow we are seeing them.
We’ve done some research on the issue of dignity, and in fact found that the thing that’s most predictive of whether someone’s dignity is intact or not, really depends on how they perceive others to experience them, which is extraordinary when you think about it. And very much implicates the position of the healthcare provider. In fact I was so taken by the data that I wrote an article called ‘Dignity in the Eye of the Beholder’, and we the health care providers, behold patient and patient experience; and the message of the paper is that the reflection that patients see of themselves in the eye of the beholder needs to be one that’s affirming of their sense of dignity.
Geraldine Doogue: Look, it just prompts so many thoughts, because maybe the orthodox expectation — and I have to say maybe I would have thought this myself — is that above all what you want when you are terribly ill, is the competence, the practical competence of the specialist, or the doctor that you’re dealing with. You’re really challenging that notion, you’re saying that it’s not one or t’other, it’s not pragmatic competence versus a sense of compassion, the two absolutely can go in the one form.
Harvey Chochinov: Patients absolutely do want competence but isn’t it interesting that we’ve parsed out competence to be exclusive of the humanities of care. So we can say we can have somebody who was profoundly technically competent, but they have absolutely no people skills. And the truth is, there have been studies that have been done looking at why is it that patients receive complaints at the level of the Royal College of Physicians and Surgeons, and in 80% of instances the reason that physicians get into trouble is not because of competence issues, it’s because of tone issues, and tone of care. It is because of lack of communication abilities. So we know that of course patients want competence, they want the best of care, but the best of care should include the humanities of care.
Geraldine Doogue: In a way, it just sounds like very good bedside manner. You might say well of course.
Harvey Chochinov: What we say to health care providers oftentimes to simplify this, is you know, just be a good person, you know. I don’t know if it translates well in Australian parlance but in Canadian terms, trust your gut. We know, and what the data shows is that physicians get into trouble. So I don’t think it’s that anybody has bad intention necessarily, I think the reality is that we tend to think of this as somehow being outside of the realm of delivering healthcare. This is something we can refer to the social worker, to the pastoral care provider, somebody will look after the ‘niceties of care’, while I will do medicine. Well, pardon me, but medicine should include those core values of medical professionalism, like kindness and respect.
Geraldine Doogue: And compassion, which you put a lot of emphasis on. Can compassion be learned? Let’s say we have a specialist who’s a very good diagnostician, which I would actually like if I’m very ill. But they just don’t think of these things as important. Can they learn it?
Harvey Chochinov: I think the difficulty with compassion and trying to teach it, when I look at various different programs around the world that have attempted to do this, is they’re — I’ll just use an analogy — a bit like a shoe store that only sells size 9. You know, it fits some people, but not everyone. I think to make care providers more compassionate, you need to have them find what puts them in touch with their own sense of vulnerability, mortality, and for some people, I was at a…
Geraldine Doogue: Might that not, dare I say, might that not undermine their sense of competence? Isn’t it possible that that’s the very thing you would least want in someone who’s going to have to go through lots and lots of decision-making in a day?
Harvey Chochinov: Physicians need to make decisions, and they need to be able to compartmentalise. The truth is that when your surgeon is about to make the first incision, what you want him thinking about the appropriate anatomical landmarks; not the fact that this is a young mother with two children and single, and so on and so forth. But unless he or she is planning on only dealing with anaesthetised patients, patients deserve to have somebody who can at least acknowledge that there is something more to them, than their illness. I was saying that I was at Harvard in Boston a couple of years ago and basically explained to the students that the data, and there is good data to support this, that the data metaphorically says that you are a mirror. Patients and families, every time they have contact with you, they’re looking at that reflection and if they see only their illness, then they feel that they have vanished, they feel they’ve disappeared.
Geraldine Doogue: My guest is Professor Harvey Chochinov, founder of a new end-of-life intervention called Dignity Therapy, which is maybe what we should get to now, Professor Chochinov. Is it a very practical, intense type of intervention? I haven’t heard this phrase before.
Harvey Chochinov: One of the pieces that we came upon during the course of our studies, is that for some patients, besides all of the other anxieties that might undermine sense of dignity, is a sense that nothing of their essence or of their personhood would survive beyond the moment of death, that they will die in the memories of those they loved and life will not have left any ripple effect. In developmental psychology, we refer to this as generativity.
So what we’ve done is we’ve created a therapeutic intervention, if you will, in which they’re invited to discuss things that matter to them, parts of their life perhaps that they would want remembered or known, things they’ve learned along the way, accomplishments, things they feel proud of, hopes, wishes or dreams for individuals, or loved ones, specific advice — these interviews are guided by a skilled therapist, they are edited so that we can turn what is sometimes a meandering dialogue into a more pristine narrative, and then given as a document to the patient, for them to most often bequeath to a family member or loved one.
It all sounds lovely, and perhaps to some extent intuitive, but we live in an era of evidence-based medicine, and we believe that if we’re going to change the field of medicine, or to change the field of palliative medicine, we have to generate good evidence. And so we’ve just finished — we’ve done a couple of studies on dignity therapy, and in fact one of our collaborators, Dr Linda Christiansen in Perth, Australia, has been a long-time research colleague. Together with the group in Perth and in Canada, we did a study on dignity therapy and we showed that 95% of patients were not only satisfied but nearly 80% said it enhanced their sense of dignity, 70% to 75% said this gave them a sense of meaning and purpose, a portion said that it helped them to prepare for death and just over 80% said they believed that it already had, or would help their family member.
Geraldine Doogue: Did it — I think you report an increased will to live on behalf of nearly half the people whom you worked with — what about a more peaceful acceptance for letting go, for dying, is that something that you seek? Is it a by-product?
Harvey Chochinov: I think the thing about nearing end of life is that people cope with it in a variety of ways. Some patients seem to hang on to this construct, will to live for a very long time, which to me is not so much a palliative care finding as it is a finding about the human condition, the wish to be here seems to be something that sustains us and seems to be sustained for a very long time. I don’t think it’s something that we have to try and change or tamper with, it is what it is.
On the other hand, sometimes, for some patients, offering something that engenders a sense of meaning and purpose, can have an influence on outlook and the wish to go on. A story I often tell is of a gentleman who we enrolled in dignity therapy who actually told me that if he could push the button, if he could end his life now, that he would. He decided that breathing could become redundant, there was no point in going on. And so I explained what dignity therapy was about and asked if he would be interested, and he was actually quite taken with the idea, he was a lovely gentlemen, he was taken with the idea and ‘Yes, I would very much like this’, and I arranged to come back the next day. And as I exited his room, I said to him, ‘By the way, if you could press the button right now, would you?’ And he looked at me with this sheepish smile and said, ‘No, we have to do this first.’
Geraldine Doogue: Very interesting. Look finally, just to go back to another quote, Francis Peabody, seeing we started with Broyard — this is him writing in 1927: ‘One of the essential qualities of the clinician is interest in humanity for the secret of the care of the patient is in caring for the patient.’ And I notice that you actually suggest that doctors take on life, literature, films, anthropology, that they throw themselves into the fullest experience of life, not merely the acquisition of the most orthodox medical skills. Why does that matter?
Harvey Chochinov: What I suggest is that people be true to themselves and that what they do should be done with some specificity so that it resonates as personally meaningful. When I was visiting Harvard Medical School the medical students told me that everyone had to keep a diary, reflecting on their experience. And so I asked the medical students, and there were no supervisors around, I said, ‘So, does this work?’ And half of them said it was gorgeous, that it helped them tremendously. And the other half confessed that they were glad that they had spouses or partners who enjoyed creative writing.
So my point is we need to encourage doctors to do things that put them in touch with the experience of living so that they understand that they’re not so different from their patients, and that I think, is what engenders compassion. The truth is, at the end of the day, I mean we all need good care and we’re all deserving of good care, and be mindful of the psychological, the social, the spiritual, the existential realms a patient experienced, I think is the only way that we’re going to be able to deliver holistic, or what I’ve called dignity conserving care.
Geraldine Doogue: Professor Chochinov, good luck to you, all power to you. Thank you very much for joining us.
Harvey Chochinov: It’s been my pleasure.
Geraldine Doogue: Harvey Chochinov is professor in the department of psychiatry at the University of Manitoba, and there’s a link to the Whole Person Care National Symposium on our website where he’s been visiting Australia in order to speak at it. And again, I’d love to hear back from you; I think it might prompt a lot of reflection from listeners.