The Roots of Palliative Care: Michael Kearney, Sue Britton, and Justin Sanders

Eric 00:29

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:42

This is Alex Smith.

Eric 00:43

And Alex, who do we have with us today?

Alex 00:45

We are so honored to have such esteemed guests join us today. Eric. First we have Michael Kearney, who’s a palliative and hospice doctor at the Cottage Hospital in Santa Barbara and author of several books. His latest book is called Becoming Forest A Story of Deep Belonging, and he’s the founder of the Becoming Forest Project. Michael, welcome to the GeriPal Podcast.

Michael 01:06

Thank you so much.

Alex 01:08

And we’re delighted to welcome Sue Britton, who was the first nurse in the very first palliative care unit in Quebec at the Royal Victoria Hospital in 1975. Sue currently works as a yoga teacher. Sue, welcome to the GeriPal Podcast.

Sue 01:26

Thank you. Lovely to be here.

Alex 01:28

And we are delighted to welcome Justin Sanders, who proposed this podcast episode today. Justin is an old friend and a palliative care doc and researcher and is director of palliative care at McGill University in Quebec. Justin, welcome to GeriPal.

Justin 01:42

Thank you so much. Delighted to be here.

Eric 01:44

And we’re going to be talking about the roots of palliative care, and I think importantly, not just looking back, but what does that mean for our future as hospice and palliative care providers. But before we do, I think, Justin, you have a song request for Alex.

Justin 01:59

Absolutely. It’s I Got a Name by Jim Croce.

Eric 02:02

And Justin, gotta ask, why’d you choose this song?

Justin 02:05

Well, first of all, this song came out in 1973, which is the year that Balformant went to St. Christopher’s Hospice in London with the intention of learning from Cicely Saunders about hospice medicine, which became palliative care. The other reason is because I think many of us are confronted constantly with questions about why we don’t change the name of palliative care. And as I and others have suggested, I think it’s more important to change how we think about palliative care than to change the name. So I think it’s important to assert that we got a name. And finally, my parents love Jim Croce. And so this is a nice opportunity to hear a song that we love.

Eric 02:43

Great.

Alex 02:45

(singing)

Eric 03:40

Great song selection, Justin.

Alex 03:43

That’s a fun one. Thank you, Justin.

Eric 03:45

Okay, Jess, I’m going to actually start off with you. We’re going to have you be our co host. But I got a question for you. Why did you think about this, the roots of palliative care? Like why did you think it was important to do a GeriPal podcast on it?

Justin 04:00

Yeah, that’s a great question. I have felt as I’ve come through this field over the last, I guess 2003 is when I realized I wanted to be a palliative care doctor. So almost. Well, I guess just over 20 years ago. And what I’ve come to see over time is that the clinicians that come into our field are less and less aware of where we come from. What I think so special about palliative care is that there’s some really radical and important ideas that sort of undergird our work and that provided a foundation for our work.

And I think that’s really different from some other fields in medicine. And I think it’s important that we remain connected to them because it’s part of how we can be most efficacious, I think, and how we can do this work most sustainably. And so that’s what I was excited to sort of have an opportunity to visit with you and with these amazing people on the show, like this story of this field.

Eric 04:55

And can you give me an example of what the like one radical idea that comes to your mind that kind of underpins pal?

Justin 05:02

Yeah, absolutely. Well, I think there’s a couple radical ideas. The first is the. The idea of total pain, this concept that Cicely Saunders articulated, which sort of is at the heart of how we understand suffering in this field and also how we respond to it. The second is an idea that Michael and Balfour Mount were really, I think, instrumental in articulating, which is this idea that healing is possible through the course of serious illness. And if medicine sees dying as a series of failures, I think the idea that something is possible there, that people can experience a sense of Integrity or growth as they approach the end of their life and on up until the end and beyond is really radical.

Alex 05:44

Great.

Eric 05:45

And I want to make sure we talk about those issues like healing and the nature of healing. We did a Nature of suffering podcast with Naomi Sacks and B.J. miller. We’ll plug, we’ll put in the show notes, but we want to make sure that. But I want to go back in time now. Michael, I’m going to start off with you. It’s 1974. You’re a disgruntled medical student. You’re figuring out what you want to do. You’re thinking about dropping out of medical school. And somebody said something that changes the course of your life. What was it?

Michael 06:16

Yeah, that’s about right. I was thinking of leaving my medical studies and I sat down with a mentor and told him this. And he said, well, before you do visit this place in London called St Christopher’s Hospice. And he used a phrase which was, it’s a place of healing. And he said, my sister, his sister worked there. She was a hematologist. And so that’s how he knew about it. But it was something about that phrase, it’s a place of healing. I didn’t, you know, didn’t get it conceptually, but it just somehow resonated. And so I went and I kind of reached out and found that they were doing a one week training, multidisciplinary training, which they offered me a place on as a medical student. So I was there for a week. And yeah, I kind of think I got a sense by the end of that week what he meant by that.

Eric 07:16

I also love because I was just listening to a video of yours.

Alex 07:20

It was what it was the first in a series of talks. Justin, could you plug the series?

Justin 07:26

Absolutely. I would encourage everybody to put into their browser McGill Palliative Care National Grand Rounds. This is a series of 10 lectures per year that we’ve just started with Michael as the first speaker for the Balfour Mount lecture, which just happened January 21st. And we have 10 lectures per year for the next seven years. And so at least. So we encourage people to come to register and come listen. We have over 1200 people already registered for the talk and about 600 people attended Michael’s talk in January.

Eric 07:58

And we’ll have links to it. But what I remember from that is at the end of your week long rotation, Michael, everybody gets a chance if they wanted to sit down with Cicely Saunders, social work nurse, doctor extraordinaire, you sit down with her. I couldn’t get this out of my head. She has like a glass of sherry next to her. And I think Balfour Mount was like, next to her too. And that was your first introduction together?

Michael 08:26

Yeah, that’s right. That’s right.

Eric 08:29

I gotta ask though, because this is on my mind. I’ve heard her name for the last 20 years. There was a great BBC show with her, like a podcast, like way back when. It wasn’t really a podcast, but what was she like as a person?

Michael 08:46

She was pretty formidable. She was about 6 foot 3. And I think that was partly. She started her career as a nurse and probably her heightened that worked against her. She put her back out. She retrained as a social worker, and it was while she was a social worker that she began to formulate her ideas for better kind of end of life care, which was to become hospice care, modern hospice care. And then she retrained as a physician because a mentor of hers said to her, you’re talking about, you know, a revolution in medicine. You’re talking about a paradigm shift in healthcare. And I’m sad to say it, but I don’t think doctors are gonna listen to a social worker. And so she had all that experience, but yeah, she was a larger than life presence. Kind of could be tough, could be very direct, but an enormous heart. A huge heart and huge intelligence.

Eric 09:53

Sue, did you ever have a chance to see her?

Sue 09:55

Oh, I did. I did a few times, actually, yeah. And I think that nurses were doing this kind of care all along. The only thing that we couldn’t do is prescribe for medication, but we were doing a lot of that bedside work. I was trained in the hospital where it started, and we were trained to be bedside nurses. I was working on a surgical ward when Dr. Mount was going around talking about his experience at St Christopher’s but also the value in palliative care. And, well, I decided that I wanted to go and work there, although I was on a surgical ward and somebody said, why would you want to go and work there where everybody’s dying? I said, well, what do you do with the patients that are here on this ward? And she said, I run like hell.

So that was the reality, actually. People, some people did not like being that close. And it was just the opposite for me. I loved the relationship that we developed and the fun we had. We had a lot of fun, actually. I think that was from a point of view of how do you cope with sadness and grief, is that you find a funny bone somewhere and you have. You release with the laughing. We used to laugh all the time. So I think that I don’t know what it’s like now because I haven’t been there for a while. But I think laughter is a good release. It gets rid of the things that are building up. And they did. When we first started, they were concerned about the fact that nurses were going to be only working with people that were very ill and people that were grieving.

So they actually asked a psychiatric group from Toronto to come and evaluate us every so often. And the interesting thing they found was that our addictions had elevated. We were drinking more, we were smoking more, we were eating sugar more. That was how we were dealing with it.

Justin 11:54

Sue, you know, it’s funny if I can interject one of the things I often say to the. To people who aren’t familiar with our work in the hospital, including the administrators, as I’ll often say, that our unit is the one place in the hospital where people consistently experience joy. And so I love hearing what you’re saying about how it was a place of laughter. And I think that that’s true. Like part of our work is giving people the opportunity to experience something besides sorrow and to really experience joy.

Sue 12:23

Yeah. And I think that the richness of our relationships, like I have kept involved in a lot of the people that I was working with, mostly at home, where people were dying at home. Most of them were dying at home. But I’ve still like. I had coffee with a gal that 40 years ago, I took care of her young husband. He was 39 and she was 36, and they had a one year old daughter and now she’s in her 60s, her daughter 38, with a one year old son. And that’s that whole cycle which has been so wonderful.

Eric 12:58

So I gotta ask, because we’re talking about the unit that was created, how did it start? The first unit?

Sue 13:07

It started on the unit with 12 beds.

Eric 13:10

And where is this at again?

Sue 13:11

The Royal Victoria Hospital, Montreal.

Eric 13:14

Okay.

Sue 13:15

There was 12 beds, there was a head nurse for home care, There was only one head nurse doing that and a consult nurse that was seeing patients on other wards that were a likely admission choice. But that’s how it started. It grew into where I went into the home care component. I spent 20 years doing home care and we were keeping 100 patients at home between four nurses. We each had an average between 23 and 25 patients each. And the main thing is to get to the patient and family before they’re tired out. If the family’s already exhausted, we’re going to have a Hard sell to stay at home. I would put people on hold. If things got settled, they could go on hold. And when they needed our care again, they would just let us know and we would go back and see them on a regular basis.

Eric 14:15

What year was this? Real quick and I’ll just ask.

Sue 14:18

Well, we started in 75 and our home care program closed in 97.

Eric 14:26

Go ahead, Justin.

Justin 14:27

Oh, I was gonna say. So, yeah. January 21, 1975 was the opening of the unit. And I would just plug this book. This is a book called 10,000 Crossroads. This is Balfour Mount’s memoir. And he really talks in great extreme depth about how all of this came to be. And he came to be the person in this position. And one of the interesting things about this to me is that, you know, when Balformount wanted to create a space in Royal Victoria Hospital for to take care of people at the end of life, predominantly cancer patients, he really wanted to call it a hospice. But it was in part because of this place in Quebec and people’s ideas about what hospice would mean to the francophone public here that he really looked around for another name. And the name that he came upon, which he writes about as sort of coming to in the shower, was that was palliative care. And so, you know, we have a lot of ideas about what, you know, and a lot of evidence to show what palliative care can be now. But. But at its origin, it was really just another word for hospice.

Eric 15:30

What does hospice mean in the Francophone. Yeah, population.

Alex 15:34

What’s he trying to avoid?

Justin 15:36

Well, so, you know, for example, I can read from this. A hospice at the Royal Victoria Hospital, possible au Quebec. That’s what his friends said, which means, you know, not possible here. The term hospice among the Quebec Francophones brought the. Brought to mind the neglect and warehouse style nursing home home shabbiness of les hospices. Les hospice in France. So it had a really like a strong connotation for a place for the poor and the destitute.

Alex 16:05

Oh, interesting. I hadn’t heard that part of the story before.

Sue 16:09

Yeah, well, people got frightened, but even by hearing, once they heard what palliative care was all about, they were afraid. People thought you had to change the name, but, you know, it was just being comfortable with being able to talk about how you felt was the important thing.

Eric 16:27

People still talk about changing the name.

Justin 16:29

Yeah, yeah.

Alex 16:30

It’s an ongoing conversation.

Justin 16:35

Michael. I’m curious if I could ask a question of Michael as having been around for a long time in this world. One of the things that Bell writes about is how Cicely Saunders and Robert Twycross were really upset with. They didn’t like the term palliative care. I’m curious if you were around at all when some of these discussions were taking place. Obviously, the UK was the first to have a palliative medicine specialty, but do you recall what that was like in those early days and sort of what the thinking was about this name?

Michael 17:05

You know, the short answer is no, I wasn’t part of those discussions. You know, I was part of the discussion later. When palliative care became a. Was first recognized as a medical specialty in the UK in 1987, I think it was, you know, and what that meant to be a medical specialty. I was part of those discussions, but no, I wasn’t part of that. But I know Robert Twycross, who was at Michael Sobel House in Oxford. He was the sort of researcher at St Christopher’s he was the one who was actually looking at what. What happened when you gave morphine or diamorphine, which was also available for prescription in, in the UK at that time on a four hourly basis around the clock. You know, it was kind of just being done for the first time. It was never given that way before. And that was before extended release opioids were available.

But he was right at the beginning and kind of researching that and I think getting credibility for this new field. And he wrote a paper that was published, gosh, I think it was 1979 in the proceedings of the Royal College of Medicine in the uk. And the title of the paper is Hospice Medicine Redressing the Balance in Medicine. And really kind of just seeing how philosophically what hospice was about was in a way bringing back, well, not just attention to people at the end of life and their families, but bringing back a certain away from the kind of technology of medicine, coming back to the bedside as sue was talking about, coming back to the communication, coming back to the sort of heart element of it.

Eric 19:05

All, which is really interesting because I feel like we’re constantly struggling with that. And I’m not sure if that’s a struggle or if it’s just innate with our work. And it sounds like even at St. Christopher’s there was this. They’re doing research, they’re doing the hard Western medicine research, like figuring out what to do with opioids, publishing this stuff and also recognizing that there’s so much more to palliative care than just those prescriptions, than just the science part. There’s the heart part too.

Sue 19:38

Well, one of my Colleague, doctor, colleagues in home care. He always said, listen to the patient. That’s where we have to be. We have to listen to them.

Eric 19:48

Yeah.

Michael 19:49

And I think that ties in with the concept that Justin referred to earlier, that Cicely Saunders articulated the concept of total pain. And kind of recognizing that that’s what our patients are talking about and that their symptom issues, whether it’s pain or nausea or shortness of breath, whatever it is, is really like the tip of the iceberg, that below the surface you’ve got all these other dimensions that are feeding that symptom, like the social, the financial, the existential, and the staff, you know, the actual interaction with those who are involved in the care and recognizing that it’s just far more than a physical symptom. And that kind of, you know, really requiring a holistic response. It’s not just enough to be very.

A good prescriber, a good symptom control manager. And that’s why, you know, palliative care from the get go, and sue can speak to this as well, has been very much multidisciplinary care. So nurse presence is. Is right at the center. But, you know, you’ve got social work, you’ve got chaplaincy, and patients are important part of that. They’re just a part of it.

Alex 21:14

Yeah, go ahead, Justin.

Justin 21:16

Oh, I was just gonna say I’d really encourage everybody to read a new book, everybody in our field to read a new book by Joe Wood from the uk. He was a researcher at King’s College London, and he wrote a book called Cicely Saunders and Total Pain. And not only is it a beautiful book on its cover, but it really gets into the history about how Cicely Sanders formulated and talked about total pain through the course of her career. And it’s an extraordinary read.

Eric 21:43

So I got a question then. So I’m going to also plug. Michael, you wrote a paper in 1997 questioning, like, is the field just becoming symptomatologists? Are we losing that thing that makes palliative care special, that Dame Cicely Saunders talks about those. Those other components when we’re just focusing on symptoms.

Alex 22:08

Yeah, the reaction to the diamorphine.

Eric 22:10

Yeah, the reaction to the diamorphine. It sounded like you were concerned about this even back in 1997.

Michael 22:18

Yeah, I was concerned about it. And I was absolutely delighted at the time, as everybody in the field was back then, that palliative care and now palliative medicine was a recognized specialty. Realizing this just gave us a place at the table in A way that we had or. And I think it’s made all the difference. But yeah, I think if we, if we, you know, the, the phrase that launched the hospice movement was a Polish, a young Polish man who was dying, who, who was being cared for by Dr. Saunders, who said to him, you know, what else can we do to help you? And he said to her, I only want what’s in your heart and in your mind.

And she just took that as the phrase. And then she kind of went on to talk, not tender loving care, but effective loving care. And that’s why we need the research piece. That’s why we need the hard science as well as the human element. And my concern in palliative medicine becoming a specialty was and kind of saying, yeah, no, we’re a multidisciplinary team. We’ve got social workers, we’ve got chaplains, we got nurses who can do the human piece. We doctors can really just kind of specialize, kind of focus on the biological part of the job. And I knew that that’s not what Cicely Saunders had in mind at the get go, nor Bell for that matter.

Balfour amount. And I think, I think there’s a recognition of the value of each specialist on the team, including the physicians having a particular place with symptom management. But to kind of think it’s just about our skills and our interventions and not about our presence, not about what we bring in our interaction. And over time I’ve come to see that piece as being more and more central.

Sue 24:24

I just want to add something to that. Is that how we presented ourselves? That was the patient and the family were of equal importance. And I think that’s so important, it’s not there today. I’ll tell you, I’m going through the healthcare system with my husband and all I can think of, it’s not palliative care anymore.

Eric 24:44

Why is that?

Sue 24:46

I don’t know. I mean, in the 70s I thought we had a very compassionate society. At that time in the 90s it’ started to get into me, the me generation that doesn’t work. And now I think we’re just caught. The compassion is not there. I’ve not had any doctor come and tell me what the results of what my husband’s been going through. I think it’s so foreign. I think, my God, we’ve lost some of the really important things.

Eric 25:17

But I also HEAR Back in 1970 there was a young disillusioned doctor who even back in 1974 was disillusioned with medicine. And I Also hear from you, sue, that even on the wards there were nurses that didn’t quite get everything that you were talking about with palliative care back then. So how much has times really changed versus we haven’t changed much?

Justin 25:49

Not changed enough?

Sue 25:50

No, I don’t think we’ve changed enough.

Justin 25:53

You know, it’s one of the things I find really compelling and sad is that often in our palliative care unit I hear people say things like, this is the first time I felt really cared for in our healthcare system. And that’s, you know, and that’s often at the very end of life that we hear that. And I think that in a time where care is becoming increasingly fragmented and transactional and patients feel less and less like people and more and more like numbers, the ideas that are at the core of our field are so important.

They’re so, they’re, they’re even more important now maybe than they’ve ever been because, you know, clinicians also get lost in this shuffle and they, and I think it’s part of the key to our sustainability to lean into relationships in the way that it was considered conceptualized at the very beginning of our field. Many people aren’t familiar with, you know, Balfour Mount’s work to develop, you know, along with people like Michael, the, the field of whole person care, which was, which was developed at McGill as a, as a, as sort of based on the skills that we developed in caring for people with serious illness, you know, and at the end of life. But he didn’t want it to get sort of isolated in palliative medicine or palliative care.

He wanted it to be something, he saw the value of this for all clinicians, all physicians. And so he separated out some of these ideas that we were learning and created this sort of concept of whole person care that sort of then became a formal curriculum. And I think over time has sort of come to be sort of thought of as person centered care. But that’s really comes from our field. And I think it’s so critical that we as, as, as increasingly leaders in our healthcare systems that we’re aware of this history because it’s essential to our sustainability.

Alex 27:42

Michael, I have a question for you. I was listening to your Balfour mount talk at McGill, which you did just at the end of January on the 50th anniversary of the launch of the first unit. And you described the importance of healing as a concept within palliative care. And I have to say when I first heard that, I found it jarring and I was reflecting on why did I feel? Why was it? Why did I have that response? And I thought, maybe this is because we’re caring for patients who are at the end of life and so much is falling apart about them. How can the focus be on healing? And then I thought, I think you may have triggered this because you may have mentioned Rachel Remond, who’s been at UCSF and runs the Healers Art program.

We should get her on GeriPal, too. I remember taking her course in medical school, and I remember my dad reading her book Kitchen Table Wisdom and undergoing a sense of spiritual growth towards the end of his life and how that in some ways was a healing. And I thought, boy, you know, this is what Justin was talking about. We’ve gotten away from the roots of palliative care. I was just at the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses association meeting with Eric and Justin in Denver. And I don’t remember seeing the word healing. I mean, maybe it was there. I certainly didn’t go to a lot of sessions, and I may have skipped a few sessions after the GeriPal pub crawl. Actually.

Justin 29:14

Krista Tippet. Krista Tippett, on the first day, was talking about this, and I was like, wow, this connects to what we’re talking about now.

Alex 29:23

I would love to hear, Michael, your argument for the importance of healing in palliative medicine as a concept, a notion, a goal.

Michael 29:30

Well, yeah, Gosh, there’s so many ways I could respond to that. But what might be helpful is, I think it was 2008, in the Journal of Pain and Symptom Management, Balfour Mount, with Pat Boston and Robin Cohen, published a paper called Healing Connections. And I can’t remember the subtitle. You remember, Justin, I’m sure. But it basically, and really quickly, because this, I just, I think, answers your question better than better than otherwise. But they took 20 patients, 21 patients, I think it was 10 of whom were self identified as experiencing existential anguish, as being rating their quality of life as really poor, and 10 of whom were experiencing what they described as a sense of wholeness.

Now, all the demographics were equal across the group. They were all in the final weeks, sometimes month or two, but sometimes days of life. So there wasn’t any difference in the demographics, but there was a huge difference in half the group were pretty miserable and half the group were actually flourishing. And where it’s talking about a sense of completion, of wholeness, of integration, of being at peace. And so this was qualitative research. So they sat down and talked to them and analyzed their conversations. And what it all kind of came down to was the presence or absence of what they called healing connections. If an individual had a sense of connection to themselves, to others, to the phenomenal world through the senses, or to what they called ultimate reality, however that was conceived by the individual, if the individual had a sense of connectedness in any of those areas, it gave them a sense of being part of something greater than their isolated individual self.

And that sense of being part of something bigger and greater and more connected is what they were describing in their own words as feeling a kind of a sense of wholeness. Whereas at the other end of the spectrum were individuals who didn’t have that sense of connection, who were feeling isolated and who were describing, feeling frightened, a lack of meaning, a loss of control and a need to be in control, and a profound sense of unhappiness. I think there’s something. There was a Jungian analyst, Edward Edinger, who, in his book Ego and Archetype, he told a story about a client of his patient of his who was undergoing psychoanalysis. And he was in his 40s, and he died with a massive heart attack. And Edinger went back and looked at the dreams that this man had brought to him in the weeks and months prior to his death. And what he saw in those dreams were images, metaphors of what he described as kind of transpersonal reality. And what I’m getting at is he kind of said what he saw in that patient.

And what he sees is that it’s as though there’s an urgency in the unconscious to communicate that sense of what he called metaphysical reality, but could also that sense of wholeness before we experience biological death. And so I think part of the reason why this is so pertinent in palliative care is, I think, within the psyche, there is this opportunity and this dynamic and this move that if we’re open to it, that if we’re sensitive to it, it’s kind of working its own way.

Eric 33:29

So I got a question then, for both of you. Is Cicely Saunders, unit was a place of healing despite everybody dying. It was a place for healing. What, outside of just prescribing medicines to help with the symptoms? That doesn’t seem like it’s a healing maneuver. It’s a cloaking palliative care maneuver. What do we do? What should we do as nurses, as physicians, as social workers, as chaplains?

Sue 34:01

Can I just say something to your question? I think where the healing takes place is when the family gets involved, when they actually do some of the care. And it brings a closeness that they had not had, or I had patients that would say to me, tell my children to let me go. And then I would sit with all these adult children. They didn’t want to let their mother go because she’d been such an integral part of their life, but she was ready, and it was a matter of them coming to terms with it. And it took just like another day after I had visited with the family, because there were three people. She had 10 children, and there were seven there that we sat and talked together. And Saturday, that was a Friday, Saturday, the other three got to have that conversation. And Sunday morning she died. And I think because everybody was there and involved in it and being able to give back to her because she’d given to them, that’s where healing is.

Justin 35:05

Well, and I think, just to add to that, I think that the, you know, what. What Val and Michael, I believe together, wrote about was about healing was that it’s. It’s an innate potential within us, but that it’s an. You know, it’s an. It’s a relational process that leads to a sense of integrity or transformational growth in a person. And so I think that this is what I find so radical about this idea, is that it’s not, you know, of course, like, from a. From a physiologic perspective, dying is just a series of failures, but we know in caring for people at the end of life and through the course of their serious illness, that there’s something possible there when, you know, all of us know someone who’s come to the end of their life and said, the last year of my life was the best, you know, in the setting of their advanced cancer.

And that’s because something happened in that time that couldn’t have otherwise happened. And part of our work in palliative care is to. Is to enable that process, you know, either whether it’s through the expert control of symptoms or through the work that we do in relating to people in a time where their social relations are entirely disrupted. Right. And we set an example for them about how to relate with others. And I think that’s. That’s what I hear when I hear sue telling this story about this family is what we do when we, you know, kind of fearlessly engage with people at this really difficult time, when they feel. When they’re. When their social worlds are disrupted, which is, you know, it gets back to Cassel’s understanding of suffering.

Michael 36:28

I mean, and what I just like to add to what you’re just saying sue and Justin is, is that, you know, you mentioned the, you know, the inner healer. It’s as though everyone, each of us has an inner healing potential, but it’s also that there is an inner wholeness, there’s an inner completeness. And that part of what healing, you know, at least this is how I conceptualize it and understand it. That part of what that coming into wholeness or coming into healing is somehow, it could be seen as a kind of an awakening of the inner healer, or it could be seen as just resting back into the wholeness that’s already there. And sometimes one just senses that shift in an individual and the impact that that has coming back the other way to the family around them.

They become the healer, they become the wounded healer within their families. And what’s working against that. Yes, it is the pain, yes, it is the shortness of breath, yes, it is the uncertainty. But all of that is preventing that person coming into that sense of wholeness because it’s generating fear and fear is the big culprit. And I think that’s coming back to what we do in palliative care is we really, I think, very effectively through all we do in a very holistic way and in a very effective way. Hopefully we’re lessening the fear and we’re allowing that person to relax and to relax deeply into themselves, where that wholeness is.

Sue 38:09

Yeah, I agree.

Justin 38:11

You know, that, that article that Michael referred to, one of the, you know, one of the things they talk about is the importance of meaning based adaptation to advanced illness that they learned from this. And if you talk to people like Vicki Jackson, you know, Alex, as you and I have recently, about where, in all of the studies that Jennifer Temmel is doing, for instance, where they see the value, really, I think she would say that what, what these studies support is the idea that our ability to support adaptive coping in patients is what really makes the difference. And the question is like, we can think of coping as sort of this sort of clinical construct, but really this is about, you know, how, how that happens, I think is about the relationships that we build with people and the way in which they feel safe, less afraid and through this process. So I think there’s a way of connecting these ideas that are at the very core of our field from, you know, 50 years ago to the, to this modern state of the science and what we’re doing. And I think that’s really exciting if we can, if we can understand that and nurture that connection.

Alex 39:10

I like that. Thank you for Saying that, Justin, because I was just before you spoke, pondering on the disconnect, as a palliative care researcher between the outcomes I see studied in palliative medicine and these larger concepts that are at the heart of why many people went into palliative medicine in the first place, to relieve suffering, to be a healer for patients who are nearing the end of their lives. And it gets at that tension that you spoke, both Michael, you and sue spoke to so eloquently. And I think that has obviously existed since the beginning of our field. And so I appreciate the way that you connected those dots, Justin. And I would say that was partly the frustration with. I’ll just say it. I wasn’t going to say it, but I’m going to say it. With Tippett’s plenary session at the assembly, that many people felt like, this is far too nebulous. You know, I’m not coming away with something concrete that I can use to help the people I’m caring for and their families.

Eric 40:19

What medicine can I give?

Michael 40:22

Yeah, well, you know. You know, Cicely Saunders, she actually, it was in a forward for an earlier book I wrote, Mortally Wounded. She said this. She said, the way care is given can reach the most hidden place, an open space for unexpected development. The way care is given.

Sue 40:43

I agree.

Michael 40:44

And it’s so. In a way, it’s so incredibly simple. But it’s like, you know, just doing what we do with kindness, doing what we do with care, just makes all the difference, can make all the difference, and I think goes a huge way to lessening the fear and to opening that space where healing is possible. You know, another kind of mentor of mine said, you know, we can cure people, we can prevent disease, but we can’t prescribe healing. The most we can do when it comes to healing is to prepare and hold the space where the miraculous may happen.

Justin 41:30

Another piece of the history of our field, which I think is really interesting to ask sue about. So, Stu, I was wondering, you know, a lot of people are not familiar with one of the earliest, one of our earliest drugs in palliative care, which is called Brompton’s Cocktails. Sue, do you remember that?

Sue 41:44

Of course.

Justin 41:45

Do you remember what was in it? Do you remember what was in it?

Sue 41:47

There was morphine. There was some cocaine.

Justin 41:50

Morphine. Cocaine. Chloroform.

Sue 41:54

I didn’t remember chloroform. No, no. Just a simple syrup. And the thing is that you could concentrate that morphine, so it wasn’t a big volume that they had to swallow. Sometimes that was an awkward thing. But, no, that’s one thing that I wanted to say. I put a few notes down of what I wanted to mention, and that was one of them. The Brompton Cocktail. We had a man come in and curled up in pain. He had an esophageal cancer. And we started him on a very 5 milligrams of the morphine liquid. And the next morning when I went to work, I looked over. There he was shading at his sink, standing upright. But he was given it every four hours on a regular basis. And also the right amount. Because if you don’t get the right amount or if you give them too much, then they lose confidence in it and they don’t want to go near it anymore. So it’s very delicate in how you put it all together, but it was wonderful.

Justin 42:51

The reason I say this is because people just think of palliative care is fun because of the GeriPal pub crawl. But at the very beginning of our field is a medicine that includes, you know, morphine or heroin, cocaine, sometimes gin or alcohol and other things. And so, you know, there’s a party from the beginning going on in our.

Eric 43:11

Well, I got a. I got a question about that.

Sue 43:14

Is that heroin?

Eric 43:16

There’s this. You know, I think there is this tension between, like, part Alex even mentioned, like, our goal is relief of suffering. And we have these medicines that can knock people out. But I also hear that there is this almost redemptive quality of the suffering. The things that we go through. There’s ways to heal outside of just cloaking those symptoms. And is there a redemptive quality about this? I’d love to hear your thoughts about that.

Sue 43:51

I think that’s where the relationship stands of just coming and keeping it going. Once you do the intervention, you just don’t leave it at that. You just keep going back to make sure that it’s working. I think that’s what we have to do. I think that’s what was exciting about being in this field, actually.

Eric 44:13

That’s great. Michael, any other thoughts?

Michael 44:17

Well, I’m just. Over the years, I’ve become a little more Buddhist and kind of this kind of sense that we, you know, that there is this sort of wholeness. There is a Buddha nature. There is a completeness that. That is just part, you know, the deepest essence of who we are, the deepest essence of who everyone is, you know, and we’ve called that the innate healing potential. We’ve called that the inner healer. And so, yeah, for me, in some ways, it’s become Simpler over time, Not, I hope, simplistic, but a sense that, yeah, you know, doing really good care with kindness, seeing the power that has to remove fear, to open up space, and then there is this potential that just that kind of can flourish, that can blossom.

Eric 45:11

Real quick question to all three of you. When you think about the future, what are you hoping for for the field of hospice and palliative medicine? Sue, I’m going to start off with you. We don’t have a lot of time, so it has to be quick responses.

Sue 45:23

Yeah, well, I just. I think we got to bring our compassion back. I really do. That’s what’s missing right now in our healthcare system. It’s certainly where I’m living. And when I think of palliative care, it’s the happiest time in my whole life. When I was working with a physician for 91 now, and I asked him recently, I said, how did you feel about palliative care? He said, it was the thing I loved the most in my whole career. And I feel that way. It really is special.

Eric 45:55

Thank you, Sue. Michael?

Michael 45:57

Yeah, I think I would sort of just end by quoting Michael Balint from the Tavistock Clinic in London. Psychoanalyst who says, we are the medicine. We are the medicine. We are the most powerful medicine we give our patients. Just letting that really sink in.

Sue 46:18

Yeah.

Eric 46:19

Thank you, Michael. Justin?

Justin 46:22

Yeah, I would just add that I think for reasons that are demographic as well as important for the sustainability of our field, I hope people who practice palliative care take the time to really understand where we come from, because I think it really. It’s a deep well from which to draw. And. And there’s so much that we can do in being familiar with that that will help us in our work with our patients.

Eric 46:44

Yeah, we’ve got a name we should hear where it came from yeah like.

Alex 46:49

(singing)

Eric 47:44

Sue, Michael, Justin, thanks for joining us on this podcast.

Sue 47:47

Thanks for having me.

Justin 47:48

Thank you so much, you guys.

Michael 47:49

Thank you.

Eric 47:50

And to all of our listeners, thank you for your continued support.

This episode is not CME eligible.