Chapter 03: Working "On the Fringe": Establishing Palliative Care as a New Area of Service
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Description
In this chapter, Dr. Bruera talks about his work at the Cross Cancer Institute in Edmonton, Canada. He talks about Dr. Neil MacDonald, the Institute Director, who brought him in on a fellowship to begin to establish palliative care.1 He explains that Dr. MacDonald wanted to put patient experience at the center of the Institute's services. He then describes the situation on the ground with attention to patient experience and how, through surveys and research, he and a team began to establish evidence based approaches for addressing pain and other dimensions of the cancer experience. He also talks about the pushback against these efforts and how publications documenting evidence were effective in building acceptance.
Next, Dr. Bruera discusses why it has taken so long to develop the 'fringe area' of palliative care and to build acceptance for it. He then discusses his team's most significant accomplishments during his 15 years at the Cross Cancer Institute. He talks about the development of the Edmonton Injector for delivery of pain medication, the discovery of how effective it is to shift a patient's pain medications, the discovering of methadone's effectiveness as a pain medication. He also talks about the value of discovering that team work is the best way to deliver care.
Identifier
BrueraE_01_20180806_C03
Publication Date
8-6-2018
Publisher
The Making Cancer History® Voices Oral History Collection, The University of Texas MD Anderson Cancer Center
City
Houston, Texas
Interview Session
Eduardo Bruera, MD, FAAHPM, Oral History Interview, August 06, 2018
Topics Covered
The Interview Subject's Story - Professional Path; Overview; The Researcher; Survivors, Survivorship; Patients, Treatment, Survivors; Discovery and Success; Leadership; On Leadership; Mentoring; On Mentoring; Understanding Cancer, the History of Science, Cancer Research; The History of Health Care, Patient Care; Inspirations to Practice Science/Medicine; Influences from People and Life Experiences; Professional Values, Ethics, Purpose; The Researcher; Professional Practice; The Professional at Work
Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.
Disciplines
History of Science, Technology, and Medicine | Oncology | Oral History
Transcript
Tacey A. Rosolowsi, PhD:
So let me ask you, was there—this was in the mid-’80s, so were people talking about palliative care, was that the language at the time?
Eduardo Bruera, MD:
Not yet. The idea was, there was the beginning of the British hospice movement, and then I remember that there was an old Italian professor called Vittorio Ventafridda, who came once to Buenos Aires, to give a talk about all this area. Then a guy that then I was able to meet and befriend, a wonderful guy named Balfour Mount from Canada, had coined the name “palliative care.” That was the treatment of the suffering of the human being that was going to die of a disease. This guy, Vittorio Ventafridda, came to our city and I asked for another young resident to cover for my patients and I went downtown to the university, where he was lecturing, and he was giving --in a big conference hall, it was frozen, there was not even heating there. It was very cold and a winter day. He went out there to give the talk, and there were two or three people only to listen to him. Not even the people who invited him were listening to him. It was horrible. He stood up there, and there were probably three of us listening, and he gave the most extraordinary lecture about what this was all about and what could be done about that. I got out of that place saying, this is what I want to do, this is exactly what I want to do. I want to deal with the suffering of these patients, and we’re doing it within cancer and I want to focus on this. That was very good for me, because we’re talking at a time where social media did not exist, where we had no Internet, and where people had to learn from any sources possible, to gain information, so personal visits were important and lectures were important, more important than now. But it also taught me something that I kept with me all my life. That is when you’re going to give a talk, you never know who’s going to be listening, that you can really have an impact on, so I always did what he did, what this guy, Ventafridda did; that is whenever I am giving a talk in front of five thousand or five people, I will always put the same passion and energy, because you never know who’s there, who can really be impacted by it and go out there and make a contribution.
Tacey A. Rosolowsi, PhD:
It’s kind of making me wonder who are those other two people who showed up, because maybe they went off and did inspired things too.
Eduardo Bruera, MD:
Yes. Maybe that’s true, absolutely.
Tacey A. Rosolowsi, PhD:
I mean that was a pretty self-selected group that showed up.
Eduardo Bruera, MD:
Exactly, so to go into a frozen auditorium, exactly, you’re absolutely right.
Tacey A. Rosolowsi, PhD:
Yeah, no, that’s an amazing story. I mean how telling, about not being mainstream at that time.
Eduardo Bruera, MD:
Yeah, it was a real fringe work, and I have to say that it remained like that for many, many, many years. So, entering, I did not have any idea. My dad tried to warn me a little bit, that medicine is not forgiving for people who start kind of areas that are a bit in the fringe, and I was not aware of what he really said, and my first boss in Canada, who was the one who basically, only of the fifty-two CVs I sent around. Only two actually responded. One of them was in [Lyon?], France, to do something related to phase one chemotherapy, so probably the person did not read very well, what I said in my letter. The other one was in Edmonton, in Canada. This guy Neal MacDonald responded and said, you know I’m the director of the cancer center, I’m very interested in this, I haven’t done it, but why don’t you come down and see what we can do, come here for a year or two, and I will allow you to learn this area, I will help you in any way I can. So basically there we went, with my family. We moved up to Edmonton and what was supposed to be one year became fifteen. This is one of the handwritten letters I have from him, when I left to come here.
Tacey A. Rosolowsi, PhD:
And his name again?
Eduardo Bruera, MD:
Neil MacDonald, with M-a-c. He’s retired now, but he was instrumental in teaching me many, many things, and one of the things he said is, “Eduardo, administrative arrangements are important for anything in medicine,” and I was trying to think about what does it mean, administrative arrangements are important, and I was saying oh yeah, yeah, yeah, and I didn’t understand, I didn’t care about that, I was so flustered. With the years, I understood that in medicine, it’s all about administrative arrangements, it’s all about departments, divisions, organizational arrangements and so on, and when those administrative arrangements do not exist, life is not easy. All the decision making and the power goes to the administrative arrangements. So at that time, going into an area that was a little bit of the fringe, was complex because you could not fit into the system. You could not fit easily into divisions, into departments, into hospitals. So the benchmarks that people used to measure achievement and productivity were always not measuring what we did. So, we were the ugly ducklings consistently, because the system had not evolved and you could not get a specialty in this area because there was not one. You could not have divisions or departments and you could not have teaching. So the creation of this area was more complex than other areas.
Tacey A. Rosolowsi, PhD:
You were doing it, you were doing the creating.
Eduardo Bruera, MD:
In a sense we were. A small group of people around were trying to navigate this world to make this happen.
Tacey A. Rosolowsi, PhD:
Now let me just make sure I get these things on the record, because I hadn’t seen—how did this work, the movement to Canada? So, you were a clinical fellow, research fellow, at the Cross Cancer Institute, at the University of Alberta, in Canada, from ’85 to ’87.
Eduardo Bruera, MD:
Yes. From ’84 to ’87.
Tacey A. Rosolowsi, PhD:
From ’84 to ’87. Were you doing what was effectively exploring palliative care at that time?
Eduardo Bruera, MD:
Yes.
Tacey A. Rosolowsi, PhD:
You were, okay. Now so was that where Dr. MacDonald was?
Eduardo Bruera, MD:
Yes. He was the director there.
Tacey A. Rosolowsi, PhD:
Okay. So tell me, what were you doing, I mean how were you starting to explore this area?
Eduardo Bruera, MD:
Well, we opened an outpatient pain and symptom control clinic that had not existed before, and it was kind of a revolutionary thing. We were seeing in consultations, some of the inpatients in the hospital, and I was doing research. I was trying to do research on how to treat symptoms, and well being and so on. Having Dr. MacDonald being the director of the cancer center, he basically got my back, because other people might see what I did as fringe, but they needed the director if you wanted to have new positions, new beds or something like that. So he would basically say okay, that’s fine, I understand you need this, you need that, but why don’t you send Eduardo some patients, or why don’t you listen to Eduardo when he says this or that.
Tacey A. Rosolowsi, PhD:
Always good to have friends in high places.
Eduardo Bruera, MD:
Exactly.
Tacey A. Rosolowsi, PhD:
Why do you think he was so interested in this?
Eduardo Bruera, MD:
Well, I think Neil was a visionary. He saw that a cancer center was not really worth its name if it was not a center for cancer patients, not just for cancers. He really was concerned about the patient experience at a time when nobody spoke about the patient experience. So I think he felt that we had to put the patient at the center, and the cancer that the patient brought was secondary, the most important thing was the patient. And so he basically thought that I might help do that, and we also had to answer questions.
Tacey A. Rosolowsi, PhD:
I would love to know the thrill he got opening your letter, thinking oh my gosh, here’s a person who can come and help me do this.
Eduardo Bruera, MD:
Well, I’m not sure if he was completely sure that I could do it, but I think he probably felt that he could guide me, and that’s what he did. He basically put me in the right direction and basically moved me to one side or the other when it was necessary. We had a very successful interaction because, well first of all, I never got in trouble, fortunately. I just did things reasonably the way he wanted. Also, I think we got into a stage in which so little was known, that we started making contributions and they started to become noticed. I just came back from the fiftieth anniversary of the Cross Center Institute, they had a little party in Edmonton about a month ago, and there was a good recollection of the contribution that the palliative care team did to the cancer center, because it was really pioneer work. But as usual, pioneer work can only exist in places where the senior leader is able to make space and to support the people doing that pioneer work. In many, many other areas there were efforts, but unfortunately they never took off or the people moved back to their background specialties and so on.
Tacey A. Rosolowsi, PhD:
It’s tough.
Eduardo Bruera, MD:
In my case it would have been going back to treating cancers, to doing medical oncology.
Tacey A. Rosolowsi, PhD:
You had started to talk about some of the landmark things that you did at Cross, and then I interrupted you with this sort of side thing on Dr. MacDonald. But continue with that story. So you put in the pain clinic, you started seeing patients. What were some of the other kind of innovative things you were starting to do to form this form of practice?
Eduardo Bruera, MD:
Well the first thing we established is that nobody was asking the patients how they felt, and there were no real tools that could be used clinically, very rapidly, very simply. So we put together, from zero to ten, a number of little questions from pain, nausea, anxiety, and so on, and we started asking the patients how they felt, and we started collecting that information and saying this is useful because the patient can tell us how he or she feels and this can become part of the permanent medical record, and so we can now make it one of the reasons why we treat these patients. That was called that Edmonton Symptom Assessment System, the ESAS. The ESAS is currently being used in most palliative care and cancer centers around the world, including MD Anderson, we use it here. So very simply, people go to the ESAS but people don’t remember that ESAS means Edmonton Symptom Assessment Scale, that is because we developed it in Edmonton.
Tacey A. Rosolowsi, PhD:
Now at the time, was there some pushback against making this part of the patient’s permanent medical history?
Eduardo Bruera, MD:
Oh, there was huge pushback.
Tacey A. Rosolowsi, PhD:
Was there?
Eduardo Bruera, MD:
Enormous pushback.
Tacey A. Rosolowsi, PhD:
Why so?
Eduardo Bruera, MD:
First, because it was felt that patients could not really measure well their symptoms. That patients were not that good at being able to tell us what their experience is. Second, there were concerns that we were oversimplifying the complexity of the problems, and third, there was a concern that there might be liability issues. If you come and tell me that your pain is eight, your nausea is eight, your fatigue is eight, and your depression is eight, and I don’t do much about it, would you then sue me about not having addressed your suffering, as compared to not having any record of it and then basically then if there is no record it didn’t happen.
Tacey A. Rosolowsi, PhD:
Much better not to know. [laughs]
Eduardo Bruera, MD:
So all of those had to be redirected and we had to do an awful lot of research and publications, to reassure the community and our colleagues. We found some things that were quite extraordinary about that, like patients repeat the way they score their symptoms over time. Then there are patterns from people who score everything ten or who score one ten and the rest like zero, and that patients are able to tolerate us failing to control their symptoms up to a level of three. So it’s not that our patients expect their symptoms to go to zero, they’re quite happy if their symptoms go to three. So, we learned an awful lot and we—I think slowly, it became more accepted that this was appropriate. But we’re talking about ’80s here, and there’s been only a drive to put patient reported outcomes as a major component in healthcare in the last three or four years.
Tacey A. Rosolowsi, PhD:
Really?
Eduardo Bruera, MD:
Really, it has been a very long process, and partially, I think why has it taken so long to develop palliative care and all the symptoms and all the things we did, well it is because of what my dad and Neil MacDonald warned me: that is when you’re on the fringe, things get very difficult. Meanwhile, back at the ranch, medical oncology as a specialty is younger than palliative care, critical care medicine is younger, emergency medicine is younger, but they all are mainstream and fully organized and fully funded, and there’s big congresses and everything else, and it was because they were mainstream medicine developments. The fringe movements have more difficulty getting adopted. So it took a long time for patient-centered care to become mainstream.
Tacey A. Rosolowsi, PhD:
What were some of your own kind of personal high points during those fifteen years at Cross?
Eduardo Bruera, MD:
To me it was the development of new things. There were two things. One of them is findings. We found that we could put a little needle under the skin and give medications, and so we created something that was called the Edmonton Injector, that is used in many, many countries around the world, because it’s so cheap. It costs nothing to give medications under the skin. We learned about opiate rotation, changing from one opiate to another when the patient did not do well. At that time, before, there was the belief that you always kept the painkiller higher and higher and higher. We learned that by changing from one painkiller to the other, patients tolerated their medications so much better. We learned that methadone could be used as a painkiller, and we started using it. We learned that methylphenidate could be used when people—as Ritalin-- could be used when people were very sleepy from the painkiller, and it woke them up and allowed them to function well. So, we did a number of discoveries that are still fully in practice today and to us, that really gave us a sense of hope and a sense that we could do little baby steps and people would feel better. That, to me was very important, that we were able to pitch in to the way patients were treated. We never copyrighted anything, a hundred percent of what we did was always for free, for anybody in the world to use, so the Edmonton Injector was used around the world for free, by anybody.
Tacey A. Rosolowsi, PhD:
The communist in you coming out again. [both laugh]
Eduardo Bruera, MD:
I guess that was again, back there. But the ESAS is also available for anybody who wants to download it, and we felt that that was part of the fun, to see that people could pick it up and start doing it tomorrow. So, we had all the designs and everything published in the common domain, so anybody could use it, and our drugs that we developed were all cheap drugs that could be used anywhere. So we had the goals of really trying to impact people in other places, and that to me was very enjoyable, was the real fun. The second thing that I found particularly attractive and fun was that we discovered the value of teamwork, that the patient was not helped by seeing the doctor but was helped a lot when a team came together; the physician, the nurse, the pharmacist, the counselor all worked together, also the same picture, all contributed to each other, and then everybody’s day got shorter, got more fun, because we were operating as a team. That is the way we still work today at MD Anderson. So a lot of the things that I was able to bring here in 1999, were the result of what we had been doing for fifteen years in Edmonton, that then, I think was able to move them now, into a completely different stage, into now, the biggest cancer center in the world, but the fifteen years of learning how to do it in Edmonton were instrumental.
Tacey A. Rosolowsi, PhD:
Sure. Now, who are some of the other key people you worked with, because you, over and over you say we, I mean you were a team. Who were the other folks on your team in general, in Cross?
Eduardo Bruera, MD:
Well, in addition to Neil MacDonald was my boss, then I was lucky to start getting a series of colleagues that came along and stayed. The first was Robin Fainsinger, who was my first fellow, who was a real true sacrificial lamb out there, because I had never trained anybody in my life and he agreed to be my fellow at moments when it was quite dubious, the outcome of everything we were doing. He became, of course, the leader there and he became a close friend for many years, and he’s still there in Edmonton. And then we got more people joining us from different domains. Of course at that time there was no specialty, so they came from oncology, from family medicine, and we had a group of people that was really wonderful, because we had physicians who came to spend a year with us and then stayed longer, and they moved on into other areas of Canada. There was a time in which twelve of the—there were sixteen faculties of medicine in Canada and twelve of them had palliative care programs, and in almost all of them, we had either leaders or major [provosts?] that had worked in Edmonton.
Tacey A. Rosolowsi, PhD:
Wow.
Eduardo Bruera, MD:
So we had some impact on the diaspora that moved on to work in different places and make a contribution in their areas. It was fun to work with them, but I have to say that it’s almost as fun to see them move on and use the principles and have those principles work where they went, because in a sense, their ability to do things, they are validated what we were doing back home. It showed that our model was not just a model that could be done in Edmonton, but it could be done in many other places.
Recommended Citation
Bruera, Eduardo MD, FAAHPM and Rosolowski, Tacey A. PhD, "Chapter 03: Working "On the Fringe": Establishing Palliative Care as a New Area of Service" (2018). Interview Chapters. 498.
https://openworks.mdanderson.org/mchv_interviewchapters/498
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