Chapter 10: Palliative and Supportive Care in a Changing Institution

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Chapter 10: Palliative and Supportive Care in a Changing Institution

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In this chapter, Dr. Bruera explores how attitudes toward palliative care reflect larger institutional priorities and focus on cancer. He begins by setting the institution's lack of support for palliative care despite its success, in context of what this says about institutions, the educational backgrounds of leadership, and the traditional disease-focus of cancer centers and other medical practices. He notes that Houston lags behind other cities in shifting this focus. Dr. Bruera admits he is disappointed that a person-focus has not 'exploded' over the course of his career at MD Anderson and that the institution has remained very disease focused. However he is hopeful, given some statements by new president, Peter Pisters, that this may be about to change and that Dr. Pisters may be shifting the focus away from cancer and the history of cancer to the person who has cancer. Next, Dr. Bruera responds to a question about institutional changes under fourth president, Ronald DePinho and how they effected the view of clinical practice. Dr. Bruera responds that he saw no real change under Dr. DePinho, as the institution even under John Mendelsohn was very disease focused rather than person focused. He notes again that he has seen a change over the past 6 months, under Peter Pisters, in that palliative care is viewed as more mainstream and essential to treatment. He notes that Palliative Care has saved the institution millions in costs. He notes the work of Ben Nelson in using positive financial data to generate a more up to date view that palliative care and support services are not simply 'touchy feely' but useful for a vitally functioning institution.

Identifier

BrueraE_02_20180813_C10

Publication Date

8-13-2018

Publisher

The Making Cancer History® Voices Oral History Collection, The University of Texas MD Anderson Cancer Center

City

Houston, Texas

Topics Covered

The Interview Subject's Story - Overview; Leadership; On Leadership; Overview; MD Anderson Culture; The Researcher; Professional Practice; The Professional at Work; MD Anderson Culture; Working Environment; Collaborations; Professional Values, Ethics, Purpose; Growth and/or Change; Institutional Politics; Institutional Mission and Values

Transcript

Tacey A. Rosolowsi, PhD:

Now I’m curious if you’ve reflected at all on what that says about leadership, and kind of the way leadership sees an institution or makes those— [phone rings] Shall I pause the recorder?

Eduardo Bruera, MD:

No that’s fine, that’s fine, it’s my wife so it is no problem.

Tacey A. Rosolowsi, PhD:

Just a reflection on what that says about institutions and leadership, that something like that can happen.

Eduardo Bruera, MD:

I think it tells us that institutions and leadership in medicine are disease-oriented, not person-oriented. I never hold it against the institutions or the leaders, that they make those decisions about what I do. It would be easy for me to personalize and to say that there are good people and bad people, but that would be kind of naïve. These people went to medical school with me, these people took training, these people are trying to do the best within the tools of what they know. That’s a heart institute, this is a cancer center, people are disease-oriented, and then a group that is person-oriented had no real fit. It was not seen as to fit. None of these colleagues, none of the ones that are my age or even twenty years younger, ever learned about palliative care. They did not learn in medical school, they did not learn in residency, they did not learn in fellowship, and so basically, they have a natural kind of resistance. They’re a bit cynical about anything that they haven’t learned. They may have thought that we were quacks. They may have thought that we had nothing to offer. In fact, many people who are in a leadership position at the institution right now have said to me that there’s nothing we do that is special and so on, even though there are now thousands of papers, more than two thousand by our group, but hundreds and hundreds of papers in the literature every day that clearly show that there is a body of knowledge.

Tacey A. Rosolowsi, PhD:

Interesting.

Eduardo Bruera, MD:

But since people have not been educated on it and they arrive into a position of leadership and the whole administrative structure is disease-oriented. A person-oriented program doesn’t fit. So the two medical schools in Houston have no department of supportive and palliative care. The Methodist Hospital, as big as you see it, only has four doctors. Saint Luke’s doesn’t have one doctor, and the UT Health Sciences Building has three or four doctors only. Memorial Hermann does better. It has ten or eleven. Houston particularly, has been a little bit behind, and the understanding that personal care is important has not always been there. So I think that we owe our existence here, I owe my life, my career, to first, the vision of Neil MacDonald who, in the ‘80s, when this was thought to be almost esoteric things, he saw that there was an opportunity for this, for patients and families. Upon my arrival here, it was John Mendelsohn resuscitating a program that was moribund by people not knowing what we were doing here and so on. And picking us up again and then saying, you know what, I’m going to put you guys here and I’m going to support you. And then Dr. Hong, who basically took us and said, I’m not a hundred percent sure what you guys do every day, but show me the data, show me your achievements, show me the numbers, and then I will fairly react to that and put the resources. So, really, it’s not surprising to me that this area received very, very little attention. It is a little bit disappointing to me, that as I’m getting to the last years of my career, I have not seen yet, the explosion of person interest in medicine. I think it’s getting better. I think it’s improving every year. And for the first time in the history of this institution, I heard a president say that patients die of cancer. So, Dr. Pisters, for the first time in the history of this institution, mentioned that end of life care is one of the priorities. I was incredibly thrilled to hear him say that, I was emotionally affected. It took me to a very emotional level, to hear a president of MD Anderson saying that end of life care was a priority. So it’s a tribute to him and it’s a tribute to Dr. Hong, who have both said that this is important. But I also heard him say something that is striking: that is MD Anderson is person-focused, patient-focused cancer care. This sounds naïve. But for the first time, I have heard a leader say that we’re focused on the person, we’re focused on the patient, we’re not focused on your cancer. We’re not just focusing on the history of cancer or anything, we’re focused on the person. It’s great to see that, I am not very surprised that it took so long for the person to be put in the center of the action. In a sense, hopefully, I’m going to end up my career seeing that --looking at the personal suffering discipline,,and measuring it, and treating it and supporting it, will finally make it to mainstream medicine, will finally become an important part, and that with doctors and advanced practice providers will feel proud of the patient being the center of what we’re saying. Because the patient being the center has been given a tremendous amount of talk. But the same as we were discussing before about leadership, it’s not what you say it’s what you do, are the actions that depict it. Now, in the case of our current leadership, who have been here for six months, the fact that they make these very strong statements has been unprecedented, it’s never happened before. I’m not sure what people who have been so disease-oriented feel about this, they might not like it. From what I know, they might say, where is this taking our institution? I personally believe, as an oncologist who has been in this all my life, I believe that this is taking an institution to greatness. This is taking an institution to making Texans proud, and to make Americans proud that you can do both: that you can treat a cancer, but you can treat it in an environment where the person is honored, where the person is cherished and embraced, and you don’t have to do one or the other, that you can balance both. So I think that to me, this is a call for greatness.

Tacey A. Rosolowsi, PhD:

That’s very inspiring. I’m also thinking about how this shift in attention that Dr. Pisters is exemplifying, in really striking ways, I mean it is amazing, some of the statements that he makes and the way he’s presenting himself as a leader, to everyone within the institution. He was obviously a stark contrast to Dr. DePinho and the research focus that Dr. DePinho brought, and I mean that certainly sent the institution into a very turbulent time. There were a lot of reflections on what was happening to MD Anderson culture and focus during that time. I’m wondering what your read was on that, I mean Dr. DePinho bringing in a very specific vision for how research might be conducted. But it began to have an impact, in some people’s minds, on that balance between research and clinical work. What’s your impression on what happened during those years?

Eduardo Bruera, MD:

You know, my impression is since 1999, including all the Mendelsohn years and all the DePinho years, MD Anderson was a very, very strongly disease-oriented institution. MD Anderson was not a person-oriented institution, and so nobody said that you had to be bad to patients, but nobody made a lot of emphasis on the interdisciplinary assessment of suffering and management and so on. So in a sense, I’m not sure that there was such an enormous change in the focus. From our perspective, we were kind of used to the fact that we were underground and that we were going to remain in that role, but that was, in a sense what happened also in other institutions in the nation. And so basically we considered ourselves lucky to get some support at the local level, and we never intended and we don’t believe it’s necessary, for us to ever be a prime program. We are what we do and we serve the patients and families, the primary teams, so we did not sense, we certainly did not sense that we were interesting to the institution, or at least to the senior leadership. But you know, we were very happy with the fact that the people who are actually seeing the patients and doing the clinical care, really found us very useful. And so that was what I feel kept us going and kept us being useful, the fact that the people working at the trench greatly valued our presence there. We wish we could have done more, because we didn’t have the resources to be able to do as much as we could do for those people who are sending us patients, and we still have a deficit in that area, but that was very useful for us. The change into becoming now mainstream --and I’m not saying us, myself, but what we do becoming mainstream-- has been the last six months, or I would say the last four or five months, in which the institution finally, in the last nineteen years I’ve been here, we’ve started hearing that what we do might end up being cool at the end, that being the nerds in the front of the bus. We also don’t want to go to the back of the bus and be the naughty people, but we would like to be right in the middle, and I think it looks like that’s where we’re heading.

Tacey A. Rosolowsi, PhD:

What are some of the other signs you’re picking up, that there’s that sea change within the institution? There’s the explicit comments that Dr. Pisters makes and Dr. Hong. Are there other kind of reads that you’re getting?

Eduardo Bruera, MD:

I think it’s a little bit early to see if that’s, what are the changes are going to happen, but I sense that the patient is starting to be emphasized much more than procedures, practices and the research. They’re not incompatible. Actually, I think in a place where patients are taking care of with great compassion and with great care, I think research becomes much easier, so I think it’s not one or the other. I think that what we do actually is financially positive for any institution. We generate tens of millions of dollars every year in saved costs for things that insurance will not pay, that might be done; unnecessary MRIs, chemo, ICU, that cause sometimes patients to be in more discomfort and the insurance won’t pay. So, the financial data have been around for many years, but now I think it’s finally taking advantage of and the institution is seeing this as something that is worth it. For a long time, the feeling was that investing on us was a loss of money. That was a wrong concept, based on a very historical concept of the ‘80s, that is if you do more things, you bill for more things and you bring more money in. But that’s not always true, because if you do more things, bill more things, but only 20 percent of what you do gets paid, you actually are a big liability. There were many, many institutional historical issues with some targeted therapies that never got paid, with implantable pain pumps that did not get paid, with a lot of things that the institution was thinking that doing was good procedure, was actually a loss of money. That old concept fortunately has been replaced, and I think Ben Nelson has to be credited with having had a much more complex concept of what is financially or economically advantageous and what isn’t. He has clearly the idea that if you happen to be a program that avoids non-reimbursable costs, you are a great asset to an institution, and so that helped us because it was impossible to sustain that investing in whole patient care was a loss of money. It suddenly became that investing was wise, was not a touchy-feely decision with poor financial discipline. It was actually a financially wise decision, but it took financial leadership to be able to say would you guys—it’s okay, what you guys are doing is okay. You don’t need someone to come and bill a lot of money, only to find that only half of that is reimbursed. You guys actually make that person’s job feasible, because you guys, when that person is going to do one more of those and you tell the patient no, that’s okay let’s go home, that’s it. Then that person doesn’t do that, and then the institution doesn’t lose the money.

Tacey A. Rosolowsi, PhD:

And that individual who is doing the prescribing and the other side of the care can actually use their resources of time for another patient that can benefit better from it.

Eduardo Bruera, MD:

Exactly. Especially in a place like MD Anderson, where the patients are not—it’s not like we lack patients. We actually don’t have enough space to see enough patients, so you’re absolutely correct. What you are saying is perfectly right: is you can invest your skills and your talent on someone who really has a big chance to benefit.

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Chapter 10: Palliative and Supportive Care in a Changing Institution

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