Chapter 15: The Future of Palliative Care

Title

Chapter 15: The Future of Palliative Care

Files

Loading...

Media is loading
 

Description

Dr. Bruera first talks about his dream for the evolution of palliative care. He says he would like to large, centralized and multidisciplinary supportive care services available to all patients at institutions, with care programs tailor made for each individual. He explains why the idea of multi-disciplinary supportive care is controversial for traditionally-trained clinicians. He acknowledges that medicine is far from reaching this dream. Next, Dr. Bruera notes how proud he is of the many individuals he has mentored in the Department. He then talks about the challenges he sees as the field moves forward. First he talks about the danger of palliative care attempting to "be everything to everyone." He explains the importance of staying focused on suffering brought about by cancer and other diseases. Next he talks about the challenge of convincing organized medicine and the healthcare system to embrace palliative care. Next, Dr. Bruera explains how this process is connected to administrative structures in organizations. He also offers his evolutionary schema of how palliative care is accepted after processing through several stages he bases on Elizabeth Kubler-Ross's phases of grief: denial; palli-phobia; palli-lalia (nonsense talk with no action); palli-active. He notes that most of the nation is in the stage of "palli-lalia". Dr. Bruera concludes the interview by saying he is optimistic about the future of palliative care and its acceptance.

Identifier

BrueraE_03_20181105_C15

Publication Date

8-15-2018

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; Definitions, Explanations, Translations; Overview; Understanding Cancer, the History of Science, Cancer Research; The History of Health Care, Patient Care; Offering Care, Compassion, Help; Survivors, Survivorship; Patients, Treatment, Survivors; Human Stories; Post Retirement Activities; Multi-disciplinary Approaches; Personal Background

Transcript

Tacey A. Rosolowsi, PhD:

What is next for you in terms of research and what you would like to do in the department?

Eduardo Bruera, MD:

I think, I personally have decided some time ago, that I will end up my career staying in this field. Many people use, unfortunately—palliative care was never very hard, but some people have used palliative care as a springboard, to become deans of medicine, hospital medical directors, people who have administrative roles. I was never interested in that. I’m only interested in what I’ve been doing all my career and I want to end up doing that. But my dream would be that when you are hit by the hammer of getting a diagnosis of cancer, you are given the opportunity to receive supportive care from the moment you are hit by that hammer. You might be suffering more than someone else, some people are hit by a diagnosis of cancer, they are very pragmatic, they go to Google, they see this is my type of cancer, this is my type of treatment, it will be a disruption in my life for six months and I am going to be okay. Maybe that person doesn’t need me. Other people get that same diagnosis and they are absolutely devastated. They are devastated because they’re different and they just take it in a different way. That person might need me. If the diagnosis for that patient is one that is not likely to be a very positive one, that person probably needs me, even if they don’t know they need me, and as the disease progresses, that person probably needs me. So, my dream would be that we’ll have a big supportive care access available for everybody diagnosed with cancer, and then, that access could differ. In some cases, it might be one or two or three visits and then you will move on with your life, you don’t need us anymore and you are perfect. In other cases, you know where we are, you can get to us at any time. You don’t need to actually make an appointment, just drop in. Drop in, come in and say, hey, I’m not having a good time, can you guys help me? And then we will chase you, we will phone you, we will Facetime you and contact you and see how you are doing, and keep in touch with you. In the process of doing those things, we will do all the necessary research to document that models that work, the models that don’t work, so that we can put that in the literature, so that other people can then take advantage and change the way their hospitals operate. It is my dream that there will never be a hospital that has an Intensive Care Unit, that does not have also, a Palliative Care Unit, that every hospital in the nation --and we’re having nine big hospitals here, all of them with multiple ICUs and not one single PCU. Therefore, Methodist doesn’t have one, Saint Luke’s doesn’t have one, Hermann Hospital doesn’t have one, Texas Children doesn’t have one. So, having a Palliative Care Unit wherever you have an Intensive Care Unit is a personal dream of mine. That nowhere where you see people with serious illnesses as outpatients, you will not also have a Supportive Care Center. So that if you treat cancer, if you treat heart failure, if you treat other diseases that can potentially cause suffering, you will have a center for the human suffering, a center where you can say, our institution doesn’t just treat heart like that one, our institution treats people, and then the Supportive Care Center is where person centered care is expressed. Other institutions will have that Supportive Care Center and everything that happens inside will be our problem. You cannot have people being referred to a pain center, a psychiatrist center, a social worker center, a nutrition center, a fatigue center, this center. Personhood care should be the business of the supportive care team. Those of us working inside will distribute our workload, but we cannot burden that patient, and we should also not burden that oncologist, with deciding which of the services are there. So my dream is that we will have this universal access, these big programs, and that in the process of having them, we’ll do the science to document what works and what doesn’t work, so that other people will take advantage. [00:4028]

Tacey A. Rosolowsi, PhD:

[00400:29] It’s that analog of the multidisciplinary care and the disease centered arm of treatment, and now you’ve got the multidisciplinary arm of the supportive care.

Eduardo Bruera, MD:

Exactly, exactly.

Tacey A. Rosolowsi, PhD:

Yeah, it makes perfect sense.

Eduardo Bruera, MD:

And really, when we think about that, should we have disease specialists? Should there be have palliative care for leukemia, palliative care for breast cancer, palliative care for lung cancer? My answer is that’s really stupid, because it’s about the person, not about the disease. That is assuming that if you get lung cancer, you have a different family, a different way of seeing life, a different way of approaching your suffering and a different way of wiring from your nerves to the periphery, as compared to if you get melanoma or breast cancer. What might be disease specific would be palliative care for extreme anxiety, palliative care for existential distress, palliative care for fatigue, palliative care for pain. That would be specialized. So if you want disease specific, I would say spiritual suffering oriented, grief related to the loss of a child oriented, fatigue oriented, pain oriented. That would be saying the personhood, care is what matters. What we need to do is to, you are going to have disease specific, is the person problem, not the diagnosis, but you know doctors are doctors and they see diseases as the goal, and they have sometimes this a little bit simplistic approach to the suffering component, and they say well suffering is suffering and you just do it that way. My answer to them frequently is that you know—and they frequently say this—think about bone marrow transplantation. What is bone marrow transplantation? I put a needle here, remove a little bit of your bone marrow, put it in the freezer, throw your chemotherapy to levels that are capable of killing an elephant, then ten or twelve days later, I load you up with antibiotics capable of killing every single virus, fungus, and bacteria in the world, do that for two or three weeks, then I take that from the freezer, I thaw it and I inject it back in your and off you go. Anybody can do that. So, of course saying that would be terribly ignorant, because I know that there is a lot of complexity in removing your bone marrow, in freezing it, in giving you the super lethal chemotherapy, in keeping you not infected to death, and then injecting it back to you and helping you go. What happens is there’s very limited understanding of the complexity of human suffering, that what we try to do with these people is very, very complex and requires a certain level of expertise. But a bone marrow transplantation is part of mainstream medicine, while person centered care is not. So those colleagues don’t really understand that there is a certain level of complexity, and so I sympathize with them because they never learned about it. On the other hand, I need to make sure that they understand that some of the way people conceive suffering as so easy. My reply to them is so, if it’s so easy, how come you cannot fix it? If you were unable to fix the cancer and now you’re calling me, so why are you calling me if you can fix that suffering? It’s got to be very easy. And so I never will hold anybody responsible for not having cured the cancer. I know they’ve done their best. I’m an oncologist myself and I know they used the best of their wisdom to help that patient and it didn’t work. But then they need to respect the fact that the suffering is complex and it requires structures and it requires processes to do with suffering. So I am happy to see that there is more awareness than there has been, but we’re still far from getting to what would be my dream. Well, we’re still far from getting there. I don’t know if I’ll see it before I’m gone. I for sure will keep chugging away for another few years, but I think I’m leaving a generation of good people, and the one thing that makes me the proudest is all this new generation of people that I’ve mentored over the years. We have penetrated many organizations, we have people who are in the younger generation, my children, who will basically keep hammering away. So they are not going anywhere, they are very committed, they’re very passionate, and I think that ultimately, person centered care will succeed, not because of what our generation did, but because of what the next generation will end up doing.

Tacey A. Rosolowsi, PhD:

Where do you think the field is going, you know kind of what are the big—are there intellectual challenges or practical research challenges? What’s holding things back, what’s going to make things move?

Eduardo Bruera, MD:

I think the big challenge of person-centered care is not to dislocate it too much into becoming everything to everybody. So, we are fantastic with somebody who is going to die. We’re good with somebody who is ill and is not dying yet. We’re not that good with somebody who --we don’t know how well we can be with somebody who is a chronic survivor of cancer. They may have a significant burden of suffering, but how do we address that? So, I think the intellectual challenge in our field is that we cannot be everything to everybody forever. There are some of us who have had a very difficult existence, and they do not have cancer and they do not have any disease. And the same as we told people in the developing countries many years ago, do what you do well, do it the best you can, don’t try to change society, don’t try to change the world, because then you’re going to get burned out, and then you’re going to get frustrated. If we embrace every aspect of suffering associated with famine, with political neglect, with personality issues and so on, we will become burnt out. So the challenge is to stay focused on the suffering that is brought to you by cancer or by other medical diseases. I can see that many people, particularly armchair type of lecturers who don’t really see patients, I find that patients are very important. This weekend, I saw twenty-two patients, and that gives me a strong—or twenty-three patients, and that gives me a strong reality sense of what can be done and what cannot be done, by being on the field and delivering the care myself. But I think many people have this idealistic view that palliative and supportive care will resolve human suffering. That is a big problem. Human suffering is ever going to be there. So I think the challenges for the future are to make sure that we stay focused on what we might call unnecessary human suffering, but not to put ourselves as the people who can achieve what is not possible to be achieved. The second, to me, big, big challenge for palliative care and supportive care, is to be finally embraced by what we might call organized medicine and healthcare. It takes big roles, that there has to be professorships in supportive and palliative care and whole person care. It cannot be seen as, in our case, not cancer medicine, not even medical oncology, supportive care is now there. They will have to have major administrative roles in organizations, so that the center, the patient-centered care, sits with the president and with the dean, and with the people who make decisions, as a very important role of what we are. Only by having those changes in the structures in power in medicine, in academia, will then the voice of those who are interested in the patient experience get them the space, the positions, the resources they need to deliver care. As long as they remain as a small part of the operation on the side, it’s nobody’s fault. It’s nobody’s fault, but when the big names are sitting at the table distributing space and positions and philanthropy, that group is never there, and so it doesn’t have a voice. It cannot say, me too. It cannot say why don’t you add this component. The same thing happens in medical schools and in nursing schools. The curriculum discussion about how much time they spend in cardiology or nephrology or family medicine, there is no one representing person-centered care. The problem then is that they will get the crumbs. It will trickle down into something down the line, but if that person is not any less than family medicine, internal medicine, cardiology, is sitting there and arguing with a dean, we need the time of the students, we need them to learn about this, and maybe holding retractors another four hours is not going to educate them as much as learning about person suffering. But if we do not have the people in those levels, if we do not have the people in those decision making levels, then we’re not going to change the culture, the culture will remain what we call pallilalia, that is where it is right now. Many years ago, I was asked to develop some paper and I did something that was developing the level of development of palliative care, understanding in society or in medical schools and in hospitals. I did something on the Kubler-Ross type of acceptance of death, so I said that there were four stages. One of them was denial, and some institutions might be now in denial. Saint Luke’s is in denial. They feel that they don’t need to address suffering. Their patients are taken care of by hospice and there’s not much suffering in that place. And then the way you fight denial is you go and ask a hundred people in that place how happy are you that you’re dying, how well is your suffering treated, and I’m sure there’s no suffering in you isn’t it? So, denial is replaced with palliphobia, and palliphobia is basically panic whenever the palliative word is pronounced, because they’re afraid that you’re going to scare the patients away, that they’re not going to accept your treatments, that it will show that people might die of cancer or heart failure, and also that you’re competing. So palliphobia occurs among, of course, deans of medicine and hospital presidents, but also among people who feel threatened; social workers, doctors, nurses, other people who are doing their little thing and they are afraid that palliative care might infringe on it. The way you alleviate the palliphobia, mostly on the leaders, is you don’t go and talk. What you do is you do what we did, you treat patients on the underground. The third stage, where a lot of the world is right now, is pallilalia, that will be repetitive nonsense talking about palliative without doing anything about it. This is so important, let’s to a study to demonstrate it, we should do something about it, but not changing the structures to open the range and allow them in. That’s why there is so much burnout, because teams are finding that now, contrary to the palliphobia stage, when they were not getting those patients referred to them or they were not getting pressure, they are getting pressure but they’re not getting resources. So finally, after the pallilalia, you get the final stage, that would be palliactive, and palliactive means basically, you set up the structures and you put the money, and as we say in Texas, money talks and BS walks, and that palliactive needs to not. Need that institutions reflect on where in the administrative structure of the institution, be it the hospital, the faculty of medicine, the cancer center, is person centered care necessary, and that they give it the resources it needs. So, I think it’s starting to happen in some areas. Most of the nation is still in the pallilalia stage, some areas of the nation are palliphobic, and regrettably, some areas are still in denial. So, I hope that by the time I’m gone, most of the nation will be palliactive. I had a lot of fun doing what I’ve done for all these years, and I would not change it for anything else. I know it was much harder in some areas and certainly, money was much worse than what was in other areas. My wife bought me a bottle of champagne, the first time she counted and said—and I said, “Why are you doing that?” She said, “Oh, this is the first time you’ve donated a million dollars to your hospital.” So the time she calculated that, as compared to the other medical oncologists, I had donated a million dollars to the hospital. She said, here, let’s celebrate your first philanthropic donation of a million dollars, because if I had pushed chemo, my income would have been much better than doing palliative care. So, the reality is some things are easier, some things are more difficult. I personally would not change it. I think it was nice and I am very optimistic that the future looks good for us, for palliative care, for all the people doing person-centered care, I think we are over the hump and things look much better. Of course, I’m not going to be here too many years to enjoy it, but I am so happy that the people who are getting into the field now, are going to have a much better life, a much better professional life than we did.

Tacey A. Rosolowsi, PhD:

Sure, sure. Do you have plans for retirement?

Eduardo Bruera, MD:

At some point I will. I don’t know, maybe six, seven years more and then I’m going to be gone, I don’t think I’m going to be staying in this forever, my wife would not allow me. Basically, I think that’s the plan.

Tacey A. Rosolowsi, PhD:

Well we are at two-thirty and I know you’re very, very busy, so I’ll just ask you if there’s anything else you would like to add at this point.

Eduardo Bruera, MD:

No. First of all, thank you very much for having taken the time and for having decided to cover this. I’ve never discussed all the things I discussed with you before, so I think it’s all new.

Tacey A. Rosolowsi, PhD:

Oh, good.

Eduardo Bruera, MD:

I hope somebody decides to take advantage, because I’m certainly not one to write my memoirs in any way, so this is the closest thing they’re ever going to see to that.

Tacey A. Rosolowsi, PhD:

Well, I think it’s not a bad memoir then. Well, it was really a pleasure talking to you.

Eduardo Bruera, MD:

Wonderful.

Tacey A. Rosolowsi, PhD:

This is really interesting conversation.

Eduardo Bruera, MD:

Thank you so much, it was wonderful.

Tacey A. Rosolowsi, PhD:

Thank you for your time, Dr. Bruera.

Eduardo Bruera, MD:

Thank you.

Tacey A. Rosolowsi, PhD:

And I just want to say for the record, I am turning off the recorder at two thirty-two.

Conditions Governing Access

Open

Chapter 15: The Future of Palliative Care

Share

COinS