Chapter 14: Committee Work, Care Guidelines, and ASCO Acceptance of Palliative Care

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Chapter 14: Committee Work, Care Guidelines, and ASCO Acceptance of Palliative Care

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Description

Dr. Bruera begins this chapter by talking about his involvement in the WHO's Cancer Pain Management Committee. He describes the challenges and limitations of working with an intergovernmental organization, then talks about the committee's work in developing guidelines for both cancer pain management and palliative care, the latter expanding the scope of guidelines to other diseases. Dr. Bruera notes that palliative care was 'born out of' cancer suffering, and the expansion of the guidelines underscores a focus on 'personhood care' rather than disease based care. He then discusses work on the EAPC [European Palliative Care Committee]. Dr. Bruera then discusses the importance of the Palliative Care Task Force convened by the American Society of Clinical Oncology [ASCO]. He notes that acceptance by ASCO around 2012 marked an important moment in the mainstreaming of palliative care. CLIP He makes some final comments on the fact that palliative care is not exciting to organized medicine, which is fixated on cure.

Identifier

BrueraE_03_20181105_C14

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; Overview; Understanding Cancer, the History of Science, Cancer Research; The History of Health Care, Patient Care; Ethics; Offering Care, Compassion, Help; Survivors, Survivorship; Patients, Treatment, Survivors

Transcript

Tacey A. Rosolowsi, PhD:

And there were others that you were involved with as well. Were there others that you felt had a significant impact?

Eduardo Bruera, MD:

I worked quite a bit with the World Health Organization, and I continue to do some roles, because I just finished with them, the guidelines for cancer pain management, worldwide. I chaired that committee. I worked with them for many years. WHO was a complex organization to work with, because it’s an intergovernmental organization and therefore, it has a much lower level of independence. It depends on getting consensus from all country members and therefore, it is a very, very difficult organization to bring change into. It’s more about doing what we’re doing the best possible, rather than doing new things. So it was—it would not have been enjoyable if that was all I did, but because I was able to contribute to WHO over time, we made some progress, for example, in the development of palliative care guidelines, in the development of cancer pain guidelines, that was enjoyable. They have the organization for the Americas, called the Pan American Health Organization. The WHO headquarters are in Geneva. The Pan American Health Organization is based in Washington, and basically, the two are intergovernmental organizations. So we collaborated with them, and I was part of several committees over the years, trying to bring palliative care. My focus always was cancer, but we also tried to bring palliative care to the conditions of which patients died frequently in developing countries, such as malaria, tuberculosis, rabies. Conditions that were barely seen in our side of the world were still very prevalent causes of end of life in developing worlds, so we made a point that it’s important to remember that we are personhood care, we’re not disease care. So it’s not a big difference for me to see a patient dying of cancer or a patient dying from congestive heart failure or lung failure or renal failure, because our focus is on persons, and so suffering associated with dying of disease can be addressed. We made a point of trying to empower those teams to deliver palliative care to whatever people were dying of. Of course, that clashed for a while, against medical organizations, and hospitals, and many medical organizations got very angry because they said well, you know, in the middle of the AIDS epidemic, in the middle a tuberculosis epidemic in many countries, malaria, what they said is this is immoral, people should not die of these diseases, we’re there to treat these diseases. Our position was always it’s fantastic, what you’re saying, but the reality is millions of people are dying of these diseases every year. When nobody else dies of these diseases, there will be no need for palliative care for these diseases, but as long as this continues to happen, it’s very nice to be present and to learn how to decrease the suffering of the patient and the family, so we’re going to plug ahead. Basically, we tried to tell those teams, you don’t need to have one palliative care for malaria, another for tuberculosis, another for AIDS, another for cancer; you need to have palliative care for the patients, for the people. Then, many of those groups adopted the palliative care principles that we developed for cancer. There’s no doubt that palliative care was borne out of cancer suffering, and it was borne out of cancer suffering because it was so much the suffering associated with cancer, especially pain and other symptoms, that it was a taboo word, people didn’t even want to say they had cancer, because it was so, so scary. And then that knowledge --we worked at transferring that knowledge to other disease models, that in a sense it was a little bit easier, because there were less taboo diseases than cancer. So that was part of the global effort. I worked with the European association also. I was lucky to be part of the committee that organized the European palliative care association, so the European Association of Palliative Care, EAPC, I was able to participate in the initial discussions that led to that organization and that’s very healthy now. I was able to be part of the discussions that led to organization of the Latin American Palliative Care Association, that also did not exist at that time, and it also has been very successful. So over the years, then of course I was very much part of the American Society of Clinical Oncology that, for many, many years, had great difficulty accepting palliative care and finally they embraced it and they have an annual ASCO Palliative Conference that will take place in the next two or three weeks, and that is a great development because it had brought palliative care to the forefront. Whatever the American Society of Clinical Oncology does, the world follows. It is the leading organization in the planet, and so the moment ASCO embraced palliative care, it meant palliative care was now embraced by the cancer world fully.

Tacey A. Rosolowsi, PhD:

So that must feel like a real landmark moment.

Eduardo Bruera, MD:

That was a wonderful time.

Tacey A. Rosolowsi, PhD:

And what year was that, when you felt it had been accepted by ASCO?

Eduardo Bruera, MD:

It must have been six years ago approximately, but no more than six or seven years ago. So, it was the moment in which finally, I would say six years ago, in about 2012 or so, that ASCO finally said this is important, patients need to have access to this, and our organization needs to sponsor and facilitate that palliative care knowledge be imparted to oncologists and to cancer organizations.

Tacey A. Rosolowsi, PhD:

I’m remembering some of our first conversations, when you were talking about getting interested in this outlier field, being a real non-mainstream person, and this has been a long time coming.

Eduardo Bruera, MD:

It’s been a huge time, I agree with you. I never thought it was going to be so difficult. I mean I always thought that this made—to me, it made so much sense, that I thought that full integration between the person and the cancer, the person and the tumor, the person and the disease, was something that it was absolutely obviously something that was going to be adopted very quickly. Whenever we came out with a new care model, like the Palliative Care Unit or the Supportive Care Center, we thought that that was going to be rapidly adopted everywhere and it took decades for things to be adopted. Obviously, first we did not do the sales job that we should have done, we didn’t do it very well. And second, there’s no doubt that person-centered care, personhood care, is not exciting, or was not exciting. I think it’s getting much better, but it was never exciting to organized medicine, this issue. It’s fascinating, because before the antibiotic era, there was very little doctors could do other than alleviating suffering in their patients and doing prognosis. Then, as medicine moved into this curative stage, almost nothing else mattered. Only curing mattered. That in itself is such a self-defeating attitude, because one hundred percent of humans are going to die. So to assume that medicine could have the luxury of turning its back on those who were suffering before they died, was actually, from the clinical perspective it was just stupid, because a hundred percent of those people that you’re curing today are going to die after that, of another cancer, of another disease. So for medicine to keep a harmonious approach between the technological knowledge, the biomedical knowledge, and the personhood knowledge, would have been very wise, but medicine moved away from it. Fortunately, it’s coming back and the new generation seems to be embracing it, so I’m glad to see that in the last years of my career, I will see person centered care become much more important than ever before.

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Chapter 14: Committee Work, Care Guidelines, and ASCO Acceptance of Palliative Care

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