Chapter 13: Building the IAHPC [International Association for Hospice and Palliative Care] and the Challenges of Cross-Cultural Care

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Chapter 13: Building the IAHPC [International Association for Hospice and Palliative Care] and the Challenges of Cross-Cultural Care

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In this chapter, Dr. Bruera talks about his work developing the IAHPC [International Association for Hospice and Palliative Care]. He explains that around 2000 he brought the headquarters of this organization to Houston to better manage its evolution and its ability to promote hospice and palliative care globally. He sketches some of the work done to foster regional organization of these care services. Next, Dr. Bruera discusses the very significant issues that arise when adapting patient centered care to other cultures with different senses of family and social organization, meaning, and spirituality. He gives two main examples. The first covers differences in practices about disclosing a cancer diagnosis to patients. He notes that in the West, the original practice was not to disclose a diagnosis to a patient/family because of fears surrounding the disease, a practice that changed with shifts in medical ethics. The second example focuses on challenges in cultures where the family serves as the patient's advocate and sometimes comes to meet with the care team before the oncologists see the patient. He discusses challenges for Western physicians working in those contexts as well as clinicians from the culture who are educated in Western medicine, but need to adapt back to practicing in their own cultures.

Identifier

BrueraE_03_20181105_C13

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; Leadership; On Leadership; Beyond the Institution; Activities Outside Institution; Professional Practice; The Professional at Work; Overview; Overview; Building/Transforming the Institution; The Researcher; Cultural/Social Influences; Global Issues -Cancer, Health, Medicine; Women and Diverse Populations; Ethics

Transcript

Tacey A. Rosolowsi, PhD:

I can imagine that. Now you were about to tell me about some of the external committees you worked on. I have the Palliative Care Committee for Latin America, via the World Health Organization, and a number of others. What were some of the most important ones for you and what were your roles on those committees?

Eduardo Bruera, MD:

One of the things that I thought was nice, is that soon after I arrived, I was offered to become the president of the International Association for Hospice and Palliative Care, the IAHPC. I basically discussed that with the leadership, because the leadership was in Australia, and I told them, I can only do this if we bring the organization to Houston, because I would need to work very closely with an executive director. The board agreed that we could relocate IAHPC to Houston, and I believe that was around the year 2000. And so we brought IAHPC here and actually, nineteen years later it’s still in Houston, and I hired the executive director, who became the person running the organization.

Tacey A. Rosolowsi, PhD:

Who is that?

Eduardo Bruera, MD:

Her name is Liliana De Lima. She had been running a hospice initially, in Columbia, but she had relocated, with her husband, to Houston, and basically I said also to the board, I’ll do it with two conditions. First, I’ll move it to Houston, second, I’ll hire Liliana, because I knew she was very, very good. And then, I was able to hire her and actually, she’s retiring later this year, so she was running it for nineteen years. I only was the president for four years and then I stayed at the board for another eight or nine years, but during that time, I think we were able to help promote the model of hospice and palliative care with a global perspective, and that was very attractive because we started using online programs, we started organizing meetings. We helped organize regional organizations, both in Latin America, India, Africa, and those organizations, we believed were very, very important, because now they could discuss their own problems with a very original, independent perspective.

Tacey A. Rosolowsi, PhD:

Are there cross-cultural differences in palliative care needs?

Eduardo Bruera, MD:

Yes.

Tacey A. Rosolowsi, PhD:

Tell me a bit about that.

Eduardo Bruera, MD:

I think those are way more significant than those that you find in other areas of cancer care, because the prostate is the prostate, the liver is the liver. The differences are absolutely minimal. But my approach to my life, my end of life, my family, my spirituality, even things like just my entertainment and my food, are dramatically different in different areas of the world and therefore, integrating palliative care needs to respect how things are done in each of those cultures. How the patient and the family communicate with the doctor, with the nurse, with each other, what are their values. So it requires, I think much more adaptation to the societal values than other areas that are a bit more genetic with medicine and cancer care.

Tacey A. Rosolowsi, PhD:

Just to kind of make it more alive for me and for the listener, can you give me an example of something you discovered in one of these cross-cultural interactions that really surprised you?

Eduardo Bruera, MD:

Yes, there were several issues that were very attractive to study and to understand. One of them was, for example, the disclosure of cancer and the disclosure of end of life, something that was accepted universally in North America, both in Canada, where I worked for fifteen years, and in the United States. It did not happen in a large majority of the patients in developing countries and therefore, palliative care had to be inserting itself into a disease model and a communication model, where upfront, telling a patient you have cancer or upfront, telling a patient I cannot cure your cancer and the cancer is likely to be the cause while you will die, were not the norm. And so if one was to reach those patients and families and help them, one had to—one could not bulldoze the way things were done. One had to kindly and gently integrate into that model, and then slowly from inside change it and increase frank and honest communication, and empower those clinicians with a way to change their own system, because coming with the assumption that universal disclosure was the appropriate way, would have caused a cultural clash that would have been devastating for the careers of those doing palliative care. They would not get any more referrals, nobody would want to have them see a patient.

Tacey A. Rosolowsi, PhD:

What would be some of the reasons within the culture, that there would not be a kind of stark, upfront disclosure of cancer, because there’s always a reason, why that mechanism is there.

Eduardo Bruera, MD:

Right. I think it’s very likely, purely evolutionary. During the 1960s in the United States, disclosure of the diagnosis and the prognosis was also very minimal. Most doctors did not tell the patients they had cancer, they were going to die. Emperor Hirohito from Japan was never told that he had prostatic cancer, and he was dying of prostatic cancer. Also Franco, the dictator from Spain, was also having prostatic cancer and also was not told. So it was not just what we might call the patients who are disadvantaged. It was actually very powerful people were not told, and that was due to the feeling that there was so much terror and fear around the word cancer and the end of life, that it was not compassionate to share, with a patient and family, those terrible news. So patients were frequently not told what happened to them. The grandfather of Queen Elizabeth in the UK, also had lung cancer, and initially, he had a pneumonectomy and was not informed of the diagnosis of cancer, and so he was mistaken in thinking that things were going to get better, and then he started having symptoms again and finally, his doctor was having to tell him. So, initially, people feel that it’s cultural, but it’s not really cultural, I think it’s more evolutionary, and within a decade, between ’60 and ’70, in the United States, patients went from 10 percent knowing the diagnosis to 90 percent. Then, in the ‘90s, the same things happened in Japan, and I could say that this model is happening now worldwide. I don’t think it’s just the work of palliative care, because it would not be fair. I think it’s just the understanding of what is in the best interest of a patient and family, in a sense, the understanding of medical ethics has evolved a little bit. We were, of course, we were very much part of those changes globally, and so that was one of the issues that we felt was important. The other kind of cultural change relates to the communication between the patient and the family and the doctor and the medical team. That is, in many countries, patients and families, patients prefer their family to be their advocate, and so in the decision of palliative care issues, contrary to what happens in the United States, where the patient arrives either alone or with one person, in many developing countries, the family arrives first and two or three relatives arrive first, to discuss with the doctor, the patient’s care and what happens, before the patient enters the room or before the patient enters the realm of care.

Tacey A. Rosolowsi, PhD:

That’s kind of interesting. I’ve read how either --differences in cultures, is it an individualist—do people think of themselves as individuals first, or do they think of themselves as part of a corporate entity first.

Eduardo Bruera, MD:

Yes.

Tacey A. Rosolowsi, PhD:

You know, and those are cultures that you’re part of a group, that’s your first notion of your identity. How interesting. So I’m sorry, I interrupted you.

Eduardo Bruera, MD:

Oh no, that’s exactly, I completely agree with that. Those, I think were two important things, the disclosure, but on the other hand, how you communicate as the disease progresses and so on. So there were major cultural issues and it was very nice to see that palliative care was successful in those environments also, and there was great support and gratefulness from patients and families, for having received palliative care in those environments.

Tacey A. Rosolowsi, PhD:

So, I can imagine that for a western doctor, for example, arriving on a scenario like that, it would be very disorienting to have family arrive first. What are some of the communication challenges that they would confront in that scenario? How would their communication strategy be different if the family comes first as the advocating body?

Eduardo Bruera, MD:

There would be significant differences in the sense that the initial reaction from the family is we can learn anything that is going wrong with dad or with mom, and so on, and we can discuss it with you, and we can discuss the possible treatments and we can discuss the medications, but we would not like you to discuss that with the patient, with mom or with dad. Then, one of the challenges for that clinician is that this idea of collective decision making about their care was --well, for somebody trained in the west it was foreign. For somebody trained in those countries, they have difficulty incorporating the principles of palliative care to the way they were supposed to practice, so we had to help them understand how the principles of multidimensional care, of your physical, emotional, social and spiritual suffering could be addressed in that environment and yet, because it was creating an enormous amount of distress and cognitive dissonance from those doctors who were coming here and training, or those nurses who were training here, and so one level of communication, and then they had to go back home and apply that in an environment where the communication was totally different. So it was nice to make them feel good about themselves, to understand that we are there to reduce suffering, not to turn end of life into a picnic, that is not possible, and that they should not put that burden on themselves, and they should also not try to change society. They were not there to change the social rules, they were there to help very ill and dying patients and their grieving families through a very difficult time, and in the meantime, things might evolve, things hopefully will evolve, but at this point, you are doing, one at a time, building those relationships and helping patients and families. They did it and we enjoyed seeing them grow and develop. Communication has improved a lot now in many countries, so it’s much more open that it has ever been before.

Tacey A. Rosolowsi, PhD:

Wow, that’s amazing. So, these are some of the success stories that you had with this organization you were working with, the one that you brought to Houston, I’m sorry, the IAHBC.

Eduardo Bruera, MD:

Perfect.

Tacey A. Rosolowsi, PhD:

Yeah. And for the record, I’ll just confess, I had to read that, I did not remember it!

Eduardo Bruera, MD:

That’s all right, good, good.

Tacey A. Rosolowsi, PhD:

Does that describe what you feel you accomplished with that particular organization?

Eduardo Bruera, MD:

Oh yes, yes, perfectly well.

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Chapter 13: Building the IAHPC [International Association for Hospice and Palliative Care] and the Challenges of Cross-Cultural Care

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