Chapter 09: Shifting the Perception of Palliative Care and Related Services

Chapter 09: Shifting the Perception of Palliative Care and Related Services

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Description

Dr. Bruera note that by 2008 and 2009, after a decade, the institution was more comfortable with palliative care. However, because the department had a perception problem, being known as a kind of "pre-hospice" with the result that clinicians were sending them patients too late in treatment. Dr. Bruera explains a survey the department conducted to assess the impact of the names "palliative care" versus "supportive care." Fewer than 30% said they would feel comfortable sending patients who were early in their treatment process to palliative care. He explains that that he was able to obtain official approval to change the name of the patient center and the mobile teams, and within six months the services had grown by 41%.

Next, Dr. Bruera talks about the wide range of patient issues that supportive care addresses. Dr. Bruera also explains that the Department's growth in business came exclusively from word of mouth referrals of patients and their success was totally unplanned by the institution. He notes that over the past eight years, the supportive care program has been the fastest growing program at MD Anderson, despite the resources that the institution has devoted to growing other areas.

Identifier

BrueraE_02_20180813_C09

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 University of Texas MD Anderson Cancer Center - Building the Institution; Overview; Leadership; On Leadership; MD Anderson Culture; The Researcher; Professional Practice; The Professional at Work; Working Environment; Collaborations; Multi-disciplinary Approaches; Survivors, Survivorship; Patients, Treatment, Survivors; Institutional Mission and Values

Transcript

Eduardo Bruera, MD:

By this time, the institution had gotten much more comfortable with us being around. What we noticed by the year 2008, 2009, was that still, we had a problem with getting the patients to us too late. We were perceived as a service that was a pre-hospice, pre-end of life. So what we did with a young faculty member we had --who then went out to become an endocrinologist somewhere else-- we did a survey of oncologists and nurses, an anonymous survey, at MD Anderson, of two hundred oncologists and advanced practice providers. We asked them how would you feel about a service named palliative care and a service named supportive care, to refer your patients? Close to the end of life, 92 percent of them said they would send us those patients. That to us was very reassuring because if we had done that survey ten years before, we would have found that 10 percent would have said they would send us a patient, because they were not entrusting us their patients. But by 2008, 2009, about nine years or ten years of me being here, that battle had been completely won. For people who had advanced cancer, who were not candidates for treatment, the vast majority of the doctors and nurses at Anderson would send us a patient. However, as the disease became earlier and earlier, fewer and fewer doctors and nurses were willing to refer to us a patient to a service named palliative care. For those with an early diagnosis, less than 30 percent were willing to send us a patient. On the other hand, when the name of that service—and that’s the only thing we asked them, the name. When the name was supportive care, the numbers increased dramatically for early patients, they were way more likely to send us earlier patients. So, we had to go to our Chief Medical Officer, who at that point was Dr. [Thomas A.] Burke [oral history interview] already, and tell him we’ve got a problem here, of perception. We are perceived as—we asked them, why is it, because 44 percent of them felt that the name palliative decreased hope for the patient and family. We’re not asking the patient, we were asking the referring doctors, but those were our real customers. So we went to him and said, listen, we need to change the name of the Outpatient Center, we need to call it the Supportive Care Center. We also need to change the name of our mobile teams, the consult teams. We need to call them supportive care teams. And then he said, “Well, who else is doing this,” and we said well, nobody yet but we are MD Anderson, we’re supposed to be leading things and we’re not supposed to do things only because other people are doing them.” He had a bit of a chuckle and then he said, “Well that’s okay, we’ll do that, okay.” So they sent us the authorization to change the name of our center and to change the name of our mobile teams. Our Palliative Care Unit remained Palliative Care Unit, because there was zero problem with people who were facing end of life care. Our survey clearly said that. The problem was with earlier patients.

Tacey A. Rosolowsi, PhD:

Right.

Eduardo Bruera, MD:

Within six months of changing the name, our business grew by 41 percent and so it was an explosion of referrals within six months of getting the name changed. It unleashed a lot of people who really felt that they needed help with those patients, but they were reluctant. They suddenly opened up and they started sending us more patients.

Tacey A. Rosolowsi, PhD:

Now here may be a good time to ask, because I haven’t really asked to this point, what is the array of services that you provide, provided at that time and continue to provide, for this area of supportive care for people early in the disease process?

Eduardo Bruera, MD:

Well, for example, of course the main problem in this stage is physical and psychosocial symptoms; people who have pain, fatigue, nausea, lack of appetite, but also people who feel depressed, anxious, poor sensation of well-being, cannot sleep well. People who have family distress, people who are ill and they have young children who are distressed, or who have a spouse who is either unable to address their needs or distress, people who have spiritual distress. This is God’s punishment, or I used to believe in God but God could not do this to me, now I don’t believe in God any more. People who have financial distress; I am doing this for myself and I’m being so selfish because I’m spending the college education of my children in treating my cancer. So people who had multiple reasons to feel really bad, that was the number one priority, but also there were issues of organizing their care. Who will take care of me, who will drive me to places, who will get me back? When families were not always aware of what was going on, aware of how they could help the patient, the primary teams felt kind of a bit lost about what to do. They also frequently sent us patients. Also, somebody might be really starting treatment and have a really good short-term prognosis but a really bad long-term prognosis. So then they might send them to us to establish a relationship, because they knew that the ending was not going to be good, but things are not looking bad right now. Establishing a relationship early might prevent these patients from being in worse distress later on.

Tacey A. Rosolowsi, PhD:

Right.

Eduardo Bruera, MD:

So those would be the packages, I think, about the overall services that we provided.

Tacey A. Rosolowsi, PhD:

Now how did you go about communicating this array of services to people within the institution?

Eduardo Bruera, MD:

It had to be word of mouth. We were never depicted by the institution in any internal advertising, in any internal promotion, absolutely nowhere in the institution. Actually, most of the time we were not even announced that we existed.

Tacey A. Rosolowsi, PhD:

Why do you think that was? I’m sorry, I didn’t mean to interrupt you.

Eduardo Bruera, MD:

Well partially, I guess it was not a major focus of what the institution was all about. It was making cancer history, it was basically treating cancer aggressively. The cancer was brought to the institution by a person and the person frequently suffered, physically and emotionally, but there was not a lot of interest in making this a centerpiece. Some people might be afraid that if we were to acknowledge that people suffered and that people died, the institution might lose credibility or might lose resources. I was personally convinced that that was going to be exactly the opposite, because what people fear more than death is pain and suffering. And an institution that will be welcoming and embracing you, and telling you don’t fear coming here, we will deal with your cancer but we’ll deal with you and your family --to me, that was a great sales pitch. But for that reason --I am not a wealthy person-- I have never been able to sell anything very well, so I don’t know. Other people who were into the business area thought that maybe it wasn’t that cool. Therefore, because we had no power in any element, we were not really visible in the institution. So, a hundred percent of our growth, a hundred percent was word of mouth. If a physician saw a patient and sent them to us and they did very well, then they would send us another, and then they would meet a colleague and say you know what, I’m using these guys, Bruera and his team, and they’re doing a good job with me. Oh, okay that’s good. So, something happened that was totally unplanned for the institution, that is for the last eight years in a row, eight or nine years in a row, since we changed the name to supportive care in 2010, so for eight years in a row, the Supportive Care Program has been the fastest growing program at MD Anderson, more than any other program, every single year for the last eight years.

Tacey A. Rosolowsi, PhD:

Wow.

Eduardo Bruera, MD:

We have had more referrals than any other program, and that was—even though the institution, during that time, made big promotions of other services and other programs and so on. They never once mentioned us in any documentation or any advertisement. One of the challenges for us was to keep our growth possible, because many of our administrators and leaders had trouble accepting that we were growing at the rate we were growing, because we were not intended to grow. There were other things that were intended to grow, we were not. The doctors and nurses from MD Anderson knew better. The ones that were not powerful but were seeing most of the patients said, these people are helping my patients and my patients feel better when they go to see them, so I am going to send the patients. They were basically sending us the patients.

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Chapter 09: Shifting the Perception of Palliative Care and Related Services

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