Chapter 20: Hospice and MD Anderson

Chapter 20: Hospice and MD Anderson

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Description

In this chapter, Dr. Hill focuses on his work with the Hospice Movement. He describes the beginning of the Hospice movement in the U.S. (Dr. Hill attended the movement’s first meetings; he serves on the Board of Houston Hospice.) He explains why Dr. Clark was anti-Hospice at the time. He describes some basic beliefs of the group he worked with, primary psychologists, and shares a number of stories that show how he helped shape how Hospice in Houston functioned and evolved into a centralized institution. He again notes that Dr. Clark was against Hospice and such efforts as “Reach to Recovery.” He contextualizes Dr. Clark’s attitude in the anti-MD Anderson movement in Texas (fueled by MD Anderson’s fee-for-service policy) and explains why his attitude eventually shifted, though he stresses that MD Anderson “does not exist to preside over anyone’s death.”

Identifier

HillCS_04_20120228_C020

Publication Date

2-28-2012

City

Houston, Texas

Topics Covered

The Interview Subject's Story - The Clinician; MD Anderson History; Portraits; Patients; Understanding Cancer, the History of Science, Cancer Research; The History of Health Care, Patient Care; Cultural/Social Influences; Overview; Professional Values, Ethics, Purpose

Transcript

Tacey Ann Rosolowski, PhD:

Well, one thing we haven’t talked at all about is your work with hospice. Did you want to comment a bit on that, because that’s something you’ve gotten involved with?

C. Stratton Hill, MD:

That might have been the thing that I was thinking about because when the hospice movement started, of course, Dr. Clark was no big fan of hospice at first.

Tacey Ann Rosolowski, PhD:

Really? Why?

C. Stratton Hill, MD:

He didn’t like it, to think of Anderson as a place to die. He did not want Anderson to have that reputation, so that was the reason why the requirement for people to come to Anderson was that we had something to offer. We were not to preside over people’s death, and we took a lot of flak for that. I know another thing that I may have mentioned. I don’t know whether I did or not, but when Anderson started up and the doctors in Texas realized this was going to be a serious effort, they were very much opposed to MD Anderson. We can talk a little bit about that later, but when the hospice movement started, since I was running the clinic at that time, that was mine.

Tacey Ann Rosolowski, PhD:

This was the Ambulatory Clinic?

C. Stratton Hill, MD:

Ambulatory period. I was pretty much involved with everything that was going on in delivery of care, so I attended the very first meeting of the National Hospice Organization. That was during the Carter administration, and the Secretary of Health and Human Services was—his name was Califano, Joseph Califano. He was the keynote speaker there, because one of the things that the hospice people were pushing as a plus for hospice care was that it was cheaper. When care became futile, then you should—well, when treatment became futile, let’s put it that way, then you should look at comfort care. Dr. Clark didn’t like that. He didn’t want us to be associated with anything like that. “Okay, you come here, we don’t have anything for you, but we’ll make your life worthwhile for whatever time is left.” That was a no-no. You did not say that to anybody. Actually, when we got more into data collection and evidence-based stuff and we started quoting percentages, he wasn’t too thrilled about that either because he really wanted to hold out hope. He thought, well, you’ve got a 10 percent chance of survival of this particular type of tumor. He didn’t want to dwell on that. We’re going to do the best we can. We’re going to give you the most that you can get and let it go at that.

Tacey Ann Rosolowski, PhD:

Let me ask you a question. When you attended this meeting of the National Hospice Organization—did I get the name correct?—when you attended, this was that something you were doing on your own time because Dr. Clark didn’t approve of that, or what was that about?

C. Stratton Hill, MD:

No, I did that representing MD Anderson. He wasn’t that much against it. He just didn’t want it to be—he wanted me to know about it. But if I’d have come on and written an article for the newspaper, he might have not liked that. But he wanted us aware of what was going on. The whole hospice movement, as it started in this country, was that the hospice people did not want the doctors involved. They wanted to just make the patient as comfortable as possible, but failing to understand the nature of the disease it was not a choice of the disease leaving the patient alone to die. In other words, the disease did things to the patient, and they had the concept— As a matter of fact, the first group that I worked with was a group dominated by psychologists, and they were of the opinion that changes in contemplation of death—and this is my speculation. I mean, I don’t know what they thought. But from the outward manifestation of their behavior, I concluded that they thought that the contemplation, whether it was intellectual exercise or whether or not there were changes that came over the psyche, that you began to get apparently revelations of deep insights into who are we, what are we here for, what’s the purpose of life, and all that kind of stuff, and they were going to be the scribes. They were going to sit down, these people were going to tell them all these different things, and they were going to write it down. Now, that may be an oversimplification. I’m sure it’s an oversimplification, but they did invite me to participate in some of the early meetings of people who were interested in starting hospice here. It was a nurse, a male nurse, who was rather obese, who was behind the whole movement, along with the psychologists.

Tacey Ann Rosolowski, PhD:

Was that connected up in any way with the work of Elizabeth Kubler-Ross?

C. Stratton Hill, MD:

Oh, yeah. No, no, no. Elizabeth Kubler-Ross was parallel. She was coming along at that same time, but she never published anything.

Tacey Ann Rosolowski, PhD:

I was just curious because some of the things that you were saying about the insights that the psychologists felt a dying individual might come to kind of reminded me of those later stages in Elizabeth Kubler-Ross’s notions of the phases of coping with it and that kind of thing. I was just curious about the connection.

C. Stratton Hill, MD:

No, that was all developing at that time. This was— Dame Cicely Saunders was the world leader, instigator, of the hospice movement at St. Christopher’s Hospice in London, and she had a background of a nurse, social worker, and then a physician.

Tacey Ann Rosolowski, PhD:

Just to kind of dot the I on this, the individuals involved in the hospice movement did not want physicians involved because they felt the physicians might try to save the patient or prolong—is that—?

C. Stratton Hill, MD:

Exactly, exactly. In other words, what they would do to the patient would diminish the quality of life, that they’d give them chemotherapy. They’d want to keep on doing this. Anyway, that effort didn’t do much. Then there was a lady by the name of Marion Wilson who came along, and she was a behind-the-scenes instigator and really got the hospice movement going and was able to convince people here to actually do a hospice. I forgot now— The nurse, the big nurse, wanted to call that hospice Helping Hands, which I thought was a pretty good name. I’m not sure if they had a name at that time, they were able to hold this together, and I met with them periodically. [REDACTED] Then there was a young man here who was just finishing medical school. His name was Porter Storey. In the meantime, the people who had started this hospice— Now, hospice was basically in homes. They had no place, and I discouraged that. People were “Oh, we’ve got to get money to build this.” I said, “Look, you can die anywhere. You don’t have to go to a place to die. People die on airplanes. They die on trains. They die in homes. They die in the theater. They die everywhere, so don’t build a place for them to die. You may want some beds to use to do this because the family can’t take care of them, but forget that for the time being.” And they did. They forgot that, and they got organized. They decided to go to the mother lode, and where would you go to the mother lode to get a medical director for a hospice? London, England. They brought a guy over that I had read some of the stuff that he’d written, and he was a typical irascible, inflammatory Brit. He totally didn’t understand the American medical system. He was a disaster. He was a disaster, so they fired him and sent him back.

Tacey Ann Rosolowski, PhD:

Do you remember the man’s name? I was just curious.

C. Stratton Hill, MD:

I want to say it was— It seemed like it began with an H, but I—

Tacey Ann Rosolowski, PhD:

That’s okay. We can add it later if we need it.

C. Stratton Hill, MD:

If I can come up with it. Anyway, so then this guy, Porter Storey, did a residency in internal medicine, and this was before they had actual programs in geriatrics. They were just getting one going in Baylor, and he took that program, and then he became the medical director for the hospice. He was excellent.

Tacey Ann Rosolowski, PhD:

And he must have been pretty young when he took that on.

C. Stratton Hill, MD:

He was. Yeah, he was. He was very much interested in that, and then that particular hospice did well, I would say, in spite of itself. It had conflicts. It had poor— It had some mismanagement or something, but it ended up building a wonderful inpatient unit. It’s over there on Holcombe. I don’t know if you know where that is. That’s the Houston Hospice, and it’s a beautiful building, beautiful facility. It was the home of Oscar Holcombe, who was one of the outstanding—or maybe notorious might be a better term—mayors of Houston. Holcombe Boulevard is named after him, and this house is on Holcombe Boulevard. They were able to do that, but right now, we’re considering finishing out the third floor. It was just finished out, the first two floors. I worked with Porter a lot during that time. We brought people over in palliative care in Britain and places like that, and basically the current medical director, I trained her, Betsy Strauch, S-T-R-E-C-K, I think it is.

Tacey Ann Rosolowski, PhD:

S-T-R-E—

C. Stratton Hill, MD:

S-T-R-A, Strauch, A-U-C-K, I believe, Elizabeth Strauch. It’s doing very well now. I’m just on the board. I’m on the oversight committee for quality, Quality Oversight Committee, and the guy who is now the chairman of the board is Tom Burke. He’s the physician-in-chief at MD Anderson. I have just had peripheral involvement with the hospice in providing speakers here, usually when Porter Storey was there or Betsy wanted somebody. Or if I was bringing somebody for a program in palliative care, I’d call her up and say, “Hey, you want to use this guy or this girl here while he or she is here for a program over there?” And we’d do things like that.

Tacey Ann Rosolowski, PhD:

How did MD Anderson’s relationship with hospice change? Or Lee Clark was—didn’t want to deal with it.

C. Stratton Hill, MD:

He was fading away, and we just kind of did it. His health failed, and he was just not in the loop very much, so as we improved into treatment and could offer more, he went along with adding that to the mix of what people were— But he was even against—well, that goes back to the culture at the time. He didn’t like it for this Reach to Recovery. Are you familiar with that? Well, that’s with the American Cancer Society. In the days of the radical mastectomy, when women were being mutilated, a radical mastectomy removed all the pectoral muscles. You could hardly lift your arm, so they were given exercises to reach recovery. You don’t need a professional to do that, and the American Cancer Society promoted that. Well, he didn’t like that, but he got over that. He became president of the American Cancer Society, the national American Cancer Society, so he got over that. That was in the days when fee-for-service ruled, and that gets into the reason why MD Anderson was considered a persona non grata in the medical profession. It was socialized medicine, and therefore the Texas Medical Association passed a resolution saying it was unethical to refer patients to MD Anderson because it was strictly a fee-for-service. If it wasn’t fee -for -service, it was nothing, and so having a closed staff made it socialized medicine. They lost their patients when they referred because nobody but Anderson doctors could take care of the people, the patients at Anderson. I had a patient one time that was so taken with the care that he’d gotten he wanted to start a branch of MD Anderson in Fort Worth, and that was the hotbed of the anti-Anderson movement. I think that’s called— I can’t remember what county Fort Worth is in right now, but that was the seat of the opposition to any type of care that was not fee-for-service, private practice and so forth. And until HMOs came along, you had to have a— The Texas Medical Association got that in the Enabling Act th¬at only patients that were referred by a doctor could come to MD Anderson. They figured that they could dry MD Anderson up, and then when Dr. Clark said— So then some of the doctors thought, “Well, we’ll just send all of our patients who are dying to MD Anderson, and it’ll become a death house, and nobody will want to go there.” So Dr. Clark stopped that. He never let it get started. So that was some of the politics.

Tacey Ann Rosolowski, PhD:

Right, so that really fed his attitude towards hospice at the beginning.

C. Stratton Hill, MD:

Oh, yes. He just didn’t want— It would be so easy for people to say, “Oh, you can’t do anything with cancer anyway. Go over there and die.” And I can remember when I was running the clinic and getting calls from doctors and referrals, and I’m the one that set up these referral secretaries. I’ve forgotten what we called them, referral specialists or something, and they would ask the doctors the questions. The doctor would say, “Yeah, this patient is jaundiced. He can’t get out of bed. We’ve got intravenous feedings and so forth.” And they’d say, “Well, I’m sorry. We don’t take patients like that.” Well, they’d get mad because they had to take care of a patient dying, and they didn’t want to do that. Sometimes they would refer that into me, and they’d say, “Doctor, you don’t realize it. This patient is dying.” I said, “That’s exactly what I realize, and that’s the reason why we don’t take patients like that.” We’re not here to preside over any individual’s death. That is the time that they need to be with their family and their loved ones and the support of their friends and relatives in a setting that the patient is familiar with. And sometimes the doctor would hang up, and he’d say, “Thank you. Bye.” That was—

Tacey Ann Rosolowski, PhD:

Interesting, but that’s exactly where hospice steps in, obviously.

C. Stratton Hill, MD:

Yeah, that’s what hospice is all about.

Conditions Governing Access

Redacted

Chapter 20: Hospice and MD Anderson

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