
Chapter 12: The Long-Term Surveillance Clinic
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In this chapter, Dr. Jaffe talks about his work with MD Anderson’s Long Term Surveillance Clinic. The Clinic was already in existence when he came to MD Anderson in 1978, however he was recruited in part to expand the Clinic, based on his experience with a similar unit at the Dana-Farber Cancer Institute (established in ‘72/’73). (Dr. Jaffe wrote the first paper on radiation and survivorship [published in ’75] and he suspects this was instrumental in the creation of a number of survivorship clinics.) He notes that with the use of radiation and chemotherapy, the numbers of pediatric cancer survivors grew exponentially, and they also exhibited many complications from their treatments. The Clinic monitored all the complications and referred patients to the service that could address them. Dr. Jaffe then talks about the many people involved in the Clinic. When Dr. Jaffe arrived, Dr. Hubert Ried directed the Clinic with the assistance of nurse practitioner, Hallie Zietz (whom he describes as “the heart and soul” of the Clinic). The three of them worked together to expand services and write papers. Dr. Jan Van Eys, he explains, was an advocate of monitoring nutrition in survivorship. He explains why nutrition is and issue and how his experience with patients with such afflictions as kwashiorkor in South Africa sensitized him to malnutrition in cancer patients. Dr. Jaffe also credits Dr. Van Eys with establishing psychosocial support as a key element in the survivorship clinic. Donna Copeland was Chief of Psychosocial Services. Dr. Jaffe gives several examples of the kinds of challenges children face. He also explains that Dr. Van Eys developed the position of the Child Life Worker to help children adjust. He describes the role of the Child Life Worker –who might, for example, go to a child’s school to sensitize other children to why a cancer survivor might not look like other children or might have some kind of disability. This kind of support role owes a great deal, Dr. Jaffe explains, to Dr. Sidney Farber’s concept of total care. He talks about how pediatric patients are dealt with differently now than in the past: for example, efforts have to be made now to obtain a child’s permission for treatment, and he gives examples of how a procedure might to explained to a very small child of four or five. He also returns to the example of the Ski Program, run through the Survivorship Clinic, and notes that the video, Amputation is no Barrier, was produced to showcase the Ski Program and the activities it offered to survivors.
Identifier
JaffeN_03_20120831_C12
Publication Date
8-31-2012
City
Houston, Texas
Interview Session
Topics Covered
The University of Texas MD Anderson Cancer Center - An Institutional Unit; Building/Transforming the Institution; Patients; Professional Practice; The Professional at Work; The History of Health Care, Patient Care; MD Anderson History; MD Anderson Snapshot; Institutional Mission and Values; MD Anderson Culture
Transcript
Tacey Ann Rosolowski, PhD:
I’m Tacey Ann Rosolowski, and I’m in the Reading Room of the Historical Resources Center in Pickens Tower, and this is my third session with Dr. Norman Jaffe this morning. It is about 10:39, and it is August 31st, amazingly. Good morning, Dr. Jaffe. Thank you for coming in this morning.
Tacey Ann Rosolowski, PhD:
+ We talked last time about the ski program that you set up, which is obviously for cancer survivors, but we didn’t talk about your role as chief of the long-term surveillance clinic for pediatric patients, and you held that role for four years, between 1996 and 2000. Would you explain to me how you came to assume that role and what your goals were in that particular position?
Norman Jaffe, MD :
When I was at the Dana-Farber Cancer Institute I began to recognize that there were an increasing number of long-term survivors. Not only that, but certain problems and complications occurred in these long-term survivors. I would point out that prior to my advent at the Dana-Farber Cancer Institute, long-term survivors were a rare commodity. In fact, they probably did not exist. But as a consequence of the advances that we had made over the period of time, particularly at the time that I was there, we began to see an increasing number. But in addition to that, I noted that complications occurred as a result of the chemotherapy which had been administered and also in particular as a result of the radiation therapy. I therefore established a long-term surveillance clinic for long-term survivors.
Tacey Ann Rosolowski, PhD:
And when did that happen at Dana-Farber?
Norman Jaffe, MD :
I came to Dana-Farber in 1966. I would imagine that I started that in 1972-1973. The clinic grew almost exponentially, so much so that I wrote the first paper—I think that would be the first paper—on complications of long-term survivors as a consequence of the administration of chemotherapy and radiation.
Tacey Ann Rosolowski, PhD:
I think that was in 1975.
Norman Jaffe, MD :
In ’75. It appeared in Radiology, and prior to that I could not find, as I recall, any particular publication relating to this topic. The clinic developed quite remarkably, and when I was invited to assume the position at the MD Anderson Cancer Center Dr. van Eys asked me not only to be the chief of the solid tumor section but also to expand and improve the clinic that had already been in existence at the MD Anderson Cancer Center. That clinic was under the direction, shall we say, of Dr. Hugh Ried. He did a fine job, but he was only a part-timer. He used to come only twice a week.
Tacey Ann Rosolowski, PhD:
That was in existence then in 1978 when you came.
Norman Jaffe, MD :
It was. It was in existence. I think it was probably established as a result of the publication and the understanding that I had shown people what could occur from long-term survivors. Of course, as a result of that publication— I’m not sure I can really obtain credit for every clinic that became in existence at that time, but it began to spring up in various clinics now. I think others must also have recognized the problems that had occurred or were developing in long-term survivors, and this clinic now was also in existence at the MD Anderson Cancer Center. Dr. Hubert Ried was joined by a young lady called Hallie Zietz, a remarkable person, who incidentally became the administrator of my ski trip, my Ski Rehabilitation Program. She’s a very good skier, and between Dr. Ried, Hallie Zietz and myself, we expanded that clinic and devoted a fair amount of attention to long-term survivors.
Tacey Ann Rosolowski, PhD:
What was the purpose of the clinic at the time, and what did you address?
Norman Jaffe, MD :
We addressed all the complications that could occur from long-term survivors, directed them to the appropriate rehabilitative component that would be required and also to the medical and surgical services that were necessary as a result of the findings that we had detected. In fact, we wrote several papers on long-term survivors at that stage. I think we have about ten or fifteen papers arising from that clinic. Hallie Zietz, I think, became the cogwheel of that clinic because she devoted heart and soul to it, and she was supervised by Dr. Hugh Ried and by myself, but I felt that Dr. Ried was doing an extremely good job and left him to do it. When he was away on vacation or could not come because he was only a part-timer I stepped in.
Tacey Ann Rosolowski, PhD:
What happened in 1996 when you became chief? How did that happen? He chose to leave? You were chief of the long-term surveillance clinic.
Norman Jaffe, MD :
And I remained [as chief].
Tacey Ann Rosolowski, PhD:
Okay, so when you came you had involvement from 1978 to 1996, but then you had an official position change, and you were named chief at that time.
Norman Jaffe, MD :
I think that was the time that Dr. Archie Bleyer came, and Archie Bleyer rearranged the services.
Tacey Ann Rosolowski, PhD:
Okay, so it wasn’t really an effective change in your role. It was a nominal change.
Norman Jaffe, MD :
That’s correct.
Tacey Ann Rosolowski, PhD:
Now, I was really interested at the real array of things that you addressed. Nutrition, for example, and then psychosocial support, and I wonder if you could take me through some of those specific services, because it seemed very comprehensive.
Norman Jaffe, MD :
Well, Dr. van Eys was a great advocate of the nutrition factor in cancer survivors, and he asked me also to pay particular attention to that particular problem. Because of my background in South Africa, we had kwashiorkor, and malnutrition was a major problem. I was able to attend to some of these factors.
Tacey Ann Rosolowski, PhD:
How do those nutritional problems arise as a result of cancer?
Norman Jaffe, MD :
Well, in the immediate cancer treatment they arise because patients are subjected to nausea and vomiting and major problems as a result of the chemotherapy that they are being treated with. In addition, they receive radiation therapy to the mouth or the gastrointestinal tract, and they’re unable to consume their foods or even to absorb the nutrition of their foods.
Tacey Ann Rosolowski, PhD:
What is the approach for treating that problem?
Norman Jaffe, MD :
Well, there are various ways. We can give them intravenous therapy, intravenous food. We can also give them different types of enteral feedings, bland feedings and things of that nature. At times they may even require a gastrostomy or something of that nature.
Tacey Ann Rosolowski, PhD:
What is a gastrostomy?
Norman Jaffe, MD :
That is to put a tube into the stomach either by a small operation or through a nasogastric tube.
Tacey Ann Rosolowski, PhD:
What about the psychosocial support?
Norman Jaffe, MD :
That was a major factor of Dr. van Eys’s stewardship at the MD Anderson Cancer Center. He really developed it to a remarkable extent, and I also elicited the services of the psychosocial services that were available at that particular time. I think Donna Copeland was the chief of the psychosocial services, and she assisted us in providing comfort, support, and guidance to our patients.
Tacey Ann Rosolowski, PhD:
Can you give me an example of a particular case in which the need for that would arise? I know it sounds kind of obvious because with children it’s so complicated, but it would help to make it concrete.
Norman Jaffe, MD :
I’m trying to think. Say a youngster of about ten or twelve may have problems in being accepted by his or her peers because of alopecia, loss of hair, because of the different way she looks or he looks and things of that nature, and that child would have to undergo psychosocial treatment in order to understand that hopefully this will be a temporary measure, and in the course of time it would improve. And in addition to that—I don’t know if it was through Dr. Copeland or others—but we arranged for our child life worker or various other people to go to the schools and explain to the schools that a child who was being treated with chemotherapy for cancer would hopefully become normal in the course of time.
Tacey Ann Rosolowski, PhD:
I’ve never heard that phrase, child life worker.
Norman Jaffe, MD :
Yes, Dr. van Eys organized child life workers. At the Dana-Farber Cancer Institute we used to call them play ladies, but they were child life workers. They have a degree from the university. They entertain the children in the afternoon. They sit with children. When the child goes for an operation, they may accompany the child to the preoperative room and things of that nature, discuss things with the child, comfort the child, give them strength and support and things of that nature, and they also have a very close relationship with the parents of the child, and this is a recognized entity of the child life worker.
Tacey Ann Rosolowski, PhD:
And when did the child life worker become an important part of the treatment team?
Norman Jaffe, MD :
It was certainly in existence when I came over here through the efforts of Dr. van Eys who, as I say, was the chief of pediatrics at that particular time.
Tacey Ann Rosolowski, PhD:
So you had them at Dana-Farber too?
Norman Jaffe, MD :
We had them, but they weren’t as well developed at Dana-Farber as they were over here. I was very impressed with what had been established over here.
Tacey Ann Rosolowski, PhD:
Dr. van Eys, that was sort of his brainchild, if you will. That’s amazing.
Norman Jaffe, MD :
In fact, I will tell you that he had about four or five annual meetings on the psychosocial aspects of children with cancer and published books about that. There are books in existence of the meetings that were held. And in passing, I think the books had some catchy titles. One was called The Normally Sick Child or The Truly Cured Child, another meeting and so on, and it was published as a result. I remember I contributed some chapters to each of these different meetings, and I think they were published.
Tacey Ann Rosolowski, PhD:
Yeah, I can imagine how that would be an enormous help not only to the child but to the parents who I imagine feel tremendously lost dealing with a child in such dire circumstances.
Norman Jaffe, MD :
In fact, that was the concept originally advocated and published by my first mentor, Dr. Sidney Farber. In fact, I would say my only mentor. He introduced a concept of what is called total care. That is the care not only of the child in terms of the delivery of chemotherapy, radiation therapy and surgery, but an attention and direct involvement in the psychosocial aspect of the child and to help them in terms of social work, in terms of social welfare and things of that nature. It was a true concept of what he called ‘Total Care.”
Tacey Ann Rosolowski, PhD:
Now, how has that idea evolved and expanded during the time when you arrived in ’78?
Norman Jaffe, MD :
Oh, it has developed tremendously. Today there is a subsection—I’ll call it a department—in our Division of Psychosocial Medicine. Dr. Rhonda Roberts is in charge of that.
Tacey Ann Rosolowski, PhD:
And in terms of the expansion, there’s a subsection which I imagine is responsible for conducting a great deal of research. What are some ways in which this section has changed the way that children are treated over the years with new discoveries?
Norman Jaffe, MD :
It has changed tremendously because nowadays we have to obtain informed consent or assent from a child before we start chemotherapy. That child has to have everything explained to him or her. I don’t know if they entirely understand it, but we try as much as possible to use simple terms and to advise them of the problem, the treatment, and hopefully the beneficial consequences that can occur as a result of the implication of such treatment.
Tacey Ann Rosolowski, PhD:
Even a tiny child? How old a child would you sit down with?
Norman Jaffe, MD :
I would say about— You’ve got to adjust it according to the age of the child, but a child of even four or five, we’ll say, “We are going to give you some medicine. It may be a stick,” and so on and so forth. “It will hurt a little bit, but we’ll try and make it as little as possible. It may cause some nausea and vomiting, but we’re going to try and control that, and the ultimate goal is to cure you completely.” And in addition to that, we use the various TV programs that a child can view on TV, to the extent that we will say, “This is what would happen, for example, if so and so were trying to get treatment in this particular thing.” But that is the expertise of the child life worker.
Tacey Ann Rosolowski, PhD:
I’m just thinking of some people I know who have had childhood cancer and who did not have that kind of service.
Norman Jaffe, MD :
It’s changed tremendously, and it’s still evolving, incidentally.
Tacey Ann Rosolowski, PhD:
It’s so critical. Are there other areas of activity of the survivorship program that would be worth describing at this point?
Norman Jaffe, MD :
As I say, in my particular area I was extremely concerned about the deficits that were imposed upon an amputee, and as a result of that I established the Ski Rehabilitation Program, which incidentally, was not my idea from the beginning. It was because of Ted Kennedy, as I think I explained to you, and we keep in touch every now and again. I think he’s very proud of it. I certainly am proud of it, and fortunately, this year, as I said, for the coming year we do not have sufficient funds, but parents have collaborated together, and they are going to have that particular program again next year in the absence of an official doctor, an official sponsorship by MD Anderson. But we hope to continue it the following year, in other words, for 2014.
Tacey Ann Rosolowski, PhD:
I have a note here that you were involved with the rehabilitative care programs at Children’s Cancer Hospital. Is that correct?
Norman Jaffe, MD :
That’s the rehabilitative program we did.
Tacey Ann Rosolowski, PhD:
Okay, so we’ve already covered that adequately. We haven’t talked, however, about the video that you were responsible for creating, Amputation is No Barrier.
Norman Jaffe, MD :
That’s part of this, and that video is available to you. I think one of the individuals who run the informational program over here could get it for you, or I have a copy if you need that, but you will have to use the old system. It’s not on a DVD.
Tacey Ann Rosolowski, PhD:
Yeah, maybe it could be converted.
Norman Jaffe, MD :
I’ll be happy to give it to you, and if you can get it converted you’ll give me a copy of the conversion?
Tacey Ann Rosolowski, PhD:
0:17.49.0 Absolutely. Tell me what the content is and what the purpose of it is.
Norman Jaffe, MD :
It tells you exactly what we do on the Ski Rehabilitation Program, and I think it’s entitled Amputation is No Barrier.
Tacey Ann Rosolowski, PhD:
How do you use it?
Norman Jaffe, MD :
We don’t use it anymore because everyone knows about this ski program, and when people come along for the ski program and so on we videotape them. We show them all sorts of things, and at the end of every rehabilitation session, in other words, at the end of every ski program, we give them a DVD of the events of that particular time. They can use that, and they are our best ambassadors to show others about the program. Each year the program obviously changes because there are different participants of that particular program.
Tacey Ann Rosolowski, PhD:
Why did you decide to document these ski programs visually like that?
Norman Jaffe, MD :
Because we thought it would be a good idea to demonstrate to others what we were doing.
Tacey Ann Rosolowski, PhD:
And I imagine it would do something kind of neat for the participants, too, to see themselves.
Norman Jaffe, MD :
Absolutely. That’s exactly the point.
Tacey Ann Rosolowski, PhD:
Originally, when you did the Amputation is No Barrier, who were the recipients? Who did you send it to?
Norman Jaffe, MD :
MD Anderson has this particular video program for that. They have a staff that will go around. I don’t know if they are still in existence, but it was in existence at that particular time, and the entire crew came up with the cameras, their microphones, their photographers and so on and so forth and took pictures of us, took the videos and things of that nature.
Tacey Ann Rosolowski, PhD:
It was used pretty much in-house to inform people who might be participating.
Norman Jaffe, MD :
And it was also used when I went on talks about our programs.
Recommended Citation
Jaffe, Norman and Rosolowski, Tacey A. PhD, "Chapter 12: The Long-Term Surveillance Clinic" (2012). Interview Chapters. 1150.
https://openworks.mdanderson.org/mchv_interviewchapters/1150
Conditions Governing Access
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