Chapter 17: Plans to Develop The Division of Pediatrics
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Description
Dr. Kleinerman talks about several areas she is working on to build the Division.
She notes challenges in developing research areas. She explains difficulties in enrolling children in Phase I clinical trials and the need to develop the Survivorship Program. Dr. Kleinerman then talks about her desire to have an impact on Supportive Care.
Next Dr. Kleinerman talks about the Family Advisory Council and gives specific examples of how the Council provides guidance as programs and units are developed. She observes that the Division of Pediatrics is attempting to preserve a primary care model of care delivery while also working for more efficiency. She notes the influence of institutional silos on survivorship and family-centered care issues.
Next Dr. Kleinerman talks about the need to develop translational research on cell therapy and transplantation. At the end of this Chapter, Dr. Kleinerman comments on lessons about leadership she has learned.
Identifier
KleinermanES_04_20140618_C17
Publication Date
6-18-2014
City
Houston, Texas
Interview Session
Eugenie Kleinerman, MD, Oral History Interview, June 18, 2014
Topics Covered
The University of Texas MD Anderson Cancer Center - Building the InstitutionBuilding/Transforming the Institution Multi-disciplinary Approaches Research, Care, and Education in Transition Patients Offering Care, Compassion, Help Leadership Mentoring
Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.
Disciplines
History of Science, Technology, and Medicine | Oncology | Oral History
Transcript
Tacey Ann Rosolowski, PhD:
Interesting. Hmm. I wanted to ask you if you felt there were any other big milestones in the growth of the division since you took over. I mean, obviously, the Children’s Cancer Hospital is a huge one. Are there others that you would point to?
Eugenie Kleinerman, MD:
Well, I don’t think our clinical research is where it should be. I’m trying to identify funds so that investigator-initiated clinical trials can be done, not relying on pharmaceutical companies or the NIH. The NIH, there’s no money there, and pharmaceutical companies routinely are not interested in kids because of the small market. And I think that’s one of the things that we are very good at at MD Anderson, and the young people that I hired are very translationally oriented and have a lot of good ideas that can be moved into the clinic. So I’ve started that, so I think that needs to improve.
Tacey Ann Rosolowski, PhD:
Can I ask you a little bit of a follow-up question on that? Because I read somewhere that you have been trying to address the difficulty of getting children involved in clinical trials.
Eugenie Kleinerman, MD:
Yes.
Tacey Ann Rosolowski, PhD:
Is that a related issue to the ones [unclear]?
Eugenie Kleinerman, MD:
Yes, yes.
Tacey Ann Rosolowski, PhD:
How so? Tell me about that.
Eugenie Kleinerman, MD:
So, normally when pharmaceutical companies design trials with new agents, it’s for patients eighteen and above. We are learning that many of the pediatric solid tumors have molecular abnormalities or pathway abnormalities that are similar to some of the adult tumors. I mean, they’re not the same as the adult tumors, but the things that go awry, the pathways may have similarities. So that means that some of the agents that they are using in their Phase 1 trials may be applicable to our patient population. So again, that’s one of the advantages of MD Anderson. We have a very active, productive Phase 1 experimental—or Investigational Therapeutics is the department in the Division of Cancer Medicine. And pharmaceutical companies come because of the number of patients that MD Anderson has, and then through this partnership we have been able to lobby the pharmaceutical company to lower the age eligibility. So instead of making it eighteen, make it sixteen, make it fourteen, make it twelve. So that was a great achievement, but the problem was I didn’t have—you know, you have your pediatric faculty that’s here and you have the adult faculty is here, and they’d be lowering the age range, but how does the communication get? So I recently hired a very experienced woman in clinical research to lead this effort. She’s got dual appointments in Cancer Medicine and Pediatrics, and so her job is to—she sits there in the Division of Cancer Medicine seeing what the agents are, seeing what the trials are, and comes over and says, “You know, here we have a patient. This patient could—.”
Tacey Ann Rosolowski, PhD:
Wow. And her name is?
Eugenie Kleinerman, MD:
Cindy Schwartz. She just joined us last September. She was actually chair of Pediatric Hem Onc at Hasbro Children’s Hospital in Rhode Island, a very experienced woman, clinical trials, internationally recognized for her work in Hodgkin’s disease, really defined the chemotherapy that was curative in children and adolescents with Hodgkin’s disease, wrote the first book on survivorship. So here’s a case of I don’t think that she was ever appreciated. She was at Hopkins for many years and really wasn’t appreciated. And this is confidential, so—
Tacey Ann Rosolowski, PhD:
I’ll pause the recorder. [recorder is paused]
Tacey Ann Rosolowski, PhD:
Okay.
Eugenie Kleinerman, MD:
So I was fortunate. I mean, actually I tried to recruit her twelve years ago when she was at Hopkins, but anyway, so she’s here and it’s been a great asset. So, clinical research. And the other thing is I don’t think our survivorship program is doing all that we can be doing. I think there’s great wealth, and so I’m hoping that Dr. Schwartz will also be able to mentor the faculty that are doing survivorship right now.
Tacey Ann Rosolowski, PhD:
Mm-hmm. And that’s a huge issue in the institution at large.
Eugenie Kleinerman, MD:
It is a huge issue.
Tacey Ann Rosolowski, PhD:
Certainly a testimony to the success of all the work that’s going on here and other places.
Eugenie Kleinerman, MD:
Yes.
Tacey Ann Rosolowski, PhD:
What do you feel are the big issues in survivorship for kids?
Eugenie Kleinerman, MD:
Okay. So, you know, we cure these kids and then they go out, you know, school, whatever, and I’ll give you a great example. So I had a child on my MEPACT study and cured her of her pulmonary metastases, and she went on to college, and she was playing basketball and she dropped dead. She was cancer-free, but the chemotherapy that she had been given when she was initially diagnosed with osteosarcoma damaged her heart, and we know this is true with anthracyclines, Doxorubicin, Adriamycin. We know this is true. But not every child gets it. I mean, it’s a huge problem. So that’s just an example. So you have these children that we’re curing, but they have comorbidities. They have cardiac problems. They have bone problems because they get osteoporosis. They have neurocognitive problems. And so they really need to be followed. You need to develop interventions. You know, if you can’t concentrate, are there things that we can teach you to do so that you’re not a failure in the classroom? We can’t just say, “Oh, our job is done. We’ve cured you. Goodbye.” And the problem with that is that that isn’t sexy, and it does take resources to follow things neurocognitively and do interventions and teach all these things. Who’s going to pay for it? And so insurance companies have not really been enthusiastic about having these kids continue to be followed in a survivorship—or even adults, probably, in a Survivorship Clinic that’s in a major Cancer Center, because we’re too expensive. And so they go out into the community, but these community doctors are not familiar with, “What do I need to look for?” So these are the challenges particularly in kids and adolescents, because they’re going to be living many, many more years than a fifty-five-year-old woman who develops breast cancer or a sixty-year-old woman who develops breast cancer, who’s already out of school. Yeah, there may be issues, but I don’t think the impact is as high. Maybe I’m prejudiced, but I don’t think the impact is as high.
Tacey Ann Rosolowski, PhD:
Yeah, I talked to Lewis Foxhall [Oral History Interview], you know, about the communication that they’re setting up with primary care physicians about care for patients after their cancer treatment and during, and I can just see that dovetailing right here.
Eugenie Kleinerman, MD:
Right.
Tacey Ann Rosolowski, PhD:
It’s so interesting.
Eugenie Kleinerman, MD:
Right, right, right. But interestingly, we haven’t been a part of that. We should be a part of that.
Tacey Ann Rosolowski, PhD:
No, that’s right. Yeah.
Eugenie Kleinerman, MD:
We’re not a part of that. We should be a part of that. I mean, we’re seeing patients who are forty years old. We shouldn’t be seeing patients that are forty years old in our clinic. We should be partnering with the adults and having some transition, but there’s bonding that occurs. And the other area that I hope I can impact before I retire is supportive care.
Tacey Ann Rosolowski, PhD:
And what exactly does that mean?
Eugenie Kleinerman, MD:
Okay. So we say palliative care, and that usually means when somebody’s at the end of their disease course and they’re going to die, but palliative care is much more than that. Palliative care is pain control. Palliative care is anxiety, all these things, and these things happen on early in the course of a child’s therapy. And so I think it’s very difficult for an oncologist and for a parent, when things aren’t working and you say, “Okay, now I’m going to refer you to the palliative care doctor or the supportive care doctor, so that we can manage pain at the end of life. There’s nothing to do,” and this sends a very bad message. What if we introduced this concept of supportive care, pain control, right when the patient comes the first time and make the palliative care doctors part of the team? So in the beginning they work on, “Okay, I’m going to help you with your nausea and your pain and your—,” whatever the symptoms are, the symptoms that come from after surgery or chemotherapy, whatever. And so then if things don’t go well, this is a physician the family knows, and you sort of can easily transition. The primary oncologist trusts because there’s collaboration in the beginning, so they know the way each other works. So we just hired a pediatric palliative care physician, and what I’m going to encourage people is to bring him in as part of the care team right from the beginning, bring him in as a consult right from the beginning.
Tacey Ann Rosolowski, PhD:
And his name is?
Eugenie Kleinerman, MD:
His name is Kevin Madden. He’s coming to us from—he’s just finishing his pediatric palliative care fellowship at Boston Children’s. He was at L.A. Children’s for many years. He was actually trained as a pediatric critical care physician, so he knows what happens at the critical care end and clearly understands the things that need to be worked on as you transition families.
Tacey Ann Rosolowski, PhD:
Now, it sounds like the supportive care initiative is very much part of the patients and family perspective that you’ve been advocating.
Eugenie Kleinerman, MD:
Yes, absolutely.
Tacey Ann Rosolowski, PhD:
Will you tell me more about that, if it’s the right time to do that?
Eugenie Kleinerman, MD:
Well, again, we’ve engaged our families. “What do you want? What things are important?” Kevin will be part of our Supportive Care Council, so he will have direct access to parents who have lost children. I’m not sure I understand your question.
Tacey Ann Rosolowski, PhD:
Oh. Well, I just—I mean, I guess I was assuming that you had finished talking about the supportive care, and so I kind of wanted more information about the move in Pediatrics in general to work towards care of the entire family as well as the patient, because I don’t think we’d really talked about what that meant.
Eugenie Kleinerman, MD:
No, that’s true, and again, so that’s what the Family Advisory Council is.
Tacey Ann Rosolowski, PhD:
Oh, okay.
Eugenie Kleinerman, MD:
We listen to the needs of the families, because you never just treat a child, you treat the whole family, and while the adults say that, too, in our case I think it’s more concentrated. When a child gets sick in the family, it affects the mother, the father, and other children. Not to say that when a woman gets breast cancer and she has young children in the family, but it’s not the same. It just isn’t the same. So, yes, so we’ve been listening to our families, and several of our faculty are part of the Family Advisory Council, so they hear the things that the family’s concerned about. Every council is started off with a parent talking about a day in the life, so they give us a little ten- or fifteen-minute peek into what it’s like to live a day in the hospital or out of the hospital, but with a child with cancer, and I think we gain great insight. Going back to the unit, when we were putting up the artwork, we decided we’d better ask our patients what they want on their walls, and so we hired an art therapist to come in and investigate. It was very interesting. Some of the things, you expected. “We don’t want the artwork too juvenile,” the teens would tell us. “We don’t want it too old.” But one of the things that we heard is the children and even the teens did not like pictures of single animals. For example, they hated the picture of Nemo. Why? Because he was lost, he was alone—
Tacey Ann Rosolowski, PhD:
Lonely, yeah.
Eugenie Kleinerman, MD:
—and it made them sad.
Tacey Ann Rosolowski, PhD:
Interesting.
Eugenie Kleinerman, MD:
Never would I have ever thought of that.
Tacey Ann Rosolowski, PhD:
Interesting.
Eugenie Kleinerman, MD:
So when you go up to our unit, you will see it’s either groups of animals and it’s reflective of which pod, where you’re on, whether the meadow, the mountains, the rainforest, or the ocean, or it’s a mother and child. So again, we’ve redesigned the way we do rounds. This was very difficult, because doctors want to sit down and have rounds and go through it very efficiently, and we heard from our families, “The resident comes in and tells us one thing. The fellow comes in and tells us another thing. The nurse tells us something. The rounding man comes, and either we’re in the bathroom—we want to know when rounds are and we want everybody together.” So we have instituted rounds, they start at eight, they end at ten, it involves the senior attending, the fellow, the resident, the nurses, the mid-level, the pharmacist. And you can sit down and have rounds, but you have to go into every room and convey the plan. This is a very painful thing that we’re going through right now, a lot of resistance, particularly from older physicians like me, who are set in their ways. And so this is one of the unpopular things one has to do when they’re division head.
Tacey Ann Rosolowski, PhD:
Right, right. How is that changing the dynamic or the delivery of care, or what are some of the challenges that are coming from this new format of rounds?
Eugenie Kleinerman, MD:
Well, you’re engaging the family, you’re engaging the patient, you’re thinking from their perspective what they want. You’re putting a premium on communication, not just excellence of medical care. And I think that’s what we’re going towards in the United States, and I think that’s going to be a very important measure of quality: patient satisfaction. It slows things down, but, you know, patients are becoming better consumers. And particularly for an institution like MD Anderson and the Children’s Cancer Hospital in particular, where our patients come from outside the local area, we’d better be outstanding in that area. Patient blogs better reflect that, because we are more expensive and patients have a choice, and they don’t think that the quality of the care in terms of not medical care, but delivery and relationships. Relationships are a very important part. A lot of Children’s Hospitals have gone to a format where when the patient is admitted to the hospital, the—and it’s not only children’s hospitals; [Redacted]
Eugenie Kleinerman, MD:
So we are holding onto that primary care model and trying to adapt to the increasing pressures of, you know, see more patients and more efficiency, etc., and yet keeping to maintain that personal relationship because that’s what parents want, because they think, “If you know me and you care about me, I’m going to get better medical. If I’m part of your family, I’m going to get better medical care, but I want you to listen to me. I just don’t want you to tell me.” And as I said, that takes time. But that’s what we’re hearing from our families, and we try to adapt. But it’s tough. It’s tough.
Tacey Ann Rosolowski, PhD:
Now, you said that kind of working with the supportive care model is something that you’d like to really set in place before you leave. Are there other initiatives in that area that you’d like to put in place in the near future?
Eugenie Kleinerman, MD:
In supportive care?
Tacey Ann Rosolowski, PhD:
Mm-hmm, and family-centered.
Eugenie Kleinerman, MD:
You know, I’m not an expert in supportive care, so I’d like to support Kevin when he comes. I’d like to help him communicate with the faculty. I’d like to give what he requests teeth, encourage—not encourage, but sort of incentivize faculty to change the way they practice to bring him in. So that’s where I see my role.
Tacey Ann Rosolowski, PhD:
Mm-hmm. Hmm. Mm-hmm. Now, I’m curious because I had a conversation with Barbara Summer, and obviously nursing care is moving to a real focus on treatment of families and patients within families. I’m wondering as you’re doing this in pediatrics, nursing’s doing this, there are a lot of divisions within the institution that are doing it, is there communication between all of you? (laughs) Your reaction is—
Eugenie Kleinerman, MD:
You ask a really good question. I think that we could be engaged more. I mean, they have asked, supposedly, our director, Patty Wells, but I don’t think that she feels that her expertise—and she set up the Family Advisory Council and Family-Centered Care at Cincinnati Children’s. So we have somebody who’s a real expert. She was a consultant and then we hired her. So this should be more of a partnership, but it’s like they’re doing their thing, and I think we’re way ahead of the game. But, you know, it takes—you have to be secure to say, “You know, these people are ahead of us. We’re not the experts.”
Tacey Ann Rosolowski, PhD:
Right, right.
Eugenie Kleinerman, MD:
But it’s, “Oh, yeah, yeah, yeah, yeah, we’ll—but you go. You’re great. You go ahead. We’ll do our thing.” So I don’t think that we’re being included as much. I don’t think we’re being included in terms of the institutional survivorship issue. I think it’s a very silent voice that we have. So I think still it is not where I’d like it to be in terms of really being enmeshed in the entire MD Anderson Cancer Center. I mean, we’ve made great progress over the last thirteen years. And I suspect I’ll retire and it still won’t be done the way I think it should be done, but, you know, that’s okay.
Tacey Ann Rosolowski, PhD:
Mm-hmm. Well, it sounds like you’ve made some strides, but that’s—yeah.
Eugenie Kleinerman, MD:
Yeah.
Tacey Ann Rosolowski, PhD:
But that was a systemic problem from the very beginning. These things change very slowly.
Eugenie Kleinerman, MD:
Yes, yes.
Tacey Ann Rosolowski, PhD:
Interesting. Interesting.
Eugenie Kleinerman, MD:
Yes. It’s still very interesting to me that when anybody has either a referral for a pediatric patient or they want—they still call me. So, I mean, it’s very nice that I’m the face and I’m the voice of Pediatrics, but clearly it says to me, “You still don’t know my faculty.”
Tacey Ann Rosolowski, PhD:
Yeah, yeah. Interesting.
Eugenie Kleinerman, MD:
And I would hope one day that I would be sort of invisible.
Tacey Ann Rosolowski, PhD:
Right, right.
Eugenie Kleinerman, MD:
And they would pick up the phone and call Dr. Schwartz or they would call Dr. Witting [phonetic] and they would just—
Tacey Ann Rosolowski, PhD:
Yeah, or even just call Pediatrics and say, “Who can I talk to about x issue?” Because it’s the face, it’s the unit itself that’s the source of information and expertise.
Eugenie Kleinerman, MD:
Right.
Tacey Ann Rosolowski, PhD:
Very interesting. Wow. Cultural change in an institution. (laughs)
Eugenie Kleinerman, MD:
Yes, yes.
Tacey Ann Rosolowski, PhD:
Glacial. (laughs)
Eugenie Kleinerman, MD:
I mean, I’m honored and I’m flattered that I’m always the one that gets called as the pediatric expert, because I sort of laugh, because I don’t know anything about some of these—I mean, I’m no longer the expert, because I’m doing administration, so I can’t possibly keep up in what’s going on in, you know, neuroblastoma.
Tacey Ann Rosolowski, PhD:
Right, right. Anything else about the division and milestones in that sense?
Eugenie Kleinerman, MD:
One other thing is I don’t think we are where I think we should be in terms of cell therapy and transplant. We have some creative investigators who have made strides in the laboratory, important discoveries, but it’s not been translated significantly enough, in my opinion. So I don’t think—I mean, the country recognizes Penn, they recognize—I think it’s UCLA, they recognize Dana Farber. I don’t think we’re getting the recognition for the creativity that we have, the possibilities that we have, and that’s because things have not moved as quickly as I think they should have moved. So, again, I’m trying to motivate more translation, clinical trial development with cell therapies. I can’t do everything. I can’t do everything.
Tacey Ann Rosolowski, PhD:
Sure.
Eugenie Kleinerman, MD:
I can only clear the pathways, get rid of the weeds. So in all these initiatives, AYA in cell therapy, I have learned it is not my job to do everything. It’s my job to enable others, and if they are not going to do it, then I have to accept the fact that it’s not going to get done. I can’t just do everything. And it’s not a failure on my part, although I still think it’s a failure, and if I were a better motivator, I could—
Tacey Ann Rosolowski, PhD:
Sounds like that was a leadership lesson you had to learn. (laughs)
Eugenie Kleinerman, MD:
It was absolutely a leadership lesson I had to learn. I had to learn. I don’t know if I told you the story, the first retreat that we had, people were saying, “Well, what do you want me to do? Well, what do you want?” And it was like, “What do you want to do?” But they were conditioned to say, “Okay, this is the leader. The leader’s going to tell us what to do and then we have to do it,” rather than, “This collective, where do we want to be? What’s our vision? What do we want to be known at? What are our strengths? What are our weaknesses? How are we going to address our weaknesses? How are we going to maximize our strengths?”
Tacey Ann Rosolowski, PhD:
How can we each contribute? Yeah.
Eugenie Kleinerman, MD:
Mm-hmm, mm-hmm, and it’s still—it’s better, but it’s still a struggle, which is fascinating.
Recommended Citation
Kleinerman, Eugenie S. MD and Rosolowski, Tacey A. PhD, "Chapter 17: Plans to Develop The Division of Pediatrics" (2014). Interview Chapters. 1413.
https://openworks.mdanderson.org/mchv_interviewchapters/1413
Conditions Governing Access
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