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Committed to Pediatric Palliative Care: Q&A With Chris Feudtner, MD, PhD, MPH
Chris Feudtner, MD, PhD, MPH, didn't always know he wanted to pursue a career in pediatric medicine, but he knew he had found his life's work when, as a medical student at the University of Pennsylvania, he first examined a sick baby. On April 28, the American Pediatric Society (APS) honored Dr. Feudtner with the 2023 Norman J. Siegel New Member Outstanding Science Award for his significant contributions to pediatric sciences. Dr. Feudtner is chief of the Division of General Pediatrics and director of research for the Justin Michael Ingerman Center for Palliative Care at Children's Hospital of Philadelphia, where he holds the Steven D. Handler Endowed Chair in Medical Ethics. This pediatrician has dedicated his career to improving palliative care for terminally-ill pediatric patients and their families, and he is recognized internationally as a premier researcher in the field. Cornerstone spoke with Dr. Feudtner about the formative experiences that have shaped his journey as a clinician and researcher.
What interested you in medicine, and why pediatrics?
I majored in molecular biology and envisioned my future in a lab. But I did enough research as an undergrad to realize that I wasn't well-suited to be a laboratory-based scientist. At the time, I didn't have any backup plan, but I was lucky to be able to go abroad to England and pursue a degree in the history of science and medicine. Through both personal experiences and reading a lot more about medicine, I overcame my reluctance to think about a medical career. I realized it might be much more interesting and fulfilling than I had imagined.
Then, in medical school, I had the opportunity to examine a baby who had biliary atresia. I was able to palpate that baby's liver with the father and mother right there next to us. I walked away from that experience, called my dad, and said, "I know what I'm doing with the rest of my life." I feel very grateful that it was love at first sight with regard to pediatrics.
Why have you dedicated your career to studying pediatric palliative care?
While in graduate school in England, my mother's much older sister — who was like a grandmother to me — became ill with pancreatic cancer. I wound up going home and taking care of her for two months before she died. Then, right before I started pediatric residency training, my sister was diagnosed with acute myeloid leukemia. I was set to go out to Seattle for residency and that news turned my world upside down. I scrambled to try to stay in the Philadelphia area, where my sister lived, but it wasn't possible. For a year, I flew back and forth once a month to be with her. She entered remission but then relapsed and died nine months later. Both of those experiences were wakeup calls for me in terms of coming to grips with what somebody needs when they are very, very sick with something that ultimately cannot be cured.
In Seattle, I was committed to taking care of children with chronic complex problems. From day one of my internship in the continuity clinic, I was allowed to cultivate a panel of patients who were medically complicated. One day, my clinical mentor stopped me in the hallway and said, "You might get a call from the emergency room one day that one of your patients has died. Are you ready?" I initially panicked because I worried it was because I was not a good enough doctor, and I had to figure out how to prevent that from ever happening. His point, though, was that no matter how good I was — no matter how good anybody was — the conditions of these patients were life-shortening. He was trying to get me to think about my own self-care, but it also got me thinking about the fact that I was not addressing with the families of children what their palliative care and end-of-life care needs might be.
What gaps did you identify in the field of pediatric palliative care research?
That experience in the mid-1990s was my gateway into starting to use the concepts of palliative care that had been developed in the adult world but had not been translated into the pediatric world. In the past, doctors often referred their terminally-ill pediatric patients based on the "sainthood" model, meaning they'd say, "I am going to send this patient to this doctor — she or he's a saint and will take care of everything." That, to put it mildly, was not a good model to operationalize and go to scale.
I started to think much more systematically not only about complex care but also palliative care. After I finished residency in 1998, I was selected to do a two-year research training program in the Robert Wood Johnson Clinical Scholars Program. I devoted that time to thinking this through as a clinical investigator and also in terms of program development and evaluation. I was fortunate to be part of the interprofessional group of clinicians in Seattle who mounted one of the first pilot demonstration projects of a pediatric palliative care program, and that made a world of difference for the rest of my career.
What do you wish more people understood about pediatric palliative care?
We always wish we could take all children and make them well, and that is our ultimate goal. But, we need to live in the here and now, and the current reality is there are many conditions that either inevitably prove to be fatal or that increase the risk of mortality to such a degree that it is much less likely the child will reach adulthood.
The question then is: How can we help these children and families live to the best extent possible? Yes, palliative care is inclusive of end-of-life care, but the real purpose of palliative care is to help people live well before they die, not just to focus on the dying part. To make sure we have taken care of pain symptoms as best we can, to think through and collaborate on the coordination of care, to partner on making medical decisions large and small, and to support the emotional and spiritual issues that arise for the parents and caregivers as well as the patient — that is the work of pediatric palliative care.
One of our studies looked at what it is like to be a pediatric palliative care patient in terms of their experiences over time. The biggest surprise that people have reading this study is that the typical child we care for lives for years, not hours, days, or weeks. Pediatric palliative care is often something a child might benefit from well before they get close to the end of their life, and multiple studies have now shown the average life expectancy after beginning palliative care is well in excess of a year.
What are you interested in studying next?
One of the research areas that I'm committed to is the care of children with medical complexity.
This is an increasingly prevalent group of children, and their needs are increasing, and their families' needs are increasing. We are getting much better at preventing children from dying, and that is a lovely thing, but we often cannot fully cure them. They become reliant upon medications, medical technology, and repeated interventions, and they remain medically complex because of that reliance. So, we have a couple of lines of work trying to do better by them. We also continue to do all the work we have done to date in ethics, but perhaps with more attention to even more rigorous ways to study how we can engage more effectively in ethically challenging situations.
What does the APS award represent for you?
I am incredibly grateful for and humbled by the award, but the greatest reward has been all the personal and professional experiences I talked about, all the patients and families I have cared for and gotten to know. It is the people I have worked with, and the things that we have been able to address and change together. That is what I feel most grateful for.