Profiles of Late Style: Dr. Chris Feudtner

Dr. Chris Fuedtner is a pediatrician, epidemiologist, historian, and ethicist at the Children’s Hospital of Philadelphia (CHOP). He specializes in working with children with significant medical challenges and their families. (Photographs by Lowell Brown)
“People talk about how you’re going to die, but it’s how you’re going to live up to that point.”

As a palliative care researcher and physician very much in his mid-career, Dr. Chris Fuedtner is an interesting choice of subjects for a series on Late Style. But his research, and the patient population Dr. Fuedtner serves, reveals insights into what inspires people to create, explore, and live life to the fullest — even when the end of that life is within view. Through years of working with chronically ill children and their families, the lessons he’s gleaned about life and death are an important contribution to our exploration of Late Style.

The Creative Evolution of a Career

We rarely think of physicians as having a “style”, let alone pushing out creative boundaries in their practice. Yet Late Style expressions in scientific disciplines are present and can be seen in the way scientists master their craft, explore new frontiers, and take risks.

Fuedtner’s own journey illustrates many of these elements. He explains that while his work is specialized, “there’s still a lot of room for innovation, discovery, and the further development of style. As a pediatrician my whole career has been about taking on related-but-new challenges.”

Fuedtner started out as a general pediatrician but soon shifted his focus to caring for children with complex, chronic illnesses. At that time, palliative care for children was an unexplored frontier. “I began to realize that some [of my patients] were ill in a way that they would never recover [and] I backed into the reality that I needed to take what they were facing seriously. I’ve moved in a new direction, given what I was discovering, both as a doctor and as a scientist and feel very fortunate that my research and my clinical practice worlds are like a braid — they go back and forth, supporting each other and propping each other up.

The Late Style element of embracing risk is also evident in Fuedtner’s research. He explains his career path was marked by a willingness to step into the unknown. “I, self-consciously, was willing to take on things I thought were important and were new and innovative — but were almost inevitably going to be riskier. We did not have a well-worn path of how to study some of the things that I’ve tried to study… [but] I’ve been surrounded by mentors who have been willing to both be encouraging and supportive.”

Focusing on a Life Well Lived: The Intersection of Music and Medicine

Like many of the great composers, Fuedtner is adamant that his palliative work is not about death, but rather how to “live well” within all the constraints and challenges of life. Music often explores the question of how to make sense of a life that is going to come to an end? Fuedtner reflects, “Maybe people are self-aware of it, maybe they’re not, but it’s not surprising that, artistically, this theme comes up often in music. [Composers] have lost a child, a spouse, a sibling, and their work is dominated by grief…Think of Britten’s ‘War Requiem’…The question of mortality isn’t simply that I’m going to die. It’s also: I have lived and what does that mean? Does death negate the value of everything I’ve done up to this point?”

Fuedtner explains that the palliative course he guides his patients through asks similar questions about how they want to experience life: “What would a good life look like before you die? What would it look like for your child?’ People talk about how you’re going to die, but it’s how you’re going to live up to that point…It’s really about living.”

Once again, Fuedtner ties these ideas back to music, “There are some compositions that end very despairingly, but by and large most of them will have some form of solace. But that solace may not be enthusiastic…think of Shostakovich and some of the ends to his symphonies where there’s almost a profound sense of loss and then a very simple folk melody that ends the symphony. I don’t know what Shostakovich was thinking, but I can say my reaction…is that simple things matter more than we give them credit for. There is a preciousness of simplicity.”

Fuedtner continues, “There’s a whole other literature of musical endings that are more about salvation and a sense of community. Brahm’s ‘Requiem’ is remarkable for its sense of community strength and mixed grief. Maybe that’s why, when we as a society face terrible tragedies, we often have memorial ceremonies that feature music; it’s the strength we can draw from each other when we’re in pain.”

This process is certainly true of his palliative care work. He explains that for many of his young patient’s families, the challenge becomes accessing this strength in the midst of pain. It’s about finding “the courage to confront the adversity that the child is facing, despite the unfairness or the injustice. They have made peace with that somehow but it’s still very, very hard. The question is how do you help that child, to the degree you can, live the best life that he or she can…even if that life is going to be very short.”

Perhaps that is the great lesson of these Late Style Profiles. None of us really know for certain how many days we have left. The challenge is how to live our lives with intention and purpose. And as long as we have breath, there is an opportunity for creation, exploration, discovery, and innovation.

The Profiles of Late Style blog series is part of the Departure and Discovery Project led by the Philadelphia Chamber Music Society which is supported by The Pew Center for Arts & Heritage. Over the next few months, we will be featuring weekly stories that explore a whole range of perspectives on late style and its impact as an altogether universal human experience.

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