Palliative Care – Providing On Going Support for Children with Complex Chronic Illness

Palliative Care – Providing On Going Support for Children with Complex Chronic Illness

By Elisha D. Waldman, MD, Associate Chief of Pediatric Palliative Care

When I used to practice primary pediatric oncology, people would often ask how I managed to do that kind of work, dealing with kids facing such serious illness. Now that my clinical practice is fully devoted to pediatric palliative care, people often seem even more horrified when they ask how I do it. When people ask that, what they mean is how can I be around dying kids all the time. An important part of the answer is that people misunderstand what is meant by pediatric palliative care. While it’s true that end of life care falls within our area of expertise, most of the work we do is actually focused more on ongoing support and exploration of goals for children with complex chronic illness. Put differently, I would define pediatric palliative care as an interdisciplinary approach to providing support for children and families facing potentially life-limiting illness regardless of stage or prognosis. That means that we do different things for different families (and often that role changes over time, as an underlying condition gets worse or better). Sometimes it means we help out with complex symptom management such as pain, anxiety, or nausea; sometimes it means we help with difficult decision making (for example around interventions like surgical procedures or high-risk therapies); and sometimes it just means we help families think about what it means to care for a child with complex needs over the long run. All in all we are an extra layer of support, the aim of which is to ensure that patients and families are receiving the best care possible that is in line with their goals and values.

Another mistake that people often make is thinking that palliative care is itself a treatment pathway, that they have to choose between palliative care or disease-directed therapy. Nothing could be further from the truth. Pediatric palliative care is concurrent care – it is an approach that provides support for children and families even while they are still hopeful and pursuing disease-directed therapies. Indeed, this concept is enshrined in the Affordable Care Act, which contains a clause appropriately known as the concurrent care clause. This specifies that children on Medicaid or CHIP, the Children’s Health Insurance Plan, are guaranteed access to palliative care and hospice services even while continuing to receive care from other specialists. In fact, we are best able to serve our families (not to mention the other clinical teams caring for them) when we are introduced early on in care, while there are still choices to be made, and not late in disease progression when all we can really talk about is end of life care.

I sometimes miss being a primary oncologist. It was a challenging and satisfying field to work in, with many successes. But being a pediatric palliative care practitioner has really been a gift – being allowed into the lives of children and families dealing with extremely complex and scary conditions and helping them navigate pathways that allow for comfort and meaning, no matter what the ultimate outcome, is an honor, and one that has brought me enormous satisfaction and personal growth.

 

 

Dr. Waldman recently appeared on WTTW Chicago Tonight to discuss his memoir, “This Narrow Space.”

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