Columbia Children’s Health Establishes Pediatric Palliative Care Program

What is palliative care, and what is its role in pediatrics?

Pediatric palliative care is a pretty new specialty—most children's hospitals do not have a full palliative care program yet. I think of palliative care as, in some ways, a social justice issue. By that I mean that I’ve seen children in the NICU and PICU suffering from really complex medical conditions, and it often seemed like the families and medical team were not on the same page. I would hear from a family that the most important thing to them was feeding or holding their child but the medical team was focused on lab values or other factors that just weren’t relevant to the parent-child relationship. I want to make sure that parents have a voice in their child’s care and really understand why we we're doing what we're doing.

What types of cases are palliative care specialists involved in?

The kinds of conditions that we see run the gamut. We see children born with congenital anomalies or genetic conditions that prevent them from developing into typical children. In those situations we help families deal with bad news and navigate their expectations, and make sure that the child gets the care they need for as long as they live. We're also involved with children or adolescents who suffer traumatic brain injuries or who have received cancer diagnoses, and help parents explore decision-making or symptom management. As children go through chemotherapy, for example, we can help them with pain, nausea, or any other symptoms that they might experience along that process.

How do you spend time with families?

The palliative care team often joins rounds with the primary teams and then sometimes we will spend another hour or so with patient and family talking about what they heard, what questions they might not have felt comfortable asking in front of the larger group, or anything else they're wondering about. So we get to explore families’ different values and what they're thinking about their child.

Are your patients involved in these conversations?

I try to engage every child in the decisions about their care at their developmentally appropriate level. We have the support of child life and people of so many different backgrounds and disciplines who work together with families to help guide those conversations. Together we can always get at different pieces of what makes a child who he or she is, and make sure that their care matches who they want to be.

Why are these conversations important?

Families are beginning to ask for this kind of care, wanting an additional advocate and realizing that they can and should have a little bit more of a say in their child's care. COVID-19 and our involvement in taking care of really sick people during the height of the pandemic here in the city has also spurred a recognition of the importance of having conversations about death and talking about how you want your or your child’s medical care to unfold.

What drew you to this specialty?

When I was younger, I think I romanticized doctors as people who get to know everything about their patients and what makes them who they are, and who then try to shape their treatments to each individual patient. In palliative care I’ve actually been able to find that.

Max Lindeman, MD, is an Assistant Professor of Pediatrics at Columbia University Vagelos College of Physicians and Surgeons, and attending physician for the Pediatric Palliative Medicine Service at NewYork-Presbyterian/Morgan Stanley Children's Hospital.