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Expert Stresses Importance of End-of-Life Care in Pediatric Oncology

Angelica Welch
Published: Thursday, Jun 14, 2018

Justin N. Baker, MD

Justin N. Baker, MD

While the field of pediatric oncology has progressed rapidly over the past decade, about 20% of children with cancer will still die from their disease. Justin N. Baker, MD, chief of the Division of Quality of Life and Palliative Care at St. Jude Children’s Research Hospital, said that end-of-life care for these patients and their families is critical.

“There is an understanding now that how children die is incredibly important,” Baker said. “Exquisite detail of their symptom management, and really strong relationship-based care that requires excellent communication skills makes a tremendous difference.”

It takes a multidisciplinary approach to give a patient who is terminally ill and their family as many good days as possible, Baker emphasized. This team includes medical oncologists, palliative care specialists, nurses, and spiritual leaders. As an oncologist, Baker said he recognizes that he cannot provide all that care on his own—it is a team effort.

In an interview with OncLive, Baker discussed the benefits of a holistic approach to end-of-life care in pediatric oncology, as well as the importance of teaching palliative care to the next generation of oncologists and hematologists.

OncLive: How have you seen symptom management and end-of-life care in pediatrics evolve over the last 5 to 10 years?

Baker: We realized that integrating expertise into the primary oncology experience is critically important. When you think about quality of life, and how you can make every day the best day it could possibly be—it is done through integrating high-quality symptom management and communication. 

The evolution of symptom management and end-of-life care has been fairly extreme over the last 5 to 10 years. We know that it makes a difference in the bereavement period for the parents, and for the children as they are dying. It makes a difference for the oncology team, because they can feel better equipped to care for this very complex patient population that unfortunately, we still have. About 20% of children with cancer still die, and we have to be experts to be managing those kids as well.

What benefit does a multidisciplinary approach serve in palliative care for children?

Palliative care for children is inherently multidisciplinary. Anybody that tries to practice it themselves is really not practicing palliative care. Palliative care takes a holistic approach, and in order to take a holistic approach, you need a holistic team. That holistic team needs to address issues related to suffering in general.

A great way to think about it is that, much like the enemy of oncology is cancer, the enemy of palliative care is suffering. I may be able to address some physical symptomatology that is causing suffering, but if you are thinking about psychosocial distress, spiritual and existential distress, or psychological distress, I could never do that by myself. That would be ridiculous to think that I could address all of those issues. 

The reality is, we have to have a team approach that looks at all the different angles. We have to take a holistic approach in caring for patients, but also for the family. Imagine a sibling walking through this—it is critically important to address the issues of the family as a whole. How can we help them with reintegration into the community? How can we address the needs of that particular child? Potentially, we could discuss end-of-life care with that child who is dying.  That is very complex—I could never do that as a physician. I need to lean on the entirety of the team. I could maybe mobilize efforts and advocate, but it must be a team-based multidisciplinary approach. 

What would you like medical oncologists and hematologists to know about palliative care for children?

Palliative care is really coming of age in pediatric oncology right now. What is now known is that if we integrate palliative care early, then it is much easier for patients and families to emphasize things like quality of life and good days. It is much better than having this “hard stop” during curative treatment to switch to palliative care. It is not good for the oncology team, the palliative care team, and most of all, it is not good for the patient or their family.

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