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

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.

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

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.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.

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

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.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.

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

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. 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.

With all these advancements, what is left to tackle in this space?

Integration is the key. Integration is happening earlier in most institutions. That is fabulous for patients, families, and palliative care teams; it is fabulous for pediatric oncology teams, as well. To try to take all of that on themselves is just not feasible. As a pediatric oncologist, I should be doing all my own palliative care work for my patients, but that is just too much. We have to come together hand in hand, and we have seen that. Right now, there is tremendous momentum and success that has been demonstrated at a variety of institutions including St. Jude Children's Research Hospital. We have shown that these partnerships make a difference in our patients’ lives, and their families’ lives.The next 5 to 10 years in pediatric oncology are going to be critical. The way that I see this going is that the palliative care team will become a part of the routine oncology team. Right now, we don't have the resources to do that. No institution can truly give every single oncology patient a palliative care team. However, that is going to be a critical space that we will move into.

Is there anything else that you would like to add?

Pediatric palliative oncology will become a part of the routine care, and just as much part of the team as a social worker, chaplain, nurse practitioner, or a general oncologist. Included in that space will be the pediatric palliative care subspecialist. That means we may come in and out of care. We certainly aren't going to be seeing that patient 2 to 3 times per week most of the time, but we will be available immediately for any concerns, issues, additional layers of support, and be there right from the beginning. That is where things are going.The critical nature of palliative care demonstrates that we must bring up the next generation of oncologists to understand that in pediatric oncology, the best way to care for our kids and families is an integrated palliative care approach. That is why I feel so fortunate to be the hematology/oncology fellowship director at St. Jude Children's Research Hospital. As both the fellowship director and the palliative care director, I am able to intertwine that approach so that our hematology/oncology fellows are coming through the palliative care team as a required rotation.

I would love to see the hematology/oncology space move to where these fellows are required to do palliative care rotations so that they can get that other flavor and feel, and put on that “palliative care hat” as they are taking care of these patients. They will take better care of their own patients the more holistic or palliative approach that they take. That is a critical next step.