Empathetic Endings: Dr Ana Lacerda on Navigating End-of-Life Care for Pediatric Patients With Hematologic Diseases

Improving end-of-life care for pediatric patients with hematologic diseases involves raising awareness among health care providers, families, and society about the necessity of palliative care integration from an early disease stage, explained Ana Lacerda, MD, MSc, pediatric oncologist and head of the pediatric palliative care team at the Portuguese Institute of Oncology.

She also described what end-of-life care entails for pediatric patients with hematologic diseases, how it differs from adult end-of-life care, and the importance of aligning end-of-life care with the preferences and values of patients and their families.

Lacerda discussed these topics further during her presentation, "Pediatric End of Life Care," during the session, "Perspectives on End of Life Care in Hematology" at the European Hematology Association (EHA) 2024 Congress in Madrid, Spain.

Transcript

What does end-of-life care for pediatric patients with hematologic diseases typically entail?

End-of-life care for children with hematologic diseases can be very challenging because, often, there is always another line of treatment that can be pursued. So, it's quite difficult to balance that with the logistics of care that these children need, like, let's say blood transfusions that make them hospital-dependent many times.

So, it can be quite challenging for families and for professionals to make the best decision for each child. But they share other problems with children with other types of cancers, and pain and fatigue are the most frequent symptoms to deal with.

As discussed during the session, how does pediatric end-of-life care differ from adult end-of-life care?

Pediatric end-of-life care can indeed be a bit different from adult end-of-life care but in the sense that terminal disease, terminal illness, and death of a child, have a different impact on the whole family and community. We have to pay attention not just to the dying patient, but also to the entire family and community.

Of course, the death of a child is something that is contranatural, so no one is really prepared to address that. It is recognized that it does need a different, maybe higher level of support than the end-of-life of an adult patient.

How can health care providers ensure that end-of-life care aligns with the preferences and values of pediatric patients and their families?

It's very important that health care professionals really strive to align the end-of-life care that they are providing with the patients and families preferences and values. That can be achieved through the early integration of palliative care since the diagnosis, or as close as possible to the diagnosis, building a relationship of trust between families and health care professionals. Also, discussing the advanced care plan and future health care in times of crisis and, certainly, at the end of life.

In your opinion, what areas of pediatric end-of-life care for patients with hematologic diseases could be improved?

Well, certainly for children with hematologic cancers or hematologic diseases, the early integration of palliative care can certainly be improved. So, I would say that the first step would be the recognition from health care professionals, but also families and society, so everyone involved [should recognize] that this really should be a part of the pathway of these children with hematologic conditions.