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5 Facts About Pediatric Palliative Care

Pediatric palliative care expert Abby R. Rosenberg, MD, explains how this field of medicine can help provide consistency and support for families navigating a child’s serious illness.

When a child has a serious illness, both the child and their family are bombarded by the demands of the illness — doctor’s appointments, treatment regimens, and difficult decisions to make — all while surrounded by a cloud of uncertainty. Palliative care can be an extra layer of support.

Abby R. Rosenberg, MD Contrary to popular assumptions, requesting palliative care does not mean that a family has given up on fighting their child’s illness. Instead, it means that there are additional professionals on their team who can help guide decisions, offer emotional and spiritual support, coordinate appointments, and manage symptoms.

“These can be the worst moments of people’s lives, and they deserve to have everybody around them providing support,” says Abby R. Rosenberg, MD, Chief of Pediatric Palliative Care at Dana-Farber Cancer Institute and the Director of Palliative Care at Boston Children’s Hospital. “We in palliative care want to help provide that support.”

The Frontline spoke with Dr. Rosenberg to learn how pediatric palliative care helps children and their families navigate life-altering illnesses like osteosarcoma.

Fact 1: Palliative care and hospice are not the same.

Many people confuse palliative care with hospice care, but they are not the same. The goal of palliative care is to alleviate suffering and improve quality of life among people with serious illness. Palliative care specialists are experts in understanding and addressing the pain, symptoms, and stress that comes with such illness. They work with a person’s existing medical team to enhance care by focusing on living their best life for as long as possible. Palliative care can be provided in the hospital, clinic, or home setting.

Hospice care is an insurance benefit that focuses specifically on the care, comfort, and quality of life of a person with a serious illness who is approaching the end of life. Like palliative care, it provides comprehensive care for the patient and the family. A key difference is that patients and families receiving hospice tend to recognize that the illness is not responding to medical treatments as hoped. They and their doctors believe the person with illness has 6 months or less to live if the illness runs its natural course. For this reason, hospice patients and families may choose to forego additional treatments and instead focus on other priorities. Hospice provides support in the home, including pain and symptom management, plus emotional and spiritual support for both patients and families.

Fact 2: Pediatric palliative care goes beyond typical disease-focused care.

According to Dr. Rosenberg, pediatric palliative care aims to support all dimensions of a patient’s identity, since serious illness disrupts well-being in many ways. She lists four main components that pediatric palliative care involves:

Pain and symptom management — Brainstorming pain management approaches with the treatment team
Communication and decision support — Listening to families and helping them make decisions that align with their values
Care coordination — Helping to manage the logistics of various demands of illness
Spiritual support — Beginning the conversation around families’ spiritual needs and connecting them to chaplains who can support further

This support is made possible by an interdisciplinary team of experts who are specially trained in advanced communication and symptom management skills, which typically include:

Physicians
Nurse practitioners and other advanced practice providers
Nurses
Social workers
Psychologists
Chaplains
Child life specialists

“Palliative care clinicians help patients navigate their illness physically, mentally, emotionally, and spiritually for as long as possible,” says Dr. Rosenberg. “We try to meet all of a patient’s or family’s needs from all angles.”

Fact 3. Palliative care specialists seek to improve quality of life.

The ultimate goals of palliative care are to help alleviate a person’s suffering, reduce symptoms, and improve their quality of life over time. “Palliative care helps people live their best life for as long as possible,” says Dr. Rosenberg.

“These can be the worst moments of people’s lives, and they deserve to have everybody around them providing support.” — Abby R. Rosenberg, MD

Oncologists are well-versed in delivering “primary” palliative care — integrating cancer care with palliative care concepts like symptom management and critical communication. When a patient’s or family’s needs become more complex, palliative care specialists can be critical.

“If cancer becomes complicated, if somebody has complex pain or spiritual needs, if their treatment is not doing what we hoped and they are starting to make hard decisions about what matters to them, then the expertise of a palliative care team can become more involved,” says Dr. Rosenberg.

Fact 4: Palliative care providers can navigate tough conversations.

Palliative care specialists are trained to discuss difficult topics with sensitivity and skill. That means really listening to families and helping them understand how to make decisions that align with their goals and values.

“As a palliative care expert, I’m trained to lean in and say, ‘I will go there with you,’” Dr. Rosenberg says. “I am not going to force you to talk about your child’s possible death, but I am going to create a safe space for you because it is probably on your mind. I can be your sounding board. I can brainstorm with you. I can simply listen and tell you that you are not alone, and you are not wrong to be worrying about this.”

Fact 5: Pediatric palliative care can transition with you, no matter your health journey.

No matter a child’s cancer journey — whether they are in remission and moving into follow-up care or the patient’s family is in bereavement — palliative care can be with you. Members of the medical care team and oncologists often shift in a hospital setting, but palliative care can provide continuity to families.

“I think what many people miss when we think about cancer care is the minute-to-minute, night-to-night stress and worry that is cumulative over time,” adds Dr. Rosenberg. “But you don’t have to do it alone. There are people and teams around you who are there to listen and be your extra level of support if you want it.