Pediatric palliative care is a medical specialty that supports children with life-threatening or life-limiting illnesses and their families. A common misconception is that palliative care is the same as hospice care. And while hospice care is a type of palliative care, not all palliative care is or will be hospice care.
Hospice care begins after treatment of the disease is stopped and centers on treating symptoms at the end of life. Hospice aims to improve the patient’s comfort rather than cure the illness.
Palliative care, on the other hand, can begin at diagnosis and take place at the same time as treatment. It focuses on creating the best quality of life possible for as long as possible. The role of the pediatric palliative care team is to provide care and support for pediatric patients and their families to:
- Understand new diagnoses and changes in their child’s health.
- Minimize a child’s symptoms and pain.
- Help make complex and difficult medical decisions.
- Provide end-of-life and hospice care.
- Navigate grief and bereavement.
The Supportive Care Program at UPMC Children’s Hospital of Pittsburgh provides palliative care for children with life-threatening illnesses and their families. This growing program is leading the way for families to feel seen and heard during a difficult illness journey.
What Does Pediatric Supportive Care Include?
The UPMC Children’s Supportive Care Program provides pain and symptom management, care coordination, decision-making assistance, and spiritual and emotional support to children with life-threatening conditions and their families. These services are provided by their multidisciplinary team that includes nurses, spiritual advisers, social workers, and psychologists.
“We’re a full-service palliative care program, which sets us apart from other programs,” says Scott Maurer, MD, chief, Palliative Medicine and Supportive Care, UPMC Children’s. “We help with pain management, supporting difficult decision-making, coordinating care to help patients at home where they’re more comfortable, managing hospice care directly, and generally making sure everyone involved with these children is on the same page and aware of what’s going on.”
The Supportive Care Program continues to provide support even after a child’s death.
“An important component of our program is our bereavement program,” Dr. Maurer says. “We follow families for a minimum of two years after the death of their child. We host events, support groups, and have distantly bereaved volunteer parents call newly bereaved parents to ensure everyone has support throughout this incredibly difficult journey.”
The bereavement program also extends to children who have suffered the loss of a sibling. A week-long summer camp brings children together to cohort with other children working through the bereavement process.
“We now have a teen support group and have hired a psychologist on our team,” Dr. Maurer says. “We are constantly expanding our programming to help with the psychosocial support of not just the patients we’re caring for, but also their siblings and family members.”
Justin Yu, MD, a physician-scientist whose research focuses on hospice and palliative care for children, has helped the Supportive Care team clarify where patients and their families need the most support.
How Supportive Care Helps Families Outside the Hospital
A major portion of UPMC Children’s Supportive Care Program’s care happens outside the hospital. This includes helping families navigate resources, processes, and systems they may be unfamiliar with.
“We’re always focused on the care we provide at the hospital, but 99% of these patients’ lives are outside the hospital,” Dr. Yu says. “We must address the challenges families are struggling to overcome outside the hospital walls, like a lack of home- and community-based resources and an understanding of how best to navigate the health care system without a medical background, which can be difficult. We are working to simplify these processes.”
Dr. Yu now is focusing his research on the emotional well-being and mental health of family caregivers of children with medical complexities.
“My goal in the next few years is to actually develop and tailor specific psychological interventions to provide better support to improve not just their emotional well-being, but to help these family caregivers find a sense of thriving,” Dr. Yu says.
The support is critical in end-of-life situations. The Supportive Care Program is establishing a new, more compassionate way to care for children and their families.
“The most important value is that people feel cared for,” Dr. Yu says. “We’re not treating a symptom or a disease. We’re treating a child and a family.”
“To actually care about how that family is thriving is the most important value in a good palliative care clinician — to go the extra mile and be invested so that family can truly thrive.”
To learn more about the Supportive Care Program at UPMC Children’s, visit us online.
Editor's Note: This article was originally published on , and was last reviewed on .