Use the term “palliative care” and most people’s thoughts will turn to hospice. For many years, palliative care described end-of-life pain management for people with terminal illnesses.
That is often still the case, especially for adults.
But for pediatric patients, palliative care is also about providing a support network for patients and their families as they manage both death and life with complex chronic illnesses.
The World Health Organization (WHO) makes that distinction clear in its definition of pediatric palliative care:
"Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family. It begins when illness is diagnosed and continues regardless of whether or not a child receives treatment directed at the disease.”
Violet M. Borowicz, M.D., F.A.A.P., a pediatric hematology and oncology specialist at Carilion Children's, believes that the 450,000 infants and children in the U.S. who live with chronic, life-threatening conditions would benefit from the holistic approach to care. She is developing a pediatric palliative care program at Carilion using the WHO model.
“I want to change the way people see palliative care,” she said. “It encompasses everything involved with quality of life, for patients and their families, throughout the course of their illness. That also includes bereavement support for families who do lose their child.”
Dr. Borowicz’s palliative care patients are referred to her by Carilion's pediatric staff and the neonatal intensive care unit (NICU) Palliative Care and Pain Committee. The committee includes pediatric specialists, a licensed clinical social worker, hospital chaplain, parent educator, child life specialist and nurses who have undergone specialized training from the End-of-Life Nursing Education Consortium (ELNEC) through the American Association of Colleges of Nursing.
This integrated care team works together to ensure that the patient, parents and siblings have access to respite care and other community resources, and that they feel informed and supported throughout the course of their illness.
“I don’t manage their disease,” said Dr. Borowicz. “Other Carilion Children’s pediatric providers and subspecialists do that. I make sure they are listened to and that they are getting what they need in terms of overall well-being and quality of life for the child and their family.”
Crucial to success is engaging the palliative care team early in the process.
“It is important for families to have an ongoing relationship with a provider they trust,” said Dr. Borowicz. “It makes those difficult conversations and decisions easier for them.”
Consultations can start as early as prenatal care during a high-risk pregnancy, and care extends as long as the patient or the family needs it.
“We want every child to have as normal a life as possible,” Dr. Borowicz added.
Pain management does play an important role in pediatric palliative care. A comprehensive program offers both pharmacologic support and non-pharmacologic interventions to manage pain. These include:
- Physical measures: cuddling, massage, heat, ice, physical and occupational therapy
- Cognitive-behavioral measures: guided imagery, hypnosis, distraction, storytelling, music and art therapy
- Healing touch: Reiki and acupuncture
Other interventions can address individual symptoms, such as aromatherapy for nausea and low lighting and music for delirium.
For patients with lifelong illnesses, many of these interventions become tools they can use to manage their symptoms when they are away from the hospital.
Advice for Parents
Dr. Borowicz offers the following advice to families of patients with chronic or life-threatening illnesses:
- Avoid Google. Statistics lack the context specific to your child.
- Write your questions down. Too often parents forget their questions when they are with the doctor.
- Remember that it’s hard in the moment to see a light at the end of any tunnel, but you never need to feel alone.
For Dr. Borowicz, developing the pediatric palliative care program at Carilion Children’s is a labor of love. Angela Alderman, R.N.C.-N.I.C., B.S.N., sits on the NICU committee and sees the results of that dedication every day.
“When you have nine physicians and you’re trying to juggle that and your other child and your work and you might need respite care, it’s nice to know that you are not by yourself,” she said. “Dr. Borowicz is not just there when things are ok, she’s there when the families need her. Pediatric patients who have taken advantage of palliative care have definitely benefited from it.”