Pediatric Palliative Care is an Important Care Component for Seriously Ill Children

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BY: Sarah Friebert, M.D.

Editor's Note: This column features perspectives from guest physicians. Submissions are welcomed! Send column ideas to: lhenrichsen@hospicewr.org.

In a perfect world, no parent would have to experience the serious illness or death of a child. But it is not a perfect world and 53,000 children die in the United States each year. For these families, as well as the families of the more than 500,000 children suffering from life-threatening conditions, a pediatric palliative care (PPC) team can help enhance the child's quality of life, help parents make informed decisions about treatment options and help address the family's psychological, spiritual, emotional and practical needs. Working in concert with other involved providers, a PPC team offers comprehensive, interdisciplinary, family-centered, team-based care for patients of all ages, from prenatal to young adult.

Palliative care is a growing subspecialty in pediatric medicine. The first hospital-based PPC began about 15 years ago, and can now be found in a majority of children's hospitals. Most children referred to palliative care programs have life-threatening neurological or neurodegenerative conditions, trauma, complications of prematurity, chromosomal/genetic abnormalities, complex congenital heart disease, cancer, or metabolic diseases.

A common misconception is that there is no place for palliative care until all curative, life-prolonging options have been exhausted. In fact, rigid distinctions between curative and palliative interventions may hinder appropriate provision of palliative care, and many treatment options fall into both categories.

At or shortly after diagnosis, palliative care physicians and team members meet with the child and family to identify their goals and develop an individualized plan of care. In addition to management of pain and other distressing symptoms, the PPC team assists the family in goal-directed decision making, care coordination, management of transitions, anticipatory grief/bereavement, family coping and resiliency, and many other aspects of being or caring for a child with a life-threatening condition.

The relationship between the PPC team and the family can extend for months, years, or even decades. Sometimes children even graduate from PPC! When children do die, the palliative care team follows up with families at regular intervals through mailings, individual phone and in-person counseling, group support, remembrance services, and anniversary/birthday cards.

In short, PPC is not just about death and dying. The American Academy of Pediatrics has stated that when a child is facing a serious illness, the goal should be to add life to the child's years, not simply years to the child's life. As the mother of one of my patients put it, "When we first heard about PPC, we thought it meant that everyone had given up on my son. We soon learned otherwise, and now we don't know what we did before you came into our lives. Who wouldn't want this kind of care?"

About Dr. Sarah Friebert

Sarah Friebert, MD, FAAP, FAAPHM, founder and medical director of Akron Children's Hospital's Haslinger Family Pediatric Palliative Care Center, is board certified in Pediatric Hematology/Oncology and Hospice and Palliative Medicine. She is Professor of Pediatrics at Northeast Ohio Medical University, a past recipient of the Miracle Maker Award from the Children's Miracle Network, and the inaugural holder of an endowed chair ​created in her name.

Dr. Friebert also serves under contract as Hospice of the Western Reserve's Pediatric Medical Director.

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