What Is Pediatric Hospice and Palliative Care?

Pediatric palliative and hospice care is a model of care that focuses on enhancing the quality of life for infants, children, adolescents and young adults living with a life-limiting illness and their families. The goals of care are similar to those for adults: preventing or alleviating suffering (both physical and psychological), maximizing function and minimizing distress. Unlike adults, however, children may receive both palliative and hospice care alongside therapies aimed at curing their disease. 

Typically, the pediatric palliative care team is made up of a physician who specializes in both pediatrics and palliative care, one or more nurses, a social worker, and a chaplain. The team may also include other support staff, such as an occupational, speech and/or physical therapist. Many hospitals also offer resource counselors who help the family sort through the logistical and financial challenges of caring for a child with a serious illness. 

Large hospitals and those that specialize in the care of children and adolescents may also have a child-life specialist on the pediatric palliative care team. These specially trained professionals are skilled at engaging children in age-appropriate activities that can help them understand and cope with treatments and reduce their anxiety, pain and distress. A child-life therapist may also offer the child developmentally appropriate ways to express difficult emotions through play therapy. 

Caring for the Family as a Whole

Although all care models encompass both the ill person and their family system, pediatric palliative care teams are particularly attuned to the needs of the child’s parents, grandparents, siblings and extended family. The stressors faced by the parents of a seriously ill child are enormous. Not only must they deal with the reality of their child’s suffering and possible death,  they often feel responsible for their child’s illness and are plagued by feelings of guilt and shame. Many families also face financial hardship due to mounting medical bills and loss of income if one parent has to leave the workforce to care for the sick child. 

At the same time, grandparents may be called upon to care for a family’s other children, whether they have the resources to do so or not. Meanwhile, siblings often suffer quietly in the background, struggling with feelings of guilt, shame, fear and abandonment. These children often suffer life-long consequences, such as chronic depression, difficult interpersonal relationships, anxiety and post-traumatic stress. 

The overarching fear of losing the child forever colors all of the family’s actions and interactions when a child is seriously ill. The pediatric palliative care team works with both the individual family members and the family as a whole to minimize distress and give them the support and guidance they need. In some cases, parents and siblings may be referred to a psychotherapist or play therapist for individual counseling. They may also be invited to join support groups, which exist for both parents and siblings as well as the patients themselves. As the child becomes sicker and death appears imminent, spiritual counselors may also help the family engage in meaning-making activities and end-of-life rituals that offer comfort as the child’s life comes to an end. Pediatric hospice also offers ongoing bereavement care. 

Sources

“Pediatric Concurrent Care”. National Alliance for Care at Home. https://allianceforcareathome.org/wp-content/uploads/Continuum_Briefing.pdf 

“Play Therapy in Medical Settings”.  Handbook of Play Therapy. https://onlinelibrary.wiley.com/doi/abs/10.1002/9781119140467.ch24 

“Evaluation of quality of life of healthy siblings of children with chronic disease”. Turkish Archives of Pediatrics. https://pmc.ncbi.nlm.nih.gov/articles/PMC6408193/ 

“Bereavement Care”. CaringInfo. https://www.caringinfo.org/types-of-care/bereavement-care/