Palliative medicine isn’t only for adults.
Millions of American children facing chronic and complex diseases could benefit from palliative medicine and have a better quality of life, according to a new study from the National Hospice and Palliative Care Organization.
The 11-page report, “NHPCO Facts and Figures: Pediatric Palliative and Hospice Care in America,” aims to help palliative care providers, journalists and policymakers better understand the unmet needs of sick children and their families across the nation.
Pediatric palliative medicine helps provide children and their families with patient-centered, high quality comfort care which is often delivered through an interdisciplinary team. The goal of such care is comfort, not cure. It is delivered alongside curative treatments because it can help to alleviate painful side-effects, depression and stress.
The U.S. Department of Health and Human Services reports that the number of children with special health care needs continues to rise, with more than 15 percent (11.2 million) of children 17 and under in this category. More children facing chronic and terminal diseases could benefit from palliative medicine, which is often misunderstood as care for seniors nearing death.
Traditionally, just three-quarters of pediatric patients who die have been thought to be appropriate for palliative or hospice care. However, as palliative care services mature, providers will be better able to provide short-term support to more children. Individuals ages 0–19 accounted for 1.6 percent of all U.S. deaths in 2013.
The NHPCO report was co-authored by Dr. Sarah Friebert, director of the Haslinger Family Pediatric Palliative Care Center at Akron Children’s Hospital in Ohio, and Dr. Conrad Williams, a palliative care physician and medical director of the Department of Pediatrics at Medical University of South Carolina.
There are major differences between pediatric and adult palliative care that providers should understand.
“Children have very different developmental needs and developmental understandings of what they’re going through,” Friebert told Life Matters Media. “Their bodies are different, their chemistries are different, the way they metabolize medications, drugs, treatments are different. It’s much more common to have a million adults with COPD, or a million adults congestive heart failure, or a million adults with dementia or Alzheimer’s, whereas you have one kid with some very strange genetic disorder.”
Providers must also care for a child’s whole family, Friebert said, especially young siblings who may feel abandoned or confused by the situation. Siblings are often “shipped off to grandma’s house,” and they may not see their brother or sister for long stretches of time.
“We know that children do well with routines and boundaries, and often times those things go out the window,” Friebert said. “What we do is try to provide additional support people for siblings, such as child life specialists, chaplains or spiritual care folks, art and music therapists who work with the siblings themselves, so they also have someone on their team. They need a safe place to go to. We embrace the whole family.”
Children with palliative care needs tend to live longer than adults. The average length of stay in Akron Children’s Hospital’s palliative care unit is 1,100 days. Some children die soon after arrival, while others continue working with their team for five years or longer.
“Most people in pediatrics are in it because they care about children and their families,” Friebert added. “It’s a very rewarding thing, to develop those relationships, but it also means there is more risk for fatigue and caregiver stress. It hits you hard. There’s beauty, joy and heartache in the work we do.”