In the normal cycle of life, children outlive their parents by decades. When the situation is reversed, and the child is diagnosed with a life-limiting illness or devastating genetic abnormality, deep suffering can affect the entire family, as well as members of the care team.
Pediatric palliative care can help relieve the symptoms and stress of a child’s illness by helping to address the physical, emotional, and spiritual needs of the child and family, with the goal of improving quality of life.
Because advances in healthcare are helping seriously ill children live years longer than once expected, the need for pediatric palliative care providers is growing. Providing truly effective pediatric palliative care, however, requires strong teams educated in caring for and communicating with young patients and their families, experts say.
Building Strong Interdisciplinary Teams
“It takes a village to care for the seriously ill child at home,” said Joan “Jody” Chrastek, RN DNP, FPCN, coordinator of the Pediatric Advanced Complex Car Team (PACCT) at Fairview Home Care and Hospice in Minneapolis, MN, and a recognized expert in pediatric palliative care.
Chrastek is the author of Communication Skills for Pediatric Patient and Family Support, part of a comprehensive online Pediatric Palliative Care curriculum offered by the CSU Shiley Institute for Palliative Care. She recently highlighted the importance of pediatric palliative care as a presenter at “Building the Workforce We Need to Care for People with Serious Illness,” a day-long event hosted by the National Academies of Sciences, Engineering and Medicine (NASEM).
Chrastek said several facts point to the growing need for trained pediatric palliative care providers including:
- The number of children with special healthcare needs is increasing while the number of dying children is decreasing
- More than 3 million children could benefit from pediatric palliative care (PPC)
- Hospital admissions decreased by 32 percent for children who received palliative home care, saving 11 percent in medical costs.
She said healthcare organizations that provide community-based care for people with serious illness must invest in hiring and retaining qualified staff to provide palliative pediatric care.
“Teams don’t just happen – it takes hard work, communication, conflict resolution, awareness of need and adequate funding,” Chrastek said.
Supporting Young Patients and Their Families
At the NASEM workshop, Chrastek stressed the urgency of pediatric palliative care education for clinicians already working in hospice and palliative care programs that typically serve adults. More programs must grow and expand to meet the need by cross training, she said.
To demonstrate the need from a parent’s perspective, Chrastek showed a YouTube video of a mother whose child benefited greatly from pediatric palliative care. Jennifer Wagner faced the unimaginable when her 18-month-year-old daughter, Scarlett, was diagnosed with a terminal neurodegenerative disorder.
When palliative care and hospice was called in, Wagner said, she didn’t know what to expect. “(It was) a very scary experience at first, not knowing who was coming in and out,” she said.
Soon, Wagner said, she recognized the importance of a multidisciplinary approach to palliative/hospice care, and that each team member contributed significantly by relieving her daughter’s pain and easing Wagner’s stress.
“The different roles within hospice – from nursing to chaplaincy to social work – are all very beneficial in different ways,” said Wagner. “The nurses are very supportive of the family and the children going through the process… The chaplains would give the spiritual component, and social workers can provide an entirely different perspective that I didn’t realize would be as beneficial as it was to our experience.”
Chrastek echoed the crucial role of the interdisciplinary team and called on healthcare providers to commit to developing skills that support young patients with serious illness and their families. Quoting Mahatma Ghandi, she said: “A nation’s greatness Is measured by how it treats its weakest members.”
For more information on the Institute’s Pediatric Palliative Care education, click here.