Pediatric Hospice: Specialized Care Supports Both Children and Families

More than anything else, Caroline McCardell wants families with a terminally ill child to know there is tremendous support available to them—compassionate, expert care tailored to each family’s specific needs in a time of unspeakable stress and grief.

“Pediatric hospice is a program and philosophy of care for children facing a life-limiting illness or condition who have a life expectancy of months, not years,” McCardell, director of pediatric hospice at Homeland Hospice in Harrisburg, said.

“Pediatric hospice care is still very underutilized … mostly because children are not supposed to be dying.”

It’s a reality McCardell knows on both professional and deeply personal levels. Formerly an adult brain injury rehab nurse, McCardell made the career shift to pediatric hospice after her daughter, Theresa, passed away at age 7. The McCardells received enormous assistance from their local pediatric hospice program.

“Hospice let us stay a family,” McCardell said. “Hospice let us be at home, and everything came to us—all services, all visits, medication, equipment.”

Generally, pediatric hospice serves children from birth to 18 years of age (sometimes until age 21 if the young adult is still monitored by pediatric subspecialists).

Perinatal hospice care is also available in cases where life-limiting conditions are detected in utero. These providers are part of the plan of care before birth and offer symptom management and support after the child is born.

“At Homeland Hospice, the child on hospice is the center of our care. Children and families who must cope with serious illness are our heroes,” McCardell said. “Our family-centered approach is responsive to spiritual and emotional needs, and we work in a flexible manner as the care plan changes.

“It’s a service; it’s a phenomenal resource. And we walk side by side,” she added. “[Patients] don’t have to give up anything. They don’t have to give up their physician. We sort of just join the journey—we don’t want to change the journey.”

Pediatric hospice includes a broad range of support services, from medical care, therapy, and spiritual and dietary counseling to volunteers and certified nursing assistants who help with light housekeeping, errands, personal care, and companionship.

Social workers may be utilized for emotional support and to help the family locate needed resources and services. Registered nurses, certified in pediatric hospice and palliative care, are available 24 hours a day, seven days a week. At Homeland Hospice, in-home relief respite caregivers can also provide up to 40 hours of in-home caregiver relief per month.

And bereavement support is available both before and after the child dies, for as long as it is needed.

McCardell said pediatric and adult hospice programs differ in many ways.

“There is an interdisciplinary team that provides care for children with wide-ranging diagnoses. The team’s understanding of where the children are developmentally and [a child’s] understanding of their illness/diagnosis impacts the plan of care,” she said. “Decision making changes significantly throughout the developmental spectrum.”

Adult and pediatric hospice care also differ when it comes to determining the diagnosis and trajectory of the illness, pain and symptom management, interventions and delivery of care, funding/payor source, education and communication, ethical questions and concerns, and more.

And families who use hospice care don’t have to stop seeking a cure.

“You can opt for full and aggressive treatment while benefiting from the comfort of pediatric hospice,” McCardell said.

Parents often worry about the cost of such services, but McCardell said that after a physician has certified that a child has a serious, life-limiting disease and may be in his or her last six months of life, the Affordable Care Act requires all Medicaid programs to financially support curative and hospice services for children under the age of 21 who qualify in their state.

“That means that, if your child receives benefits from Medicaid or the Children’s Health Insurance Program (CHIP), he or she is eligible to receive hospice benefits while actively seeking curative treatments.”

McCardell emphasized that families do not need to give up their current healthcare providers to begin hospice care—hospice is “another layer of care that focuses on pain and symptom management and understanding individual needs,” she said.

“Families can have concurrent care. The Homeland Hospice Pediatric team will work with your current physician, palliative care team, home health nurses, and other providers.”

Homeland’s program uses specially trained pediatric hospice nurses, who must pass a certification exam as well as end-of-life courses specifically geared toward the pediatric hospice population.

“My goal is for our team to make a difference in the lives of medically fragile children and their families,” McCardell said. “There’s still that stigma that’s associated with hospice, and we really just want to be able to support them even more because it’s already a tough journey.” BW

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Pediatric Hospice Services
Pediatric hospice services include but are not limited to:

Physician – Medical care directed by family’s physicians, with support from hospice team

Nursing Assistance – Registered nurses oversee round-the-clock personal and medical care, light housekeeping, and errands

Medical Needs – Coordination and payment of drugs, equipment, and medical supplies (e.g., hospital bed, wheelchair, oxygen tank, etc.)

Social Workers – Connect the family with resources and services offering emotional and financial support

Respite Care – Frees up family caregivers to attend to personal needs (up to 40 hours of in-home caregiver relief per month exclusive to Homeland Hospice)

Therapy – Physical, occupational, speech, nutrition, art, music, massage, and/or pet therapy

Spiritual Counseling – Chaplains or spiritual leaders provide counsel per the family’s religious/cultural traditions

Volunteers – Transportation, light housekeeping, and companionship, such as reading or playing games with child

Bereavement Support – Bereavement support available for family as long as needed