What is pediatric hospice care, and how is it different for kids?
At every age and developmental level, kids have unique needs—physically, emotionally, socially, and more. When a child, teen or young adult has a serious illness, our pediatric hospice team specializes in caring for them.
HopeHealth physicians Dr. Rebecca MacDonell-Yilmaz, Medical Director of Pediatric Supportive Services, and Dr. Jennifer Ritzau, Vice President of Medical Staff, answer common questions:
What is pediatric hospice care?
Hospice care focuses on the care, comfort, and quality of life of a person with a serious illness who isn’t expected to get better over time. It supports patients of all ages, and their families, as they face some of life’s most difficult moments.
Is hospice available for kids?
Yes. Children and young people up to age 21 receive a special version of hospice called pediatric hospice care. HopeHealth offers this care through our Pediatric Support Services.
How is pediatric hospice the same as adult hospice care?
Just like adult hospice, pediatric hospice care seeks to help a patient live as comfortably and fully as possible. It maximizes a patient’s comfort and provides relief from suffering. It also supports their family.
At all ages,
- Hospice helps with the physical aspects of care by optimizing how a patient’s symptoms are managed, including pain, nausea, fatigue, anxiety and breathlessness.
- Hospice includes emotional and spiritual support for the patient and their family, through social workers, chaplains, and more.
- Physicians, nurses, and nurses’ aides can provide hands-on care and expertise at home, with a focus on empowering the child and family to provide expert and compassionate care.
- Specially trained volunteers provide an extra hand and can offer services like pet therapy, music, companionship and much more.
- Bereavement services offer compassionate support for family members of all ages.
How is hospice for kids different from adult hospice?
When a child and family are facing serious illness, they need a special approach to care, and a great deal of expertise. After all, children are not just “little adults.” They have unique needs—and their parents, siblings and loved ones do too.
Pediatric hospice can serve as an “add-on” to existing medical care, allowing patients to continue with curative treatments.
Unlike adults receiving hospice care, children and young adults can continue getting treatments for their disease while also receiving hospice support. This is called “concurrent care.”
What is concurrent care, and what does it mean for pediatric hospice patients?
In pediatric hospice, concurrent care is when a patient continues curative measures (treatment designed to cure or slow down progression of their condition) at the same time as comfort measures (treatment designed to manage symptoms, but not cure them).
Most of the time, this doesn’t apply to adults. When adults choose to receive hospice support, they usually end curative measures like chemotherapy, immune therapy, dialysis, ventilator support, or physical therapy. Their care focuses only on comfort.
But thanks to a provision in the Affordable Care Act, concurrent care is an option for kids, teens, and young adults up to age 21.
In other words: Up to age 21, patients can continue any and all curative therapies at the same time as hospice care. There’s no need to choose between comfort and curative measures. Essentially, hospice services are an add-on to their existing care plan.
- Kids and young adults receive support from pediatric experts who understand them. Pediatric hospice care is delivered by trained clinicians who tailor services to each child’s age and developmental level, and to the needs of their family.
- Families receive specialized emotional and spiritual support, including for siblings. Our chaplains, social workers and, when appropriate, child life specialists help families cope with the stress of an ill child, honoring and reframing the hopes that a family always has for a child. We focus on the affected siblings, offering them developmentally appropriate support.
- Families receive support and guidance with difficult decisions. Pediatric hospice care is a delicate balance between providing comfort and continuing therapies aimed at prolonging a patient’s life. Our team helps families navigate these complex decisions. We help families weigh options and make informed choices and decide how much to include a child in the decision-making.
- Families gain a partner and advocate in their child’s care. Our hospice team can provide anticipatory guidance about the way we expect an illness to progress, so families are not caught off-guard as conditions evolve and change. Because care of medically complex children and teens usually involves pediatricians and one or more specialists, the hospice team works closely and carefully with the teams who know the child best.
Is there a time limit for pediatric hospice care?
No. Patients are eligible to receive hospice care as long as their physicians determine that they’re still eligible, which usually means their disease is not getting better over time. For children who continue to receive curative therapies, that care can continue for years, or as long as they remain eligible.
You may have heard that hospice care is limited to six months. That’s used as a general timeframe for eligibility, but actual care can last long beyond that. There’s no cut-off as long as a patient remains eligible.
How do I find out if my child is eligible for pediatric hospice care?
Wherever you’re located, you can talk to your child’s pediatrician or pediatric specialist and get their help connecting to a credible hospice agency.
If you’re in Rhode Island or Massachusetts, reach out to HopeHealth at (844) 671-4673 and visit us at our Pediatric Supportive Services webpage. Our Pediatric Supportive Services program specializes in children and young people 0-21 years of age. Most hospice services are covered by insurance, and we work with families who do not have insurance to get you the care you need.
When should I ask about hospice?
Reach out today. For many families, hospice benefits quickly become an important source of support and comfort. The earlier you connect with this care, the better.
We understand how difficult it can be to take this step. Many people put off asking about hospice, especially when it involves a child, because they associate it with death and dying.
Keep in mind that hospice is also about enhancing quality of life. It’s about living the very best life one can live, maintaining hope, providing relief from suffering, and lending support through some of the most challenging times a family can face.
Because of the many unique ways that hospice supports children and their families, we encourage families to ask about it as early as possible. We’re here to help.