Introduction to Pediatric Hospice Care
When your child is living with a serious or life-limiting illness, every decision carries deep emotion. You may be navigating complex medical information while also trying to protect your child’s comfort, dignity and quality of life. Pediatric hospice care is designed to provide support during this time, not only for your child, but for your entire family. 
At Compassus, we understand that choosing hospice can feel overwhelming. Many families worry that accepting hospice means giving up hope. In pediatric care, that is not the case. Hospice for children focuses on comfort, symptom management and quality of life while allowing families to continue making the choices that feel right for their child.
Our pediatric hospice team surrounds your child with specialized medical care while also providing emotional, spiritual and practical support for parents, siblings and loved ones. We honor your values, culture and wishes every step of the way.
This guide answers common questions families have about pediatric hospice, from eligibility and insurance to sibling support and bereavement resources. Our goal is to provide clarity and reassurance so you can make informed decisions with confidence and compassion.
What Is Pediatric Hospice?
Pediatric hospice is specialized care for children with serious, life-limiting illnesses. Unlike adult hospice, pediatric hospice allows children to continue receiving curative or life-prolonging treatments while also receiving hospice support. This approach ensures families do not have to choose between treatment and comfort.
Under federal law, children under the age of 21 who are enrolled in Medicaid or CHIP may receive “concurrent care.” This benefit, established through the Affordable Care Act (ACA), allows children to continue disease-directed treatments — such as chemotherapy, dialysis or ventilator support — while also receiving hospice services focused on comfort and quality of life.
Concurrent care is especially important in pediatric medicine because families often want to continue pursuing treatments while ensuring their child receives expert support for pain management, symptoms and emotional well-being.
The primary goal of pediatric hospice is to improve quality of life. This includes managing pain and symptoms, reducing hospital visits when possible and creating opportunities for meaningful time together.
At Compassus, pediatric hospice care is delivered by a dedicated team that may include:
- Pediatric physicians and specially trained nurses
- Hospice aides for daily care support
- Social workers who assist with counseling and resources
- Chaplains who provide spiritual care, honoring your beliefs
- Volunteers offering comfort and companionship
Care can take place wherever your child feels most comfortable, at home, in the hospital or another care setting. Our team works closely with your child’s existing doctors to coordinate care and ensure continuity.
Pediatric hospice is family-centered. That means we care not only for your child’s medical needs, but also for the emotional and spiritual well-being of parents, siblings and loved ones.
Common Questions About Pediatric Hospice
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Eligibility for Pediatric Hospice Services
Eligibility for pediatric hospice typically depends on a physician’s determination that a child has a serious illness with a limited life expectancy if the disease follows its natural course. However, because children can continue receiving curative treatments, hospice eligibility does not require families to stop pursuing other medical options.
A referral can come from your child’s physician, a hospital care team or a specialist. Our Compassus team can also help evaluate whether hospice may be appropriate.
Hospice can begin at any stage when comfort-focused support would benefit the child and family. Early referral often allows families to access additional resources, build trusting relationships with the care team and receive more comprehensive support.
If you are unsure whether your child qualifies, we encourage you to reach out. We are here to answer questions and provide guidance without obligation.
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How Does Pediatric Hospice Care Work?
Once enrolled, your child will receive a personalized care plan tailored to their specific medical and emotional needs. A pediatric nurse typically visits regularly to assess symptoms, provide treatment and educate caregivers. Other team members visit as needed based on your family’s preferences.
Hospice care is available 24/7. If concerns arise in the middle of the night or during a weekend, support is just a phone call away.
The care plan focuses on symptom management, comfort and maintaining as much normalcy as possible. Equipment, medications and supplies related to the hospice diagnosis are typically provided.
The Compassus team collaborates with your child’s existing medical providers to ensure coordinated, seamless care.
The Role of Family in Pediatric Hospice Care
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Emotional Support for Families
Caring for a child with a serious illness is emotionally complex. Parents often carry fear, exhaustion and uncertainty while trying to remain strong for their family.
Our social workers and chaplains provide counseling, coping strategies and a safe space to process emotions. We listen without judgment and walk beside you through difficult conversations and decisions.
Support extends beyond medical care, we help families navigate practical challenges and connect with community resources.
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Involving Siblings in the Care Process
Siblings may experience confusion, sadness, guilt or fear during this time. Including them in age-appropriate conversations can help them feel supported and less alone.
Compassus offers guidance for parents on how to talk with siblings about illness and changes in the family. We also provide memory-making activities and emotional support designed to help siblings process their feelings in healthy ways.
Every family member’s experience matters.
Financial Considerations and Resources
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Insurance Coverage for Pediatric Hospice
Most pediatric hospice services are covered by Medicaid, Medicare (when applicable) and many private insurance plans. Under federal law, children enrolled in Medicaid or CHIP can receive both curative treatment and hospice services simultaneously.
Coverage typically includes nursing visits, medications related to the hospice diagnosis, medical equipment and interdisciplinary team support.
Our team helps families understand their benefits and navigate insurance questions.
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Assistance Programs Available for Families
In addition to insurance coverage, families may qualify for financial assistance programs, community grants or charitable resources.
Compassus social workers can connect families to programs that provide help with transportation, meals, counseling and other essential needs.
We believe financial concerns should never prevent a child from receiving compassionate care.
Navigating Bereavement and Loss
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Grief Counseling for Families
Hospice care includes bereavement support for families after a child’s passing. Grief counseling is available to parents, siblings and loved ones. Our counselors provide individual sessions, phone support and guidance tailored to each family’s unique needs. Support typically continues for at least 13 months following a loss.
Grief is deeply personal. We honor each family’s journey.
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Support Groups for Bereaved Families
Many families find comfort in connecting with others who have experienced similar loss. Compassus offers support groups where parents and siblings can share experiences in a safe, understanding environment. These groups provide community, validation and coping tools during a time when isolation can feel overwhelming.
You do not have to navigate grief alone.