My Child May Need Hospice or Palliative Care
Hospice for a child can work differently than hospice for an adult.
You don’t have to understand all the rules before you ask for help.
Ask What Could Help Now
Ask your child’s doctor or specialist:
“Could palliative care or hospice help us now, and would my child have to stop treatment?”
Palliative care can help with pain, symptoms, stress, communication, and support for the whole family while treatment continues.
Palliative care is based on what the child and family need, not on how long the child may live. It can start at diagnosis.
Hospice is for children with a life-limiting illness. Generally, a doctor certifies that the child’s life expectancy is six months or less if the illness follows its usual course. Ask whether your child qualifies.
If You’re Wondering How to Talk With Your Child
Children often sense they’re very sick, even when no one has said so.
Talking with your child about what matters to them won’t make the illness worse. It can help you make decisions that fit them.
Let your child lead. Ask what they already think before you explain, and answer what they ask.
If your child can’t speak, watch for other cues, and ask the care team or a child life specialist to help.
The Conversation Project’s guide for caregivers of a child with serious illness ↗ walks through how to start.
If Your Child Has Medicaid or CHIP
Children under 21 who are eligible for Medicaid or CHIP don’t have to give up treatment aimed at curing the terminal illness in order to receive hospice.
This is called concurrent care.
Ask:
“Does my child qualify for concurrent hospice care, and which treatments can continue?”
Don’t assume you have to choose between hospice support and treatment before someone explains what applies to your child.
Ask About Pediatric Experience
Not every hospice regularly cares for children.
Ask:
“Do you care for children my child’s age and with this diagnosis?”
“How many children have you cared for?”
“How will you work with my child’s specialists and treatment team?”
“Who do we call at night or on weekends?”
If concurrent care is involved, ask who will coordinate treatment between the hospice and the other medical teams.
A hospice may be able to serve children but have little pediatric experience. Ask what they actually provide and who will be available when you need help.
If no hospice near you regularly cares for children, ask your child’s hospital palliative care team whether they can work with an adult hospice, advise its staff, or keep following your child at home.
If Insurance Isn’t Medicaid or CHIP
Private insurance plans can have different rules.
Don’t assume the Medicaid and CHIP concurrent-care rule applies to a private plan.
Ask the plan:
“Does this policy cover pediatric hospice while treatment aimed at curing the illness continues?”
Also ask:
- what hospice services are covered
- which treatments can continue
- what needs prior authorization
- which hospices are in network
- whether there are limits on where care can be provided
Some states have Medicaid programs for children with serious illness or disabilities even when family income is too high for regular Medicaid. Ask your state Medicaid agency whether your child may qualify.
If You’re Pregnant or Your Baby Has a Life-Limiting Condition
Some hospitals, palliative care teams, and hospice programs offer perinatal palliative care or perinatal hospice when a baby has a condition expected to be life-limiting before or after birth.
Support may include:
- planning for the birth
- comfort care
- deciding which treatments fit the family’s goals
- memory-making
- support for siblings
- spiritual or cultural needs
- planning for what happens if the baby dies
Ask the obstetric or neonatal team:
“Do you have a perinatal palliative care or pregnancy-loss program, or can you connect us with one?”
If a miscarriage, stillbirth, or newborn death has already happened, ask about pregnancy-loss or infant-bereavement support.
Know Who’s Doing What
A child may have several teams involved at once.
Ask:
- Who’s managing pain and other symptoms?
- Who’s still treating the illness?
- Who do we call first when something changes?
- Who can come to the home?
- Who’s available overnight?
- Who’s coordinating between hospice, specialists, and the hospital?
If you don’t know who to ask, start with the hospital social worker or child life specialist.
For help talking with your child’s brothers and sisters, see What Do I Tell the Kids? →
For support for yourself, see I Need Emotional or Spiritual Support →
Before You Rely on the Plan
Make sure you know:
- which treatments can continue
- which team is responsible for each part of the child’s care
- who to call 24 hours a day
- what the hospice can provide at home
- what to do if symptoms suddenly get worse
- whether the hospice regularly cares for children
- what insurance has actually approved
Helpful Resources
What pediatric palliative care is, how it works alongside treatment, and a provider directory.
Find the state office that can answer questions about Medicaid, CHIP, concurrent care, and programs for children with serious illness.
Free videos and guides from parents and clinicians on decisions, goals of care, anticipatory grief, family life, and end of life.
