Palliative Care: How to Care for Your Child

Palliative (pal-lee-AY-tiv or pal-YAH-tiv) care provides physical, emotional, and spiritual support to children with serious illnesses and their families. Palliative care is not hospice, which is for people who are not expected to recover. It is for someone who has a severe illness and needs support. 

Your child's palliative care team may include doctors, pain-management specialists, nurses, social workers, behavioral health specialists, and other medical providers. They can help improve your child's quality of life and help your family make important decisions about your child's care.

Follow your care team's instructions for palliative care services such as:

• Taking your child to doctor's visits.

• Setting up any physical therapy (PT) or occupational therapy (OT) visits to help them use their physical abilities.

• Scheduling any home visits with nurses or other medical providers.

• Having your child talk to a social worker or therapist to help with stress or anxiety.

• Taking your child to a Child Life specialist to help them understand their illness.

• Taking your child to a chaplain or other spiritual advisor to provide support.

• Having a home health care aide to help your child transition from hospital care to home care and to help with things in the home.

How Families Can Help

• You are an important part of your child's care. Talk to the care team about what you think will make your child's quality of life better. Ask questions if you don't understand something or if you think a different approach could help.

• Spend time with your child. Help them find things that they enjoy doing and that work for their physical abilities and energy level.

Take Care of Yourself

• This is a stressful time for your family. It's important to take care of yourself so you can take better care of your child. It may help to:

  • Join a support group for families with children in palliative care or with serious illnesses.

  • Ask other people — family members, friends, or paid or volunteer respite workers — to take care of your child for short periods so you can refresh your energy.

  • Talk with your palliative care team about ways to cope.

• You have questions about your child's illness or care.

• Your child or anyone in your family needs more emotional or physical support.

Who can get palliative care? Palliative care is for any child who has a serious, complicated, or life-threatening condition. It can be for people who are expected to make a full recovery, live with the illness for their whole life, or die from the illness. Palliative care can be helpful for kids and teens who have a disease like cancer; a neurological condition; or heart, lung, kidney, or liver disease. 

How can I get more information? Talk to your health care provider. You also can research local palliative care services through the National Hospice and Palliative Care Organization online at nhpco.org or by calling 800-658-8898.