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Frequently Asked Questions:

What is pediatric palliative care?

Pediatric palliative (pal-lee-uh-tiv) care is supportive care for children with serious illnesses and their families. It offers an added layer of support based on a family’s unique needs and preferences. Palliative care involves a team of specialists who focus on ways to enhance quality of life for patients and families.

Who provides pediatric palliative care?

Every palliative care team is different. The team may include doctors, nurses, child life specialists, social workers, chaplains, and counselors. Support may involve art and music therapists, home health aides, nutritionists, and respite care providers.

How does palliative care help children and their families?

A child’s serious illness affects the entire family. Pediatric palliative care can support everyone. Whether a family is having difficulty managing the child’s condition and care or simply wants extra support, palliative care can help. In addition to easing the patient’s pain and other symptoms, it can help:

• Provide emotional support
• Address family concerns
• Communicate with health providers
• Coordinate care and appointments
• Explain terms and care options
• Locate community resources

When can pediatric palliative care start?

Palliative care can help children at any age or stage of a serious illness, from diagnosis forward. It is available at the same time as any other treatments doctors may prescribe and can begin as soon as the child needs it. Care can begin when a health care provider refers a family to palliative care services. The provider may suggest a referral, or the family can request one.

Does my child have to be in hospice care to receive palliative care?

No, your child does not need to be in hospice care to receive palliative care. Your child can receive palliative care in any setting (at the hospital, in an outpatient center, or in your home) and at any time during their illness.

Where is pediatric palliative care provided?

Palliative care can be provided in a hospital, during clinic visits, or at home. If palliative care starts in the hospital, the team can help a child make a successful move home or to other health care setting. Depending on the child’s condition and treatment, the care team may be able to find a nursing or community care agency to support care at home.

Who pays for palliative care?

Many insurance plans cover palliative care. A social worker, case manager, or financial advisor at the hospital or clinic can help families understand their payment options.

NINR Palliative Care Resources:

NINR’s brochure, Palliative Care: The Relief You Need When You’re Experiencing the Symptoms of Serious Illness has general information about palliative care for adult patients. This brochure is available in both English and Spanish.

To read more about the kinds of palliative care research that NINR supports, please visit: http://www.ninr.nih.gov/researchandfunding/spotlight-on-end-of-life-research.

A summary of The Science of Compassion: Future Directions in End-of-Life & Palliative Care Summit is available at http://www.ninr.nih.gov/ResearchAndFunding/scienceofcompassion. Pediatrics was specifically addressed in the “Parents and Clinicians as Partners in Research” session and in a panel presentation from Dr. Pamela Hinds during “Plenary Session 1: Identifying Our Strengths.”

For more resources about pediatric palliative care, please visit:

American Academy of Pediatrics: Palliative Care for Children
pediatrics.aappublications.org/content/106/2/351.full

Children's Hospice and Palliative Care Coalition
www.chpcc.org

Initiative for Pediatric Palliative Care (IPPC)
ippcweb.org

The National Hospice and Palliative Care Organization’s (NHPCO) Children’s Project on Palliative/Hospice Services (ChiPPS) page
http://www.nhpco.org/resources/pediatric-hospice-and-palliative-care

The Center to Advance Palliative Care’s (CAPC) Pediatric Palliative Care webpage
http://www.capc.org/palliative-care-across-the-continuum/pediatric-palliative-care

Getpalliativecare.org to find palliative care providers by state
http://www.getpalliativecare.org

Pediatric Supportive Care for Children with Cancer (National Cancer Institute webpage)
http://www.cancer.gov/cancertopics/pdq/supportivecare/pediatric/healthprofessional

Updated Date: February 4, 2016