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.”
Frequently Asked Questions
1. What is palliative care and when is it provided?
- Palliative care is a key part of treatment for your child and can prevent or manage the symptoms related to your child’s illness as well as the side-effects of many primary medical treatments. It can give relief from physical discomfort and emotional distress, and enhance quality of life.
- It can be helpful across a range of serious illnesses or conditions and it may combine pain and other symptoms management with psychosocial support such as spiritual support, counseling, and social services.
- Palliative care is available at any time during an illness, and its availability does not depend upon whether or not your child’s condition can be cured.
2. 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.
3. How can palliative care help my child and our family?
- The purpose of palliative care is to help ease distressing symptoms that your child may have such as pain, breathing difficulties, nausea, or others.
- Palliative care includes planning for your child’s future needs, support for family members, including your child’s siblings, and coordination of your child’s care with all of their health care providers.
- Your child’s primary health care provider can help you work with other care providers to include palliative care services for your child.
4. Who provides palliative care?
- Palliative care is provided by a team of professionals based on your child’s needs. Members of a palliative care team may include doctors, nurses, social workers, pharmacists, chaplains, counselors, and nutritionists. The palliative care team combines managing physical symptoms such as pain, with other types of support, such as emotional, psychosocial, and spiritual support, into every part of treatment. Team members spend time with you and your child to fully understand your needs.
For more resources about pediatric palliative care, please visit:
American Academy of Pediatrics: Palliative Care for Children
Children's Hospice and Palliative Care Coalition
Initiative for Pediatric Palliative Care (IPPC)
The National Hospice and Palliative Care Organization’s (NHPCO) Children’s Project on Palliative/Hospice Services (ChiPPS) page
The Center to Advance Palliative Care’s (CAPC) Pediatric Palliative Care webpage
Getpalliativecare.org to find palliative care providers by state
Pediatric Supportive Care for Children with Cancer (National Cancer Institute webpage)