Section on Hospice and Palliative Medicine
Welcome to the AAP Section on Hospice and Palliative Medicine (SOHPM) Web site! The site is under development with new information and resources being added on a regular basis. We invite you to look around and let us know about any additional resources or information that you would like to see.
Pediatric palliative care is care designed to meet the unique and special needs of children living with life-threatening conditions such as cancer, muscular dystrophy, cystic fibrosis, severe brain problems, complications from prematurity and birth defects and rare disorders, among other conditions. Unlike many other forms of medical care, pediatric palliative care recognizes that everyone in the family is affected when one member is ill. Therefore, pediatric palliative care focuses on the needs of the patient and family: parents, brothers and sisters and other members of the members of your suppport system. The focus of pediatric palliative care is to enhance the quality of life for all involved, in large part by preventing and alleviating suffering using the skills and knowledge of a specialized care team that includes doctors, nurses, social workers, chaplains, child life therapists, and others. Pediatric palliative care focuses on pain and symptom management, information sharing and advance care planning, practical, psychosocial and spiritual support, and coordination of care. > Learn more about palliative care
Can Palliative Care Solve the Problem of Providing Complex Chronic Care for Children and Youth With Special Health Care Needs (CYSHCN)? Should it?
For many parents the phenomena of pregnancy and parenthood are ripe with opportunity, hopefulness and fulfillment. When prospective parents receive a diagnosis for their unborn child, things change; their expected path is altered – they encounter new challenges. So it is when parents of infants, children or adolescents receive a life-changing (perhaps life-limiting or life-threatening) diagnosis for their child. They are introduced to new, foreign, and complicated subspecialists addressing scary realities in a medical world populated by high-tech equipment and multiple measures and tests. These domains of health care were never in their plans – never on the map – and they find themselves in need of someone to help them navigate the ‘system’ as well as learn what it exists for – and how it works. It seems that their hopes and dreams of normal parenting are lost. Lost too, it seems, are the expectant opportunities to parent and nurture a child – keeping them safe from the world. Their whole world appears to be full of uncertainty.
The information posted on this Web site is selected for its value and relation to palliative care and does not represent an endorsement or an official opinion or position of the American Academy of Pediatrics.