Primary care for children with special health care needs may include consideration for palliative care services
Children who should be referred for palliative care are those with potentially life-threatening diseases. This diverse group includes children with diagnoses of advanced or progressive cancer, neuromuscular diseases, severe cerebral palsy, acquired brain injuries, severe central nervous system (CNS) malformations, complex and severe cardiac abnormalities, and chromosomal or metabolic abnormalities.
Children with HIV infection, severe immunodeficiency, cystic fibrosis, and severe epidermolysis bullosa also meet the criteria for palliative care. Palliative care for children can and often does include life-prolonging treatments, such as a tracheostomy placement for a boy with Duchenne muscular dystrophy, as well as potentially curative treatments, such as chemotherapy for a child with advanced cancer.In a policy statement on palliative care, the American Academy of Pediatrics states, “Palliative treatments focus on the relief of symptoms (eg, pain, dyspnea) and conditions (eg, loneliness) that cause distress and detract from the child's enjoyment of life. It also seeks to ensure that bereaved families are able to remain functionally intact.”(55) Palliative care focuses on the quality of the life remaining to the child. Palliative care addresses not only the physical symptoms, but also the psychological, social, and spiritual issues of a child who lives with life-threatening or terminal conditions.