Where Your Child Can Get Pediatric Palliative Care
Families often first meet the pediatric palliative care team at the hospital or clinic appointment. Follow-up visits can also take place in either of these locations. However, many teams will continue to offer care and support via telephone and home visits once the child is at home.
The home environment can be the most comforting and safest place for a child facing a serious illness. Palliative care at home is often supported with the help of a home nursing agency, a community care agency and the child’s primary physician. Some pediatric palliative care teams even offer families 24/7 access so that they can call day or night with questions.
Marley’s Story
Marley is a four-month-old girl with a twin sister. She was slowly growing and thriving until one day when she began to have seizures and trouble breathing. She was hospitalized and diagnosed with a serious condition related to how her body processes fats and protein. The intensive care unit (ICU) called in the pediatric palliative care team.
Marley’s parents wanted to bring their daughter home as soon as it was safe to discharge her. Along with the neurologists and the ICU team, the palliative care team helped arrange for Marley to have care at home that focused on increasing her comfort. The palliative care doctors worked closely with her home-care nurses and primary neurologist to treat Marley’s symptoms.
During a home visit, Marley’s mom mentioned to one of the doctors, “Once Marley became sick and we realized how serious her condition was, we didn’t think that we would ever be able to get her home. When you are dealing with such devastation, your hope shifts. All we hoped for was to have both of our daughters home, together, as a family.”
Pediatric palliative care teams, like all palliative care teams, focus on improving quality of life for both the patient and the family. This involves managing the child’s symptoms and providing support. The team looks at the whole picture while working together with the primary medical team.
Palliative care is based on need, not prognosis. So getting palliative early in the illness is key.
Search the Palliative Care Provider Directory to find palliative care in your area. Then ask your doctor for a referral.
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