The Pediatric Palliative Care Team
What makes palliative care so unique? Palliative care specialists and other health care professionals with different areas of expertise come together as a team, thinking and acting across boundaries to improve quality of life.
Together, members of the palliative care team take the time to get to know both your child and your family. Because every child and family has individual needs, they may meet and work with different members of the team at different times. One of the team’s main goals is to make sure that everyone considers the family’s situation and how to make their journey a bit easier.
The typical team includes:
Doctor: The palliative care doctor is usually someone with training in pediatrics, who also has experience in caring for children with serious illnesses. In addition to palliative care, he/she may have another area of specialty within pediatrics (such as neonatology or oncology). The doctor’s role is to offer insight into the management of symptoms (such as pain, trouble breathing and nausea), and to guide the team in understanding the medical aspects of the child’s condition.
Nurse Practitioner: The palliative care nurse practitioner plays an important role by managing symptoms and for caring for the entire family. Palliative care nurse practitioners are skilled in guiding families through the complex situations of hospitalization and care at home.
Nurse Coordinator: Palliative care nurse coordinators have knowledge of resources within the hospital and the community. They generally have experience working with agencies that provide children with nursing care, equipment and therapies they need to improve their quality of life. They also have a good sense of how to help other health care providers work together to provide the best care possible for children and their families.
Social worker: Pediatric palliative care social workers help children and their families cope with the trauma of illness. They may help access mental health services for patients, their parents and their siblings. They are also often aware of resources that help with financial and other issues.
Chaplain: Spirituality and faith are a source of strength for many children and families facing serious illness. The chaplain helps to honor a family’s religious or spiritual beliefs as they move through the course of their child’s illness.
Child life specialist: Using play, dialogue, art, music writing exercises and other approaches, child life specialists help children understand their illness. Often they become the child’s “safe harbor” and closest source of support. In addition, child life therapists help brothers and sisters process their own experience of having an ill sibling.
Others: Pediatric palliative care teams may also include others, such as pharmacists, art and music therapists, psychologists, rehabilitation therapists, dietitians, volunteers and more.
Kris, an intelligent, loving seven-year-old boy, was diagnosed a year ago with a form of brain cancer. His parents needed help caring for him during chemotherapy and radiation treatments. Kris’s eleven-year-old brother, Morgan, was really struggling with his sibling’s illness. He was crying all the time and having outbursts in school.
The palliative care team became close allies with Kris’s family. The team’s child life therapist began making regular visits to their home to work with Morgan after school. When Kris was in the hospital, the palliative care doctor and social worker would talk with the family about both their fears and hopes. “No day is easy,” said Kris’s mom, “but to know that we have a team working with us that thinks about all aspects of who we are as a family is such a gift. It helps me sleep a bit better at night to know I can call them with any concern and they will help me figure it out.”