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Palliative care specialists are medical professionals who work with your child and the healthcare team to help make your child as comfortable as possible. Palliative care teams are called by different names at various hospitals such as advanced care team, supportive care team, comfort care team or quality of life team.
At some centers, the palliative care team works with a patient and family to manage comfort throughout treatment. At other centers, the palliative care team begins to work with families at the point where you are now, when curative treatment is no longer feasible.
These professionals can discuss end-of-life issues with you such as managing pain, which doctors or nurses to call with different types of questions, what to expect as your child approaches death, what arrangements need to be made before your child dies, and what will happen afterward.
It is also important to recognize that your child may have strong wishes about what he or she wants to do with family and friends and many questions about what will happen after death. Some children may want to give some of their possessions to others, write a letter or a poem or compose a song, or decide what they want their funeral to be like. These are painful discussions, but they can actually help everyone to know the child’s wishes and to reassure the child that you will try to fulfill those wishes.
The palliative care team can help you with all of these questions and discussions.