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.
As illness progresses and it becomes increasingly unlikely that cure or even prolongation of life is possible, the palliative care team's goal is to be sure that your child is physically, emotionally, and spiritually comfortable. Because untreated symptoms can cause fear and anxiety, the palliative care team usually includes:
- a physician or nurse who is an expert in prescribing medications or other symptom-relieving measures,
- behavioral health providers who can help answer your child's questions and help you to talk together as a family about what is happening. The behavioral health provider can also help you, as parents, to cope with your emotions so you can best help your child feel comfortable and confident, and
- chaplains who are available to help you fill your child's, your own, and your family's spiritual needs or who can help arrange for someone from your own faith community to meet with you.
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.
When your family begins working with a palliative care team specifically about goals of care and other end-of-life issues, you will begin thinking about what you want for your child and your family in the time that is left. You may wonder:
- Where do we go from here?
- How can we best take care of our child now?
- Who will help us?
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.