The topic of palliative care for children with cancer is difficult, uncomfortable, and painful - but also incredibly important. We were so glad to see this topic covered in the current issue of the ASCO Post, with an article on recommendations for improving palliative care in pediatric oncology. The recommendations are the work of the St. Jude Family Advisory Council's Subcommittee on Quality of Life and Palliative Care, made up of 14 bereaved parents. Their eight recommendations can be read in full here, but we've summarized them for your convenience:
- Ensuring that children receive the best possible treatment of disease and have the best possible quality of life, always hoping for the best possible outcome: This recommendation stresses the importance of an empathetic, well-educated health care team that individualizes care for each child and their family's unique circumstances and needs.
- Providing effective symptom control: Comfort and pain management along all steps of a child's cancer journey is of critical importance, including the right to access to experts in pain and symptom management.
- Providing relationship-based care: Health care providers who recognize and respect treatment's impact on the whole family unit are vital.
- Empowering families with useful and reliable information: "We need health care providers to be honest about the possibility that our children may die so that, while there is still time, we can have meaningful conversations with our child and other family members about what to expect if the cancer treatment does not work."
- Supporting children and families in the process of making difficult care decisions: It's critical for health care providers to help families make care plans reflective of their values and to respect that family's choices, especially in end-of-life decisions.
- Facilitating care coordination: A child's complex care should be well-coordinated and organized among the many care providers and specialists involved.
- Ensuring that children with progressive and incurable illness experience a comfortable and peaceful death: This includes a family's right to choose where a child dies, whenever possible.
- Providing bereavement support for surviving family members and hospital staff: This recommendation includes easy access to grief and bereavement support for family members, provider education on bereavement communication, and bereavement support for medical staff.
We thank the parent council for their dedication and strength in the creation of these recommendations, and we hope they receive the attention and discussion they deserve.
Our family resources webpage has a section on bereavement resources that we encourage families to visit. Do you know of other resources we should add to our list? Please let us know in the comments.