Parents are partners with doctors in decisions about their child's end-of-life care.
Even though new and better treatments have increased the chances of a cure or remission, some types of childhood cancer do not get better. When a child's cancer does not get better or comes back, parents may not be sure about whether to continue treatment and, if so, what kind.
For more information from the National Cancer Institute about communication in cancer care, see the following:
When Someone You Love is Being Treated for Cancer
Young People with Cancer: A Handbook for Parents
Facing Forward: When Someone You Love Has Completed Cancer Treatment
When Someone You Love Has Advanced Cancer: Support for Caregivers
Parents who are caring for a child at the end of life need a lot of support that includes family members and the child's health care team. The health care team can help parents understand how different types of treatment can affect their child's quality of life. Parents have to decide if they want their child to continue to receive treatment even if it is not likely to affect the cancer. They also have to decide if they want their child to take part in decisions about end-of-life care.
Parents have reported that they find the most support from cancer treatment doctors who:
Give clear information.
Communicate in a caring and sensitive way.
Communicate directly with their child as needed.
Let them know what to expect as their child nears death and help them get ready for it.
There may be services that can help with end-of-life care for children.
Some medical centers that specialize in cancer care for children have services that help with palliative and end-of-life care. These support services may include:
Pediatric palliative care team.
Psychological and social support team.
Complementary and alternative medicine (CAM) services.
Other services that are helpful but may be harder to find include:
Programs for siblings of children who are receiving end-of-life care.
Hospice programs that accept children who are still receiving chemotherapy.
Clinical trials that combine complementary and alternative treatment with standard treatment.
Even when palliative care and end-of-life care support services are not available, cancer treatment doctors may suggest other options to parents. If parents have home health care support, many are able to plan and give their child end-of-life care at home. This can have the following positive effects:
The child may not need to be admitted to the hospital as often.
The parents feel that they have more control and are better able to accept their child's death.
If the child does die in the hospital, he or she is less likely to die in an intensive care unit, which often uses invasive treatments.