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.
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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:
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.
There are many important ways to improve end-of-life care for children.
When a child nears the end of life, the whole family needs compassionate medical, spiritual, emotional, and practical support. This includes the following types of help:
Communication that is caring and sensitive to the needs of the child and the family. Communication should be based on the child's age and stage of development.
Palliative care that includes ways to manage pain and other symptoms at the end of life. Medicines and non-drug treatments can relieve pain, agitation, itching, nausea, vomiting, and seizures. Platelet transfusions may be given to help prevent bleeding.
Support for the emotional and spiritual needs of the child and the family that are based on differences among family members and on the family's cultural beliefs.
Bereavement care which may include helping families create memories with the child, such as photo albums or handprints. It also helps the family to know what to expect at the time of death and in the days, weeks, and months that follow. Bereavement support sessions may be offered after the child's death. See the PDQ summary on Grief, Bereavement, and Coping With Loss for more information.
Advance care planning to help the family make decisions about:
Types of treatment to be used.
Whether the family wants the child to die at home.
Whether the family wants hospice care.
Whether a Do Not Resuscitate (DNR) order will be in place.
Whether taking part in decisions would help the child.
Information and advice from the health care team about medical, ethical, and legal issues.