Awareness and discussion of end-of-life issues is an important aspect of care for any serious illness and helps improve quality of life. Talk to your child’s healthcare team about treatment goals and any concerns you have related to prognosis, treatment outcomes and end-of-life care.
Although treatments for children with cancer have improved, some children do die of their disease or complications related to treatment. Children nearing the end of life have specific needs and concerns that their parents will have to consider. Thinking about your child’s potential future need for medical care and discussing end-of-life preferences may be painful, difficult or uncomfortable. You may worry that discussing end of life undermines hope for improvement and recovery. However, end-of-life planning is about taking steps to live as well as possible every day. Turn to the members of your child’s healthcare team as well as the members of the hospice team, for support and guidance for you, your child and your family.
Choosing To Stop Treatment
At some point, you may need to consider stopping treatment or stopping aggressive treatment for your child’s disease. This can be a difficult choice to make. It may be time to think about stopping treatment when
- Your child has exhausted multiple treatment options without improvement or with continued disease progression.
- You child’s quality of life has declined drastically without hope for improvement.
- Your child is too sick to continue treatment safely.
- Your child says that he or she no longer wants to seek treatment and understands the implications of this choice.
You and your co-parent will be making decisions regarding your child’s future care. People who can be helpful and may be included in discussions include
- Your child
- Members of the healthcare team
- Other close family members
- A spiritual leader
Discussing Death With Children
Children deserve to know if they are nearing death. This knowledge allows children to ask questions, make requests, say goodbye and prepare for death in a way that is comfortable and meaningful for them just as it would be for adults.
Your child's age, maturity, and experiences with death influence his or her understanding of death and dying. You may find it helpful to ask your child what he or she understands about death so you can correct any understandings.
Read the PDF, End-of-Life Care, for strategies and tips for discussing death with your child, including siblings.
- Download or order The Leukemia & Lymphoma Society’s free booklets:
- Hospice Care
- Children and End of Life