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Addressing End-of-Life Issues

Family Matters - Fall 2010

Sometimes the best advice comes from parents themselves. Those who have traveled the cancer journey with their child to the very end have much to offer those who follow.

Recently, a number of parents, faculty and staff from the Supportive Care Team in 
MD Anderson’s Children’s Cancer Hospital wrote a touching and informative guide for those parents whose children are reaching end of life. The result is a booklet called “My Child Isn’t Getting Better – a helpful guide for parents from parents,” which is now available from a young patient’s medical team, social worker, nurse practitioner and child life specialist.

In the booklet, many questions pertinent to end-of-life situations are answered thoroughly and frankly. From where to go and who to talk to when you know that your child is not going to get well to how to keep a dying child comfortable to how to find a funeral home, these difficult questions are covered.

It is also hard to know how and when to talk to your child about dying. Parents may hear verbal cues from their child such as not wishing to continue with chemotherapy or wondering what heaven is like. A child may also make the statement, “I am dying.” All of these cues may tell you that your child is prepared to have a discussion about end of life. The booklet offers suggestions about how to initiate these talks and what to say to your child.

The final pages of the booklet include a glossary of terms related to end of life and a resource list with support groups, websites and books to help grieving parents and other family members.

As the booklet says, “There are no stupid questions.” The most difficult thing may be for a parent to ask for help. The parents who helped compile this information also understand that it is important for caregivers to take care of themselves. Exercise, eating well, rest and more are important during this challenging time.

Above all, listening to what your child has to say and relying on your faith, family and friends will help ease the grief that every parent and family member feels.

The booklet was designed to be a tool to stimulate discussion between the family/patient and health care team. It can be used in context with frank, comprehensive discussion and as a resource tool. If you are a parent or caregiver of an MD Anderson patient and wish to receive a copy of this booklet, ask someone from your child’s health care team for a copy. Otherwise, contact Patty Wells, 713-563-5481.

© 2015 The University of Texas MD Anderson Cancer Center