By Maura A. Savage, MSW LCSW OSW-C

Aflac Cancer Center and Blood Disorders Service of Children’s Healthcare of Atlanta

Society is recognizing and celebrating the individual’s right to make healthcare decisions especially as they impact death and dying. Making one’s wishes known allows an individual the opportunity to maintain control, face their own mortality, and hopefully, die with peace and dignity. These powerful goals must be integrated into pediatric care. Just because a child does not have the legal right to make decisions, they do have much to say about living their life, what they want, and ultimately, what it is like to be dying. No child should die isolated or in pain, physically or psychically, because care providers and parents are unwilling or unable to talk about the death process and wishes for quality of life.

One of the biggest clinical challenges is how to help the child have a voice while respecting parental autonomy. A parent’s natural instinct is to protect their child from harmful and scary things. How frightening that after battling a disease so hard, there is no protection from death. Parents can feel that by talking about death, they are talking away hope or somehow, by speaking of it, causing the death of their child. Research and practice shows us that children, even ones who are quite young, have a keen understanding of what is going on with their body. As much as parents try to protect their children, children actually end up protecting their parents.

Talking to kids about death

It is imperative that healthcare professionals use open and appropriate language around death and dying. This open and honest dialogue must first come from the physician. If healthcare providers cannot use the words “death”, “dying” or “die”, how can we expect parents to begin this conversation with their child? We must model that this is an ok subject to talk about. One lesson I have learned over the years is that there is not a family who has a critically ill child that has not thought about the possibility of their child’s premature death. The healthcare provider is not opening a new topic, only giving voice to something already felt.

On the other hand, families cannot continuously stay in this conversation. It is not crazy for a family to talk about impending death and in the next breath, talk about remission. As facilitators of this conversation, we must always respect hope. Do not confuse hope with denial.

Giving parents the opportunity to get more comfortable with the discussion of the potential death will allow them to begin talking with their child about their life and their wishes. While professional staff can and should talk to children, they must not do this without the knowledge and permission of the parents. Information given to children should reflect their developmental level. It is interesting to note that more often than not, conversations about death are initiated by the child. I think of a six-year-old girl with relapsed leukemia. It was becoming clear that her disease no longer responded to medical treatment. Her parents were reluctant to talk with her. It was the beginning of November. This child drew a picture of a table in the sky. On the table was Thanksgiving dinner and at the table sat the child and Jesus. It became very clear that she was trying to let her mother know that her Thanksgiving dinner would be in heaven. The mother was finally able to discuss with the medical team her child going home on hospice and discussing a peaceful death.

Giving children control over their medical wishes

Facilitating the conversation between parent and child can allow for even a young child to have some control over their situation. After working with a family and helping the parents come to terms with the impending loss of their child, the parents were able to take the next step and talk with their seven-year-old daughter. Using books and reflecting their religious faith, this family was able to talk to their daughter about dying and heaven and what that might be like. This child understood very quickly and began to make some arrangements. She wanted to make sure that her younger sister got her money. However, she told her sister she could only spend it in a “Hello Kitty” store. To drive the point home, she told her sister she “better do it, because I will be watching from heaven!”

As children get older, they can get more specific about their medical wishes. Children who have battled illness for a long time have a very advanced knowledge of medical treatment and care. Recently, a ten-year-old patient stated to his care team that he “did not want to be alone in the ICU.” Although he did not use the word “die” it was clear in discussions with him that that was what he was afraid of. While not old enough to execute a legal advanced directive, it is impossible to ignore a patient’s strong wish. Unfortunately, the parents could not “hear” this request from their son, and he did die in the ICU. The family was not present. While we could not honor his request about being in the ICU, we, as members of his care team, stayed with him as he was dying, assuring him he was not alone.

Giving space for a child old enough to understand medical treatment and impact to discuss their wishes with their family generally can provide clarity and comfort to all involved. Parents as surrogate decision-makers agonize over choices. One family of a five-year-old boy diagnosed with Ewing’s Sarcoma struggled with the decision to amputate his leg. The parents did research and kept a journal of how they came to the treatment decision so if their son asked why later in life he had no leg they could explain how they came to that decision. We rehearsed the conversation together, and they then went home to tell him. In the morning, the mother shared that while it was so very hard to tell him, she was so glad she did. The parents told their son he would loose his leg. The little boy thought about it and told his parents, “Its ok, its not my leg that makes me Stephen, it is my heart.” What a gift.

One does not recover from a death of a child. One learns ways to go on, to live with the void. This loss can be eased with the knowledge that while death would be inevitable that there was peace in the passing. Having the opportunity to talk about the experience, no matter how painful initially, gives some comfort. Knowing that all decisions made were the best ones that could be made at the time based on the families values and needs helps the healing process. I think of Ashley, a beautiful dancer, dying of a brain tumor. Just before she slipped into a coma from which she never woke, turned to her mother and said “thank you for taking such good care of me.” What a motivation to keep families talking.

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