07/31/2012 06:24 pm ET Updated Sep 30, 2012

Talking to Children About Terminal Illness

A Most Difficult Decision

A recent article by Alex Ward appeared in the Daily Mail that described how the parents of a 12-year-old boy diagnosed with a terminal brain tumor opted to tell their son about the tumor, but not to disclose that it was terminal. Why? Because they wanted their son to be able to enjoy the year he had without the potentially paralyzing anxiety of knowing that his days were numbered. As a result, Adam went to school and joined family and friends in many "normal" activities as well as a few "special" ones such as taking a ride in a helicopter. This raises the question: Should parents talk to children about terminal illness, and if so, what should they say?

The above story reminded me of one I heard when preparing to write Saying Goodbye: A Guide to Coping with a Loved One's Terminal Illness. In the course of writing that book, my co-author, Dr. Barbara Okun, and I interviewed many people who themselves had gone through this experience to see what lessons might be learned that could be of help to others.

Here is the story as Debbie (a pseudonym) described it to me:

I lost my daughter, Rose, to leukemia when Rose was just 6 years old. She was my first child. Losing Rose was the most painful experience of my life. For years afterward I worried that my other children -- we had three more -- would feel like they lived with a ghost, because she died before they were born. When people would ask me how many children I had I would respond by saying "I had four, but only three are living." I would say this even when my other children were present. Yet I resisted talking to them about Rose or her illness. I think that only mothers who have lost children could possibly understand this kind of loss.

I am a pediatrician, and I experienced a tremendous amount of guilt and self-hatred over my inability to cure my daughter or even to help her sometimes when she was in pain. It was so hard to talk to her about her illness and what its repercussions might be. This was my child, she was my responsibility, but I could do nothing to save her. Tom and I ended up just telling her that she was very ill and that everyone was doing as much as they could to make her better. I believe that on some level Rose understood that she was dying, but she and I never actually had that conversation. I don't know if it would have made a difference.

The story of Rose, along with the story of Adam, are instructive for us parents. First, one has to wonder whether both Adam and Rose knew, on some level, that they were not just very ill, but in fact dying. Debbie certainly thought so.

Second, we need to think about what would be gained by revealing a prognosis and life expectancy to our child. Were Debbie (and Adam's parents) being cowardly, or were they being loving? Is it a disservice to children to withhold information, or do parents bear the burden of making such decisions all the time? After all, do any of us know with any certainty how long our children will live?

Terminally Ill Parents

The issue of talking to children about terminal illness takes a different turn when it is not the child, but the parent who is terminally ill. When Elizabeth Edwards died at age 61 following a long battle with cancer, she left behind three young children. Her situation raises a different, but also important and challenging issue: When and how do we talk to children about terminal illness in a loved one?

Children today are likely to be exposed to the reality of a terminal diagnosis in a parent, other relative or friend from the time they enter school. As a consequence, more and more children will experience the prolonged process that Edwards' children experienced as medical advances allow people diagnosed with a terminal or potentially terminal illness to live months and even years beyond what was once the norm.

Children are aware of "death" whether or not they have experienced it in their family. They know about it from fairy tales, television shows (including nature shows), the death of a pet, etc. And while their parents may not realize it, children are aware of many things, including terminal illness and death, through their classrooms. My 10-year-old daughter, for example, surprised me one day with this knowledge. When told that an older cousin had been diagnosed with leukemia, she replied, "I know about leukemia. A girl in my class has it."

The ways in which children respond to terminal illness and death is shaped in large part by their social environment. Most prominent in this regard are parents, teachers and family. Children are very sensitive to the emotional moods and non-verbal communications of adults around them, and they sense when a parent is upset, even if the parent thinks that the child is unaware of what may be happening. So it makes sense to us to open communication rather than avoiding it.

Obviously, the level and type of discussion depends upon the child's developmental stage and the unique characteristics of the child's emotional, cognitive and social development. Research shows that it is helpful for families to talk about death and dying as a normal part of the life process when children are young in order to help them clarify their concepts of the life/death process. This may be even more important today, when children can expect have at least one close relative battle a terminal illness, for months or even years.

The most important things to establish this ongoing communication are as follows:

• That the child's loved one is indeed very sick and will be undergoing treatment.
• Do not promise a child that heir loved one will not die; rather, say that most people today do live a long life, that if they do get sick there are many more ways to help them and that you are taking care of yourself and others in the family to help achieve that.
• Explain how treatment will affect the loved one. Will there be a loss of hair, a loss of energy?
• Explain how the child's life will be affected. Will routines change, will there be a change in caregivers?
• Finally, bring up these issues on a regular basis, as children may hesitate to ask questions if they sense that doing so will make you uncomfortable.

It is important for children of all ages to be given as much information as they are able to absorb -- but not more than they can absorb. Parents will best be able to assess their individual child's capacity to understand during these conversations if they are attuned to the child's emotional responses and if they can share their own grieving with the child.

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