[box]I hope you’ll never have to answer this question. But just thinking about it will give you insight into how age relates to an understanding of death. S. Goldberg (2006) Hospice Volunteer News, First Quarter.[/box]

What would you say if a terminally-ill child asks the question? Should you be honest, probing, or try to convince her this is just a passing illness? The decision may be dictated by parental preferences or institutional policies. But what if there’s latitude in what you can say, or the moment is so pregnant with a child’s concern you don’t have time to consult with anyone? As with most things in hospice, there isn’t a right or wrong answer—just different ones.

How Children Process Information

Regardless what you decide, the words you use should be based on how children process information. Information processing is basically what we do with the billions of sense data that constantly bombards us—it’s how we sift the “stuff” of our world through an amalgam of beliefs, experiences, and intelligence. It results in an individualized collage of life and death. And it applies to both adults and children.

Death, for adults, is inherently tied to loss—what one had, what one currently has, and what never will occur. With fewer memories and a limited capacity to envision the future, a child’s concept of death is very different from an adult’s. I recently experienced the chasm at George Mark Children’s House. We had an adolescent with a terminal illness. Although he was clearly aware of the dramatic changes his body was undergoing, I didn’t know if his family had spoken to him about dying. When I came into the room, he was sitting on his bed, watching a “reality” show. There were two graves dug side-by-side and an open coffin in each one. Standing above them were two couples in their 20’s. Each woman slid into a coffin. Then, worms and rats were dumped on top of them. The lid was closed and a backhoe dumped dirt on the coffin. The object of the game was to see whose partner could “unbury” the other quickest. I was appalled and asked Bill (fictitious name) if he would like to watch something else. He vigorously shook his head no. Instead of expressing the horror or discomfort I imaged he was having, he laughed hysterically and said, “This is the best episode ever.” I mistakenly used my view of death to understand his; something which led me to a wrong conclusion.

If the concept of death is related to one’s history and future expectations, how does a child understand it? How many memories does 6-year-olds have? Is it possible for her to understand what she will miss as a 20, 30, or 40-year-old? For children, seeing a lifeless animal or person is very concrete—they don’t move, they don’t respond. But it’s also incredibly abstract. Yes, I understand they were very ill, were run over by the car, etc., but were did they go?

It may not be possible to “know” a child’s view of death. But we can understand the process they use to arrive at it. Children think concretely. With age, abstract abilities gradually unfold. For Bill, seeing people in coffins being buried had no relationship to what he was experiencing and feeling.

What the Question Means to Children

The younger a child, the less likely they can comprehend the abstract part of death—those things adults can only guess about. Questions of “Am I Dying?” may have more to do with children wanting to understand the changes they are experiencing, and less than needing to explore what happens after they die. In three years, I’ve never had a child ask me if he or she was dying, although I’ve known other hospice caretakers who have. What I have been asked are questions about physical changes related to dying. Why am I throwing up? Why do I need a diaper? Why can’t I walk anymore? I don’t think children look for definitive answers to ideas they have difficulty even imagining. I’ve found the answers they seek are ones involving explanations of what they’re currently experiencing. Question–Why am I throwing Up?  Answer—The medicine we’re giving you is very strong. Question—Why can’t I walk anymore? Answer—Your muscles are becoming weaker because of your illness.

Comfort as the Guide

Being very ill is unsettling; especially if it’s for the first time in a child’s life. Within their questions is a searching for comfort; rarely is it a desire for an esoteric discussion of death. Comfort can come from an explanation of what is happening to their body and mind, gentle rocking, whispering loving sounds, playing a Native American flute, or the caress of someone whom they perceive cares about them.

But what do you do if a child asks “Am I dying?” and your attempts to supply “comfort” through anything other than a simple “yes” or “no” answer is insufficient and you don’t have any guidelines or directives? Your criteria should be whatever will enable the child to have a more peaceful transition. For adults, the acceptance of death can result in tying up loose ends, making amends, and saying goodbye’s—things I’ve found to be important for peaceful adult deaths. But I’m not sure how much of these benefits apply to children. If you’re one of the few hospice volunteers who needs to provide that honest answer, saying the word “yes,” won’t be the hardest thing you’ll ever have to do. It will be your willingness to provide the ongoing emotional support—the emotional comfort the word requires.

copyright 2006 Stan Goldberg, stangoldbergwriter.com

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