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A few years ago, I had the good fortune to join a research team that intended to create a device to help dying children express their wants and needs despite communication challenges. The brain tumor team at SickKids [also known as The Hospital for Sick Children] had cared for several children whose sensory and motor function had changed unpredictably, either suddenly or slowly, making it increasingly difficult to speak, write, or even gesture to family members.
As a child life specialist on the neurosurgery team, my role was to support children’s understanding of illness and treatment; to express their emotions; to prepare for and cope with procedures, changes in their bodies, changes in their abilities, and the impacts of the disease on them and their families. This is how I met Madison, an amazing 9-year-old girl, and her family when she was diagnosed with an inoperable brain tumor.
Over the next few months, Madison lost her hearing; communication became louder for everyone but her, until finally, when she couldn’t hear at all, conversations were written rather than spoken. During clinic visits, I would transcribe with Crayola markers, back and forth between Madison and her care team: a position of honor. Between visits, she would e-mail her questions to me in a large font and communicated with family and friends by using a homemade messaging program that her dad had devised for her.
When her vision became too blurred for her to be able to read, her family developed an intricate system of gestures and modified sign language. They learned to lip read and used exaggerated facial expressions to convey their emotions. Their intuition became so finely tuned, they seemed to “know” what each of them was thinking and shared their love and support with a look or a touch. Without the benefit of words, it seemed that this girl and her family had found a way to communicate what was most important at the end of her life.
They were not the first or the last family to go through this, but our team was struck by how patiently they’d devised and mastered so many creative communication strategies at a time when most people don’t have the energy to be patient or creative. And of course, none of these brilliant strategies made it easy to communicate or to cope with what was happening, but they did help, and they inspired our team.
Creative Way to Communicate
We set out to create a user-friendly computer program that a child could use to scroll through categories of messages, activating the appropriate word or phrase in response to a touch, gesture, or even eye movement. A system like that could give children back some control, their own voice—something to counter the overwhelming feelings of helplessness. With this in mind, we set out to interview bereaved parents who had been through similar experiences to find out what this device should do, what messages to include, and what it should look like.
At the time, I thought the questions we were asking were concrete and straightforward, but the responses I’d anticipated were vastly different from what was stirred up for parents. Our simple questions were met with profound responses. For instance, to populate a list of messages to include in the device, I asked, “What was important to talk about?” I started to feel awkward asking this question because it continued to be met with a puzzled expression because, obviously, “everything was important.”
What’s Important to Parents and Families
Making sure that children were not in pain, cold, or hungry and that they were comfortable, happy, and ideally not bored trumped everything else for parents. Some people described tools they used to figure out where the child’s pain was, including a stuffed cat: the child would point to the part of the cat’s body where his or her own pain was. Tools were helpful for talking about feelings too, although this was a topic requiring care, intuition, and precision. Many families used charts of “feeling faces,” pointing to the one that showed how the child was feeling. One parent described the significant difference between “angry” and “frustrated” and the importance of validating the right feeling; although it may feel like a subtle difference to some, for a child with such limited opportunities for expression, this distinction was critical.
Being able to talk about “regular stuff” was also extremely important for families. This “stuff” could be anything from gossip at school, the week’s errands, or what movie to watch. Doing what felt “normal” was described as being beneficial for the ill child but seems undoubtedly to have been helpful for the rest of the family as well.Error loading Partial View script (file: ~/Views/MacroPartials/TAP Article Portrait Widget.cshtml) Error loading Partial View script (file: ~/Views/MacroPartials/TAP Article Portrait Widget.cshtml)
Tools have their time and place, but at the end of a child’s life, the people themselves are the most precious tools. Their relationship is the communication aid; their familiarity and their history together are the vocabulary that populates the tool.— Ceilidh Eaton Russell, PhD, and Eric Bouffet, MD, FRCP(C)
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Some families talked about missing particular aspects of “normal” that they hadn’t even noticed before they were gone. For example, one mother described spending a great deal of time discouraging her son from calling his sisters “idiots”; but when he lost the ability to speak, this was one of the few messages they programmed into his “voicebox,” a computer with buttons he could press to have recorded messages spoken aloud. Suddenly, losing the capacity to misbehave had altered the family dynamic in a way they hadn’t expected and were not willing to accept.
The loss of a child’s tone of voice, expression of his or her sense of humor, and the sound of his or her laughter was profound for these families. These were things I hadn’t fully appreciated when we were designing this study and the interview questions—how much of a person there is to miss when we can’t hear their voice or their giggle; when they’re limited to the words and phrases written on their communication boards or to the “yes” or “no” questions their caregivers think to ask—how often they get left out of the conversation entirely because less familiar people assume that no verbal response means no response at all.
Love Amid the Heartache
Many of the parents I spoke with had heartbreaking stories of times when they just couldn’t figure out what the child wanted to say. They described the absolute frustration and helplessness they could see in their child’s eyes, no doubt mirroring their own. Just “running out of questions.” One mother described an interaction with her son while he was still able to write, although it was getting less and less legible. She had verbalized his letters as he wrote them, “p-o-o-p,” and felt sure that she’d spent 15 minutes guessing what he could possibly want to tell her about poop. Did he need to go to the bathroom? Was he constipated? Cramping? No, no, no. Eventually, she went back to check each letter; “Is it a “P”? Yes. An “O”? Yes. Another “O”? Yes. Another “P”? No. No. She looked at it again. “Is it an “R?” And her heart sank. He’d been trying to say “poor me.”
Understandably, the heartache of these stories was as fresh as if it had happened yesterday. But so too was the love they recalled from some of the intimate moments they’d shared together. I had asked families what their children understood about their illness, with the intention of collecting their vocabularies so that the computer program could be stocked with words like “tumor,” “headache,” or “chemo.” Instead of a list of terminology, I heard incredibly rich stories.
One family told me that the day they brought their daughter home from the hospital, not having had any discussion about long-term outcomes or prognosis, their 8-year-old daughter asked, “How do you spell ‘will’?” She’d started to think about who she wanted to give her prized possessions to, just in case. I tried to imagine how “will” would fit into our computer program.
Many parents shared stories about their children talking or wondering about death: sometimes their own, sometimes in the abstract, sometimes when families had talked about prognosis before, and sometimes when “death” or even “cancer” were not words the family had spoken aloud. A few children, some of whose parents didn’t think they knew that they could die, had given away toys to their friends after play dates—one even went so far as to label a toy for every child in her class. Another child asked her father to keep a lock of hair to remember her by. In retrospect, many of these parents suspected that these were their children’s ways of saying “goodbye.”
Talking About Death
Some families had spoken openly about death and their beliefs about what happened afterward; sometimes children even started these discussions. One mother told me that they’d been in the middle of playing a board game when her daughter looked up and said, “I’m going to miss you.” Occasionally parents would initiate conversations about dying, after a lot of careful thought and planning.
A few families talked about the struggles they faced, deciding whether or not to bring up the possibility of death and how to frame it. One mother described how reluctant and anxious she and her husband had been about “telling” their teenaged daughter that she could die, and realizing as they spoke with her that she had already known and was relieved that she could now share this awareness with her parents. Together they planned the special ways that the family would continue to honor and celebrate her after she died.
Some parents would talk about it as an “if”—that they would keep trying and praying—but “if” the child were to die, what did he or she imagine heaven or an afterlife might be like? One 7-year-old boy didn’t want to talk about anything else, except what he would be able to do in heaven, what his jobs would be, and how he would look out for his sisters if he were to die. A little girl had a photo album of all the people in her family who had died and who would be there to greet her. One very young girl wondered how the angels would be able to carry her, and another reassured her mother that God was looking out for her and not to worry.
Sitting in families’ kitchens and living rooms and hearing these treasured stories, I often had moments of wondering, “How in the world did I earn this privilege?” And, “What was the question I asked that led to this heartfelt reminiscence?” The simple question, “What was your child’s understanding of the illness?” had stirred their thoughts and feelings about the way they had responded as a family to the child’s illness and prognosis, incorporating it into their lives, and the way they were together during those precious days.
Unbelievably, I had to find a way to segue from that to questions about the design of a computer program. As awkward as it felt to change directions so dramatically, that uncomfortable shift helped to highlight the critical point that we were missing. Throughout the interviews, there was a disparity: on one hand, families had felt helpless and wished so badly to have had a tool that would have allowed their child’s voice to be heard; on the other hand, families seemed to have tried every tool imaginable, and there was something missing from every one of them. They had used bells, alphabet boards, homemade picture books and message boards, sign language, lip reading, gestures, Magna Doodles—everything. Each tool worked for a while, given the right abilities, but when those abilities changed unexpectedly, families had to try something new, with less and less energy or patience to learn one technique after another.
The thing that worked for the longest time and for the widest range of abilities was for parents to learn to ask everything as a “yes” or “no” question and for the child to learn a few different ways of signaling “yes” in case the ability to make one of those signals was lost; the absence of the signal meant “no.” Parents would start with a broad question like, “Are you uncomfortable?” and then have to narrow down the body part, the sensation, and what would help. Or, “Are you upset?” and then narrow down the specific emotion, the cause, and what would help.
Searching for Meaningful Connections
One day I interviewed a family that had used a hi-tech, touch-screen tablet with thousands of messages when their daughter was dying. The father was a computer programmer so if anyone would have been able to make the most of this device, it would have been this family. Imagine my surprise when he told me that they’d put it away after only a few days. All of the parents I spoke with had had great ideas for how a device should be designed, what it should be able to do, and how to engage kids with it. But this father’s point was that as it gets closer and closer to the end of a child’s life, there’s no “thing” that can meet their most important needs.
“They want to talk to their parents, they want to see their parents’ eyes.” He explained that the device, any device for that matter, meant that the child was looking down, touching a button, and hearing an artificial voice come out. At that time in her life, the thing that was most important to the family was making meaningful connections, making eye contact, exchanging facial expressions and body language, sharing their love through touch and familiarity. “Expressions and things like that, a machine cannot replicate at all.”
Of course, he was right. We had been focused on creating a device to support meaningful communication, but a “thing” between two people creates a distraction from their connection. Tools have their time and place, but at the end of a child’s life, the people themselves are the most precious tools. Their relationship is the communication aid; their familiarity and their history together are the vocabulary that populates the tool. Sitting with this family, I remembered another mother telling me, “The manner in which you communicate, too, is important. Not across the room, not when everyone is in your ear. Eye to eye and you’re touching, you’re as close as you can be and you don’t even have to say anything sometimes and you can still get a message across to somebody ‘cause they can feel your love.’”
When children’s abilities begin to change, families may need help deciding which tools to try, learning to frame questions differently than they’re used to doing and helping their children learn ways to signal “yes.” They need encouragement to trust their experience and intuition and to be patient with themselves; to know that when it’s hard, it’s not because they’re missing something or doing it wrong, but because it is heartbreaking that a child they love is dying. We need to affirm that at the end of a child’s life, the purpose of communication shifts from content to connection. Because of that, it is not a tool that families need, but the reassurance that they can do this and to know that they have—in fact, they are—all that they need already. ■