Profound answers to simple questions.

Abstract

DOI: 10.1200/JCO.2014.59.6627 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 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 to gesture to their 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 they 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. 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 an eye movement. A system like that could give a child 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.” Making sure that children were not in pain, or 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 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 JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 33 NUMBER 11 APRIL 1