Bioethicist Franco Carnevale recalled the assumptions he held about families caring for children using ventilators at home, prior to launching a study of them. “Our preconceptions going in were that this was an intrusive, aggressive intervention and we needed to rethink the hardships we were imposing on these families,” he said.
Franco, a clinical ethicist, nurse and psychologist at McGill University and its affiliated hospitals, was speaking at Holland Bloorview’s Pursuit Awards.
“From our critical-care lens, we had made prejudgments about what kind of life was worth living,” he said. “We went into these families’ homes looking to create lists of hardships.”
Instead, while learning about the real challenges these families faced, they also heard about the joy in their lives. “They talked about the interplay between difficulties and rewards,” Franco said. “Parents did not want us to talk about their child’s life as a burden.”
Perhaps most interesting was the meaning that a four-and-a-half year old gave to her BiPAP machine. A BiPAP delivers pressurized air through a mask so that a child can take bigger breaths when his or her breathing muscles are tired or weak.
“My ‘pap’ makes me happy,” the child said. “I really like my pap. The pap is good because it helps me to breathe.”
Accordingly, the resulting journal paper was called Daily Living With Distress and Enrichment: The Moral Experience of Families With Ventilator-Assisted Children at Home. BLOOM interviewed Franco in 2011 about the study.
Franco noted that when we think about ethics related to children living with complex conditions, we think of concerns voiced by health-care professionals. “These are important,” he said.
But we have little data based on the voices of the children living with these conditions, and their families. “So little is known about the ethical dimensions of their everyday lives,” Franco said.
He noted that historically, children were viewed as a family’s possessions, not as human beings. When their value was considered, it was in the context of whether they could make productive contributions as adults. The voices of children continue to be minimized in health care today, he said.
Franco proposed a paradigm shift from thinking about “pediatric” ethics to “childhood” ethics. “The tone of pediatric ethics suggests we are starting with the concerns of health-care professionals. What we need is a field of childhood ethics that is centred on the moral lives of children. We need to develop a new philosophy, or outlook, to understand human experiences more richly. We need to be able to understand what is most morally meaningful to children and families in their everyday experiences.”
Franco noted that an emerging “sociology of childhood” will take an interdisciplinary view of how we understand children, drawing on history, philosophy, sociology and anthropology.
The new field moves away from the “deficit orientation” of some dominant forms of developmental theory, which look at how removed the young child is from the ideal prototype of humanity—the adult.
“Children have agency,” he said. “They have the capacity to be active, moral agents who have preferences, views and outlooks on what is meaningful to them.”
Franco said the field of childhood ethics would favour qualitative approaches to understanding children’s experiences, voices and agency. “These are hard dimensions to capture through structured, measurement approaches,” he said.
Rather than a psycho-social approach to listening to children, which aims “to comfort or reassure,” Franco said, “we need to develop a way to interpret how the wishes, preferences, hopes and aspirations are ethically significant to a child.”
He noted that ethics in health is based on the idea of treatment that serves a child’s best interests. “But how do we define best interest, and who gets to define it?”
Franco said he and his fellow researchers got their definition wrong before they studied families living with children with ventilators at home. “’Best interest’ needs to be linked to what is morally meaningful to a child,” he said.
In answering a question about the notion of “giving a child a voice”—which is how the media often frames stories about voice technology—he said he doesn’t use that phrase. “All children have voices,” he said. “We haven’t been listening.”
In an e-mail exchange after his talk, he recalled working as a pediatric nurse in the 1970s, when the medical theory was that newborns didn’t feel pain. “I recall many times holding down newborns as tubes were inserted between their ribs, or catheters into their major veins. These babies grimaced and squirmed. Parents were horrified, although they rarely witnessed this, because they were forced to step out during these procedures. These babies were vividly expressing distress, but we discounted their ‘voices’ because we didn’t understand them.”
Franco says the same holds true for any child who doesn’t communicate in conventional ways. “In many situations, parents are optimal interpreters for these voices.”
Franco Carnevale is principal investigator of VOICE: Views On Interdisciplinary Ethics. You can follow VOICE on Twitter @childethics. Pictured above is Zoey Faith with Holland Bloorview nurse Joy Zergara.
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