Many conditions could prompt parents to seek assisted death for children: doctor

TORONTO — For most people, medically assisted death likely conjures up the image of an adult with a terminal illness seeking to end their suffering. But surveys released this week show  pediatricians are increasingly being approached by parents of gravely ill children about aid in dying, even though the act is prohibited for those under 18.

The surveys by the Canadian Paediatric Society (CPS) found children’s doctors reported having more and more exploratory discussions about assisted death at the behest of mature minors or from parents of young children with life-limiting medical conditions. In some cases, physicians received explicit requests for aid in dying, with more than half of those for babies under a year old.

While the idea of taking a child’s life might seem unthinkable, doctors say there are a number of grievous conditions in which distraught parents might consider that option to avoid prolonging their youngster’s pain and suffering.

“I certainly have had inquiries from both patients and parents whose child has advanced cancer,” Dr. Dawn Davies, a pediatric palliative care physician at the Stollery Children’s Hospital in Edmonton, said Thursday.

“When we think about palliative care and end of life for children, everybody automatically goes to cancer, but that would actually only be about 20 per cent of my practice,” added Davies, chair of the CPS’s bioethics committee, who co-authored the surveys.

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But she said there are many other devastating diseases and conditions that will truncate a child’s life that could prompt parents to inquire about assisted death, starting with those affecting newborns.

“Sometimes, there’s something that we call multiple congenital anomalies. So that can be when you have malformations of many parts of the child’s body, some of which may be painful and for which we know the life expectancy will be limited,” said Davies, explaining that such malformations can affect many systems, from the eyes and brain to the heart, lungs and digestive tract.    

“And in those situations, sometimes parents will say: ‘Why does my child need to suffer through to the time of their natural death when we know it’s going to happen?’”

Other babies may be born with severe birth asphyxia that has left them permanently comatose but still breathing, she said.

“They will continue to live, but have no capacity to interact with their environment or be self-aware in the future, as far as we can tell.”

Older children may have neurodegenerative conditions that cause progressive physical and cognitive losses, Davies said. Some are accompanied by significant muscle spasticity and an inability to eat, control elimination or to swallow.

But Davies said there needs to be “a recognition that parents are making this request not as a self-serving thing … (but because) children have illnesses where there is really profound suffering.”

Teenagers with a severe and eventually fatal lung disease, for example, may also be among those who might seek a doctor’s help in ending their lives — and their suffering.

Such suffering can mean pain, but also a myriad of other symptoms, such as persistent shortness of breath, intractable nausea and vomiting, and debilitating weakness, she said.

There’s also existential suffering, especially in older children who may ask: “What is the purpose of all this suffering and if I am only going to die, why must I go through this?”

“I think the older the child gets, the reasoning becomes more similar to adults that are currently seeking medical assistance in ending their lives.”

Under legislation enacted in June 2016, adults with an incurable illness or intolerable suffering have the right to seek a physician’s help to die. The law also includes a requirement for an independent review of the issues related to assisted death for mature minors. That review is to be presented to Parliament in December 2018.

Shanaaz Gokool, CEO of Dying With Dignity Canada, said her organization doesn’t get many inquiries from mature minors or parents of younger children about assisted death, but the results of the CPS surveys “confirms what we already knew, that families are having these kinds of discussions.”

“What we fundamentally believe is that this is an issue of discrimination, and that young people who already have the capacity to make health-care decisions — including a decision to withdraw from life-prolonging medication — should not be arbitrarily discriminated against because of their age,” she said, referring to mature minors.

“And we recognize and support the Canadian Paediatric Society position that there needs to be fulsome consultation, more conversation … and I think having these conversations can be very important to the families that are going through varying levels of crisis as it relates to their children.”

Sheryl Ubelacker, The Canadian Press