Seriously ill children and teens, as well as parents of brain-damaged babies are requesting a practice that's now only legal for adults.Jevtic/Getty Images/iStockphoto
Doctors across the country are being approached by children, teenagers and parents about accessing medically assisted death, according to a survey that provides the first snapshot of how often minors would request a practice that's now only legal for adults.
A Canadian Paediatric Surveillance Program (CPSP) survey, released Thursday, shows the frequency with which pediatricians are having exploratory conversations about, or fielding explicit requests for, medical assistance in dying (MAID). The findings could inform changes to federal legislation, and underscore the tension between an individual's right to autonomy and society's responsibility to protect the most vulnerable.
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Of the 1,050 pediatricians who participated in the survey, 118 said that over the course of a year, they had MAID-related discussions with a total of 419 parents; most of the minors in question were children under the age of 13. When it came to explicit MAID requests, 45 doctors said they dealt with a total of 91 parents. Nearly half of the requests related to infants less than one month old.
The survey also found that 35 doctors had exploratory conversations with a total of 60 minors, and nine pediatricians reported getting explicit MAID requests from a total of 17 minors. The vast majority of the minors in both scenarios were aged 14 or older.
Most of data collected by the CPSP, a joint project by the Canadian Paediatric Society (CPS) and the Public Health Agency of Canada, reflected the experience of doctors in 2016; a small number of pediatricians referred to incidents over the span of their career.
"[The data] give a view into the real world, rather than hypothetical scenarios," said Dr. Dawn Davies, the survey's principal investigator and a pediatrician specializing in palliative care. "I think, luckily, the average Canadian will never need to have a second thought about [access to MAID], but for families and minors that have really serious illnesses, I think this needs to be really well thought-out."
Dr. Davies, who chairs the society's bioethics committee, described some of the types of cases that are prompting families to want access to MAID: brain-damaged babies who cannot breathe on their own or swallow their saliva; children with neuro-degenerative diseases that attack their body and brain; and teenagers with advanced cancer who say they would rather end it all than go on this way.
It has been more than a year since the federal government enacted legislation allowing medically assisted death for consenting adults who have a grievous and irremediable medical condition. The matter of who can choose death, however, is far from settled. The parliamentary committee that issued a report on MAID in early 2016 heard from various health groups that said that while they were open to the possibility of allowing MAID for some minors, such access should not be covered by the initial legislation. More study, the committee heard, was needed.
The Liberals have tasked the Council of Canadian Academies, an independent non-profit, with conducting reviews of three complex types of requests: advance directives by those who want to secure MAID before they no longer have the capacity to legally do so; instances where mental illness is the sole underlying medical condition; and requests by mature minors. The council's findings will be released toward the end of next year.
The "mature minor doctrine" acknowledges that patients' ability to comprehend their circumstance and the consequences of a particular treatment is determined by more than age. It holds that a child's preference should be afforded a degree of deference based on maturity.
The CEO of the advocacy group Dying with Dignity Canada noted that mature minors in this country already have the power to make consequential health decisions, so it is incongruous for the government to deny these same young people the right to choose death.
"How can we look away and say you have to be 18 before you can access MAID?" said Shanaaz Gokool, adding that the group supports further consultation on the issue. "That's the real question that we need to grapple with in the coming months ... . It's their body, and it should be their right [to choose MAID] if they have capacity."
The executive director of the Euthanasia Prevention Coalition, which opposes MAID altogether, said minors – as with some elderly people and those with a severe mental illness – are highly dependent on others and particularly vulnerable to outside influences.
"The question remains, are they fully autonomous?" said Alex Schadenberg. "This is a very difficult question, and I would say it's one that should be left closed."
Only two countries – the Netherlands and Belgium – allow minors access to medically assisted death. The former goes so far as to extend the legislation to include newborns judged by neonatologists to be experiencing "hopeless and unbearable suffering."
The CPS conducted a separate, smaller survey involving 574 clinicians that found nearly half of respondents were in favour of extending MAID to mature minors experiencing progressive or terminal illness, or intractable pain. The society is urging Ottawa to undertake comprehensive consultations on allowing mature minors access to MAID.