‘RIGHT TO DIE’ POLICY AIMED AT CHILDREN
SHOULD ‘CAPABLE MINORS’ MAKE THE DECISION?
Canada’s largest children’s hospital is drafting a policy in preparation for the day when children could decide for themselves to be euthanized. A team at Toronto’s Hospital for Sick Children has developed a draft policy on doctor-assisted dying that applies to youth aged 18 and older — the legal age restriction for “medical-aid in dying,” or MAID, in Canada. However, the policy was also developed “with an eye to a future when MAID may well become accessible to capable minors,” the team of bioethicists, palliative care doctors and others report in the Journal of Medical Ethics.
In the introduction to the article, they state, “Thus, this paper is intended as a road map through the still-emerging legal and ethical landscape of paediatric MAID.”
The Sick Kids’ working group says the hospital has willing doctors who could “safely and effectively” perform euthanasia for terminally ill youth 18 and older who meet the criteria as set out in federal law, and that it would be “antithetical” to its philosophy of care to have to transfer these patients to a strange and unfamiliar adult hospital. But it is a suggestion that euthanasia might one day take place without the involvement of parents that has provoked fresh controversy in the assisted death debate.
The working group said it wasn’t convinced that there is a meaningful difference for the patient “between being consensually assisted in dying (in the case of MAID) and being consensually allowed to die (in the case of refusing life-sustaining interventions).”
In Ontario, “young people can be and are found capable of making their own medical decisions, even when those decisions may result in their death,” they added.
The paper explored a hypothetical scenario: “How should health-care providers respond if a capable patient requests MAID but their parents clearly oppose this request? Are there situations in which MAID requests and administration would be kept secret from parents and other family members, for example, if a capable patient were to indicate that they do not want family members involved?”
The law in most provinces already allows mature minors to make decisions about their own care, including withdrawing or withholding life support. In Ontario, a minor is considered “capable” of providing consent if he or she has the maturity and intelligence to make a decision about the treatment and can appreciate the “reasonably foreseeable consequences” of their decision.
The Sick Kids’ group says families are usually involved in such decisions and that every effort is spent to encourage youth to involve their families but that “ultimately the wishes of capable patients with respect to confidentiality must be respected.”
The draft policy argues the same rules should apply to MAID since there is no meaningful ethical or practical distinction from the patient’s perspective between assisted dying and other procedures that result in the end of a life, such as palliative sedation (where people sleep until they die) or withdrawing or withholding lifesustaining treatments.
The paper comes as a report by an expert panel struck by the Liberals to explore extending euthanasia to mature minors is to be presented to Parliament in December. The Canadian Council of Academies was also asked to look at cases where mental illness is the sole underling medical condition, as well as “advance requests” to end one’s life in the future.
Sick Kids’ draft policy has riled groups opposed to euthanasia, but the authors say the government could stipulate the need for parental consent.
“A young person experiencing grievous and irremediable suffering is unimaginably tragic,” said Randi Zlotnik Shaul, director of bioethics at the Hospital for Sick Children and a member of the expert panel studying assisted dying for mature minors.
But assisted dying requests from minors would likely involve “very, very small numbers” and any changes to the law “would, of course, require corresponding changes to hospital policy,” she said.
The draft policy states that, in order to protect staff from “potential violence and social harassment,” it will not make public the names of doctors who have volunteered to provide MAID, nor will it make public a full list of people on the working group.
For some doctors who care for terminally ill children, there is a particular horror at the idea of euthanasia for children. They have argued that when all hope for a cure is gone, virtually all pain and other symptoms can be managed to minimize suffering. In the rare cases where suffering becomes unbearable, they say, a child can be sedated.
Assisted dying involves an injection of barbiturates that abruptly ends life.
Legalization of euthanasia for children under 18 would be “enormously controversial,” said renowned New York University bioethicist Arthur Caplan. In the U.S., states that have made assisted dying available have done so with very narrow restraints, Caplan said. “I have no doubt that a child might ask for it, but whether they could really fulfil that competency test for such a major, life shattering decision, the U.S. says no,” Caplan said.
“I’m worried about how far people may be pushing this,” said Trudo Lemmens, a professor in health law and policy at the University of Toronto.
When it struck down the Criminal Code prohibitions against euthanasia in 2015, the Supreme Court of Canada “clearly did not equate medical assistance in dying with just any other form of medical care,” he said.
“We do put limits on individual choices of mature minors that expose them to harm,” such as surrogacy and egg donation, Lemmens added. “I think we have to carefully reflect on what it would mean to allow this particular practice without involvement of the parents.”
The Netherlands and Belgium are the only two jurisdictions in the world where assisted suicide for minors is permitted. The law in Belgium allows terminally ill children of any age to request euthanasia, with their parents’ consent.
In the Netherlands, the law requires parental consent for 12- to 15-year-olds, but permits 16- and 17-yearolds to request a doctor-assisted death.