Data collection system to monitor doctor-induced deaths is flawed, experts warn

  • September 20, 2018

New federal government rules to monitor euthanasia and assisted suicide are opaque and weak at a time when legally induced deaths are rising at alarming levels, warn several organizations.

The Council of Canadians with Disabilities, the Canadian Mental Health Association, L’Arche Canada, the Canadian Association for Community Living and a host of researchers in medical ethics and psychiatry are worried that data-collection rules that come into effect Nov. 1 will be insufficient to adequately assess the situation in Canada.

 Doctor-induced deaths in Canada jumped to 1,523 in the first half of 2018, according to Health Canada, a 29-per-cent increase from the previous six months. That follows the first year of legal medical killing in Canada in which death rates were eight times higher than those in Belgium during that country’s first year of legal euthanasia, according to University of Oxford bioethicist David Jones.

For the Council of Canadians with Disabilities, which has 40,000 members, the new reporting system is inadequate because information collected by Health Canada regarding patients’ access to palliative care and disability supports is not provided to Parliament or to the public.

“We simply don’t know whether people who needed and wanted this support, and didn’t get it, are having their lives terminated under MAiD,” said a joint release from the CCD and the Canadian Association for Community Living.

The new reporting system also fails to cover the social determinants of health — whether or not people who request euthanasia are poor, Indigenous, immigrant, disabled or a member of other stigmatized groups. People with disabilities, including intellectual disabilities, will slip into the euthanasia process without anybody thinking about how a life with disability can be valuable, according to L’Arche director of outreach and communications John Guido.

“We need to speak about the communal rights, to ensure that life is respected and that there are community supports for people,” Guido said.

Guido wants data that reports on the options being presented to disabled people, and on whether the disabled are choosing death more often, or are offered death more often as a solution, he said.

“People with intellectual disabilities are very aware of that, of feeling that, ‘I’m the person who is causing anguish to my family by being alive,’ ” Guido said. “They’re not necessarily at the stage of needing palliative care when they’re being sometimes introduced to this (medically induced death).”

The new rules are intended to strike “a balance between what is reasonable to expect the health-care provider to know and intruding into the private life of the person seeking the service,” said Health Canada spokesperson Rebecca Purdy. “The federal reporting regime has been developed with the potential to link with other national databases with socio-economic information.”

The government’s claim to be striking a balance between the “interests of those who might be at risk in a permissive regime with the interests of those who wish to seek assisted dying, as well as society as a whole,” leaves University of Manitoba psychiatry professor Skye Rousseau worried that researchers will be left without good information.

“It sounds rather vague. I’m not sure what it refers to,” he said.

“You might just think of data as this abstract sort of thing, abstract from reality,” he said. “But the reason for data collection with respect to MAiD is not simply for research purposes. It’s also to ensure thoroughness of process in terms of how the decision to offer such a thing to someone is come to. The stakes are maybe a little bit higher in that regard.”

Shanaaz Gokool, CEO of the pro-euthanasia organization Dying With Dignity Canada, concedes there are gaps in how data is collected about those requesting a medical death and the circumstances around their decision.

“We don’t know that the 40 per cent of people who have accessed MAiD in their homes, if they’ve had palliative care in their home or not,” Gokool said. “We don’t actually know the answer.”

Without quality palliative care the debate continues on whether patients really have a choice about end-of-life decisions. Minister of Health Ginette Petitpas Taylor is due to deliver a national framework for palliative care in December. 

In a parallel argument, the Canadian Mental Health Association is warning that Canada should not extend euthanasia and assisted suicide to mental health patients who cannot access timely, quality psychiatric care. It makes no sense to offer assisted suicide to the mentally ill when Canada lacks a national suicide prevention strategy, according to the CMHA. 

“The Canadian government should choose to support recovery for mental health patients rather than MAiD, and further invest in services, supports and research regarding mental health,” said a Sept. 7 release from the CMHA.

“When you actually poll psychiatrists, and I suspect physicians in general, but certainly psychiatrists, there’s a lot of concern about mental illness impacting a person’s decision to access MAiD,” Rousseau said. “In psychiatry we work to prevent suicide. We generally view desire for suicide as part of, or representing, underlying pathology or depressive illness.”

In 2016 Rousseau polled Canadian psychiatrists on assisted dying. He found that while 72 per cent favoured legalization in some circumstances, just 29.4 per cent supported it on the basis of mental illness. Most felt that providing assisted suicide for mental illness would break the bond of trust between doctor and patient.

Rousseau says that academic debate about the relationship between assisted dying and general suicide rates is floundering in the absence of good data. 

Ethicists such as Australia’s Margaret Somerville believe the relationship is clear. “The general suicide rate has increased in every jurisdiction that has legalized assisted suicide,” Somerville wrote in a 2017 article for ABC Religion and Ethics

But Brian Mishara, director of the Centre for Research and Intervention on Suicide, Ethical Issues and End-of-Life Practices at the University of Quebec at Montreal, says “Somerville is wrong” and suicide rates have not increased.

University of Alberta ethicist Heidi Janz believes the link “is obvious.”

“Once we, as a society, sanction deliberately hastened death as an acceptable means of dealing with irremediable physical, psychological or existential suffering, the distinction between whether death is hastened by a medical professional or by the suffering person themselves becomes essentially meaningless and thus irrelevant,” said Janz in an email. “It is absolutely incumbent on the government to collect information that could either prove or disprove a link between legalized assisted death and conventional suicide.”

Janz, who also heads up the end-of-life ethics committee at the Council of Canadians With Disabilities, believes legalization of assisted suicide has devalued the lives of thousands of vulnerable people and placed them “in imminent danger.”

Canadian Redemptorist bioethicist Fr. Mark Miller despairs over how quickly safeguards promised when the assisted dying legislation passed are falling away. He is troubled by the lack of reporting standards.

“The very safeguards that were put into the Supreme Court decision — number one, that palliative care should be available for everybody — are totally ignored,” he said. “We’re not interested in safeguards. We’re interested in getting rid of people.”

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