This blog post follows my earlier posting about Balancing Access to Physician Assisted Dying and Protecting the Vulnerable
The following op-ed with David Baker was first published on the Globe and Mail website on February 27, 2016. We also added a short note in relation to attempts by some colleagues to impose changes to our text after publication.
Assisted Dying Report Goes Beyond Scope, Ignores Evidence
David Baker and Trudo Lemmens
Published Globe and Mail Saturday, Feb. 27, 2016
David Baker is a constitutional lawyer who represented the national disability groups in Rodriguez and Carter. Trudo Lemmens is Professor and Scholl Chair in Health Law and Policy at the Faculty of Law of the University of Toronto
It’s more than a year since the Supreme Court of Canada decided that Canadians have a right under our Charter of Rights and Freedoms to receive physician assistance in dying. Effective June 6, physician-assisted death will be a funded part of medicare. Parliament has until that date to decide precisely who will be eligible, and what safeguards should be in place. The court foresaw it enacting a “complex regulatory regime” of “carefully designed and monitored safeguards.” Unfortunately, the federal report released yesterday recommends exactly the opposite, and proposes the world’s most open-ended regime with arguably the lowest safeguards.
While the Carter case was moving through the courts, the province of Quebec was engaged in a lengthy legislative process of public consultation and study that resulted in its Act Respecting End-of-Life Care, commonly known as Bill 52. In the end, Bill 52 passed by unanimous vote of the Quebec Legislature. Under Bill 52, adults who suffer from a serious and incurable illness, who are in an advanced state of irreversible decline in capability, who are experiencing constant and unbearable pain, physical or psychological suffering, and who are at the end of life may obtain end-of-life care, which includes a right to palliative care as well as medical aid in dying. After due consideration, Quebec decided against legalizing both medical aid in dying for children and people with advanced directives, or living wills.
Finally, the law provides for a pretty good review process, which unfortunately takes place after the person dies rather than before.
Following the court’s decision in Carter, the federal government appointed an impressive advisory panel to consult nationally, research practices in other countries and recommend legislation. Unfortunately, the new government removed its authority to make recommendations, resulting in a report that is full of evidence, but apart from a passionate call for Canada to provide its citizens with palliative care, bereft of recommendations.
A panel initiated by Ontario, with informal involvement from some other provinces, suffered no such fate. Short on research, evidence and consultations, in a period of 15 weeks it made nothing but recommendations. Firstly it made the erroneous finding that no federal legislative action was required in response to Carter, it went on to recommend two physicians operating under guidelines from their regulatory colleges as a key safeguard, without recommending any other prior review,(*) and then recommended the federal government expand the Carter eligibility criteria to include children, persons with mental disorders and persons choosing to die at some future point by advanced directive.
The Trudeau government set to work by taking the unusual course of appointing a joint committee to review the issue composed of senators and Members of Parliament. Yesterday it presented its report. It was noteworthy the senators, who will not have to explain their position to Canadian voters, supported as a block the majority position, while there was a strong dissenting report from the Conservative MPs and a thoughtful “Supplementary Opinion” on behalf of the NDP members.
The majority of the parliamentary committee seeks to expand the criteria for physician-assisted death way beyond what was required by Carter or Bill 52. It includes mental-health conditions and all other disabilities, including developmental disabilities, autism, acquired brain injuries, fetal alcohol syndrome, not to mention blindness and deafness.
Essentially all disabilities can be included in the open-ended criteria for access, extending the law beyond the persons with irreversibly declining capacities at the end-of-life that the Supreme Court ruled upon, and disregarding the court’s determination that “psychiatric disorders” were expressly excluded, as well as children, even if children would only have access three years after the new legislation is introduced. The committee further recommends access by advanced directive for people suffering from dementia, which most agree would create a practical and ethical minefield.
The committee disregarded strong evidence (detailed analyses as well as various case reports) from Belgium and the Netherlands that confirms vulnerable people are put at risk when vague and expanding access criteria are employed. The risk worsens when the regulatory system relies on individual physicians for determining access and for assessing competency of patients.
Physician-assisted death in those countries is increasingly being performed on people who are lonely and are concerned about becoming dependent on others, people who are tired of life, and people suffering from mental-health conditions, including depression, anxiety, schizophrenia, eating disorders, autism, post-traumatic stress, and even complicated grief.
In many analyzed euthanasia cases, treatment options were available but not used. Reports from those countries raise questions about how some physicians assess competency, and about how vulnerable patients have been able to shop around until they find a physician who, having had no prior therapeutic relationship with them, are willing to end their life.
In response to recent controversies, Belgian and Dutch experts, commentators and some political parties have called for a reconsideration of their open-ended, after-the-fact review approach. The committee has received documentation of this evidence and these recommendations, yet it opted to recommend less rather than more safeguards than in these countries.
While both the Conservatives and NDP committee members make strong statements about the need for a right to palliative care comparable to that offered in Quebec, the majority merely repeat platitudes heard many times before about studying the problem, without recommending that Parliament act immediately to ensure palliative care is adequately funded by the Canada Health Act.
Imagine that Canada would become a country where people, including children, receive a physician-assisted death for lack of access to appropriate palliative or other health care.
(*) Note re public ‘correction’ by the Globe and Mail: Following the publication of our op-ed, the Globe & Mail received complaints from some members of the Provincial Territorial Expert Advisory Group. The G&M accepted to publish a letter to the editor by Maureen Taylor and Jennifer Gibson, co-chairs of that Committee, through which they were given an opportunity to voice their disagreement. The letter contains, in our view, inaccuracies, including the argument that no federal action is required, which David Baker pointed out in an e-mail to the G&M, but which have not been addressed. Two members of the committee (co-chair Maureen Taylor and member Jocelyn Downie) were not satisfied with this opportunity to respond publicly. They insisted that the G&M publish a host of 'corrections' to our op-ed.
Several of the complaints related to issues of interpretation, including of the Carter case; another to our opinion that the federal government had to act following Carter. One of the most striking complaints was the suggestion by MT and JD that our sentence about growing problems with euthanasia practices in Belgium and the Netherlands (clearly our interpretation, but based on my detailed analysis of publicly reported cases, peer-reviewed studies, interviews with those involved in the practice, etc published in Dutch, French and English) was 'wrong' and required an official ‘correction’ because the evidence had, in their words, been ‘tested in the crucibles’ of various esteemed committees (in most of which at least one of them played a leading role); and had been evaluated by the trial judge (now more than 4 years ago; and as those involved in the Carter case know, the presentation of the evidence at the trial level was dominated by the plaintiffs and suffered from procedural issues) and the Supreme Court (which does not re-consider in detail the evidence assessed by the trial judge, and in this case even explicitly rejected fresh Belgian evidence because it related to cases involving psychiatric disorders and children, which the SC considered to be outside the reasons of the case).
The Public Editor of the Globe analyzed the complaints in detail, rejected most of them off-hand because they either related, in her opinion, to issues of ‘interpretation’ or because the statements could be considered ‘fair comment’. She invited us to respond to a few of the complaints, accepted our points about all but one. She agreed with MT and JD that the following original sentence in the op-ed was not entirely correct: “it [the PTEAG report] went on to recommend that two physicians operating under guidelines from their regulatory colleges represented all the safeguards required.” The public editor suggested that the report also recommends other safeguards to be developed by legislation, including the development of 'palliative care' and the signing of the consent form by a witness. We proposed in the end, without agreeing with this assessment, the following change to settle the issue: “it [the report] went on to recommend two physicians operating under guidelines from their regulatory colleges as a key safeguard.” We still maintain that the assessment by the two physicians is the only key ‘safeguard’ recommended in the report, since the signing of a form by a witness is already common practice in many end-of-life situations. The report recommends that palliative care should be further developed but it explicitly rejects using palliative care as a safeguard. Indeed, in other jurisdictions, experts have proposed to introduce a 'palliative care filter', which would make access to assisted dying dependent on the availability and of palliative care services. A vague recommendation for better palliative care services is clearly not a safeguard; it is a very open-ended suggestion for further health care policy-making. The only real 'safeguard' in the PTEAG report, i.e. something that protects against premature and inappropriate life-ending actions and that ‘guards’ us against it, is the review by two physicians. The report focuses in general on providing access to PAD, and on protecting physicians who are involved in the practice from legal sanction. There is no meaningful attention to safeguards.
It is in our view remarkable that academic colleagues feel the desire to interfere with the public expression of opinions and legal interpretation in this important public debate that affects all Canadians, instead of addressing the evidence and arguments put forward by colleagues.
