Thank you, Mr. Chair, honourable senators and members of Parliament.
In order to arrive at our recommendations to this committee, the Canadian Association for Community Living asked for advice from People First of Canada, the national association of people with intellectual disabilities that advocates for themselves. They told us in no uncertain terms that they want two things. First, they want access to physician-assisted suicide without discrimination on the basis of disability. People with intellectual disabilities are three to four times more likely to die from preventable deaths than the general population, and heart disease and cancer are the leading causes. People with intellectual disabilities are dying painful and difficult deaths with intolerable and enduring suffering. They want access on the same terms as anyone else.
However, they told us just as passionately that they want absolute assurance that there will be safeguards to protect their inherent right to life and that they'll have access to those safeguards without discrimination on the basis of disability. They don't want assisted death. What they need is support and good care, because disproportionately they face poverty, lack of support, or abuse.
While much has been said in the wake of Carter about the right to choose, we believe it's equally important to give as much focus to the other half of the equation that the Supreme Court insisted must be balanced: protecting the right to life.
You know, it's odd. I feel a bit awkward as I talk about the inherent right to life, because the moment the words are out of our mouths, it's often taken, it seems, that we're trying to roll back hard-won rights to choice, like reproductive rights for women. Our motivations couldn't be further from the truth. It was in fact a small committee of people with intellectual disabilities who led their legal counsel into the Supreme Court of Canada 30 years ago this year to secure the right not to be sterilized without their consent. They won in the Eve case, which set an international standard.
We know what the right to choose is all about. We've been on the front lines of that struggle for decades. But we must also stand firmly on the vantage point of the inherent right to life, its protection forged in the dark shadow of the atrocities of World War II, in order to give it indisputable recognition and obligation by states parties: the Nuremberg Code, which set the new standard for what voluntary consent now means in medical ethics and physician behaviour, the Universal Declaration of Human Rights, the International Covenant on Civil and Political Rights.
It's true that the sanctity of human life finds a source in world religious traditions, but let us not forget that it is in the cornerstone international human rights instruments of the 20th century and in our Charter of Rights and Freedoms that the inherent right to life finds its clearest obligations on secular grounds, for Parliament and for all Canadians. So why must we design a system for physician-assisted suicide from both vantage points, not just the right to choose, but also the inherent right to life?
On Monday of this week, Flemish Radio and Television Broadcasting Organization in Belgium broadcasted a story brought to light by two sisters of a young woman who was euthanized in 2010 under the law in that country. Following the end of a romantic relationship, she was in a mental health crisis and was in treatment with a psychiatrist. Two months before her life was ended, the psychiatrist diagnosed her with autism and could then conclude that she had an irremediable medical condition and that her psychological suffering was unbearable. She was put to death. When her traumatized family later asked her physician why he had confirmed the psychiatrist's assessment, he admitted that he was not in agreement but that he had no choice, stating that he thought Tine Nys “shopped” with too many doctors.
There were two other cases reported in the medical journals. In Oregon, an 85-year-old cancer patient with worsening dementia requested physician-assisted suicide, but her psychiatrist believed she was being pressured by her family. Nevertheless, she was approved by a psychologist. In the Netherlands, a wife who no longer wished or was not able to care for her sick elderly husband gave him a choice between euthanasia or admission to a nursing home. Afraid of being left to the mercy of strangers in an unfamiliar place, he chose euthanasia, and his doctor ended his life.
When the Carter case was first heard at the B.C. Supreme Court, Justice Smith knew enough of such cases to very carefully examine the extensive evidence before her about the types of safeguards that could be put in place, given the obligation to protect the right to life of vulnerable persons. She concluded her analysis with the following list: mandatory psychiatric evaluation to ensure capacity for informed consent; disqualification of major depressive disorder; minimum waiting period; a second independent physician with expertise about the condition; required palliative care consultation; an advance expert review panel that must issue a decision in 48 hours; and a patient right to appeal the review panel's decision.
It was the legal counsel for the plaintiffs in Carter who presented this list to the court—the plaintiffs including Gloria Taylor and the British Columbia Civil Liberties Association—as their recommendations for effective safeguards that could justify exceptions to the Criminal Code prohibition.
Immediately following the presentation of that list, in her decision, the trial judge stated her conclusion, which was also quoted by the Supreme Court to justify its own decision:
...the risks inherent in permitting physician-assisted death can be identified and very substantially minimized through a carefully-designed system imposing stringent limits that are scrupulously monitored and enforced.
We stand 100% behind the recommendations of the plaintiffs, which we think can be best summarized into six core pillars of a statutory safeguard system to be embedded in the Criminal Code.
One, only adults can access. We strongly urge that mature minors not be eligible. We don't deny the suffering of children and adolescents, but we believe that palliative care is the answer in those situations. This is a decision that children and adolescents and their families should not have to make. If you have to be majority age to vote in this country, surely this is a limit that we can impose.
The second is to define “grievous and irremediable medical condition” as terminal end-of-life conditions. We urge the committee to be guided in large part by the Quebec legislation, with emphasis on incurable serious illness, and advanced state of irreversible decline in capability, and also look to the specific definitions that have been proposed in the David Baker and Gilbert Sharpe draft bill, which has been submitted to this committee, and also to the clarifications that David Baker sent by letter to this committee yesterday. If instead Parliament were to follow the recommendations of the provincial-territorial advisory group on this matter, what happened to Tine in Belgium in 2010 would happen in Canada. Moreover, the cause of her death, by the advisory group's recommendations, would be registered on her death certificate as autism. Autism would show up as a killer in Canada's vital statistics, as would Down's syndrome, bipolar disorder, cerebral palsy, and many other conditions, which it's true are serious or very serious, which is the definition proposed for defining what “grievous and irremediable” should mean, by the provincial-territorial advisory group. They turned to the Oxford dictionary for that definition. We think Parliament can and must do much better than that.
The third speaks to enduring and intolerable suffering in the circumstances—and I underline “in the circumstances”—of the patient's condition. This is a key criterion that Carter specifies: one's suffering and circumstances cannot be anticipated in advance. This criterion makes clear that advance directives should not be—we believe cannot be—on the table, and we urge Parliament to make that explicit in the Criminal Code. Capacity to consent must be a criterion right up to the moment of taking a lethal dose.
The fourth concerns review by two physicians to determine if the criteria are met—independent physicians—at least one with expertise about the condition, and the requirement that they engage other professionals as might be needed for diagnosis, prognosis, and exploration of all the causes of the person's suffering, which is the job we rely upon and vest our trust in physicians to do.
The fifth is about mandatory vulnerability assessment. This must be undertaken in response to each request, to determine if the factors that could induce the patient to commit suicide in a time of weakness are in fact motivating the request. We've outlined this in more detail in our brief to you and also in a background paper on vulnerability assessment.
The six and final point concerns an independent advance review panel to consider the request and reports on capacity and other criteria, including vulnerability, from any physicians involved. Proposals for such a panel have been presented to this committee by David Baker and Gilbert Sharpe, and also yesterday by the Canadian Council of Imams. There's also strong support among Canadians for this safeguard. In an online survey of almost 13,000 Canadians, 53% supported this mechanism, and 54% in a poll released last week by the Canadian Association of Retired Persons.
It's also important to note that the treaty body monitoring the International Covenant on Civil and Political Rights, which Canada ratified in 1976, has repeatedly called for implementation of an advance independent review mechanism for physician-assisted suicide, because of evidence like Tine's, to ensure that states parties fulfill their obligations to protect the inherent right to life under article 6 of covenant.
Having such a panel in place would prevent doctor shopping, guard against vulnerable persons being induced to commit suicide, and—critically important, we believe—ensure physicians do not have to play two irreconcilable and, we believe, conflicting roles: on the one hand doing everything possible to assess and remediate medical conditions and patient suffering, and then on the other approving interventions intended to bring about the death of their patients.
Thank you for the opportunity to present before the committee this evening.