The Carter decision: where do people with disabilities go from here?

By Elsa Ascencio, Nilofar Ahmadi and Tess Sheldon

In February 2015, the Supreme Court of Canada issued its landmark decision in Carter v Canada, which raises questions that are important for people with disabilities.

On June 4, 2015, ARCH Disability Law Centre, with the Law Society of Upper Canada, co-hosted an event called “Access Awareness: The Carter decision on physician-assisted suicide: Where do people with disabilities go from here?”

About 177 people attended the event, including members of the disability community. Forum participants explored the complex ways that Carter impacts persons with disabilities. Rather than being about whether the court “got it right”, discussion at the forum focussed on how people with disabilities should be involved in shaping the law about physician-assisted dying.

Carter v Canada: background

The case was brought by Ms. Gloria Taylor, who had been diagnosed with amyotrophic lateral sclerosis (ALS) and Ms. Kay Carter, who had been diagnosed with spinal stenosis.

They challenged the constitutionality of the sections of the Criminal Code which prohibit physicians from aiding another person in ending his or her life. The Supreme Court of Canada ruled that the prohibition on physician-assisted suicide violated Section 7 of the Canadian Charter of Rights and Freedoms. Section 7 states:

“Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice.”

The court found that the prohibition on physician–assisted suicide violated the right to life, liberty and security of the person. According to the court, the law denies people the right to make vital medical decisions and that this “causes enduring suffering that are intolerable to the individual in the circumstances of his or her condition”.

The court reiterated that the main objective of the prohibition was to protect people from being induced to commit suicide when they are vulnerable. However, it found that the sections of the Criminal Code were “overbroad,” because they affect people whom the law was not intended to affect, including people who have made a “considered, rational and persistent wish to end their own lives”.

The court found that this violation could not be justified. It gave the federal and provincial governments 12 months to write new laws that will describe when, where, and how doctors can provide assistance in ending a person’s life.

The federal and provincial governments can now decide the safeguards to be put in place to protect persons with disabilities. The court emphasized that the rights of patients and the rights of physicians will need to be reconciled when governments are creating the new law.

Clearly the community of persons with disabilities has a keen interest in ensuring that their concerns and hopes are addressed.

Lingering questions in Carter

Grievous and irremediable: overbroad definition

An analysis of Carter leaves some unanswered questions for individuals with disabilities. In Carter, the court found that physician-assisted suicide could be sought only by a competent adult person who: i) clearly consents to the termination of life; and ii) has a grievous and “irremediable medical condition” that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.

Dr. Joan Gilmour, a professor at Osgoode Hall Law School, highlighted one concern from some members of the disability community as to what constitutes as “grievous and irremediable”. There is no settled definition for the term, nor is there a settled definition for the term “suffering”.  Since the terms are so subjective, some people from the disability community are concerned that this broad definition could sanction an attitude that their lives aren’t worth living.

Assessing capacity to consent: unclear impact on mental illness and minors

The judgment permits assisted suicide on the basis of psychological suffering. Dr. Gilmour noted that because physician-assisted suicide is contingent on capacity to consent, it might put people with mental health issues at particular risk. It is unclear how consent will be assessed for persons with mental health issues.

Dr. Gilmour further noted that Carter still leaves questions unanswered for minors. Since there is no minimum age to consent to treatment, it is not clear how the ruling in Carter applies to minors with disabilities.

Post-Carter: what should the future look like?

There are other alternatives to assisted suicide

Michele Gardiner, a member of the Executive of Citizens with Disabilities, said that most people with disabilities do not identify as being “ill”, even if their life expectancy is shorter than someone without their disability. Some people with disabilities worry that they will be unduly targeted for physician assisted dying. There are alternatives to assisted suicide, such as cutting down on waiting lists for services and supports, having a stronger family support system and better counselling.

Assisted suicide must only be made available after a detailed and individualized plan for high quality palliative care has been thoroughly presented, considered and refused. She reinforced her message to the disability community that “life will get better”.

Michael Bach, the Executive Vice-President of the Canadian Association for Community Living (CACL), raised concerns about the decision’s fundamental assumptions about the quality of life of persons with disabilities, leading to the devaluation of their lives. He agreed with Gardiner about the importance of alternatives, like the appropriate provision of disability-related supports and services. Bach argued that people with disabilities suffer not because of the “grievous and irremediable condition” but because of the lack of disability-related supports and services. Bach stated that the lack of care should have been the main concern in Carter.

If we focus on implementing better care for those in need, then there may not be as many patients who would want to die rather than live. He offered examples of crucial safeguards following the court’s judgment to limit access to physician-assisted suicide.

Should assisted suicide have high limitations?

Kerry Bowen, a clinical ethicist at Mount-Sinai Hospital, argued that that new legislation should increase the threshold of capacity and address concerns from some members of the medical community. Bowen explained that increasing capacity may serve as a safeguard for some members in the disability community. However, Bowen noted that it is difficult to discuss limitations if there isn’t any clear structure with the assisted-suicide scheme. There is hesitation amongst some doctors as to whether they will be obligated to perform assisted-suicide, despite their own reservations.

Moving forward, the Carter decision raises many unanswered questions for the disability community. It leaves a grey area for people with disabilities. However, participants of ARCH’s Access Awareness Forum made clear that there must be dialogue between community groups and policymakers, to make sure the voices of members of the disability community are heard by the government as it legislates in the area of assisted dying following the Carter decision.

It is critical to ensure that government action balance the protection of vulnerable members of the community of persons with disabilities, while also giving life to their Charter protected rights.

Elsa Ascencio and Nilofar Ahmadi are law students at ARCH Disability Law Centre. Tess Sheldon is a staff Lawyer.