In my role as CEO of Dying With Dignity, I am proud to advocate for end-of-life rights and have learned that Canadians overwhelmingly support MAID
Shortly before I joined Dying With Dignity Canada (DWDC), my friend Bill was diagnosed with Amyotrophic Lateral Sclerosis, or ALS. As a former ALS Canada volunteer, I was aware of the challenges he would face in the days ahead and we talked, more than once, about the option of medical assistance in dying.
My role as CEO of DWDC has brought me into contact with thousands of people like Bill across the country – people who want to retain their right to choice and dignity at the end of their lives and who want to end their suffering on their own terms, when it becomes unbearable. This is a time when many feel they are losing their autonomy. Speaking with and on behalf of these people is an honor and a responsibility that I do not take lightly.
Currently, the Special Joint Committee on Physician-Assisted Dying, a joint committee of MPs and Senators, is undertaking a review of Canadian MAID legislation and its application. The committee examines advance requests, mature minors, mental illness, the state of palliative care in Canada and the protection of Canadians with disabilities. I was delighted to be able to address the committee earlier this month on behalf of those across Canada who are seeking to make the choice for their own end of life. MAID isn’t the right choice for everyone, and that’s okay. At DWDC, our vision is that people across Canada have the right to choose their good death, regardless of their decision.
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The past few years have seen the case progress through the legal system, but there is still work to be done. In 2015, the ban on medical assistance in dying was overturned by the Supreme Court of Canada’s decision in Carter v. Canada. The court found that the Criminal Code provisions that made it a crime to assist someone to end their life violated the Canadian Charter of Rights and Freedoms by infringing the right to life, liberty and security of the person by denying access to assisted death to a competent adult who was suffering intolerably. Then, in June 2016, Bill C-14, Canada’s MAID Act, was passed, allowing eligible Canadians to request assisted dying.
Almost immediately, some felt that the new laws were too restrictive and did not reflect the magnitude of the Carter decision. A new challenge has been launched with Truchon and Gladu c. Canada, and in September 2019, the Superior Court of Quebec ruled that the requirement that death be “reasonably foreseeable” not only violated the right to life, liberty and security of the person, but was also in conflict with the equality rights of section 15 of the Charter. The government chose not to challenge this decision, and in March 2021 Bill C-7 was passed, revising MAID legislation to remove the “reasonably foreseeable” requirement.
This modification removed an eligibility criterion which was in fact an obstacle to access rather than a procedural safeguard. Parliament went further by providing that the exclusion of people with mental illness as the sole underlying condition would one day be challenged in court and found to be discriminatory. The end of this exclusion in March 2023 will bring us back to the Carter decision, which stipulates that Canadians must be able to access MAID if they have a serious and irremediable medical condition causing lasting and intolerable suffering that cannot be relieved by means acceptable to you, and does not exclude people with mental illness.
Today, 86% of Canadians support the Carter decision, and a staggering 82% support the removal of the “reasonably foreseeable” death eligibility requirement introduced last year. The Canadians do not seem to be in conflict with the AMM; they overwhelmingly support the law and continue to consider changes that expand access for those who are not eligible. So when I hear the subject of AMM described as “controversial”, I confess that I am surprised.
Recently, stories have circulated claiming that people are forced into MAID or that those who are unable to access supports like safe and affordable housing choose to have MAID instead. Or that Canadians wouldn’t want MAID if they had access to quality palliative care. This is simply not true and there is no evidence that I know of to back up these claims.
According to Health Canada, 80% of Canadians who request assistance in dying have also had access to palliative care. In situations where palliative care was not available prior to MAID, it was available to the patient 88.5% of the time. Can we improve access and quality of palliative care, and improve income and social supports for people with disabilities and marginalized populations across Canada? Sure. We can always do better.
But should we deny those who are eligible the ability to access MAID because of these system shortcomings? Of course not. People should be able to make the choices that best match their values, beliefs and needs at all stages of their lives.
READ: Assisted dying was supposed to be an option. For some patients, it seems to be the only one.
The decision to pursue assisted death is not taken lightly. A request for MAID is initiated by an individual, and only that individual can consent to the procedure. Consent must be informed, that is, the person must have received all available information about forms of treatment and options to relieve suffering, including palliative care. They must meet the eligibility criteria and have been assessed by two independent practitioners. The rigorous assessment process includes procedural safeguards, assessment of capacity and ensuring that an individual is not coerced into applying for MAID. The person can change their mind at any time during this process.
Nurse practitioners and physicians who assess and provide MAID do so with care and thought. They work within the parameters of the law and take their job seriously. It’s compassionate and important work, and they do it because they believe in the right of those who are eligible to seek assisted death when their suffering becomes too great.
You’re probably wondering if my friend Bill had an assisted death. The most important question is, “Did Bill have the choice to request assisted dying if he wanted to and when he wanted to?” In the end, that’s what matters most to me. Frankly it is what makes my role and the work of Dying With Dignity Canada so important. We provide choice, autonomy and an end to suffering, including assisted death, for those who choose one.
I know Bill would be proud of me.
Helen Long is the CEO of Dying with Dignity Canada and a proud advocate for medical assistance in dying and end-of-life choices. Dying With Dignity Canada is a national human rights charity committed to improving the quality of dying, protecting end-of-life rights, and helping people across Canada avoid unwanted suffering.
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