Written By Olivia Earl Read on to understand a brief history and update on what the current legislation regarding medical assistance in dying covers, as well as a summary of opposition to the recent Bill C7.
Sue Rodriguez was 41 when she was diagnosed with amyotrophic lateral sclerosis, otherwise known as “ALS” or “Lou Gehrig's disease”. ALS is a neurodegenerative disorder where the neurons responsible for communicating between the muscles and the brain die. Voluntary movements such as chewing, talking, walking, and breathing all become more difficult as ALS progresses in a patient. The long-term prognosis is grim, as most people diagnosed with ALS are likely to die within the following 3-5 years, usually by respiratory failure.
Two years after Rodriguez received the diagnosis, she went to court to ask for the right to assisted death - forcing her to live on went against her charter of rights to life. As Rodriguez said, “if I cannot consent to my death, whose body is this? Who owns my life?” The court ruled against her 5 v 4. In the end, Rodriguez ended her own life with the help of an anonymous physician.
While there have been other cases of individuals engaging in assisted suicide or “mercy killings”, the most notable includes Carter v Canada in 2015. Kay Carter was diagnosed with degenerative spinal stenosis, and Gloria Taylor, like Rodriguez, had been diagnosed with ALS, similarly. The argument provided in court was that laws prohibiting physician-assisted death were ableist and discriminatory against disabled people. The result of the court case, unanimously, decided in favour of Carter and Taylor. The Government of Canada was provided one year to make the amendments to the criminal code and these changes took effect June 2016. Federal legislation officially passed, stating that competent adults could request medical assistance in dying, with specific regulations in place.
Past and Current Eligibility Requirements
Medical Assistance in Death (MAiD) has been widely debated through various perspectives, from that of human rights and through the lens of religion. Here, we will provide an overview of MAiD throughout its legalization and how it is utilized in a Canadian context.
Given the nature and societal implications of MAiD, it is highly regulated with various requirements and safeguards for a patient before they can access MAiD. The past legislation, implemented in 2016, was laid out by the federal government. The 2016 framework that had been provided outlines the following eligibility criteria for a patient to access MAiD:
Be 18 years or older
Be capable of making healthcare decisions
Have a grievous and irremediable medical condition, which means
The patient has a serious and incurable illness, disease, or disability
The patient is in an advanced state of irreversible decline in capabilities
The patient is enduring physical or psychological suffering, caused by the medical condition or the state of decline, that is intolerable to the person
The patient's natural death has become reasonably foreseeable
Provide informed consent to MAiD after having been informed of the means that are available to relieve their suffering, including palliative care
These eligibility requirements create the main framework for determining if a patient can access MAiD in their province or territory. As simple as they may appear, it is not a clear-cut process to determine if someone meets all of these criteria. For example, in Ontario, a physician or nurse practitioner must first do an assessment to see if the patients can qualify for MAiD. If they believe so, another physician or nurse practitioner must do an independent second assessment as well.
Specifically regarding the eligibility requirement of “being capable of making healthcare decisions”, the provincial government developed an assessment for capacity to consent for MAiD. Individuals are capable to consent to treatment if they have the ability to understand the information that is relevant to making a decision and the ability to appreciate the reasonably foreseeable consequences of a decision or lack of decision. The assessment has been adapted to meet the needs of both verbal and nonverbal patients. The requirements and eligibility for MAiD were thoroughly considered before being implemented throughout the country. Yet, some advocates argue that the eligibility requirements are too restrictive and go against the rights and freedoms of disabled Canadians. This is where Bill C7 has come into effect.
March 17th, 2021: Implementation of Bill C7
On March 17th, 2021, the legislation from Bill C7 was passed: “the law no longer requires a person’s natural death to be reasonably foreseeable as an eligibility criterion for MAiD”. This was a direct response to the decision of a Superior Court of Quebec case in 2019, Truchon vs. Canada (Attorney General). In this case, it was determined that the eligibility criterion of “reasonable foreseeability of natural death” was unconstitutional. These updated safeguards for those whose death is not reasonably foreseeable are the following:
One of the two practitioners who provides an assessment must have expertise in the medical condition that is causing your unbearable suffering.
If neither of these practitioners have this expertise, another practitioner with expertise in your medical condition that is causing your suffering must be consulted in the assessment process.
You must be informed of available and appropriate means to relieve your suffering, including counselling services, mental health and disability support services, community services, and palliative care, and you must be offered consultations with professionals who provide those services.
You and your practitioners must have discussed reasonable and available means to relieve your suffering, and all agree that you have seriously considered those means.
Your eligibility assessment must take a minimum of 90 days, unless the assessments have been completed sooner and you are at immediate risk of losing your capacity to consent.
Immediately before MAiD is provided, the practitioner must give you an opportunity to withdraw your request and ensure that you give express consent to receive MAiD.
However, while death does not need to be reasonably foreseeable for a patient to access MAiD now in Canada, mental illness as a sole underlying condition is still excluded as a reason for accessing MAiD. Throughout the next two years, “the Government of Canada will hear from experts and develop safeguards and protocols for people who seek access to MAiD, but whose sole underlying medical condition is a mental illness”. Bill C7 did not just impact those whose death is not reasonably foreseeable. A second new implementation includes the waiver of final consent for those whose death IS reasonably foreseeable. The waiver of final consent states that if your death is reasonably foreseeable and you had decision-making capacity:
When you were assessed and approved to receive MAiD
When your practitioner advised that you are at risk of losing capacity to provide final consent
When you made a written arrangement with your practitioner in which you consent in advance to receive MAiD on your chosen date if you no longer have capacity to consent on that date
If you meet the criteria, as a patient you are able to utilize the waiver of final consent in case there is possibility you may lose your ability to consent as a result of your illness or disease progression. However, it is also noted that “any arrangement for the waiver of final consent will be considered invalid if, at the time that MAiD is to be provided, you no longer have capacity and you demonstrate refusal or resistance to the administration of MAiD by words, sounds or gestures”. While some people and organizations have applauded this new legislation, others feel that it is not appropriate to implement such legislation. Two arguments that have developed as popular discourse against this legislation change include: (1) the government is reinforcing ableism within the medical system with this legislation, and (2) the slippery slope argument, which has always been present in discussions of MAiD. Both will be discussed in the next two sections.
Ableism and Medicine: What About Bill C7?
These proposed changes have been met with fierce criticism from various disability justice and activism organizations across the country. In fact, more than 300 organizations have publicly voiced concern about the bill and what it will reinforce in the healthcare system. Within these organizations, many people believe the bill exploits an already vulnerable population who currently face significant barriers accessing healthcare as is. Some activists argue that this bill will make death more accessible for other disabled Canadians, rather than an adequate standard of healthcare that could improve the quality of their livelihood. An example of this includes the experience of Roger Foley. In 2018, then 42 year old Ontario resident Roger Foley had been recuperating from injuries and poor health that was a result of negligence from his government selected home care provider. Foley simply wanted to be able to live at home with proper supports for his grievous and irremediable condition, cerebellar ataxia. Cerebellar ataxia is a brain disorder that limits Foley’s physical capabilities such as moving his arms or legs, making activities of daily living very difficult, if not impossible, to perform on his own. As a direct result of the injuries and poor health Foley suffered by the home care provider, he left and found himself at a London, ON hospital looking for support. There, Foley alleged that healthcare officials would “not provide him with an assisted home care team of his choosing, instead offering, among other things, medically assisted death”. This is merely one example of concerns that disabled people have with the legislation that has come into place.
Disability justice and activism organizations predict that there will be further challenges to Bill C7 that advocate for the equality of disabled Canadians in the matter of MAiD. While MAiD is an incredibly complex issue that will prompt varying opinions, it is incredibly important to listen to and amplify disabled voices during this time and hear their concerns regarding accessibility to MAiD.
Competency, Capability, and the Slippery Slope: Advanced Request for MAiD Prohibited
Mirroring discussions about MAiD access for mental health issues, there is a current discourse that suggests we should not allow advanced directives for patients. As defined by Dying with Dignity Canada, “an advanced directive request for MAiD would be strictly a request for an assisted death that’s made by a competent person that could be honoured later, after they have lost capacity”.
Advanced requests for MAiD go directly against one of the requirements of eligibility for accessing MAiD - that an individual must be capable of making healthcare decisions. While it is recognized that an individual can be competent and capable of making decisions at the time the advanced directive is set, the issue lies at the patient's competency at the moment MAiD is performed. A patient with late stage dementia would be deemed incomcpetent and unable to provide informed consent at the time of MAiD implementation, a critical requirement for accessing the service. This has led to serious discussion amongst the Canadian society and physicians who are torn between how to proceed on the matter.
Discussion points that develop from the concept of advanced requests for MAiD include the argument of the “slippery slope” and ethical/ moral dilemmas with the direct actions of those intervening on the patients behalf.
The slippery slope argument suggests that implementing advanced requests for MAiD would cause a chain reaction to occur. In the end, there would be considerable undesirable events that occur as a direct result of the initial action (allowing advanced requests). However, a “slippery slope” argument provides no evidence for the outcome it proposes. In the Netherlands where advanced requests are permitted, research was done to investigate if there was any basis for the argument associated with advanced requests:
Dutch physicians had no increased interest in participating in MAiD.
Decrease in life ending acts without explicit patient consent.
No significant change in the characteristics of those accessing MAiD.
No increase in those proportion of MAiD patients who are elderly or have “less serious” illness or disability.
Trust in physicians remained high, even in those who opposed MAiD.
Even with advanced requests are permissible, dementia diagnoses only made up 2% of MAiD deaths.
The slippery slope argument provides no preliminary evidence that advanced requests for MAiD would actually lead to undesirable outcomes. However, it is still currently highly debated in Canada and more research must be done to fully understand the possible consequences of allowing advanced requests.
As mentioned, ethical and moral dilemmas also stem from advanced requests and the intervention of MAiD. There may be ethical differences between MAiD and refusing or withdrawing from a life saving treatment. To understand this point of view, recognize that “a healthcare intervention without consent constitutes assault, except in emergencies where treatment is necessary to preserve life, but where the patient is unable to provide consent and their wishes are unknown”. Respecting a patient's wishes when they are able to consent is integral for maintaining patient autonomy over their bodily integrity. However, the Council of Canadian Academies also recognizes that advanced requests “for MAiD is a request for an intervention that specifically ends the life of another person” and researchers on their council “argue that is it important to abstain where there is uncertainty about ongoing consent”. Given the seriousness of performing medical intervention without clear consent and the permanency of MAiD, significant weight is given to these ethical considerations when determining if advanced requests should be permissible for those who would lose their capacity to consent such as those with late stage dementia.
It is clear that advanced requests for MAiD is not a simple matter to discuss. Many facets of healthcare, ethics, patient autonomy and bodily integrity intersect when determining the future of advanced requests. It remains to be seen in Canada what the outcome of the movement for advanced requests will lead to.
MAiD: A Conclusion to the Overview
MAiD, even when already legalized in Canada, is still highly debated on the grounds of ethical and moral issues within our country's citizens. Even as controversial as it has proven to be, MAiD has been determined to be essential to respect the rights and freedoms of Canada’s population. Individuals such as Sue Rodriguez, Gloria Taylor and Kay Carter were critical in the development of MAiD being legalized. These women stepped up and advocated for not only themselves, but the rights and freedoms of a large population of Canadians who wanted to see more people have access to MAiD. MAiD can be a topic that is difficult to discuss. However, given its significance in respecting the rights and freedoms of Canadians who want to access it, it is important to understand MAiD and support the provision of such service in the safest manner possible.
Council of Canadian Academies, 2018. The State of Knowledge on Advance Requests for Medical Assistance in Dying. Ottawa (ON): The Expert Panel Working Group on Advance Requests for MAID, Council of Canadian Academies.