On September 11, Judge Christine Baudouin of the Quebec Superior Court issued a ruling that struck down parts of the federal and Quebec legislation concerning medically assisted dying, opening the door to a renewed debate on the sensitive issues surrounding medically assisted dying and end-of-life care. In her 187-page decision, Judge Baudouin ruled that the federal and Quebec laws both included critera that were too restrictive and contravened the landmark Supreme Court of Canada decision in the 2015 Carter case. She singled out the provision in the federal legislation that the patient be facing a “reasonably foreseeable death” and, in the Quebec legislation, that the patient be “at the end of life.”1
The case that led to Judge Baudoin’s ruling involved two severely handicapped individuals, Nicole Gladu and Jean Truchon, who were both denied access to a medically assisted death because neither of them was terminally ill. Gladu, who contracted polio as a child and now struggles with post-polio syndrome, and Truchon, who suffers from cerebral palsy, petitioned the court to put an end to their suffering and grant them access to a medically assisted death. The court agreed and gave the federal Parliament and the Quebec National Assembly six months to redraft their legislation to respect the Carter decision. She also granted the two petitioners the possibility of ending their lives within the same period.2
The decision came five years after the Quebec National Assembly passed legislation on end-of-life care. Recently, calls to review the legislation have been more and more persistent. The Superior Court ruling, if it is not appealed, will add additional pressure on governments, legislatures and citizens to take up the debate in the near future. Before embarking on a new round of discussions, however, it is important to recall the debates that led to the adoption of the current legislation.
Bill 52 Revisited
On June 5, 2014, the Quebec National Assembly adopted Bill 52, An Act Respecting End-of-Life Care. The legislation included new commitments toward access to palliative care and ushered in new access to medically assisted death. Where are we five years later? How have the new provisions regarding medically assisted dying been applied? How often have these procedures been used? These questions are all relevant because the new Coalition Avenir du Québec (CAQ) government, elected in 2018, has promised to hold public consultations to examine the possibility of enlarging the criteria for a medically assisted death to include individuals suffering from Alzheimer’s disease and other forms of dementia.
It is important to recall the exceptional manner in which the original debate was conducted in Quebec. The legislation was the fruit of a débat de société that lasted more than four years and took place under three different governments. Opinions were divided among the witnesses who appeared before the select committee of the National Assembly that studied the issue, and again on the floor of the legislature. Given the importance and sensitive nature of the subject, the members of the National Assembly were called on to vote according to their conscience. The final vote was 94-22, with the governing Liberal caucus divided. Several senior cabinet members voted against the bill.
In other parts of Canada the debate centred on the courts, leading to the groundbreaking Carter decision in 2015. In contrast, the debate in Quebec was led by the select committee, which I had the privilege of chairing during the public phase of its work. The goal was to listen to experts and citizens from across the province. With my colleagues from all parties in the Assembly, we crisscrossed the province, holding hearings in eight cities and hearing 239 witnesses. In addition, the committee received more than 6,500 replies to an online questionnaire and garnered extensive media coverage. Before setting out, we heard from 32 expert witnesses who helped shape the questions to be raised in the consultations. It was a unique experience for all the MNAs who participated. One remarkable aspect was that the majority of the witnesses were individual citizens who took the time and found the courage to share their sad and often difficult stories about deaths in their families.3
Once the hearings were completed in the spring of 2011, the hard work of crafting a final report began. It took the committee 51 working sessions before a unanimous report was tabled in the Assembly in March 2012.
Over the next two years, there were two elections which produced first a Parti Québécois and then a Liberal government. Despite these electoral distractions, legislation was prepared under the watchful eye of Véronique Hivon, the PQ minister responsible for social services and the former vice-chair of the select committee. Many more hours of debate ensued as legislators grappled with the challenges of translating notions such as “terminally ill” and “imminent death” into legislative terms. These were some of the criteria to be used to provide a framework for individuals seeking a medically assisted death.
The bill as it was finally adopted contained three main conditions: individuals seeking medical assistance in dying must be 18 years of age or older, be able to give their consent repeatedly to a doctor, and be in the final phase of a terminal illness. In addition, the Commission sur les Soins de Fin de Vie (Commission on End-of-Life Care) was created to monitor the application of the law. The commission is required to table an annual report in the Assembly, and its most recent report covers the period ending on March 31, 2018. Between December 2015 and March 2018, the commission received 2,482 requests for an assisted death, of which 1,664 were granted. The most common reasons for a refusal were that the patient did not meet the criteria (344 cases), died before the evaluation was completed (289), or changed his or her mind (128).4
Calls for a Review
It took more than a year after the legislation was adopted before the first medically assisted death occurred in Quebec in December, 2015. But before long there were calls to reopen the debate, especially as it regards people suffering from Alzheimer’s disease and other forms of dementia. The select committee had examined this question but had found no consensus, so it had recommended that the Collège des Médecins du Québec, the professional organization of Quebec’s physicians, study this question further.5 In January 2017, François Bonnardel, now the Transport Minister in the CAQ government but then an opposition MNA, hit a nerve with a Facebook post on his mother’s 80th birthday.6 Mme Bonnardel has suffered from Alzheimer’s for more than a decade; confined to a chronic care facility, she no longer recognizes the members of her family. Her son said that his mother, had she known the course of her illness, would have told him, “You will have a mandate to make decisions for my life one day, and I trust you, and I trust the doctors … to say that perhaps I am a burden on society. And I will let you make a decision that could end my life.”7
Bonnardel’s post and subsequent media interviews drew a great deal of attention to this issue in Quebec. Partly in response to this, the Minister of Health and Social Services at that time, Dr. Gaetan Barrette, formed a committee of experts to examine this question. Cochaired by the Public Curator, Nicole Filion, and Laval professor and ethicist Jocelyn Maclure, the group has examined whether the scope of medically assisted death should be extended to include patients who can no longer give their consent but who have previously expressed their desire and willingness to end their lives in certain circumstances. This anticipated consent would be a legal document such as a living will. Although their report has yet to be tabled in the National Assembly, it was reported in June that the group will make a favourable recommendation to widen access.8 Minister Barrette also asked the Commission sur les Soins de Fin de Vie to review the cases that were met with a refusal and reflect on whether the criteria should be reconsidered.9
Two court cases related to widening access to medically assisted dying also made headlines. As we have seen, the Gladu case raised the question of limiting access to medically assisted dying to those patients who were near the end of their lives. The Superior Court ruling placed its emphasis on individuals and their suffering, regardless of their prognosis of a “foreseeable death.” The court expressed its confidence that the existing system of granting consent under the supervision of physicians is sufficient protection for vulnerable patients.10
The second case involved Michel Cadotte, who was convicted of killing his wife, Jocelyne Lizotte, who had suffered from Alzheimer’s for more than a decade. Confined to a chronic care facility, Lizotte’s quality of life was gone. In February 2017, Cadotte took a pillow and suffocated his wife, then called the nursing station to inform the nurses of what he had done. He claimed that he felt compelled to put an end to his wife’s suffering.
While no one condones taking someone’s life in this manner, no matter the hardships, the Cadotte case raised sympathy for those family members called upon to be “natural caregivers” and the heavy burden they must carry. According to the Quebec Alzheimer’s Society, 145,000 people in Quebec are afflicted with the disease. This number is expected to nearly double by 2025. How to help these caregivers cope with the mental challenges and physical reality of burnout will be a major public policy issue in the future. The director-general of the society, Sylvie Grenier, testified during the Cadotte trial and observed that “services are lacking. They are not ready, nor is our society, to face the tsunami that is coming.”11
How do we improve the support given to individuals in a situation similar to the one faced by Michel Cadotte? How will we manage the growing number of families facing the grim reality that a family member is lost in the fog of dementia, or curled up in a fetal position in a long-term care facility? These are some of the concerns raised by the Cadotte case. Cadotte himself was convicted of manslaughter and sentenced to two years in prison.
During the Quebec election campaign in the fall of 2018, the CAQ pledged to hold public hearings on the question of broadening access to medically assisted dying. Clearly there will be no shortage of material to be considered. There will be the report from the group of experts chaired by Nicole Filion and Jocelyn Maclure. There will be the review that was conducted by the Commission sur les Soins de Fin de Vie of the requests for a medically assisted death that were turned down. The decision in the Gladu case that both federal and provincial laws are too restrictive and do not comply with the Carter decision must be looked at. And given the continued public and media interest in this debate, the stage is once again set for an important public policy discussion.
Conditions for Success
Given the sensitive nature of the debate, which touches the deepest chords of our humanity, there are several conditions that must be respected if this debate is to be constructive and as serene as possible. Having chaired the public consultations in 2010 and 2011, I will offer four suggestions:
- The debate must be nonpartisan. This is easier said than done, but the first set of hearings and drafting of a final report are proof that it is possible. It was a struggle: the fact that it took 51 working sessions of the select committee to prepare the final report reflects the complexity of the issues that the MNAs had to grapple with and the desire of all members to present a unanimous final report to their colleagues in the National Assembly. It must be remembered that this was a legislators’ initiative, not a government initiative. This nuance is important to ensure cooperation among parties and keep the debate away from partisan considerations.
- Space must be given both to experts in our society and to citizens at large. The select committee met first with experts to help shape the debate, identify the issues that must be considered and discuss the questions to be asked during the public consultations. This was an essential first step. But it is equally important to listen to the population. In our travels across Quebec, the committee members were impressed by the quality of the comments we received, and touched by the emotional nature of many of the testimonies. This included 114 people who took part in the “open mike” period at the end of each public session. Many of our fellow citizens have given the question of dying gracefully and in a dignified manner a great deal of thought. It is important to give them room to be heard again.
- Respect the opinions of others. While there are some polling data indicating that many Quebecers and Canadians are open to granting greater access to medically assisted dying, this view is far from being unanimous. Once again it will be important to listen to and respect those people who will express legitimate concerns about the protection of vulnerable individuals in our society. This will be a key element in the debate. Other individuals will come at this question from a faith-based perspective. Even in our newly proclaimed secular society, these views should be heard with respect.
- Finally, be prepared to allot a considerable amount of time to this debate. The first débat de société took more than four years, from the initial debate in the National Assembly in December 2009 to the final adoption of the bill in June 2014. Even in areas where a consensus is established, it is no easy task to translate popular sentiment into legislative wording. The long debates over defining end of life and terminally ill are proof of this. Defining these terms in a legal text was a big challenge. If we go beyond a system based on the informed consent of clear-minded adults, the challenges of definition will be even greater. Any modifications to the current regime will also require time and careful consideration. The recent ruling in the Gladu case includes the requirement that the Assembly redraft the legislation within six months. It will be impossible to address all of the concerns raised in such a short time. The government will either have to ask the court for more time, or else deal with the specific issue raised by the Gladu case separately from the wider debate over granting access to patients who are no longer able to give their consent but who have signed legal instructions to that effect beforehand.
The proposal to give access to medically assisted dying to individuals who are no longer able to give their consent will be controversial. Rereading the Carter decision, one is struck by the frequent references to “consent” and “competence.” Quoting the first trial judge in British Columbia, the Supreme Court echoed her conclusion that “there is a strong consensus that it would only be ethical with respect to voluntary adults who are competent, informed, grievously and irremediably ill, and where the assistance is ‘clearly consistent with the patient’s wishes and best interests, and in order to relieve suffering.’”12
How can we move forward from a system based on consent given on a repeated basis to medical professionals? How can we satisfy the point raised further on in the Carter decision that “the risks associated with physician-assisted death can be limited through a carefully designed and monitored system of safeguards”?13
The Court partially answered this question by drawing parallels to current practices regarding the withdrawal of lifesaving and life-sustaining treatments, and the granting of access to palliative sedation. In some cases, these decisions are based on advance directives or “DNR” wishes that are expressed through legal documents such as living wills and interpreted by family members and physicians. The Court noted that these practices also raise important questions about the protection of vulnerable patients, especially those who are no longer able to express their views or consent to a given procedure or decision affecting them. These risks are “already part and parcel of our medical system,” said the Court.14
Extending access to medically assisted dying will focus attention on the various forms of anticipated directives that allow individuals to give instructions about levels of care in situations where they can longer give consent. In 2016, the federal Minister of Health and Minister of Justice asked the Council of Canadian Academies (CCA) to examine three key areas of concern regarding medically assisted dying. Three panels were formed to look at assisted dying for mature minors, assisted dying where a mental disorder is the sole underlying medical condition, and advance requests for medically assisted dying.
The panel of the CCA charged with looking at advance requests recommended that these requests be contained in a document distinct from current documents that indicate patients’ advance wishes regarding treatment. The CCA panel proposed a series of safeguards on advance requests for medically assisted dying. These include access to palliative care education for individuals; well-defined criteria for these requests; time limits on the requests and the need for them to be renewed periodically; oversight mechanisms; and training, counselling and support for families of the patients. But the panel report is aware of the potential risks, and offers the following observation: “A judgment about whether to continue to prohibit or to permit some form of advance requests for medical assistance in dying would need to consider the inherent tensions among values respecting autonomy, alleviating suffering, and protecting against vulnerabilities, in light of risks and benefits to each scenario.”15
In short, designing these advance requests will take a great deal of thought. They would have to be as specific as possible about what end-of-life conditions would be intolerable. They would have to take the form of a legal document that should be renewed on occasion. And they should be fully discussed with doctors and family members before an individual loses his or her capacity to consent to an end-of-life procedure. This will be a tall order.
In 2010, the select committee examined the question of how to treat patients who were no longer able to give their consent when seeking a medically assisted death. I was struck by an exchange the committee had with two physicians with extensive experience in geriatric care Dr. Howard Bergman from McGill University and Dr. Marcel Arcand from the Université de Sherbrooke (coincidentally, both were brothers of sitting members of the Assembly at that time). Both of them offered a cautionary note to the committee. They outlined some of the difficulties they had encountered in the administration of advance directives. Often these directives caused divisions within families, as members differed in their appreciation of the patient’s intent at the moment that the living will was signed. Doctors themselves were often torn, and reluctant to stop treatments in certain cases.
If making decisions regarding the withdrawal of treatment is already complicated, the two witnesses warned that the use of advance directives or living wills regarding medically assisted dying would be even more difficult. Their advice to the committee was to provide access to medically assisted dying only to those patients able to give their consent, and exclude those who could no longer do so.16 Consulting physicians who work with Alzheimer’s patients will be an essential starting point for any new debate over medically assisted dying. Almost a decade later, I remain impressed by the points raised by these physicians regarding the importance of securing a patient’s consent.
As we have seen, the Gladu case will necessitate amendments to the current legislation. Judge Baudoin’s decision noted that the Quebec legislation was adopted before the Carter ruling, and was never revisited after the Supreme Court decision was rendered. In addition, no effort was made to review the Quebec legislation in light of the federal legislation adopted in 2016. The bills were similar but contained significant differences. Has the time come to try to harmonize the criteria? This would be another daunting challenge given the short period given to prepare new legislation.
The Debate Enters New Territory
Quebec society is once again poised to hold a debate that touches many central tenets of our humanity. We will have to take into consideration the pain and suffering that many people in our world face – family members, friends and neighbours. The care for patients with Alzheimer’s and other forms of dementia will come under greater scrutiny. The support given to their caregivers and family members must be increased. In a society with an aging population, these concerns can only grow in importance. They must be part of the debate over extending access to medically assisted dying, just as the importance of access to palliative care was a central concern when the select committee discussed end-of-life care. The importance of protecting the most vulnerable individuals in our society will also be in the spotlight.
Over the past five years, Quebec has developed a responsible system to govern medical assistance in dying. Patients, their families and physicians work together to examine requests before end-of-life procedures are initiated. But the foundation of the current system remains the clear and informed consent of a terminally ill adult patient.
Now the debate will enter new territory, where consent is no longer available. The use of advance requests, anticipated directives or living wills may provide a measure of guidance for those who will be charged with deciding for those who can no longer make these decisions themselves. Is it possible to put into place a system that protects the vulnerable, gives explicit guidelines to physicians and family members and addresses the suffering of people living with dementia? It will be necessary if we are to satisfy the Supreme Court’s conclusion in the Carter case noted above, that “the risks associated with physician-assisted death can be limited through a carefully designed and monitored system of safeguards.”
This will take time and a great deal of thought. But Quebec society, its citizens, and its politicians managed to conduct a debate marked by respect, civility and care for the fundamental dignity of all human beings. I am confident that the same spirit will animate the next chapter in this important débat de société.