On December 4, 2009, the Quebec National Assembly unanimously adopted a motion creating a special parliamentary committee to examine the question of dying with dignity. The four political parties represented in the Assembly at that time (the Quebec Liberal Party, the Parti Québécois, Action Démocratique du Québec and Québec Solidaire) approved a motion that would lead to extensive public consultations on end-of-life issues, including palliative care, living wills and, most contentiously, the difficult issue of euthanasia. The result was a rewarding experience for all concerned – parliamentarians, the media and the general public, as citizens and representatives of civil society came forward to comment on one of life’s most emotionally charged moments and to explore how death and dying are dealt with in our modern world.
From the outset, the goal was to reach out to the public. In the 20 years that preceded the committee’s work, the debate over euthanasia in Canada had focused either on the courts (as in the Sue Rodriguez and Robert Latimer cases) or on votes in the House of Commons to amend the Criminal Code of Canada. This time, the goal was to generate and allow as many people as possible to express an opinion on the matter.
The motion adopted in the Assembly was quite specific as to how the special committee was to proceed. The first step was to invite 32 experts drawn from medical, legal and ethical fields, along with various professional associations interested in the issue, to testify at the National Assembly in Quebec City. At this stage, the experts were asked for their advice on how to craft a consultation document, which questions needed to be answered, and how best to engage the population on these issues. The committee asked them to refrain from giving their personal opinion for the moment, as it was expected that they would return during the next stage of the committee’s deliberations to add their voices to the general consultation. The committee members were probably engaging in wishful thinking, as many of the experts clearly took sides in the euthanasia debate right from the start.
Of particular interest was the testimony of the Collège des Médecins (Quebec’s college of physicians), which had published a document on euthanasia in October 2009 and had concluded that several “grey zones” existed in end-of-life treatment and care.1 The Collège asked legislators to clarify issues associated with palliative sedation, living wills and a new concept known as “medically assisted dying.” The Collège’s position was reinforced by the two medical federations (general practitioners and specialists), which claimed that their members supported the idea of permitting euthanasia.2 Once the expert testimony had concluded, a 42-page consultation document was released in May 2010. It was hoped that the document would help define the various concepts in play (euthanasia versus assisted suicide, for example), provide specific case histories to illustrate the choices facing doctors, patients and society, and inspire citizens to participate in either public hearings or an online survey.3
The adventure was launched. Over the summer of 2010, the committee began to receive briefs from across the province. The initial motion had promised that the committee would travel across Quebec to hear witnesses. Eight cities were selected to host the hearings: Gatineau, Montreal, Quebec City, Saguenay, Sherbrooke, Saint-Jérôme and Trois-Rivières. Starting on September 7, 2010, in Montreal,4 a parliamentary odyssey began that included 29 days of public hearings, 273 briefs received, the testimony of 239 individuals and associations and the participation of 114 individuals in “open mike” sessions at the conclusion of each hearing. In addition, 6,558 people completed the online survey – a record number for a National Assembly survey. Finally, the work of the special committee received a great deal of media attention both in Quebec and from across Canada. This attention paid to a “citizens’ debate” helped stimulate interest in the issue at hand.
After the public hearings ended, several members of the committee travelled to France, Belgium and the Netherlands to meet with elected officials, doctors, lawyers and ethicists who had taken part in the debate on euthanasia in their respective countries. During the Quebec hearings, the positions of these countries had been depicted in contradictory ways, from a progressive paradise (Belgium, the Netherlands), where euthanasia is practised without restriction, to sinister lands where the vulnerable perish against their will.
The final chapter was the drafting of a final report, which was tabled on March 22, 2012, and contained 24 recommendations. The report was adopted, once again unanimously, after 51 working sessions of the committee.
One of the challenges of any parliamentary initiative that emanates from the legislative branch rather than the executive branch is to keep the momentum alive. In August 2012, shortly after the report of the special committee was tabled, Premier Jean Charest called an election, and Quebecers went to the polls. The PQ and the new Coalition Avenir Québec (CAQ) included pledges in their election platforms calling for legislation to enact the recommendations in the report, including the idea of medically assisted dying. The Quebec Liberal Party took no formal stand on this issue.
On September 4, 2012, the election produced a PQ minority government and an Assembly where 75 of the 125 members represented parties that had endorsed the committee report. The new Premier, Pauline Marois, named Véronique Hivon, the former vice-chair of the special committee, as the Minister responsible for Social Services. She was given the arduous task of drafting legislation to reflect the work of the committee.
On June 12, 2013, Bill 52, An Act Respecting End-of-Life Care, was tabled in the National Assembly. A further round of hearings on the text of the bill was organized in September 2013, and 55 groups and individuals commented on the legislation, which had three broad sections. First, it established a right for patients to have access to palliative care, and guidelines on how this care should be provided in Quebec. Second, the bill introduced the procedure to be followed by anyone seeking a medically assisted death. The steps to be taken to obtain clear consent from a terminally ill adult of sound mind were defined. Various oversight mechanisms and reporting obligations were set out. Finally, a formal status was granted to the “living wills” that many citizens have prepared to ensure that their final wishes will be respected, and instructions were provided as to how to include the contents of these documents in decisions regarding a patient’s treatment.5
In addition to a new government, the Assembly now included a new Leader of the Official Opposition, Quebec Liberal Leader Philippe Couillard. One of the first decisions he made as party leader was to indicate that members of his caucus would be free to vote according to their consciences. Votes of this nature are extremely rare in Quebec’s National Assembly, and Dr. Couillard’s decision added a new wrinkle to the proceedings. On October 29, 2013, Bill 52 was put to an initial vote on the principle of the legislation. The bill passed this hurdle, with 84 MNAs voting in favour and 26 voting against. Twenty-five Liberal MNAs voted against the principle, as did one CAQ MNA.
The bill was then referred to the Assembly’s Standing Committee on Health and Social Services, where clause-by-clause study took place. More than 50 amendments were made, including a series of important changes to the definitions of medically assisted dying, palliative care and continuous palliative sedation. The rights and responsibilities of doctors and other medical professionals were clarified, and specific reporting requirements regarding medically assisted deaths were added. The bill passed the committee stage, and returned to the Assembly for a final debate.
Once again, the vicissitudes of parliamentary life intervened. With election rumours in the air in early 2014, the time left for debate was limited. There was now a strong possibility that Bill 52 would die on the order paper – as in fact happened on March 5, when Premier Marois called an election for April 7 – and the parties’ parliamentary leaders blamed each other for the Assembly’s failure to adopt the bill. A debate that had been conducted to date on a nonpartisan basis was caught in the crossfire. However, the new Assembly can take up the bill if all the parties give their consent, and they have all gone on record as supporting a speedy return to the debate once the Assembly reconvenes.6
There were two broad areas of concern expressed before the committee. The first was the need to improve access to palliative care across the province. Palliative care doctors are passionate advocates for their cause. Eloquent cases were made for additional palliative care beds in hospitals, long-term care facilities and free-standing hospices, and for services to patients in their own homes. The debate was over to improve access to these services. No one questioned their relevance.
Palliative care advocates also wanted more training for physicians and other medical professionals regarding the benefits of palliative care. Too often, patients and their doctors put off the discussion about palliative care until too late. It should be part and parcel of the care afforded to a patient facing a terminal illness and not a form of surrender once all heroic treatments have been tried. One palliative care doctor went so far as to say that far too many cancer patients receive treatments that are ineffective, unnecessary and expensive. A more judicious use of treatments could save money, and these resources should be redirected toward the funding of palliative care.
The testimony of many families echoed these concerns. Stories of dying patients lying on stretchers in crowded emergency rooms or in rooms shared with other patients reinforced the need for appropriate spaces for patients to die with dignity.
Most palliative care groups spoke out against euthanasia. Their arguments were twofold. First, they believed that with modern pain management techniques, all or almost all patients could be comfortable in their final days. There is no need to suffer. If all patients had access to appropriate palliative care, there would be no need for a discussion about euthanasia. Second, certain groups feared that governments and the health care system would encourage euthanasia, thus reducing the need to invest more money in palliative care. The concern was that euthanasia would let governments off the hook when it came to investing the necessary dollars in palliative care.
Generally speaking, there was a broad consensus on the questions related to palliative care. But this consensus vanished once the debate shifted to the difficult question of euthanasia, or the Collège des Médecins’ concept of medically assisted dying. Here, the battle lines were drawn early, and there was little or no room for compromise.
For many witnesses, taking the life of another person was morally wrong at all times. This belief either was founded on religious motives or stemmed from a profound ethical concern that a decision to permit some form of euthanasia or assisted suicide7 would be the first step toward a dangerous erosion of the respect for the sanctity of life that, according to this school of thought, would have dramatic consequences for our society. These witnesses felt that the protection of the vulnerable, the elderly, the disabled and other oft-marginalized groups would be compromised, and that these first tentative steps would lead to a slippery slope where certain people would be reduced to mere burdens on society. From there, they argued, it was easy to envision a scenario where the argument could be made that these individuals should be disposed of for the overall benefit of society. Many of these witnesses were highly critical of the situation in the Netherlands and Belgium, and told of a dramatic decline in the respect for human dignity in these countries.
Certain people were worried about the apparent contradiction of a society which is attempting, on the one hand, to prevent suicide through the use of ad campaigns, support groups and psychological therapies while, on the other hand, encouraging a form of suicide for the terminally ill. Suicide prevention groups were concerned that the debate over ending the lives of the terminally ill would have a negative impact on their work with people struggling with suicidal tendencies.
The proponents of euthanasia or medically assisted death advanced several arguments. For many, the debate centred on individual choice, free will and the ability to control one’s own life. This group believed that patients who were facing declining quality of life, and were suffering or in acute psychological distress, should have the right to end their lives. This view of the matter was nothing less than an extension of individual liberty to end-of-life issues. Coupled with this argument was a critique of those who would impose their values or beliefs on others. “I will not choose for you, so please do not choose for me” was a common refrain.
Others asserted that palliative care could not successfully manage the pain of every patient. This is particularly true for individuals who have degenerative illnesses such as ALS (Lou Gehrig’s Disease), who often suffer at the end of their long ordeal. Palliative care cannot always alleviate their misery. Several of the witnesses were either people facing a grim destiny with one of these diseases or family members who had witnessed the sad, slow death of a loved one. Their testimony was often compelling.
In addition, there was discussion of the possibility for abuse. Would family members put undue pressure on an ailing parent to put an end to his or her ordeal? Would terminally ill patients feel as if they are a burden on their families, and put an end to their lives to avoid the guilt of “hanging on”? A fear was expressed that vulnerable and often elderly patients would be pressured into giving their consent to euthanasia.
Proponents of medically assisted dying pointed to the experience with the “right to refuse treatment,” which was granted as part of a major reform of the Civil Code in 1994. Many of the same concerns over undue family pressure, or a patient feeling that he or she is an encumbrance on society, could be made in the case of those who refused treatment. Often a refusal to receive treatment accelerates the death of the patient. For example, one family described the emotional moment when the decision was made, with informed consent, to unplug a woman from life support, and her subsequent demise. Yet, over the past 20 years, our system has managed, without controversy or evidence of abuse, the delicate issues associated with the right to refuse treatment. If this can be done to preserve the right to refuse treatment, why can we not enshrine the right to request a medically assisted death?
Many other issues were discussed during the long public consultations. Living wills, prior consent and refusal of treatment were all issues examined in great detail. The situation of patients in advanced stages of dementia was discussed. Could patients in this condition ever fully consent to putting an end to their lives? Recent proposals to extend the right to euthanasia to Alzheimer’s patients may reignite this debate. During the public consultations, doctors who treat dementia patients strongly advised against including their patients in any legislation, as no clear and informed consent could ever be obtained. So they were excluded from Bill 52, although Minister Hivon asked the Collège des Médecins to continue to reflect on this matter.
Finally, much attention was given to the constitutional aspects of this issue. Euthanasia is covered by the Criminal Code, and is therefore under federal jurisdiction. However, the Collège des Médecins’ argument is based on the belief that medically assisted death can be incorporated into a definition of a continuum of care, and the delivery of health care services falls under provincial jurisdiction.8 Furthermore, the Quebec Bar Association argued that the administration of justice falls under provincial jurisdiction. A provincial government can thus direct crown prosecutors not to lay charges if a certain protocol has been followed to obtain the consent of the patient.9
The preceding sections have attempted to give a flavour of the extensive public consultations that surrounded the debate on medically assisted dying, palliative care and other end-of-life issues in Quebec. As a member of the National Assembly who followed this debate closely, I found it an extraordinary event. It featured members of all political parties working together. It showed that our legislature can host a compelling “débat de société.” It provided a citizens’ forum for a debate that is often confined within the walls of our courthouses. Citizens responded generously, pouring out their views on this delicate and emotional topic from their hearts and their convictions. Civil society also responded generously, providing many serious arguments for legislators to consider. Finally, the media responded generously by giving extensive coverage to the debate. A book was even published, a thoughtful exchange of letters between two doctors, one for and one against euthanasia.10
On October 22, 2013, I spoke in the National Assembly, outlining the reasons for my vote in favour of Bill 52.11 First, I reiterated my support for the palliative care movement, recalling the deaths of both my parents at the West Island Palliative Care Residence. No one wants to face cancer and die, but the staff and volunteers at the residence provided great comfort and care to my parents. All terminally ill Quebecers should have access to care of this quality.
But palliative care cannot alleviate the suffering of each and every patient. Throughout this debate, my mind kept returning to the lucid testimony of Ghislain Leblond, a former Quebec deputy minister who now suffers from a lingering degenerative disease. He has become involved in the dying with dignity movement, and despite his extremely limited mobility he often participates in our public debate on the right to end one’s life. He was a frequent visitor to our committee hearings and followed our work closely online.
Mr. Leblond was one of the first witnesses to testify before the committee, and he challenged the legislators by simply outlining the expected course of his illness and expressing his desire to put an end to his suffering when it became intolerable. Throughout the hundreds of hours of testimony and debate, I kept listening for an argument or a set of principles I could use to deny Mr. Leblond his request. I did not find one. He is of sound mind, his illness will enter a terminal phase one day, and he has repeatedly given his consent. I believe he is a candidate for a medically assisted death.
At the same time, I expressed my opposition to the extension of this debate to those who are unable to give their full and informed consent. I agree with the warnings given by the specialists who treat dementia patients that no consent can be provided by individuals with this debilitating condition. However dreadful their ordeal may be, we cannot know their intentions on this crucial question.
It was the first time in my 20-year parliamentary career that I cast a vote according to my conscience. I felt more than usually responsible for my vote, because I have received many letters and calls from constituents whose views differ from mine. I respect their views, and hope that they will respect mine.
1 Collège des médecins du Québec, October 16, 2009, p. 11, footnote 1.
2 These polling results were often challenged by doctors who later testified before the special committee. The challenges centred on the way the survey was conducted and the number of responses received. The federations stood behind their conclusions.
3 The survey was hosted on the National Assembly website, www.assnat.qc.ca
4 To add to the importance of the proceedings, committee members were saddened to learn that our colleague Claude Béchard, a 41-year old member of Jean Charest’s cabinet, had died of cancer that morning in Quebec City. Our professional interest in the end-of-life debate quickly became personal.
5 It is important to note that a living will cannot cover situations regarding medically assisted dying, which can only be obtained by the consent mechanism found in Bill 52.
6 It is difficult for me, as a sitting member of the Assembly, to comment on the dispute that occurred at the end of the parliamentary session in February. I will honour the nonpartisan nature of the discussions and limit myself to what I have written in these pages.
7 The distinction between euthanasia and assisted suicide concerns the presence of a doctor or medical professional at the time of death. Euthanasia, as defined by the special committee and others, involves the active participation of a doctor in the end-of-life care of his or her patient. Assisted suicide, as permitted in four American states, implies that a doctor would prescribe a lethal drug cocktail that the patient would then take. No medical professional is present during this process.
8 Collège des médecins du Québec, September 17, 2013.
9 This is a far too brief summary of a lengthy line of argument developed by the Quebec Bar Association. For more information on this point, readers should consult the 184-page brief which the Bar tabled before the special committee (Barreau du Québec, September 2010) and the 450-page analysis conducted by the provincial Ministry of Justice (Me Jean-Pierre Ménard et al., January 2013).
10 Marcel Boisvert and Serge Daneault, Être ou ne plus être: Débat sur l’euthanasie (Montreal: Éditions Voix Parallèles, 2010).
11 The text of my speech to the Assembly on Bill 52 is available online here.