Thank you, Mr. Chair and members of the committee, for allowing me to appear before you today.
As the chair indicated, I was the lead counsel in Carter. In that context, I think I probably know better than anybody what this case is about and what it stands for, because I was involved in framing the case. Framing the case means what we decided it was going to be all about, how we pled the case, how the government responded to our pleadings, the evidence presented in the case, the arguments in the case, and the findings in the case.
I can tell you, based on all of that, which I'll elaborate on in the time permitted, that the definition of “grievous and irremediable” in Bill is clearly inconsistent with the Carter decision, and that in my view, an unquestionable view, it is clearly unconstitutional; and that if the bill is enacted, it will be struck down.
I tell you this not only because of my involvement as lead counsel in Carter. I've been litigating the charter since its very inception—that was 34 years ago—and I probably have more experience litigating the charter than any lawyer in private practice in Canada does, and I've had some notable successes. So when I say that in my view this bill, if the definition of “grievous and irremediable” is left in, is unconstitutional, I say it actually with great confidence.
There are really two issues I want to address in the time I have. One is whether there is anything in the Carter decision that would allow Parliament to enact this bill, insofar as it includes the “reasonably foreseeable” phrase, the meaning of which you all know, as well as the phrase dealing with an “advanced state of irreversible decline”, and, for that matter, “incurable”. I say there is nothing in the Carter decision that allows for these. In fact, there's much in the Carter decision that is inconsistent with these words.
I've handed out a fairly lengthy brief in which I walk through many of these more technical issues, and I'm not going to repeat it in the time I have. I asked the clerk, however, to hand out something to you just now, which I only discovered after I wrote the brief. It is a transcript from the Supreme Court of Canada hearing just last January, when the federal government was asking for an extension of six months in order to allow Parliament more time to enact the law.
You should have it; it's the Supreme Court of Canada case, Lee Carter v. Attorney General of Canada. It is an excerpt of an exchange between Justice Karakatsanis and Rob Frater, the federal government's lawyer, and also Justice Moldaver.
This is very telling, I think. If you go to bottom of page 18, at line 19, Justice Karakatsanis says,
Mr. Frater, can I ask you this: Does your position on the Québec legislation mean that you accept that it complies with Carter? I'm thinking particularly about somebody has to be a la fin de vie whereas in Carter we rejected terminally ill.
That can't be any clearer. The Supreme Court of Canada, in Carter, rejected any requirement that a person be terminally ill. If you go on, there's an exchange between Justice Moldaver and Mr. Frater in which he says that the Quebec legislation is “under-inclusive”. By that he meant that it didn't go as far as Carter required, and this obviously raises serious questions about the constitutionality of the Quebec legislation.
I can tell you the way we pled the case. It was my co-counsel and I who chose the words “grievous and irremediable”; those were our words. We deliberately left out “incurable”, because “incurable” doesn't capture the necessary requirement. We used “grievous and irremediable.”
The government asked what we meant by that. As you see in our brief, we spelled out what we meant by that, and it didn't include “terminal”. Then, in argument before the trial judge, the government lawyer said—and again, this is set out in the brief—that the problem with the plaintiff's definition of “grievous and irremediable” is that it doesn't include “terminal.” The trial judge may have used the word “terminal” a hundred times in her reasons, by reference to other regimes, etc., but she didn't require that a person be terminal in order to avail themselves of physician-assisted dying.
As I said, the Supreme Court of Canada, in its ruling, in its declaration as to who was entitled to physician-assisted dying, didn't limit it to “terminal”. You may say that “reasonably foreseeable” is different from terminal. Well, it's not different from terminal; it's just that there are different ways of defining terminal. Some people define terminal in an arbitrary way as six months from the end of life”. Other people define it in a vague way, such as “at the end of life”, as in the Quebec legislation.
This bill defines it in a similar way, but it's all to the same effect. It's imposing “terminal”, and that's simply contrary to Carter. The reason it's unconstitutional is that by defining those entitled to physician-assisted dying—I guess it's supposed to be called “MAID” today, medical aid in dying, and that's fine—Parliament has excluded an entire group of individuals who otherwise would enjoy the charter rights that the Supreme Court of Canada gave in Carter, and that group is the physically disabled, whose death is not reasonably foreseeable.
In the few minutes I have left, I want to tell you—and I've set this out in my brief in some detail—that as a physically disabled man, I was very sensitive and alive to the arguments made by the disabled rights organizations, organizations whose cause I ordinarily support, but on this point I thought they were just fundamentally wrong, insofar as they suggested that all physically disabled people are not really disabled. You're going to hear from Ms. Pothier and Mr. Baker. If they don't use the term “the social model of disability”, I can tell you that their entire premise before the trial court and the Supreme Court of Canada is that we're not really disabled; we're just impaired, and that society disables us because we live in a city where there are stairs to the buildings or in which ableist society has its own notion of what a dignified life is.
I accept that there's no one conception of a dignified life, but I reject the idea that people with serious medical illnesses or conditions, whatever the cause, are capable of suffering intolerably and capable of saying that this is not a dignified life, even if most disabled people conquer their disabilities and accept that what they have to do to get through the day is not undignified. The premise of Bill , insofar as it has this reasonable foreseeability clause, is that most disabled people, all whose death is not foreseeable, are somehow incapable of making an informed decision about whether or not to seek assistance in death.
I've already read—and you will hear again—that the reason for this, they say, is that the disability could be transitional, situational, or transitory, and if you let a disabled person choose death, they might regret it later. You have to try to get your head around that. The trial judge heard all those arguments and rejected them. The idea that a disability may be transitional, transitory, or situational is something that the disabled groups put to the Supreme Court of Canada. The Supreme Court of Canada rejected that, yet this bill essentially provides that all disabled people are simply taken out of the protection of rights that the Supreme Court of Canada gave them in Carter. Parliament can't do that.
Parliament can't do that by claiming that it's a section 1 justification. Section 1 was fully argued in the Carter case. Carter created a floor of constitutional rights and entitlement, not a ceiling. Parliament can provide further rights and entitlements, and the courts can provide further rights and entitlements, but Parliament can't take away any of the rights and entitlements that the Supreme Court of Canada gave to the disabled. Bill actually carves right out of the Carter decision the rights given to the physically disabled, and it can't do that.
I see that my time is up. I'm obviously open to questions.
Thank you very much. I appreciate the opportunity to be here with honourable members on this matter that is very important to our country as well as here in Ottawa.
I filed my submission, and the three areas I addressed are the sanctity of life, palliative care, and freedom of conscience. I hope you've had a chance to read it; it's limited by your limitation of 750 words.
I want to say first of all that I think it is important to acknowledge two things. One is that I'm here as an aboriginal person. My tribe is Wolastoqiyik from New Brunswick. Maliseet is what the English call us; in French they call us Malécite. In my teachings—from my elders, of course—life is respected in all of its stages. I mention this in my brief. Also I'm here as a Catholic. A principle of our Catholic faith as well is that life is respected in all its stages.
Since I was coming here, a friend of mine gave me a copy of legislation entitled an act to establish Pope John Paul II Day, which was enacted by Parliament and assented to on December 16, 2014, in which Parliament acknowledged the important role that Saint John Paul II played not only in this country but in the world as well.
I want to refer in particular to his “Prayer for Life”. If you don't mind, I'm going to hold on to my eagle feather, Mr. Chairman.
O Mary, bright dawn of the new world,
Mother of the living, to you do we entrust
the cause of life: Look down, O Mother,
upon the vast numbers of babies not
allowed to be born, of the poor whose
lives are made difficult, of men and
women who are victims of brutal
violence, of the elderly and the sick killed
by indifference or out of misguided mercy.
Grant that all who believe in your Son
may proclaim the Gospel of Life with
honesty and love to the people of our
time. Obtain for them the grace to accept
that Gospel as a gift ever new, the joy of
celebrating it with gratitude throughout
their lives and the courage to bear witness
to it resolutely, in order to build, together
with all people of good will, the civilization
of truth and love, to the praise and glory of God,
the Creator and lover of life.
That was on March 25, 1995.
With respect to the issue of palliative care, when two ministers announced Bill , the Minister of Health indicated that there would be some money invested in palliative care. I'll refer honourable members to a study that was done, the report from which was called “Not to be Forgotten: Care of Vulnerable Canadians”. It was done by a parliamentary committee here in 2011. It's an extensive report, a comprehensive report, but I would recommend that at least your researchers look at it, because there's a very strong statement in it about looking at palliative care and making sure that governments uphold this portion. It requires simply an amendment of the Canada Health Act for it to happen. Many people are placed in hospices and other centres and literally wait for their time to die. I know many people, my friends and relatives and family, who have been in that situation. It's important that the government make life as comfortable as possible for these people in the last days of their lives.
The other area I will concentrate on is freedom of conscience. Of course we know it's a fundamental right within our charter.
I remember when this was being debated in 1980. Mind you, I was on the other side; I was advocating for indigenous and aboriginal rights back then throughout our country, making sure that the document would in fact protect our people.
One of the writers of the Universal Declaration of Human Rights was an individual from New Brunswick, Professor Humphrey. Article 18 of that document says that “Everyone has the right to freedom of thought, conscience and religion”. This same phrase, of course, is also repeated in the International Covenant on Civil and Political Rights, again in article 18.
Canada not only acknowledged the existence of these particular declarations, but Canada as a country also signed what's called the optional protocol, which allows a citizen of this particular country to question the decision-making power of Parliament and whether it is in fact fulfilling the obligations under international instruments.
My cousin Sandra Lovelace of course was the first one who took the optional protocol to the United Nations, and she's a senator now. It was about dealing with her identity as an indigenous woman who had lost her rights through marriage to a non-native. Ultimately, Canada was sanctioned by the United Nations, and Canada changed the law in 1985.
I put that on record maybe because as I look at this legislation, I'm not sure if the advisers at the Department of Justice examined this legislation in terms of conscience rights—because there's an absence there—so does it in fact comply with international law? Does it comply with the instruments at the United Nations level? Of course, the Department of Justice has all kinds of experts. I just raise that with the committee, Mr. Chairman, because I think it's something that shouldn't be overlooked. I remember how in the 1980s, when legislation was passed and they would sometimes say, “Okay, hold your nose and let it pass, even if you don't agree with it.”
Conscience is so important and so critical. If you force somebody to do something against their will and they have firm beliefs, what's going to happen to the medical profession? What's going to happen to those institutions that exist and do not wish to participate in this particular arrangement that's going to be enacted by Parliament? Almost everybody is saying that it's inevitable that it's going to pass, but there has to be a reason, and I think parliamentarians should realize that this thing has to be studied. Although they say they'll study it five years from now, you can't wait five years. Circumstances change.
That is what I wanted to put on the record, Mr. Chairman and honourable members, because I understand that all three parties are represented here. I want to thank you very much for allowing me to come here.
I asked to be here because from May 31, 1991, when I was appointed as a provincial court judge, to October of 2014, when I finished my term as lieutenant-governor of the province of New Brunswick, I was in a virtual sphere of silence. As a judge, you can't make comments on public issues, and definitely as a representative of Her Majesty you're not allowed to, so finally, then, I was relieved of this particular burden in October of 2014. I come here today saying that there should be great compassion for people who are ill, suffering, or facing death, but we all should also make their lives comfortable in those last stages.
Thank you very much, Mr. Chairman and members of the committee, for listening to me. I want to wish you well, but I also want to let you know one thing. In my term as lieutenant-governor, I visited schools in New Brunswick. There are certain schools, believe it or not, that pray for parliamentarians and pray for judges every day, because it's part of their school regime. I was impressed. I didn't realize they were doing that.
Even today, as you're meeting here and as you continue your debate, you have people in certain schools in the province of New Brunswick who are praying for you, and prayer is powerful. We need prayer; we need a higher power, and we need a higher authority in order to make just decisions.
Looking at your briefing document, I thought I should spend at least one minute telling you who I am, because you probably don't know me.
Between 2009 and 2011, I chaired an international expert panel that was tasked by the Royal Society of Canada with drafting what they hoped at the time would be a landmark national report on end-of-life decision-making in our country. We recommended at the time that medical aid in dying be decriminalized for decisionally competent people.
We further recommended that terminal illness—and this I think is the thing I want to talk about most today—not be made a threshold condition for a person to be eligible for medical aid in dying, for two reasons. One reason was flagged already and it is correct: there's no precise science to providing a prognosis of terminal illness in terms of a specific length of time. Second, if the term ”terminal illness” is made a necessary condition of the statute, by necessity it would be under-inclusive; there can be no doubt about it.
The Supreme Court justice in Carter v. Canada concurred on the subject matter. The justice department tried to justify the limitation that it seeks in the draft legislation, to be for persons with foreseeable natural death, and it says basically that the justice has stated in paragraphs 1 to 7 in Carter that they were responding to the factual circumstances before the court.
What the department fails to mention is that immediately preceding that statement, the court clearly stated that the impugned sections of the Criminal Code are void insofar as they prohibit physician-assisted death for a competent adult who clearly consents to the termination of life and has a grievous and irremediable medical condition.
The thing is this. The statement about the circumstances must be read in light of the criteria that were laid down. The court applied its criteria to the factual circumstances and not the other way around. Its clarification cannot be read to justify the inclusion of terminal illness, then, as a threshold condition for access to “MAID”, to medical aid in dying.
As it is proposed now, throwing everyone other than those near foreseeable death in a catch-all category of “vulnerable” inevitably will result in the very excessive breadth and gross disproportionality that the Supreme Court identified when it struck down the current Criminal Code provisions.
It seems to me the justice department is quite cognizant of the fact that its proposed legislation is too restrictive. Yet it fails to provide a sound rationale for its terminal illness threshold, because when you think about it, respect for human life surely is not undermined when we accede to a competent person's request for medical aid in dying who suffers from an intractable clinical condition that renders their life not worth living to them.
Denying such patients' requests for medical aid in dying serves no desirable objectives and it certainly does nothing to protect the vulnerable. If anything it condemns these very same vulnerable people to continue in suffering and arguably to haphazardly undertake suicide attempts. I could give you plenty of examples if you were to ask me about individual situations that I'm very well aware of in which exactly that happened. It's not just a theoretical exercise here.
Last year, in the Journal of Medical Ethics, I published an article jointly with a clinical professor at Erasmus University medical school, Suzanne van de Vathorst, I argued that competent patients who suffer, for instance, from intractable depression, should be eligible for medical aid in dying. While I can't go into the details of that paper today, I want to tell you that fundamentally it's based on the recognition that some intractable psychiatric illnesses are known to cause severe suffering that is just as painful as the most painful physical ailments, and that existing treatment modalities fail a significant number of these patients. We're looking at about 30% of people with clinical depression. The depressed patients are not per se incompetent, and their evaluation of their quality of life is often actually very realistic.
There's nothing in the Charter of Rights and Freedoms that suggests that if we label such people as mentally ill or vulnerable we are justified in removing their agency in questions of life and death, because this is what is proposed in the current draft legislation.
A lot has been said, and you have heard some of this from various expert witness statements with regard to this category of patients. Dark warnings were sounded about supposed dangers involving our most vulnerable. The substance of these expert witness accounts was rejected unanimously by the justices of the Supreme Court. In fact, you will hear right after us from Harvey Chochinov, whose expert witness account was completely rejected by the Supreme Court. It was also rejected by the expert panel advising the provinces and territories on this subject matter as well as the joint special parliamentary committee.
The justice department in its misrepresentations of the current legal and policy situation in Belgium, for instance, relies on its legislative background document, not at all on peer-reviewed, large-scale research studies, but on a handful of cases—think about it—that make the rounds on the Internet. That's the level of expertise that we have gotten with this background document.
The Supreme Court has in fact rejected this anecdote-based approach to this issue. I quote from the judgment:
The resolution of the issue before us falls to be resolved not by competing anecdotes, but by the evidence.
The fact of the matter is this. Any major piece of peer-reviewed research on this subject matter has come to the same conclusion: medical aid in dying does not constitute a threat to vulnerable people. The existing evidence base also puts to rest arguments suggesting that we first need to study what the implications of a regime that meets the court's criteria would likely be. The reason for this is that all the available scientific evidence on any of the jurisdictions that have decriminalized assisted dying does not support abuse-related concerns made even by some disability rights activists, as we have pointed out earlier.
I want to talk quickly about this a bit, because you have heard a lot about it. I want to give you some data about both Belgium and the Netherlands, because these are the two straw men that are being used in this context.
Today, neuropsychiatric cases involve about 4% of all medical aid in dying cases in Belgium. That translates into about 70 cases out of more than 1,800 euthanasia cases. The vast majority of requests from such patients are rejected, arguably out of an abundance of caution. It's true that the overall percentage of such cases has slowly increased over the last few years, but it appears to have plateaued at its current levels. Typically, these cases are actually handled by specialized teams of clinicians.
The same is true for the Netherlands. In 2013 they had 42 psychiatric patients; in 2014, 41 patients; and in 2015, 56 patients. There is no sudden deluge of euthanasia cases involving psychiatric patients. Depression is mentioned in about half of these cases. The backgrounder that you got from the justice department tells you about a letter that 65 psychiatrists and psychologists wrote to the local newspaper or a newspaper in that country, no kidding.
The Dutch psychiatric association, the actual professional association in the country, represents about 3,600 psychiatrists. They have drafted specific guidelines for these kinds of cases, requiring that each patient be seen by two psychiatrists and another physician. That ensures that they're competent and that no treatment options have been overlooked. That's the reality in that country.
I think these figures illustrate that there's a fairly small number of psychiatric patients receiving medical aid in dying, but it is patients such as these that the current legislative draft would condemn to continuing needless suffering, and this is why it's so important that this draft legislation be amended.
The ongoing public debate about eligibility criteria features phrases such as “reasonable compromise” and “a cautious approach”, using some of the same rhetoric that was deployed by the justice department, and I think this misses something rather basic. The rather basic thing is this: the Supreme Court actually has stipulated clear minimum criteria that the new legislation must meet. These criteria would have been developed with a view to reasonable limits in section 1 of the charter. The proposed draft legislation, for the reasons mentioned, does not actually meet those criteria.
I urge you, then, to amend the existing draft legislation as outlined in my witness statement, keeping in mind that the Supreme Court's minimum standard is this: the request for medical aid in dying must be made by a competent adult; the condition must be intractable; and life must be considered to be not worth living by the patient. There's nothing else to it beyond that.
Let me quickly in the last minute talk about both advance directives and mature minors. Today, we allow patients to make advance decisions about what types of care they will accept when they are no longer capable. Such advance decisions may even have the effect of hastening death, for instance. These kinds of advance directives are generally respected.
It is fair to say that the Supreme Court arguably does not require government today to admit advance directives in the context of medical aid in dying or to include mature minors among those eligible for medical aid in dying. It is my considered view, though, that both are desirable and logical extensions of the rationale driving the judgment. I recommend therefore—and you have this also in my witness statement—that these subject matters be studied during the next 18 to 24 months and that this be a statutorily mandated process codified in the act.
Thank you for your time.
My memory goes back to the original charter that was being drafted in the 1980s, and the discussions that would have occurred then; and the notwithstanding clause was put in there for a purpose. I remember specifically why it was put in there: in order to make sure that this would in fact pass not only Parliament, but that it would get 70% of the vote of the provinces across this country.
I'm sure at the time the government would have consulted with individuals as to the effect of the notwithstanding clause. Of course, we know that has been invoked a few times in our country within the jurisdiction of various legislatures. Now we're saying that it's been spent.
I was disappointed that neither the previous government nor the current government explored publicly the notwithstanding clause. That option is off the table, as far as I'm concerned, according to what the current government is saying as well.
The law is the law. The Supreme Court has made its decision, but the judges also know that the ultimate judge is Parliament. Parliament is the one that enacts legislation, and if one of our fundamental rights is freedom of conscience, then I think Parliament has to protect that right as well so that it's not left to a particular province to ask whether these agencies can then force medical people to do this. Mr. Arvay has indicated that the chief justice said not to force.
I think the weakness of this current legislation is that there's nothing in there that respects that fundamental right, and if it's not in there under criminal law, it will be brought up as a defence, and it will be litigated from provincial court all the way to the Supreme Court of Canada, which will probably involve a five-to-seven-year span, and there will be a lot of litigation on this as well.
I don't see why Parliament cannot insert freedom of conscience in that bill for those who don't want to participate, including institutions. For example, the hospice that's been created in Fredericton and the hospice in Saint John have both said there's no way they're going to comply with this law if they're forced to participate in it.
Thank you for your question.
My claim is based on how, over many years, ever since these jurisdictions started decriminalizing this, they have basically looked at all the individual cases that were ever reported in those countries and tried to find out what categories of patients were asking for this.
When we talk about vulnerable people, who typically would come to mind? We would think that it might be people who might have trouble accessing health care, for instance, or people who have trouble accessing palliative care because they can't afford it. There are any number of reasons. The reality is that in virtually of these jurisdictions, the vast majority of patients asking for medical aid in dying are in fact late-stage cancer patients. While there is a bit of a fluctuation, these figures are fairly stable. It's the overwhelming majority.
For instance, if there were a serious danger to people with mental illnesses who received medical aid in dying, you would expect that after this having occurred for many years, the numbers would explode at some point. If you are concerned about the abuse claim, you would see that in one year year there were maybe 10 people, then there were 20 people, and then suddenly there were hundreds and thousands, and this is how they get rid of people with mental illnesses. This of course is not what's happening. What is actually happening is that in all of these jurisdictions, including the Netherlands and Belgium, the overwhelming majority of these kinds of patients asking for medical aid in dying actually have their requests rejected. To me, that's a really strong indication that protections are in place precisely for these kinds of vulnerable patients, and I'm glad they exist.
Do not get me wrong. I appreciate completely your concern. I'm just saying that when you look at the evidence, beyond anecdotes there is nothing to support these claims, and yes, I'll stick to that.
First of all, it's interesting that although the trial judge in the Carter case used language that was somewhat similar to “an advanced state of irreversible decline”, she used the language to say that the person had to be in an advanced state of weakening capacities. We didn't argue that. She came up with that on her own. Interestingly, though, the Supreme Court of Canada did not adopt the trial judge's position on that one point; they essentially adopted the trial judge's position on everything except that one point. I see the clause's words “advanced state of irreversible decline in capability” as very similar to what I think the trial judge was getting at.
One problem I have with that clause is that I really don't know what it means. If it requires some sort of progression of “worseness”—I'm not sure whether that's a proper phrase—then I reject it.
One reason we argued against “terminal” is that we had in mind, most notably, a person by the name of Tony Nicklinson, whom you around this table have probably heard about, the man who had locked-in syndrome. He was struck down by a massive stroke when he was 50 years old. He couldn't move one muscle in his body, other than his eyelids—or, I believe, his eyeballs—and yet he was going to be in that condition for at least 20 years. We thought, it's one thing to suggest that someone might be able to tough out the suffering for a few months when death is imminent, but to suggest that someone has to tough it out for 20 years is just inhumane; it's just cruel; it's a form of torture.
When Tony Nicklinson was struck down by this stroke and had developed something called locked-in syndrome, was he already in an advanced state of irreversible decline in capability? Maybe he was, if all that means is that you're symptomatic rather than having something you worry about, but if it requires some sort of progression, a getting worse, well, he wasn't going to get any worse.
So I have a problem with that clause. It raises more questions than it answers. The whole purpose of this legislation, as I heard when the federal government appeared at the Supreme Court of Canada to request an extension, is provide clarity for the medical profession. The medical profession might be chilled by just the Carter decision alone. This, then, was designed to provide clarity. Well, this just adds uncertainty; it doesn't provide any clarity.
Honourable members of Parliament, my name is Harvey Max Chochinov. I hold the academic rank of distinguished professor of psychiatry at the University of Manitoba. I direct the Manitoba Palliative Care Research Unit, and I hold the only Canada research chair in palliative care. I've spent the entirety of my career working and conducting research in palliative end-of-life care. I'm also the former chair of the external panel on options for a legislative response to Carter v. Canada.
It is my privilege today to share some thoughts on Bill focusing on possible amendments for your consideration. My submission, which you've received, outlines these in more detail and also includes my rationale for why the current limitations described in the bill, including limiting access to patients whose death is reasonably foreseeable and not including provisions for mental illness, advance directives, and minors, are eminently justifiable and prudent.
The amendments I've put before you for your consideration include the following.
Number one, the government should consider an amendment stipulating that medically hastened death will take the form of assisted suicide, so long as patients are able to take lethal medication on their own. Euthanasia would be reserved for instances in which patients are no longer able to ingest lethal medication independently.
International experience reveals that euthanasia and assisted suicide are vastly different in terms of their uptake and lethality. In the jurisdictions that offer only physician-assisted suicide, the latter accounts for about 0.3% of all deaths. In jurisdictions that offer euthanasia, that form of death accounts for 3% to 4% of all deaths.
Extrapolating these figures to Canada and anticipating approximately 260,000 deaths per year, a regime offering physician-assisted suicide exclusively would expect about 800 to 1,000 of these deaths annually. On the other hand, a regime dominated by euthanasia could expect between 8,000 and 10,000 of these deaths annually.
According to experts appearing before the external panel, this vast difference is largely accounted for by ambivalence. Ambivalence is an important dynamic in considering a hastened death. While assisted suicide offers the possibility of changing one's mind—30% to 40% of patients in Oregon who receive a prescription never in fact use it—euthanasia dramatically reduces that possibility, once it has been scheduled and expectations are set for a specific time and place.
The data is clear. This will ensure that thousands of people each year who are ambivalent about an assisted death will not feel pressured by circumstances to proceed before they are ready to die.
Number two, the government should consider an amendment requiring that all patients obtaining medically hastened death should first be provided with a palliative care consultation. This would be over and above the duties of the two physicians described in the current bill and would be critical, so long as the bill limits access to patients whose natural death is reasonably foreseeable and who are in an advanced stage of irreversible decline in capacities.
The palliative consultants would not be in a decision-making role; rather, their role would be to identify all physical, psychosocial, existential, and spiritual sources of distress underlying the request to die; to ensure that patients are fully informed of all options that could be initiated on their behalf; and finally, to document their findings so that prospectively collected, anonymized information could be entered into a national database providing a detailed and objective basis for Parliament's five-year review of Bill .
Number three, the government should consider an amendment requiring judicial oversight and approval for all medically hastened deaths. Judicial oversight would ensure a precedent-based, consistent, and clearly articulated set of benchmarks regarding when eligibility criteria have been met.
Judicial oversight would insulate health care institutions and professions from any perceived or real hazards associated with medically hastened death and would likely increase access, given the increase in number of health care professionals who would be prepared to engage with patients requesting medically hastened death. Oversight would demonstrate profound leadership, indicating that while Canada has made medically hastened death legal, our government does not yet know how this fits into our current system of health care.
Number four, in the most profound way possible, judicial oversight would ensure a commitment to transparency and objective evaluation of all factors, be they medical, emotional, psychosocial, financial, or environmental, that might underpin a request for medically hastened death.
In conclusion, I believe that the limitations and safeguards currently included in Bill , together with these suggested amendments, would see Canada's approach to medically hastened death marked by integrity, transparency, and wisdom. Thank you.
I'm pleased to be here today. I just want to say that although I'm not addressing all of our concerns today, the B.C. Civil Liberties Association continues to stand by our previous submissions to the parliamentary committee that went before.
Today my focus is simply on making the bill Carter-compliant. Bill , in our view, must be amended in order to ensure compliance with the Carter decision and with the Charter of Rights and Freedoms. I have to say we were shocked when we first saw this bill and we learned that not only did it ignore many of the core recommendations of the parliamentary committee, but it actually cut out part of the heart of the victory that our organization had won in Carter.
In our view, this bill forgets what the Carter case was about. This case wasn't just about helping people with terminal illnesses to have a dignified death of their choosing; it was equally about ensuring that people who are trapped in unimaginable suffering from non-terminal illnesses have the right to escape a lifetime of indefinite suffering. Both of these kinds of people were before the court, and importantly, our organization was granted public interest standing to argue this case as an institution, in respect of various kinds of patients. The ruling was not limited to terminal cases, as we know from the mouth of the Supreme Court itself in January. It did not limit the decision to terminal people or to people who were foreseen to die.
The government says, well, this restriction isn't a restriction to those who are terminal. We say that the effect is the same, that under this bill, someone needs to be dying in order to qualify. The court itself has said that this is wrong.
We won that victory after years of gathering evidence, of tireless work, of fighting a federal government that opposed the realization of this right tooth and nail. We systematically were able to beat each of those arguments that were mustered by the government over multiple years. We knew, in winning, that this would make a real difference for people who would otherwise suffer intolerable and terrible deaths. We knew it would make a difference for people who were suffering unimaginably from grievous and irremediable illnesses in life, and now we see this victory being hollowed out, being taken right out of the bill for half of those people.
In order to remedy this, we support the amendment that was referred to by Professor Downie in her remarks yesterday. We take the position that prohibiting patients whose deaths are not reasonably foreseeable from having the choice of medical assistance in dying violates the charter, and that the entire section referring to the definition of “grievous and irremediable” in the bill should be eliminated. In its place, we believe that proposed paragraph 241.2(1)(c) should be amended to state that a person must have a grievous and irremediable medical condition, including an illness, disease, or disability, that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition. This, we believe, will bring the criteria in line with Carter.
If Bill is not amended to eliminate the requirement that a condition be “incurable” rather than “irremediable”, the requirement that there be an advanced state of irreversible decline, and the requirement that natural death be reasonably foreseeable, the result will be terrible suffering for those Canadians who are barred from accessing medical assistance in dying—and that's what this is about. It's not an academic exercise, or even an exercise, as is often done in this place, quite appropriately, in balancing political interests. It is about the intolerable and unimaginable suffering of real Canadians, and about their rights.
The “reasonably foreseeable” requirement is terribly vague. You've already heard from numerous witnesses who have said so, including The College of Family Physicians of Canada, representing the doctors who are most likely to be dealing with these issues. We believe this requirement, in particular, of reasonably foreseeable natural death, is unconstitutional because it violates the charter right to liberty. It deprives a patient of fundamental choice related to their body. The court concluded that the Criminal Code in its original form, through its blanket prohibition on the right to request a physician's assistance in dying, interfered with liberty by restricting the ability of qualifying patients to make decisions concerning their bodily integrity and their medical care.
It interferes with the charter right to security of the person because it causes a patient to continue to endure suffering, and it interferes with the charter right to life. Since individuals are deprived of the choice of an assisted death, there are some individuals who may take their own lives prematurely in order to avoid intolerable suffering, while they are still physically able to do so.
Now, the government suggests that restricting access to assistance in dying to people whose deaths are “reasonably foreseeable” is justified because it will protect the vulnerable. We've heard already from Mr. Arvay that this argument was used by Canada at court, and the court's decision was clear: Parliament cannot rely on a blanket exclusion of a whole class of people to protect the vulnerable when other less-interfering means are available to do the same thing, for example, to assess decisional capacity on an individual basis. Canada even conceded at the trial, in Carter, and I'm quoting from the Supreme Court reasons:
“It is recognised that not every person who wishes to commit suicide is vulnerable, and that there may be people with disabilities who have a considered, rational and persistent wish to end their own lives”.
There's a really easy way to understand this, and it's that these arguments were made already. As has been described, there is a circle, a class of people, who won a right, who were guaranteed a right. Canada tried to say they didn't have that right; they tried to justify it. Those arguments failed, and that right was recognized. Now the government is taking those same people and trying to pull them out of that protection and use some of the same justifications. This isn't a dialogue. This is the court saying, “This is the law” and the bill saying, “No, it's not the law. We say something else is the law. We say something else is constitutional”. That is just wrong, and frankly, we don't think it will withstand a constitutional challenge, and the result will be costly relitigation of the same point that's already been decided by the Supreme Court of Canada.
In the minute I have remaining, I don't want to spend too much time on it, but I do want to touch on this idea of prior judicial approval that continues to come up in committee. It is a complete departure from current end-of-life practices, and it's one that, of course, as many of you will know, Canada has tried before in respect of abortion, and it was rejected in the Morgentaler decision. The court there held that this procedural barrier of prior approval contributed to violating the charter rights of women by creating delay and, fundamentally, by directly interfering with women's autonomy to make choices about their own bodies by putting a state approval in place in front of their choice. Our experience as counsel with the exemptions right now is that prior approval is costly, time-consuming, prone to delay, and a significant barrier to access. It would be a real mistake for Parliament to reproduce a prior state-approval function for this kind of profoundly personal medical decision when it was soundly rejected nearly 30 years ago in relation to other profoundly personal medical decisions.
Good morning everyone, and thank you so much for the invitation to join you. As some of you may know, I co-chaired the provincial-territorial expert advisory group on physician-assisted deaths. Most recently I've been working with the Joint Centre for Bioethics task force on medical assistance in dying, in collaboration with health system stakeholders, to prepare for the implementation of medical assistance in dying in Ontario.
Today, though, I'm speaking as an individual. Although the chair has advised that we should not take a philosophical approach, I will be tapping into my disciplinary expertise in ethics and policy to provide an additional perspective to today's conversation.
Over the last few days I've had the opportunity to listen to the testimony of several panels. It has been fascinating and admittedly predictable to see convergence in some areas and continuing divergence in others. Bill is fundamentally an amendment of the Criminal Code within the parameters of the Charter of Rights and Freedoms and the charter ruling, and it has implications for the conduct of health care. But it is not the comprehensive regulatory regime envisioned in the Carter decision.
This week's discussions underscore how much of the work that we are collectively undertaking through this consultative process is not just legal, although it's about legislation and proper jurisdiction, nor political, although it is part of a parliamentary process. It is also fundamentally what I would call values work, by which I mean the pursuit of a right balance in of three ethical goals: recognizing and protecting individual autonomy, alleviating or minimizing suffering, and preventing harm. All three ethical goals have been articulated in witness testimonies over the course of the last three days.
As written, Bill proposes one way to balance these three ethical goals. Specifically, as noted in the preamble, it seeks to strike the most appropriate balance between
the autonomy of persons who seek medical assistance in dying, on one hand, and the interests of vulnerable persons in need of protection and those of society, on the other.
It proposes that this balance be achieved by limiting access to medical assistance in dying to competent adults whose natural deaths are reasonably foreseeable.
Is this the most appropriate balance? Testimony in the last three days suggests otherwise, and I would agree. Witnesses have rightly challenged the definition of “grievous and irremediable medical condition” and particularly proposed paragraph 241.2(2)(d), that is, the much-beleaguered “reasonably foreseeable” paragraph.
In my brief, I recommend removing that “grievous and irremediable” portion entirely and amending proposed paragraph 241.2(1)(c) to bring greater clarity, coherence, and consistency with the parameters already laid out by Carter.
Given its definition of “grievous and irremediable”, Bill denies medical assistance in dying for competent persons who have a “grievous and irremediable medical condition that causes...enduring and intolerable suffering” but who are not—quoting from the legislative backgrounder—“nearing the end of their lives” or “on a trajectory towards their natural death”, and whose medical condition is not itself fatal.
One might argue, as some witnesses have done, that to limit medical assistance in dying this way offers an important safeguard to protect vulnerable persons who might, as per the preamble, be “induced, in moments of weakness, to end their lives”. But if, as other witnesses have argued, persons like Kay Carter would not be eligible for medical assistance in dying, then many suffering Canadians are being left behind by Bill .
To paraphrase Mr. Bauslaugh's testimony from yesterday evening, Bill rations compassion only for the suffering of those who are dying. For many, including me, the balance of autonomy, protection of the vulnerable, and minimizing of suffering have not yet been achieved with this definition of “grievous and irremediable”.
There is another area that puts into question whether Bill is successful in balancing these three key ethical goals. Several witnesses yesterday spoke about the exclusion of mature minors, competent persons who are enduring intolerable suffering from psychiatric illness, and competent persons seeking to make an advance request for medical assistance in dying.
These exclusions, possibly temporary pending further study, as per the non-legislative commitment articulated in the preamble, are explained in the legislative backgrounder as necessary to protect “vulnerable persons” in these “complex” situations. However, exclusion of competent persons on the presumption of vulnerability does not serve the end of balancing autonomy and preventing errors and abuse and may, I fear, actually have the opposite effect of marginalizing and further entrenching the social vulnerability of the very individuals we are seeking to protect.
The protection of vulnerable persons turns on safeguarding competence, voluntariness, and consent. Exclusion of otherwise competent persons may be justifiable to the extent that this is proportional and necessary to prevent another injustice. Failing this, though, these exclusions violate the autonomy of competent persons in these groups and unjustly force these individuals to remain in a state of enduring and intolerable suffering.
Waiting until the fifth year following royal assent to address the results of additional study would be neither reasonable nor just. Hence, echoing other witnesses, my brief recommends that Bill be amended to establish an expedited schedule for study of medically assisted dying involving mature minors, competent persons with primary psychiatric illness, and persons who have given advance consent while competent.
I will close my brief remarks with the final reflection on vulnerability as it relates to Bill . The call to protect the vulnerable is one that we all share, and it's morally praiseworthy. However, we must ask ourselves who decides who is vulnerable. Is it the individual through his or her lived experience, or is it the rest of us in society who decide what type of vulnerability matters and to whom, and what the appropriate response to vulnerability is?
Witnesses have offered different responses to these questions. Some wish to set limits on which competent person should be eligible for medical assistance in dying, excluding those who are perceived to be in need of protection or susceptible to moments of weakness. Others wish to set up procedural safeguards to protect competence, voluntariness, and consent.
Bill offers an uncomfortable compromise among these different responses, tilting the balance of ethical goals precariously away from preserving individual autonomy and minimizing intolerable suffering of competent persons.
I know we can do much better for Canadians.
How is judicial oversight working now in terms of the constitutional exemption? Are there inordinate delays?
My sense is that this doesn't appear to be the case.
I think it's worth reviewing that data and looking at it. Certainly it is not meant to cause inordinate delay, although Mr. Paterson hearkened back to the abortion experience. We're several decades after the fact. We have technologies that should be able to allow virtual connections so that people can have more expedited review.
The even broader issue to consider with judicial oversight is whether there is a public interest in knowing how this takes place and in being as transparent and objective as we can so that Canada can say to itself and its countrymen and to the international community that although the Supreme Court has made this legal, that does not necessarily mean that it has made it medical. We have not yet figured out whether or not this clearly fits into the system of health care.
Having been on the external panel, I went around the world and spoke to different physicians, and I can tell you nobody comfortably responded to the question that yes, this is part of medicine. We had one physician in Oregon who described this as an act of love. We had a physician who was engaged in these practices in the Benelux countries, who himself was directly involved in this, and he said this is not medicine; this is a social act; this is a change in our social contract.
Well, again, if that's the case, wouldn't Canada want to commit to the most transparent process possible, the most objective process possible, and for the first five years insist on judicial oversight, not to create inordinate delay, but to say we're going to do this in a very transparent way, and we're going to be courageous enough five years from now to live with the outcome of that data? If the data says that we have been too restrictive, then I think all of us need to be adherent to the data and say that it is time to open it wider. If the data says that there have been many instances vis-à-vis judicial oversight where people have been found to be vulnerable, and other steps needed to be taken, then we have to stand back and say, well, perhaps we are narrow enough, or we need to be even narrower.
Those are the rationales that I would offer for judicial oversight.
First of all, I'd like to say thank you to each of the panellists separately.
Dr. Chochinov, we had the benefit at the Senate/House committee of your colleague Maître Pelletier, who was very helpful. You weren't able to be there so it's good to meet you here. Thanks for your work on the expert panel.
Dr. Gibson, your leadership in the provincial and territorial task force is really quite remarkable, and thank you so much for all of the work that you have done respectively.
Of course, Mr. Paterson, than you for your dogged litigation in the Supreme Court as an intervener in Carter. We're very fortunate to have you here.
I want to start with you, Dr. Gibson, on the issue of vulnerability. I want to give you an opportunity, because you were going quickly at the end of your remarks on the issue of vulnerability.
Could you elaborate a little for us and put it in the framework of Bill and explain how we can do much better in conclusion?
Some of my current concerns are about the way in which, in a sense, the shift from the Carter decision to Bill seems to have been motivated by a real concern about vulnerable populations. We've heard from Mr. Arvay this morning about this having led to certain exclusions of persons who have been labelled and classified as vulnerable.
I think that's a dangerous shift, actually, because as long as we label somebody as vulnerable, we are eroding their capacity. We are presuming that they are not capable, and in so doing we are treating them as unequal to the rest of us in society. I think that's a dangerous direction to be moving in.
At the same time, we are concerned about vulnerability. I think there are other mechanisms through which we can meet that concern. The current safeguards that are articulated here are definitely on the right track, but I start to become nervous when we move in the direction of thinking of prior review, of judicial oversight, which I think is motivated by a concern sometimes framed as enhanced transparency but more often as a way to address issues of vulnerability, while we have mechanisms within health care practice that would better serve that goal, and indeed, from a patient perspective, ensure a much more seamless experience for them at the end of life.
With regard to the judicial review process, we have had some experience over the last three months of cases going through the judicial review process to receive access to assisted death. One of the individuals who went through this process pleaded that this not be the mechanism by which they access assisted death because it is a burden, at the end of one's life, to be going through that particular process.
There are a number of reasons. I've enumerated some of them, and our written submissions describe the matter in a little more detail.
Let's say there was another charter rights case in which there was a class of persons who won a right. Take gay marriage, for example. Let's say that in response to a case on gay marriage—or pension rights, or that kind of thing—the government of the day said, we're going to bring in a bill, but because the plaintiff was a gay man, and although yes, there was mention of lesbians and trans people throughout, and so forth, we're going to just restrict it to gay men, and it will be up to lesbians at some point in the future to bring another case.
In some ways this feels very analogous to that. There was a right recognized for an entire class of people. Now this bill is reaching in and taking people out of it. The dialogue, if I may say so, between Parliament and the courts is meant to be, in terms of rights recognition, about the implementation of the right. We can all have different views on how many doctors and how many witnesses and waiting times, and so forth. The committee will know our views; others have different views.
That's what the dialogue is about. It cannot be about simply cutting people out.
A great example comes from not even the “reasonably foreseeable” context, but the “incurable” context, wherein, as you'll note in our written submissions, you could very well have a person in late-stage cancer—anal cancer, in the example we used in our written submissions—for whom further rounds of very painful and difficult treatment could potentially, for her, cure her illness, could eliminate the cancer; yet she may very well say, “That is going to cause burns to my vulva and to my anus and cause me to have sexual dysfunction and cause all these other awful things—even in potential success, if I do succeed—but I don't want to face that.” That person could very well be cut off because of this “incurability”.
What the Supreme Court said was “irremediable”. Then they defined it: they said “by any means acceptable to the patient”. There have been some questions about this. I know Mr. Bittle had an exchange the other day with the Department of Justice about it and about whether this is the same or different. The minister and officials have tried to suggest, I think, that it's the same, but fundamentally it appears different to us.
The minister contended that while there's still a piece about the pain or suffering not being remediable by conditions acceptable to the patient, it's different:, because that individual could already be knocked out by the “incurability” criterion, because a doctor might well say, we could potentially cure this for you, and then, the fact that there might be some other remedy or series of remedies, some of which are acceptable to the patients and others which aren't, is irrelevant, because we've made incurability the baseline.
Those are just a few different ways in which we think this doesn't comply with the Carter judgment.
That's an interesting question. There's been a great deal of debate on what it means.
It's a difficult term. I think it means that somebody is on the course towards death. There has been a variety of terms used, whether “terminal” or “less than six months” or “reasonably foreseeable”. I think this term provides perhaps some further latitude than what currently exists in Oregon, for example.
Oregon, as you know, uses “less than six months”. In reference to Oregon, when we visited there, what Eli Stutsman, the lawyer involved in drafting the legislation for both Oregon and the State of Washington, said is that even after 17 years of experience with the Death with Dignity Act, there is no appetite whatsoever to extend the criteria beyond six months. Even when he was asked about 12 months and about whether he was excluding people who might otherwise access dying with dignity, he said there is no appetite, even amongst the strongest proponents; and that six months or less is what they've restricted it to after 17 years of experience.
The fact is that we're going to have to set the bar somewhere, and I think “reasonably foreseeable” death is probably a prudent place to set that bar, and that we should see, after five years' experience, where it takes us.