Proceedings of the Standing Senate Committee on
Legal and Constitutional Affairs
Issue No. 9 - Evidence - May 12, 2016
OTTAWA, Thursday, May 12, 2016
The Standing Senate Committee on Legal and Constitutional Affairs met this day at 10:30 a.m., in public, to examine the subject matter of Bill C-14, An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying); and in camera for the consideration of a draft report.
Senator Bob Runciman (Chair) in the chair.
[English]
The Chair: Good morning and welcome, colleagues, invited guests and members of the general public who are following today's proceedings of the Standing Senate Committee on Legal and Constitutional Affairs. Today we continue our hearings for our pre-study of Bill C-14, An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying).
For our first hour, we have with us, from UNICEF Canada, Marvin Bernstein, who is the Chief Policy Advisor; and from Euthanasia Prevention Coalition of Ontario, Alex Schadenberg, Executive Director; and Hugh Scher, legal counsel, who is joining us by video conference from Toronto. Also joining us are Joan Gilmour, a professor at Osgoode Hall Law School, York University; and Errol Mendes, a professor with the Faculty of Law - Common Law, University of Ottawa.
Thank you all for being with us today.
I believe, Professor Mendes, you will lead off with opening statements, followed by Mr. Bernstein.
Errol Mendes, Professor, Faculty of Law - Common Law, University of Ottawa, as an individual: Thank you very much, Mr. Chair. I'll begin with a very brief statement of my presentation, which I gather you all have copies of.
We can all agree that the purpose of Bill C-14 in the wake of the Carter ruling is an attempt to reconcile two critical things facing Canadians: the principle of human dignity and autonomy with the protection of the vulnerable. We can all agree on that. However, if a statute attempting to reconcile those ends up creating certain flaws which potentially could render major parts of the legislation unconstitutional, I think it's your moral and constitutional imperative to try to remedy that situation. I suggest that the flaws that are most likely to be found unconstitutional are those that refer to the definition of a "grievous and irremediable'' medical condition.
As many experts who have appeared before you have stated, the criteria in section 241.2(2)(d) are inconsistent with the Supreme Court of Canada's decision in the Carter ruling. In that ruling, the court did not require that illnesses, diseases or disabilities be incurable or that those seeking assistance in the peaceful passage to death should have reasonable foreseeability of their final end.
Some of the experts have also stated that access to assisted dying in the act falls so far beneath the minimum that it would not even have allowed Kay Carter herself to have qualified under the provisions. I want to quote to you from statements made by Kay Carter's relatives in a CBC report.
Lee Carter stated that her mom suffered from spinal stenosis, a condition that wouldn't kill her but would leave her paralyzed.
"She did not have a terminal illness and she wasn't dying, but she was experiencing unimaginable suffering that could have lasted for many more years,'' said Carter on Parliament Hill Thursday.
"But now under the proposed legislation for a medically assisted death in Canada, Kay Carter would not qualify.''
If this assertion is true, then many of the provisions in section 241.2(2)(d) could be regarded as unconstitutional and not in accordance with the fundamental ruling of the Supreme Court of Canada.
What can we do about it? My suggestion is that if we have an honest attempt to reconcile those two fundamental values facing Canada, there is a way of amending (d) to make it constitutional. In my presentation, I have offered you those suggestions.
In the interest of time, I don't want to go through my presentation, but in brief it's this: You can collapse subsections (a) and (b) in section 241.2(2) into the following provision: that a person has a serious illness, disease or disability, including those that create an advance state of decline in capability.
You're ruling out the word "incurable'' when you combine subparagraphs (a) and (b).
Likewise, I'm suggesting in my presentation that the most contentious phrase — "reasonably foreseeable'' — can be amended in (d) to have the following wording, that their disease is not necessarily terminal, but that their death is not too remote, taking into account all of their medical circumstances. And the rest of the section can follow.
Why did I suggest that this alternative wording could be constitutional? In some respects, it is because the Minister of Justice herself is moving towards that wording. In her discussion of the language in the bill, in debates on the bill in the House of Commons and before this committee too, she has stated that she deliberately did not include the six- month limitation that you find in other types of legislation of this accord, because they wanted to leave it flexible for allowing medical practitioners to take into account all the circumstances in the subsection.
The minister herself, in the debate introducing Bill C-14, seemed to be accepting a change of wording to make it clear that it is not necessarily terminal illness that could trigger this legislation, but there had to be a requirement that death is not too remote.
The Chair: Professor Mendes, I have to ask you to wrap up, please.
Mr. Mendes: Why not replace the words "reasonably foreseeable'' with the words "not too remote?'' I suggest that if you did that, and, in addition, removed the word "incurable,'' it could make section 241.2 constitutional.
Marvin Bernstein, Chief Policy Advisor, UNICEF Canada: Thank you for the opportunity to present. Because medical assistance in dying has now been established for competent adults, which we see as the floor for eligibility for medical assistance in dying, this question naturally arises: What about other groups, such as mature minors? This is a question that deserves an answer based upon careful deliberation.
From the standpoint of UNICEF Canada, we certainly support this kind of careful examination and scrutiny in this committee, the House of Commons committee, pre-introduction of the bill and the expert committees. It's really important to take the time to get this right.
This is a better way of approaching this, rather than becoming embroiled in a Charter challenge, which I think is the logical extension of denying the same eligibility to mature minors. Not all children, but mature minors.
This is a complex, difficult and sensitive issue on which, understandably, there are a range of perspectives. UNICEF's concern is the rights and well-being of children. With little availability in terms of evidence about the implications for children, we are guided by a balanced child human rights-based approach, court precedent, principles in the Charter and the Convention on the Rights of the Child.
UNICEF believes that this right should be extended to mature minors who are competent to make end-of-life decisions for themselves, but with additional potential safeguards as a measure of last resort. The existing legal regime in Canada already extends to competent, mature minors and the rights make health and survival-related decisions. The Supreme Court of Canada stated in the decision of A.C. v. Manitoba (Director of Child and Family Services), that ". . . it may be arbitrary to assume that no one under the age of 16 has capacity to make medical treatment decisions . . .'' That was even when there may be life-and-death consequences. In its decision, the court endorsed the mature minor doctrine in matters of medical treatment decision making, which emphasizes capacity and maturity rather than a simple age threshold.
UNICEF Canada supports the recommendations of the earlier Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying, where they felt that an age threshold was arbitrary, and supports the recommendation of the Special Joint Committee on Physician-Assisted Dying that there be a two-stage legislative process, with the first stage applying immediately to competent adult persons 18 years or older, followed by a second stage applying to competent mature minors, which would come into force no later than three years after the first stage is enforced. In fact, this is very close to the recommendation advanced to that committee by UNICEF Canada. This would allow sufficient time for informed research and broad-based consultation to occur and the appropriate safeguards and due care considerations to be identified.
One further wrinkle that we're advancing is that during that three-year waiting period — I want to make an oral amendment to "one-year'' in the submission which should read "three-year'' — that we're contemplating, there should be a legislated exemption that would allow mature minors to bring an application before a Superior Court judge to obtain judicial approval to have their matter considered based upon the criteria established in Carter, similar to the approach taken by the Supreme Court of Canada in the supplementary decision of Carter where there was an extension of four months, so that we don't have an unfair prejudicial situation continuing for three years with no remedy that can be accessed by mature minors.
We already have, as I say, existing legal precedent. We have the Charter, and we have the Convention on the Rights of the Child that we are obligated to consider. Canada ratified the Convention on the Rights of the Child on December 13, 1991, and those principles continue to apply. In fact, in A.C., Justice Abella, writing for the majority, referenced international human rights instruments and indicated that the mature minor doctrine was consistent with the principles set out in the Convention on the Rights of the Child.
The Chair: Thank you, Mr. Bernstein.
We'll move on to Professor Gilmour.
Joan Gilmour, Professor, Osgoode Hall Law School, York University, as an individual: Good morning and thank you for the opportunity to speak with you.
This bill impermissibly narrows who can seek medical assistance in dying from what the Supreme Court of Canada recognized in Carter. Because of that, it will not survive scrutiny under the Charter of Rights. The most significant concerns are with the list of factors that must be present to constitute a grievous and irremediable medical condition, as set out in section 241.2(2). I recommend that that section be deleted in its entirety.
In Carter, the Supreme Court already determined who is entitled to seek assistance in dying, that being competent consenting adults who have a grievous and irremediable medical condition causing enduring suffering that is intolerable to the individual in the circumstances of his or her condition. Whatever bill is passed, it cannot retreat from that pronouncement. But Bill C-14 does just that, and it does so by adding additional conditions which try to carve out a smaller subset of people than the court identified in Carter and assert that only they have a grievous and irremediable condition.
I'll focus on the government's added criterion that the person's natural death has become reasonably foreseeable. That condition is found nowhere in Carter, and the facts of the case and the judgment itself indicate the opposite. The specific individuals include not only Gloria Taylor but also Kay Carter, who had spinal stenosis. We are given no indication that she was facing death in the near term. Despite the government's assertion in its legislative background document that she was, it offered no support for that conclusion. In any event, when the court in Carter describes the cruelty of denying medical assistance in dying to people who it recognized were suffering from a grievous and irremediable illness, it referred to evidence from people who had motor neuron diseases and other degenerative illnesses. Not all of these are fatal and for many, not any time soon. The prospect of a long period of suffering can make their situation even more intolerable.
Further, the requirement that natural death be reasonably foreseeable is unworkable. The government backgrounder explains this term in contradictory ways — on the one hand, a period of time that is not too remote or, for those not terminally ill, someone "otherwise nearing the end of their lives,'' but on the other hand, also stating the exemption would apply to someone whose medical condition causes them to "irreversibly decline and suffer for a long period of time.'' So the government's own explanations of "reasonably foreseeable'' are contradictory. In any event, what makes something "reasonably foreseeable'' in law is not limited to events that are "close-ish'' in time. The likelihood of something occurring is what matters most.
Moving on, I recommend second that the section requiring the person to reconfirm their request immediately before assistance in dying is provided be deleted. People who can access this assistance by definition are experiencing intolerable suffering. For some, that will mean terrible pain or other difficult symptoms. They are legally entitled to effective treatment for those, which may include sedation. It is cruel to require them to forgo treatment so that they can be brought back to a state where they meet the legal tests for giving consent again.
Third, I recommend the section imposing a 15-day waiting period be deleted from the bill as well. It's presumably meant to ensure that people are constant in their decision. It is an arbitrary time frame that could prolong suffering. And it doesn't apply if death or loss of capacity is imminent; then the health professional decides. I recommend that such an assessment should always be left to the health professionals and the person concerned, as we do with all other kinds of treatment, including removal of life-sustaining treatment.
I'm not going to touch on the issue of mature minors. Mr. Bernstein has done so already. I want to reference the proposals that some have made that there be additional judicial, tribunal, or other review; and I urge that those suggestions be rejected. This is a choice the person concerned is making with their health care provider. It is one of the most fundamental and personal decisions. Subjecting that to another layer of legal scrutiny is an unwarranted intrusion that would not provide an effective safeguard but would impose unnecessary and onerous requirements on someone enduring intolerable suffering.
In closing, some of the provisions in this bill are meant to protect people who may be vulnerable; but the bill goes too far. We cannot trade off the rights of another group of vulnerable people, who the court in Carter accepted were entitled to seek assistance in dying. That is a broader group of individuals than the bill covers. If this bill is passed in its current form, their suffering — though grievous, irremediable, enduring and intolerable — will continue. It doesn't have to.
The Chair: Thank you very much. I'll move on to our final opening statements and remind the representatives of the Euthanasia Prevention Coalition that they are sharing the opening statement time.
Hugh Scher, Legal Counsel, Euthanasia Prevention Coalition of Ontario: Thank you, Mr. Chair and honourable senators. I note Professor Mendes' comments at the beginning. It seems to me that there are those who would like there to be absolutely no restrictions whatsoever relative to end-of-life practices like euthanasia or assisted suicide, and on the contrary, those would not wish to see these practices legalized whatsoever. In between is where I think the Supreme Court of Canada fell in rendering its decision in Carter.
We would like to suggest four fundamental principles and prospective amendments you may consider as a means of trying to improve upon the bill. Let me start from the outset with the points raised by my friend Professor Gilmour. First is the issue of effective oversight.
It's our position that effective oversight by way of an independent judicial or tribunal prior review is essential, and indeed the only means by which we can potentially ensure prevention of the abuses that have occurred in other jurisdictions, such as Belgium, particularly for a regime such as proposed here, which is predicated upon a Benelux style of euthanasia founded in the Netherlands or Belgium, which basically uses what we would consider to be health care requirements of consent and voluntariness as the fundamental elements of prevention of abuse.
First of all, the use of the Benelux model is indeed a significant mistake for Canada. It imposes a model that has the highest risk and rates of abuses of any jurisdiction in the world. We know, for example, that in 32 per cent of cases, people killed by way of euthanasia in Belgium under the Flanders death certificate studies were killed without request and consent, and in 47 per cent of those cases, the cases weren't even reported to the overseeing body after the fact. In not one of those cases was a doctor prosecuted for the unlawful conduct. That's the framework within which this bill is being introduced and indeed carries with it many of the same elements that would allow for these abuses that have arisen in Belgium.
Prior independent judicial or tribunal review is imperative in order to ensure that the restrictions and/or the safeguards that Parliament seeks to put in place are indeed adhered to and respected, failing which the actions engaged in are criminal. One of the difficulties with this bill is that it seems to conflate the criminal law jurisdiction of Parliament and the provincial health care jurisdictions in a way that, in a sense, negates the overseeing obligations of Parliament from a criminal law perspective to ensure that those who engage in otherwise criminal conduct are indeed held responsible for their actions.
One of the primary aspects of that within the bill is the provisions particularly within section 246 that provide for blanket immunity for a whole host of groups, including health care practitioners, but also any layperson who in any way participates in an end-of-life practice as set out under this act. That, in my view, is an overbroad and unnecessary measure that is very distinct from any regime in the world which does not provide for any blanket immunity for participants in these actions. Indeed, it will make it nearly impossible to prosecute anybody who might seek to disavow the safeguards Parliament seeks to put in place and ultimately acts against them.
It is imperative that this regime not go forward, for example, as has happened in Quebec, based upon a lack of transparency and founded upon a fraud. By that what I mean to say is that Quebec and other jurisdictions allow doctors to effectively falsify death certificates by stating that the cause of death is not the intentional killing of a patient by a doctor by way of euthanasia, or an assisted suicide that might be committed, but rather the person being stated to have died by way of the underlying illness. That is a fabrication and a fraud, and it will lead to a complete lack of transparency that will ultimately lead to the kind of creeping of conduct that others coming before you are asking for with the ever-increasing expansion of these practices, to mature minors —
The Chair: Please come to a conclusion.
Mr. Scher: Yes, sir. In conclusion, I would simply reiterate that the need for independent oversight, the requirement to ensure no level of blanket immunity, and the requirement to ensure that the criminal law jurisdiction is respected by ensuring that there's a level of oversight and respect for the obligation to prosecute those who depart from the standards set out by this act is essential as a fundamental underpinning for this subject.
Senator Jaffer: Thank you to all of you for being here. This is a very difficult subject we're dealing with. Your presence here helps with our work.
Professor Mendes, you've been talking about the issues regarding the constitutionality of this bill. The minister and the officials from the ministry were extremely confident. In fact, the minister said that she was confident that this bill is Charter compliant. Of course, we absolutely respect what she says.
Can you elaborate on how your suggested amendments address the concerns of the many criticisms we have heard in the phrase "natural death has become reasonably foreseeable,'' by using the same language that the Minister of Justice has used to explain this clause?
Mr. Mendes: Thank you, senator. If you amend those sections the way I'm suggesting, it puts a clear statement in section (d) that it is not only terminal illnesses that come within the provisions of the definition. That has to be in there. When you add the phrase "not too remote,'' it then leaves the ability to judges and others, if there's any contestation of that, that it allows Kay Carter and others in opposition to come within the definition.
The definition of "not too remote'' can be many years in advance, as in Kay Carter's situation, for example. Given any possible litigation of that wording, I think it would clearly pass section 1, if it ever came to litigation as to whether or not that is sufficient. I think it's an amendment which preserves the bill on the whole. It includes the wording of the minister herself and provides the ability to save this bill in the ultimate conclusion.
Senator Jaffer: Mr. Bernstein, you have worked for many years, first as an ombudsman and then an advocate and now for UNICEF. My challenge is does the two-step process enable mature minors to receive equitable treatment?
Mr. Bernstein: I think that is a framework that can work in terms of taking the time to legislate the ability of mature minors to access medical assistance in death, and there could be an amendment to the provisions that we are recommending to enlarge it from competent adults who are over the age of 18 to include mature minors.
There could be a delay in the proclamation of that provision for a period of time that it would take to explore the safeguards and balancing. Does there need to be more scrutiny? How do we prevent young people from being manipulated by caregivers, spiritual advisers and others, recognizing they have certain rights and capacities and maturity, but they may be subject to other forms of exploitation? What is the balancing? We need to be clear in terms of amending this bill to include mature minors but incorporating some kind of framework that would allow for the comprehensive study to take place.
For example, there's been no indication that young people have been consulted. Under Article 12 of the convention, that's a very important consideration.
The other thing that isn't well understood is that in many provinces' health care legislation there's already a presumption of capacity that has to be rebutted. There isn't a specific age threshold. Generally, what Justice Abella was talking about in the A.C. case is that the more serious the decision, the graver the implications of the decision, the higher the onus in terms of a court or physicians being satisfied that there is the maturity to make those decisions.
Senator White: Professor Gilmour, you talked about contradictory terms. I don't think I figured out what you thought the solution to those contradictory terms was.
Ms. Gilmour: My solution is that we actually delete section 241.2(2), which sets out the definition of grievous and irremediable medical condition.
I have comments as well about subsections (a) and (b), but subsection (d), I think, is particularly problematic, and I would say it should be deleted.
Senator White: Deleted, and replaced with what?
Ms. Gilmour: To section 242.2(1)(c), which simply refers right now to a grievous and irremediable medical condition, I would import the wording from subsection (2)(c):
. . . that illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable . . . .
In other words, I would import the wording from Carter.
Senator White: Thank you very much.
Senator Baker: Thank you to the witnesses for their excellent presentations — especially their written presentations — which this committee will certainly consider.
My question, I suppose, is directed to either Professor Mendes or Professor Gilmour. Both of them are experts in their fields, and they're quoted in case law from time to time, Mr. Mendes especially, relating to section 7 of the Charter, so I would defer to him.
We've heard another side of the legal argument, and I will just put my question at the beginning. There won't be any supplementary, so the chair won't cut me off.
We have heard the argument, for example, that the trial judge in Carter made no determination whatsoever about anybody by the name of Carter as far as medical-assisted death is concerned. It was about a Ms. Taylor. And at paragraph 1414 of the trial judge's decision, the conclusion is that:
. . . there will be a constitutional exemption permitting Ms. Taylor to obtain physician-assisted death under the following conditions:
(a) Ms. Taylor provides a written request.
(b) Her attending physician attests that Ms. Taylor is terminally ill and near death, and there is no hope of her recovering.
When the Supreme Court of Canada took that, at paragraph 126, the declaration of invalidity, it says:
We have concluded that the laws prohibiting a physician's assistance in terminating life . . . infringe Ms. Taylor's s. 7 rights to life, liberty and security of the person . . . .
It goes on to say ". . . people like Ms. Taylor . . . " And then, the parameters of the decision are in the next paragraph, 127, in which they say:
The scope of this declaration is intended to respond to the factual circumstances in this case.
In other words, the factual circumstances were about Ms. Taylor, who is terminally ill and only had a certain number of days left to live. That's the other side of this argument: what the Supreme Court of Canada actually said in its judgment.
My question, very briefly, is this: Don't you think that no matter what we eventually decide on the wording of this bill, there are going to be constitutional challenges? They will either be on section 7 — you are an expert on that section — and an individual violation of rights, or on section 15, public interest litigation, as we saw in the case of the Downtown Eastside — you're nodding your head — sex workers of Vancouver, British Columbia. If you go one way, it's a violation of section 7. If you go too far the other way, it's a violation of section 15 and public interest litigation.
I'd like for you to comment on my statements generally.
The Chair: You have approximately two minutes to respond.
Mr. Mendes: I think you heard from Joe Arvay, who was the counsel for Kay Carter, that it was clear at the trial level it was not only the case of Gloria Taylor but also that of Kay Carter — and many others in the situation of Kay Carter — which was being examined — the mountain of evidence that the trial court applied not only to Gloria Taylor but also to the situation in which Kay Carter found herself.
We have to keep in mind, and it's clear throughout the judgment of the Supreme Court, that the court is referring many times in the judgment to the findings of the trial court in the trial division, which then would lead itself to say that the final declaration is applicable as much to Gloria Taylor's situation as it is to Kay Carter's. When you have the testimony of the lawyer who was clearly there, it demonstrated that position, so it absolutely applies to both situations.
Ms. Gilmour: Might I add a response to the question, "Who are people like Ms. Taylor?'' They're people who, in the Supreme Court of Canada, were recognized as having a grievous and irremediable medical condition, enduring suffering intolerable to them in the circumstances of their case. The court is very clear about that. It's not limiting itself to people with ALS, for instance.
If you look in paragraph 14 of the Supreme Court of Canada's judgment, you see them talking about some of the evidence: "Other witnesses . . . described the 'horrible' choice faced by a person suffering from a grievous and irremediable illness.'' Then they go into some details and "described the progression of degenerative illnesses like motor neuron diseases or Huntington's disease . . . .'' I do not think we can read the reference to "people like Ms. Taylor'' in the Carter decision in that narrow fashion that was first described.
Senator McIntyre: Thank you all for your presentations. There is no question that this is a complex, personal and divisive issue. Some stakeholders who have appeared before us in the last two weeks have suggested that the government has taken a reasonable approach to the issues of medical aid in dying. Others have identified, as you have indicated, potential legal issues with the bill, such as restricting the availability of medical assistance in dying, or MAID. Some have even argued that MAID will be available only to terminally ill individuals, although, as you know, the bill does not explicitly state that one must have a terminal illness to have access to MAID. Some have argued that if only terminally ill individuals are eligible for MAID, it would obviously be contrary to the Carter decision.
That said, some stakeholders who have appeared before us have suggested — and it's never too late for this — that the federal government should invoke the notwithstanding clause. Others have suggested the government refer the bill to the Supreme Court of Canada for a determination as to whether the bill complies with the Charter of Rights and is consistent with Carter, to avoid future potential Charter challenges, as outlined by Senator Baker.
May I have your thoughts on that, Professor Mendes?
Mr. Mendes: There's a saying, which I totally believe, that perfection is the enemy of the good. We're trying to achieve the balance I mentioned in my presentation between the two fundamental values that we're trying to deal with here: human dignity and autonomy, and also protecting the vulnerable.
Senator Joyal and others have talked about the two cases in Quebec where people have literally starved themselves to death. What concerns me is having a bill addressing that situation so that we don't have another like that. My amendments make the bill constitutional and allow it to go forward and prevent those sorts of situations happening again.
I think any discussion about section 33, or any of the other things, is actually an enemy of the good and potentially the enemy of those people whose lives may be at stake.
Senator McIntyre: Would others care to comment? Ms. Gilmour?
Ms. Gilmour: Thank you. I think the notwithstanding clause would be a particularly unfortunate way to go on this. It's a profoundly personal, intimate and fundamental decision. We should not say that the Charter of Rights doesn't apply to this.
Secondly, in terms of a reference to the Supreme Court of Canada, the better course by far is to get it right in the first place in the legislation that is passed. There are ways to do that that don't require wholesale amendments to be added.
Alex Schadenberg, Executive Director, Euthanasia Prevention Coalition of Ontario: The Euthanasia Prevention Coalition of Ontario is also concerned about the wording of the bill not achieving the other side of the issue, which is protection of people in vulnerable times in their lives. Our question is, does this bill uphold up the other side, so that we actually have a balance? When you look at the wording of the bill, it does not do so.
For instance, while the concept of two physicians or two nurse practitioners making the decision somewhat fits the criteria of the law, it says they must only be of the opinion that someone fits the criteria of the law. This sort of language is a minimum standard. The minimum standard, therefore, in this case doesn't actually protect someone who is going through a very vulnerable time in their life. It doesn't actually achieve that balance. We see that as well as the concept that it allows anyone to actually do the act. You see this in the bill. Nowhere in the world does such legislation allow anyone to do the act, and yet this bill allows anyone to do the act — not approve the act but to actually do the act.
Once again you have a situation where somebody who could be a spouse or in whatever situation is now a party to the decision and then to the act to actually cause death. That is a very dangerous thing. It actually undoes the concept of whether or not there are protections for vulnerable people in the bill to create a balance.
Senator Joyal: Professors Mendes and Gilmour, are you aware of the debate that took place in the Supreme Court in January when they heard the request of the federal government in relation to the extension of time? Are you aware of that?
Mr. Mendes: Yes.
Senator Joyal: I have the transcript of the debate. Two justices of the Supreme Court rejected the interpretation that a person has to be terminally ill or close to death to be allowed physician-assisted death. I quote Madam Justice Karakatsanis. She asked the lawyer, Mr. Frater, who represents the federal government:
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. I'm worried that inherent in all of your submissions is this is there an acceptance or a presumption I guess.
In the mind of Justice Karakatsanis, Carter rejected "terminally ill,'' or that the person has to be "à la fin de vie,'' as the Quebec legislation mentions.
Justice Moldaver of the Supreme Court said:
. . . the law that has been promulgated in Québec is, if anything, narrower than the test that we set out in Carter so that to the extent you met the law in Québec you would necessarily meet the law as set out in Carter.
The Supreme Court has already stated twice that Carter doesn't include any time factor in relation to the death. That's why even your amendment, in my opinion, could be challenged in the court because you say "not too remote from death.'' You reintroduce a time factor, the proximity to death, which Karakatsanis and Moldaver say have been excluded from Carter. It is a very, very important element for consideration in proposing amendments. I would be much closer to Professor Gilmour to exclude (d) from the definition of "grievous and irremediable condition.''
Mr. Mendes: Senator, all I can say is that perfection is the enemy of the good. If you actually get rid of the sections, as my friend has suggested, it would unbalance the balance between human dignity and autonomy and protection of the vulnerable.
It is admissible and would be constitutional to have the concept of "not too remote'' because it would satisfy the condition of Kay Carter. It would satisfy the two gentlemen who starved themselves to death. "Not too remote'' by any definition that I know of would include those whose lives are not in total health but include some element of suffering. Keep in mind that there have to be the additional concepts of intolerable suffering.
It would definitely satisfy those conditions of those two gentlemen. Again, it's a question of whether you want to have a law that is struck down or doesn't go forward or a law that is not perfect but is basically good.
Ms. Gilmour: I would agree with you that the Supreme Court of Canada in Carter and the two judges you refer to in the January discussion have already confirmed that the decision in Carter does not apply only to people with a terminal illness; it's broader. In part the government has adopted this term "reasonably foreseeable'' because it knows it can't say "terminal illness'' as it's rejected in Carter. The problem with reasonably foreseeable, as the government has explained, is that it is too vague and internally contradictory. The government talks about it being a short time, but then that one could suffer for a long time. We don't get sufficient guidance from that. In fact, we get riding off in all directions.
[Translation]
Senator Boisvenu: Welcome, everyone. Ms. Gilmour, I fully share your opinion that this issue should be kept out of the courts. That was not done for mental health issues, and many families have to go through constant appearances before the courts to deal with cases involving mental health. I think we should let health professionals take care of health issues.
I think we have two relatively serious options available — passing this bill or rejecting it. This is a matter of risk, and the risk I see if we were to pass the bill — and you can tell me if I am right — is that we may find ourselves here with you again in a year or two studying another bill to amend the one before us, which seems rather flawed to me. On the other hand, should the bill be rejected, the Supreme Court decision in Carter would apply and, according to my interpretation, the Carter ruling provides the provinces with rather clear guidelines for managing this matter from legal and medical standpoints.
Is my perception of risks related to the rejection or passing of this bill pretty clear?
[English]
Ms. Gilmour: I would say that if we don't have legislation and are simply left with Carter applying, we would be in a situation where, I would expect, outside Quebec, which has a framework in place, there would probably be considerable reluctance on the part of health care practitioners to participate in medically assisted dying. My concern would be that the practical reality on the ground would be quite a roadblock to its implementation.
That said, certainly the regulatory colleges and the provincial governments have a big role to play in governance in this area. It is better, in my view, if there is a piece of federal legislation, but it should be both Charter- and Carter- compliant.
[Translation]
Mr. Mendes: I will answer in English, as I want to express my thoughts clearly.
[English]
One thing that worries me about not having any law in this area is that it opens up the possibility of having the Carter ruling be the basis of people seeking. Anyone who has anything to do with law, as my colleagues would recognize, knows that any approach to the courts is very expensive. The average cost is in the range of $50,000. How many of us here in this room could afford that? And there is the possibility of appeals, et cetera. It's absolutely critical for some law to come forward in the wake of the Carter ruling. My plea to you is do not look for perfection; look for the good.
Senator Plett: Mr. Bernstein, I want to read UNICEF's mission statement before I ask a question. It states:
UNICEF is mandated by the United Nations General Assembly to advocate for the protection of children's rights, to help them meet their basic needs and to expand their opportunities to reach their full potential.
I repeat: to reach their full potential. Given that studies in the Netherlands and Belgium show that people who were depressed are four times more likely to request assisted suicide, and that this bill does not require illness to be terminal, and there are suggestions that mental illness should be the sole factor in making a decision, do you not see a major problem with the consideration of allowing vulnerable children to request assisted death? Have these children, in your opinion, reached their full potential?
Mr. Bernstein: In terms of looking at the rights of children, children certainly have the right to be protected and to enjoy a certain quality of life, but there may be children who are experiencing irremediable conditions, intolerable and enduring suffering, and they should have the right when they reach a point of sufficient maturity to make some determinations for themselves. One of the reasons that we are advancing this period of time, this second phase, is to work out some of those considerations, to look at some of the safeguards. Do we need to look at involving additional physicians? What kind of oversight and monitoring is going to be in place?
Senator Plett: Please answer my question, sir. A mentally ill, depressed 16-year-old, do you believe that that 16-year- old has reached his or her full potential? That's your mission statement. Do you believe they have reached their full potential when they — I don't want to use the word "only'' because it's serious — but their only illness is depression?
Mr. Bernstein: There may be other factors that are combined with the psychological suffering that are giving rise to that particular condition. Certainly young people should have access to psychological and psychiatric counselling, different family supports, extended family, but if it reaches the point where the suffering falls within this definition, and if a competent adult has the right to access medical assistance in dying based upon a certain set of circumstances and conditions, that should not be denied, not to all children, but to mature minors.
Mr. Schadenberg: I wanted to comment on the question that we have been bringing up that there is no effective oversight in this bill. You have a system where either two doctors or two nurse practitioners or one of each will make the decision that they're of the opinion that the criteria of the law have been met, and they're going to make this decision based on these conditions, which are very difficult at all times.
We have been saying that to ensure that the balance is actually met, you need either judicial oversight, which is what the Supreme Court agreed to in January — this is what we have right now — or a system that is similar to Ontario's Consent and Capacity Board, where it's done quickly and there's actually effective oversight and we're assuring, without a question, that the concepts being brought up by Senator Plett — that is, someone is going through depression and there might be great help for them — are actually being dealt with effectively and these vulnerable people are being protected. That would be effective oversight, and that's not there at all.
Senator Eaton: My questions are going to be addressed to Mr. Bernstein and Ms. Gilmour.
If you take away the irremediable terminal illness, if you open it up to minors, the Belgian and Dutch experience has shown that kids with autism and anorexia — I mean, suffering is subjective. If we did what you wanted by deleting end of life out of the bill, and we opened it up the way you would like, would you be in favour of a Superior Court judge signing off? Somebody who has a certain distance from the matter could judge things objectively, make sure all the safeguards have been looked at. People aren't shopping for doctors or nurses who agree with them. Would you agree to something like that?
Mr. Bernstein: I think this should be a determination made by physicians and medical individuals who have expertise in terms of assessing capacity and looking at the implications of the decision.
Senator Eaton: They could make the case before the judge.
Mr. Bernstein: I don't think that reverting back to a judicial framework is the way to go. I think it's going to inject, as my colleague indicated, more costs, delays, complexity and appeals.
Senator Eaton: I don't think cost should come into life-and-death situations. I can see hundreds of people with disabilities, especially kids with terrible disabilities, parents, pressure. It worries me. A hands-off judge could be very good, especially in the case of what you would like, Professor Gilmour, if the end-of-life sections were taken out.
Ms. Gilmour: I didn't say get rid of "irremediable.'' I would keep that; that's language from Carter. What I would get rid of is the subsection that talks about the serious and incurable illness.
I was not speaking in terms of terminal illness, because the language that's used in Carter, and even the language that's used in the legislation, doesn't talk about terminal illness. With respect to minors, I didn't have time to get to this —
Senator Eaton: Even for not minors. If "terminal'' is taken out of the bill the way it is now, what is the language? Irremediable?
Ms. Gilmour: Irremediable.
Senator Eaton: And you want that left in?
Ms. Gilmour: Correct, but moved up to section 242.2(1).
Senator Eaton: Would you be in favour of a judge signing off?
Ms. Gilmour: No, I would not. I don't think that judicial approval is necessary, and I don't think it would provide any more of an effective safeguard. We already leave profound decisions to physicians and health professionals all the time, if you think about removing life-sustaining treatment, or withholding it. We leave those decisions as it is.
Senator Eaton: It's at the patient's request.
Ms. Gilmour: When we're talking about a competent patient. With respect to withholding life-sustaining treatment — and this is something we are not talking about in this bill — that can also be at the request of a substitute decision maker. I don't really want to go down that tangent because it's not our subject here.
There is a possibility for a competent patient to request the removal of life-sustaining treatment, for instance, as in the case of Nancy B. in Quebec. There's also a possibility that a substitute decision maker can request that, either following a patient's wishes or if it's in their best interests. That's not what we're talking about in this bill.
Senator Eaton: That's right.
Senator Batters: Mr. Bernstein, first of all, I want to make sure that I have this correct. UNICEF, it's such a part of our lexicon, does it stand for United Nations Children's Emergency Fund?
Mr. Bernstein: That is correct.
Senator Batters: So the Carter decision dealt with competent adults, not children, first of all. In this particular bill, terminal illness and end of life are not currently required. You prefer to have these provisions apply to somebody under 18. Would you think that a safeguard of having terminal illness or end of life be required for someone under 18?
The joint parliamentary committee report also recommended that people with a sole basis of psychological suffering be allowed to receive physician-assisted suicide. Would it be your preference that this is allowed under this bill?
Mr. Bernstein: In terms of looking at the Carter decision, as I said in my opening remarks, we see that as representing a floor.
Senator Batters: I know, but I have a limited time here, so if you could just go to my questions.
Mr. Bernstein: I think it should be the same criteria that applied to adults and children.
Senator Batters: So no terminal illness, no end of life, even for someone under 18? That would be your situation?
Mr. Bernstein: That is correct.
Senator Batters: What about the people with psychological suffering as a sole basis? Would you want to see that also included? That was something the joint parliamentary report wanted to see. Is it your position that you would like to see that in this bill as well?
Mr. Bernstein: UNICEF is not suggesting psychological suffering, in and by itself, be the litmus test in terms of terminating life and making those decisions for young people.
[Translation]
Senator Dagenais: We are running a real marathon because of a decision requiring us to resolve a situation through a clearly incomplete piece of legislation. I am also wondering why we have to rush our decision.
My question is for Ms. Gilmour. Should the government refuse to amend Bill C-14 according to your recommendations — likely because time is of the essence and we need more time to flesh out our study — would you be more comfortable with having to temporarily live with the consequences of the Carter decision and holding public consultations across the country on issues related to the consent of people under the age of 18, mental illness and foreseeable death? Of course, I ask that you keep your answer brief.
[English]
Ms. Gilmour: It's a difficult question. Should we live with the vacuum created if no legislation is passed? The legislation, as it stands, is not Charter-compliant. If you pass the legislation, I think you're passing something that, as it stands, is not Charter-compliant, and it won't stand for very long.
It is a positive step to have legislation that sets out the conditions under which medical assistance in dying can be provided. I urge you to do your utmost to amend the law in a way that will make it Charter-compliant. We're not so far off that. I can't say pass a law that's not Charter-compliant, but I am very afraid that if there no law is put in place, then outside Quebec there will be reluctance on the part of those who would provide assistance in dying to do so because they won't feel that there's a firm footing for the actions they are taking.
The Chair: Thank you very much. I thank our witnesses for being here today and for assisting us in our deliberations.
Joining us for our second hour, we have, from the Canadian Association of Advanced Practice Nurses, Maureen Klenk, Nurse Practitioner; and from the Canadian Paediatric Society, Dr. Dawn Davies, Chair of the Bioethics Committee. Thank you for being here.
Maureen Klenk, Nurse Practitioner, Canadian Association of Advanced Practice Nurses: Thank you for inviting me to speak with you today. My name is Maureen Klenk, and I am a nurse practitioner. I am here today representing the Canadian Association of Advanced Practice Nurses.
It's most fitting I should be speaking with you today as it is International Nurses Day. Nurses worldwide celebrate Florence Nightingale's birthday. Florence Nightingale is the founder of the profession of nursing, and she was a strong advocate for improved patient outcomes.
Nurse practitioners are experienced registered nurses with a four-year degree who have returned to university for a master's degree, which includes both academic and clinical experience. Nurse practitioners perform client assessments at an advanced level, diagnose illness, promote health, prescribe treatments and medications, and monitor patients' responses. All of these acts are done in partnership with our clients, who work with their nurse practitioners to devise acceptable plans of care.
Nurse practitioner licensing across the country incorporates mastery of nurse practitioner competencies as put forth by the Canadian Nurses Association.
The Canadian Association of Advanced Practice Nurses has come today to let you know that nurse practitioners are prepared to provide patients with access to assistance in dying. We appreciate that you have included nurse practitioners in the language of Bill C-14. We understand that equitable access to medical assistance in dying across Canada will be important. Nurse practitioners will enhance this access, since they tend to practice in rural and remote areas and serve vulnerable and marginalized populations across the country. While our association embraces the opportunity to enhance access to medical assistance in dying, we are here today to provide feedback on the current format and wording of Bill C-14.
The first item we would like to draw your attention to is clause 241.1. Without the inclusion of the ability to counsel, there is a risk that nurse practitioners will be left vulnerable. For example, in working with a client who has come to discuss options regarding medical assistance in dying, a nurse practitioner might document that the patient has been counselled regarding prognosis, response to treatment and options.
There is a concern that the word "counsel'' could be taken out of context, thus implicating providers who are meeting the standard of care. To enhance clarity, we request that subsections (a) and (b) be included within the exemption.
A second item we would like to draw your attention to is the age restriction included as part of the eligibility criteria for receiving medical assistance in dying. As an organization and as nurse practitioners with a special interest in equity, we feel this item is discriminatory. The use of an arbitrary age requirement does not take into consideration individual patient circumstances, history or choice. Pain and suffering have no age limit. A 16-year-old with a brain tumour will suffer as much as a similar patient at age 28 who meets the remaining criteria. It does not seem reasonable that a youth interested in seeking medical assistance in dying might suffer while waiting to turn 18. An arbitrary age threshold warrants review.
In addition, we are asking that the defining characteristics for a grievous and irremediable medical condition be changed. Items (a) and (d) from section 241.2 are not measurable. The term "serious'' is not well defined and is not a measurable criterion in clinical decision making. What makes one illness more serious than another? What is serious?
Within this same section, the term "incurable'' will raise some issues in practical application. If there is a cure somewhere in the world, is the condition considered to be curable? Is there a cure in final stages of development? These questions are important since there could be a cure available; however, it might not be accessible at the location and at the time the patient is experiencing the illness. Or, it might be available but not be covered under existing provincial drug plans. Furthermore, the patient must have the right to choose to refuse treatment even if it is available.
Finally, subsection (d) includes the term "natural death.'' This is not an acceptable term within health care practice and documentation. Vital statistics departments require a diagnosis linked to every death whether caused by lung cancer, kidney disease or Alzheimer's disease.
As well, "reasonably foreseeable'' is not measurable, whereas we feel that subsection (b) — "they are in an advanced state of irreversible decline'' — is sufficient to provide parameters for determining the expected clinical course. Therefore, we request both (a) and (d) be omitted from section 241.2.
The Chair: Dr. Davies.
Dr. Dawn Davies, Chair, Bioethics Committee, Canadian Paediatric Society: I'm Dawn Davies, a pediatric palliative care physician in Edmonton, Alberta, and chair of the Canadian Paediatric Society's bioethics committee, and it's in that capacity that I'm here today.
The Canadian Paediatric Society is a professional association that represents more than 3,200 pediatricians and subspecialists across the country. Our mission is to promote the health and well-being of Canada's children and youth, so we are grateful to have been invited to take part in this conversation.
I would like to address the question of mature minors, or children under 18 years of age who are deemed able to make serious medical decisions for themselves.
The question of whether to extend physician-assisted death to mature minors is understandably complex. At this time there simply is not enough information to reach an enlightened decision that balances the best interests of children and youth, and their families, with the possible harms.
It is appropriate that the first iteration of legislation on physician-assisted death does not include mature minors. It would be prudent to wait for outcomes research on physician-assisted death in the few jurisdictions where it is already permitted for minors, such as Belgium and the Netherlands. It is also important to note that most other jurisdictions that allow physician-assisted dying exclude minors, including all states in the United States and countries such as New Zealand and Switzerland.
Today, I would like to speak about what must happen before we can even start to consider the possibility of extending this legislation to include the pediatric population, as this is an ethical question that has yet to be carefully considered by Canadian society. Above all, we need to better understand what mature minors and their families know, feel and believe about medically assisted dying. We have not yet had these conversations.
The fact that competency can be accessed in children and adolescents in a variety of medical decision-making scenarios does not resolve the primary question of who may have access to physician-assisted death, nor does it identify whether an unmet need even exists.
As part of the information gathering process, the Canadian Paediatric Society strongly recommends comprehensive national consultation with a number of groups, including mature minors with serious disability or terminal illness and their parents, bereaved patients whose children have died after terminal illness or severe disability, and pediatric health care professionals.
We are not aware of any Canadian pediatric data either on requests for physician-assisted death for children and adolescents or on the opinions of Canadian pediatricians about physician-assisted death generally or their willingness to participate in physician-assisted death personally. The CPS will be gathering this information from health professionals over the coming months.
If Parliament amends the Criminal Code to permit minors to access physician-assisted death, the CPS recommends that Parliament be exceptionally clear as to the substantive ethical and legal foundations for legalizing this practice.
We do have anecdotal reports of Canadian pediatricians receiving requests for physician-assisted death by parents on behalf of their never-competent young children. The high public profile of Carter v. Canada has led some parents to erroneously interfere that, as parents, they will have the right to request physician-assisted death on behalf of their child. Examples include parents of children with known terminal illnesses like cancer, or catastrophic neurologic injury.
Although requests for physician-assisted death may arise as a feature of one's autonomy even in the context of excellent palliative care, optimal symptom control is a necessary precursor to physician-assisted death.
Consider an American study of 141 bereaved parents whose children died of cancer. These parents reportedly considered requesting the hastened death of their child in 13 per cent of cases, but this jumped to 34 per cent of parents who believed they would have wished for hastened death if their child had been in uncontrolled pain. Clearly, excellent palliative care must be a precursor to the discussion of physician-assisted death.
High-quality pediatric palliative care must be accessible for all children and youth who need it, but this is currently not the case in Canada. Extrapolating from research in B.C., it is estimated that one child in every 1,000 under 18 years needs palliative care services. This translates into 900 in B.C. alone for any given year. Yet, a 2002 Canada-wide study estimated that only 5 per cent to 12 per cent of children who may have benefited actually received specialized palliative care services.
Although a 2012 follow-up study showed marginal improvement, the vast majority of children still did not receive care from these programs. Pediatric-specific palliative care across Canada should be enhanced, adequately funded and equipped to care for children and their families in the setting of their choice, especially in their homes and home communities.
The CPS maintains that palliative care and physician-assisted death are philosophically and clinically distinct and should, organizationally, remain as such. Parents and clinicians already fear the notion of palliative care, and we often need to explain how palliative care optimizes quality of life for as long as it lasts. If these same physicians were also to participate in physician-assisted death, we are concerned that this fear and apprehension of palliative care might intensify.
Legislation may be passed sometime in the future permitting physician-assisted death for mature minors. Before this happens, legislators must ensure careful and extensive study of the moral, medical and legal issues. We believe it is prudent to evaluate and learn from the experience of medically assisted death restricted to patients over the age of 18 years.
The Chair: We'll begin questions with our deputy chair, Senator Jaffer.
Senator Jaffer: Thank you to both of you. You are the last two witnesses for our pre-study, and I think you're ending our work on a note that will help us understand even better.
The thing I'm taking away from what you said, Ms. Klenk, is that pain and suffering has no age limit. A 16-year-old with a brain tumour suffers as much as a 28-year-old. Can you clarify what you mean by arbitrary age, and at what age do you think we're talking about arbitrary?
Ms. Klenk: To be honest, I'm not a lawyer.
Senator Jaffer: I'd like you to draw from your nursing experience.
Ms. Klenk: From my nursing experience, I have been in a situation where I have accepted a 15- or 16-year-old signing a consent for surgical treatment for their own child. On the one hand, we say that we have single mothers who are 14 and can sign for those surgical consents. Would they not have the ability to request medically assisted dying and know what they're asking for? I don't know if there can be an arbitrary age. That's part of the assessment that would need to be done, I believe.
Senator Jaffer: Dr. Davies, I have a question for you. Senator Lankin and I are going to suggest that apparently an amendment was accepted in the house that within 180 days panels be set up for mature minors, to look into how we deal with issues. We're going to suggest that they report back in 360 days. Can you comment, first of all, on what these panels should look like? Who should be on the panel? For example, I think young people should be on the panel. Second, is 360 days enough?
Ms. Davies: I don't think 360 days is enough. If we look at Belgium and the Netherlands, since the legislation passed in Belgium, there has been no reported case of a mature minor requesting or at least receiving physician-assisted dying. In the Netherlands, it's somewhere between two and five cases per year, although those numbers are hard to find.
When my colleague says that pain and suffering have no age limit, that's entirely true. I think your first Charter challenge will be on behalf of parents seeking physician-assisted dying for their never-competent children. It will not be mature minors, I don't think, that will be mostly requesting this. I think that looking at vulnerable children should be done as a group, and it's going to take a lot longer than one year.
Senator Plett: Senator Jaffer asked about arbitrary age, and you've talked about arbitrary age, Ms. Klenk. There isn't an arbitrary age. It's adult. Eighteen is, in Canada, an adult. That's why that age was chosen. It's not an arbitrary age. If we lower the age of an adult to 16, I guess it would be that. Fourteen-year-old mothers are children. There's no question about that. They need help, but they are children.
You asked the hypothetical question: If there is a cure available somewhere in the world, is the disease curable? Certainly it is. If there's a cure available somewhere in the world, the disease is curable.
But my question is around nurse practitioners, not around those two issues. You've used the argument that nurse practitioners should be included in this because they work in remote areas. Of course, the bill doesn't say "nurse practitioners in remote areas.'' The bill says nurse practitioners anywhere in Canada, including in the city of Toronto. The argument is made that we need these because that's all that there is up North in these remote areas, and I've worked there.
Carolyn Pullen, in a question I posed to her having to do with conscientious objection — I think the answer is relevant in all cases — said:
In both the case of abortion and in medical assistance in dying, these are not emergency situations. There is time, even in remote or rural circumstances, where if a provider needs to recuse themselves from the process —
— in this case because of conscientious objection, but nevertheless —
— there would be policies and practices in place to bring in a substitute provider to provide that care.
Assisted suicide is not something that is happening every day by hundreds and hundreds of people, and I hope it never will. Nevertheless, when there is the odd case in Fort Hope of someone wanting assisted suicide, surely to goodness that's a serious enough case that we could send in a doctor. I would prefer a judge, but a doctor, at least, to assist in this. I believe in Ontario and in B.C. you are not allowed to prescribe narcotics.
So you can answer that, and then I would to quickly ask the other question with no preamble. I do want an answer from both of you, if you could, on your opinion of conscientious objection. If there is a person who does not want to do this, for whatever reason, should they be excluded and should they be able to recuse themselves completely from the process?
Ms. Klenk: Thank you for the questions. The first thought I'd like to reiterate is yes, we do work in rural and remote areas, predominantly. But I think what we really are saying is that we do have the knowledge, skill and judgment to take part in medical assistance in dying. Whether that's in Toronto, whether that's in Regina, whether that's in Arviat, Nunavut, the competence is still the same. I am licensed nationally to be a nurse practitioner, and I am able to perform those tasks wherever I am.
Where remote and rural comes in is that accessibility issue. While these aren't emergency situations — and yes, there would be time, most of the time — I do know of some cases where the decision does have to be made fairly quickly for that individual. I can think of cases of people with ALS where their condition has deteriorated rather quickly, and therefore they wanted to make the decision within a shorter time frame.
Would there be access? To be honest with you, we have to remember also that in health care we try not to work in silos. If someone were to ask me, or any physician, I would say, about medically assisted dying, we have to remember that that grievous and irremediable disease would mean that they would also have been in contact with many specialists.
Senator Plett: Do you agree with conscientious objection? I'm sorry. The chair will cut you off.
Ms. Klenk: My first call would be to that specialist to find out where —
The Chair: Senator Plett is looking for a quick answer, or I'll have to cut you off.
Ms. Klenk: Conscientious objection, of course, I believe that every practitioner has to follow their moral obligation.
Ms. Davies: I also agree that that should be enshrined, including no duty to refer.
Senator Joyal: Thank you both for your very enlightening presentations.
First, Ms. Klenk, I would like to return to the interpretation that would be given by a nurse practitioner on subparagraph (a) of section 241.2(2), page 5, the criteria that there be a "serious and incurable illness, disease or disability.'' You have commented quickly on "serious and incurable.'' In your opinion, what is the difficulty in interpreting the words "serious and incurable''? Would it mean that something could be serious and curable, or something could be incurable but not serious? What is the twinning of those two qualifications that needs to be attached to the illness, disease or disability?
Ms. Klenk: As a practitioner, I don't believe that either "serious'' or "incurable'' is really a measurable, accurate term in today's society. I believe that subparagraph (c), which reads, "that illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable'' is a solid definition that I, as a practitioner, could use to evaluate that individual's state.
Senator Joyal: But you would have to look into the health condition of the person, because the Supreme Court has mentioned that the person has to suffer from "grievous and irremediable.'' What those two paragraphs (a) and (b) attempt to define is "grievous and remediable.''
My question to you is this: Should we leave "grievous and irremediable'' not defined in (a) and (b) and keep (c), or should we try to find another definition of criteria that would be attached to "grievous and irremediable''? Because you will be the one in the future to interpret that.
Ms. Klenk: Yes. I believe that we should keep the "grievous and irremediable,'' and then we should keep (b) and (c).
Senator Joyal: So you feel comfortable to have the responsibility to pronounce if the patient is in an advanced state of irreversible decline in capability?
Ms. Klenk: In my practice, that would be something measurable. We could measure that the person with ALS is having less breathing function or the blood work. It's measurable.
Senator Joyal: About (a), could you say in broader terms why you feel it is difficult to give an objective definition to the words "serious and incurable?'' So we don't have a patchwork of definitions, it should be professionally framed to make sure a person living wherever would have the same interpretation of his or her condition.
Ms. Klenk: The crutch right there that you mentioned is if you use the word "serious,'' that could mean one thing to me and another thing to someone else. What is serious from a practitioner's perspective? At what point would something become serious? it's not a medical term that is generally used in practice. We tend to define it in other ways, such as, a "state of decline,'' or a "stage 4 cancer.'' We have other ways to define it that are measurable and have a meaning.
With "incurable,'' we're not taking in the patient-specific feelings about it. What if something may be curable but it's just not something that that individual feels is worth going through — that the treatment is not something they want to go through, yet they meet all the other criteria? You still would have to have the balance of the other criteria in order to allow this person to have medically assisted dying.
[Translation]
Senator Dagenais: My question is for Dr. Davies. Dr. Davies, I listened carefully to your presentation. If the legislation's scope was broadened to include minors — and this is a hypothesis — how, as a professional, could you process a request for assisted dying from a child, as mature as they may be, that would go against the advice of their parents, who would still be their child's legal guardians?
That is also part of our laws. I understand that the question is difficult, but I still wanted to put it to you.
[English]
Dr. Davies: It's important to point out that even in the most permissive places, such as Belgium, they have two tiers of law for mature minors and for adults and emancipated minors. In Belgium, the parents also need to consent. They need to agree with the child up to the age of 18; and in the Netherlands parents of 16- and 17-year-olds need to be informed, while under the age of 16, the parents need to agree.
If a mature minor were interested in medically assisted dying in Canada, first of all it needs to be restricted to terminal illness, not mental illness. The child needs to be clearly dying or so profoundly disabled that their life has no net benefit to them. To answer the rest of your question, parents need to agree.
There's the next thing we're going to come up against in our modern society. It's normal for parents who are together not to be on the same page with their child's terminal illness. One parent might agree and one might disagree. Then what are we going to do with parents who don't even speak to each other or are divorced and one agrees and one doesn't agree? There would have to be agreement of both parents, and despite our best intentions, even if you wanted to extend it to mature minors, many of those cases will wind up in court for those reasons.
Senator McIntyre: Ms. Klenk, Bill C-14 allows one physician and one nurse practitioner, or two nurse practitioners, for the purpose of assisting a patient with medical aid in dying. The federal government with the provinces and the territories will have to work together to come up with a framework as far as nurse practitioners are concerned. What kind of framework do you anticipate will be put in place? At the same time, could you elaborate on the scope of practice of nurse practitioners across the country?
Ms. Klenk: The scope of practice of nurse practitioners is very similar across the country. Many studies have been done about that scope. Somebody asked earlier, I believe it was Senator Plett, about the fact that in some jurisdictions nurse practitioners are not able to prescribe some of the controlled drugs and substances, but that is moving forward. I believe in Ontario and B.C. they are not yet able to. From a national perspective, we are able to prescribe, and it is basically the provincial jurisdictions that haven't made it so yet. But they are working on that and moving that forward. Once that is in place, the scope of practice across the country will be very similar.
You are right in that regulations will have to be put in place jurisdictionally for medically assisted dying to take effect for nurse practitioners. I assume it will also have to happen for the physician world. I'm not familiar with that, but I'm making that assumption.
Having Bill C-14, which lays out the national parameters, would make it more similar across the country if regulations have to follow some of the national considerations. I see a national rollout of regulations. I know work will be done by my organization, the Canadian Association of Advanced Practice Nurses, in relation to regulations. Work will be done by the Canadian Nurses Association to put together a framework that hopefully will be adopted by our provincial counterparts across the country.
Senator McIntyre: Nursing regulatory bodies should be the same across the country.
Ms. Klenk: I believe they should be. That's what we should strive for.
Senator McIntyre: Do you foresee any jurisdictional differences?
Ms. Klenk: Not in relation to medically assisted dying. I don't feel there should be any differences.
Senator McIntyre: Generally speaking, there should be some consistency.
Ms. Klenk: Yes.
Senator Batters: Ms. Klenk, you talked about looking for a particular amendment regarding adding the word "counsel.'' Can I just get some clarity on where you specifically would want that added?
Ms. Klenk: Sorry, I may have said that incorrectly. What I believe should occur is that in relation to section 241, subsection (2) says, "No medical practitioner or nurse practitioner commits an offence under paragraph 1(b) . . .'' They have eliminated the counsel section with that. I believe, and my organization believes, that both (a) and (b) should be included in that so that we are exempt from counselling as well as aiding because counselling is our standard of practice.
Senator Batters: Right, and that would be for medical practitioners as well as nurse practitioners?
Ms. Klenk: I assume it should be for them as well, yes.
Senator Batters: Okay.
The example you gave earlier in your opening statement was about a 16- or 17-year-old with a brain tumour. This bill, as we've heard numerous times, does not require terminal illness or end of life, so to speak about that is a bit of a false example.
I wonder if you think there should be such a requirement. You've spoken about your contention that those under 18 should be allowed to have medically assisted suicide, so I'm wondering if you think there should be an accompanying requirement that for those under 18 there should be a terminal illness or end-of-life requirement. Yes or no?
Ms. Klenk: No.
Senator Batters: Earlier we heard from a constitutional law professor who spoke about his preference that the phrase "not too remote'' be potentially inserted into this bill. You were speaking earlier about some particular phrases that you didn't think had enough medical preciseness. What do you think about the phrase "not too remote?''
Ms. Klenk: Again, that's really not measurable from a clinician's point of view.
Senator Batters: Okay, thank you.
Senator Lankin: Dr. Davies, when you were speaking earlier about your support for conscientious objection by practitioners, you said including no duty to refer. I'd just like to probe that a little bit.
We've heard from previous witnesses, particularly physician regulators across the country. They believe that is actually something of a provincial regulatory body jurisdiction. The balancing act is for patient-centric approaches to ensure accessibility, and whether or not there's a duty to refer or transfer care. Should that rest within the provincial jurisdiction?
Your comments suggest that it should be enshrined in the Criminal Code exemption. I would like you to talk about that a little more. Why do you reject the premise that it's provincial jurisdiction? Why is it better left there?
Secondly, just to help a layperson understand the difference between duty to refer and duty to enable a transfer of care, would you support a requirement to ensure a transfer of care?
Dr. Davies: I'm responding as a clinician. You've been speaking to lots of heads of colleges of physicians who represent their membership to a large degree. Unlike almost anything else I can think of in medicine, this has been imposed on us. I know it's about the patients, but I completely reject the language along the lines of we just need to suck it up. It's not why most of us went into medicine.
I would agree that in almost every other case there is a duty to refer or a duty to transfer care. I think that at a provincial level they're collecting lists of physicians willing to perform this procedure and that patients will navigate their own way.
To say there is a duty to refer makes people that may not be comfortable with this in any way, shape or form feel complicit in part of it. There's enough of a groundswell of change that people will be able to navigate themselves.
Senator Lankin: Is there a difference between duty to refer and duty to transfer care?
Dr. Davies: At a legal level maybe, but from a practical level, I feel like I have a duty to my patients either until the natural end of my relationship with them, or if I need to refer or transfer care because they're moving or whatever the case may be. I look at those equivalently. I don't know how the law would look at that.
Senator Lankin: Thank you.
Senator Pratte: To go back to Senator Joyal's question regarding the need to further define "grievous and irremediable medical condition,'' if we take away (a) and (d), there remain (b) and (c). I think most people agree with (c); it's the suffering part. Why would you feel the need to stick with (b), which is an advanced state of irreversible decline in capability? Why would you feel the need for (b) to remain?
Ms. Davies, you haven't pronounced at all on the need to decline what the Supreme Court said. If you may, I would appreciate your thoughts on this.
Ms. Klenk: Thank you for that. I am looking at this as a practitioner.
Senator Pratte: Yes.
Ms. Klenk: How will I use this in order to assess and to counsel my patients? You can measure an advanced state of decline. You can document it. You can look at blood tests. You can look at X-rays. You can see that there will be an advanced state of decline. From that actual measurable data you collect, you watch and you monitor. At a certain point, it becomes clear that treatments are no longer working and that the person is still declining.
Subparagraph (b) is important to have because as a practitioner I feel that it is measurable, whereas you have to have a crystal ball to say that something is reasonably foreseeable in my clinical practice.
Dr. Davies: The language is purposefully vague based on how Carter was written, however, between ourselves and our patients; we can infer what is meant by serious, incurable, irremediable suffering. Reasonably foreseeable is built in. We're not going to come down with strict numbers of months of expected life. We're wrong all the time anyway, so I feel like it gives us enough to work with as it is.
Senator Pratte: What would you stick with?
Dr. Davies: I believe all of it. Sorry, I didn't bring it with me today.
Ms. Klenk: No problem. We can share. It's kind of marked up, but we can share.
Dr. Davies: It's these ones here? I'm good with (a), (b) and (c).
Senator Pratte: You can work with all of them?
Dr. Davies: Yes. The more information there is, the more we can use our discretion. There will be a lot left, unfortunately or fortunately, to everybody's discretion.
Senator Cools: I would like to thank the two witnesses for their very excellent testimony. Thank you, Dr. Davies, for speaking as a physician. I view myself as a modernist, but I do have concerns that the medical profession of doctors has been enlisted to do something most of the profession is not used to doing, and it will take a long time.
Why is it doctors have been enlisted? Why not pharmacists? Why not coroners?
If we look at the section of the bill at the bottom of the page, if I can read it, medical assistance in dying, definitions, 241.1:
The following definitions apply in this section . . . .
medical assistance in dying means
(a), the administering by medical practitioner or nurse practitioner of a substance to a person, at their request, that causes their death . . . .''
In medical terms, Dr. Davies, is this a treatment? Is the substance a medicine? Doctors daily administer medicine to patients, but I'm not aware that they administer other substances.
I'm very pleased that they did not use the term "physician-assisted death.'' That would have damaged the profession and the practice greatly. However, I have a lot of trouble with this sort of thing. Do you have any opinions as to whether or not there was a better way to script or draft this?
I'm still an old schooler. I still think of the doctor as the noble person who takes his or her Hippocratic oath. I have not been able to make the complete shift from the doctor as saver of life to the doctor as assisting in death.
Senator Plett: Hear, hear.
Senator Cools: I'm working on it, though. I cannot find the constitutional power to permit or order these deaths. The old principle has always been that no human being has an absolute interest in his or her life, that the King has an interest in every man's life and so does God have an interest in life. So we have an interest in each other's lives. That's why we have laws against murder.
Could you help me in my task to reconcile what seems irreconcilable?
Dr. Davies: It really is a departure for medicine generally, and I think the aim of the Carter case and of the legislation is to alleviate suffering in its extreme form. I think it is being viewed as a medical procedure, and as such, we need to leave a lot to the discretion of the actual patient and the physician, without too much outside interference, if that's the way it's going to be, because we make those decisions every day, as was pointed out by the previous panel, in terms of when it is appropriate to withdraw non-beneficial treatment, for example.
In terms of your question about substances, yes, they will be medicines. My understanding of the aim of that is so that people aren't doing botched jobs, if you will, of trying to self-medicate. For me and many of my peers, we would not currently have the knowledge of what the right medications and doses are to make sure we don't accidentally increase suffering during the dying process. It's going to require a lot of education for those that are interested.
Senator Cools: That confirms my concern that large numbers of doctors are going to be very afflicted by this.
Dr. Davies: Conflicted and afflicted, yes.
Senator Cools: Especially pediatricians. I had a friend who was a pediatrician, and he eventually switched fields in medicine because he couldn't handle seeing children suffer and die. I know a little bit about children dying because of where I was born. My parents lost two children six months apart. One was eight years old, one was two years old, and I was the child in between. I've always had a preoccupation with that phenomenon.
This is not a simple law that everybody's going to obey. It's going to cause a lot of conscience problems for large numbers of people that we have not even identified yet. At the same time, I don't think that we can ignore the fact that, unfortunately, these needs have arisen or are arising.
Senator Jaffer: Ms. Klenk, what is "patient-directed care''?
Ms. Klenk: In my profession, patient-directed care is care that we allow the patients to direct. It goes a little bit beyond patient-centered care where we try and make sure we, as providers, are acting in the best interests of that person. We ask them what they believe is the right method of treatment. We provide them with education and knowledge, and support decisions, but we also include them as part of the team that is looking at what treatment or management they would find palatable.
Senator Joyal: Dr. Davies, I don't want to become too legal and embarrass you, but we had witnesses who testified and referred to the decision of the Supreme Court in 2008 in the case of A.C. v. Manitoba.
Dr. Davies: It was 2009, and I'm very familiar with it.
Senator Joyal: You're very familiar; thank you.
At paragraph 96, the court stated seven criteria to measure the level of maturity of a mature minor. Since it's not a recent decision, it's already 2009, and I feel that your association would have had time to reflect upon it, were there other criteria you would suggest adding? What additional information should we seek in relation to the implementation of those criteria for mature minors to have the autonomy, as the court has said, so that mature adolescents are not unfairly deprived of their medical decision-making autonomy? The court has also recognized the autonomy of mature adolescents.
What additional reflection, in your opinion, should be added to those criteria that would be needed before we recognize the rights of access to medical assistance in dying for a mature minor?
Dr. Davies: I don't think anything needs to be added to the criteria. It's funny you should ask because I just reviewed it last night, not anticipating a question about it.
The kicker to that case is that even though they said all those things, they still found against her; so she was not successful in her case, and I think it's because other things come into it.
This is going to be even more accentuated if the case is about a minor asking for the right for a lethal injection. People sometimes refer to positive and negative rights. So a negative right to say, "You can't do this treatment on me'' is more powerful than saying, "I must have this'' or "I request this.''
Other things come into it, which are the child's best interests, how certain are we in our assessment, what do their parents think, and we're not talking about emancipated minors here. Someone who is already a teen mother is an emancipated minor. Somebody in prison is an emancipated minor. Those things are different, and I think we need to be clear.
It simply goes beyond capacity and competence assessment for such a significant decision.
Senator Joyal: I understand that in relation to mature minors the difficult question is to measure the mental capacity of the person to understand the implications of the decision, and of course the context under which the decision is being taken.
In relation to the accessibility to medical assistance in dying, any petition to the court in relation to section 15 that they are entitled to the same benefit, whatever their age, the court will want to establish their decision on the basis of their criteria, plus others.
The other one you had in mind on the basis of your practice, which other criteria might the court want to look into for the request, before concluding that they will give access to medically assisted death?
Dr. Davies: In my own experience, the crunch comes down to how voluntary it is. That's where our doubts always lie. In the case I can think of, how much did the church influence the child? How much did the different parents with different opinions affect the child? How come the nurses reported that when one parent was in the room the child behaved a certain way? It's so complex. Legally it sounds so straightforward, but in the real world the issue of voluntariness is not straightforward.
That was the final point I wanted to make. From a human rights perspective, the only thing we have any security in, in this whole process, is the voluntariness of it. There's going to be a net benefit to society if the only people who are ever considered for euthanasia are voluntarily asking of their own free will.
I worry about the non-voluntary nature, and this is exactly what's happening in the Netherlands, of parents creeping in. And the Pediatric Association of the Netherlands is saying that maybe it's okay that we end the life of the child to alleviate the parents' suffering. That is absolutely insane.
To me it comes down to net benefits, net harms, and the only way we will have a net benefit is to preserve voluntariness, and that's what we wrestle with when we're looking at mature minors.
The Chair: Thank you both for very interesting and helpful testimony.
(The committee continued in camera.)