Proceedings of the Standing Senate Committee on
Legal and Constitutional Affairs
Issue No. 9 - Evidence - May 11, 2016
OTTAWA, Wednesday, May 11, 2016
The Standing Senate Committee on Legal and Constitutional Affairs met this day at 2:15 p.m. 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).
Senator Bob Runciman (Chair) in the chair.
[English]
The Chair: Good afternoon. Welcome colleagues, invited guests, 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 the two co-chairs of the Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying, Jennifer Gibson and Maureen Taylor.
Thank you both for being here. The floor is yours.
Maureen Taylor, Co-Chair, Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying: Thank you very much for the opportunity to speak to you today about Bill C-14. My co-chair, Jennifer Gibson, is going to address some of the concerns from the view of our expert advisory group work. With Jennifer's permission, I will speak to you today with the voice of the patient and caregiver, because the true stakeholders in this discussion are the people who have to live with intolerable suffering.
My own personal journey in assisted dying stems from my late husband, Dr. Donald Low, who died in 2013, seven months after he was diagnosed with an inoperable brain tumour. All of the complications he feared at the end of his life — paralysis, weakness, inability to talk or toilet himself — were realized. We tried but failed to find a way to allow him a peaceful, quick death, and since then I've become an advocate for the right to choose a medically assisted death.
My husband would have met all the criteria under Bill C-14. His natural death was reasonably foreseeable, he was in an advanced state of irreversible decline in capability, and his disease was incurable, yet Bill C-14 is flawed, and if Don were here today he would tell you the same thing.
While we know from other jurisdictions that the majority of patients who will seek assistance in dying will be in advanced stages of cancer, Bill C-14 would exclude other patients who have a grievous and irremediable condition and who are suffering intolerably but whose death may not be reasonably foreseeable.
You have already learned from people far smarter than me that this wording is sure to attract another court challenge and that the government will lose. It is clear this bill has been drafted by lawyers and not people with knowledge of medicine.
Multiple sclerosis, Huntington's, Parkinson's disease, spinal stenosis, ALS, Alzheimer's — patients with these conditions may live for years with intolerable suffering before they die.
Denying these patients the option of an assisted death simply because some groups classify them as vulnerable populations insults their capacity to make their own medical decisions.
I work in a hospital with a unit that is home to patients who are on long-term mechanical ventilation. They are awake. They interact. They have ALS or MS or COPD, progressive diseases that rob them of the ability to breathe on their own. From time to time, some of these patients make the decision to have the ventilator disconnected. It's known as withdrawal of care.
After discussions with their families and the medical team, they are allowed this option, and by the way, they don't disconnect the tubes themselves. They die within hours or minutes.
If we accept those decisions as rational, why the double standard? Why would we not respect the rights of other patients whose circumstances are similar in almost every way, but for dependence on machines? Why can't those patients make the very same decision to die at a time when their suffering has been become intolerable? The intention and the result are the same.
In addition, I'm troubled by Bill C-14's definition of "grievous and irremediable'' to include the word "incurable.'' My fear is that individual medical practitioners will interpret this standard differently, which will result in uneven access to MAID for Canadians.
The legislation must emphasize that patients are not required to undertake treatments for their medical condition that are not acceptable to them.
Now advance directives. I know some of you are especially interested in that issue, and so are Canadians over 50. They want this as an option.
The government's reasons for excluding advance directives for patients who lose capacity seems to be that in the Netherlands, where advance directives are legal, physicians rarely honour them, so why permit something in Canada that physicians might just ignore anyway? I don't think that's a good enough reason to exclude advance directives. I think we can find language that allows a competent adult who has a diagnosis of something like dementia to articulate in advance those symptoms and deficits that for them would be considered intolerable. And if they should become incapable before those symptoms are realized, the physician should be able to evaluate the advance wishes and provide the assisted death; otherwise, these patients are trapped once they are closer to a reasonably foreseeable death. Their disease will have robbed them of the capacity to make a request, so this is cruel to me.
The justice minister's analysis of Bill C-14 argues that it strikes an appropriate balance between respecting autonomy during the passage to death while otherwise prioritizing respect for life. The ultimate way to guarantee respect for life is to offer Canadians the option of living their life as fully and completely as they choose until the moment when their suffering makes living intolerable.
Thank you very much.
The Chair: Thank you very much. Ms. Gibson?
Jennifer Gibson, Co-Chair, Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying: Thank you so much for the invitation to join you today. In my comments, I will pick up on a theme that Maureen introduced concerning putting patients at the centre of the discussion.
A patient-centred approach was a core commitment of the Provincial-Territorial Expert Advisory Group's work. It was the frame of reference for the special joint committee's report, and it is the compass foot of many witnesses who have appeared before you. Shortly after the Provincial-Territorial Expert Advisory Group's report was released, in December 2014, I received a message, an email from a member of the public. This person thanked us, the expert advisory group, for taking a patient-centred approach and for not limiting our recommendations to medical conditions with a high probability of death. The person related brief details about their medical situation and observed that there may come a time in a patient's life when a tipping point is reached in the balance of quality of life versus extending life. In the matter of assisted death, this person concluded that no patient is going to reach such a decision and request lightly.
I cherish this email for its generosity in reaching out to a complete stranger, me, to share a glimpse into the lived experience of someone contemplating an assisted death.
This brings me to my first observation about Bill C-14. Who does Bill C-14 serve? That is, whose suffering does it address and whose does it not? Many witnesses have observed that Kay Carter would likely have not met the eligibility criteria laid out in the bill. Indeed, it is not at all clear to me that the person who emailed me would have met the criteria either.
While there's prudence in a cautious approach as we learn how to implement medical assistance in dying in Canada, I urge you not to lose sight of those whose suffering will not be addressed. This includes those whose deaths are not reasonably foreseeable but whose medical conditions are nevertheless grievous and irremediable and whose suffering is enduring and intolerable. As we heard yesterday from the medical regulators, it may also include the exclusion of mature minors, who may be competent.
Maureen and other witnesses have already addressed the limitations of grievous and irremediable as a definition, so I will not retrace those considerations here but will simply add my voice to their concerns.
One area where I do think Bill C-14 gets it mostly right is in the procedural safeguards it outlines. Indeed, there are a number of areas where Bill C-14 does get it right, but I will focus here on the matter of the procedural safeguards. These I believe strike the most appropriate balance, and here I'm citing the preamble to the bill between the autonomy of persons who seek medical assistance in dying on the one hand and the interests of vulnerable persons in need of protection and those of society on the other.
It's worth noting that these procedural safeguards are a significant departure from how other end-of-life decisions, such as withdrawal of life-extending or life-sustaining treatment, are addressed today in health care practice. While I do not myself see a moral distinction between medical assistance in dying and those other death-hastening interventions, I do think the procedural safeguards underline the seriousness of the decision and reflect best practice from other jurisdictions.
Some witnesses before you have recommended that the procedural safeguards ought to be augmented to include prior review by a judge. There are a number of reasons why this recommendation must be rejected, such as pragmatic considerations of cost, timeliness and access; but from a patient perspective, the most important reason is the burden it would place on patients and their families at the end of their lives, not to mention how this disrupts the continuity of health care we are all seeking to achieve. A lesson can be learned from A.B., who was the first person in Ontario to be granted a constitutional exemption to access medical assistance in dying. After the Ontario Superior Court ruling, A.B. stated:
My only regret in these last months is that my family and I have had to expend what little energy I have left to fight this court battle. My wish is that our government will see fit to make permanent changes in the law so that no other family will have to do this ever again.
Finally, I will conclude my comments with an appeal for stronger language in the preamble concerning the non- legislative commitments of the federal government. In particular, I would like to see shorter timelines for the study of mature minors, advance requests and psychiatric illness as the sole underlying medical condition. I would also like to see, as has been recommended by the Provincial-Territorial Expert Advisory Group, the special joint committee and the Canadian Society of Palliative Care Physicians, an explicit commitment to create a pan-Canadian commission to advance quality and accessibility of palliative and other end-of-life supports for all Canadians.
Thank you. I look forward to our discussion.
The Chair: Thank you. We'll begin that discussion with the deputy chair, Senator Jaffer.
Senator Jaffer: Thank you, Ms. Taylor and Ms. Gibson, for your presentations, which certainly were very powerful. Ms. Taylor, you spoke about advance directives. You know we've been preoccupied with that. You explained that well, so I won't ask you.
Ms. Gibson, you covered the issue of courts, but the big issue with courts, we all know, is for a patient to have resources and the ability to go to court, and we know, and our committee is finding out, that access to courts is not that easy. There are many issues there.
I have sort of a technical question for both of you. I saw in your final report that you stated that a request for medical assistance in dying should be made through a valid patient declaration form and that the provinces and territories should establish requirements regarding the implementation of these forms. Intertwined with these forms is the issue of informed consent. In hearing this, we had a witness from the Canadian Association for Community Living note that only five provinces and territories have statutory standards of informed consent.
What would the process of creating such a national form look like, and how would you wish to ensure consistency across the provinces and territories in establishing standards of informed consent?
I accept that this is technical, and you may want to take some time to think about it, so I don't want to pressure you. If that's the case, you could certainly submit that later to the clerk and we will get a copy of it. It's up to you. If you are able to answer now, that's fine.
Ms. Taylor: I'm a physician assistant. Because of my training in medicine, and that of all physicians and nurses, we receive training in school to evaluate patient competency and capacity. Of course, we know that the patient has to understand the seriousness of their illness and the implications of the treatments they're undergoing in order to either accept or reject a therapy. I think while it's nice if there are standards across the country, some of that is already built into medical school standards. I'll just say that. On the rest of it, you're right; it's a little more technical.
We took the approach that as much as possible, Canadians should have access to a valid declaration form no matter where they live. There shouldn't be unevenness, so we would like the provinces and territories to get together at some point and have these sorts of standards that you're referring to.
Senator Jaffer: You spoke about your disappointment. We all know that a lot of the health, and even the operation, of the court system is within the provincial jurisdiction, and then there is the federal level. Both of you have had a lot of time to think about this. What were you hoping federal leadership would look like on this issue?
Ms. Gibson: I'm happy to take a stab at that. In many ways, I think the overall scope of the piece that has been carved out for federal jurisdiction is probably appropriate. When we were deliberating as a committee, trying to decide which things should fall within the provincial-territorial domain and regulatory bodies and which should be left to federal jurisdiction, this is close to that balance we were looking for.
There were some elements, though, that I've heard arise through some of the committee discussions, both in the house and in the Senate, pertaining to issues relating to conscientious objection. We would keep that in the provincial- territorial and regulatory domain, rather than in the federal space.
I would say overall it's probably about right, but there's a lot of work the provinces, territories and regulators need to do to figure out the details.
Senator White: Thanks to both of you for being here. I apologize for coming in late.
I have two quick questions. The first one is about the legislation that talks about medical practitioners and nurse practitioners, and that ultimately it could require two nurse practitioners or two medical practitioners. I would suggest a necessity that one of the two be a medical practitioner. Do either of you have an opinion about that?
Ms. Gibson: We contemplated this as an expert advisory group, and what we landed on is that it's really about scope of practice. So long as the scope of practice of physicians and nurses was sufficient to undertake the clinical work to assess a patient, it wouldn't matter. From province to province to province, I think the question is more what scope of practice has been defined, to ensure we have some consistency there.
It's not nurse practitioners writ large. It's those with the scope to be able to do this work.
I don't know if you have any additional comments on that, Maureen, but I do think it could be two nurse practitioners. That would be entirely appropriate.
Ms. Taylor: I'm a physician assistant, so if you think I'm going to insult nurse practitioners, you're crazy. It's delicate.
I agree that it's within the scope. Remember, two practitioners have to assess the patient, and that was a recommendation from us as well. A patient's oncologist might be in Calgary, but if they live far away where the nurse practitioner is their primary physician, you can use telemedicine for an evaluation from both.
Senator White: I have a perfect example. I'm not insulting nurse practitioners: I spent 19 years in the Arctic and I know how important they are, but I never saw one of them perform even a tube insertion into a lung without getting a doctor on the phone and having that dialogue. With telemedicine, there's no reason why you couldn't have access to a medical practitioner.
It is about scope, but there's no discussion about it in this legislation at all. It could be a nurse practitioner who graduated three weeks ago who hasn't had any scope when it comes to palliative care versus assisted dying. I agree with requiring the two, but I'm trying to figure out whether or not there's a necessity to — at this point in time and thinking about a review in five years — add legitimacy to the fact that we have two practitioners by requiring one of them to be a medical practitioner.
Ms. Taylor: It's provincial, too. Even nurse practitioners in different provinces may not have the same scope of practice. I think that's something you'll have to let the provinces do.
Senator White: I'm not looking for an argument.
My next question speaks to where the legislation states that the Minister of Health may make regulations, and one of those regulations they may make will be to gather data and information. I'm concerned about the word "may.'' If the legislation stated it "will'' make, then I would have no concern about that piece because, for me, a five-year review means we have the data to be able to discuss. Do either of you have an opinion as to whether or not that section should be an automatic versus a suggestion?
Ms. Gibson: It wasn't language that popped out at me, but now that you mention it, it actually would be consistent with our recommendations as the expert advisory group. We were looking for a federal level of oversight, as well as at the provincial level. If the change in language makes that so, I think stronger language is probably better.
Ms. Taylor: Data is crucial to studying this, so I would agree with you.
Senator Baker: Thank you to the witnesses for their excellent presentations.
I'd like to ask you a question regarding advance directives, which you addressed in your presentation. In the preamble to the bill, the government references advance requests by saying that the government has committed to develop non-legislative measures that would support the improvement of a full range of options for end-of-life care, namely situations giving rise to requests by mature minors and advance requests.
Right now, we consider advance requests to be within provincial jurisdiction. There are 13 jurisdictions in Canada, aren't there? I've read most of the laws authorizing advance directives, but I don't recall how many jurisdictions are without one. There must be only a couple of jurisdictions that don't have a specific piece of legislation.
Ms. Taylor: We know it's not universal across Canada, but I'm sorry, I don't know the exact number.
Senator Baker: Here's the point, though. I read most of the bills. They talk about advance directives, and the law is very explicit. It involves informed consent, and covers it off as far as you can imagine. Then, when you look at advance directives, say in this province, where you might be familiar with it, a normal advance request may include a section like the one I'm reading from now, which states, "I specifically refuse the following . . . .'' Then it goes on to electrical, mechanical or other artificial stimulation of my heart, and respirators or ventilators.
The next section says: "I specifically direct the following: a) Provide necessary medication to control my pain and control my symptoms even if such medication might shorten my remaining life,'' bringing on death in an advance directive today, in Canada, in provincial law.
When the government addresses this question, do you envision that it will be a part of the provincial jurisdiction — in the provincial act, just as this section shortens the life of an individual today — that the new authorization, which now becomes legal, would be a part of a provincial inclusion in their legislation? Is that how you envision this to take place?
Ms. Taylor: My concern is that if you don't touch this and weigh in, the provinces won't either.
Senator Baker: You don't see a distinction, then, between federal jurisdiction in this area and provincial jurisdiction? The provinces have seized on these. Nowhere do we see some federal overlap in advance directives. It seems that the provinces have just seized on that, and the federal government has stayed away from it. But you're suggesting that the federal government now take a positive step and enter an area — advance directives — that to this date has been solely provincial jurisdiction.
Ms. Taylor: I see what you mean. We were talking about advance directives on the way here. Jennifer, as a bioethicist, is more familiar with this. I probably have that same advance directive in my will; my father is an estate lawyer. I was surprised to learn that that is not a legally binding document in Ontario. In fact, if you're unconscious, your family can say: "No, no, no, we want you to do everything. Put the tube in,'' and the doctors will put the tube in.
Senator Baker: I stand to differ with you there. In the Ontario Court of Appeal, 1991, and the Superior Court of Ontario, 1990, it stands today that the doctors must — must — follow it. They have no choice.
Ms. Taylor: On the ground, I see things differently.
Senator Baker: I see your problem that if the provinces don't do it, you're afraid that each province won't do it, so you want the feds to do it in this proposed legislation.
Ms. Taylor: To at least make it allowable. What they've done in Bill C-14 is made it not allowable, so no province can come in and say that advance directives will be allowed if C-14 passes as is. At least make it possible.
Senator Baker: I don't understand that. Why would it prevent advance directives provincially?
Ms. Taylor: Because it says you can't, right?
Senator Baker: No, it doesn't. Nowhere does it address advance directives. It says that the federal government will look at it, and the federal government will then meet with the provinces. I imagine it would be under provincial jurisdiction down the road.
[Translation]
Senator Boisvenu: Thank you very much, Ms. Gibson and Ms. Taylor. Ms. Taylor, please accept my condolences for the death of your husband. I experienced a similar situation with a brother who died of brain cancer. We know that the last moments are very painful.
Yesterday, we heard from the College of Physicians and Surgeons of Ontario. Their clear position is that Bill C-14 seems to discriminate between the dying and the suffering. It would make assistance available to those who are dying, but would close a door on those who are suffering though not approaching certain or probable death. We heard from Ms. Simard, whose mother committed suicide by refusing food. In my view, that suffering was even worse than death, or the illness itself.
I want to make sure that I understand your presentations and positions on this bill, and that's what I'm hoping to hear about from you now. Does this bill discriminate between those who are dying and those who are not but are suffering from a disease, even if incurable?
My second question is about what the passage of this bill will mean. Will the situation be worse for people who are suffering and expecting a solution that would enable them to have a dignified end of life? Does this bill offer a solution, or must we take the time to improve it so that both categories of people are included?
[English]
Ms. Gibson: I'm not going to speak for Maureen, but I would certainly say we would agree that the consequence of leaving a whole swath of Canadians outside the scope of this bill is that they will continue to suffer and have no other avenue. If they wish to access an assisted death, we are forcing them to continue in their suffering. We could use the language of this being discriminatory. If it discriminates between types of suffering, then yes, I would certainly agree.
The question is, do we see this law-making as an incremental process? At least start here, and then we will expand it to the next and the next and so on. We've heard through our consultations and my continuing work in the area that there is a willingness among Canadians to expand the boundaries of what the bill currently allows.
I was at a town hall meeting in my riding speaking with constituents. They were saying that this is not just a terminal illness or an incurable disease. Let's address the suffering. Of course the bill does not say "suffering'' only, as it also says that we must value autonomy. It's not a bill that says we're going to try to address suffering only; it's also to reinforce the autonomy of individuals to assess what counts as suffering for them. To expand the bill to accommodate the other individuals would certainly be my wish.
Ms. Taylor: I feel like this committee is our last chance to get this part right. I accept that mental health, mature minors and advance directives might not get through this time. If you do nothing else, I'm begging you to get rid of the wording "naturally foreseeable death'' and the word "incurable.'' You could just do that and be true to the wording in Carter. "Grievous and irremediable'' means "severe'' or "very serious'' — the patient has to be suffering intolerably and have no treatments acceptable to the patient. If you can just go back to that language, I'd be very grateful.
Senator McIntyre: Ms. Gibson, in both your oral presentation and your brief, you raised the issue of judicial authorization. As you know, that safeguard requirement has a history of judicial recognition in use in precise contexts of authorizing judicial aid in dying. For example, Chief Justice McLachlin raised it in her dissent in Rodriguez, as did the trial judge in Carter and likewise the five judges of the Supreme Court in granting a four-month extension.
In addition, there's a well-established precedent for legislating quasi-judicial or judicial review of physician decision making in another health care context. In the province of New Brunswick, provincial legislation often requires such involvement in the involuntary commitment of a person to a psychiatric hospital. Tribunals are set for that purpose. I'd like to have your thoughts on this, please.
Ms. Gibson: In listening to the discussions at this table and at the house committee table, I've been hearing two world views colliding on how to think about assisted death. One is to view it through the lens of a legal issue. Then, health professionals and patients will frame this as a health care issue. They want a high-quality health care system. When they present and want to talk about death, they're talking about it with the physician in the physician's office or the nurse practitioner's office or with the inter-professional team. They're not seeing it as a legal issue. We need to be true to the continuity of care that we provide for Canadians and how they see this issue. They're not seeing it as a legal issue, although certainly in this conversation related to the Criminal Code, it certainly is.
I would note, going back to something I said in my comments, that when it comes to end-of-life decisions currently, our practice is not to move discussion about whether somebody's wishes ought to be respected to a tribunal table. Currently, we say that it's for the inter-professional team together with the patient and possibly the family to decide on the appropriate course of action. The bedrock of that is the patient's wish.
To distinguish this, for many patients it's an issue around another option at the end of life, not dissimilar to the other range of options, such as a hospice to access palliative care and withdraw life-sustaining treatment. But for Canadians the distinction is not there.
For consistency in health care practice, to move that decision to a tribunal would actually tend to erode the continuity of care and the quality of the patient experience at the end of life. To go back to what A.B. said in his concluding remarks as well, this was one of the most meaningful times in his life with his family. To make an appeal to have access to this as a service was time not well spent, although he certainly achieved the outcome he desired.
Senator Joyal: May I establish first who you are? I know who you are as I have the brief here. My colleagues around the table don't know who the Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying is, as you did not introduce yourselves at the beginning. I could read for the benefit of the minutes the preamble of the report, but could you introduce yourselves? Where do you come from? I apologize for the question.
Ms. Taylor: A brief history of the PTEAG. In August of last year, Jennifer and I got a phone call from someone with the Ministry of Health and Long-Term Care in Ontario. At that point we had not had a federal election yet. Had a federal panel been appointed yet? Not much had been done since Carter, and the provinces were getting nervous because the deadline, which was then February 6, 2016, was approaching. The provinces and territories decided they should start discussions, reach out to stakeholders and put together a panel to advise them on how to implement the Carter decision in the absence of something done at the federal level.
Jennifer, do you want to pick it up there?
Ms. Gibson: Just to qualify, 11 of 13 provinces and territories participated in this process, and indeed, representatives of the ministries of health and Attorneys Generals attended our advisory group meetings and listened throughout that process. Obviously, Quebec did not participate at that time, and B.C. was an observer.
Our mandate is important. The mandate was to provide non-binding advice to the provinces and territories about how medically assisted death — then called physician-assisted dying — would be implemented by the provinces and territories. Its mandate was distinct from what the federal expert panel's mandate had originally been framed as, which was to provide recommendations concerning the amendments to the Criminal Code. Our mandate was provincial and territorial.
Senator Joyal: On page 15 of your report — do you have it with you?
Ms. Gibson: Yes.
Senator Joyal: It's the chapter entitled "Legal Context.'' A preoccupation around this table, here, is the understanding of the scope of the Carter decision and to measure it with Bill C-14 to see how far the bill goes to serve the objectives of the Carter decision.
Today, you have proposed an interpretation of it. In that report, on page 15, you wrote:
It is notable that the Supreme Court did not limit the ruling to those unable to take their own lives, to cases of terminal illness, or to people near death. The Court's declaration is also not restricted to physical illnesses, diseases or disabilities, and includes mental illness.
Who gave you that interpretation of the Supreme Court decision so that you could include that in your report and share it with all the provinces and territories?
Ms. Taylor: One of the members of our expert panel was Professor Jocelyn Downie of Dalhousie University. She's quite well versed on the Constitution, and especially on this subject, so we relied on her. We had a lot of stakeholders, including lawyers, but we would not profess to be the final word on interpreting the Constitution.
Senator Joyal: The other preoccupation I have in relation to your approach is one I don't challenge. I think the approach was a common understanding shared among the provinces and territories and applied by Canadian courts since February 4, when the Supreme Court was seized, again, as you know, with a request to extend the implementation of Carter. Since then, there have been at least eight Canadian courts that have based decisions upon Carter.
When you read those cases, what strikes me is that some of them involve terminally ill people. I have one here about breast cancer — without giving the names of the parties, of course — and others involving other terminal forms of cancer. It's quite clear when you read the cases. But there are some other cases where the people were not terminal. The prognoses were that the people were suffering from grievous and irremediable conditions, and the court has defined what grievous and irremediable means. I will read from, for instance, an April 1 decision from British Columbia wherein the court concluded that, with respect to the second criterion:
A grievous medical condition "greatly or enormously interferes with the quality of that person's life and is in the range of critical, life-threatening, or terminal'', while an irremediable medical condition "is permanent and irreversible.''
In other words, I think we already have, from Canadian jurisprudence, an interpretation of how the courts have implemented Carter. In my opinion, it is in sync with what you've stated in your brief, that Carter is not limited to terminally ill people.
The Chair: Is that a question?
Senator Joyal: How did you share that interpretation of Carter with the other provinces?
Ms. Taylor: I'm not quite sure I understand the question.
The Chair: Perhaps you and the senator can get together, or he'll have an opportunity in the second round to pursue it further.
Senator Plett: Thank you. I have one question for Ms. Taylor and then one for both of you. First of all, Ms. Taylor, let me pass on my condolences and best wishes.
In your address to us, you talked about patients. I'll repeat it, quickly; you said: "They're awake, they interact, and they have ALS or MS or severe COPD, progressive diseases that rob them of the ability to breathe on their own. From time to time some of those patients make the decision to have a ventilator disconnected. It's known as withdrawal of care. This is done after discussion with their families and medical team, and they die within hours.''
Would you not agree, Ms. Taylor, that there is a vast difference between disconnecting machinery and letting nature take its course and giving a person a needle or a pill to end their life? I'm not asking you for an opinion of which is better. But is disconnecting something and letting nature take its course versus giving someone a needle to end their lives like comparing apples and oranges?
Ms. Taylor: What is the intention when the patient asks for the ventilator to be disconnected? What does the patient want? The patient wants to die. The patient had the choice, when the mechanical ventilator was put in, to say, "I don't want that now.'' But they wanted to give it a shot. They've had quality of life, some of them. They say, "I've had a good run, but things are deteriorating, and now I want it to end.''
My husband died at home with a needle in his arm delivering him a constant dose of Midazolam, which kept him in a coma without hydration and food. In essence, he starved and dehydrated himself but didn't know it because we put him in a coma, which is the kindest thing you can do for someone in his situation. But make no mistake that what killed him was the needle in the arm delivering the coma so that he wouldn't feel hungry or thirsty. I do not see the difference. All they did was make him suffer longer.
Senator Plett: I won't debate that as others have; I'll leave it at that.
Senator White addressed the situation of nurse practitioners. Ms. Gibson and Ms. Taylor, I want to read two things to you here. I think you indicated — correct me if I'm wrong — one of the reasons you didn't see an issue with nurse practitioners was the logistical reasons why you may not be able to have a physician present. I will quote the Canadian Nurses Association:
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, there would be policies and practices in place to bring in a substitute provider to provide that care.
Before you answer, I want to read recommendation number 22 from your own report of November 30, 2015. You recommend: "Two physicians must assess the patient to ensure that all criteria are met.''
Have you changed your opinion since this final report? How do you address the nurses association's assertion that there isn't an emergency here, and that you can wait a day or two or three for a doctor to come in and evaluate the situation?
Ms. Gibson: Thank you, senator, for the question. I'll certainly find the page reference for you in the report. We were still operating under the assumption that the legislation would apply only to physicians. We had recommended that there be exemptions for other members of the inter-professional team, including nurse practitioners and nurses. There's a line in the report that says that if there is such a change in legislation, then every reference to physician also could be substituted for nurse practitioner.
So we actually didn't change our minds. We were just recognizing the limitations. If the legislation was going to focus on physicians only, then it would be physicians, but we were actually advocating for an expansion to nurse practitioners, partly to address the access issues but also to recognize the scope of practice of another advanced practitioner within our health system who is a key contact for patients. In many cases, if my nurse practitioner is the one I have a long-standing relationship with, I might seek to sustain that relationship throughout the dying process or the decision making I might have about assisted death. I would argue we ought to support.
Senator Lankin: Thank you very much. Ms. Taylor, I had the honour of knowing your husband. I respect him, his commitment to public health, and his leadership during the SARS crisis. He contributed to the debate on this legislation. I thank him for all of that.
Ms. Gibson, you made reference to the request from some people about prior review. We've heard from physician regulators that this is a medical and not a legal matter and we shouldn't have the judiciary as a stop along the way. It was a very compelling case that you quoted from with respect to A.B.
Yesterday, I had the chance to speak with representatives from the Association of Community Living who argued that some form of prior review, in the form of a specialized consent and capacity tribunal, would be an important stop along the way in the safeguards. I'd like to hear your opinion on that.
Secondly, is that still an avenue open to someone who thinks an individual is being coerced? Could they challenge the capacity to be making this decision and take that forward if they thought a family member, legal counsel or someone else was coercing an individual? Could you talk about that?
Ms. Gibson: Thank you, senator. Excellent question. When I was looking at Bill C-14, it reinforced for me how different this particular scenario is compared to any other end-of-life decision. The number of safeguards that are enumerated in the bill far departs from regular health care practices in other end-of-life situations. That departure is important. It provides levels of safeguards, transparency and checks and balances which I believe are sufficient.
An additional layer starts to tip the balance towards creating additional burden on patients and families, also on health care providers, quite honestly. A great deal of work goes into developing the affidavits. Anybody who has to go before the Consent and Capacity Board, this is additional time, not just for patients and families, but also for health care providers. It starts to move the needle towards creating safeguards as burdens in a way that could be counterproductive.
I am sympathetic, though, to some of the concerns raised by organizations such as the Association of Community Living about some of the social vulnerabilities of some Canadians and how a structure that involves a judicial review might actually be the way to catch those. It is one option, but I think it's a much more intrusive option. We can address some of the social issues in other ways which are much more consistent with good practice. For example, we've heard the need for better social vulnerability assessments training for health professionals. That's critical. That's going to benefit everyone, not just those who are socially vulnerable.
One of the testimonies I heard last week from Professor Bourassa from Manitoba was talking about culturally safe care and reframing that. That's where the longer-term, most impactful opportunities are.
My final comment concerns the conversation about protection of vulnerable populations. It seems to operate with the presumption of lack of capacity and that they must then defend their capacity to be able to make decisions. That does a disservice to the individual and can potentially reinforce some of those social conditions which erode their capacity to be full citizens.
[Translation]
Senator Boisvenu: Thank you once again for your answers. It appears from Senator Joyal's question that you were consulted by two consultation groups: a group of professionals; and a group composed of practitioners, physicians, and people from the medical field, like you.
Briefly, would you say that this consultation enabled you to make your views known? And do you feel that this bill's philosophy reflects the opinions or comments that you expressed?
[English]
Ms. Gibson: Could you rephrase that for me, please, sir?
[Translation]
Senator Boisvenu: You took part in the consultations concerning the bill. As part of that participation, did you have the opportunity to make your views known? And separately from that, do you feel that this bill incorporates the comments and suggestions that you've proposed?
[English]
Ms. Taylor: We heard from a lot of the same stakeholders as you, but we were a less formal configuration. I do feel there was adequate back and forth and questions. Minds were changed; sometimes not, but sometimes we made headway. We would have loved more time, but we were working under a deadline as well, as we all are. I do agree with Jennifer. I came out sort of slamming the bill, but there is much that it does get right. Did I think we would be here three years ago? No. So I'm grateful for that.
Yes, a lot of the spirit of what we heard is in the bill. That doesn't mean that I'm not looking to you to make a couple of key changes.
Ms. Gibson: I would agree. In many ways what I see in the bill is as close as we can probably get right now to a proper balancing of federal versus provincial-territorial jurisdiction. There is a desire to cram more into this bill than can be reasonably included in a Criminal Code amendment. If we had been talking about a national bill for end-of-life care across the country, we might have been able to see a number of the elements related to some of the health care and social care considerations raised by witnesses.
I'm most encouraged by seeing the adoption of nurse practitioners playing a role, and certainly about the safeguards that I've identified. I would like to underscore the value of some of the non-legislative commitment to linking this actively and proactively. I'd like to see more detail about what the plans are to see how the health accord conversations can continue.
One of the concerns our group had, certainly I know other tables had as well, is we want to avoid a patchwork. That will require some leadership from the federal government to facilitate that. There is certainly awareness amongst many of the ministries and regulatory bodies across the country to begin to do that. That will be a lot of work, but that's the place to do it, rather than in this bill.
Senator Joyal: You suggested removing the word "incurable'' from the bill. From a practitioner point of view, why do you suggest that? Explain it from the basis of your experience.
Ms. Taylor: I have a lot of patients. I work in Toronto East General Hospital. It has an interesting patient population. Many of them are diabetic with lots of co-morbidities, meaning lots of different health problems all together. If you have diabetes and you don't take care of your blood sugar, it can lead to terrible complications, such as blindness. I see a lot of people whose blood flow to their periphery, toes and fingers, is so poor that they have dead toes and fingers. Is that treatable? Yes, with amputation. A lot of my patients say, "I don't want to amputate. I'll take my chances.'' We tell them you're going to die of an infection if you don't get this amputation. "I'm willing to take that chance.''
If I were the physician and a patient said, "My toes are black and they want to amputate the whole leg. I don't want to. I'd rather have an assisted death, to be honest.'' If I had the word "incurable'' in my mind, I might say, "I'm sorry, but this is curable if you get the amputation. I know you have congestive heart failure too and all these other things, but this is curable. If that's really your big reason, it's curable.'' It will be interpreted differently by different practitioners. That's just one small example.
Also, cancer. My husband was inoperable because of where it was. But what if a patient had an operable brain tumour and they were told three more rounds of chemo and they might have four more months of life. At what point does the patient get to say, "That's enough; I don't want to try anymore?'' I'm worried about that.
The Chair: Thank you both for being here today and for your assistance in the committee's consideration of Bill C- 14. It's much appreciated.
For our second hour, we have, from the Canadian Psychiatric Association, Dr. Sonu Gaind, President, joining us by video conference from Hong Kong; from the Centre for Addiction and Mental Health, Dr. Tarek Rajji, Chief of Geriatric Psychiatry; and Dr. Padraic Carr and Dr. Linda Ganzini, by video conference from Portland, Oregon.
Thank you all for being here. Perhaps, Dr. Gaind, I could ask you and then Dr. Ganzini to proceed with opening statements.
Dr. K. Sonu Gaind, President, Canadian Psychiatric Association: Good morning. The Canadian Psychiatric Association is pleased to have this opportunity to present to the Senate on the issue of medical assistance in dying. My name is Karandeep Sonu Gaind, and I'm the President of the Canadian Psychiatric Association. The CPA supports Bill C-14's proposal to further study the issue of MAID when mental illness is the sole underlying medical condition, without prejudgment of the outcome.
There are unique issues when mental illness is present that were not considered in the Supreme Court of Canada v. Carter ruling. By affecting the brain, mental illness affects how a person thinks and feels, including how they feel about themselves and their place in the world. The very symptoms of mental illness may thus make individuals particularly vulnerable to be induced to end their life at a time of weakness.
Symptoms of mental illness can affect a person's emotional resilience, making even normal life stresses seem unbearable, and can lead to cognitive distortions, including negative views of oneself and the future. Thus, symptoms of mental illness not only lead to suffering but may also independently affect the person's decision-making process regarding their will to live or die.
Remediability is another key issue that has different implications for mental illness compared to other medical illnesses. In mental illness, remediability cannot be looked at only in biomedical terms of symptom improvement. Psychosocial factors such as isolation and loneliness, poverty, housing and underemployment or role in society are all things that impact suffering from mental illness and need to be considered as part of attempted remediation. The concept of when a mental illness should be considered irremediable is very different and not something the profession has previously needed to define. As the CPA has pointed out to Minister Wilson-Raybould and Minister Philpott, there is no established standard of care in Canada, or as far as the CPA is aware of in the world, for defining the threshold when typical psychiatric conditions should be considered irremediable.
None of this is to dispute the fact that mental illness can lead to significant suffering. However, combined with challenges of lack of access, this lack of standards alone would have troubling implications for MAID if the sole criteria of mental illness were allowed for in the pending June 2016 framework. A recent review of data from the Netherlands supports these concerns, as it showed the majority of cases of physician-assisted death for mental illness did have unresolved psychosocial suffering, such as social isolation.
Consistent with the further study called for in draft Bill C-14, the CPA has struck a time-limited task force to better understand these issues.
There are other issues important in ensuring consistent national standards, including the appropriate mix of providers doing sequential assessments, and length of waiting period when mental illness is involved. But I will close by addressing some common misconceptions regarding mental illness in MAID discussions.
First, the term "treatment-resistant depression,'' or TRD, should not be misunderstood as meaning irremediable. TRD is a research and clinical concept meant to guide potential treatment options when biomedical symptoms have not been adequately reduced following two attempted biomedical treatment courses. It would be improper, even dangerous, to misapply the concept of TRD as meaning "irremediable'' for MAID discussions.
Second, while CPA and others have advocated for years to eliminate stigma and discrimination against those with mental illness, it is important to realize it is not discriminatory to consider the particular nuances of mental illness in MAID discussions. "Equity'' does not mean everything is the same; it means treating things fairly and impartially. Failure to consider the particular circumstances of mental illness, as it could impact MAID processes, would itself be stigmatizing or discriminatory, as it would fail to acknowledge the realities of mental illness on people and their lives.
I want to again thank the committee for your thoughtful consideration of these issues, and I am happy to answer any questions you may have.
The Chair: Thank you very much. Dr. Ganzini, please go ahead.
Dr. Linda Ganzini, as an individual: Thank you. I am a professor of psychiatry and medicine at Oregon Health & Science University. I need to tell you that I also work for the U.S. Department of Veterans Affairs, and nothing that I say reflects the views of the U.S. government.
Since the mid-1990s, I have done research on Oregon's Death With Dignity Act, including surveys of health care professionals, physicians, hospice nurses, hospice social workers and hospice chaplains about their views and experiences with Oregon's law; studies of patient populations about their preferences for physician aid in dying, including patients with cancer and ALS; and more recently studies of family members and patients in the process of requesting physician aid in dying. In addition to that, I've had about 50 clinical and research interviews with patients who have made explicit requests for physician-assisted death.
I'm happy to answer questions regarding those studies. I am aware that Canada's law is evolving and in flux. I'm not entirely up to date about the current considerations, but again I'm happy to share my experiences.
The Chair: Thank you very much. Dr. Rajji, you may go ahead.
Dr. Tarek Rajji, Chief of Geriatric Psychiatry, Centre for Addiction and Mental Health: Members of the Standing Senate Committee on Legal and Constitutional Affairs, thank you for the opportunity to appear before you today to share our perspectives on Bill C-14.
CAMH is one of Canada's largest mental health and addictions academic health sciences centres. We combine clinical care, research and education to transform the lives of people affected by mental illness or addiction. We have over 500 in-patient beds, 3,000 staff, over 300 physicians and over 100 scientists. We treat over 30,000 patients each year.
Medical assistance in dying, or MAID, as it relates to mental illness is an extremely complex topic. CAMH appreciates that the government has recognized this complexity in Bill C-14 and provided more time to carefully consider the issues related to MAID and mental illness where it is the sole medical condition.
CAMH knows that mental illness can cause an individual to experience intolerable psychological suffering, but it is our belief that with recovery-based approaches for care, the vast majority of people will recover. As government moves ahead with further study on mental illness and MAID, much thoughtful analysis and consultation will be needed to determine if, and under what circumstances, mental illness should ever be considered irremediable.
Thought must also be given to how to acknowledge and support health professionals who experience emotional stress due to addressing MAID in their practices. CAMH offers our expertise when the government is ready to review this issue.
Today, I want to discuss those individuals who meet Bill C-14's criteria for a grievous and irremediable medical condition and who also have a mental illness. Such individuals may appear eligible for MAID, but it will be imperative to determine whether it is the mental illness that is underlying their request and whether the individual truly has the capacity to consent to MAID.
Individuals with mental illness can experience distorted perceptions due to the illness and its consequences. When a person is experiencing an acute episode of their illness, such as a major depressive episode, an acute psychotic episode or a manic episode, it is not uncommon for them to have severely distorted beliefs about themselves, the world and their future. Sometimes, this sense of helplessness, worthlessness and hopelessness continues even when the symptoms of the mental illness are better controlled.
These distortions raise questions about the capacity to make a MAID request during both the acute and less acute phases of the illness. Recovery-based treatment can change an individual's distorted beliefs, potentially impacting their decision to request MAID.
I want also to share a clinical example to illustrate these issues: a 65-year-old woman with a long history of chronic schizophrenia, whose onset occurred when she was 18 years old. Her illness is relatively well controlled with appropriate medications and psychosocial treatments. However, she maintained fixed beliefs that she has been visited by aliens from another planet and that they maintain a supervisory role over her life. Despite the persistence of these beliefs, she has been able to maintain a certain level of satisfying relationships with her family and co-residents.
In the past, when her symptoms were not controlled, she would hear voices from these aliens telling her that she is causing cancer and diseases to people around her. At the age of 65, she developed lung cancer herself. Although she is not experiencing the voices, she has the belief now that she became ill with cancer because of all the people she caused cancer to in the past; thus, to repent, she is refusing any treatments for her cancer.
A clinical dilemma around capacity would arise, then, if she asks to receive MAID to relieve herself from the pain of cancer. Is capacity to ask for MAID distinct from her capacity to refuse or accept treatment for cancer?
Determining whether a request for MAID is driven by an underlying mental illness will be difficult, given that MAID is not simply another health care decision. Education for mental health professionals and other professionals will be required.
Therefore, CAMH recommends that Bill C-14 include in proposed section 241.3 enhanced safeguards for determining capacity in people who have a co-occurring mental illness. These safeguards might include standardized procedures with a clear threshold, and examination by at least one psychiatrist and/or an expert panel to review such requests. CAMH would be happy to work with the government to develop these safeguards.
Committee members, thank you again for the opportunity to speak with you today. MAID and mental illness are very complex topics, and the government's approach to date must be commended. I would be happy to take any questions.
The Chair: Thank you. Dr. Carr, we go to you now.
Dr. Padraic E. Carr, as an individual: Thank you, Mr. Chairman, for the invitation to speak with the committee today.
I'm a general adult psychiatrist practising in Edmonton, Alberta. I currently sit as President Elect of the Alberta Medical Association and am the Immediate Past President of the Canadian Psychiatric Association. Today, however, I'm speaking as an individual practitioner.
Medical assistance in dying has certainly engendered debate. The difficulty obviously lies in striking a balance between patient autonomy and the need to protect the vulnerable at a time of weakness. This is especially true regarding mental illness.
Mental illnesses can be unique from physical illnesses in many respects; for example, suicidal thoughts can arise directly from psychiatric disorders. Mental illnesses can affect capacity and judgment, both key criteria for competence. Symptoms and their intensity can fluctuate over a period of many months, thus mandating serial assessments.
On a related note, patients can understandably be reluctant to disclose sensitive information. This can cause delays in assessing the entire diagnostic picture in its social context. Symptoms themselves are influenced by patients' underlying personality traits, coping skills and social situations. Patients who feel supported in the community may have quite different perspectives on MAID than those who feel they are a burden or alone.
In addition, some psychiatric treatments can take many months to reach a full effect, and often multiple treatment trials are required to find the correct fit. The illnesses themselves are rarely fatal or terminal, but there are many treatments available that can alleviate or mitigate the symptoms. In this context, Bill C-14 appears a reasonable and tempered initial legislative step to address the complexities of MAID and mental illness.
First, a consistent approach is required across Canada. A patchwork of legislation would be difficult for both patients and professionals to manage and would create inequities in the system. As Bill C-14's preamble states, the personal convictions of health care providers need to be respected as well.
The term "irremediable'' also needs further clarification. Its meaning could be construed as untreatable, incurable or terminal. Certainly, most mental illnesses would not meet the test of untreatable or terminal, but most could be defined as incurable. This would have been an unacceptable definition if left unqualified, putting the vulnerable at risk. The qualifiers of "irreversible decline'' and "reasonably foreseeable natural death'' are important safeguards for psychiatric patients.
A second medical opinion is also necessary and should incorporate an adequate wait time between assessments to ensure that interviews are not unduly influenced by immediate circumstances. Further, a waiting period of 15 days seems inadequate if mental illness is present or suspected. Psychiatric assessments and treatments can take considerable time; and all variables must be carefully delineated to determine a patient's capacity.
It's also important that consent and capacity remain until MAID is administered. Otherwise, an important safeguard is lost if a patient is unable to withdraw the request. Creating an advance directive is no guarantee that a patient would still consent to MAID when the time actually comes. Patient autonomy is also at risk if consent cannot be withdrawn because an element of capacity has changed.
As Bill C-14 suggests, further studies of mental illness as the sole underlying medical condition for MAID are required before this concept is considered or applied. The studies should include an examination of the availability of mental health and palliative care resources in the community. A lack of such services may contribute to requests for MAID. Perhaps more than any other group, those suffering from mental illness are at risk of being induced to commit suicide at a time of weakness.
As it stands now, Bill C-14 would likely preclude the application of MAID where mental illness is the sole criteria. This is a reasonable approach at present, given the multitude of confounding influences on the issue. More consultation is required with professions and with the public to ensure that those suffering from mental illness are adequately protected.
I'd be pleased to answer any questions you may have.
The Chair: We'll begin questions with the deputy chair.
Senator Jaffer: Since we started studying this bill, one thing has really bothered me. I agree with the government that we have to take the time to work on this issue and to hear about how to set up a system that is protective of the most vulnerable. All my life I've worked on equality issues. Equality, as Dr. Gaind said, is not treating equally but treating people differently because people's needs are different. My challenge is the person who meets the criteria of grievous and irremediable incurable illness that's irreversible, and all those things, but they can't give informed consent. Dr. Rajji, you spoke about that.
I'm troubled by this. How do you set it up so that that person can also get what the rest of Canadians can get, the type of service? It's not fair to treat people differently in our great country. I'm troubled by this. You are the experts. What can you say?
Dr. Rajji: I agree with you. This is the complexity. The challenge that you've probably heard from all of us, at least the three of us, is that it's hard for us to see one mental illness as irremediable, not just the issue of capacity. To me, there is also the issue of difficulty in predicting the course of mental illness.
To give an example, even individuals with severe mental illness like schizophrenia, up to 30 per cent of them in long- term studies remit later in life and recover from schizophrenia. The challenge in our field is that we don't yet have enough knowledge to predict who will be on a trajectory of reversibility or recovery. We use a recovery-based approach to live with mental illness in addition to treating the somatic symptoms that you've heard about.
Dr. Carr: Your question was really around a system for informed consent. To be honest, I don't think that will be as problematic as assessing the capacity to agree to that informed consent. That's where the difficulty lies.
Senator Jaffer: Explain what you mean by "capacity.''
Dr. Carr: There could be a procedure set out in all the provinces, perhaps even nationally, that informed consent should include certain parameters. That's easy to work out. The difficulty is assessing the individual. They have been informed. But do they understand? That's what "capacity'' means. It's the ability to grasp the information, manipulate it rationally, not be influenced by delusions, understand the consequences of the decision and then clearly consent. The difficulty will be in those individual assessments, which have to be done between the patient and whoever is assessing that capacity for consent. That will be the more difficult issue.
Dr. Gaind: I'll comment on two of the points you made, one being capacity. If I understood your question properly, you're asking about the challenging issue of how we can know what a person actually wants if they lack capacity? You're saying you're troubled by the potential for people not to have the same ability to exercise this option if they are deemed incapable.
Senator Jaffer: Exactly.
Dr. Gaind: That is a very challenging issue. If we do not know the will of the person in a state of capacity or competence, then who has the right to make that decision for them? Part of the challenge here is that we know that when decisions like this are made, multiple things can influence people or caregivers. I don't have an answer for you about how we wrestle with that. If it's not the patient's competent and fully capable decision, whose decision is it or should it be?
The other piece that you mentioned was if all other conditions are met, including the irremediable piece. I'll just go back and emphasize what others have commented on as well. In terms of mental illness, the reality is that we don't really know what the definition of "irremediability'' should be. Part of the reason, as I alluded to, is that we look at trying to alleviate biomedical symptoms, but for mental illness, there are a bunch of psychosocial factors that we also try to improve. At what point do we say that we can no longer improve anything when there are still psychosocial factors that could potentially be improved? It's not just about the biomedical symptoms.
The other thing I'd point out is that while we make a similar determination in some ways for capacity where we weigh a number of things and then decide does this person have capacity for this decision or not, we make an on-or-off dichotomous decision. With irremediability, in addition to the fact that we don't have standards of what that means for mental illness, we are also doing a future predictive assessment, whereas capacity is a point in time assessment in the present. It opens up all sorts of uncertainty and unpredictability as a result.
Senator White: I'm going to refer to the proposed legislation, and in particular regulations the Minister of Health may make regarding the gathering of intelligence and information. We have a piece of legislation proposed that will bring us five years down the road for review. We are expected to depend on a minister who may allow us to actually have the information to do a substantial review.
Having looked at the legislation, do you see the need for more clarity around the gathering of information so that that review can actually be substantial rather than, in my argument, superficial?
Dr. Carr: The preamble said further study is required. It really didn't delineate what the parameters for that study will be. So obviously yes, it will have to be further clarified.
Dr. Rajji: I agree. A lot of the challenges we are presenting to you today are because of the need for further clarification and further definitions which do not exist. A clear process would be very helpful, and we're happy to engage in that.
Dr. Gaind: I echo those comments. We look forward to seeing the process, which still needs to be defined.
As for the CPA internal process, we have struck our task force to look at these issues. We have actually already met and are now away awaiting the outcome of the final legislation before deciding how to proceed further.
In the past few days, I've spoken with my counterparts from the U.K., Australia and New Zealand. The Australian and New Zealand psychiatrists came out with a position statement in February of this year. They echo our concerns about "irremediable.'' They say that the RANZCP also considers that unrelievable psychiatric suffering is rare and that ensuring a person with mental illness has capacity in this context may pose significant challenges.
We're not the only national association struggling with this. The entire profession worldwide needs to study this and figure out these issues together.
Senator Baker: Thank you. I'm wondering, Dr. Ganzini, you have been listening to the questions and answers. Do you have any comment to make concerning the questions and answers to date?
Dr. Ganzini: I have struggled with many of these issues. In the United States and Canada, I think we have a general agreement about what capacity is, the ability to make a decision, to weigh the risks and benefits around alternatives, to appreciate the information and apply it to one's own situation, to not be impacted by delusions and hallucinations. In my experience with patients requesting physician aid in dying, I don't minimize this, but there are really much more complex things patients are presented with in medicine than this decision.
The bigger issues are should there be a higher level of capacity so that a mental illness impacting the decision excludes people? Should there be an even higher level where we look back on their lives to see if these preferences are authentic with a series of lifelong values? Physician aid in dying is different than the withholding and withdrawing of medical treatment; therefore, it is fair to have a higher level of capacity and a different process.
Even with that, I don't think that just having capacity is enough for practices to be allowed. With patients whose only illness is a mental illness resulting in their wanting a hastened death, my personal experience in caring for many suicidal patients is that they may have capacity for that decision, but I still work very hard to help them find alternatives to live. Even after long periods of wanting death, they may recover and die a natural death. Their family members are quite grateful I've continued to work so hard with them.
The Oregon law is a law in which death is foreseen, and physicians participate to find a good death. I might be working with patients who would not have a terminal illness but pursue physician aid in dying. That would make my work a lot more difficult. I wouldn't support that. I don't have data from Oregon to help define that; that's just my opinion.
Senator McIntyre: Thank you all for your presentations. As you have all indicated, the biggest challenge is to strike a balance between a patient's autonomy and the need to protect the vulnerable.
That said, Dr. Carr, in your presentation and in your brief I note that you have some concerns with Bill C-14, one of which has to do with the waiting period. In perusing the bill, I note it requires a 15-day waiting period between when the request for medical assistance in dying is signed and the day on which medical assistance in dying is provided. However, it permits medical personnel to use their discretion where a loss of capacity to provide informed consent is imminent.
In your experience, is it possible to assess whether a loss of capacity is imminent? Does the discretionary power given to the medical personnel apply to individuals with dementia or only those who are likely to become unconscious?
Dr. Carr: Can you repeat that? I'm not quite clear what scenario you're describing.
Senator McIntyre: Would the discretionary power given to the medical personnel apply to patients with dementia or to those also likely to become unconscious?
Dr. Carr: Discretionary power for assessment?
Senator McIntyre: Discretionary power regarding the 15-day waiting period.
Dr. Carr: I think I understand your question. It is difficult to assess or determine an immediate loss of capacity. Certainly with psychiatric illnesses, capacity can wax and wane. At times a patient loses capacity to make decisions, but that can recover with some conditions as well. So it's very difficult to accurately and precisely predict when a loss of capacity will occur. Certainly with disorders such as dementia, that is usually a gradual progression. There are some types where it's a more rapid advance, but that can be very difficult to predict.
I'm going to have to get you to repeat that second part. I have difficulty understanding what you're getting at.
Senator McIntyre: The question is basically very simple. It has to do with the 15-day waiting period. Should it be five days, 10 days or 15 days? The bill calls for 15 days. Discretion is given to medical personnel. So the question has to do with this discretion given to the personnel.
Dr. Carr: There has to be some discretionary role in terms of the medical person who is deciding whether or not the time for assessment is reasonable. There are some conditions where a patient has a very fluctuant course. That is known ahead of time, so a health care provider will have to say, "Yes, we should wait longer in deciding.'' For some people, it's clearer that this has been their wish for a long time or that their condition is unlikely to change. There has to be some discretion.
Fifteen days is the minimum for the legislation. It is probably not going to be adequate for most psychiatric patients. Most of our treatments are going to require between six and eight weeks.
If you're talking about a 15-day waiting period, you're not going to adequately assess if a new treatment is efficacious or not. There's going to have to be some discretion; I'm just saying that, for most mental illnesses, 15 days is probably not going to be enough.
Senator McIntyre: Some discretion and some flexibility?
Dr. Carr: Correct. Yes.
Senator McIntyre: Thank you.
Senator Batters: Thank you very much to all of you for being here. This is a topic that I have worked long and hard on for the last several years. Thank you for everything you do for people with mental illness in Canada.
I want to start out with Dr. Rajji. What I've been saying on this particular issue is that mental illness is treatable. It's not terminal, and it involves more complex decision making. On your point about the enhanced safeguards that are needed, to determine safeguards you have called for an examination by at least one psychiatrist. Right now, this government's bill has an examination only necessary by, potentially, two nurse practitioners and not even a physician involved, let alone a psychiatrist. I'm wondering if you could give us more details as to the enhanced safeguards that you think would be necessary to include to really protect people with mental illness.
Dr. Rajji: Thank you for the question. I think, for individuals with the co-occurring mental illness, who are requesting MAID for a medical condition, we are recommending a psychiatric assessment by a psychiatrist or by a nurse practitioner who is an expert in psychiatric assessment. That could be the case, but we don't have many in Canada.
Senator Batters: There's no such requirement here. It's simply a nurse practitioner.
Dr. Rajji: An assessment — that's our recommendation — by a psychiatrist, specifically, for the co-occurring illness, would be one of the safeguards.
Senator Batters: Right. Thank you. Also, as to what has been spoken about the 15-day waiting period, I think, actually, as of last night or today, the House of Commons committee has now reduced the waiting period down to 10 days, and it can be collapsed down to zero, as we've heard from certain medical witnesses as well. It seems to be going in the wrong direction.
Dr. Carr, if you could tell us, there are many types of medications used to treat mental illness that can have suicidal thoughts as a side effect. Can you comment on that? Also, dealing with the waiting period, particularly given that it's now 10 days, to me, it seems very inadequate, given the lengthy waiting periods that we see across Canada, unfortunately, to even see a psychiatrist when someone is suffering with mental illness.
Dr. Carr: To answer your second question first, certainly, in terms of the waiting period, as I mentioned, I think 15 days is probably inadequate. Most treatments are going to take much longer than that. I think that needs to be taken into consideration when the further study is done on mental illnesses.
In terms of medications affecting a person's suicidal thoughts or even circumstances influencing suicidal thoughts, there are many scenarios where outside factors can influence that, and that has to be carefully assessed. There are, certainly, psychiatric medications that have been associated with an increase in impulsivity and, potentially, related suicidal behaviours. Those require careful monitoring. There are other medications that are non-psychiatric that have that same side effect. That's something to consider as well.
It's really important to look at all of the factors involved in assessing, and that's going to take some time to do. I think it's very difficult, especially, to do that in a one-time assessment or a one-time assessment by two separate practitioners.
Senator Batters: Thank you. Dr. Gaind, I thought you provided some really important information about treatment-resistant depression. The definition of that would only require two types of treatment, of course. I'm wondering, from your substantial experience in this area, how common is it that a patient suffering from depression tries more than two types of treatment?
Dr. Gaind: It's not uncommon in challenging cases of depression. Even in those situations, what we will often find is partial symptom improvement but not full symptom improvement, or tolerability issues with a medication that requires trying more than one or two trials of medication.
The key point I wanted to make sure was made is that the entire concept of treatment resistance is really in a very different framework than the MAID framework. It's in the framework of, if we have gone through these courses of treatment, what does science show us or suggest to us that we should do next? It is not saying that if we have gone through these courses of treatment, it's the end of the road and there's nothing we can do next. This is why it was important to highlight that treatment-resistant mental illness, in the context of the literature and of our discussions clinically, is not at all the same as irremediability, and we would not want people to think that all of the cases of treatment resistance equate to irremediability because they do not.
[Translation]
Senator Dagenais: I would like to thank our witnesses. I have two questions. The first is for Dr. Carr. Instead of passing a hasty and incomplete law, and one that is even dangerous in certain respects, Dr. Carr, would it not be wiser to put this bill aside and start a serious national discussion on mental health?
I would like to share an experience with you. I'm a member of the Standing Senate Committee on Agriculture and Forestry. We studied premature bee mortality for six months. I am saying this as a kind of humorous exaggeration, but there's a point to it. The point is that we are being given six days to come up with a position on a bill about medical assistance in dying for human beings. I find this perplexing and would like to hear your comments on the subject.
[English]
Dr. Carr: Thank you for the question. Certainly, Bill C-14 asks for further study, and as I said in my statement, I'm totally in agreement with that. I think to include mental illness at this stage would be premature, and it really does require more study to make sure the safeguards are in place.
[Translation]
Senator Dagenais: My next question is for Dr. Ganzini. I would like to go back to the practice in Oregon. Now that the Oregon statute has been implemented, has the practice resulted in the refusal of medical assistance in dying to individuals diagnosed with mental disorders? If so, could you tell us how this has transpired?
[English]
Dr. Ganzini: A requirement for being eligible in Oregon is having a life expectancy of less than six months. The question then becomes, within that context, are there people with mental illnesses, particularly depression, where it's impacting the decision and where, instead of getting a legal prescription, they should get further depression treatment? This would be very different than the context of somebody who had a life expectancy of, potentially, decades.
We know that a small number of patients get psychiatric evaluations who go on and are eligible for the law. We don't know the percentage of patients who are declined overall because of mental illness. It certainly, though, does occur; we just don't know the proportion.
We also know that even though the Oregon law requires a psychiatrist or psychological evaluation if there's concern about depression impacting the mental illness, a small number of patients with clinically significant depression access legal prescriptions without ever seeing a mental health professional. It's unknown if treatment for depression would have changed their minds.
Overall, it can be a barrier, but the more important thing to know is that, really, 75 per cent to 80 per cent of patients who make requests in Oregon have no measurable depression at all. That's one of the reasons why, in the Oregon context, I don't really support mandatory psychiatric evaluations. I don't think it's a good use of resources. It can be demeaning for the patients. These are a group of patients who have placed a high value on control and dignity. In our studies, patients with depression who access legal prescriptions all would have been picked up with a simple screening measure for depression, like the PHQ-9. I've advocated for better screening among this group of patients before deciding who should be evaluated by mental health.
In addition, the other thing that's different in Oregon is that 90 per cent of the patients who die according to our Death with Dignity Act are enrolled in hospice. All hospice care requires working with a clinical social worker, and frankly, they have a great deal of mental health expertise with patients at the end of life, and probably more mental health expertise than most psychiatrists.
Back in the mid-1990s, when we first started these studies, we did a survey of every psychiatrist in Oregon, and only a very small percentage had taken care of a patient who was terminally ill in the previous year.
[Translation]
Senator Boisvenu: I have many concerns about the way the law is applied in the mental health field. I worked in that field for a few years, and it's a very complex one, in which the science still hasn't developed all that much. Psychiatry tends to be an inexact science, whereas medicine is more of an exact one.
Dr. Carr, in your area of practice, have you ever dealt with patients other than those with schizophrenia or chronic dementia — and I mention the latter given that we know chronic dementia tends more toward death than toward a cure — who were suffering from a psychiatric condition such as drug addiction, sexual offending or schizophrenia, who did not foresee finding an acceptable restoration of balance and who saw death as a release from this psychiatric or psychological suffering? What experience have you had in that area? Have you encountered many people who wanted to end their lives because of psychiatric problems?
[English]
Dr. Carr: Thank you. Certainly, a common presenting symptom with psychiatric patients is suicidal ideation, and that's common to many diagnoses. That can happen with depression, and it's a risk with substance abuse and schizophrenia, as you mentioned. It's estimated that 50 per cent of people with schizophrenia may attempt suicide at some point in their lives. The numbers are very high.
In my personal practice, I have faced many patients complaining of suicidal thoughts, or who expressed suicidal ideation. It's a difficult subject. It's difficult to treat these patients. It's difficult for the patients, for their families and for the caregivers.
It's fair to say I have had patients in my practice who have committed suicide. But in the vast majority of people who have presented with suicidal ideation, those thoughts have eventually disappeared with adequate treatment. That speaks to the need to have adequate psychiatric and mental health resources in the community so these people can be treated and they look to other things, so that medically assisted death isn't the first option they turn to.
Senator Lankin: I am really developing an appreciation for the work that is yet to be done with respect to people suffering from mental illness. I think the work that CPA and CAMH do, and the work you're offering to do on irremediability and those types of concepts, is very important.
Dr. Carr, in a couple of your points, you commented on provisions of the bill being good in your perspective because of the additional protection they would present for people with mental illness. On the flip side of that, there are some who would raise concern about those provisions because they apply to everybody.
If I may be specific, I'd like to raise two comments that you made in particular.
You talked about reasonable and foreseeable death. That phrase is causing people significant concern in terms of someone — absent of mental illness — whose physical condition is continuing to decline and whose illness is irremediable and causing intolerable pain, and where there's no further treatment that meets the needs of the individual.
If we change that, it would present a problem to you with respect to people with mental illness, but I suggest — and I'd like your comment on this — that it really is about us building the right protections for people with mental illness, not having a blanket phrase like that that applies to everyone.
The second thing you said was with respect to advanced directives. I think, here, about someone who has dementia or a brain tumour. They may go through the whole process of setting out an advance directive and appointing substitute decision makers and put in place all of the mechanisms to ensure that when they were no longer able to reconfirm, someone is there to allow medically assisted dying to take place.
Your comment was that the person with mental illness may change their mind, and we've heard that with respect to advance directives in general. A person may change their mind with respect to a do-not-resuscitate order as well, but our system has been set up with the right safeguards up front and the right mechanisms to support things like substitute decision making.
Could you distinguish for me safeguards for people with mental illness and the general provisions of the bill?
Dr. Carr: You touch on two points, and both, in summary, highlight the need for study with regard to mental illness. That's why we need to proceed cautiously and make sure we have the right mix of regulations.
Regarding reasonably foreseeable death, there are certainly many treatments available in terms of psychiatry. A patient may view their situation as hopeless and that they can't go on, but most of our illnesses in psychiatry are not terminal and not fatal. Many treatments are available to treat those illnesses.
Dr. Gaind talked about treatment resistance and two trials of medication being labelled as treatment-resistant. That doesn't mean that a third or a sixth or even a tenth treatment is not going to work. It may.
If you have the safeguard of reasonably foreseeable death present, it allows for those other treatments to be tried and utilized to hopefully improve the patient's life and their outlook.
In terms of advance directives, it's complicated. There are many cases where, in terms of assessing a patient for whether they want to live and what they want to have happen at the end of life, people do change their minds. Very often it's quite different to saying well in advance, "I wouldn't want to live with this or that circumstance.'' There have been many examples where people have encountered those circumstances, changed their mind and want to do something different.
We have to err on the side of caution in terms of protecting the patient. What happens if a patient says, "I don't want this to happen,'' and as things progress it appears that, perhaps, life is more tolerable than what they thought it would be? What happens if they do express a joy in living, even if their condition has changed, and don't want medically assisted death to occur?
In their ability to have a capacity, what if some element of that capacity changes and it becomes quite clear that the patient probably doesn't want medically assisted death anymore, but because they don't meet the criteria for capacity, you don't know whether to go ahead or stop? Patient autonomy is threatened that way as well, so you really have to err on the side of caution with your regulations to protect the vulnerable. If you have advance directives, I think it's very difficult in psychiatry, with that in place. At the present time, I think Bill C-14 strikes the right balance.
The Chair: We have a few minutes for a brief second round.
Senator Jaffer: We have very little time, so maybe you can give us something later. I see amendments have been made in the house and that something will be set up in 180 days. You all work with vulnerable people. What kind of process do you think should be set up to make sure we get the right message so that when we come to review it in five years we'll know we did this properly? What would you like to see?
Dr. Rajji: From my perspective, more consultations are needed among the different disciplines involved in caring for an individual with mental illness to come up with what we define as irremediable — is there something irremediable in mental illness — to assess the issue of capacity and the fluctuation in capacity as it relates to an acute episode versus the chronic nature of the illness when people are more likely to be capable, and to address issues of advance directives related to mental illness and dementia.
Senator Batters: Dr. Gaind, I want to give you a brief bit of time to give us more detail about the recent information that's come out of the Netherlands showing that they have some real concerns about their legislation, which allows psychological suffering as a sole basis to access physician-assisted suicide. They've seen recent developments that have caused them concern. Could you please give us more information about that?
Dr. Gaind: Certainly. I may not have all the exact numbers offhand, but it looked over a period of three or four years, I believe, when 66 cases were reviewed. Of those cases, the majority had loneliness and social isolation. The majority, in addition to other psychiatric diagnoses such as depression or others, also had diagnoses of personality disorders. A fairly significant number did not have an independent psychiatric assessment done, despite the fact that there are robust safeguards.
They had numerous medical assessments, but I believe it was either 12 per cent or approaching 20 per cent that did not have an independent psychiatric assessment done. There were also in the range of 10 per cent to 14 per cent that had discrepant consultant recommendations, meaning that at least one consultant thought the person should not have been considered for this, and they received it anyway. One of the cases, in fact, I believe didn't even meet the legal threshold at the end and is apparently being looked at.
Senator Batters: Thank you for that information.
Senator Joyal: Dr. Gaind, in your letter you mentioned that the CPA has struck a time-limited task force to better understand these issues. When you say "time limited,'' what is the time frame and what is the scope or the mandate of that task force?
Dr. Gaind: To some extent, the time frame will be something we respond to on what is required of us from the legislation that comes out and the non-legislative study time frames suggested by the government. Right now, we are ensuring that we have the right expertise on the committee and looking at consulting quite broadly on this. Defining some of these issues cannot be done just by medical professionals. We need ethicists and legal and lived experience as well.
In terms of the time frames, I can't tell you that because we will adjust it to what is required by the pending legislation.
Senator Joyal: You mentioned that the evaluation of the mental capacity is very complex. What kind of additional safeguards to the ones that are already listed in Bill C-14 are you thinking of?
Dr. Gaind: For capacity or remediability?
Senator Joyal: For capacity. It's the first criterion. The person has to be able to understand the impact of his or her decision.
Dr. Gaind: For capacity, when we presented at the external panel for legislative options back in November, I suppose it was, we actually did suggest that if mental illness is involved, you need to ensure that a properly trained person familiar with mental illness and mental health issues is part of that evaluative process. A psychiatrist, we did suggest at that time, needs to be involved in part of the capacity assessment when mental illness is present, largely because some of the cognitive changes can be quite subtle and they can be missed unless you are expert in the area.
The Chair: I thank all of our witnesses for being here today and assisting us in our deliberations. A special thank you to Dr. Gaind: I understand it's about 3 a.m. in Hong Kong, so that's true dedication to getting your association's message out to the community. We very much appreciate it.
Dr. Gaind: Thank you, and I look forward to waking up early.
The Chair: For our third panel today, we have with us Dr. Derryck Smith, Clinical Professor Emeritus with the Department of Psychiatry at the University of British Columbia, and he is joining us by video conference from Amsterdam. We also have Dr. Scott Kim, Adjunct Professor with the Department of Psychiatry at the University of Michigan. Dr. Kim is joining us by video conference from Washington, D.C. From the Mental Health Commission of Canada, we have Patrick Baillie, Psychologist with the Alberta Health Services.
Thank you all for being here.
Dr. Smith, let's lead off with your opening statement. You all have roughly five minutes. I can show a little latitude, but not much
Dr. Derryck Smith, as an individual: Thank you. I do appreciate the hard work the Senate is doing on this. I realize you're working long hours.
My view of this legislation is that it is attempting to narrow the ruling from the Carter decision in a number of important ways. In the first instance, it's purporting to add in the phraseology "natural death has become reasonably foreseeable,'' and the reason for adding this is to protect the vulnerable. There is no evidence from anywhere in the world that has similar schemes that the vulnerable are being taken advantage of, so I see no reason to do that, and it leaves a great ambiguity in the minds of medical practitioners. What does it mean that death has become "reasonably foreseeable''? For example, I can guarantee you that I will be dead in 50 years. Does that mean it's "reasonably foreseeable''? I don't think doctors like that ambiguity in the language.
The second point I want to make has to do with the exclusion of mental illness. Again, Carter does not mention mental illness, except to reference psychological suffering. As a psychiatrist, I have fought against stigma of mental illness my entire life, and excluding mental illness as some kind of weird and unusual thing — not a medical problem — really distresses me. There are a few individuals, and I want to stress only a few, who have a "grievous and irremediable'' psychiatric illness that causes them unbearable suffering, and these people should be able to avail themselves of the benefits as any other Canadian. To exclude people with mental illness from this bill, I think, is an infringement of section 15 of the Charter, but I leave that to lawyers to give a better opinion.
I am before the courts in Alberta now on a case with a woman who has a psychiatric illness who I think qualifies. Tomorrow, we'll hear a decision from the Court of Appeal on that, so it may be worthwhile looking at that.
The last one has to do with the issue of dementia. This did not come out of Carter but out of the special joint committee. This is the biggest issue, because a huge number of Canadians, including many of our friends and colleagues, are going to die from dementia. Dementia is a terrible illness. You lose your sense of your personality. You don't know who you are. You become incontinent of urine and feces, and you can go on in this state for 10 years. I witnessed my father and mother-in-law in that circumstance, and it is a terrible state to be in.
We do not need five years to study this, because over that period of time, a large number of Canadians are going to suffer needlessly because we're studying it. We need to have an advance directive, so that when you're competent, you can make a decision as to what happens when you slip into dementia.
We already have laws across Canada for advance directives for all manner of other things, and we really need to take the advice of the special joint committee in terms of advance directives on dementia. It will affect a huge number of Canadians, and I think we need action now rather than later.
In summary, I'm suggesting three amendments: one, that we remove the reference to death having become "reasonably foreseeable''; second, that mental illness be removed as an exclusion; and, third, that we add language on advance directives for people who are now competent but who are predictably going to become incompetent as they slip into the dark sea of dementia.
The Chair: Thank you, Dr. Smith. Dr. Kim, please proceed.
Dr. Scott Kim, Adjunct Professor, Department of Psychiatry, University of Michigan, as an individual: Thank you for giving me this opportunity to share my thoughts with you.
I'm going to limit my comments to the practice of providing physician aid in dying on the basis of psychiatric disorders — what I will call psychiatric PAD — but I will be happy to answer questions on other topics.
Since the special joint committee's report closely follows the models in Belgium and the Netherlands, I'm going to rely on two recent studies, one of which I have done, pertaining to these countries.
As a preface, I note that although people disagree about whether psychiatric PAD is acceptable, all sides of the debate, I think, can agree on a few points, and I'll start with that. First, people with severe psychiatric disorders suffer deeply, and we must respond to that suffering. I don't think there's disagreement there.
Second, people suffering from severe psychiatric conditions are particularly vulnerable. They are often stigmatized and made to feel unwanted. Because they're often seen as "other,'' many people, including some physicians who are not psychiatrists, have limited understanding of such disorders. A painful aspect of such disorders is that a patient's judgment, even if the person is legally competent, is often affected by illness-driven perceptions and feelings, such as feelings of despair and hopelessness, which we know can cause a sense of helplessness in others, as well.
Third, extreme caution in developing PAD policies is needed for non-terminal illnesses because premature and unnecessary loss of life is a great harm. Also, this is a very important point: The dead do not file complaints, especially a person who is isolated and stigmatized and who may have few persons who can speak for her after she is gone.
With that preface, I'm going to turn to a few conclusions based on a detailed report that I provided to the committee. You can look at my written document. I'm just going to give you a few conclusions, and you can look for the evidence and so forth in that document.
Number one, there's a gap between our idealized assumptions about psychiatric PAD, by focusing on clear cases that are clear in our minds for many people, and what actually happens. Although debates about it almost exclusively focus on treatment for treatment-resistant depression, people in Belgium and the Netherlands have received PAD for chronic schizophrenia, eating disorders, autism, prolonged grief, among others. Most have personality disorders and most are lonely and socially isolated. That has been well documented. We don't know why women are more than two times more likely than men to receive psychiatric PAD and to request it.
Number two, Dutch physicians disagree about medical futility in these cases. In about a fifth of the cases, patients are deemed to have medically futile conditions even if they refuse indicated treatments. It appears that not all patients who receive PAD for psychiatric reasons have received all indicated treatments.
This is because determining the medical futility of psychiatric disorders relies on clinical impressions that can vary between physicians because the criteria are quite broad. Even for "treatment-resistant depression,'' for example, applying that in a particular case is not as easy as we think, and for other conditions that are listed, it's even less clear. For instance, I'm not aware of any literature that a clinician can rely on to decide when a person with prolonged grief would qualify for PAD.
Now, with regard to decisional capacity of patients, experts find its assessment a challenging task. I have been studying this topic, and have written a book about it, over the last 15 to 20 years. There is considerable variability in judgment even among trained clinicians when cases are in the grey area — cases likely to be common in psychiatric PAD cases. Thus, one might expect that determination of capacity in that context would involve a high level of scrutiny and careful justification because that's one way to make sure that unwanted bias doesn't creep into those assessments. In my review of the Dutch psychiatric cases, I did not find such a high level or threshold of justification or scrutiny was the actual practice.
In short, physician judgments regarding futility and capacity require broad and vague criteria to be applied to complicated clinical contexts. They're likely to be inherently unreliable and influenced by the personal views of physicians. Just to illustrate that, I will point out that in the study from Belgium, which reported 100 consecutive cases, it was found that all 100 consecutive cases that she evaluated met both capacity and the criteria for intolerable suffering from medically futile psychiatric conditions without exception.
I should also note, as I report in my written document, that it's likely this one physician was involved in virtually all or most of the psychiatric PAD cases that occurred during the year she reports in that entire country.
Can psychiatric PAD be regulated reliably so that vulnerable non-terminally ill patients are not mistakenly given it? My sense is that although it may seem possible when we focus on idealized cases, the actual evidence suggests otherwise.
The Chair: Mr. Baillie, the floor is yours.
Patrick Baillie, Psychologist, Alberta Health Services, Mental Health Commission of Canada: Thank you, Mr. Chair and members of the committee, for the invitation to present on behalf of the Mental Health Commission of Canada. I begin by noting that Louise Bradley, CEO of the Mental Health Commission, is away on government business at the moment and expresses her regrets for being unable to present. Instead, for the second time in three weeks, you get me back again. It's an important dialogue, and we appreciate having the opportunity to engage in the process.
I want to begin by pointing out that the MHCC applauds those aspects of the bill that serve to protect the vulnerable, including those with mental health problems and illnesses by, for example, instituting a waiting period for the individual to have time to reflect on their request for medical assistance in dying and by requiring a repeat evaluation of consent at the time of administration of the medical assistance in dying. The commission also applauds the bill's emphasis, though primarily through the backgrounder document from the Department of Justice Canada, on the distinction between medical assistance in dying and suicide, the latter being a circumstance in which the individual was, as the backgrounder describes, "not approaching natural death.''
The commission supports the decision to take a phased-in approach in Bill C-14, adequate time being needed to facilitate a comprehensive, national conversation about the sorts of acceptable safeguards that you've already heard Dr. Smith and Dr. Kim discuss on the availability of medical assistance in dying for those who suffer from psychological or mental health conditions alone so as to minimize the negative impacts on people with mental health problems and illnesses when they are most vulnerable, as well as the impact on their caregivers and health professionals.
In a briefing document that may have been provided to you, there are 10 specific recommendations that the MHCC has put forward. In the interests of time, I'll discuss just a few of them.
The first is the notion of ensuring that there's adequate access to recovery-oriented mental health services across the country. As Dr. Kim has described, one of the primary reasons for individuals in the Netherlands seeking access to medical assistance in dying when they have a primary psychiatric problem are the issues of loneliness, social disconnection and a different level of access to treatment. If we have an individual who has been unable to get access to appropriate mental health care, as is often the case across Canada, and that individual starts to see medical assistance in dying as being an alternative to continuing to live without access to treatment, that causes the MHCC concern.
The second point is emphasizing the parallel importance of suicide prevention documents. Clearly a key part of the Mental Health Commission's focus is on suicide prevention, so it's important to distinguish between medical assistance in dying and the notion of suicide.
The third is a recommendation for holding a national conversation in which people living with mental health problems and illnesses are included. You heard earlier today about including other professional groups — occupational therapy, psychiatry, nurse practitioners — but very little conversation about including individuals with mental health problems who may have their own views on this bill and would provide a compelling and important voice in the conversation.
We want to make sure that there are appropriate mechanisms in place to minimize the risk of wrongful death, including, for example, consistent with recommendations you heard earlier today that the consensual and informed choice to access medical assistance in dying is made by an individual who has participated in an assessment that rules out the influence of mental health problems. The Oregon legislation is described in detail in the backgrounder document from Justice, but that document leaves out a very important part of the Oregon legislation, which is the following clause:
If in the opinion of the attending physician or the consulting physician a patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, either physician shall —
— and we know that "shall'' means "must'' —
— refer the patient for counseling. No medication to end a patient's life in a humane and dignified manner shall be prescribed until the person performing the counseling determines that the patient is not suffering from a psychiatric or psychological disorder or depression causing impaired judgment.
In those cases in which there may be some mental health element problem, not as the sole diagnosis because the bill clearly excludes that for now with a future dialogue to happen, to the individual's decision to seek medical assistance in dying, it's important to ensure that there has been the assessment that depression or some other mental health problem is not interfering with that person's judgment. It goes to the broader issue of the assessment of capacity.
As you all know, capacity involves the ability to understand the information relevant to the decision and to appreciate the consequences of the decision. What decision could be more impactful than the decision to seek medical assistance in dying. So we want to make sure that adequate safeguards are in place.
The recommendation by the commission is that two qualified mental health professionals be involved in the assessment, one of which is a professional without prior involvement in the patient's case who can provide an objective assessment.
Senator Jaffer: Thank you to all three of you for your presentations. What you are all presenting is one of the toughest things in this bill. The challenge I have with this bill is equality. Equality here is not about treating everybody equally but treating people differently. The challenge is the informed consent.
A person could meet all the criteria, be incurable, irreversible, natural death foreseeable, all those things in place, but may be unable to give informed consent because of their mental challenges.
Dr. Smith, I heard you about the advance directives. I heard that we shouldn't wait and all those things. Our challenge is how do we balance the protection of the vulnerable and making sure the vulnerable have the same rights as all of us?
Dr. Smith: Thank you, Senator Jaffer. I think we have protection already built into Bill C-14. We have two independent physicians. We have two independent witnesses. That seems to me to be over and above the protections anywhere else in the world.
People with mental illness should have the same rights and the same treatment as someone with any other kind of illness. There's no difference. If they are not competent, then they cannot consent. But there are many people with physical illnesses who are not competent. What I do not like is the carving out of mental illness as some kind of special category of medical illness. That is what mental illness stigma is all about. We need to get rid of that altogether.
I've met the doctors in Belgium and the Netherlands today who have dealt with these patients. I've met one patient in Canada who clearly met all the criteria. They have illnesses that will not get better. They've tried everything possible. They are suffering. They have a psychiatric illness. Why is that different than dying from cancer or a renal problem or ALS? I don't buy that. I don't think the Senate should buy that, either. We have to get mental illness out of this bill all together.
It was not recognized in Carter. In fact, Carter said psychological suffering. Let's not stigmatize the mentally ill. Let's hear from them. I agree with Dr. Kim, let's hear from the mentally ill. Let's get them in front of a judge. That's the fairest procedure. Let's see what the court has to say about their ability to consent and whether they meet the Carter criteria.
Senator Jaffer: There was an earlier witness, if I understood him correctly, who said that we should have a psychiatric opinion for someone who has mental challenges. Do you think that would be helpful in this bill?
Dr. Smith: No matter what the medical illness is, you're probably better off having a specialist. If it's kidney cancer, you need a kidney specialist. If you have ALS, you get a neurologist. If it's a psychiatric illness, get a psychiatrist. That makes common sense. That's treating everybody the same.
We have to keep in mind that psychiatric illness is in the end a disorder of the human brain. That's all it is. It's another organ of the body. Why do we discriminate against these people simply because they have a mental illness as opposed to cancer or ALS?
Senator White: Thank you all for participating. Dr. Smith, you stated that you would like to see "reasonably foreseeable'' removed. Do you have a replacement for that?
Dr. Smith: This phrase is fairly familiar to judges and lawyers. It's very inexact for doctors. My colleague Richard Fowler, a Q.C. from Vancouver, has spoken about how vague this language is and how it may deter physicians from being involved in this. If physicians transcribe this law or step over the line, they are committing homicide. The language must be perfectly clear. "Reasonably foreseeable'' does not say anything.
It can be hours to multiple years when things are "reasonably foreseeable.'' Carter did not talk about terminal illness. We don't need that kind of language in this bill.
Senator White: So what would you replace that with?
Dr. Smith: I would just get rid of it altogether and leave it with the language that Carter had, "grievous and irremediable'' and "unbearable suffering.'' Those are the only things we need to have.
In fact, the lead plaintiff in the Carter case, Kay Carter, would not have qualified under this legislation. I knew her well. Kay did not have a terminal illness. She had spinal stenosis. She was suffering. She would have lived for another five or 10 years. She went to Switzerland to receive physician-assisted dying because it was not available in Canada. That will increasingly happen to Canadians of means if we deny them access to physician-assisted death. We need to simply stick with the language of Carter, which was pretty clear.
Senator White: Do we need the bill at all? Why wouldn't we just follow what the Supreme Court has stated and go forward?
Dr. Smith: Well, that's a very interesting question. The precedent on this was when the Supreme Court decided abortion was legal. No government in Canada touched that.
Personally, I would rather have no legislation than Bill C-14. That would mean the regulation would have to be done by the medical licensing boards in the provinces. I would much prefer that, using the language of Carter, to having a flawed bill that we're going to revisit in five years and study while Canadians suffer.
Senator White: Thank you.
Senator Batters: Thanks very much. Dr. Smith, you stated a specialist should be involved in this particular arrangement. This bill currently requires two nurse practitioners to give the approval to administer the medically assisted suicide.
Dr. Smith: Like many things in Canada, it is a compromise. I have worked in rural Canada and understand there are many small communities in the North that do not have physicians. The reason for nurse practitioners is to allow Canadians from rural, isolated areas to have their Charter rights through a nurse practitioner.
Ideally I would like the patient's family doctor and an independent specialist to look at them, but we're in Canada.
Senator Batters: Dr. Baillie, can you tell me the average waiting period to see a psychiatrist in Canada? What percentage of Canadians suffering from mental illness have not sought treatment? I'd like you to tell me a bit about the couple of safeguards the Mental Health Commission of Canada proposed. One of those was a three-month waiting period, which is substantially longer than the 10 days now being proposed by the federal government.
Mr. Baillie: The waiting periods for access to psychiatry vary across the country. For a community-based psychiatrist in Quebec, the waiting list is one or two years. In Alberta for a public psychiatric, it still sits at close to a year.
Regarding the percentage of Canadians who don't have formal access to treatment, a trained mental health professional, close to 75 per cent of Canadians would not have access. A much broader issue in that health care funds access to physicians and psychiatrics but not, for example, to occupational therapists and other regulated mental health professionals.
In terms of the safeguards, the second issue the commission wanted to address relates to the reflection period you described. If there is any indication of undue influence or significant impairment from the mental health problem, then we would be recommending a longer waiting period not only to allow for further assessment but also to allow for the opportunity for the individual to perhaps be informed about other forms of treatment that are available beyond those pharmacological interventions, for example, that have previously been tried.
Senator Batters: Dr. Kim, in your detailed brief, this quote stuck out for me:
As someone who has been studying and teaching both the normative and empirical aspects of decision-making capacity for close to 20 years, I would state emphatically that anyone who is not worried about the difficulties associated with assessing the capacity of persons with severe psychiatric disorders who are requesting PAD is not basing that view on existing data.
I would appreciate more information about that, because I recognize you had just a short period of time to give us your opening statement.
Dr. Kim: Yes. Thank you. Even though we have these criteria that we're taught, most psychiatrists — psychiatrists we surveyed — find that it's a very challenging and complex task to apply these fairly broad criteria to clinically complex situations, especially when the patient is able to communicate but may be under the influence of a disorder that could distort their judgment or thinking.
We have done studies where we can show the exact same cases to many psychiatrists — 100 psychiatrists. You will get very diverse responses about whether they think people are competent. We do it because we're required to do it, and when the cases are clear, it's easy, but when people have disorders that are much subtler that you have to really assess carefully, it's not as easy.
We recently went through all the documents that we reviewed in the Dutch cases of 66 completed cases of assisted death. One of the things that struck me was the fact that, over half the cases, there are only just summary judgments of the doctor — usually it's not even a psychiatrist — who says the person is competent. However, these people have chronic psychotic disorders; chronic, severe eating disorders; and other disorders that we know from clinical practice can often impair people's decision-making capacity. And that's not explained.
So I think these kinds of decisions can be seriously influenced by the personal views of the people who are doing these assessments.
You would want to see much more detailed ways of doing it, but I just didn't see that.
Senator Baker: Thank you to the witnesses for their very excellent presentations.
Just a point of clarification, Dr. Smith. You said you're aware of the circumstances of Mrs. Kay Carter in the Carter case. As you're probably aware, the Carter case judgment was not about the condition of Mrs. Carter; it was about the condition of a Mrs. Taylor. During the judgment, the court only referred to the condition of Kay Carter indirectly, through testimony given by the daughter. I'll read you two sentences. As you correctly pointed out, she:
. . . was diagnosed with spinal stenosis, a condition involving progressive compression of the spinal cord. Kay was advised that surgery could relieve some of the compression of her spine, but she declined due to the significant operative risks.
Kay's physical condition deteriorated steadily over the ensuing months, though her mental faculties remained intact. By August 2009, she required assistance for virtually all of her daily activities, including eating and toileting. . . . She was confined to a wheelchair, and could not move it herself. . . . Kay suffered chronic pain, and was prescribed medication at increasing levels as her condition deteriorated. . . .
. . . [And she was concerned] that she might not physically be able to travel to Switzerland given her rapidly deteriorating condition.
That was in reference to her condition, and that's all the trial judge said. But the trial judge, in determining Ms. Taylor's condition, required that she not only be terminally ill to meet the requirements of the judgment but that she be near death. That's paragraph 1414 of the judgment.
My question to you is this: How can you say conclusively that Kay Carter would not have met the requirements of the act, given those statements of extreme deterioration given by the trial judge in passing, more or less, but not in making a definitive finding of fact?
Dr. Smith: I have the advantage of having been an expert witness in that case and having known all of the individuals personally, including Mr. Joseph Arvay, Q.C., who was counsel. Mr. Arvay and Kay Carter's relatives are of the opinion that she would not have met the criteria. So I would go with their view, because they know this case intimately. My view as an expert witness is that she would not have met those criteria and may have lingered on forever.
In regard to the other plaintiffs, the last one who died — last week, incidentally — with physician-assisted dying, they were not terminal at any point, and they would not have had the advantage of physician-assisted dying or medical aid in dying under Bill C-14, but they would have under Carter. So I see no reason to vary from the language of the Carter decision. It was well thought out. Madam Justice Lynn Smith wrote that judgment. The Supreme Court more or less rubber-stamped it, and I think we should use that as our guiding post. There is nothing in that judgment about terminal illness.
Senator Baker: What case is it that you referenced? The other day, you said there was a case where somebody was not terminally ill but received the judgment of a Superior Court. Do you remember what case that was?
Dr. Smith: No, I think I referenced a case that I had been involved with in Alberta in which a woman is before the courts with the issue of mental illness as the sole criterion. I have reviewed that file, and I can assure you that she meets the criteria of grievous, irremediable and intolerable suffering based on a psychiatric diagnosis.
Senator Baker: The judgment is tomorrow?
Dr. Smith: The judgment is tomorrow from the Court of Appeal. This woman went to court. She's a woman of very modest means. She found herself in court being opposed by the Attorneys General of B.C., Alberta and Canada. Although the judge ruled that she can have physician-assisted suicide, the Attorney General of Canada has appealed that to the Court of Appeal.
This has caused a delay and all kinds of expenses for this woman. She continues to suffer. This is exactly what happens when we get the force of government into court, challenging people's right to die under the rules that are pretty clear under Carter.
[Translation]
Senator Dagenais: My question is for Dr. Smith. You seem quite well acquainted with the courts, Dr. Smith. I am not sure whether it's common practice throughout Canada, but, in Quebec, simply having two psychiatrists appear as witnesses in a court case is enough to see how difficult it is to achieve a 100 per cent reliable diagnosis. Given that reality, if there are two conflicting psychiatric opinions in the context of a MAID request by a person with mental health problems, who gets to make the decision?
[English]
Dr. Smith: Let me assure you that there are waiting lists to see psychiatrists. There are waiting lists to see oncologists. There are waiting lists to see rheumatologists. Canadians do not get ready access to the medical care they need.
I don't buy the fact that it is any different in psychiatry. There are certainly waiting lists, but it is no different than any other branch of medicine.
Again, I don't see why we need — we're not going to solve the problems of health care with Bill C-14. Canadians do not, unfortunately, get quick access to needed health care on a regular basis.
Having said that, I don't see any reason why we need to discriminate against psychiatric patients as compared to patients with other illnesses, as well, who also have long waiting lists to get in to see doctors.
Are psychiatric patients more incompetent than other patients? I don't buy that. If they have a psychotic illness, perhaps, but if you are suffering from terminal cancer you may be incompetent as well. You are suffering from pain, your family is watching you die, and you have all manner of worries on your mind. The issue of competency is not unique to psychiatric illness. It is seen in all manner of people who are suffering, again, a grievous and irremediable illness.
Senator Joyal: Dr. Smith, I would like to go back to a line of your brief, in which you refer to the reasonably foreseeable death concept. You write:
It is purported that this language was necessary to protect vulnerable persons "in moments of weakness to end their lives.''
If I understand the reasoning of the bill, it wants, in fact, to make sure that people who have access to physician assistance in dying are close to dying. They're not terminally ill as the Québec legislation proposed to entrench, but they are on the verge of dying. It excludes all other people who might be suffering a grievous, irremediable and intolerable condition on the basis, as you say, that they are vulnerable.
The court has declared sections 14 and 241 of the Criminal Code to be unconstitutional because they imposed a general ban. I get the impression that if we exclude all those patients who are suffering from a grievous and irremediable illness and are in an intolerable situation, the bill, in fact, does exactly what the court has refused to grant as an argument to maintain the ban on physician-assisted death. Then, vulnerable persons become a concept for which we have to propose guidelines.
I feel that the bill, in my opinion, doesn't reconcile the concept used by the court to impose the ban, and reintroduces the general ban for other categories of patients. Am I right to interpret the bill like that?
Dr. Smith: I don't know. I'll tell you what I think about this, though. Canadians have studied this issue of whether all disabled people are vulnerable. It was first studied by the select committee in Quebec. They found no evidence that individuals who were considered vulnerable were being given physician-assisted dying. This was reviewed in depth by Madam Justice Lynn Smith, who rejected the testimony that there was any evidence that the vulnerable were being taken advantage of in any jurisdiction in the world that has this kind of legislation. In fact, my personal view is the vulnerable are much more likely to be taken advantage of in an unregulated environment than when we have legislation.
Now, there are some things I like about Bill C-14. I like the clause about two independent doctors, and I like even more the one about two independent witnesses. This, to me, is plenty of protection for the vulnerable to make sure that people are not being killed by greedy relatives or because of health care costs and things like that.
I think we need to protect the vulnerable, but in regulated environments there's no evidence that the vulnerable are being taken advantage of.
Senator Plett: Just a couple of comments and then one question.
Mr. Smith, you have a few times cited the Netherlands' model as something that we should possibly try to follow. The fact of the matter is that in the Netherlands a 64-year-old individual who was lonely was given assisted suicide; a 50-something-year-old woman who had a phobia of germs was allowed assisted suicide. If we followed the Netherlands completely, we would have about 9,000 cases a year in Canada.
You say mental illness is exactly the same as any other illness. I believe that mental illness in people clearly impacts their ability to make sound decisions. I'm not sure how we can possibly square that and say people with a mental illness can make absolutely sound decisions.
I want to use one personal example, if I could, and then I would like Mr. Baillie, at least, to comment on it.
A person close to me suffered a head injury many years ago in an accident driving a four wheeler. He spent weeks in a coma and came out of the coma but suffered excruciating headaches and depression, and told me on numerous occasions how he wanted to go out behind one of the sheds on his farm and kill himself. I believe that had he had the opportunity to ask for assisted suicide, he may well have done that.
However, he came out of this. His headaches and depression disappeared and he ran his farm for a number of years before he tragically died of a heart attack. Nevertheless, here is somebody who probably would have, under what you're suggesting, asked for assisted suicide.
My question to you, Mr. Baillie, is in your work, do you see quite often that people come out of situations like this, lead constructive lives and change their minds about suicide?
Mr. Smith, I'm happy to have you answer this as well, but I'd like to hear Mr. Baillie's answer.
Mr. Baillie: We are certainly familiar with the phrase that suicide is typically a long-term solution to a short-term problem. For some individuals, their mental health challenge can be short-term. It may relate to appropriate kinds of treatment or support in the community. We need to make sure the person has had the opportunity to access those kinds of treatments so that we're not making a decision for an individual to terminate their life when there may be other, more positive options available to them.
The story you've described is not uncommon in our field. People come to us, typically, seeking treatment when they've reached a certain level of distress, looking for a professional to help them, because in many cases they believe they can get better. If they don't see immediate results, that may fuel a desire to end their own life, and if a regime was in place, they might seek out medical assistance in dying. As the Mental Health Commission, we would rather focus on the potential for recovery and options for people to succeed in the community.
Dr. Smith: It's interesting that you mention the Netherlands because, as you know, I'm sitting in Amsterdam, and I've talked to many of the people involved with these cases.
The devil is in the details. I don't think you can read about a case in the newspaper and take it as factual evidence that something is right or wrong. You really need to look deeply into what the circumstances were for that individual.
I'm really pleased to hear that your friend came out of his of depression; most people do. We're not talking about most Canadians with mental illness here. We're talking about an extremely small percentage whose situations must be, to go back to Carter, irremediable, grievous and intolerable. That does not apply to 99 per cent of people who have mental illness in this country. We're talking about a very small number of people, and it's those people, when you look carefully at their cases, who meet all of those criteria: they are competent, and they have gone through all manner of treatment.
The people I have assessed have been through three courses of ECT, have been in five psychiatric hospitals, had psychotherapy and medication, and they're not getting better. A certain number of cases are refractory, and we're not going to get them better. Why do we want those people to suffer any more than someone who has cancer?
Senator McIntyre: Thank you all for your presentations.
Mr. Baillie, in recommendation number 6 of your brief, you bring to our attention the unique perspectives of First Nations, Inuit and Metis. There's no question that concerns have been raised in relation to medical aid in dying and its introduction into First Nation communities that face high rates of suicide. Assuming this bill becomes law, what are some of the challenges the federal government would face in delivering culturally and spiritually appropriate end-of-life care services in indigenous communities?
Mr. Baillie: I think if we look at recent events in Attawapiskat, as well as in other areas, there are challenges in getting those individuals access to culturally sensitive medical care, particularly to culturally sensitive psychiatric care. Being able to tease apart those issues that relate to the mental health of Canada's First Nations, Inuit and Metis poses particular challenges and requires further attention, hence the recommendation being made by the commission to look at those, involving people in those communities in the discussions, instead of believing in a one-size-fits-all solution.
Senator McIntyre: Dr. Smith, my question has to do with judicial authorization. In order to avoid abuse and for both practical and symbolic reasons, do you think a Superior Court judge should be required to review and approve each request for physician aid in dying prior to it being implemented?
Dr. Smith: Senator McIntyre, I don't believe that's at all appropriate. In fact, what that does is places an incredible burden on people who may be of little means, are likely suffering from some type of a physical or psychiatric illness, and they're having to face in the courts, as my patient has in Alberta, the weight of the federal government, who is challenging them and causing delays. We do not need to put a burden of suffering on Canadians to do that. No other jurisdiction in the world has that level of judicial review. Getting before judges is not an easy thing to do. It is a costly burden to put on Canadians.
I want to come back briefly to your first comment, and that is to recognize that we have a suicide crisis in Canada right now that's got nothing to do with physician-assisted dying. It has to do with disadvantaged Aboriginal communities and fentanyl overdoses in the streets. If the government wants to do something that will impact the suicide rate, let's focus on that. The physician-assisted dying is an infinitesimal part of the suicide issue. Suicide is a major problem, but let's not be distracted with physician-assisted dying on that matter.
Senator McIntyre: On the judicial authorization question, I want to remind you that Madam Justice McLachlin raised it in her dissent in Rodriguez, as did the judge in Carter during the period of her judgment suspension, likewise the five judges of the Supreme Court in granting Parliament a four-month extension. I understand what you're driving at, but there is room for judicial authorization.
Dr. Smith: Obviously, if the judiciary or Parliament decides to do so, that's well and good, but I'm telling you that it will place an enormous burden on Canadians.
[Translation]
Senator Bellemare: I have a question that poses a major concern for me. What happens if this bill isn't passed? Dr. Smith has said it would be better to have no bill at all.
In certain countries, such as Switzerland, organizations come together — private organizations like Lifecircle, which advocates for dying with dignity and for self-determination regarding the end of one's life. Lifecircle partners with groups like Eternal Spirit, which examine requests made to them for assisted death. And Eternal Spirit helps implement the process, if the request is approved in Switzerland.
In the absence of a statute — that is, if the decision in Carter stands in that the government does not invoke the notwithstanding clause — is there a chance this kind of private initiative could emerge in Canada? Based on your knowledge of the health care field, is it possible that, without a statute, we could see private clinics or non-profit organizations?
[English]
Dr. Smith: I talked this very day to people from Dignitas in Switzerland. Switzerland is a unique environment. It is the only jurisdiction in the world that allows, if you like, tourism for people who want to die. You would be surprised at the number of Canadians and Europeans who are not Swiss who go there because of restrictions in their own environment.
Is that likely to happen in Canada? I think no one in Canada has an appetite for that. But if we have restrictive legislation here, it will force more Canadians to go to Switzerland. The cost of going to Switzerland to die is about $30,000. It's well beyond the means of most average Canadians, but people who can afford it, in the current environment, are going to Switzerland. I don't know what the Canadian numbers are, but my guess is probably 50 people a year are going to Switzerland to have assisted dying.
Senator Batters: Dr. Kim, in your presentation you indicated that women are twice as likely to request physician- assisted suicide, in the examples that you have studied. I find that a very interesting statistic, because compared to North America — I believe it's Canada, but it may have worked in the U.S. as well — women here are many more times likely to attempt suicide than men, but actually men are four times more likely to die by suicide. That's typically because they choose more lethal means.
Can you comment on why you think there may be that marked distinction between the two? Is that because they have access to the devastatingly final choice that they know will work?
Dr. Kim: This is a finding that was in both of the papers I referred to. Honestly, I don't know why it's the case. It is a finding. In the U.S., of course, the attempts are higher in women as well, but men succeed. It's a complicated issue. I don't know exactly how it would play out.
If I may, I'd like to address one issue that Dr. Smith brought up about the issue of stigma and how the bill is stigmatizing psychiatric patients.
As I understand the bill, the bill applies equally to every person who is dying. Everybody dies, so there's no discrimination based on that, and it's clear that no one is discriminated against because of psychiatric disorders, as far as I understand. I wanted to make sure that I'm on record as saying that I don't see that as a stigmatizing bill, as a psychiatrist.
The grievous and irremediable standard, if I'm hearing things correctly, is proposed as more precise than the idea of a person near death. I find that rather surprising, given that the actual evidence in Belgium and the Netherlands, in which people have used those kinds of vague criteria, have led to the kind of data that I've described in my document and today, which is that there's lots of disagreement between doctors. In fact, the people who research this topic say there's no definition of unbearable suffering.
The idea that we can have more precise judgments by doctors using grievous and irremediable, less defined, is very puzzling to me because all the evidence shows that it leads to — I wouldn't say intentional abuse as was described — but certainly lots of disagreements among doctors, in which case it's very difficult to say that applied to a population you're going to get a very reliable practice.
We're talking about practice, not picking out specific cases in which we might all agree. If the law could be enacted in such a way that we only apply things to perfect instances, then you would not have to worry. What you need to do is look at the data that's been applied for many years across situations.
Lastly, I'd like to point out that what I've tried to do is give you data that you can go to and look at, for example, decision-making capacity.
I am a little bit surprised that a fellow psychiatrist states that mental illness — I can't really repeat the exact words — had no relationship to mental competence. I find that an extremely surprising statement. You can make that statement if you don't appeal to the mounds of data and studies, many of which I've conducted. You can say that; that's an opinion.
I think what that illustrates is this: If you have very strong views about this topic, as a doctor, when you evaluate a patient, you will see things a certain way. Other doctors may not, and that's precisely the point. If you enact these kinds of regulations with broad ideas, people's personal views will have a strong impact.
The Chair: Okay, thank you, Dr. Kim.
Dr. Smith: I want to respond to that —
The Chair: Thank you. I'm sorry; we can't have a continuing debate about that issue. We've run out of time. I'm going to thank all of you for being here and assisting us with our deliberations.
For our final panel today, we have joining us, from the Canadian Unitarian Council, Vyda Ng, Executive Director; from the Centre for Israel and Jewish Affairs, Richard Marceau, General Counsel and Senior Government Advisor; from the Coalition for HealthCARE and Conscience, Laurence Worthen, Executive Director of the Christian Medical and Dental Society of Canada, and Dr. Sephora Tang, who is a psychiatrist at the Ottawa Hospital; and, from the Canadian Council of Imams, Sikander Hashmi, a spokesperson for that organization. Thank you all for being here. We very much appreciate it.
Dr. Tang, I gather you're here simply to answer questions. Mr. Worthen, do you have an opening statement? We will just move across the table. You can begin.
Laurence Worthen, Executive Director, Christian Medical and Dental Society of Canada, Coalition for HealthCARE and Conscience: Good afternoon, and thank you for the opportunity to speak with you today.
I'm speaking as the spokesperson for the Coalition for HealthCARE and Conscience, on behalf of His Eminence Thomas Cardinal Collins. The Cardinal sends his regrets that he could not be here to speak with you about legislation that will have a profound impact on Canadian society, both now and in the future. I am pleased to welcome Dr. Sephora Tang, an Ottawa psychiatrist, who is here to answer your questions this evening about how this proposed legislation impacts her and the patients she serves.
Our coalition represents more than 5,000 physicians across Canada, like Dr. Tang, and more than 110 health care facilities with almost 18,000 care beds and 60,000 staff.
Today I will address the need for amendments to Bill C-14 that will protect the conscience rights of health care workers and facilities with moral objections to euthanasia and assisted suicide.
We wish to make it clear that, should Parliament legalize medical aid in dying, we will not, in any way, obstruct patients who decide to seek that procedure, and we will never abandon our patients. But what our members cannot do is perform or participate in what is referred to as medical assistance in dying. To be clear, by participation, I also mean playing a role in causing death by arranging for the procedure to be carried out by someone else through referral.
The current preamble to the legislation does note that the government respects "the personal convictions of health care providers.'' While that respect is very much appreciated, it does not carry the same legal weight as legislative protection.
No foreign jurisdiction in the world that has legalized assisted suicide and euthanasia forces their health care workers, hospitals, nursing homes or hospices to act against their conscience or mission or values. Every permissive jurisdiction has a conscience clause, and participation is voluntary.
In Canada, to force providers to act against their moral convictions is to breach section 2 of the Charter of Rights and Freedoms.
We know that hospitals and regulators all across the country are already developing policies on this subject. We know that you heard from the College of Physicians and Surgeons of Ontario, for example, who are insisting on an effective referral. We believe that this requirement is excessive, and that the college is exceeding its jurisdiction in this regard. There are many other alternatives that could be employed, like transfer of care and direct patient access, that could accomplish the same objective, without forcing doctors to be liable to discipline from the college.
The current CPSO stand poses an immediate and urgent problem for those doctors who are conscientious objectors, like Dr. Tang. They are being forced to choose between career and conscience and must make these decisions when this legislation comes into effect, which, as you know, could be within weeks. Their life's work is in jeopardy.
We maintain that if Parliament wishes to open the Pandora's box of medical aid in dying, it must take concrete action to protect these conscientious health care providers and organizations.
Through our discussions with the provinces, we know that it is unclear whether, in fact, they will decide to legislate. In this legal vacuum, colleges, provinces, health authorities, nursing homes and hospitals can create policies that will encroach on the constitutional rights of caregivers. This will create chaos. For example, while one medical college, the CPSO, is requiring referral, at least seven others have already indicated they will not.
On such a crucial issue, real matters of life and death, Canadians shouldn't have to deal with a patchwork approach. Amendments from the Senate would send a clear signal to the provinces that the Charter rights of caregivers and their organizations must be protected equally across the country.
Parliament has legislated on matters that overlap into provincial or territorial jurisdiction in the past. Consider the Civil Marriage Act or the legislation legalizing the use of medical marijuana. We therefore urge the Senate to clearly articulate that the purpose of this bill is to provide exceptions to the Criminal Code, not to create an obligation for anyone to be forced to participate in medical assistance in dying against their will. Participation by caregivers, either directly or indirectly, should be voluntary, and no one should be discriminated against because of their unwillingness to participate due to their conscientious objection.
In closing, we'd like to remind the committee of the landmark Carter case in which the Supreme Court of Canada said that no physician could be forced to participate in assisted death. If doctors are forced to participate, it will essentially exclude them from practising medicine because of their conscience or religious beliefs. This is essentially discrimination. This does not create the kind of tolerant, inclusive or pluralistic society that Canadians deserve.
Sikander Hashmi, Spokesperson, Canadian Council of Imams: Thank you very much, Mr. Chair, and good afternoon, everyone. I would like to start off by thanking each you for the opportunity to discuss Bill C-14.
My name is Sikander Hashmi. I serve as an Imam at the Kanata Muslim Association and am a member of the Council of Imams of Ottawa-Gatineau. This evening, I am joining you as a spokesperson for the Canadian Council of Imams.
As in most other faiths, neither euthanasia nor assisted suicide is supported or encouraged in the Islamic faith tradition. However, since that matter has already been decided by the Supreme Court, our concerns and recommendations regarding Bill C-14 centre around three things: safeguarding interests of patients in distress, protecting patients who wish to live, and conscience protection for health care providers and faith-based facilities.
Most Canadians would agree that life is sacred and an effort should be made in most if not all circumstances to preserve it. In highlighting the importance of saving a life, the Quran likens the saving of one life to saving all of humanity. Undoubtedly, the issue of assisted dying is of concern to many Canadians. Canadians are caring people. When we see others in pain and distress, we want to help.
Muslim faith leaders, along with leaders of other faiths, have a long tradition of caring for the ill. We have witnessed first-hand the terrible toll that illnesses and pain can take on patients and their families. We understand that in some cases patients experiencing extreme levels of pain and suffering and those expecting the same in the future may desire an end to their life. We empathize with them, and as we draw from our faith traditions, we are instructed to pray for them to gain relief from their suffering and to try our best to make them comfortable by providing the best possible care. We also know that when a human being voluntarily seeks an end to their life, it is a testament to the extreme pain and distress that they are experiencing. It is a cry for help.
Whenever an individual seeks to end their life, we as a society know not to grant them their wish. Rather, we offer them compassionate care and assistance with the aim of alleviating the pain and distress they are experiencing. We never assist them in ending their lives and instead make efforts to dissuade them from doing so. We believe that requests for death due to pain and distress caused by illnesses or disabilities should be dealt with in a similar manner.
Therefore, we recommend that under safeguards, Bill C-14 require medical practitioners to ensure that after making a request for assisted death, patients are met by an end-of-life care team consisting of a psychiatrist, a social worker and, if the patient so wishes, a spiritual care provider; that members of the end-of-life team be required to discuss with patients the reasons for the request and present all available care options to ensure that patients are voluntarily making informed decisions; and that the end-of-life care team and the medical practitioner confirm that all available treatments and pain management techniques have been exhausted and that they have not been able to make the suffering tolerable for patients under conditions that the patient considers acceptable.
While Bill C-14 offers some safeguards, we believe there should also be measures in place to ensure that patients and the vulnerable are protected from errors that could have serious consequences. Unfortunately, errors, even fatal ones, are a reality in Canadian hospitals. The 2004 Baker-Norton study found that up to 23,000 Canadian adults were dying every year due to preventable adverse events in acute care hospitals. Therefore, we believe that assisted dying should be highly regulated in order to protect patients who do not wish to die. We recommend that the ability to provide assistance in dying, including access to substances that cause death, be limited to specially trained and certified health care practitioners authorized by the Minister of Health and the Minister of Justice.
We are also very concerned about the protection of conscience rights of health care providers and faith-based facilities. Except for a very brief mention in the preamble, the draft bill is disturbingly silent on this issue. Conscience rights should be given, in our opinion, the same level of importance as the patient's right to seek assistance in dying. In our view, the level of disengagement from assisted death should be at the discretion of individual health care providers and faith-based care facilities and should be publicly disclosed to would-be patients. This should be clearly specified in the bill.
We firmly believe that as Canadians we must do more to provide compassionate care to those who are ill and to find better and more effective ways to alleviate their suffering and improve their quality of life. We believe it is possible for the federal and provincial governments to respect the Carter decision while promoting the sanctity and value of life. Instead of encouraging death, let us come together to enhance and cherish life.
[Translation]
Richard Marceau, General Counsel and Senior Policy Advisor, Centre for Israel and Jewish Affairs: I am here on behalf of the Centre for Israel and Jewish Affairs, better known by its acronym CIJA. CIJA is the advocacy agency of the Jewish Federations of Canada. We are not proposing a comprehensive formula to address every aspect of medical assistance in dying; nor are we putting forward an articulation of Jewish religious law on the issue. Furthermore, we do not purport to convey the uniform position of all Jewish Canadians.
[English]
You know the old saying: Two Jews, three opinions.
[Translation]
However, we believe our position faithfully represents the key points of unity within the Jewish community. Some in our community support physician-assisted dying, whereas others are opposed to it. Despite divergent opinions, there is a strong consensus that, following the decision in Carter, substantial measures are needed: firstly, to protect health care providers who object to medically assisted dying for reasons of conscience; secondly, to ensure that eligibility for MAID is sufficiently regulated to protect vulnerable persons; and, thirdly, to ensure that there is truly access to high- quality palliative care.
Many health care practitioners object to MAID based on deeply-held professional, moral and religious convictions. For some providers, even referring a patient to medical assistance in dying would be an unconscionable act.
[English]
CIJA is encouraged by the amendment adopted unanimously in the house committee last night that states clearly that nothing in the act compels an individual to provide or assist in providing medical assistance in dying.
[Translation]
This is an important amendment, and we are happy it received unanimous support yesterday.
[English]
While the bill now states clearly that it does not compel health care providers to violate their consciences, the importance of which I cannot overemphasize, there is nothing in the bill that would preclude a provincial legislature or a college of physicians and surgeons from doing so. There is nothing in Bill C-14 that would prevent discriminatory employment practices based on a health care provider's willingness to provide MAID, even if constrained to areas of federal jurisdiction.
While we appreciate the jurisdictional challenge of producing a comprehensive federal response to Carter, I would encourage this committee to consider whether there's a way for conscience rights to be further strengthened in federal legislation to demonstrate further leadership that may inform subsequent complementary provincial initiatives.
[Translation]
But I must stress that accommodation of the beliefs of health care professionals should never limit patients' access to medical assistance in dying.
[English]
Several models have been proposed to balance these competing rights, which I would be happy to discuss further.
[Translation]
With respect to eligibility, we empathize with patients below the age of majority who are suffering from a terminal condition and wish to avail themselves of MAID. Given the finality of medical assistance in dying, we believe a cautious approach to criteria for consent is warranted.
We believe the government has struck the correct balance in Bill C-14 by limiting access to MAID to competent adults 18 years of age or older who are at the end of life. This is consistent with assisted dying laws in Quebec and other North American jurisdictions.
Many in our community believe that Canadians should be able to provide consent for MAID in advance of physical or mental deterioration, by establishing advance directives that apply if they become incapacitated.
Some view this as a fundamental component of any effective MAID regime. Others have voiced serious concerns. Upon diagnosis, the patient may not wish to live through an advanced stage of their illness. But this does not mean their desire for MAID will necessarily remain when they are eligible but no longer able to revoke consent.
If this committee chooses to amend Bill C-14 to include advance directives, we believe such directives should adhere to the same rigorous safeguards that are defined in the bill to ensure informed consent. Patients would have to satisfy these requirements while still competent to give informed consent, and their directive would only be carried out once they subsequently satisfy all eligibility requirements.
The last point I wish to discuss is an issue on which there is clear consensus: high-quality palliative care should be universally available. It is essential that medical assistance in dying not be the only, or the default, option available to Canadian patients.
[English]
Vyda Ng, Executive Director, Canadian Unitarian Council: The Canadian Unitarian Council thanks the committee for the opportunity to present today. We are an association of 46 Unitarian congregations brought together by a commitment to social justice. We have been active in choices in dying since the early 1970s. We were involved as intervenor in the Taylor and Carter cases in 2012 and 2014 and most recently presented to the joint committee in February. We want to focus today on several areas, and the first is that of the definition.
The proposed definition outlined is problematic and departs from the original definition outlined in the Carter decision. The definition of "grievous and irremediable'' specifies that a person has to have a serious and incurable illness to be considered for medical assistance in dying. We believe that this definition is narrower and more restrictive than was intended in the Carter decision. Including incurable in the definition suggests that those who have a condition for which there is treatment and a cure will be excluded from this process, even if their condition worsens as a result of the disease. It also suggests that patients must undertake all treatment options in order to pursue a cure, even when those treatment options are not palatable or cause excessive pain or suffering.
Subsection 241.2(2)(b) specifies an advanced state of irreversible declining capability. This excludes those who have chronic or degenerative conditions that are serious and incurable but which may not have advanced into irreversible decline.
Subsection 241.2(2)(d) adds that their natural death has become reasonably foreseeable. This was not a provision in Carter and will subject those Canadians who are suffering but whose conditions do not come with a terminal sentence to unnecessary and prolonged periods of distress.
This requirement limits access to those whose deaths are imminent and excludes many more with chronic conditions and intolerable suffering. The length of time considered to be reasonably foreseeable is open to interpretation and may not work to the advantage of the individual if their physician determines that reasonably foreseeable is nine months rather than three months.
We recommend that this subsection be struck and replaced with text closer to the original Carter terminology.
Our second area of concern is that of safeguards. We believe that safeguards are necessary, but the following will make it onerous and restrictive for individuals to access medical assistance in dying, or MAID. Subsection 241.2(3)(g) wants to ensure there are 15 clear days between the day on which the request was signed and the date on which MAID is provided. A period of reflection is helpful; however, we recommend this should be subject to change if the circumstances of the individual worsen rapidly, and should be assessed on a case-by-case basis.
The provision for an individual to give express content to receive MAID places another barrier in the way. Where previous consent was already given, we recommend that this subsection reverts to previous consent if the individual is not conscious or capable.
The third area is that of equitable access and conscientious objection. Consistent regulations need to be set out in federal legislation that specifies processes by which individuals can access MAID if their medical professional exercises their right of conscience not to provide this.
The process needs to state the alternative methods for individuals that honour the medical professional's decision and that do not infringe on the individual's rights, add to the challenge of living with a difficult condition or make it more onerous for the individual. The rights of the medical professional should not supersede the rights of the patient.
This needs to be consistently mandated at the federal level in consultation with provinces and territories. Rural and remote areas have specific challenges, and federal legislation needs to define explicit processes for these circumstances.
The fourth area is advance consent. Bill C-14 does not include processes for advance consent, and this provision is necessary in the case of individuals who may later develop advanced dementia, lapse into unconsciousness or have other degenerative conditions that may impact capacity. The exclusion of this option leaves out whole categories of Canadians who want the choice of medical assistance in dying while they still have the capacity to make that decision. We recommend that an amended bill includes this provision for advance requests.
We believe that the Carter decision intended the legislation to be compassionate, to allow the irremediably ill to have some choice and control in the time and manner of their dying and to provide for dignity in an individual's last days. It is legislation not only about dying but also taking into consideration what an individual wants at the end of their life.
Most of us will know someone with a condition, whether it's an acquaintance, a colleague, a friend, a family member or a distant relative. What do they want as they struggle with an irremediable illness, a chronic condition or unremitting pain? What do we, as compassionate people, want for them?
We strongly urge you to reconsider the bill as it stands and to make changes that will make it a less restrictive bill — one that follows the intention of Carter and allows for dignity for Canadians.
The Chair: Thank you. We'll move to questions, beginning with the deputy chair, Senator Jaffer.
Senator Jaffer: Thank you very much for all your informative presentations.
I have a question on the section on conscientious objection. Mr. Marceau spoke about it, and Dr. Tang may also want to answer. The house, today or yesterday, amended this section to say, for greater certainty, that "nothing in this section compels an individual to provide, or assist in providing, medical assistance in dying.''
Having looked at this, I just do not think this section is good enough. I know you haven't had much time to look at this, but I think the wording should be that "nothing in this bill compels an individual to provide medical assistance in dying.'' May I have your thoughts on that?
Mr. Marceau: Thank you for your question, Senator Jaffer. I touched on that in my remarks. Yes, we are aware of the amendment that was put in the bill by the house committee yesterday.
We're also aware, unless I'm mistaken, that Murray Rankin tried to make an amendment that would go further than what was adopted unanimously in committee. Justice officials mentioned they thought that would go too far.
I urge the committee to look into it further. I do believe that this amendment that we welcome could be further strengthened. Suddenly, there's a place for the federal government to send a very strong signal of leadership on this clause. I do believe, as everybody on this panel mentioned, that the right of the patient to access MAID is important. It's protected now under Carter. The rights of physicians are also mentioned in Carter. It's striking the right balance. We believe there are ways to strike that right balance, and I know you've studied this. Specifically to your point, we believe it could be strengthened.
Senator Jaffer: Imam Hashmi, you and others may want to add to this. When you spoke in the house you spoke about the issue of stigma within faith-based communities. What do you mean? The person obviously will have died, so it's the families who will suffer from stigma. Can you expand on that, please?
Mr. Hashmi: Sure. I think there are different types of attitudes with regard to suicide and to this issue as well. There may be some people in communities who may be comfortable, depending on their family and their values, but there may be others who may not be comfortable. The challenge is with regard to respecting the privacy of the patient; yes, that is important, but at the same time, it is our view that the family should have a role, ideally, in this entire process.
That's why we talk about the end-of-life care team, especially the social worker, who would be able to talk to the patient and dig a little deeper, and if they so want, include the family as well. In that way, hopefully they can come together for a decision that works especially for the patient but for the family members as well.
On the other hand, there can be the scenario where the patient exercises their right to physician-assisted dying, and then afterwards the family members find out that was actually the cause and word gets out. Again, there can be situations where family members may be distressed to find out that's what actually happened.
Senator Plett: I want to continue along the line of the first question raised by Senator Jaffer.
Mr. Worthen, in my opinion, the added provision that the House of Commons Justice Committee put in simply reiterates the fact that no such a stipulation is part of this section but would allow the provinces to make the decision as to what extent they would allow for conscientious objection. Of course, the College of Physicians in Ontario has made it explicitly clear that they will not accept conscientious objection, if it is up to them.
Do you think the amendment is explicit enough to meet what you and many of us would like to see?
Mr. Worthen: Our primary concern is for the patient's well-being. We're also concerned that our doctors, like Dr. Tang, are able to continue to practise medicine. We're very grateful for that amendment that came out yesterday. It certainly is a step in the right direction.
But our concern is that the intention of Parliament is perhaps not clear enough in that amendment. We'd like some clarification, possibly in a whereas clause, that would indicate that it is Parliament's intention that there is no requirement indicated in the legislation that caregivers would be forced to participate in physician-assisted dying, either directly or indirectly.
Senator Plett: "Indirectly'' meaning referral?
Mr. Worthen: Correct. The problem is that it's unclear from that amendment whether Parliament is not entering into that area because it's a provincial jurisdiction or because they don't believe that caregivers' conscience rights should be protected.
From all the people I've spoken to, I think the parliamentarians believe that conscience rights should be protected. I don't see any reason why there would be any harm putting in a whereas clause that would clearly clarify that what is happening here is that Parliament's intention was to create exceptions to the Criminal Code under certain circumstances. Part of those circumstances, we feel, should be that the people who implement these acts are doing so in a voluntary way; in other words, there's no one coercing them or forcing them to do that.
Senator Plett: Dr. Tang, would you comment on how it might impact your work as a psychiatrist if it was mandatory that you refer a patient who requests medical assistance in dying to a willing practitioner?
Dr. Sephora Tang, Psychiatrist, The Ottawa Hospital, Coalition for HealthCARE and Conscience: In my work as a psychiatrist, I deal every day with patients who have either tried to commit suicide or are chronically suicidal, very depressed, suffering immensely. It is my job, as a psychiatrist, that they are able to come to me, in a place that is safe, like the hospital, and I give them hope in a moment when they have lost all hope. They need to see that I remain consistent in this.
It is very difficult for me, as a professional physician and psychiatrist, to say that some of my patients I should be referring to medical aid in dying. When do I make that decision when this would be suitable for this patient and not for others?
With the whole issue of conscientious objection, it's almost as though my professional judgment has been stripped, because they say if you are a conscientious objector, which I am, I must make a referral, no matter what I think, whether I think this might be good for my patient or not, whereas those who do not necessarily have conscientious objections may not need to make this effective referral.
It places me in a very difficult position because I know that if I am to make an effective referral, I will most likely be making it to my colleagues who do not have conscientious objections to this in principle. How do I feel about sending my patient, somebody I know that I could work with if they would be willing to work with me, to somebody that I know may be also the person that would be causing the death of this patient?
I wish to be able to do my work, which I honestly love. It is the most rewarding thing to be able to work with my patients and journey with them and to see them come out of a very dark place. I need time to be able to do that with my patients.
If we do not have legislation that allows me to practise according to my conscience, this time that I have with my patients to work with them will be truncated, and I feel to their detriment and to the detriment of the families and friends of the patient that are left behind, and also to the individual health care professionals and the team members who work with this patient as well.
Senator Joyal: Mr. Worthen, I would like to ask you to extend our greetings to Cardinal Collins. I would have liked to exchange views with him on that subject.
Mr. Worthen: I will.
Senator Joyal: Are you aware of section 31 of the legislation in Quebec?
Mr. Worthen: Yes, I am.
Senator Joyal: If I have listened to you carefully, you don't agree with section 31 of the Quebec bill?
Mr. Worthen: Senator, if I may, one of my concerns in this whole area is the lack of dialogue with organizations like ours in the developing of these types of legislation, whether it's the college or the Quebec government; we are never consulted in these things. It's a shame, because with a little tweaking, we could find the Quebec legislation acceptable. The way it currently reads, it requires that the doctor complete a form, for instance, that is sent in to an administrator.
There are ways for us to work through those things and to make that work, with some collaboration with the Quebec government. If I could meet with the College of Physicians and Surgeons of Ontario and sit down and dialogue with them, I know that through things like transfer of care, for instance, through direct access, which is something that has been endorsed by the Minister of Health federally, that with those things, if I could sit down with the Quebec government, I truly believe we could come up with a combination that would work with our doctors, that would ensure we respect patient requests, and that we also protect conscience rights. I don't mean to belabour this, but one of my major concerns is that we never get the opportunity to sit down and dialogue about these things. I think these things could be resolved more quickly.
Senator Joyal: My other question is the reference that you make to the Carter decision, whereby the Supreme Court has stated quite clearly that no practitioner should be compelled to provide physician-assisted death, and that to me is totally in conformity with section 2(a) of the Charter. The freedom of conscience and religion is protected by a very wide statement that everyone has the following fundamental freedoms. The problem stems with the institution. As you say in your brief, in Ontario I understand there are 110 health care facilities. When a health care facility is in a position of exclusivity in a region, it's a different situation than if you are in Toronto where there are all kinds of care facilities, where a person, according to his or her own faith, could register in such an institution.
But when there is an exclusive position of an institution in a region where it's the only care facility and the government provides funds, as you know, under the Canada Health Act, that is where there's a real problem of accessibility and of the right to have physician-assisted death. I don't know if I am making myself clear enough for you to understand the variation.
As much as we don't want to hurt the conviction of the administrator of the institution, we have to be careful that the service remains available where there are no other health care facilities available.
Mr. Worthen: That's a very good question. We're in the process of a dialogue with various provincial governments on this. I've met privately with officials from the Government of Ontario, and they've indicated there are no such facilities in Ontario. The facility often mentioned is one in Comox, B.C., but when we researched it, we discovered that within 12 months they will have a new secular-based facility there.
The other thing that we need to keep in mind is if you look at the Oregon statistics, the vast majority of people actually want to end their lives at home, those who choose assisted suicide.
I think this is a theoretical problem that can be worked out. All of our facilities are prepared to facilitate transfers for patients. The other expectation is that because people would be aware early on that our facilities are not able to allow this, plans could be put in place earlier as opposed to later to make sure that patient wishes are followed.
I think that on the part of the facilities, there's a tremendous willingness — we can't celebrate this. We can't facilitate it, but at the same time, we can't stop people. So we're prepared to work to help patients transfer, if they tell us where they want to be transferred to. I personally believe that in almost all cases there will be a positive result from the patient's perspective.
[Translation]
Senator McIntyre: Thank you for your remarks. Mr. Marceau, you mentioned that the approach of Bill C-14 is consistent with Quebec's MAID statute and with the statutes in effect in other North American jurisdictions. Certain commentators have indeed noted that the federal MAID bill is very much modelled on the Quebec statute concerning end-of-life care. However, as you know, the federal bill differs from the provincial statute in several respects. You brought up the question of eligibility, and, with you, I would like briefly to compare the eligibility criteria in the Quebec legislation with the criteria contained in the federal bill.
The Quebec statute applies to patients in the end-of-life phase. The federal bill, for its part, uses terminology different from the Quebec bill's. It does not require that the diagnosis be based on the amount of time the patient has remaining, whereas the Quebec statute states that the doctor must inform the patient of the prognosis for his or her illness.
Is the criterion used in Bill C-14 more general, and more flexible, than the criterion contained in the Quebec statute?
Mr. Marceau: I would specify two points. Firstly, when I said that Bill C-14 is consistent with the approach in Quebec and other North American jurisdictions, I meant that it's about people in the end-of-life phase.
This differs from the approaches in Europe — in Belgium, for example — where this is not necessarily the case. If I may, I will quote from our Supreme Court's decision in Carter:
[English]
. . . high-profile cases of assistance in dying in Belgium which would not fall within the parameters suggested in these reasons, such as euthanasia for minors or persons with psychiatric disorders or minor medical conditions. . . .
[Translation]
That is what I meant, in terms of general approach.
As for the exact terminology, you are a legislator; I was one too for a while. As you know, the following passage has not simply been cut and pasted:
(d) their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining.
As far as I'm concerned, the situation in Quebec is very similar to that. The wording is different, and a jurist or legislator would see some differences, but the philosophy seems very similar to me, in both cases. The federal bill runs along the same lines.
Senator McIntyre: For the moment, the bill is silent about the conscience-related rights of physicians, nurses and pharmacists.
I notice, as well, that you're encouraged that the bill does not force physicians to refer their patients directly. Would you care to develop that point further?
Mr. Marceau: Various approaches were proposed, and I will cite two of them. The Canadian Medical Association referred to a central information and counselling service that would address that issue. We, at CIJA, quite like the approach of Dr. Herschl Berman, who is both an internal medicine and palliative care specialist at the Temmy Latner Centre for Palliative Care in Toronto, and a professor at the University of Toronto. If I may, I would like to quote him, because I find his remarks very pertinent. But, since time is limited, I will send you the quote so you can forward it to the committee members.
Senator Dagenais: I would like to continue along the same lines with regard to Bill C-14, and, in particular, the minimum age of 18. Are you not worried that this aspect could give rise to protracted and painful judicial and constitutional challenges? In this regard, do you not think that we should take advantage of the current debate to make more amendments, rather than initiating yet another policy debate, in the wake of another Supreme Court judgment?
Mr. Marceau: Given the delicate nature of this debate, and as someone who is not a betting man, I'm prepared to bet an old two-dollar bill that, in any event, the bill passed by this Parliament will make its way to the court. A challenge-proof bill is not going to happen, however much that's the objective.
Secondly, as the saying goes —
[English]
Hard cases make bad law.
[Translation]
Thus, anything related to MAID for people under the age of 18 is going to be very sensitive, because it involves someone who will be continuing to suffer and who, if they were a few months older, would be able to exercise the right. There is no easy solution here. I have to consider what it's like to be a parent called upon to help his or her child make such a decision. What position would a parent take in such a matter? Several people at this table are parents. How would you react if your 15-, 16- or 17-year-old child, who is not yet able to vote, wanted assistance in dying? Does the child have the kind of capacity, education and maturity to make the decision? It is impossible to have a hard and fast position.
This was alluded to in the three main points; internally, it was the most difficult. We opted for caution when we decided that one needs to be an adult to make such a decision, given the irreversible consequences.
Senator Dagenais: Young people do vote at the age of 16.
Mr. Marceau: Is that so?
Senator Dagenais: Well, it will eventually be the case, but that will be the subject of another debate.
Mr. Marceau: Indeed, and that will be a pleasure.
[English]
Senator Batters: I want to start out by saying, Dr. Tang, that I really appreciate the fact that you talked about hope today, because it's a word that I often use, especially regarding mental illness, and it's a word we've heard too infrequently in our committee hearings about this topic. So thank you for that. I hope that whatever happens in these particular hearings and with this legislation going through, we're able to achieve a result that will allow you to have the conscience protection that you are seeking.
For Mr. Worthen and Mr. Marceau — first of all, Mr. Marceau, I was trying to place you, and I think I have. You used to be a member of Parliament, right?
Mr. Marceau: Yes, in a previous life.
Senator Batters: For the Bloc Québécois?
Mr. Marceau: Yes.
Senator Batters: Welcome back to Parliament.
Mr. Marceau: Thank you.
Senator Batters: Thank you for your comment that you earlier made regarding the brand new amendment that the House of Commons has made on this particular bill regarding conscience protection, but really not providing a lot of protection thus far; and for your important comment that you made that that would leave things open, potentially, for provinces and regulatory bodies and that sort of thing, so we need to have a more comprehensive conscience protection.
I wanted to get Mr. Worthen's further impressions of that to indicate what he would be looking for specifically. You briefly commented on it before, but if there's something that you can further elaborate on regarding conscience protection, that it's just a small amount of protection that's been provided by this new amendment, what further protection would you be looking for?
Mr. Worthen: Thank you very much for the opportunity to answer the question. We have a couple of precedents — we have medical marijuana and we also have the Civil Marriage Act — that provide us with examples of where the federal government is active and at the same time is also occupying a bit of provincial jurisdiction there in matters of national importance.
We're grateful for what's happened at the Commons Justice Committee, but I think the key is for it to be made clear to everyone that it is the opinion, the will of Parliament, that conscience rights, guaranteed in the Constitution, apply to this case and should be applicable. Parliament is the one, after all, who is carving out this section of the Criminal Code of Canada.
So it would seem to me that if Parliament were to carve out a section and it allows people to do certain things under certain conditions, then to say that those people can only do those things if they are doing them voluntarily, it would seem to me that could be incorporated into the legislation, that no one will be required to do anything under this carve- out that is not done in a voluntary way.
The other thing is that the amendment leaves some question in my mind as to whether Parliament is saying, "We're not getting involved in this because we don't want to tread on provincial jurisdiction,'' or they're not getting involved in it because they don't believe in it. I think that if we were to clearly give Parliament's intention that conscience rights are there, they're applicable to this situation, they include both directly and indirectly participating, and that Parliament is essentially providing exceptions from the Criminal Code under these circumstances and that these exceptions only are in place when the person is doing it in a voluntary way, those would be my suggestions for us to proceed.
I get the sense from talking to parliamentarians that many are very supportive of conscience protection. I can assure you that there is no conflict with responding to patient wishes. There are some ideas that you have, that the Canadian Medical Association has, and we have some ideas. All of those put together, we surely can find a way.
The Supreme Court asked that these interests be reconciled. They didn't say they would be wrecked. There's no need for us to compromise anything here. We can support patient wishes for end of life and support conscientious objection. We're very good, as Canadians, at finding ways through things, but it requires dialogue, collaboration and working together. I believe we can do it.
Senator Frum: My question falls directly on this point. I was intrigued, Dr. Tang, when you spoke about how it's not just that you yourself would have a conscientious objection but that if you are then asked by your patient to make a referral, then you have a choice to make about who and how to make that referral. That, of course, is the dilemma right there.
Within the medical system we have now, you cannot deny a patient a referral. It doesn't apply to your area of medicine anyway, because psychiatric cases are not covered by this law, but generally speaking in the medical profession, how would you handle that? How do you handle the referral problem?
Dr. Tang: I'll make an analogy to medical marijuana use. If the patient were to come to me requesting medical marijuana and I don't believe that there's any psychiatric indication for using medical marijuana because I think it would make the patient's situation worse, I can say to them, "You are free to seek medical marijuana from a provider of your choice. I will continue to provide care for you in all other areas, but you are very free to seek care from somebody else who believes this might be good for you. I can also help you to transfer the medical files to this other provider as well. I have no issues with that.''
But for me to say, "I'm going to make a referral for you specifically for this instance,'' it's almost like I'm endorsing this. Also, with the referral I have to follow up on the referral to make sure that things went as expected.
So that places me in a very difficult position. I understand the freedom of patients to access the services that they would like, but for this particular issue it would be very difficult.
Senator Frum: But patients generally can't access a specialist without a referral.
Dr. Tang: So I think with the discussions that we've been having, even among the members of this panel, situations or solutions have been proposed where there would not necessarily need to be a referral for this intervention. That is the point that we're trying to get across, that we would like to be able to work with the provinces and institutions to be able to provide this service for patients who would like it without needing to have this effective referral.
Mr. Worthen: If I could add to that. We have a specific proposal that gives the patient the opportunity to decide how they would like to handle it. If the patient wants to stay with a physician, even though the physician has a conscientious objection, then what we're proposing is a direct-access model so that the patient is able to directly access the assessment for assisted death.
This is consistent with what the federal Minister of Health is trying to set up with the provinces and which many health authorities are open to doing. If the patient is too ill to access this directly on their own — and normally that would happen if the patient were in hospital — then transfer of care, where the patient basically gets a whole new doctor, and someone like Sephora, then, would have the dialogue with the patient; the patient decides they would like a transfer of care, and then someone at the hospital facilitates that.
Senator Frum: I presume what will happen is there will be certain practitioners who will become known for this and the public will know who they are and just access them directly. Is that what you anticipate?
Mr. Worthen: I anticipate that, but it's in our interest to make sure that the patients are looked after and that patients' wishes are respected. So we feel that there's a need to ensure that the Minister of Health does what she has agreed to do, which is to set these processes up, so that people like Sephora won't be in a position of worrying about a patient who is caught in limbo. No one should be caught in limbo. There should be systems in place so that this is all dealt with.
Senator Joyal: I have a question for Ms. Ng. You've not made any comment on the time frame that the preamble of the bill mentions in relation to advance consent, mature minors and mentally ill people. You have expressed no concern about that.
[Translation]
As for you, Mr. Marceau, I am not sure whether you are in a position to comment on the subject.
[English]
Ms. Ng: In five minutes, I had to pick and choose what to emphasize here.
In a previous submission, we had suggested that the age of consent be 18, but it's not as black and white as all that because we are open to considering, in cases of mature minors, what other options there might be, what other supports might be in place.
I'm very mindful of the case of Robert Latimer and his daughter in Saskatchewan many years ago. No parent wants to be in a position to watch their child suffer, but no parent wants to be in a position to make any decisions about their child living or dying. It's one of those things where, Mr. Marceau, you said that it's a very grey area. There are no right answers or wrong answers. I think it's very individual. This is one of those areas where we need further study and consultation.
The Chair: Thank you, all. We've run out of time. We've gone a little bit over time, but we certainly appreciate you all being here and assisting us in our consideration of this very important piece of legislation.
Members, at 10:30 tomorrow morning, we're back in room 160. From 12:45 to 2:45, we have set aside that time for in camera to write our report. Meeting adjourned.
(The committee adjourned.)