Physician-Assisted Dying Committee on Jan. 28th, 2016

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie (Senator, Nova Scotia (Annapolis Valley - Hants), C)]

Colleagues, we have a quorum. I'm calling the meeting to order.

I want to welcome you to the seventh meeting of the Special Joint Committee on Physician-Assisted dying.

I'm Kelvin Ogilvie, a senator for Nova Scotia, co-chair of the committee along with my colleague Mr. Robert Oliphant, member of Parliament for Don Valley West.

Welcome to this evening's meeting. In the first hour, we have three witness groups. Appearing as an individual is the Honourable Steven Fletcher. Appearing by video conference from Winnipeg, Manitoba, are Mr. Dean Richert and Ms. Rhonda Wiebe, from the Council of Canadians with Disabilities. Also appearing by video conference, from Waterloo, Ontario, from Dying With Dignity Canada, is Ms. Linda Jarrett, who is a member of the disability advisory council.

Welcome to all of you.

I remind you that you have approximately 10 minutes for your presentations. The council will share their total time. I will also remind everybody that the witnesses, our panel members, have a total of five minutes for the question and the answer to the question.

In Senate meetings, I always call for the video conferences first in case there are electronic glitches that occur, and since we're all electronified while here, I'm going to start with the video conference.

I would invite Ms. Jarrett to present first.

[Linda Jarrett, Member, Disability Advisory Council, Dying With Dignity Canada]

First of all, I would like to thank you for the opportunity to appear before this council. I do appreciate the fact that I can speak.

My name is Linda Jarrett. I am 67 years old. I am a wife, mother, grandmother, mother-in-law obviously, and 17 years ago I was diagnosed with secondary progressive multiple sclerosis. At the time, I truly felt blessed, in a way, that I was diagnosed at such a late age of 50. Unlike so many people diagnosed with MS in their early 20s and 30s, I have had a chance to live a very active life. I've had a wonderful career as a teacher and have been able to actively take part in the raising of our two children.

I am blessed in that way, but I am also cursed in that multiple sclerosis is a very insidious disease. In my case, with secondary progressive MS, there has been no cause found for MS, and a cure certainly has not been indicated in the foreseeable future, especially for somebody with my version of MS.

As a result of that diagnosis 17 years ago, in the last five or six years I started thinking about what my life was going to be like. I personally do not want to spend the final years of my life in a long-term care facility, no matter how lovely such a place might be, being taken care of 24-7. That's when I started looking into what my options could be.

Now, back six or seven years ago, the options were that I could hasten my own death while I was still physically capable of doing so, and not implicating any members of my family or friends. With the introduction of the concept of physician-assisted dying, and with that incredible announcement last February, I suddenly realized that I could still love the life I have, knowing that there could be a solution to avoid the end of life I don't want.

In any case, that's just a little bit of background as to where I am now, today, presenting to you as a member of the disability advisory council to Dying With Dignity Canada. We are a group of individuals with disabilities that compromise our ability to take part in the normal routines of daily life. Members of our disability advisory council include social activist Margaret Birrell; a former palliative care and public health doctor, Dr. Greg Robinson; and a former president of the Canadian National Institute for the Blind, Jim Sanders.

In 2014, Dying With Dignity Canada commissioned an Ipsos Reid poll that included a statistically significant sample of people with disabilities. These people were those who answered the following question: Are you permanently or severely disabled such that you cannot take part in the basic activities of daily living without assistance?

An amazing 84% of those people with disabilities answered this question: As long as there are strong safeguards in place, how much do you agree or disagree that a doctor should be able to help someone end their life if the person is a competent adult who is terminally ill, suffering unbearably and repeatedly asks for assistance to die?

I can't emphasize enough that it was 84% of the disabled participants in that survey that agreed or strongly agreed with the right to physician-assisted dying. That poll was valid plus or minus 11.5%. Another poll done in the U.K. by YouGov had a significantly larger range of individuals with disabilities being polled, and 79% of those with disabilities support or strongly support the right to physician-assisted dying. They answered this question positively: “Whether or not you would want the choice for yourself, to what extent do you support or oppose the legislation of assisted dying for adults of sound mind with a terminal illness?”

Our disability advisory council helped to inform and supports the seven principles for legislation outlined by Dying With Dignity Canada, and I do hope that handout was provided to you ahead of time. I am going to refer to a couple of points on it, but the handouts, which were sent ahead of today's meeting, you can certainly refer to later.

I'd like to flag the second principle, which concerns “advance consent”. The members of our council believe that as with other major life-ending decisions, we should have the ability to make our decisions known now when we are competent and hopefully have them carried out later when possibly we will not be. I myself have a “do not resuscitate” order in place because I know full well that I do not wish to be resuscitated should some life-ending event happen to me. What if I were to have a stroke and be completely paralysed and unable to communicate? In that situation, I know that I would want assistance to die, and I believe I should be able to make that request now while I'm competent and have it carried out later when perhaps I will not be.

To ensure that physician-assisted dying is provided only to patients who truly want it, we support additional procedures that are not currently part of end-of-life medical care. We do this with caution, knowing that any additional procedures can also sometimes become a barrier to access. For example, the two procedures that we endorse are that two physicians verify that there has been free and informed consent for physician-assisted dying and that every case be reviewed after the patient has died and aggregate data be compiled and made available to the public.

As individuals who happen to live with disabilities, we are aware that resources and support are sometimes lacking, and accordingly in our fleshed-out policy on physician-assisted dying, we include a statement noting that all people, including those with disabilities, should have the support and resources necessary to live their life to its fullest capacity.

We accept that a person can be situationally vulnerable because of factors that do not directly relate to their disabilities or to their disease. Factors such as isolation and financial distress are sometimes more likely to be encountered by people with disabilities. Accordingly we believe that physicians should be trained to assess situational vulnerabilities not just for physician-assisted dying but for all end-of-life decisions.

The members of our disability advisory council strongly feel that the law needs to strike a balance to protect vulnerable people from having an assisted death they don't really want and, from my point of view and our council's point of view, to ensure access to assisted death for those who do have an enduring wish for it.

To this end, we propose two further key principles. The first is that doctors, while having the right not to administer or prescribe life-ending medication, must be willing to provide information and transfer the care of patients who seek an assisted death, so that patients are not abandoned. We don't want someone who is desperately ill, with great pain, being given a website or a phone number or the Yellow Pages and being told to find another doctor.

We further believe that tax-funded institutions, whether they be hospitals, hospices, or long-term care facilities, must provide assisted dying on their premises to patients who request it. For example, some of our members in British Columbia are concerned that they may need emergency medical care and perhaps will be transferred to one of the Catholic hospitals in that province. They don't want to give up their right to an assisted death just because the hospital they have been transferred to has a historical association with a particular religious viewpoint on assisted dying.

It is notable that some of the most prominent proponents of physician-assisted dying are the disabled: Kay Carter, Sue Rodriguez, Gloria Taylor, and Joe Arvay, the lead counsel for the plaintiffs before the Supreme Court just over a year ago, who gave us the right—possibly—to physician-assisted dying. He did this from his wheelchair.

Our diseases and disabilities have robbed us of much, and I ask you, do not add to this burden by compromising our choices and our autonomy. I will repeat again that 85% of people with disabilities said, in a valid, accepted poll, that they would strongly support the idea of physician-assisted dying.

Please do not allow us to be represented as opposing this compassionate and humane choice. Again, I emphasize that it is a choice. No one is asking to be put to death against their will, but please allow those of us in the disabled community the right to access our choice for physician-assisted dying.

Thank you so much for listening to my babbling.

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie]

Thank you, Ms. Jarrett.

I'm now going to turn to the Council of Canadians with Disabilities.

You are on the air.

[Rhonda Wiebe, Co-Chair, Ending of Life Ethics Committee, Council of Canadians with Disabilities]

Thank you, Mr. Chair and committee members.

My name is Rhonda Wiebe, and I am here with Dean Richert. We are the co-chairs of the ending of life ethics committee for the Council of Canadians with Disabilities.

The Council of Canadians with Disabilities, or CCD, is a national human rights organization of people with disabilities who are working for an inclusive and accessible Canada. The CCD has deep roots in advocating for equality, human rights, citizenship, self-representation, partnership, and barrier removal. Its rich history includes its representation of the concerns of Canadians with disabilities in the Supreme Court of Canada and working to ensure equal rights in access to education, transportation, and other issues, including the one that is before us today.

Within the CCD structure, the ending of life ethics committee seeks to focus attention on and prevent private and societal actions that make people with disabilities die prematurely due to inequalities in health care, societal neglect, social prejudices rooted in fear, and negative perceptions about life with a disability.

I have worked for over two decades as a disability rights advocate at the local, provincial, national, and international levels. I also spent five years as a researcher examining end-of-life issues at the faculty of medicine at the University of Manitoba, but most importantly, I am also someone who has the direct experience of living with a life-limiting and sometimes fatal medical condition that affects almost all my vital organs and has left me with considerable vision loss and some mobility issues.

The CCD knows that adjusting to living with disability is hard. I have had 20 surgeries. Each time I undergo one, I have doubts about whether I will benefit or lose capacity. When I do lose capacity to see, to move, to dress myself, to walk, and to work, I have to adjust not only the perception others have of me but also my perception of myself. Although my experience is personal, it is also typical of those the CCD represents. It is something that people with disabilities have in common.

A few years back, I facilitated a support group for young people who suddenly acquired disability through accidents or onset of disease. In the first two years after that happened to them, each one of them experienced moments of suicidal ideation. Every person living with disability knows these dark places.

We are encouraged to hear that Wanda Morris, of Dying With Dignity, has acknowledged that her organization will not assist those who have recently acquired a disability to seek death. We know that with the right supports we can go on to have lives that, although they are different from what we once thought they would be, are nevertheless full lives. Steven Fletcher, former MP from Manitoba, also has acknowledged that if he had had this option, he might have ended his life shortly after his accident. It took him several years to find a new vision for himself, one that included being a parliamentarian.

These common experiences have led the CCD to carefully consider our response to the recent Supreme Court of Canada decision to allow physician-assisted dying. We come to you today asking you to consider three points as you begin the process of laying out a framework. All our points grow not only from our expertise as an organization but also from the Supreme Court's concern that protection of the vulnerable is a priority. The court determined that a safeguard system that imposed “stringent limits that are scrupulously monitored and enforced” would achieve a balance that would both enable access by patients to physician-assisted dying and protect those who are vulnerable and may be induced to commit suicide.

Vulnerability and suffering often go hand in hand. A review of clinical research on suicide prevention and vulnerability within the health care context indicates a wide range of factors associated with suffering that can lead to suicidal ideation and the request for physician-assisted dying. In our brief, we've listed factors that increase the risk of suicidal ideation, as put together by the American Psychiatric Association. We won't go into them now.

The three points we want to bring forward for your consideration are born out of our concerns regarding vulnerability.

[Dean Richert, Co-Chair, Ending of Life Ethics Committee, Council of Canadians with Disabilities]

First, CCD is requesting that a vulnerability assessment be mandated in order to ensure that a person requesting physician-assisted dying meets the criteria of that request. In Carter, the court acknowledged that any set of safeguards must recognize the complex and sometimes subtle and subconscious factors related to a request for physician-assisted dying. This confirms, for us, the requirement for a vulnerability, informed consent, and capacity assessment process. Not being vulnerable to inducement is a criterion.

With respect to informed consent, it demands that individuals requesting physician-assisted dying must have information regarding the supports in the community that deal with issues related to poverty, isolation, discrimination, and devaluation. Our question is whether or not a family physician can provide all of this information. It may require someone more qualified to inform the individual of these supports. For CCD, providing such information is highly relevant in determining whether a person may be vulnerable to inducement.

As stated before, it is our understanding that Dying With Dignity has indicated that they agree with CCD that persons newly diagnosed with a disability are vulnerable, and should not be permitted to have assisted dying performed. It is also our understanding, and important to note, that two national polls, one from the Canadian Association of Retired Persons, just recently put out, and the other from the external panel, when they dealt with the issue of physician-assisted dying, indicated that a majority of Canadians do not support physician-assisted dying without a prior review. With respect to people with mental health issues, very few Canadians believe physician-assisted death is a solution.

Secondly, we recommend a prior review board process. The paperwork that is necessary—for example, the vulnerability assessment, capacity and competency, along with the assessments of two physicians—would be submitted with the application by a patient requesting physician-assisted dying to a review board. A review board or a review panel, not a physician, would make the ultimate determination on whether a request for physician-assisted dying will be given.

We submit that the review panel should be chaired by a federally appointed judge to ensure consistency in reasons for judgments and facilitate Canada-wide standards. This is important. This is a Canada-wide standard. It should not be left up to individual doctors, nor individual provinces, to determine what the criteria are that have been articulated by the Supreme Court of Canada.

[Rhonda Wiebe]

Finally, CCD puts forth the need to establish means by which all Canadians who need it will be provided with adequate palliative care.

Canada now finds itself in the bizarre situation where we have the right as citizens to ask a physician to help us end our lives, but we don't have the legal impetus for the right to palliative care. It is not covered under the Canada Health Act, and it is acknowledged to be available to only a minority of Canadians who require it. It is unconscionable that people should choose to die through physician-assisted dying because they have no choice, due to a lack of palliative care.

Yes, palliative care will require a national political will, health care supports, and dollars, but let's not base our health care strategies on what's cheaper instead of on what is the right thing to do.

The Honourable Sharon Carstairs, in her 2010 Senate report “Raising the Bar: A Roadmap for the Future of Palliative Care in Canada”, recommended the establishment of a Canada-wide strategy on palliative care as a partnership between the federal, provincial, and territorial governments and the community, which would pave the way for consistent minimum standards and benchmarks for nationally available palliative care services. She recommended the establishment of a Canadian palliative care capacity-building fund and also recommended that the provinces ensure that palliative care is covered under all provincial and territorial health insurance plans. CCD highly endorses Mrs. Carstairs' recommendations.

To sum up, CCD asserts that there are many social, economic, and other environmental factors that increase the vulnerability of persons with disabilities, especially the newly disabled. Careful scrutiny must take place to ensure that there aren't other remedies, besides death, that will lessen the suffering and indignity of these people.

Second, a review process that is easily accessible but does not necessarily require an oral hearing and is expedited quickly, as David Baker has articulated, say within 45 days from application to decision, is a safeguard that protects both doctors and patients.

Finally, CCD acknowledges that the crossover between the request for physician-assisted dying and the lack of access to palliative care is clear. There must be appropriate options so that real choices can be made available to all Canadians who want to have a good death.

Thank you.

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie]

Thank you very much.

I'm now going to invite the Honourable Steven Fletcher to present.

[Steven Fletcher, As an Individual]

Thank you very much.

I am happy to be here this evening.

As many parliamentarians here, including the co-chair, will attest, none of us ever think we're going to be former parliamentarians—

[Voices]

Oh, oh!

[Steven Fletcher]

—but yet here we are, so I am very grateful to have the opportunity to speak in front of this group and give you my two cents on legislation that's really important. I'm going to go really fast, because there's a lot of ground to cover in a short time.

First, when I was 23, I had everything going for me. I had just graduated from engineering. I was driving to a gold mine in northern Manitoba. I had a beautiful girlfriend. I was athletic. All that stuff was going well, and boom, I hit a moose with my car. The moose went through the windshield, the car went into the ditch, and it was a long time before I got to a hospital, as this was in 1996, before cellphones.

I was 23, and in an instant, I found myself completely paralyzed from the neck down. What does that mean? It means I cannot move below the neck. I do not feel a sense of touch, pain, or pleasure. I have no control of my bodily functions. I obviously have to rely on caregiving 24 hours a day, seven days a week, for the rest of my life.

I was told that if I were to survive, I would be in an institution. That's not what you want to hear. Mind you, after I was elected I did go back and say, “I don't think you meant the Parliament of Canada.”

[Voices]

Oh, oh!

[Steven Fletcher]

I was completely paralyzed and intubated. This is very important. I had tubes in my nose going to my lungs, and because my lungs had essentially collapsed—I didn't have a diaphragm helping me breathe like everyone else—I was on a machine for about three months, fully conscious, but getting phlegm sucked out of my lungs minute after minute, hour after hour, day after day, week after week, month after month.

There is no pain medication that can deal with that. It is terrifying. It is impossible to sleep. You think you're going to go mad. You can't talk to anyone. You're experiencing massive amounts of pain, such that your head wants to explode, but you can't do a thing about it. I call it “well-intentioned torture”. That's what they were doing.

When I was finally able to breathe and speak, two things happened. I had my family gather around. I told my mom and my dad—my dad is with me tonight—and my brother and sister that I loved them more than anything. Then I asked them to get my lawyer. I did not want to ever go through that again. The lawyer advised me that what I was asking was probably illegal, but I wanted it written down anyway, just in case. That was 20 years ago.

Let's fast forward. Sue Rodriguez is an example of a person who all the resources in the world cannot help at the end. I know that. I had experienced that. I was going to get better, and I was 23. I didn't believe the doctor's prognosis anyway, until much later, but Sue Rodriguez was going to drown, hopeless, in pain and in terror. She was denied what everyone in this room would want: an end to the suffering.

I've long been an advocate of the empowerment of the individual, personal autonomy, and having the government stay out people's lives as much as possible. I've written extensively on this issue. I've written articles across this country. Even The Economist magazine has asked for submissions. In fact, I have a book here called Master of My Fate. I can't distribute it because it's not translated, but you will find it in your mailboxes. It goes through the whole political saga.

I will skip that other than to say that you will have in front of you three private members' bills, two that I introduced and one that Nancy Ruth and Larry Campbell introduced in the Senate. The first bill deals with amending the Criminal Code. It's about five pages, and it has some of the safeguards that you would like to consider, I think. The second bill includes a panel, or some sort of review board, to check for best practices. After five years, say, it would report to Parliament. It would collect empirical evidence to find out why people are making the requests and what we can do to empower people so that they choose life. But we also have to recognize that sometimes people will choose death. In fact the Hippocratic oath recognizes that, if you read it.

The response to the bills in Parliament was deafeningly quiet. Harold's laughing, because he knows that everyone was.... It wasn't a good place to be—except all the media, virtually across the country, left-wing and right-wing, accepted it; talk-show radio, TV shows. It turned out that over 80% of Canadians supported physician-assisted death, even in the disabled community. The response I received through email was overwhelming. I had thousands of emails from people telling me their most personal details.

Let's go to today. What is central in all of this is that the individual must be a Canadian or permanent resident, must be 18 or older, and must be cognitive. Don't make it complicated. That's it. Those are the criteria. All you have to do is cut and paste that part of the decision into the Criminal Code.

I agree completely with CCD that we should provide the resources, and increase the resources, so that people do choose life, but again, there are situations where all the resources in the world won't matter. I think that's why a lot of people in the disabled community at large do support physician-assisted death. But I would ask those in the disabled community with reservations about this to be more empathetic to the people who are suffering. Having someone suffer, starving themselves to death, or being in pain or in terrible suffering, down the hall or down the street at the seniors residence or in a hospital or at home, having them live in pain and terror—it doesn't make my life better as a Canadian with a disability. It just makes me sad.

You have to recognize that people suffer, and to impose our view or for any group to impose any view on anyone else is un-Canadian and, I would say, unconstitutional, because doing so infringes on freedom, liberty, and the ability for self-determination.

With regard to doctors, I've heard a lot of testimony from doctors on how this is going to be tough love.

To the doctors and the medical profession, I say be professional, be tough. It's not about you. It's not about the medical profession. It's about the individual and his or her choices. If the person is a cognitive adult, why on earth would we impose our views on what their quality of life is on them? I'm not talking about someone with a bad hair day. There is obviously going to have to be some reason, and common sense needs to be applied.

Having the committee bring forward legislation really makes me concerned, because anything that comes from Ottawa is bound to fail when it comes to the cross-jurisdictional issues of criminal law and health care. I would suggest that the committee stay as close to the Carter decision as possible and allow the provinces to determine their own fates. That is what's happening already with Quebec. In fact, Quebec has to go further. They have to amend the law to provide for more circumstances.

Last, on the issue of advance care directives, after this four-month period is up, I think there will be a paradigm shift in what is allowed in a living [Technical difficulty—Editor]. I think people need to be empowered to say that in 20 years from now if they have dementia or these things or they end up in a terrible car accident or whatever, and they so choose, then they would not want to live. I can go on. I'll give you the book.

Ladies and gentlemen, Invictus, the famous poem, says, “I am the master of my fate: I am the captain of my soul”. Let's move forward with hope, compassion, empathy, and mercy.

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie]

Thank you very much.

Madam Shanahan.

[Brenda Shanahan, Liberal, Châteauguay—Lacolle, QC]

Thank you very much, Mr. Chairman.

I thank all the witnesses for their very moving testimony here this evening. It brings to mind the kinds of concepts we're talking about. Autonomy, competency, even the right of refusal are concepts that we in the abled community take for granted.

I address my question to the Hon. Mr. Fletcher.

I wonder if you can speak more on what those concepts are, what those words mean in the disabled community.

[Steven Fletcher]

The reason people have taken their lives before the time has come—people from Dying With Dignity named some high-profile cases—is that they are terrified about what might happen. If they lose the ability to travel to Switzerland or administer a fatal dose or whatever, they will be trapped in their bodies, miserable forever.

What the Supreme Court has said is “we hear that“. They recognized that people are ending their lives early due to that, and that the law as it is was causing people to suffer. That was part of the testimony. The Government of Canada agreed to both those points.

What this legislation will do—or the lack of it, because you don't even need legislation, in my view—is provide comfort to people like Sue Rodriguez or like me when I was 23. What if I had been 53 or 73? See, things change. I would say that we need to be empathetic, not just as persons with disabilities looking out but obviously the other way. So much depends on where you are in your life, what your values are, what your religion is, and your age.

For Ottawa to have some kind of cookie-cutter solution or a panel to decide this, my goodness, you might as well keep the law the way it is, because the end result would be the same. People would not be able to access physician-assisted death, they would take actions on their own, and they would suffer in the interim.

[Brenda Shanahan, Liberal, Châteauguay—Lacolle, QC]

Thank you.

I have a question for the Council of Canadians with Disabilities. Have you thought about accessibility? Is that a concern in the measures you have proposed?

[Dean Richert]

Mr. Chair, if I may, I will respond to that question.

Yes, we have thought about it, and that's the reason why we were thinking about something like a consent and capacity board, which is also in Ontario, that has some access issues around it that allow a person to have almost immediate access, within 24 hours. That's why we also said in our submission and in our brief that it could be without an oral hearing. It could be done by affidavit or it could be done by simply submitting the paperwork from your physician and two physicians. A physician can do the vulnerability assessment. They would submit it to a panel. It would be, if I recall correctly, like a Dr. Low situation. There could be a turnaround in a very short period of time, where no one has to appear in front of a panel.

We have thought about access, and access is a real issue. Listen, the CCD is very aware that people need access. For us, accessibility has been a concern throughout our history as the CCD and this is also a place where we want to make sure that there is quick access, but we also realize that we don't want to put doctors in a position of having to make the decision. If the doctor you are going to, your family physician, is one who has a conscientious objection to facilitating or preparing the documents, this leaves them still available to be with the person who is their patient, to continue on, and to be close to them.

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie]

Thank you very much.

I will now turn to Ms. Harder.

[Rachael Thomas, Conservative, Lethbridge, AB]

My first question is for Linda.

Linda, I hope you can clarify for me the question that was asked in the Ipsos Reid poll. Do you have the exact question there?

[Linda Jarrett]

I do. The question on the Ipsos Reid poll was as follows: “As long as there are strong safeguards in place, how much do you agree or disagree that a doctor should be able to help someone end their life if the person is a competent adult who is terminally ill, suffering unbearably and repeatedly asks for assistance to die?”

[Rachael Thomas, Conservative, Lethbridge, AB]

Just help me understand what people's response options were to that question.

[Linda Jarrett]

From the information I was given, 85% of people in that category, meaning people with disabilities, agreed or strongly agreed to the right to physician-assisted dying. That was the information I was given.

[Rachael Thomas, Conservative, Lethbridge, AB]

Thank you.

[Linda Jarrett]

You're welcome.

[Rachael Thomas, Conservative, Lethbridge, AB]

I have another question here, and it's for the council.

Dean and Rhonda, your organization has expressed that it disagrees, actually, with the findings of the Ipsos poll. I'm wondering if you can very quickly address the concern you have with regard to the findings of this poll.