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Jocelyn Downie
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Jocelyn Downie
2021-06-21 18:35
Thank you and good evening. Thank you for the invitation to be here.
As you heard, I'm Jocelyn Downie. I am the Palmer chair in public policy and law at Dalhousie University. I've been a legal academic researching and writing on medical assistance in dying for a long time, and have been intimately involved in many of the prior processes relating to the topics that are before you as a committee. I offer my comments tonight against that backdrop.
On your process, for both phases of your work, I have two hopes and challenges to offer. My first hope and challenge is that you build on the work done by those who have gone before. This includes legislative committees, court cases, expert panels and official data collectors. I hope every member of the committee will read all of these reports and decisions. I don't say that lightly. I appreciate that it's a lot, but it's worth it. You will then understand how and why we got here and have a good foundation to consider the questions about how we should move forward. Don't reinvent the wheel or rely on what other people tell you these primary sources said. This is especially true of the Carter decision.
My second hope and challenge is that you deliberately and explicitly make evidence-informed recommendations using rigorous standards of evidence. This means following the pyramid of reliability, which is appended to the opening statement that I sent to the clerk. It also means looking to the considerable body of peer-reviewed and court-tested evidence about MAID in Canada. There is no need or justification to make recommendations based on anecdotes or untested narratives. Where there are gaps in reliable evidence, don't fill those gaps with unreliable evidence and use that to inform your recommendations. Rather, call for and facilitate more research.
Now, on the substance of what you have set out for phase one, I have seven points to get on the table and into the record before we get into what you want to talk about. For obvious reasons, I will limit myself to issues of federal jurisdiction.
First, there has not been a slippery slope. The recent change to the eligibility criteria merely returns us to the Supreme Court's Carter boundaries.
Second, as you heard from Health Canada two weeks ago, the number of cases is going up, but that's what you would expect when something becomes legal, awareness goes up, access goes up, stigma goes down and the numbers go up. It's not a bad thing.
Third, the high-quality data about the involvement of and access to palliative care and social and economic vulnerability do not support the concerns raised about these during legislative debates. The data reflect a similar phenomenon to that observed in other permissive jurisdictions. Those who access MAID are disproportionately privileged as opposed to socially or economically vulnerable.
Fourth, several problems with Bill C-14 became evident through the period of implementation and were corrected by Bill C-7—notably, reducing the number of witnesses, removing the 10-day waiting period and introducing what's known as the final consent waiver. The most egregious unconstitutionality was remedied by removing “reasonably foreseeable” as an eligibility criterion.
Fifth, please do not misunderstand or misstate the meaning of “natural death has become reasonably foreseeable”. This phrase did not and does not mean “terminally ill” or “imminently dying”. Rather, as the Minister of Justice himself has explicitly confirmed, it means what it had come to be understood to mean in clinical practice, and that is, most definitely, not terminally ill or imminently dying. Rather, it means “with sufficient temporal proximity”—which could be years—or “on a predictable trajectory”—which could mean the diagnosis with ALS.
Sixth, MAID in prisons needs and deserves your attention during phase one. I hope you will call as witnesses Correctional Service Canada, the correctional investigator of Canada, University of Calgary professor Jessica Shaw, and Dalhousie University professor Adelina Iftene. They can explain the problems and suggest—or receive, in the case of CSC—solutions.
Finally, I hope you will recommend that the federal government use its convening power and the power of the purse to encourage, catalyze and facilitate essential research. Our courts and policy-makers benefited enormously from the unique Dutch approach to MAID research, most notably their five-year death certificate studies. We could pay it forward to other countries and avoid having our policy debates go in endless circles if we did such research ourselves. That means government-commissioned and -funded, yet independently conducted research. Without a doubt there are challenges—the variability in our death certificates, for one—but they are not insurmountable.
Thank you for your attention, and I look forward to your questions and comments.
Trudo Lemmens
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Trudo Lemmens
2021-06-21 18:40
Chairs and members of the committee, I appreciate the invitation to present today as part of this parliamentary review.
In this polarized debate, where some frame all concerns about MAID as religion based, let me first firmly state that my approach is based on human rights and with respect for the equal rights and dignity of persons who are ill, elderly and disabled and with the recognition of the state's duty to protect against premature death, which is recognized in Carter. It's informed by decades of work on professional regulation, health governance, health and human rights, and end-of-life law.
A review of these new practices from a health governance perspective is laudable. Unfortunately, Parliament put the cart before the horse by expanding the law prior to a serious evaluation of our current practice. Imagine that we decide to allow a novel form of gene therapy for serious and untreatable conditions, but prior to undertaking a legislatively mandated, five-year, solid review of the risk-benefit ratio, we introduce it as a standard form of therapy largely available on demand.
I definitely have concerns about this review, particularly about the premise from which it will start. In any area of policy-making, it is hard to scale back a practice once there is an official, professed confidence in it. It is also hard to change behaviour and expectations once a procedure is promoted and normalized, and to design post-factum structures to uncover problems and to identify lacunae, particularly when a practice leaves so much flexibility and relies heavily on the integrity of professionals committed to the practice.
I urge the committee to take a step back and remember how the B.C. Supreme Court in Carter, which lies at the foundation of our current practice, stated—with references to choice, indeed, but also the best interest of the patient—that “if it is ever ethical...for a physician to assist in death, it would be only in limited and exceptional circumstances.... The concern about imposing stringent limits stems from the consensus that unlimited physician-assisted death would pose serious risks.”
The committee should be willing to question whether the current practice respects this and what even further expansion would mean. It should do more than review the statistical, largely self-reported data and the limited analyses that have been undertaken. It should take the time to listen to family members who have had bad experiences with the rushed MAID of loved ones and to people who are already struggling in our health care and social support systems, particularly during the pandemic, and for whom offers of MAID are often received as a threat to their well-being.
The committee should hear from Jonathan Marchand, a man with ALS, who complained before the Senate about his lack of health care choices; from the family members of Chris Gladders, who received MAID in shockingly dehumanizing, squalid circumstances; from Roger Foley, who was offered MAID instead of access to good care; from the family of Alan Nichols; and about other more recent cases that are emerging. It should take seriously the voices of people with disabilities who experience the explicit promotion of MAID as a confirmation that our society prioritizes ending their lives rather than providing adequate supports and care.
I urge you to be imaginative and ask how societal and legal endorsements of a broad MAID practice may already be impacting what we think our elderly and people with disabilities should do when they struggle and when solutions to their sufferings are complex and not immediately forthcoming. How will this impact how they think about what they should be doing when faced with old age, frailty and disability?
I urge you to keep in mind the challenging health issues that indigenous people and racialized Canadians disproportionately face, the revolting situation of many of our elderly in long-term care homes, exposed during the pandemic, and the lack of choices for the elderly and people with disabilities. Think about that when exploring the risks of normalizing MAID as therapy for suffering, when critically analyzing the premise in our MAID law that capacity and informed consent procedures are already providing sufficient protection against abuse.
Many of these concerns about the impact of ableism are particularly long-term, but I already have mentioned concrete examples of current concerns. How common are these? I suggest that we need more robust data.
The first Health Canada MAID report, however, should be a wake-up call. In addition to showing the normalization of MAID through the rapid uptake—particularly in some provinces—faster than, for example, in Belgium and the Netherlands, two countries with significantly more investment in palliative care and social support, the report confirms—
The Joint Chair (Hon. Yonah Martin): You have 30 seconds.
Dr. Trudo Lemmens: —some of the concerns with our already broader than strict end-of-life practices. It documents, for example, various factors associated with unbearable suffering that lie at the basis of the more than 15,000 MAID requests. It includes fear of being a burden to family, friends and caregivers in 34% of the cases and loneliness in 14% of the cases. For 53%, it's the loss of dignity, a concept profoundly influenced by ableist perceptions that our MAID practice may stimulate; and inadequate pain control or a fear of pain are cited in 54% of cases, reflecting a possible lack of access to adequate health care and palliative care—and even in some cases existential suffering.
In the question period—
Trudo Lemmens
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Trudo Lemmens
2021-06-21 18:59
Indeed, the Health Canada report and other studies that have been undertaken and are published in the peer-reviewed literature suggest that many people who are receiving MAID in Canada—it's not the majority, but still a substantial number of people—have not had access to adequate palliative care.
There are studies that are more positive. The Downar peer-reviewed study is the most positive about access to palliative care, but it does not discuss in detail what the quality of palliative care was or whether the palliative care offered was of sufficient quality.
The Health Canada report also suggests that 19% of people, for example, had access to palliative care only in the last two weeks before they received MAID. Another 19% actually received it only in the last month.
If you can speak to the palliative care specialists, as I'm sure you will, I'm pretty confident they will state that palliative care takes time. It takes time to offer alternatives to people.
The messages we get from the reports and from the data are not overwhelmingly, “Oh, we have a perfect situation here where people have access to perfect palliative care.”
We know from the data that palliative care is lacking in many Canadian provinces and adequate palliative care is lacking in many Canadian provinces, and that significant improvements can be made in that context.
Jocelyn Downie
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Jocelyn Downie
2021-06-21 19:17
There is absolutely not evidence of that. One thing that happens is when you request palliative care.... If you happen to be in a position where you haven't been offered palliative care before and you request MAID, one thing your clinician is legally required to raise with you is the option of palliative care. It's very important to know that, to recognize it. No, people are not doing that.
Pamela Wallin
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Hon. Pamela Wallin
2021-06-21 19:17
I want to just follow up on the whole question of privilege, from the other side of the coin, if you will. The concerns we hear are about lack of access depending on where people are. It may be regional, if you live in a rural setting as opposed to an urban setting. In fact, a number of people, certainly, have come to me personally. Again, that's anecdotal.
I would like to know what you know about lack of access for people requesting MAID.
Jocelyn Downie
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Jocelyn Downie
2021-06-21 19:18
The concern I have about lack of access is principally in relation to institutions that are not allowing MAID because they are religiously based or they are palliative care organizations that have taken the position that no MAID should happen within their walls. That is what I see as the problem. I didn't raise it, because that's a provincial jurisdictional issue, but it is a really serious concern.
The other thing I would note, and this goes to what you're concerned about, is that there are actually people who are disempowered. If they don't know about MAID or they don't feel like they have a lot of power, they aren't going to ask for it; whereas someone like me, someone like everybody on this panel, we're just going to say, “I want this.” You've been out there, saying that for advance requests. We feel empowered to ask and to advocate for ourselves and to access. I think there are people who are disempowered, who aren't getting access.
Jocelyn Downie
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Jocelyn Downie
2021-06-21 19:28
One of the things that Justice Smith noted in Carter v. Canada was that Gloria Taylor was offered palliative care and didn't want it. Gloria Taylor was at the heart of the Carter decision. Not everybody wants palliative care. Palliative care can't help everybody, but, that said, everybody should be offered palliative care.
These things go hand in glove. MAID and palliative care are not oppositional. They are part of the entire end-of-life care tool box.
Connie Newman
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Connie Newman
2021-06-17 15:54
Thank you, and thank you for the experience. This is very interesting.
I'm Connie Newman, executive director, as you're aware, of the Manitoba Association of Senior Centres' age-friendly Manitoba initiative. I work with a team of six older consultants as we connect with 60-plus member centres throughout the province and over 90 age-friendly communities throughout Manitoba.
Today I am a caregiver for three people whose homes are personal care homes—three different homes, three different residences. I'm fortunate; my three special friends—they're not family—all survived COVID. I have experience. I'm also one of many my age who are tech savvy, sort of.
I'm going to share with you a collection of thoughts, both my own and from others who I connect with on a regular basis.
Personal care homes are institutions. They are supposed to be homes. Why do they present as hospitals and/or institutions? Collectively, we must improve regulations, provincially as well as nationally. Regulations must be monitored. Funding transfers to the provinces must have standards attached.
For families with loved ones in personal care homes, challenges were heightened when in-person visits became impossible due to COVID-19 restrictions. There was, in some cases, almost total isolation from one another and periods with no visits. Visits were shorter, less frequent and with encumbered conversation connections.
Caregivers and volunteers pre-COVID provided much-needed support to their loved ones, family and friends. COVID hit, and that support was left to staff, who did not have the time to focus on the person as caregivers and volunteers did.
Now to community: 93% of older adults are living in the community, often known as aging in place. I became involved in the age-friendly concept early in my career. It takes an entire community to raise a child. I believe it takes an entire community to look after its own older adults.
In 2008 the World Health Organization told us to get ready for the change in population. It is 2021 today. We have more older adults than we have teenagers. There's a population shift. Many are living longer than ever, many of us healthy and trying to maintain our health. Many older adults do not have family in their communities. The community is a social connection. We all know that social participation is a determinant of one's own health, no matter what age. COVID hit, and we were not ready for the population shift. We sure were not ready for isolation.
I'm an age-friendly champion. In many daily connections, I am constantly involved with age-friendly domains: social participation, communication, housing, transportation, community health, building outdoor spaces and civic participation. When I think about them in a community in Canada, where there is an age-friendly focus, COVID was there. The community was working together for each other of all ages. When looking back at these domains, underlying COVID impacted seniors with transportation or a total lack of it. Programs for those aging in community—that's 93% of us—must be maintained, enhanced and encouraged.
In Manitoba we have support coordinators by community and district, who are tasked with connecting individually to older adults and assisting, where they can, in connecting them to services. During COVID they did their best in attempting to maintain some sort of connection. Zoom connections saved many where good Wi-Fi existed; 211 by phone became a lifesaver.
People with dementia and their caregivers are among the most valuable in our communities, and the COVID-19 pandemic has put those families at even greater risk.
Persons with dementia and caregivers were negatively impacted by the gap left by the suspension of formal programs. We have adult day programs that stopped running. Lower-income seniors living on their own or in congregate settings.... We need to ensure that their basic needs are being met—Maslow's hierarchy for those seniors.
On Internet access, who is responsible for ensuring equal access to the World Wide Web? Is it fair, if a person lives in a rural or remote area, that they do not have the same quality of access to information? Why is it that low-income housing in an urban setting does not have Wi-Fi access today? Devices are cheap. Training is a minimal cost. Wi-Fi for equal access must be an all-government focus.
We must continue to collaborate with the World Health Organization on the “Decade of Healthy Aging”. Since COVID hit, I have spent several mornings listening to those wise ones from all over the world. We must learn from each other. We know that COVID has impacted older women living in rural and remote areas, and the data today is impacted or under-reported. Many more are suffering mental health issues and more significant anxiety and depression from prolonged isolation. We're seeing now, today, a lot of hesitancy to get back and involved.
The opportunity for social connection and engagement is limited by going virtual. Many older adults have limited Wi-Fi access or may choose not to use it.
Connie Newman
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Connie Newman
2021-06-17 16:31
There is a big difference. Between access to care in urban Winnipeg, Regina or Saskatoon versus access in rural areas, the difference is like night and day. That's why I'm a real proponent of our support coordinators, who are all over this province. We have more than 103 of them in various communities throughout the province. They're the go-to; they're the people who have a group of seniors, and because they're in rural Manitoba, everybody knows everybody else. They knew to go and check on Mrs. Smith, Mr. Jones, etc.
The biggest thing is, when we went into shutdown.... Home care has a set of rules. There are many people in rural and remote Manitoba who have no family. First, they were left in destitute situations, partly because nobody knew. Second, they were afraid, because they weren't all that healthy to begin with. How do they get to testing? How do they get to their vaccines? If it weren't for our support coordinators out there, I'm not sure that we would be where we are today with vaccinations. There's still a problem there, and I need to deal with it after I finish with this.
It goes back to communication and who knows what out there. To me, it's a big one.
Connie Newman
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Connie Newman
2021-06-17 16:34
The short answer is no. I don't know that there are any creative programs, because what I hear is when people get into trouble. They will phone me and say, “Connie, what do I do about...?” or “Mrs. Smith is living in a.... How does she get to a vaccine site?” I communicate and I connect, so I know which button to push to solve that problem.
We all—including everybody on this line—need to understand that as we age, we become more isolated. Our friends pass away; we're disconnected; family is not there and we don't know who to call.
One of the friends I referred to has a son in New Zealand, so every now and then I get the phone call because his mother is in a personal care home. When you go to rural Manitoba, the need for community connection is huge. We know that if a small town in Manitoba is having a fair, everybody is there. Everybody knows each other.
That same thing happens across Canada. We haven't done fairs and events. My favourite, even in Winnipeg or if you go to rural Manitoba, is to ask, “Where are all the trucks?” All the trucks will be by the coffee shop, and that's where communication happens. That set of trucks takes care of everybody, and that is sadly missing. Here we go again: We don't have Wi-fi to connect those people when they can't connect themselves.
Serge Séguin
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Serge Séguin
2021-06-17 17:00
Access to health care and social services was definitely difficult during the pandemic. It was hard to make a doctor's appointment. All kinds of minor and major operations that had been scheduled, such as hip replacements or knee problems, were postponed. Elderly people often have conditions like these. The specialists have been saying that delays in all of these operations are going to have a harmful impact on people's health.
View Marc Miller Profile
Lib. (QC)
I presume that all Canadians who were able attended the inquest or heard the reporting on those painful moments. This is what is experienced by many if not all indigenous people, who are apprehensive about a health care system that I consider to be first class, myself, but that has often treated them as second class or even third class persons.
During the coroner's inquest, we once again heard things about the reality of daily life for indigenous people who use the health care system, at a time when they are most vulnerable. I have been in almost daily contact with Joyce Echaquan's husband Carol Dubé, who is going through a very difficult time that he is facing with courage and strength. He and his family are still having some very hard times. As I said before, this is the reality experienced by some indigenous people who use the Canadian health care system, which is a jurisdiction jealously guarded by all provinces. That is the case everywhere in Canada.
My mandate is to put in place a law based on the distinctions, to combat anti-indigenous racism in the indigenous health care systems, in particular, but also to transform the system. Some elements have to operate at the same time. Obviously, this reform will be a lengthy and very difficult process, given the jurisdictional disputes that have existed in the past.
One thing that we announced in the budget was a $100 million fund in honour of Joyce Echaquan to combat racism in the health care system directly. I want to stress that this racism exists everywhere in Canada.
Abby Hoffman
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Abby Hoffman
2021-06-07 19:46
Maybe, Ms. Findlay, I'll start and my colleague Ms. Lemaire may want to jump in here.
I think we will freely admit that just as we wrote in last year's report, there is only so much information we are able to gather through these reports that come from providers, which basically ask whether a person accessed palliative care and, if they didn't, whether they would have had access to it if they so wished.
We do know that some of the providers reported that for people who had palliative care and who chose to proceed with their assisted death in any event, the palliative care was not sufficient for them to get relief from their suffering or from the decline in capability and capacity that they were facing.
To be perfectly candid, I don't think we are in a position to really and truly say that we know, qualitatively speaking, what the nature of that palliative care is in each particular case. We are relying on the reports from those providing commentary to us about access to palliative care.
I think the work this committee will do, frankly, will be very welcome, but we are not aware of cases in which someone has said, “I don't have access to palliative care,” or “The palliative care realistically could be better and the consequence of that is that I am proceeding with my decision to end my life through a MAID procedure.”
Abby Hoffman
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Abby Hoffman
2021-06-07 19:48
I think one could go further to say that even within the same community, different institutions and different hospitals may offer different levels of palliative care. We know that some institutions have well-established palliative care and end-of-life services and are well known because of these, while others may be better known for other things.
I would say it's not even a question of pan-Canadian variability. It could be within any given jurisdiction or within any given community for that matter.
This is one of the things we're trying to address through the funding to provinces and territories for an array of home care, palliative care and end-of-life care services, but we all acknowledge that there is a long way to go.
Jacquie Lemaire
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Jacquie Lemaire
2021-06-07 19:49
Yes. Thank you.
The only other thing I would add to what Abby said is that there was some initial research done. What comes to mind is research by Dr. James Downar, who's a palliative care physician and also a MAID provider, using administrative data in Ontario. It compared the socio-economic characteristics of decedents who received MAID to all decedents in Ontario, and from that initial research, in terms of comparing their use of palliative care services, between the two, there wasn't any difference.
Their initial findings were that there is not a difference in terms of access to palliative care services for people who receive MAID versus those who don't. Of course, that's just some research, and certainly more is required.
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