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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—
View Michael Cooper Profile
CPC (AB)
Thank you again, Madam Co-Chair.
Dr. Lemmens, Dr. Romayne Gallagher, a palliative care physician and member of the faculty of medicine at the University of British Columbia, wrote a paper in which she argued that in many cases of MAID, it should be considered a medical error on the basis that the suffering that led to that request could have been alleviated with palliative care and other methods of support.
Having regard for the Health Canada report, and the table listing the 11 types of intolerable suffering, and the frequency of such suffering in the course of making a MAID request, would you care to comment on that?
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.
Pamela Wallin
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Hon. Pamela Wallin
2021-06-21 19:16
Thank you.
Just to follow up on Senator Kutcher's note that anecdotes do not equal data, is there, in your mind, a serious number of MAID requests that have been put forward due to lack of access to palliative care?
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.
View René Arseneault Profile
Lib. (NB)
Thank you, Ms. Downie. I don't have much time left and I have a second question for you.
We're aware of the Carter decision. The justices unanimously tell us that a person seeking medical assistance in dying must have an incurable disease that causes physical or psychological suffering and for which they are not required to obtain medication or treatment.
The main argument of MAiD opponents is always that there is a lack of palliative care or that there are other options. How can this be reconciled with the Carter decision?
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.
View Geoff Regan Profile
Lib. (NS)
You're one of many examples of newcomers to Nova Scotia, the Atlantic region and Canada who have come here and have new eyes and good skills and have created economic activity benefiting their area. You're also, I think, benefiting by spreading peace and kindness.
I am pleased, as a former StFX student from a few years ago, to know that the StFX students not only can go to The Wheel to get their pizza still, but can also get some great treats from Peace By Chocolate, and I can get them all across the country in stores as well. That's wonderful.
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.
View Corey Tochor Profile
CPC (SK)
Thank you very much.
Thank you to our witnesses.
We were talking about the unfairness of some of the decisions about age 75, making the cut-off lower, or not having a cut-off for seniors, which I would agree with. It is unfair.
At the start of the pandemic, we knew that seniors were going to be the unfortunate target of this virus. After we turn the corner and in the years to come, we'll look back at some of the decisions we made. It's not about pointing fingers, but we should have bubble-wrapped our seniors. The seniors were the ones who were going to be affected the most by this virus. I don't think we've done enough for seniors.
Ms. Newman, you remind me of my mom, a lot. I appreciate your testimony so much, with your straight-shooter demeanour. I very much appreciate it. I'm from Saskatoon. I've spent a fair bit of time in Winnipeg. I'm a prairie boy, as well. Some of the struggles we have out here are probably very similar to those in Manitoba.
Can you expand a bit on your awareness of the differences in care during this pandemic in rural Manitoba versus in Winnipeg, where I believe you live?
Connie Newman
View Connie Newman Profile
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.
View Corey Tochor Profile
CPC (SK)
You spoke about vaccines and that's the next thing you're turning to. I think it has been well documented that delaying second doses is prolonging the restrictions out there. Have you heard any stories from Manitoba on the deliveries of vaccines? We all get that it's delayed getting into Canada, but are there any creative programs running right now in Manitoba to get seniors vaccinated in rural or urban areas that you can share with the committee?
Connie Newman
View Connie Newman Profile
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.
View Stéphane Lauzon Profile
Lib. (QC)
I see that the time is going by very quickly, and so would like to return to another subject.
Seniors were the focus of the programs that your organization supported. Have you noticed which services in particular, in the Quebec community you represent, were used most by seniors since the beginning of the pandemic?
Does your organization have trouble ensuring that services meet the needs of seniors and that it is easy for all of them to gain access?
How did the organizations you are familiar with ensure that the services were appropriate and accessible?
Serge Séguin
View Serge Séguin Profile
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 Adam van Koeverden Profile
Lib. (ON)
I thank the minister, Mr. Chair.
On June 2, the coroner's inquest into the death of Joyce Echaquan ended. Throughout the inquest, Canadians across the country learned new details about the mistreatment that Joyce Echaquan suffered shortly before her death.
What plans have been put in place to combat anti-indigenous racism in the health care system? What could the government do to ensure that the indigenous peoples, in particular indigenous women, have equitable access to health care?
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.
View Kerry-Lynne Findlay Profile
CPC (BC)
Thank you, Madam Chair.
This is for the Department of Health, for either Ms. Hoffman or Ms. Lemaire.
I certainly thank you all for being here today on rather short notice. We don't have a lot of time, but I do want to say that this review is long overdue. Bill C-14 called for a statutory review in June of 2020, and in the interim we have, instead, had an expanded MAID regime. The state of palliative care was supposed to be examined in the Bill C-14 review, so I'd like to start there.
The first annual report on MAID in Canada said that while many recipients of MAID had received some sort of palliative care, “it does not speak to the adequacy of the services offered. This may be an area for future study.”
I think that's part of what we're doing here.
Where are we on reviewing the quality of palliative care MAID recipients were offered or experienced? Also, do we have any way of knowing if any Canadians have chosen to end their lives through MAID because of a lack of quality palliative care or resources more generally?
Abby Hoffman
View Abby Hoffman Profile
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.”
View Kerry-Lynne Findlay Profile
CPC (BC)
Would you agree with me that there are differences and discrepancies across the provinces and territories in terms of the availability and quality of care? From the reports you're getting, they are not all offering exactly the same amount or in the same areas.
Abby Hoffman
View Abby Hoffman Profile
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
View Jacquie Lemaire Profile
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.
Stanley Kutcher
View Stanley Kutcher Profile
Hon. Stanley Kutcher
2021-06-07 20:09
Thank you very much for that.
I have a question on the palliative care.
You mentioned that there were great discrepancies across some centres on how palliative care is delivered. In your experience and to your knowledge of Canada's health care system, is that discrepancy similar to or vastly different from other types of health care interventions that are available across the country?
Abby Hoffman
View Abby Hoffman Profile
Abby Hoffman
2021-06-07 20:09
Briefly, inasmuch as palliative care is relatively newer, it might be somewhat dissimilar. On the other hand, if you think about our health care institutions, many of them specialize in certain aspects of health and disease, chronic or acute disease. I think there may be wider discrepancies now, but they are, over time, narrowing as palliative care takes on a much more legitimate and fulsome place in the array of health care services in Canada.
Michael Nelson
View Michael Nelson Profile
Michael Nelson
2021-06-07 11:03
Thank you very much, Mr. Chair.
Good morning. Thank you to all the members of the House of Commons Standing Committee on Health, in particular Luc Thériault, the member for Montcalm, for the opportunity to present on behalf of the Canadian Association of Optometrists.
My name is Dr. Michael Nelson and I'm the president of the association. I'm also a practising optometrist in Winnipeg, Manitoba, and I'm joined by François Couillard, our CEO, and Laurèl Craib-Laurin, our senior manager of government and stakeholder relations.
The Canadian Association of Optometrists represents over 5,400 optometrists who serve as Canada's primary eye care doctors. Our experience during the COVID-19 pandemic has been to have an increase in patients complaining of a variety of vision problems. Canadians are realizing the importance of their vision and that they should not be taking it for granted. Optometrists are seeing higher rates of eye fatigue, increased incidence of dry eye disease and a growing rate of myopia. Conditions like diabetic retinopathy, which can lead to vision loss, have worsened as some Canadians have chosen to delay their routine eye exams.
The growing myopia rate is especially alarming for optometrists and should raise a flag for government. Last year, the World Health Organization's inaugural world report on vision included some startling findings. Listen to this: The rate of myopia is expected to rise from 28% in 2010 to 50% by 2050. This is very alarming as myopia increases the risk of glaucoma, retinal detachment and vision loss in adults. While heredity plays a large part in myopia, it is further exacerbated by what we have seen through the COVID-19 pandemic with more and more near and close time and not enough outdoor time. This is especially worrisome for children because of the increased screen time for school and recreational activities.
For those living with diabetic retinopathy, a condition that is particularly predominant in indigenous populations, the problems of accessing care during the pandemic have resulted in worsening eye health.
François Couillard
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François Couillard
2021-06-07 11:05
There are some high-level policy issues regarding eye health that deserve the attention of the federal government, as they have major implications not only for the health of Canadians, but also for the economy and productivity of our nation.
A Deloitte Access Economics research paper released last month estimates the total cost of vision loss in Canada was $15.6 billion in 2019. That was before the COVID‑19 pandemic.
The lack of a coordinated primary health care system for eye health was particularly evident during the COVID‑19 pandemic, which significantly reduced the ability of optometrists to provide care to Canadians. Vision problems affect the majority of Canadians, with six out of 10 Canadians reporting having had a vision problem. Every year, nearly one million Canadians miss work or school, or have their performance affected by vision problems.
We would like to encourage the Standing Committee on Health to conduct a study on vision, once this pandemic is over.
For whatever reason, Canada's many health care systems do not recognize that our eyes deserve the same level of care as other parts of the body. There is an urgent need to prioritize eye health and access to appropriate vision care for all populations.
We have the opportunity to make eye health and vision care an integral part of health care delivery from birth. Seventy-five per cent of vision loss can be treated or prevented, which means that early detection and treatment can improve population health and help avoid more costly future interventions and treatments.
Thank you very much for your attention.
Steven Morgan
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Steven Morgan
2021-06-04 13:19
Thank you very much. I appreciate the opportunity to speak to you today.
By way of introduction, I am an economist by training, and I am a full professor of health policy at the University of British Columbia. I think it's important to note, for instance, that I've published over 150 peer-reviewed research papers on pharmaceutical policy. I've won literally millions of dollars in peer-reviewed research grants in Canada and the United States. I have served as an expert on expert advisory committees concerning matters related to pharmaceutical pricing and access for the World Health Organization and the OECD.
I'll keep my opening remarks very brief, as I prefer to use the available time to help fill knowledge gaps that you might have identified as important to your work.
I will start by expressing my support for reforms to our patented medicine price regulations. The old regulations were never designed to provide significant protection against high prices in Canada. They were designed on the false premise that, if Canada paid about the same amount for pharmaceuticals as countries with high levels of pharmaceutical R and D, then Canada would also become a country with high levels of pharmaceutical R and D.
That was never going to happen, and, sure enough, it didn’t. As I wrote during the 10-year review of the PMPRB in 1997, there was much to fix in the regulations from their outset, but the need for regulatory reforms has become even greater in recent years.
Two trends are important here. First, the pricing of pharmaceuticals has become entirely secretive worldwide. Drugs are priced like cars at a dealership. There is the list price, which everyone knows is higher than anyone should really pay, and then there is the actual price, negotiated in secrecy between the seller and each individual buyer.
Paradoxically, it was the widespread use of international reference pricing regulations that was the main reason that secrecy has now become the norm in pharmaceutical pricing. That is, so many countries were using international comparisons of list prices to determine the maximum prices that should be charged within their countries that manufacturers decided to go with confidential prices and confidential price negotiations as a means by which they could charge the most they possibly could in every market. In order to do that, they had to inflate, that is, to raise, list prices in every market. The benchmarking of list prices to international comparisons is now the norm, and, frankly, it is no longer enough.
This brings up the second reason for regulatory modernization. That is the excessive prices that are now frequently asked for for many medicines, especially for medicines that are specialized drugs for treating serious conditions. Excessive patented drug prices are indeed possible, because patents give manufacturers temporary monopolies over the sale of particular medicines.
The potential for abuse of the resulting market power is high, because consumers of patented medicines, also known as “patients with medical needs”, can suffer and might even die if they are unable to afford a treatment. By legally limiting the net-of-confidential-rebate prices that a manufacturer can even ask the Canadian health care system to pay, new patented drug price regulations could prevent the worst cases of excessive pricing and, at the same time, speed up negotiations over final prices and the terms of coverage for Canadians. Patients would get the medicines they need more quickly, and our health care system, ideally a system with universal pharmacare incorporated within it, would likely be able to afford to cover more of those medicines.
Industry will oppose these reforms, and they will provide funding to patient groups willing to oppose the reforms, too, but that doesn’t mean the regulations are wrong. If anything, it means that, unlike the original 1987 versions of the PMPRB regulations, the proposed reforms might actually work.
Thank you. I look forward to any questions you have.
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