Evidence of meeting #5 for Justice and Human Rights in the 43rd Parliament, 2nd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was maid.
A recording is available from Parliament.
11:55 a.m.
NDP
Randall Garrison NDP Esquimalt—Saanich—Sooke, BC
I have heard anecdotally and had personal experience of people choosing to go earlier than they might have had to go because of their fear of loss of capacity. From your experience, is this something we find in the practice of medical assistance in dying?
11:55 a.m.
President, Canadian Association of MAiD Assessors and Providers
This is a real concern among patients and their families. Even after years of experience, even after I can tell patients that there's no reason to believe they should stop their pain medications, that there's no reason to believe they're going to lose capacity.... I can reassure them as much as I want; people and their families are still terrified of this possibility, and they will often receive subpar care, during those 10 days while they're waiting, for fear of loss of capacity. The number one fear of people, after they have been told they're eligible, is the fear that they might still lose the choice.
11:55 a.m.
NDP
Randall Garrison NDP Esquimalt—Saanich—Sooke, BC
Just quickly—I have about 30 seconds left—on the question of conscience for physicians, can you talk about the possible impacts that failures to refer them have on people accessing the service for medical assistance in dying?
11:55 a.m.
President, Canadian Association of MAiD Assessors and Providers
Madam Chair, I think it's important to point out that Bill C-14 and Bill C-7 are very clear about protecting, respecting and supporting conscience rights, and certainly our organization is very strongly in support of that, but when people do not follow professional guidelines to do effective referrals, we're finding obstruction of access to care. What's happening is that patients and families are coming to us very late on, and that's where we get into the problem with the 10-day waiting and the loss of capacity. They come to us in a much more urgent situation.
Many of our patients are socially isolated. They may have been hospitalized for weeks. They may not have social friends or even the technical abilities to find access to care, and they are absolutely reliant on their caregivers to provide that information and provide a way for them to access better information and access to care. Without that possibility, they are simply locked out of this.
11:55 a.m.
Liberal
The Chair Liberal Iqra Khalid
Thank you, Dr. Green. Thank you, Mr. Garrison.
With three minutes left of this hour, I think it's time for us to thank our witnesses.
To all of the witnesses, if you have any additional clarification or any additional information you would like to provide the committee as a result of the lines of questioning from members, please submit it to the clerk. We look forward to reviewing the evidence you are providing. Thank you for taking the time to appear before us and to give your remarks.
We'll now suspend for a few minutes as we switch the two panels.
Thank you, everyone, once again.
Noon
Liberal
The Chair Liberal Iqra Khalid
I welcome everybody back.
I'd like to welcome our witnesses.
We have, appearing as an individual, Dr. Serge Gauthier, who's a neurologist and professor in the departments of neurology, psychiatry and medicine at McGill University; we have Dr. Mona Gupta, who is a psychiatrist and associate professor; we have Dr. Leonie Herx, who is a palliative medicine consultant; and we also have Dr. Tarek Rajji, from the Centre for Addiction and Mental Health.
Thank you for appearing with us today.
Each of you will have five minutes to give your opening statements. We'll start with you, Dr. Gauthier.
Noon
Dr. Serge Gauthier Neurologist and Professor, Departments of Neurology, Psychiatry, and Medicine, McGill University, As an Individual
Thank you, Madam Chair.
Thank you for the invitation to appear before the committee. I hope that my experience in conducting clinical research on Alzheimer's disease for the past 35 years will be useful for your deliberations.
I'll make a brief opening statement and then answer your questions.
I can confirm that, in recent years, a number of people in the early stages of Alzheimer's disease have spontaneously expressed their desire to die peacefully, surrounded by their family, at a time of their choosing. For example, I'll read you an excerpt from a document written two years ago by one of my patients, an 84-year-old woman. This document is part of her confidential medical record:
Should medical assistance in dying be added to the advance medical directives, I am asking, with a clear mind, that medical assistance in dying be added to my list of desired care if, having become irrevocably incompetent, I no longer recognize my husband and daughter-in-law. This would be the ultimate indignity for me.
I'm trying to point out that people think many years in advance about the stage of Alzheimer's disease where they no longer wish to keep on living. This also applies to Parkinson's disease.
The stages of Alzheimer's disease follow a fairly predictable pattern and are irreversible. For example, nighttime urinary incontinence, in the absence of an infection or other disease, is known to occur at stage 6, level a, out of 7 stages. People living with the disease and family members who wish to become informed know about these stages. This information is usually provided when people request it. These stages occur over a period of six to eight years, until natural death. A fairly common feature of all these illnesses is that patients develop aspiration pneumonia, often repeatedly, until natural death. The end-stage dementia usually affects people who have been in bed for a year without being able to communicate with anyone.
I have a proposal for the committee. The current text of Bill C-7 refers to dates chosen by the person seeking medical assistance in dying. However, for neurodegenerative diseases, such as Parkinson's or Alzheimer's, the reference points should instead be stages, which people can choose in advance and which families and clinicians will later recognize.
My question is the following. Can the concept of disease stages be added to the bill, rather than a reference to specific dates?
Thank you for your attention.
12:05 p.m.
Liberal
The Chair Liberal Iqra Khalid
Thank you very much for that, Dr. Gauthier. You spared us a whole minute, and we really appreciate that.
Now we'll move to Dr. Mona Gupta. You have five minutes, Doctor. Please go ahead.
November 5th, 2020 / 12:05 p.m.
Dr. Mona Gupta Psychiatrist and Associate Professor, Centre de recherche du CHUM, As an Individual
Thank you, Madam Chair and members of the committee, for the opportunity to meet with you today. I'm going to restrict my remarks to the question of MAID for persons whose mental disorder is their sole underlying medical condition, as this is my area of expertise. Throughout, to be more succinct, I will shorten this to MAID for mental disorders.
I'm a psychiatrist and an associate professor at Université de Montréal. In my clinical practice I work in consultation with liaison psychiatry, which involves the psychiatric care of the medically ill. I'm a researcher in the ethics and philosophy of psychiatry, and I've been working on assisted dying for the last several years. I did serve on the Council of Canadian Academies' working group on MAID for mental disorders as the sole underlying medical condition.
As a psychiatrist in Quebec, I'm a member of the Association des médicins psychiatres du Québec, the AMPQ, which represents the province's 1,200 psychiatrists. Currently I am chair of its advisory committee on MAID for mental disorders. This committee includes five psychiatrists with divergent views about the topic, a patient partner, and a family member. The committee has worked over the last nine months to produce an advisory document laying out an approach to thinking about the difficult clinical questions that can arise in the context of a person's requesting MAID for a mental disorder. We've just finished it. I've sent the French version—
12:05 p.m.
Liberal
The Chair Liberal Iqra Khalid
Dr. Gupta, I'm sorry; you're speaking very fast, and interpretation is having a little bit of difficulty pacing themselves. Please just slow down your pace a little bit. Thank you.
12:05 p.m.
Psychiatrist and Associate Professor, Centre de recherche du CHUM, As an Individual
Yes, absolutely. I will try.
I have sent the French version of the report to the clerk and I will be able to send you the English version at the beginning of next week.
Our committee's work illustrates that professionals working with patients and families are able to come together and agree on standards and safeguards for MAID for mental disorders. Of course, there will be people who disagree. Indeed, in a survey of our own members, while 54% of respondents replied that MAID for mental disorders is permissible in certain circumstances, 36% disagreed. There will also be those who object on conscience grounds, but this is the case already.
In the course of doing this work, we explored the issues of assessing capacity, incurability, irreversibility, suffering and suicidality. Today I'm going to speak specifically about capacity and incurability-irreversibility, as these are identified in the charter statement as the reasons mental illnesses can be excluded as a basis for MAID access.
First, I will say a quick word about language.
Bill C-7 uses the expression “mental illness” while standard psychiatric language uses “mental disorder”. It's unclear if mental illness is a synonym for mental disorder or if it refers to a subgroup of conditions. If it's a subgroup, we don't know which conditions are included and which are excluded.
In either case, in thinking about the exclusion clause for mental illness, we are confronted by the fact that neither the Canadian nor the Quebec laws permitting MAID ever excluded persons with mental illness or disorder, nor do they make reference to diagnosis at all.
The eligibility criteria are based on the clinical circumstances of the requester. Furthermore, those who have conditions with both psychiatric and physical aspects and those who have comorbid mental and physical conditions have never been excluded, nor will they be by Bill C-7, even if the psychiatric condition motivates the request, so any rationale to exclude people whose mental disorder is their sole underlying medical condition needs to apply to this and only this group of people.
The government's stated rationale is that screening for decision-making capacity is particularly difficult and subject to a high degree of error, and that mental illness is generally less predictable than physical illness in terms of the course the illness will take over time.
I want to point out two things about the worry about assessing capacity.
If assessing capacity is difficult for people with mental illnesses, then the same difficulty ought to apply in cases of mental and physical comorbidity. There is nothing about the existence of a second, physical condition that would remove this difficulty. If anything, it makes the situation more complex. In fact, at present we do assess capacity to consent to MAID in people with mental disorders and comorbid physical conditions. Presumably, if the method works in one circumstance, we would need a specific reason that shows it does not work in the other.
The second worry is that we might make mistakes in our assessment of capacity. This is not the right way to frame the problem. Capacity is not something you get right or wrong; determining whether somebody is capable is a judgment, and in matters of judgment it's to be expected that assessors may not always agree. However, because capacity is not presumed for MAID and has to be established, if assessors cannot agree, they cannot proceed.
Regarding predictions of incurability and irreversibility, it is tempting to say that because of the finality of MAID, we should not act unless we are 100% certain. However, outside the context in which a person's natural death is reasonably foreseeable, prognostication becomes more difficult in many situations. This is not limited to situations of mental disorder. The proper clinical question is how much certainty is required in order to find someone eligible.
Reflecting on cases of people with comorbid physical and psychiatric conditions who have accessed MAID in this country reveals that the concerns raised about assessing capacity and prognosis are already part of current practice. I have explained this with some real case examples in a short document that I have sent to the clerk.
In conclusion, I don't think there's a way that withstands logical scrutiny of distinguishing all cases of mental illness as a sole underlying medical condition from other clinical problems for which MAID is permitted.
As a result, what the exclusion clause will do is show that it is acceptable to treat people with mental illnesses differently from others. The AMPQ does not accept this position. We believe our patients must be entitled to exercise the same rights as all other persons.
Thank you.
12:10 p.m.
Liberal
The Chair Liberal Iqra Khalid
Thank you very much for that, Dr. Gupta.
I will now move on to Dr. Leonie Herx—
12:10 p.m.
Bloc
Luc Thériault Bloc Montcalm, QC
While I was raising my point of order, the interpretation continued. On that note, I'd like you to ask the witnesses to slow down. Otherwise, the interpreters' job is extremely difficult and the interpretation is unintelligible.
It's unfortunate that we have only five minutes to hear everything that witnesses of this quality have to say. However, given that briefs were submitted, discussions should be encouraged.
Sorry for taking up time.
12:10 p.m.
Liberal
The Chair Liberal Iqra Khalid
You're absolutely right, Monsieur Thériault. Thank you for your important intervention. I've been trying to make sure that we're getting as much as possible, but we'll continue to try harder.
Dr. Leonie Herx, please commence your five minutes. For the benefit of interpretation, can you please speak at as moderate a pace as possible?
Thank you.
12:15 p.m.
Dr. Leonie Herx Palliative Medicine Consultant, As an Individual
Thank you, Madame Chair, and thank you to the committee for having me today.
Good afternoon. My name is Dr. Leonie Herx. I'm a palliative medicine specialist, associate professor and head of palliative care at Queen's University. I'm the immediate past president of the Canadian Society of Palliative Care Physicians and I've been on their board of directors for the past eight years. I'm also an adviser to the Vulnerable Persons Standard, an internationally recognized evidence-based framework that outlines the safeguards necessary to protect vulnerable persons who may be subject to coercion and abuse in a system for medically administered death.
I come before you today to share concerns that are not mine alone, concerns that are shared by many physicians across Canada, as evidenced by the 959, and counting, physicians from all medical specialties who have signed our MAID to MAD petition that was submitted to this committee. In the Carter v. Canada ruling, the Supreme Court stated that a carefully designed and monitored system of safeguards would limit risk to vulnerable persons. In our recent publication in the World Medical Journal in April 2020, my palliative medicine colleagues and I documented concerns and reviewed evidence of errors and harm occurring under the current Bill C-14 MAID regime. A copy of our paper has been submitted to you as well.
Bill C-7 proposes to further reduce these safeguards and put more Canadians at risk of wrongful death. Year after year, there have been documented cases of non-compliance and misapplication of the law and policy with respect to MAID in Canada. The chief coroner of Ontario, the end-of-life care commission in Quebec and, very recently, the correctional investigator of Canada have all reported on these issues.
We also see instances of vulnerable patients being told by their health care team that they should consider a medically administered death because the cost of their care is too great. Roger Foley, from London, Ontario, required 24-hour care that was not able to be provided in his home. While living at the hospital, an administrator suggested that he get MAID, not out of compassion for his circumstances but out of concern for the cost of his care on the system. This conversation was recorded and, of course, has been widely shared.
MAID has also been suggested when the health care team perceives an individual as not having value. While receiving emergency treatment in hospital, Candice Lewis, a 25-year-old woman with a developmental disability and chronic medical problems, had a doctor approach her mother and suggest that she consider MAID for her daughter. Her mother said they were not interested in MAID, and the doctor told her she was being selfish. The doctor then tried to convince Candice herself that she should get MAID. Because Candice felt scared, she asked to go home. The family complied and took her home, feeling that it was unsafe to stay in the hospital.
The UN special rapporteur on the rights of persons with disabilities issued a concern after a recent trip to Canada in 2019. She stated that she was “extremely concerned about the implementation of the legislation on medical assistance in dying from a disability perspective” and that there was a lack of protocol “to demonstrate that persons with disabilities have been provided with viable alternatives when eligible for assisted dying.”
We have seen countless patients whose hope and resilience were restored when their basic care needs were met. We know that many people request medically administered death out of fear of being a burden to others. This demoralization and sense of being a burden is amplified when real options to support living do not exist.
If we are trying to make a medically administered death regime safer for Canadians, then we should look to the Victoria, Australia, legislation, which employs stringent safeguards to address important issues such as the risks of coercion. I've included sections of the legislation in my written brief for your reference. In the Victoria legislation, doctors must not bring up assisted death to a patient unless they ask about it. This is especially important for persons who already feel they are a burden and less valued in society as a result of systemic discrimination.
Bill C-7 is written in such a way that a patient could choose to die before they have actually received therapies that we know in medicine have a high likelihood for recovery or relief of suffering. In other countries where MAID is legalized, it is most often only available for those who are dying. Regardless, all other jurisdictions require that physicians determine that there are no other options of care left to pursue. It is a last resort only.
Physicians who know that there are reasonable treatment options for their patients have a professional duty to instill hope and support resilience and not to stimulate a desire to die. My professional integrity as a physician compels me to offer recommendations to promote the health and well-being of my patients. If I am required to present death as an option alongside evidence-based standards of medical care, this compromises my ability to provide good care to my patients. Doctors need to be able to work with integrity and have our consciences' rights respected.
For the sake of vulnerable Canadians and the practice of medicine, I urge this committee to make significant amendments to this proposed legislation.
Thank you.
12:20 p.m.
Liberal
The Chair Liberal Iqra Khalid
Thank you very much, Dr. Herx.
You were exactly on that five-minute dot. That's really appreciated.
Last but not least, we'll go to Dr. Tarek Rajji from the Centre for Addiction and Mental Health.
Please go ahead, Doctor. You have five minutes, starting now.
12:20 p.m.
Dr. Tarek Rajji Chief, Geriatric Psychiatry, Centre for Addiction and Mental Health
Thank you.
Members of the Standing Committee on Justice and Human Rights, thank you for the opportunity to appear before you to discuss Bill C-7 and specifically the amendment that “persons whose sole underlying medical condition is a mental illness are not eligible” for MAID.
My name is Dr. Tarek Rajji. I am a psychiatrist. I'm the chief of the adult neurodevelopment and geriatric psychiatry division at CAMH, the Centre for Addiction and Mental Health in Toronto.
CAMH is Canada’s largest mental health teaching hospital and one of the leading research centres in the field. CAMH uses its expertise in clinical care, research, education and system-building to improve the lives of people impacted by mental illness, including those with substance use disorders.
Since 2015, a working group of CAMH staff with expertise in psychiatry, social work, law, ethics, public policy and lived experience have been deliberating regularly on MAID and mental illness. It is our collective expert opinion that Bill C-7 gets it right.
We agree that there should be a temporary prohibition on MAID for those whose only medical condition is mental illness until, as the bill’s preamble states:
...further consultation and deliberation are required to determine whether it is appropriate and, if so, how to provide medical assistance in dying to persons whose sole underlying medical condition is a mental illness in light of the inherent risks and complexity of the provision of medical assistance in dying in those circumstances...
The reason we support this temporary prohibition is that there is currently a lack of consensus in the mental health field to determine when an individual has an irremediable mental illness.
To explain further, to be eligible for MAID, an individual must have a “grievous and irremediable” medical condition. Their illness, disease or disability must be incurable, irreversible or irrecoverable and cause intolerable suffering.
The grievousness of an illness is subjective, and there is no doubt that some people with mental illness experience intolerable psychological and sometimes physical suffering due to their symptoms.
The irremediableness of an illness, however, is an objective determination that must be based on the best medical evidence available. CAMH’s concern is that there are currently no established criteria that define if and when a mental illness should be considered irremediable. That is because there is simply not enough evidence in the mental health field at this time to predict the trajectory of any one person’s mental illness and to ascertain whether an individual has an irremediable mental illness.
This means that the irremediable criteria would be open to interpretation by each MAID assessor, and any determination that a person has an irremediable mental illness would be inherently subjective and therefore arbitrary. This could put people with mental illness at risk of accessing MAID when they do not meet the eligibility criteria.
Therefore, CAMH strongly recommends that evidence-based criteria be developed prior to any decision to lift the temporary prohibition on MAID for people whose only medical condition is mental illness. These criteria should establish a consensus definition for when a mental illness should be considered irremediable for the purposes of MAID.
CAMH recommends that the government appoint an expert working group to develop these criteria within a reasonable time frame, recognizing the complexity of the task. The working group should develop the criteria in consultation with a broad range of experts in the mental health field, including people with lived experience of mental illness and family members. The introduction of these evidence-based criteria should be accompanied by training for MAID assessors. CAMH would be happy to participate in the development and dissemination of the criteria.
Thank you again for the opportunity to speak with you today on this complex and nuanced topic. I am happy to answer any questions.
12:20 p.m.
Liberal
The Chair Liberal Iqra Khalid
Thank you very much, Dr. Rajji, for your concise remarks. I really appreciate them.
Having exhausted the witness list, I will now go into our round of questions. The first round is six minutes per member.
We'll start with Mr. Cooper. You have six minutes, sir.
12:20 p.m.
Conservative
Michael Cooper Conservative St. Albert—Edmonton, AB
Thank you very much, Madam Chair, and thank you to the witnesses.
Dr. Herx, I want to drill down into some of the safeguards this legislation would remove, starting with the 10-day reflection period.
The letter you signed along with other physicians makes reference to the possibility of same-day death. During the debate at second reading, the government dismissed that possibility. Can you elaborate on that concern with respect to the elimination of the 10-day reflection period?
12:25 p.m.
Palliative Medicine Consultant, As an Individual
Yes. Thank you for the opportunity.
Obviously, this is the work that I do on the front lines every day with patients who express a desire to die as part of normal grieving, anger, frustration and sometimes despair at facing a devastating diagnosis. Most often, these wishes for death are fleeting and transient in nature.
In fact, Dr. Harvey Chochinov, a renowned psychiatrist in Canada, has shown that these death wishes can be transient even over a shorter period of time, 12 to 24 hours. Elimination of the 10-day waiting period doesn't allow a person time enough for reflection to change their mind.
Many times we see patients change their mind when they have access to good care and supports and an ability to see their lives in a different way, as having meaning. Wishes for death are often driven by fear and anxiety rather than uncontrolled physical symptoms.
Helping a person receive support to work through their new diagnosis is very important. A person with a “reasonably foreseeable death” under this new legislation could be having a really bad day and be in despair because they haven't seen a loved one or because, as we've seen, social isolation and loneliness have been amplified through the COVID-19 pandemic.
Out of those depths of despair, their worst day could become their last day in the absence of a required reflection period to make sure that this is actually what a person wants and that it's not a transient desire coming out of their not having adequate supports or time to really understand what they're asking for.