Joint Committee on Assisted Dying debate -
Tuesday, 17 Oct 2023

Assisted Dying in Canada: Discussion

An Cathaoirleach

Apologies have been received from Senators Lynn Ruane, Annie Hoey and Mary Seery Kearney.

Parliamentary privilege is considered to apply to the utterances of members participating online in a committee meeting when their participation is from within the parliamentary precincts. There can be no assurances in relation to participation online from outside the parliamentary precincts. Members should be mindful of this when contributing.

Witnesses participating in this committee session from a jurisdiction outside of Ireland should note that their evidence may be subject to the law of that jurisdiction. This committee discusses dying, including suicide, and support information can be found on the committee's webpage.

Our agenda item today is engagement on the topic of assisted dying in Canada and is part of the module on assisted dying in the international context.

I warmly welcome Dr. Heidi Janz, Dr. Konia Trouton, Dr. Leonie Herx, Dr. Jocelyn Downie and Professor Trudo Lemmens. We are grateful to them for sharing their knowledge with the committee. Members will ask their questions after the witnesses have given their opening statements. I kindly ask our witnesses to keep their statements to the five minutes as agreed.

Dr. Heidi Janz

I will talk about assisted dying and the impact that Canada's expansion of eligibility for medical assistance in dying to include people with disabilities, whose death is not reasonably foreseeable, is having on Canadians with disabilities.

While I acknowledge the complex and sensitive nature of this topic, my main message to you is simple: do not be Canada. Since the initial legalisation of MAID in 2015, Canada has become the poster child for the dangers of legalising assisted suicide. It is fundamentally important to recognise that both the initial 2016 legalisation of MAID for people with grievous and irremediable medical conditions, whose natural death is reasonably foreseeable, and the 2021 expansion of eligibility to include people with disabilities, whose natural death is not reasonably foreseeable, marks seismic shifts in the already often troubled relationship between people with disabilities and healthcare providers. This is because the legalisation and expansion of MAID to people with disabilities who are not at end-of-life created a situation in which clinicians embedded in a healthcare system where ableism is routinely taught, learned and practised were given the responsibility of deciding which disabled lives should be ended via MAID and which should not.

Do not be Canada. Pay heed to your disability rights advocates when they warn that legalising assisted death for people with disabilities who are not at end-of-life will very quickly and inevitably lead to the creation of society in which it is easier and more expedient for people with disabilities to get assistance in dying than it is to get assistance to live self-determined and dignified lives in the community.

Growing numbers of Canadians with disabilities are being driven to choose MAID as their only viable alternative to intolerable living conditions. Among these are Chris Gladders, who died by MAID in January 2021 at the age of 35. He was battling Fabry's disease, a genetic condition. He had two daughters, Hailee, 13, and Savannah, five. He lived in a long-term care facility. His brother reported that at the time of his assisted death, the bedding had not been changed for weeks, there was faeces and urine on the bed and on the floor. The room was absolutely disgusting. The day before his death, Chris pulled the call bell beside his bed. I was on the phone with him for 40 minutes and nobody answered that bell. That was his last night.

Equally, disturbing is the case of Sofia. This is the preferred pseudonym of a 51-year-old Ontario woman who had multiple chemical sensitivities, a chronic condition. She underwent a medically assisted death after a frantic effort by friends, supporters and even her doctors to get her safe and affordable housing. She left behind letters showing a desperate two-year search for help, in which she begged local, provincial and federal officials for assistance in finding a home away from the smoke and chemicals wafting through her apartment. Four local doctors were aware of Sofia's case, and they also wrote to federal housing and disability officials on our behalf. In that letter, the doctors confirmed that her symptoms improved in cleaner air environments and asked for help to find or build a chemical free residence. They wrote that as physicians they found it unconscionable that no other solution was proposed to this situation other than medical assistance in dying.

There is the equally troubling and tragic story of Sathya Dhara Kovac. She died by medical assistance in dying, MAID, on 3 October 2022. Ms Kovac lived with amyotrophic lateral sclerosis, ALS. Her condition was worsening but she felt she had more life to live - just not enough home care support to do so. Kovac wrote in an obituary to loved ones, "Ultimately it was not a genetic disease that took me out, it was a system". Her obituary continues:

There is desperate need for change. That is the sickness that causes so much suffering. Vulnerable people need help to survive. I could have had more time if I had more help.

Do not be Canada. Further expansion of eligibility for MAID to people with a sole diagnosis of mental illness, those with advance directives requesting MAID if they become mentally incompetent and, ultimately, so-called mature minors with illnesses and disabilities is looming on the near horizon. Canada is thus continuing its rapid descent down a slippery slope which many still claim does not exist. I sit before the committee today to implore it: for the sake of preserving true dignity and true choice for disabled, ill, old and other structurally vulnerable people in Ireland, do not be Canada. Tread carefully and prioritise ensuring that all disabled, ill and structurally vulnerable people in Ireland have adequate assistance to live over ensuring the legalisation of assistance to die.

I thank the committee for the opportunity to speak to it about this important topic. I look forward to the members' questions.

An Cathaoirleach

Thank you, Dr. Janz, for that very strong opening statement. Dr. Trouton, I invite you to give your opening statement.

Dr. Konia Trouton

Good evening, and go raibh maith agat. I thank the committee for the opportunity to address it. My name is Konia Trouton. I am a clinical professor in the department of family practice at the University of British Columbia, UBC, and have been in practice for over 30 years. I speak to the committee today as co-founder and president of the Canadian Association of MAID Assessors and Providers, CAMAP. We are a charitable voluntary organisation that supports the people who do this work. I hope to convey to the committee that assessing and providing a death is a humbling and intimate experience that requires compassion, caution and diligence. I have shortened my stories from my written submission so I can respect the committee's time.

One of my more memorable patients was an avid outdoorsman who died of motor neurone disease. He put in a request when he was diagnosed and was struggling at home despite daily nursing support. By completing the Government-approved form, he attested that he was informed of his incurable illness, that he was suffering intolerably and that he was in an advanced state of irreversible decline in capability. I saw him alone in order to be sure he was not coerced. His respirologist had told him he was likely to need breathing support and a feeding tube in the months to come, yet he wanted none of that. He was connected with the palliative care team. I believed that he met the criteria for MAID and awaited the other assessment. I let him know how to reach me. I did not hear from him for over a year. At that point, I received a call from the palliative care unit at the local hospital. He was able to formulate only a few words at a time, but those words asked for MAID because he still wanted to be in charge after having no say in the disease that took his life and his independence. His wife and his daughter were taking turns with him at all times. He wanted assistance within a few days and, in fact, wanted to die on his birthday and with a blessing. The palliative care physician recorded that he maintained capacity and was focused on MAID. At his chosen time, I started the IV. With his wife and his daughter present, he had his final blessing and was able to say goodbye to both of them, knowing he had explored life to the full and lived as long as he could with a grave disability. He tolerated more interventions because of the good care and because he knew he could access MAID when he was ready.

What does this tell us about applying the law in Canada? An assisted death is requested by the patient and it is formal. It is not requested by a clinician. It is not requested by the family. It is required that the assessment confirms there is no coercion to make the request, so part of each assessment has to be done with the patient alone. The patient directs everything. They can change their mind, they can opt out, they can cancel and they are in charge until the last minute.

Next, the law requires two separate independent clinician assessments. Many of the clinicians who provide assistance in dying are not the treating clinician but are clinicians like me who care about choice, support autonomy and have added this to our other practice. The second assessment is done by the person who knows the patient best, namely, a family physician or a specialist. Between the assessments, however, the patient is generally looked after by others, whichever type of clinician is best suited to manage the patient's needs and reduce his or her suffering.

Third, the law requires very careful documentation. Those of us who do assessments and provide assisted deaths must report them to our local health authority and to our federal government within 72 hours of the event. There is no exception. We must liaise with the pharmacy team that dispenses the medication and review our documentation with it before it releases the medication. It is a carefully regulated process. If it is wrong, we risk discipline, court and jail time. If we get it wrong, we can lose our licence, our career and our livelihood. We must prepare each case and each document as if we were on trial.

The final point is that we recognise that death is both a physiological and a spiritual event. If a person believes in an afterlife, then meeting that next life with the relevant blessing is still possible, even when there is assistance involved in the transition. We cannot presume to know the mind, wishes or dreams of another.

I am not alone in experiencing this work to be professionally satisfying. Qualitative research studies and surveys have very similar findings. We are able to have intimate contact with patients and families and bring an end to suffering while supporting their autonomy and their choice.

What we are now working on in our organisation, CAMAP, is to ensure a standardised approach to assessments and provisions across Canada. No clinician is required to do assessments or to provide assistance to die. If they choose to do this work, however, it is important to be rigorous and consistent from one end of the country to the other. We have worked within the legislative framework of C-14 since 2016 and under C-7 since 2021. Throughout this journey, CAMAP has brought opportunities for networking with the professionals in our country who do our work. We have established position papers and guidance documents and, in the past two years, have developed a comprehensive multi-module MAID curriculum. To do that, we have engaged the input of all the national healthcare professional organisations and representatives from each province and each territory because it is they who implement the services. The curriculum is completely accredited and requires 80 hours to complete all the modules.

I will leave the committee with the thought that there is a lot of distracting noise in some of the sensational headlines about MAID in Canada. I believe it is done well and done according to the law by hundreds of compassionate, careful and thorough clinicians.

An Cathaoirleach

Thank you. I call Dr. Herx.

Dr. Leonie Herx

I thank the committee for having me. I am a palliative medicine specialist, clinical professor of palliative medicine at the University of Calgary and former president of the Canadian Society of Palliative Care Physicians.

In Canada the administration of lethal drugs to end life intentionally is called medical assistance in dying, MAID. This includes both euthanasia, where a clinician administers the lethal drugs, and assisted suicide, where the patient self-administers the lethal drugs. Over 99.9% of cases of MAID in Canada involve euthanasia.

At the outset of the Canadian euthanasia legislation, we were told that a "carefully designed and monitored system of safeguards" would limit harm and prevent wrongful death. Yet year after year there have been documented cases of non-compliance with safeguards and misapplication of both law and policy regarding MAID. The chief coroner of Ontario, the end-of-life care commission in Quebec and the correctional investigator of Canada have all reported on these issues. There is no real-time monitoring of MAID or stop mechanisms if red flags are raised. A recent report in the Canadian Journal of Bioethics concluded that the Canadian MAID programme has failed to provide Canadians with evidence to show that it is operating as mandated by the requirements of the law, regulations and the expectations of stakeholders.

In 2021, the Canadian MAID legislation was expanded to include people living with chronic illness and disability. For such cases without foreseeable death, a 90-day assessment period is required before receiving MAID, but experts agree that 90 days is wholly inadequate. Suicidality and depression peak around 90 days after a diagnosis of serious illness. Specialist care such as psychiatry, chronic pain and rehabilitation often requires much more than 90 days to assess and to see therapeutic improvements. Doctors are now facilitating suicide completion rather than providing mental healthcare and suicide prevention.

An actively suicidal patient with all the high-risk indicators for suicide completion was seen in my oncology clinic. Psychiatry was consulted and, rather than admitting the patient, as would have routinely been done before MAID, gave the MAID team phone number to the patient, stating that he was eligible for MAID and that it would be easier than committing suicide himself.

What happens if a severely depressed person refuses all treatment and support measures for depression and insists on obtaining MAID instead? I have seen a patient with an underlying condition that qualified them for MAID but their suffering was driven by an untreated major depressive episode. That person received MAID the same day as requesting to end their life, with no other supports provided.

In March 2024, our MAID law will expand to those with mental illness as a sole underlying condition, which will put more people at risk of suicide completion, especially those with structural vulnerability. With changes to MAID legislation and progressive interpretations of MAID law and policy over time, increasing numbers of Canadians are asking for and receiving MAID due to fear, loneliness and depression, social deprivation and isolation, lack of access to supports and adequate care needed for living, lack of access to parole for some prisoners, high cost of care and poor conditions at residential facilities.

The former federal Minister for disability inclusion, Carla Qualtrough stated to the House of Commons justice committee in Canada that “in some places in our country, it's easier to access MAID than it is to get a wheelchair.” MAID has been radically normalised as routine medical care. Some physician regulatory bodies and now Health Canada are recommending MAID be raised to all potentially eligible patients as one of the options. If a doctor offers unsolicited MAID, this may be all that is needed to push a vulnerable patient to want to end their life. Patients take the recommendations of their doctors seriously due to trust in their expertise and that doctors have their best interests in mind.

MAID has also had a profound effect on palliative care in Canada. Expressions of a desire to die are common and are expressions of grief, anger, loss or despair in response to a devastating diagnosis or change in condition. This lament or cry for help now often results in a MAID consult before palliative care has been involved. Recently, a patient was struggling with wanting to die and specifically asked to see the palliative care team but the MAID team was sent instead. This is not uncommon.

All healthcare facilities are expected to provide MAID, including hospices, whose core palliative care philosophy does not include hastening death. In Quebec, MAID legislation now requires all hospices and palliative care units to provide MAID. There are no euthanasia-free safe spaces.

A culture of silence has evolved around concerns with MAID. Family members and healthcare professionals who voice questions or concerns about safety are routinely dismissed as being anti-MAID or accused of trying to block access to MAID. Once MAID is legalised, it progressively becomes normalised as routine care and seen as a solution for virtually any form of suffering. I urge the committee to learn from our experience and not follow in Canada’s footsteps.

Chairman

I thank Dr. Herx. I invite Professor Downie to give her opening statement.

Professor Jocelyn Downie

I thank the committee for the opportunity to speak with it on the topic of assisted dying in Canada. By way of background, I am a professor emeritus in the faculties of law and medicine at Dalhousie University in Canada. I am a member of the Order of Canada and a fellow of the Royal Society of Canada and the Canadian Academy of Health Sciences. I have been researching and writing in the area of assisted dying since the 1990s. Further biographical information is contained in my written submission.

MAID came to Canada through the 2015 Supreme Court of Canada decision known as Carter in which that court unanimously struck down our federal criminal code prohibition on assisted dying, finding it breached our charter of rights and freedoms. The Supreme Court established parameters within which MAID must be permitted. The federal Parliament then established a detailed legal framework for MAID within an amended criminal code. MAID can be either provider-administered or self-administered. It can be delivered by either a physician or a nurse practitioner. It can only be provided if the person receiving MAID has been found to meet the eligibility criteria by two independent practitioners. One must have decision-making capacity and be an adult. One need not be terminally ill and one can be eligible for MAID if one has a serious and incurable illness, disease or disability; is an advanced state of irreversible decline in capability; and the illness, disease or disability and-or the state of decline in capability is causing an enduring and intolerable suffering that cannot be relieved under conditions acceptable to the person. There are numerous procedural safeguards that must be followed. All requests for MAID must be reported to the federal Government. The federal Minister of Health is required to publish a report annually. Oversight and monitoring of MAID also takes place in the context of provincial and territorial law and policy, as well as the regulatory practice standards set by the colleges of physicians and nurses.

I turn to the questions I am asked frequently by people in other countries trying to learn from Canada’s experience to inform their own. Have the eligibility criteria expanded over time? Has there been a descent down a slippery slope? No. The Supreme Court of Canada established parameters in Carter. MAID is not now, nor was it ever, limited to the terminally ill. Patients with mental disorders could be eligible for MAID under the Carter parameters. This description of Carter has been affirmed by the Court of Appeal of Alberta and the Superior Court of Quebec and acknowledged by the federal Government. Can people get MAID for poverty, loneliness, or other forms of socioeconomic vulnerability? No. It is a breach of the criminal code to provide MAID for this as the law requires that the person's enduring an intolerable suffering be caused by their serious and incurable illness, disease or disability, or their advanced state of irreversible decline in capability.

Furthermore, as demonstrated in the peer-reviewed literature, evidence shows that in Canada, as in all other permissive jurisdictions, recipients of MAID are, on average, socioeconomically advantaged and that, at a population level, socioeconomic vulnerability appears statistically to be inversely correlated with MAID. Do people choose MAID because they cannot get access to palliative care? No. Over 95% of those who received MAID received or had access to palliative care. Has the legalisation of MAID had a negative impact on palliative care? No. Funding and support for palliative care have increased dramatically since MAID became legal and more people are receiving palliative care today than five years ago. Are people getting MAID when ineligible or incapable, or for trivial medical conditions? Are patients being pressured by hospital staff to request MAID? These questions arise from widely disseminated media reports that, when you dig into the cases behind them, are based upon incomplete information, misinformation and disinformation. Contexts within which allegations can be properly investigated and tested reveal none of this. There are no reported cases of clinicians being charged or disciplined by their regulatory bodies for breaches of the law or practice standards, despite allegations, reports and exhaustive reviews.

In conclusion, I offer my opinion that the matter of whether and how best to design a MAID system has been thoroughly examined in Canada by parliamentary committees and expert panels with massive amounts of public consultation and engagement. Furthermore, it has undergone rigorous testing in the courts. It can be confidently stated that the Canadian system is effectively achieving its goals of upholding the autonomy and dignity of individuals, mitigating unwanted suffering and safeguarding the vulnerable.

Chairman

Thank you. I call Professor Lemmens.

Professor Trudo Lemmens

I hold the Scholl chair in health law and policy at the University of Toronto. I have been an expert witness for the Canadian Government in two cases related to Canada’s assisted dying law and I was a member of the Council of Canadian Academies' MAID expert panel. My work in this area focuses on the human rights dimensions and the professional regulatory challenges of MAID practice. I supported the first Canadian MAID law. I considered it a proper response to the Supreme Court Carter decision, which confirmed the role of the criminal law in protecting life but declared, and I emphasise, an absolute prohibition on assisted dying unconstitutional.

Parliament first carved out, as it was invited to do, so-called MAID as an exemption from the remaining criminal law prohibition in the end-of-life context but, under pressure from advocates for broad access, MAID practice quickly went beyond this context. The Government used a lower court decision to push through an expansion of the law to make it de facto available for disabled persons who are not dying. It did so notwithstanding opposition from almost all disability organisations, indigenous organisations and law, medicine and ethics experts, including three United Nations special rapporteurs on human rights, who warned that Canada’s law exposes disabled persons to systemic discrimination by exposing them to disproportionate risk of death.

I am increasingly troubled by the normalisation, even trivialisation, of ending of life as therapy for suffering in Canada’s MAID law and practice. In seven years, Canada has become the country with the highest number of euthanasia deaths at more than 10,000 per year.

Two provinces bypassed the percentage of euthanasia deaths of the Netherlands and Belgium, which legalised euthanasia in 2002. In Quebec, more than 7% now die by MAID. With the 2021 expansion of the law, which facilitates an early death of persons with disability who are not approaching their natural death, soon to include mental disability, this will further increase.

Advocates see this as a confirmation of the benefits of legalisation. They focus on access, not protection, with high numbers confirming consumer need. However, healthcare provider and state-funded ending of life is not a standard consumer good. It occurs in a challenging healthcare context, characterised by vulnerability, ambiguity, complex healthcare provider-patient relations, significant wait times for needed care, pressures on caregivers and family members, growing rates of poverty, discrimination, indigenous trauma and so on. This has largely been ignored by MAID advocates, or worse. Some have framed it now as an acceptable remedy for gaps in care and social injustice.

Official data raise concerns about why people opted to die by MAID. More than 35% held that being a burden on caregivers and loved ones created unbearable suffering. Some 57% indicated inadequate pain control or concern about that, whereas inadequate pain relief should be rare with good care. A further 54% felt they lost dignity, an experience influenced by societal messaging in healthcare settings and often ableist perceptions of the quality of disabled lives. One in five indicated loneliness and 3% even existential suffering.

The high number of MAID deaths is associated with several factors. I will enumerate some here quickly. First, vague access criteria are interpreted excessively broadly. Other jurisdictions have a terminal illness diagnosis with a six-month survival prognosis, offering at least some protection against premature death. Second, Canada’s main practice overwhelmingly involves physicians and nurse practitioners directly ending lives. This is associated with higher uptake than assisted suicide regimes. Third, MAID is explicitly not treated as a last resort in Canadian law. Contrary to the few other liberal regimes, and Belgium and the Netherlands in particular, healthcare providers do not need to agree that no other options remain. There is no obligation to make care or support available and try it first. Death has been transformed into first-line therapy for often only remotely disease-related suffering.

Individual case reports further illustrate the troubling normalisation of offering death to patients with chronic illness and disability, often in a context of troubling social injustice. I urge the committee to listen to these stories, some of which it will have heard, and watch some of the investigative fact-check media reports. I refer to the case of Kiano Vafaeian, 23 years old, who I met and encouraged, who has diabetes and resulting vision loss and who was saved only because his mother launched a public letter-writing campaign after discovering that his life was about to be ended by MAID. There is also Rosina Kamis, aged 41, who did not want to die but was isolated and lonely and struggling with tragic poverty, which made her chronical illness so much more challenging. These reports, as well as the data I just discussed, reflect the price we pay for an overly aggressive promotion of MAID in Canada. They should raise a red flag for other jurisdictions that are exploring broad legalisation of this practice.

I thank the committee for paying attention to our concerns.

An Cathaoirleach

I thank Professor Lemmens and thank him for being on time. Our first member is Deputy Alan Farrell.

Deputy Alan Farrell

I thank the witnesses for joining us. It is the middle of their afternoon, I believe. Where to begin? There is quite a bit of conflicting testimony, which is often difficult for members, particularly for those of us at the beginning of this process. We are certainly at the beginning of the legislative process and in the experience phase. I suppose I have to start with the ethical question in relation to what appears to be a firmly slippery slope that the Canadian people have experienced from 2015, that judicial case and the legislation that flowed from that. Could the witnesses outline what changes have occurred since that first piece of legislation enabling medically assisted dying and today? Are there changes planned?

A contradiction has been presented between witnesses, which places me in a very difficult position, as I am sure the witnesses can understand. Could they outline to the committee whether there are protections in place or whether some of the instances that have been read into the committee's record are the exception rather than the norm? I refer specifically to cases of individuals who are homeless and desperate and found themselves applying for medically assisted dying.

The only other question I have is for the disability advocates who are present. The proposal that has been outlined to us by medical professionals in Ireland who are in favour of legislating for assisted dying involves a set of circumstances in which an individual would only have access to medically assisted dying if they were terminally ill and had six months left to live, under various other certain conditions, including medical supervision. We are talking about a pathway such as that. How did Canada go from that ethical, medical standard to what is occurring at the moment? Perhaps I will start with Dr. Janz as she started us off.

Dr. Heidi Janz

I thank the Deputy for the questions. I am going to take the first one on how we progressed from the original legislation in 2015 to today. A big factor I am going to suggest in how we got from there to here is that the Canadian Government ignored disability rights activists who said that if we went beyond end of life, it would create this situation where a class of people is going to be considered essentially expendable if they have X, Y and Z. With all due respect to Dr. Downie, this is the reality for more and more disabled folk in Canada. My suggestion, to answer one of the other questions, is that if you feel like you need to legalise assisted death, you need to put ironclad guardrails in place saying that it is only for people at end of life.

Otherwise, you will end up in the same mess Canada is in. I am sorry but I forgot a couple of questions. Will you please remind me?

Deputy Alan Farrell

Dr. Janz broadly covered my questions. Part of it related to the ethical side of allowing a person with a disability to avail of medically-assisted dying. It was more a medical question in regard to the ethics, with which I have difficulty coming to terms, of the expansion that occurred in the past number of years and the further expansion to occur next year. Those were my two outstanding questions.

Dr. Heidi Janz

I work in an ethics centre at a university. When medical assistance in dying, MAID, was first legalised in Canada, a number of my colleagues raised alarm bells as this marked a fundamental shift in the relationship between doctors and patients. In my brief, which I submitted, I talk about the fact that MAID is being introduced into a medical system that is already plagued by systematic ableism, and for me there is a great ethical conflict in doctors providing MAID. The only possible solution is to make proficient a group of doctors who are allowed to abstain so that disabled people know they have safe doctors.

Deputy Alan Farrell

I thank Dr. Janz. Can some leeway be provided in order that a response to my question from another witness could be provided?

An Cathaoirleach

We will do that in the next round. I have to go now to Deputy Troy.

Deputy Robert Troy

I thank the Cathaoirleach and Senator Rónán Mullen for allowing me to change speaking slots. I thank each and every contributor this evening for bringing their respective perspectives to the debate. This is a challenging task. We have the responsibility of drawing up a report on what this country should do. I do not believe it is anyone's intention but the conflicting statements we received this evening highlight just how challenging this is. People come to this story with their own opinion. Nobody can have opinions on facts. Facts are facts. Figures and figures. Therefore, I ask contributors whether the number of people assessing medically-assisted end-of-life treatment increased year on year since it was introduced. That is not a matter of opinion. That is a matter of fact. Will contributors come back on that?

Dr. Herx said the head of the end-of-life commission in Quebec, Dr. Michel Bureau, recently stated that "we are no longer dealing with an exceptional treatment but a treatment that is very frequent" and that the commission has seen a slight increase in the number of cases that violate the legislation. One wonders whether that statement is based on facts and on the numbers of people availing of this treatment year on year. Will Professor Downie respond to that? Does she believe the head of the end-of-life commission in Quebec when he accepts that? Does Dr. Downie take that as a factual position? When we hear the head of the end-of-life commission saying that he sees a slight increase in the number of cases that violate the legislation, would any of the speakers this evening be able to indicate whether there has been any punishment where the regime has been violated?

Professor Jocelyn Downie

Yes, the numbers have increased year over year, which is to be expected when going from something being prohibited to being permitted. It will obviously go up from zero and then continue to increase as access increases and people understand that this is an available intervention for them.

On the second point on violations in Quebec, it is important for people to understand something here in terms of the law in Quebec as contrasted with the law in the rest of Canada. Quebec has its own legislation in addition to the criminal code. Its eligibility criteria are narrower than the criminal code. What we sometimes see in cases that relate to a potential breach of the eligibility criteria as opposed to, for instance, somebody’s insurance card expiring, which is the kind of thing included in the numbers, is that what is going on is the commission is responsible for ensuring compliance with the Quebec legislation, so if it sees something that is not consistent with the Quebec legislation, it has to send it over to the College of Physicians and Surgeons. Then the College of Physicians and Surgeons looks to see whether there is compliance with the federal law as well as with the Quebec law.

In Quebec, for instance, the eligibility does not include disability, but the federal criminal law includes disability. There is not, therefore, a breach of the federal criminal code even though something is reported over to the college. What Dr. Michel Bureau is referring to are not matters that are in breach of the criminal code, unless they are minor ones, such as expired card. There has not been any discipline against clinicians in Quebec because the college has investigated the cases that come over from the commission and has determined that they do not warrant discipline.

An Cathaoirleach

I call Dr. Herx.

Dr. Leonie Herx

I might ask Professor Lemmens to weigh in as well. From reviewing the regulatory authority reports from other provinces like Ontario, there are compliance concerns. In Canada, though, there is something we call passing the buck, where because it is a criminal code violation, it is sometimes seen as a police matter rather than a regulatory body matter. When families or others complain, it is difficult to get anything investigated and the complaint is passed back and forth between the regulatory authorities and the police. It is not a transparent process. There are large gaps in how concerns are being addressed in Canada and no one is taking responsibility.

Professor Trudo Lemmens

On the suggestion that there are no punishments, so there is no problem, other jurisdictions that struggle with euthanasia practices have documented how difficult it is to prosecute physicians. I will share with the committee an analysis by Belgian specialists who examined the only criminal law case in Belgium. It involved the prosecution of three physicians. They found that, on the basis of the court documents, there were serious problems with the issue of care, but the jury decided that the doctors were not guilty. I would not say that, since there are no criminal convictions, there are no problems.

The Canadian law is vague, so it is difficult to find a precise violation of criminal law. Regarding Dr. Michel Bureau in Quebec, an eligibility violation under Quebec law remains an eligibility violation and indicates a problem with the eligibility criteria being disrespected. The coroner in Ontario has found that there were cases where the law was not followed. In Quebec, a number of issues were identified. For example, Dr. Bureau states that advanced age is not a basis for medical assistance in dying - you should not be receiving that assistance just because you are old. This creates tensions with the criminal law provisions. Dr. Bureau also warns doctors in Quebec that they should not engage in physician shopping for a second assessment so that they can get an approval. All of this indicates that even the few more stringent monitoring bodies that exist are finding issues.

I suggest that members examine the case of Mr. Alan Nichols in Quebec, where the family complained to the Royal Canadian Mounted Police, RCMP. This happened under the first law when it was still restricted to reasonably foreseeable natural death. The RCMP did not know what to do with the complaint, so told the family that it was about medical practice and they should go to the Quebec College of Physicians. The college told the family that, unless the RCMP – the federal police – investigated, the college would not investigate as a professional violation of practice. The buck was being passed from one institution to another because they did not know how to deal with cases.

Saying that having no prosecutions means things are fine is a weak argument and does not hold up.

Senator Rónán Mullen

It worries me that there can be, as Deputy Troy mentioned, such a remarkable contrast in the analysis being given. I noted Professor Downie’s reassurance that there had not been sanctions and breaches, but to then hear that there were breaches in Quebec makes me realise that you cannot read one paper without reading the other in order to get the full picture. That is a challenge to us all.

I take from Dr. Trouton saying that she was not alone in finding this work professionally satisfying that she has been carrying out with MAID. Am I correct in that?

Dr. Konia Trouton

Yes. I am a MAID assessor and a MAID provider. I have seen hundreds of people, assessed them and provided that assistance to them.

Senator Rónán Mullen

Would Dr. Trouton be aware of reports from, for example, Belgium? Recently, I saw a documentary where people involved in providing assisted suicide or euthanasia were not comfortable speaking about it. There is research that up to one half of doctors who participate in an assisted death experience significant psychological and emotional distress. There are refusals by physicians in Canada to participate in assisted deaths, not on religious or moral grounds, but because of the emotional burden of enacting a patient’s premature death and an awareness of the psychological repercussions for themselves and their clinical teams. Does any of this research by people like Professor Brian Kelly, Dr. Tonelle Handley, Professor David Kissane and others strike a chord – actually, I will not say that, but “ring a bell” – with Dr. Trouton?

Dr. Konia Trouton

I am not aware of the particular research, documentation and findings in question. There have been some Canadian surveys and Canadian investigations that found that those who assess and provide MAID in Canada find the work very professionally satisfying and feel very supported by it. The overwhelming statement that I get from our members in the Canadian Association of MAID Assessors and Providers is that this is the most important, profound and rewarding work they do. They find it professionally satisfying to be able to help people enact their choice and enact what they feel is an important end to their lives. I find that most people are well supported, appreciate this work and find it very valuable.

Senator Rónán Mullen

Does it not trouble Dr. Trouton or Professor Downie at all that something like 7% of all deaths in some parts of Canada – I believe it is Ottawa, but also Quebec – are MAID? That would be seen as a runaway train by almost everyone in Ireland. It would amount to 2,500 deaths per year in our population. It would be in or around the number of deaths during Covid, and we all know how traumatic that was. Does it not trouble the witnesses that there was a 35% jump in 2022 in the number of people accessing MAID? Do they not believe that some people are losing the will to live?

Dr. Konia Trouton

On the contrary, people are finding out about the assisted dying option and recognising that it might be close to their natural deaths with the opportunity to have their loved ones around them at all times. As the Senator can imagine, we are such a large country that the opportunity to bring loved ones together can be difficult and complicated. I find that people have heard from neighbours, siblings, parents and others that they appreciated this opportunity to end their lives on their own terms. I find that word of mouth and witnessing the experience their own loved ones go through are positives. I believe that they find it rewarding to be able to access this option. Sometimes, they want to access it and not act on it. They want to submit a request for MAID and be assessed, but they may not go through with it. They find it calming.

Senator Rónán Mullen

Dr. Herx mentioned the culture of silence evolving around concerns with MAID. Is this a case of establishment buy-in? Perhaps Professor Lemmens will address this point as well. Once something like this is legalised, there is an establishment buy-in such that it becomes impossible to criticise it, and maybe this is why we are not seeing close scrutiny of regulatory breaches, abuses and so on.

Dr. Leonie Herx

It has been radically normalised and taken up by leaders. Within weeks of the legislation being enacted, for example, the associate deans of our medical schools made a statement saying that they would ensure that education on MAID was integrated into the medical schools’ curriculum, yet we had been advocating for over 20 years to get a curriculum for palliative care integrated. This shows a disparity at leadership level-----

Senator Rónán Mullen

Yes.

Dr. Leonie Herx

-----between MAID and dying in other healthcare services.

Senator Rónán Mullen

I am conscious of time, so I apologise for these quickfire questions. Will Professor Lemmens let me know whether a doctor breaks the law if he or she is the first to raise the subject of MAID and recommend it to a vulnerable person?

Professor Trudo Lemmens

It is not against the law. Actually, the Canadian Association of MAID Assessors and Providers has claimed that any person who might qualify should be offered the opportunity to learn about MAID.

If you apply that in the context of a person who is not dying, but who suffers from disability, I think most people with disabilities would be seriously offended to be told when going for care - and they fulfil the broad criteria of the law - that they seem to be suffering intolerably so their life can be ended. It is problematic and reflects a general attitude that has developed in Canada to glorify medical assistance in dying as the only way to die with dignity. People also say that large numbers are not an issue. We have 10,000 people who have died by MAID. Some 7% of people who die in Quebec die by MAID. The requirement of the law is that there has to be intolerable suffering that cannot be alleviated in circumstances the person finds intolerable. Nobody has been able to explain to me why there is such a high level of intolerable suffering in specific provinces. In Canada generally we now have a massive number of people suffering intolerably in a way that cannot be relieved. I tell them to look at the data in the Health Canada reports. These are self-reported data. They are not perfect, but they give an idea of what is going on. When more than 30% of people say they feel part of their intolerable suffering is being a burden to loved ones and others, to me that is a red flag. It is a red flag when more than 50% of people say they suffer intolerably because they have pain or fear pain. That means they fear they will not have adequate palliative care to end their lives. There are concerns about how this is being explained away.

Deputy John Lahart

Two points come to mind. Is it correct to say that the expansion of the facilitation of assisted dying, euthanasia, has been as a result of court cases that have forced legislatures to make changes?

Professor Jocelyn Downie

That is crucial to understand. We started with a court case. We started with the Supreme Court of Canada saying that people with a grievous and irremediable medical condition causing enduring and intolerable suffering must be allowed access to MAID. It cannot be prohibited. It set the parameters. We then had the first piece of legislation from parliament, which narrowed the boundaries and introduced the "natural death has become reasonably foreseeable" criterion. That was challenged in court by plaintiffs with disability. They argued it was discrimination on the basis of disability to deny them access to what people without disability would have access to. The court found that it was in fact discrimination on the basis of disability, as well as a violation of their section 7 rights, so it went back to the Carter boundaries. We then had C7, the next Bill, which shrank it again because it made an exclusion for mental disorders as the sole underlying condition. That is to come out automatically in March 2024, which would take us back to Carter. One has to remember that the Carter boundaries are established by the Canadian charter of rights and freedoms. Our parameters are set by human rights, and by the court's interpretation of what our human rights are, as opposed to the political calculations and analysis of what can get through a parliament. They are set by what the charter of rights demands of us.

Professor Trudo Lemmens

I will quickly respond to that because it is an important thing to clarify. This claim has been put forward in various settings by Professor Downie. I can share with the committee a letter signed by more than 20 law professors, and several constitutional specialists. I had a meeting this morning with the liberal caucus. I invited two colleagues with whom I do not have any professional relation. They do not work specifically on medical assistance in dying. They explained that this claim the Carter supreme court decision somehow set the law in stone, and that everything after was a restriction followed by a restoration, is constitutionally unsustainable. The Truchon decision was a lower court decision, and should normally have been appealed by the supreme court. However, the then minister for justice had voted against his own government's first law when he was a Liberal MP. He felt from the beginning that the law had to be expanded. It was a political use of a lower court decision, which was not appealed, that led to the government saying it needed to expand beyond the law. It was opposed by all disability rights organisations, several indigenous organisations and the United Nations. Human rights experts wrote to parliament to say that going beyond the end-of-life restriction opens up systemic discrimination. It is remarkable. I have been astonished at how the government was able to ignore disability rights concerns, and concerns from indigenous communities, which are faced with high suicide rates in particular communities. This has been ignored. I can share the letter signed by the law professors. I can share articles that make a constitutional analysis. It is not the case that we had an open law. The supreme court explicitly stated that an absolute prohibition on assisted dying is unconstitutional. However, it is now for the federal parliament, the provincial parliaments and the professional colleges to determine how to design the law that responds to the circumstances of the case the supreme court had in front of it. I just wanted to put that on the record, and I can share further information with committee members.

Dr. Heidi Janz

I want to emphasise two things brought up by Professor Lemmens. First, it was a lower court decision that has brought Canada to where we are. Second, every national disability rights organisation in Canada begged - and I mean begged - the government to appeal its decision. The government refused. That is why we are where we are. Please Ireland, listen to your disabled people.

Deputy Gino Kenny

I thank everybody for their submissions, and good evening from Ireland. My first question is to ensure I am interpreting things right. Any of the five contributors can correct me if I am wrong. Is anybody opposed to assisted dying, even in the most limited circumstances? If anybody opposes assisted dying in the most limited circumstance, maybe they could say it or indicate it. By that, I presume the majority of people online do not opposed assisted dying in limited circumstances.

I have a question about those who access MAID.

Perhaps this should be addressed to Professor Downie. How many of those people access palliative care before they access voluntary assisted dying?

Professor Jocelyn Downie

So 95% either access it or have it available to them, if they wish to access it.

Deputy Gino Kenny

So people go through palliative or hospice care and, at the end of that juncture, they may choose voluntary assisted dying?

Professor Jocelyn Downie

Yes, it is available to them. They may have palliative care right the way up to their medically assisted death. They are not always seen as being in opposition. They work frequently together. Many MAIDs happen in hospices and palliative care units. There are many providers who are palliative care clinicians. Yes, 95% either actually access it or they have it available but choose not to access it for a variety of reasons.

Dr. Leonie Herx

Professor Downie has made an important distinction. The data we have from Health Canada is self-reported by MAID providers. There is no way to clarify whether a person received palliative care. It could be the information they got about palliative care in terms of its availability is from the main provider. People only know what they are told by the person informing them. We have very poor data and those claims have been refuted by palliative care experts in our country. The facts do not exist to reassure us that everyone has had palliative care provided. Being informed about it is not the same as receiving palliative care.

Dr. Konia Trouton

When we do a MAID assessment, we are required to inform a person to inform a person and make sure he or she understands the option of palliative care. In my experience, many of the people are in a process of investigating and understanding what assisted death and palliative care means. Many people do take that detour and work complimentarily with the palliative care specialists to help them and ease their suffering as they go through the next trajectory of their illness. That is why we do have 20% of people dying in a palliative care unit with assistance because they are availing themselves of both. It is a requirement to both assess someone's access to palliative care and access to other sorts of services, so it is incumbent on us to make sure we check that out as part of our thorough assessment.

Deputy Gino Kenny

On public opinion in Canada, I presume there is support for voluntary assisted dying. There may be concerns about broadening the criteria. Even those who are in the middle of this debate will probably have concerns, and that is perfectly legitimate. I introduced a Bill on this issue three years ago. I fully support the personal choice of those who want to avail of assisted dying and think that is a fundamental human right, but there are concerns about certain situations. There never should be a situation where somebody must go without because of society or deficiencies in income or facilities. There should never be a situation where people must choose. As a socialist I have always campaigned for assisted living but I also believe in assisted dying where somebody is in a situation where they should avail of it.

We are trying to grapple with this issue. It is complex and complicated. In an Irish context, we are examining what happens in other jurisdictions where they have got this correct and where it is perhaps a bit more liberal. What lessons do the witnesses have for us as legislators who, in the future, may or may not legislate for assisted dying? What lessons have the witnesses learned about when assisted dying was legislated for in Canada, which is about seven years ago?

Dr. Heidi Janz

I would like to flag the issues. A major issue with the question raised about public opinion is that Canada, like most countries, is afflicted with widespread ableism. Therefore, we say that if you were to ask the public would you want MAID if you had to live with a disability and use a G tube to eat, I am sad to say the majority of people would likely agree. The problem with that is the message that sends to people like me who are disabled, which is that if you need to eat with a feeding tube, then you should be suicidal, and that is a no go for me. I am going to stop there. Thank you.

Deputy Alan Farrell

I am glad Deputy Kenny asked about public opinion because it is important in the context of this. I have a couple of questions for all of our witnesses on the basis of their answers to his previous question, which is that they are all in favour of assisted dying in some way, and while not necessarily what is being experienced in Canada, they all support the concept. Are there protests in Canada to change the law? Are there protests outside the offices or practices of practitioners of assisted dying or MAID in the jurisdiction? Was there a prohibition on a person assisting a person to end their own life if they were not capable of doing so themselves before the law changed in 2015? Finally, is it legal or was it legal prior to the change in the law in 2015 for a person to commit suicide or end his or her own life?

Professor Jocelyn Downie

Certainly so. Regarding protests outside offices, no, because the vast majority of Canadians support medical assistance in dying. I remember there were protests outside the courtroom when we were doing the Carter case at trial, but it was a minority and the majority solidly over time support-----

Deputy Alan Farrell

Sorry, let me clarify my question, Professor Downie, and thank you for that answer. My question was more to do with protests outside Parliament as the law has progressed over the years. Professor Downie said there have been two iterations. My question was also whether there have been protests outside the medical offices of MAID practitioners on a weekly, monthly or annual basis over the past seven years.

Professor Jocelyn Downie

No to the latter. To the former, there would be some protests as Parliament is considering different changes. To the Deputy's other questions, it was prohibited to assist somebody prior to the Carter case. There was a prohibition under the criminal code for anyone to assist someone to end their life by suicide. Ending your life by suicide, however, was not illegal.

Deputy Alan Farrell

No, but assisting a person was. Okay. I thank Professor Downie. I see Dr. Trouton is raising her hand.

Dr. Konia Trouton

Just to support what Professor Downie said. There have been no protests outside clinicians' offices or premises of work. In fact, this has been more universally accepted than abortion care in Canada. It is incredibly well supported. In fact, the practitioners talk about it in social situations, in other contexts and in professional circumstances. They are not ashamed to talk about it. They talk about it very proudly with their peers and loved ones, that they do this work and have jumped into it. They do it on the side of their regular work. There are a number of professionals who do this in a semi-retired capacity and that is all they do. There are some who do it in addition to their regular work. There are a number of itinerant providers around the country. That is the strength of it, that it allows people some flexibility with how to work. I would encourage that and recognise that it is an important way that MAID is practised in this country.

Dr. Heidi Janz

I am going to call on the help of Professor Lemmens because he talks faster than me. On the topic of protests, MAID was expanded upon in the middle of Covid-19 so we physically could not protest. We did organise and we did make a disability filibuster online. I am going to ask Professor Lemmens to talk about that more because he talks faster than me.

Professor Trudo Lemmens

It is an interesting question, were there no protests. The law was expanded in the midst of the pandemic so the committee can see already what kind of challenge that raised for persons in the disability community. It was virtually impossible to get together and protest in Ottawa. There was a disability filibuster organised online which was well attended, where people testified. I listened in to some of these testimonies and many of them were heartbreaking, with people in the disability community expressing concern about what it meant for them that people were now telling them there would now be a fast-track procedure for them to access dying. I would urge people to be careful about saying there is broad popularity. When we are talking about human rights, we are not talking about majority opinions about whose life is worth living. The disability community is deeply concerned about the normalisation of dying, particularly targeting persons with disabilities as if they really need it. The community at large, outside the end-of-life context, is saying this should not be offered particularly to them. I would express concern. This may also be a question. There seems to be an acceptance that people are all in favour of assisted dying. I am certainly not in favour of the current Canadian law, as members can see.

I have also become increasingly concerned about how we have seen a shift in the mentality and thinking about what it means when physicians are involved in ending the life of persons because of disabilities or chronic illness. I am concerned about what that means for seeing the role of medicine and accepting the limits of medicine when it comes with complex concepts such as suffering. I would say we have to be careful about saying there is broad support in the Canadian community. There is certainly broad support for the initial law. There was less support for the expansion outside the end-of-life context. I think in the last years we have seen a growing expression of unease and a growing awareness among people in the community at large that there are problems with the practice. There are certainly still a majority of people, I would say, deeply concerned about the expansion that is due to take place in March 2024 in the context of mental health. This is not an uncontroversial practice in the Canadian context; far from it. There is a groundswell of expressions of concern certainly at some of the practices we have witnessed. When we are talking about human rights and disability rights, it is not about majority rule.

Senator Rónán Mullen

I note Dr. Trouton used the phrase "abortion care", which is still quite a controversial phrase in this country. It made me wonder whether, if we change our law in Ireland, we will in the future use a phrase like "euthanasia care". Would we use something like "medically assisted in dying"? It seems to me that language is key here and language seems sometimes designed to sanitise and make acceptable. To Professor Lemmens's point about the wide support, there could be increasing support for euthanasia or assisted suicide in the context of diminished access to quality palliative care or quality healthcare, and of rising levels of despair and less hope in society. Future wide support if we enact a change is not necessarily good news for society.

Professor Downie said that over 95% of those who received MAID received or had access to palliative care. Access is not the same as getting it. There is scholarship to say that in Canada, less than half of patients who participate in assisted suicide or euthanasia see a specialist palliative care team. Only 15% of Canadians have access to publicly funded palliative care at home. Three quarters of people would benefit from palliative care, it is reported, yet only one in five Ontarians gets a physician home visit or palliative home care in their last year of life, and only half receive palliative care in any setting. Does that not paint a less reassuring picture than the one Professor Downie gave?

Professor Jocelyn Downie

I do not think so. What is getting blurred there is the delivery of palliative care in a variety of different contexts, for one thing. One of the things we have seen is that, for those going through the process of MAID, there is this 95% rate which is higher than people out in community who are perhaps not interested in MAID, those whose life circumstances are such that they could benefit from palliative care but who are not ready for MAID or do not want it. A lot of those numbers just got blurred together. I do think we can take great comfort in the 95%. We have to be careful about this notion that they are just self-reported. All deaths are reviewed in 90% of cases. We have British Columbia, Alberta, Ontario and Quebec, which are the most populated provinces in the country.

Senator Rónán Mullen

I was referencing a paper from the C.D. Howe Institute. I thought it was a very troubling, low level of physician home visitation and palliative home care. It suggests to me that all is not well. If I may just draw on what was asked by my friend and colleague, Deputy Gino Kenny, whether everybody there would be in favour of a more limited model of assisted suicide, such as is often cited here in respect of various American states such as Oregon, three out of five of our guests on the Canadian side would probably grab with open arms any attempt to row back on the law. The question I have is for those of our guests who do not support Canada's existing law. They have described the erosion of safeguards and restrictions through practice and vague regulation in the first place, through courts not acting where breaches are reported and the ignoring of regulations, the campaigning for the removal of safeguards and their eventual removal. One of the speakers described situations where those who do dissent in the medical profession are accused of trying to block access.

I recall Professor Theo Boer from the Netherlands, a person who was initially involved in monitoring and supported the Dutch euthanasia law, stating he has come to the point where he does not believe in any attempt to regulate this into existence because of the social impact and the effect it has. Do those witnesses who oppose the existing Canadian law feel in a position to reassure us in Ireland that were we to attempt to enact legislation along the Oregon lines, that is, assisted dying, with the doctor not directly doing the deed, if you will forgive my language, and with some assessment of prognosis in the context of terminal illness, the line could be held, in light of their experience?

An Cathaoirleach

Who does the Senator want to respond?

Senator Rónán Mullen

I will throw it out to any of the speakers, but it makes most sense to put it to the witnesses who were critical of the existing law.

Dr. Konia Trouton

I might comment on the Oregon model, which allows for self-administered assisted dying. In Canada, we have seen little of that. In fact, last year, there were 10,064 intravenous administrations and only seven self-administered forms. The reason for that is that we in the Canadian Association of MAID Assessors and Providers feel it is important, and advise, that a clinician be present even when people self-administer. At the time people are ready to avail of assisted death, they are often too weak to drink something or have a substance administered through a PEG-J tube, so the participation and help of a clinician is essential to be able to administer that medication effectively. Moreover, there have been a couple of cases where the medication has been brought home and been held in place where somebody else could have ended up using it, so it is important we know and can support our patient to use the medication effectively by intravenous administration. I would advise against having it limited to the self-administration form, which can lead to more complications and can prevent those people who want to have assistance from having it because they do not have the strength or physical capacity to take the medication themselves.

Deputy John Lahart

I have found these contributions useful at least from the perspective of this not being where I want to go. I have a reasonably open mind, although as to how open, we will discover in time, but the Canadian model seems to have happened by accident. I think MAID is such an unfortunate acronym. I may sound preachy and I want to respect all the witnesses, but I just think of a maid and, stereotypically, a maid was someone who did the bidding of their elders or betters. The main aspect I take away from the discussion probably relates to how comfortably the witnesses use the term, and I would hate to get to a position where we were using such a term so comfortably. It actually upsets me. Nevertheless, I thank the witnesses for giving us so much of their time. I do not think we have previously had witnesses who have been at such polar extremes in terms of their contributions. Canada's reputation in the world has always been one of the quiet neighbour to the United States, so I am taken aback at how this has progressed so quickly. I can speak only for myself but I am in a different space. I consider myself to have a reasonably horizontal view of the world and to be reasonably informed and reasonably read, but the Canadian model as enunciated is something with which I would feel distinctly uncomfortable.

Deputy Gino Kenny

My first question relates to lessons we can learn from Canada. As legislators, as I said earlier, we are trying to address this issue as a committee. On many occasions, popular support has been expressed in Ireland for changing the law on assisted dying. There is popular support in Ireland, Britain and most other European countries. As legislators, we have to listen to popular support, although it does not, obviously, dictate everything we do. We have to listen to people because, as we have seen in the case of many social issues in Ireland, popular support and public opinion are way ahead of politicians on a lot of issues, and in this case public opinion in Ireland wants to see legislative change.

What lessons do Professor Downie and Professor Lemmens have for us as legislators in respect of how we can tackle this issue and go forward in a compassionate scenario where people might find themselves? To me, that is the most important message of this committee. If we are to change the legislation, the most important person in this whole debate is the person who may find themselves in that situation of wanting to avail of assisted dying. That is the most important aspect of this debate.

Professor Jocelyn Downie

I am glad the Deputy has come in for a second round of questions because I had some thoughts when he asked something relating to this earlier. We are getting caught up in some of the internal debates in Quebec, Canada, as we face mental disorder MAID potentially coming in March 2024 and the disability work. Ireland is in a different place, so I want to offer a couple of ideas about lessons learned that do not relate to this disagreement the committee is seeing today. If, for instance, Ireland decided the law would be much narrower than that in Canada, or even broader, one of the lessons is that it should clearly define the terms in its legislation. If they are vague, that will cause confusion and controversy.

The second lesson is that Ireland should work with clinicians in advance to ensure the wording is understandable to them, because they are the ones who are going to have to implement it. Our Government put in a reference to a natural death having to have become “reasonably foreseeable”, and clinicians reacted by asking what on earth that meant, which got everybody off on the wrong foot. Work needs to be done with clinicians such that the Government should specify the boundaries it wants to draw from a public policy perspective and decide how it should express them in a way that clinicians can implement them in clinical practice.

Furthermore, it should ask them whether the way the system is being set up is clinically feasible and whether they foresee problems in how it is framed. As a concrete example, our law initially said express consent had to be given immediately prior to the provision of MAID. That is understandable from a philosophical and ethical perspective, but it created a need for people to die earlier than they otherwise wanted to because they were fearful of losing capacity. A woman named Audrey Parker was in this circumstance.

She had brain cancer. She wanted to try to live through Christmas and the new year but she was fearful of losing capacity. She was fully eligible. She met all of the eligibility criteria because she had advanced breast cancer that had become brain cancer and so on. She wanted to try but she was at risk of losing capacity. She raised this issue and the Government listened. It realised that this was not related to the broad request-for-MAID issue but to a more narrow issue of people dying earlier than they want. She died on 1 November instead of trying to get through Christmas and the new year because she was fearful of losing capacity and therefore, of losing access to MAID. The Government listened and included something called the final consent waiver. Under this waiver people who are fully eligible for MAID and who are what is called track 1, that is, their natural death is reasonably foreseeable, can make an agreement with a clinician that if they lose capacity, they will get MAID. Ms Parker could have said that if she lost capacity before Christmas, she wanted MAID but if not, she would try to live longer. That is an example of a case where clinicians could have anticipated the problem and helped the politicians to draft the legislation in a way that would have avoided that problem that nobody wanted. Quite apart from all of the debates about disability, mental disorders and so on, it is important to have that communication so that the Legislature can most effectively implement the parameters that it decides it wants to have.

My final piece of advice relates to communication. It is important for the committee to communicate with the public about what is going on in other countries and the reasons for the decisions it is making. It is very important to go to the primary sources. What this committee is doing is interacting with groups of people who are presenting to it what the primary sources are saying. The committee should go to the primary sources itself and then it will be able to articulate to the public its reasons and the evidence behind its decisions, not by referring to me or to any of the other witnesses today but to the primary sources of evidence about what happens when a country proceeds with MAID.

Professor Trudo Lemmens

On the question of what to do, I would say that in Canada we saw the remarkable development of a law that initially tried to focus, as the Supreme Court did, on the case of a person who was approaching her natural death. The focus was on cases that understandably evoke sympathy and on circumstances in which many people might want to control the dying process. However, as legislators, the committee must be aware that there will be pressure to expand and to enlarge, that there are particular implications for the medical system as a whole, for the doctor-patient relationship, and for the comfort that persons with disabilities will feel in the medical context when one starts to focus on a system where physicians are providing the ending of life.

It is undeniable, if one compares the systems of Belgium, the Netherlands and Canada with other assisted suicide regimes, that when a doctor provides the assistance the numbers will be higher. I find that I am now going in the direction of Professor Boer, having looked at the system in Oregon. I would urge the committee to look at the data as well. Is it worth changing a clear line in the sand when there may be problems along the road? Is there another way of dealing with issues? I must say I am not convinced that there are so many cases where the provision of the ending of life was the only solution and that there were no other ways to address the suffering of those patients. I would say that the committee must think carefully. It must also inform the public about the price that would be paid if the decision is to go in a certain direction. In that sense, Canada is an interesting country to look at.

I appreciate the comments of Deputy Lahart on the term MAID. I hate it as well. I am uncomfortable with the fact that it has been used to make it more acceptable. I had discussions about this with my mother-in-law who lives in Quebec. I had to explain to her that MAID is the same as what they have in Belgium and the Netherlands, which is euthanasia. At the beginning, people asked who could be against medical assistance in dying. Who could be against assistance in dying? Now we have a system that is outside of the end-of-life context. The term is really ridiculous. We are not talking about medical assistance in dying. We are medically inducing the death of people who are not dying. The term is problematic and I would say that we should call things for what they are and use the appropriate terms. In the Netherlands, people are much more upfront about this. We should say what it is and have a discussion about it with the terminology that is appropriate.

Dr. Leonie Herx

To add to what Professor Lemmens has said in the context of take-away messages, we have an increasing number of doctors in Canada who have growing discomfort with where the Canadian MAID regime has gone. It has moved well outside the end-of-life context. They are also uncomfortable with the way that it is being offered as a solution to a lack of access to care. I can give the example of a patient who was offered MAID because there was no bariatric bed available in a hospice. Contrary to what the committee has heard today, MAID is being offered in cases where there is a lack of access to care.

In terms of protests, I did not get a chance to say earlier that over 1,400 doctors signed a petition during Covid, with the expansion of MAID outside of the end-of-life context, to say that what was being offered was not medical assistance in dying but medically administered death, that the people involved were not at the end of their life and that this was not the role of medicine. A lot of literature was written on the subject but that was the only type of protesting or demonstrating that we could do during Covid. I would be happy to send the committee those references. Of course, as the committee knows, the disability community has also made significant protests as well.

Finally, I would like to comment on Professor Downie's repeated quotes about the number of people accessing MAID with palliative care being 95%. That is not factually correct. Approximately 30% to 40% of people have had either no palliative care at all or only had such care offered at the time of making the decision to request MAID, which is far too late. I will also send the committee those references which show how that is actually inadequate care, a failure of the medical system and a form of medical error because that is too late to be offering palliative care. In fact., approximately 25% to 30% of people have had no palliative care whatsoever. Again, I can send on those references.

Dr. Konia Trouton

In regard to the controversy around the data on palliative care, the annual report from Health Canada is quite helpful. The Health Canada data are the reported data on MAID deaths and they include data on palliative care.

I want to emphasise the point that requests for assisted dying come from the patients themselves. Let us turn back to that fundamental starting point for assisted death. It does not come from a practitioner saying that a patient must or should do this; it comes from the patient accessing the information, filling out a form, getting a witness to witness the request and submitting it. It does not come from the MAID practitioner. It never comes from those of us who are providing the assistance; it comes from the patient. That is fundamentally the beginning point and that element of education for the public is incredibly important. People might feel that is their only option but they may not qualify or be found eligible. That information is absolutely essential.

In terms of what is essential for the committee to consider in the context of putting a law into place, one is the need for standardised and thorough training of all of the clinicians that do the assessing and the provision. That is a different group of people from the group of people who might be telling patients about it or informing them of what is assistance in death. The way in which such assessment and provision is documented is not the same as for any other medical care. It is documented very differently to make sure that clinicians attend to every single aspect of the law and understand each element of it. It is a different kind of process and that is crucial. Also crucial is understanding that capacity is correctly obtained; in other words, that the patient does have the capacity to make the decision and is aware of all of the options. Documenting that and allowing practitioners to network together is essential. That is what CAMAP had to do. We had to create a network of clinicians who were voluntarily coming forward and wanting to do the work because not every clinician wants to do this work. They are coming from a wide variety of backgrounds. I do not come from a palliative care background. I have colleagues who come from neurology, cardiology and so on. Clinicians come from a wide range of backgrounds and it is important to let those people network separately because there will not be a pre-existing organisation.

Dr. Heidi Janz

I would like to speak on what Dr. Trouton brought up. The assertion that MAID is never brought up by providers is false. We have numerous reports in Canada, some of which have been included in my submission. I can send others to the committee. Practitioners have raised questions. However, it is not just doctors who have raised questions. Social workers and Government officials also bring up MAID. It is misleading to suggest that MAID is always raised by the person first. It is not.

The Canadian Government has not brought out a total and complete set of data. The data set is not complete and has not been complete since it was brought to the Canadian Government, even though it is supposed to be complete. This is something that the Canadian Government keeps promising but has not yet brought forth. It is something that disability rights activists have asked for repeatedly but it has not happened. The Government here should consider, when it is designing its law, the issue of reporting and having specific numbers because in Canada, we do not have those numbers. We do not know exactly how many people it is affecting.

An Cathaoirleach

Thank you. On behalf of committee members and the secretariat, I thank Dr. Janz, Dr. Trouton, Dr. Herx, Dr. Downie and Professor Lemmens for coming before our committee this evening and for making the effort to give their evidence, which we very much appreciate. You have given us a lot of good view points from the Canadian experience, be it good, bad or whatever. It is our job to take on board what you have said. We really appreciate your time and effort. I thank you all most sincerely.

The joint committee adjourned at 8.54 p.m. until 10.30 a.m. on Tuesday, 24 October 2023.