August 10, 2021
The Physicians’ Alliance against Euthanasia has participated in the debate around what is now called “medical aid in dying” (MAiD) since 2012, and many of our individual members long before that. The Alliance has a membership of over 1100 physicians[i] who have signed our Declaration[ii] on optimal end of life care without euthanasia. Although we oppose all euthanasia on medical and philosophical grounds, we understand that the mandate of the present Committee is not to reopen the debate that took place before the Act respecting end of life care was adopted, but rather to consider the advisability of extending MAiD to new groups of Quebecers.
Distressed as we were by the Gladu-Truchon court judgment in 2019 and the Quebec and federal government’s refusal to defend their own laws by appealing it, opening the door to MAiD for people who are years or decades from the end of their life, we did not expect less than two years later to be fighting for the lives of two such marginalized groups of citizens as those with mental and neurocognitive disorders. However it is not entirely unsurprising; there is no doubt that many of those who lobbied for MAiD legalization in extreme situations at the very end of life a few years ago had every intention of then working piece by piece toward euthanasia on demand in all circumstances. We are almost there.
No one comes to the table without a preconceived position, or “bias”, for or against MAiD. One either considers it such a great benefit to those who choose it that the risk of premature death of others must be accepted, or one considers every deliberate premature death a harm to be avoided. Those who claim to be neutral on this point are deceiving themselves and others.
Some may consider the views of our Alliance irrelevant to the current debate because of our opposition to “medical aid in dying” in all situations. However, to exclude us for that reason would require also excluding all those who are at the opposite pole of the debate.
By far the most rigorous and extensive study of whether “medical aid in dying” should be an option for people whose only medical condition is a mental illness, and for people incapable of decision-making who made an advance request for it before losing capacity, was that undertaken by the Council of Canadian Academies in 2018 at the request of the Canadian government.[i] The panels on both questions were composed of academics across fields of expertise and with a broad range of opinions on MAiD. Both panels produced 200+-page summaries of the available evidence, and both refrained from making recommendations, citing the lack of sufficient evidence on the safety of allowing MAiD in these situations, both for individuals and for society.
The most outspoken advocacy against Canada’s recently-adopted Bill C-7 removing the end of life requirement in the law has been from groups representing disabled persons. They rightly reject being specifically targeted for suicide assistance instead of prevention on account of their disability. An open letter signed by 129 member organizations and allies of the disability rights community[i] was ignored by the Canadian government. Disability groups went to the extent of holding a 24/7 online “filibuster” in the last week of debate on the Bill[ii], to no avail.
Another vocal source of opposition to Bill C-7 was from Indigenous leaders, who invoked the suicide epidemic among their young people and anti-Indigenous racism in health care, situations which would put their people at grave risk should MAiD become legal for mental illness.[iii]
MAiD for people whose sole medical condition is a mental illness were specifically excluded by Bill C-7 until February 2021, when a Senate amendment including it was accepted by the House of Commons without studying the question or hearing witnesses on it. All the study prior to February 2021 was of a Bill that explicitly excluded mental illness as an indication for MAiD. The role of the (unelected) Senate is not to add radical new elements to government Bills, but to review, refine, and if necessary return them for further study.
The Canadian Mental Health Association (CMHA) and the Centre for Addiction and Mental Health (CAMH) both oppose MAiD for mental illness.[iv] [v] A committee of the Canadian Psychiatric Association adopted a neutral position on MAiD for mental illness in 2020, without consulting the CPA membership, despite their last survey in 2016 showing 75% opposed.
The much-discussed report of the Association des médecins psychiatres du Québec (AMPQ)[vi] was also written by a small committee. It quotes a survey to which only 263 (20%) of 1300 psychiatrists responded; 36% of these objected to MAID for mental illness in all circumstances. A majority said it would take at least five years of active treatment before one could conclude that further treatment may not produce added benefit; 42% thought it would take at least ten years. Their stated mandate, at the request of the Collège des Médecins du Québec (CMQ) and the Commission des soins de fin de vie (CSFV), was to determine “the circumstances in which a person with only a mental disorder as their sole underlying medical condition (MD-SUMC) could access MAID”, sidestepping the question of whether it is an appropriate “treatment” for mental illness at all. The report states both that the AMPQ does not promote MAiD for mental illness, and that patients whose sole underlying medical condition is a mental disorder should not be excluded from it, leading to much confusion.
The question of MAiD by advance request for people with neurocognitive disorders (dementia) was vehemently opposed by three prominent geriatricians in a letter to Le Devoir[vii] supported by 200 other health professionals who work with elderly patients.
Medical aid in dying for mental illness
It is said that doctors can distinguish between a rational request for MAiD in a psychiatric patient and a desire for suicide. No evidence has been presented in support of this claim, and probably none exists. The Council of Canadian Academies panel concluded that it is impossible to distinguish between the two. The Canadian Association for the Prevention of Suicide states: “… the risk of overlap [between MAID and what we traditionally understand as suicide] increases precipitously for those seeking MAID for chronic, non-life threatening conditions and, in particular, for mental disorders.”[xii]
Society and medicine, especially psychiatry, have for centuries invested time, effort and resources into preventing people from taking their own lives. This is an important effort because the life of each citizen is valuable. It is important because virtually all suicide attempts are due to transient loss of hope, often due to mental illness. In Canada, of all those who attempt suicide each year, only 23% try again, and only 7% complete suicide.[xi] Why should doctors enable suicidal patients’ death, with a 100% success rate?
Psychiatrist Dr. John Maher, expert in serious and persistent mental illness, writes[xiii], “The Canadian government defines suicide simply and clearly as, “the intentional action of ending one’s life”. MAID is suicide […] Those who claim suicide is impulsive and violent, while MAID is well thought out, peaceful, and dignified, are arbitrarily redefining what suicide is. Social engineering always begins with language engineering. Suicide is taking steps to cause your own death, whatever the steps. 75% of people plan their suicide, and many are completed with care and consideration of the impact on first responders and others. The characterization of all suicides as compelled, impulsive, and violent is factually wrong and perpetuates media stereotypes.
“What is clear is that suicide is a raw agony for loved ones. The trappings of medical comfort and the mutual pretense of moral exoneration that the staging of the MAID event promises cannot diminish this sorrow. In fact, it can serve to inflame the wound through the betrayal by both medicine and state.”
The availability of MAiD interferes with recovery. It sends the message that suicide can be an acceptable medical treatment. Psychiatrists are already hearing patients ask why they should persist in trying to recover when MAiD will soon be available for their illness.
It was said by proponents during the C-7 debate that MAiD for psychiatric patients would be only for those with “irremediable” psychiatric illness as required by Canadian law. The Quebec Act respecting end-of-life care requires that the illness be “incurable” and in an “advanced state of irreversible decline in capability”, leading to “constant and unbearable physical or psychological suffering”.[xiv] The terms irremediable, incurable and unbearable are not interchangeable, leading to much confusion in the literature studying these issues. An incurable illness, such as diabetes, chronic lung disease, or indeed, schizophrenia, may with adequate treatment be far from unbearable, so is not irremediable.
A scoping review of articles about irremediable psychiatric suffering in the context of physician-assisted death, published in the Canadian Journal of Psychiatry in 2020[xv] found only 5 empirical studies that examined a total of 310 patients seeking MAiD. None examined the impact of psychiatric care, and two included evidence that patients were refusing potentially effective treatments in favour of MAiD.[xvi] At least one study used only low-intensity outpatient antidepressants without any of the additional treatment options available for resistant depression. Whether mental illness can ever be truly irremediable remains an untested question.[xvii]
Moving from study data to the individual patient, it cannot be said that the illness leading to a desire for death is irremediable, or incurably unbearable, if all other options have not been tried. These might include expert psychotherapy, referral to subspecialist psychiatrists, hospitalization, light therapy, electroconvulsive therapy (ECT), transcranial magnetic stimulation (TMS), ketamine and other emerging therapies. Not all these interventions are reimbursed by the public health system, and some are very expensive. Waiting times, even for standard psychiatric evaluation and treatment, can be up to several years. Psychotherapy in the Quebec public health care system is of variable quality and is limited to ten sessions. Private psychotherapists charge up to $200 per hour. An inexperienced psychiatrist or psychotherapist may easily internalize the patient’s despair and conclude prematurely that the illness is irremediable and the desire for death rational.
This leads to the thorny question of access to mental health resources. No one can dispute the tragic situation of Quebecers who need non-existent mental health care; or care that is inaccessible to them because the public purse doesn’t pay for it and their illness renders them unable to work consistently and effectively; or because they would need to travel to another region to receive it; or care that will be available only in a few years, after multiple suicide attempts and after their family and professional life has been inalterably damaged by their illness.
As politicians’ promises of ensuring palliative care access while legalizing MAiD at the end of life, were broken, we are now hearing heartfelt promises of improved mental health care, with a quick exit through MAiD for those who still can’t get it. To end of the lives of people who suffer because society cannot or will not ensure a decent and dignified life is an abdication of our responsibility to them.
We are told that it is discriminatory to not offer MAiD to people suffering from mental illness. On the contrary, it is the height of discrimination to offer it to them while not offering adequate treatment and social support.
We consider the Canadian government’s legalization of MAiD for mental disorders as of March 17, 2023 through Bill C-7, to be rash in the extreme, especially as it happened by the government accepting a Senate amendment with no study or consultation. We appeal to the Government of Quebec to show greater prudence than the federal government in this delicate question.
Since MAiD will be legal for mental disorders across the country in two years, we recommend:
1. Rapidly increasing mental health research and professional training, and clinical services for people with mental disorders;
2. Considering all requests for MAiD on the basis of mental disorders to be expressions of cognitive distortion and suicidality due to the illness;
3. Prohibiting any health professional proposing MAiD to a person with mental illness;
4. Requiring that all available treatments for the illness have been attempted, including novel treatments and those not available in the region where the patient resides, before considering MAiD in this population.
5. Requiring that at least 10 years have passed, with adequate active treatment, before considering MAiD;
6. Creating a committee of experts to examine all request for MAiD on the basis of mental illness alone, before the death, not after. Require the committee to hear evidence from experts who must evaluate the patient and report on the diagnosis, the adequacy of treatments already received, the possibility of further effective treatment, and the effect of the illness on decision-making capacity.
Medical aid in dying by advance request for persons incapable of decision-making
Nobody wants to get old, but everyone will unless they die young. Nobody wants to lose autonomy, but most of us will, in different ways, depending on the specific illness or condition that eventually leads to our death.
Nobody wants to develop dementia, but some of us will. Interventions to prevent dementia require lifelong implementation of lifestyle choices and are not guaranteed to be effective. Pharmacologic treatment for dementia is so far symptomatic only, and does not alter the ultimate course of the disease.
Thus our youth-worshipping and dependency-fearing society seeks another way of trying to avoid dementia: Kill me when I get there. But since a person with dementia may have lost capacity to understand the decision when the time comes, the ultimate solution has become: I sign now, so you can kill me later. But this is far from being as simple as it seems.
As noted in the Commission’s consultation paper, Capacity to consent to care is one of the fundamental guidelines of the Act respecting end-of-life care.[xviii] Indeed, the requirement of obtaining a patient’s free and informed consent before undertaking any medical examination or treatment is undisputed in contemporary Western medical ethics, treatment without consent being a crime of assault.[xix]
For consent to be considered valid: it must be voluntary; the patient must have the mental capacity to consent; and the patient must be properly informed.[xx] Consent is informed when the patient has received and understands detailed information on their diagnosis, including any uncertainty about it and other possible diagnoses; the nature of the proposed investigations or treatments, the chances of success, available alternative treatments and their risks, and the potential consequences of leaving the condition untreated.[xxi] None of this information can be provided in advance for an unknown future health condition.
We use advance directives to avoid technological interventions that are likely to be ineffective and burdensome and that must be decided upon quickly. Advance medical directives in Quebec law allow for acceptance or refusal of cardiopulmonary resuscitation, ventilator-assisted breathing, dialysis and forced or artificial feeding or hydration. [xxii] They do not allow one to demand a particular treatment.[xxiii] The legislator wisely did not broaden the scope of these directives, given the serious difficulties with informed consent that would ensue.
The law does not however require full discussion of diagnosis, potential risks and burdens, or determination of patient decision-making capacity and freedom from coercion before signing an advance directive. It can simply be downloaded from the internet and signed before two witnesses or a notary.[xxiv] It is not possible to have such as a discussion, since the future is unknown. This should be of grave concern to us, even with directives to withhold treatment.
Limited as they are, directives to refrain from certain treatments contrast starkly with directives ordering MAiD, in that they indicate a wish to be left alone, not a wish to have something actively done to end one’s life. No jurisdiction in the world requires physicians to obey an advance directive mandating any specific medical intervention, much less the ending of life.
In the case of cognitive disorders, the directive denies the person the right to change their mind. It requires the physician to directly cause the death of someone who is not asking to die, as illustrated by the recent case in the Netherlands of a woman who was sedated, restrained and euthanized against her will in obedience to such a directive.[xxv] It binds the incapable person to a decision made at a moment in the past, despite the fact that he or she is still conscious and able to interact and enjoy life, and may have a very different outlook on life and different wishes from those expressed while still legally capable. Persons with dementia often rate their quality of life as better than their caregivers rate it.[xxvi] [xxvii] [xxviii] There is no reason not to respect the current wishes of an incapable person as long as they are not harmful to that person.[xxix]
In the Netherlands euthanasia is permitted by advance directive but remains very controversial and rarely done, primarily because of the difficulty in knowing the patient’s current wishes.[xxx] In 2017 a group of Dutch doctors spoke out against the practice: “Our moral reluctance to end the life of a defenseless human being is too big”, they wrote. Some physicians specialized in euthanasia were among the signatories. [xxxi]
The risk of elder abuse is ever-present.[xxxii] Even cognitively intact older persons are often dependent on the younger generation, emotionally as well as for help in maintaining their autonomy and navigating a world that has changed since their time. Early, unrecognized cognitive impairment increases the dependency and the power imbalance. Even well-intentioned families may give a subtle message that the older person’s care is burdensome to them. When the caregivers are abusive this power differential can lead to an undue influence to sign legal documents, such as a will or protection mandate in favour of the abuser.[xxxiii] [xxxiv] Private residential or home care for a dependent older person is expensive and can rapidly deplete the expected inheritance of the next generation. Advance directives authorizing death would provide a new and more definitive tool for greedy heirs.[xxxv]
The State has interests too. The degree to which home and residential care is funded depends on many political and budgetary factors unrelated to the needs of the people concerned. Indeed, one of the reasons for the disproportionate effect of the pandemic on seniors in residential care is the chronic underfunding that was present for years before it began.
Health professionals who care for people with dementia also experience distress, especially in situations of understaffing. If a patient has difficult behaviour, it becomes easy to blame the patient instead of reflecting on the nature of the illness and trying to understand the motivation behind the behaviour.
These interests would unavoidably be factors in decisions to implement advance requests for MAiD, whether by distressed families or health care providers who project their suffering onto the patient, or by health care administrators in need of beds.
The claim that the death by MAiD of persons with dementia can become an autonomous choice, through written consent to it before losing their decision-making capacity, is philosophically and ethically flawed.
Our recommendation on the question of MAiD by advance request for persons incapable of decision-making is simple: Reject it.
On stigma and solidarity
Despite the insistence on autonomy as the supreme value and the motivation of the campaign for MAiD, both in the case of mental illness and in that of dementia, it often comes down to looking at members of these marginalized groups with revulsion and thinking “I don’t want to be like that”.
Dignity, an inherent characteristic of every human being, is reduced to looking nice, functioning in society and being autonomous for personal care. A person who can’t work and who must be looked after becomes a second-class citizen, to be pitied and avoided.
“The intrinsic value of a toddler who is incontinent and needs help to eat, dress and wash, is never contested by his parents. This child is worthy of consideration and care, even if he has not yet acquired propriety. What about those who live their whole life with a mental or physical disability that limits their access to this type of dignity? Should these people be euthanized?”[xxxvi]
Seniors with neurocognitive disorders and people of all ages with mental illness are constantly confronted with ableist biases in the health care system. They are referred to with derogatory language, blamed for occupying space in emergency rooms and hospital wards, and often discharged prematurely, to their detriment and resulting in return visits to the hospital. The natural evolution of this discrimination against our patients is enthusiasm for MAID. Why would anyone want to be part of such a marginalized and neglected group? Kill me first!
But we never know when we will join those groups and yearn to be treated with respect. And ultimately we are all vulnerable, even those who are presently healthy and strong. This fact has been underlined by the COVID-19 pandemic, when we see young healthy people become critically ill and even die. Instead of rejecting our shared vulnerability, we must accept it as part of the human condition, unavoidable but beautiful, as it draws us to interdependence and connectedness instead of unrealizable radical autonomy.
We must build solidarity. We need adequate support from the State for mental health care. We need adequate publicly-funded home care and residential care for seniors. But we must also build a society in which families and friends of those who are ill reach out to them and support them.
This kind of solidarity exists. We physicians see it daily in the relatives and friends of our patients. We see it in many individuals working in health care settings who go beyond strict duty to care for patients. We see it in non-profit organizations created to provide companionship and all kinds of support to people who are alone and aging or sick. But of course more is always needed.
That is the solution to the distress we feel when we see people suffer. More death is not.
[i] https://collectifmedecins.org/en/declaration/signatories/
[ii] https://collectifmedecins.org/en/declaration/
[iii] https://cca-reports.ca/reports/medical-assistance-in-dying/
[iv] http://www.vps-npv.ca/stopc7
[v] https://disabilityfilibuster.ca/
[vi] https://nationalpost.com/news/canada/address-anti-indigenous-racism-in-health-care-before-expanding-maid-fn-advocate
[vii] https://cmha.ca/news/statement-on-medical-assistance-in-dying-maid
[viii] https://www.camh.ca/-/media/files/pdfs—public-policy-submissions/camh-just-committee-presentation-bill-c7-nov-2020-pdf.pdf
[ix] https://ampq.org/wp-content/uploads/2020/12/mpqdocreflexionammenfinal.pdf
[x] https://www.ledevoir.com/opinion/idees/595951/notre-inquietude-face-a-l-aide-medicale-a-mourir
[xi] http://maid2mad.ca/wp-content/uploads/2021/03/MAID-and-Niagara-Falls.pdf
[xii] https://suicideprevention.ca/Statement-on-MAID
[xiii] https://collectifmedecins.org/en/maid-for-mental-illness-myths-facts/
[xiv] http://legisquebec.gouv.qc.ca/en/showdoc/cs/S-32.0001
[xv] an Veen S, Ruissen A, Widdershoven G. Irremediable psychiatric suffering in the context of physician assisted death: a scoping review of arguments in the literature. Can J Psych. 2020;65(9):593-603. https://journals.sagepub.com/doi/10.1177/0706743720923072?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed
[xvi] Sinyor M and Scaffer A. The Lack of Adequate Scientific Evidence Regarding Physician-assisted Death for People with Psychiatric Disorders Is a Danger to Patients. Van J Psych 2020: 0, Vol. 65(9): 607-609. https://journals.sagepub.com/doi/full/10.1177/0706743720928658
[xvii] Ibid
[xviii] http://www.assnat.qc.ca/en/travaux-parlementaires/commissions/CSSFV/consultations/consultation-619-20210625.html
[xix] https://www.cmpa-acpm.ca/en/advice-publications/handbooks/consent-a-guide-for-canadian-physicians#assault
[xx] https://www.cmpa-acpm.ca/serve/docs/ela/goodpracticesguide/pages/communication/Informed_Consent/three_key_elements-e.html
[xxi] Ibid
[xxii] https://educaloi.qc.ca/en/capsules/advance-medical-directives/
[xxiii] Ibid
[xxiv] Ibid
[xxv] Miller DG, Dresser R and Kim SYH. Advance euthanasia directives: a controversial case and its ethical implications. J Med Ethics 2019; 45:84-89. https://pubmed.ncbi.nlm.nih.gov/29502099/
[xxvi] Zucchella C et al, Quality of life in Alzheimer disease: a comparison of patients’ and caregivers’ points of view. Alzheimer Dis Assoc Disord. 2015 Jan-Mar;29 (1):50-4
[xxvii] Dixit D et al, Quality of Life Assessments in Individuals With Young-Onset Dementia and Their Caregivers. Journal of Geriatric Psychiatry and Neurology. Published online July 9, 2020. https://journals.sagepub.com/doi/10.1177/0891988720933348
[xxviii] Dewitte L et al, Cognitive functioning and quality of life: Diverging views of older adults with Alzheimer and professional care staff. International journal of geriatric psychiatry. 33:8, August 2018. https://doi-org.proxy3.library.mcgill.ca/10.1002/gps.4895
[xxix] http://www.alzheimer.ca/en/Living-with-dementia/Caring-for-someone/Making-decisions
[xxx] Pols, H., Oak, S., 2013. Physician-assisted dying and psychiatry: Recent developments in the Netherlands. International Journal of Law and Psychiatry. 36:506-514.
[xxxi] https://nltimes.nl/2017/02/10/dutch-doctors-euthanasia-advanced-dementia-patients
[xxxii] https://cnpea.ca/images/canada-report-june-7-2016-pre-study-lynnmcdonald.pdf
[xxxiii] https://assetsforcare.seniorsrights.org.au/relationship-breaks-down/equity/undue-influence-unconscionable-dealing/
[xxxiv] http://www.donnellgroup.ca/resources/estate-litigation-articles/undue-influence-canada
[xxxv] https://www.mercatornet.com/careful/view/elder-abuse-a-real-and-present-danger/20318
[xxxvi] Pageau, Félix, La responsabilité de protéger les personnes âgées atteintes de démence. Manifeste. (Québec: Les Presses de l’Université Laval, 2020). https://www.pulaval.com/produit/la-responsabilite-de-proteger-les-personnes-agees-atteintes-de-demence-manifeste