At the beginning of October, the Physicians’ Alliance against Euthanasia made a submission to the CCA Expert Panel on Medical Assistance in Dying. The panel was convened at the request of the Canadian Minister of Health at the time, Jane Philpott, and the Canadian Minister of Justice, Jody Wilson-Raybould, to examine the possibility of expanding euthanasia access to three situations: requests by “mature minors”, advance requests, and requests where mental illness is the sole underlying medical condition. For more information, please see the official website >>
Below is our position statement to the panel:
Position Statement on medical assistance in dying requests by “mature minors”, advance requests, and requests where mental illness is the sole underlying medical condition
October 6, 2017
The Physicians’ Alliance against Euthanasia has been a major participant in the debate around what is now called “medical assistance in dying” (MAID) since 2012, and many of our individual members long before that. The Alliance has a membership of 1123 physicians,[i] all of whom 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 Panel is not to reopen the debate that took place before Bill C-14 was adopted, but rather to consider the advisability of extending MAID to new groups of Canadians.
It must be acknowledged by all those taking part in the present discussion that 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, though minimized, 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. The recent change in the leadership of the Working Group on Advance Requests indicates to us that one “bias” is seen as acceptable by decision-makers while the other is not.
This situation should be kept in mind by all committee members throughout their study of evidence for or against the three extensions of the law now being contemplated. The evidence chosen will reflect the position of the parties presenting it. In fact hard evidence is very scarce, since we are essentially in uncharted territory: MAID for the situations now being considered is legal only in a few countries and the numbers are small. There may not be powerful evidence of harm from laws permitting MAID in vulnerable populations such as those we are contemplating, but this cannot be taken as proof there is no harm. Moreover, it is essentially impossible to demonstrate a lack of coercion or harm to individual patients.
Some have attempted to demonstrate that “vulnerable groups” are not over-represented among people who die by euthanasia or assisted suicide,[iii] but the socioeconomic categories used, such as women, racial minorities and people of low educational or economic status, are of little relevance in this context.[iv] The physician members of our Alliance have a collective clinical experience of many years of caring for patients of all ages and social conditions. Our experience may not be quantifiable but is nonetheless very important. We have seen the ambivalence of death wishes; we have seen them evaporate with adequate treatment and social support; we have seen the relief when a suicide attempt fails.[v] We have seen patients who fear burdening their families but might never say so. We have seen abused elders protecting their abuser, who may also be their only source of support. A brief patient case history by the Canadian palliative care pioneer Dr. Balfour Mount, of a successful professional man who had terminal cancer, [vi] illustrates the fact that vulnerability can be found in the most surprising places.
In the very tendentious debate that took place before the adoption of the law, arguments in favour of euthanasia used dramatic stories of extreme suffering, leading the public and many politicians to believe that MAID would only be applied in similar cases. Subsequent events have indicated the contrary, with people being euthanized for painful arthritis,[vii] treatable psychiatric illness [viii] and fear of losing autonomy.[ix] The rhetoric has shifted from euthanasia as a rare exception to promotion of death as a solution for suffering of all kinds. The “reasonably foreseeable death” criterion is already being flaunted,[x] and two cases presently before the courts may lead to its removal from the law.[xi] [xii]
We urge all members of the CCA Expert Panel on Medical Assistance in Dying to remain fully aware that, in every group of persons for whom MAID is permitted, there will be errors, emotional appeals and manipulation of information, leading to the death of people who would not have chosen it in a different social and political context, including some who did not in fact choose it. We urge you to consider not only how such extensions can be made “safely”, but firstly whether they should be made at all. Complete safety is impossible, as we have learned in the past year. We believe that the unjust death of even one Canadian is too great a price to pay for the so-called liberty of choosing to die at a difficult moment.
The three extensions being contemplated all raise serious concerns regarding consent. Adolescents’ capacity to consent is not yet fully developed, that of suicidal mentally ill persons is altered by disease, and for patients who have lost capacity, prior consent before their illness is insufficient. For such a grave decision as death we must hold ourselves to a high standard in order to protect every Canadian from premature death.
Requests by “mature minors”
Arguments in favour of extending current legislation on MAID to “mature minors” are based on a perceived unfairness in permitting the “benefit” of a premature death to those over 18 years of age, while denying it to younger persons. Ages of majority vary and cannot be supposed to reflect the most recent findings of neuroscience regarding brain development. It is still 21 years in some U.S. states, and the drinking age is 21 across the U.S. Nor can the early death of a young person, especially if the apparently free and informed decision is driven by immature neurodevelopment, be considered a benefit in any way.
The concept of “mature minor” is a legal construct, not a medical concept, and has come under considerable criticism in the literature.[xiii] [xiv] Recent medical and neuropsychological findings indicate, on the contrary, that a young person’s judgment is not mature until well into adulthood, leading to considerable controversy in this area. Indeed, in criminal law, the trend seems to have reversed, tending toward decreased criminal responsibility of adolescent offenders, based on the immaturity of their still-developing brain.[xv]
For consent to health care, according to the Canadian Medical Protective Association (CMPA), “The legal age of majority has become largely irrelevant…”[xvi], and a child’s maturity and capacity to consent take precedence. With regards to licensure for driving, however, the tendency now is toward increased caution with young drivers, lengthening the process of obtaining a license and restricting the circumstances in which the teenager is permitted to drive.[xvii]
A decision to choose death is distinct from all the above decisions, and there is little or no data on which to rely. It is unique in that there is no going back, and different in kind even from a decision to withdraw or withhold medical treatment.
It is now well known that adolescents do not have fully developed brains until the mid-twenties. According to Cherry (2013),[xviii] “the empirical outcomes data as well as the anatomical and physiological data support the conclusion that there is no clear correlation between an adolescent’s intellectual ability to assess risk and that adolescent’s effective executive capacity to make mature judgments in matters that involve risk.” Thus, an adolescent might be able to explain perfectly the risks and benefits associated with the decision being considered, but still be unable to judge adequately how to apply this theoretical knowledge. This flies in the face of the recommendation of the CMPA and other authorities, that the ability of a child to “teach back” the relevant information is sufficient to determine his or her capacity to make a decision.
A 2016 report of the American Academy of Pediatrics states: “Newer insight into brain structure and function now makes the determination of which minors possess the maturity for decision-making much less clear-cut… Although the size of the brain nearly reaches its adult size in early childhood, we know… that much of the brain has continued dynamic changes in gray matter volume and myelination into the third decade of life. The prefrontal cortex, where many executive functions are coordinated, including the balancing of risks and rewards, is among the last areas of the brain to mature, with these functions continuing to develop and mature into young adulthood.
Neuropsychological research to link adolescent behaviors such as sensation seeking and risk taking to brain structure and function is ongoing… One theory is that adolescents have a dual-systems model of decision-making. A “socioemotional” system located in the limbic and paralimbic brain regions is believed to develop around puberty, with increased dopaminergic activity, and manifests as reward-seeking behavior. The “cognitive control” system, which promotes self-regulation and impulse control, is in the prefrontal cortices and gradually develops into the third decade of life. This temporal imbalance or gap between the 2 systems can lead to the risky behavior seen in adolescence and has been analogized to starting a car engine without the benefit of a skilled driver.” [xix]
An example from the practice of one of us (RH) is a 16 year old adolescent named Myriam (not her real name) who came to the office depressed because she had failed an examination and her boyfriend had recently broken off their relationship. Myriam could only see blackness all around her. She lost interest in her other friends and in activities which formerly gave her pleasure. She no longer wished to go to school. Clearly she was depressed. Some months later, after psychotherapy and medication, Myriam was full of life and enthusiasm.
Far from favouring the opening of access to “medical aid in dying” to adolescents, we propose greater scrutiny of such choices made by young adults, up to the age of at least 21 and perhaps 25. Any limit on the “choice” of these individuals is well compensated for by decreasing the risk of the untimely and ill-chosen death of a young person, which is a tragedy for all concerned.
Requests where mental illness is the sole underlying condition
Suicide is a critical public health issue in Canada. It is currently the 9th most frequent cause of death, and rates are increasing.[xx] The website of the Canadian Association for Suicide Prevention refers to suicide as “a permanent solution to a temporary problem”,[xxi] and advises that “If you are unable to think of solutions other than suicide, it is not that solutions don’t exist, only that you are currently unable to see them.”[xxii] The proposal to permit MAID for suffering due to mental illness strikes at the heart of suicide prevention strategies, both in community settings and in psychiatric practice. For this and other reasons the American Psychiatric Association published in December 2016 a position statement that “a psychiatrist should not prescribe or administer any intervention to a non-terminally ill person for the purpose of causing death.”[xxiii]
Whether or not one believes that suicide can at times be a rational act rather than a symptom of mental illness, in the presence of such illness it may be virtually impossible to make the distinction. The role of the physician is to protect the suicidal patient, by removing the lethal means,[xxiv] or when necessary, by confining the patient in hospital against his or her will. Similarly, a community worker in suicide prevention must convince the person not to take action and to seek psychiatric help.
Legal MAID for persons with psychiatric illness would make this work impossible. We have already seen the dilemma played out in Québec: in the first months after the euthanasia law was adopted, the Collège des médecins du Québec saw the need to publish guidelines [xxv] on the approach to patients brought to hospital after a drug overdose, as some doctors were refraining from treating them, considering the suicidal act to be an expression of treatment refusal.
A suicidal patient is often reluctant to engage in therapy, tending to migrate toward the preferred option of death. Therefore, to tell a patient that one is willing to consider a MAID request, should a therapeutic intervention fail, would undermine the therapeutic process from the beginning.[xxvi] Similarly, the simple fact of MAID being legal could have the same effect, as the patient would know he or she could seek it elsewhere if the specific doctor were unwilling to provide it. The role of transference and counter-transference in every clinician–patient encounter and “the risk that the psychiatrist may identify too much with the patient and his or her situation (which may be connected to the doctor’s own fears of loneliness, dependence, illness, and handicap)…” [xxvii] has not been sufficiently considered.
Access to mental health services is another important consideration. In Canada waiting times can be from several months to a year,[xxviii] and patients suffering from complex disorders may not, even then, see a psychiatrist who has the expertise necessary to offer effective treatment. Diagnostic inaccuracies can make it appear that a patient’s suffering is irremediable when there are therapeutic options that have not been tried.
The fact that suicide is not illegal does not imply a duty to provide the means to commit suicide. The medical profession, and psychiatrists in particular, must reject MAID for their patients, as it will undermine the care of their most vulnerable patients by its contradictory message and by removing the tools needed to treat their illness.
Advance requests
The proposal to permit MAID by advance request for persons incapable of decision-making is a response, not to present suffering, but to fear of hypothetical future suffering. Our major concerns regarding this possibility include the questionable validity of written advance directives as a decision-making tool, the lack of concurrent consent at the time of death, and the very real danger of elder abuse.
Despite the early popularity of advance written directives for medical decisions in the event of future loss of decision-making capacity, it is not clear that they are a useful tool when used alone. Most research on their efficacy has focused on intermediate outcomes such as completion of an advance directive or occurrence of end-of-life discussions, rather than on the concordance between preferences for care and delivered care.[xxix] Concerns about the applicability of written directives include difficulty envisaging future events while well, and the impossibility of foreseeing all possible medical scenarios. Many have concluded that such documents “promise more control over future care than is possible”.[xxx] Widely-used education tools now tend to emphasize reflection and discussion over completion of a written document. [xxxi]
The notion of choosing, when one is well, to have one’s life terminated upon reaching a certain degree of loss of autonomy or incapacity has become popular but is fraught with ethical concerns. Such a directive is different not in degree, but in kind, from one that authorizes limiting life support in the event of critical or terminal illness, which is simply a choice to allow the illness to run its natural course.
In the case of cognitive disorders, the directive denies the person the right to change his or her 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.[xxxii] 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.[xxxiii] There is no reason not to respect the wishes of an incapable person as long as they are not harmful to that person.[xxxiv]
In the Netherlands euthanasia is permitted by advance directive but remains very controversial and rarely done, primarily because of the impossibility of knowing the patient’s current wishes.[xxxv] 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. [xxxvi]
Dutch academic Boris Brummans wrote in his 2007 article Death by Document [xxxvii] of his father’s euthanasia death through an advance directive: “Although the euthanasia was meant to liberate my dad from the conventional constraints of suicide, its textual, declarative form turned him into a prisoner of himself… By signing the euthanasia declaration… my father created a persona of, and for, himself that transcended space and time, based on the person he thought he would be. On what were these thoughts based? Hollow images of a self not yet lived; meager ideas about a life not yet fleshed out.”
There are further concerns if the directive is written at the time of diagnosis. A diagnosis of dementia – as of any other serious illness – is a major life crisis. Those of us who have been through even lesser crises know that our judgment is not at its best when flooded with overwhelming emotions, fears and questions. Most would be sensible enough to defer life-changing decisions until we are calm enough to think clearly. But for the person diagnosed with dementia the clock is ticking and the advance directive must be signed before decision-making capacity is lost.
Finally, the risk of elder abuse is ever-present.[xxxviii] 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 (durable power of attorney) in favour of the abuser.[xxxix] [xl] One of us (CF) has extensive clinical experience with such situations and has often testified at court hearings in favour of patients, including the woman whose story was told in a 2016 Montreal Gazette article.[xli] 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.[xlii]
Conclusion:
Canada is one of only a handful of countries where actively ending the life of a sick person is permitted by law. The World Medical Association [xliii] and the near-totality of national medical associations oppose euthanasia. For our country to have taken this step despite full awareness of Canadians’ inadequate access to palliative care and pain medicine was ill-advised to say the least. To extend hastened death to people who are not imminently dying, and who may not be fully able to consent to it, while mental health care is inaccessible and elder abuse is rampant, would be the summit of heedlessness and disregard for the well-being of our citizens. We make our own the position expressed in September 2017 by the American College of Physicians: “The ACP does not support the legalization of physician-assisted suicide, the practice of which raises ethical, clinical, and other concerns. The ACP and its members, including those who might lawfully participate in the practice, should ensure that all patients can rely on high-quality care through to the end of life, with prevention or relief of suffering insofar as possible, a commitment to human dignity and management of pain and other symptoms, and support for families. Physicians and patients must continue to search together for answers to the challenges posed by living with serious illness before death.” [xliv]
Catherine Ferrier, MD, CCFP (COE), FCFP
Division of Geriatric Medicine, McGill University Health Centre
Assistant Professor of Family Medicine, McGill University
Richard Haber, MD, FRCPSC
Pediatrician, McGill University Health Centre
Associate Professor of Pediatrics, McGill University
Nicholas Newman, MD, FRCPSC
Orthopedic surgeon, Centre hospitalier de l’Université de Montréal
Professeur agrégé de clinique, Département de chirurgie, Université de Montréal
François Primeau, MD, FRCP
Founder, Geriatric Psychiatry, Royal College of Physicians and Surgeons of Canada
Fellow, Canadian Psychiatric Association
Professeur titulaire de clinique, Département de psychiatrie et neurosciences, Université Laval
For the Physicians’ Alliance against Euthanasia
https://collectifmedecins.org/en/
[i] https://collectifmedecins.org/en/declaration/signatories/
[ii] https://collectifmedecins.org/en/declaration/
[iii] Battin MP, van der Heide A, Ganzini L, et al. Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in “vulnerable” groups. Journal of Medical Ethics 2007;33: 591-597.
[iv] Finlay IG, George R. Legal physician-assisted suicide in Oregon and The Netherlands: evidence concerning the impact on patients in vulnerable groups—another perspective on Oregon’s data. Journal of Medical Ethics 2011;37:171-174
[v] https://www.newyorker.com/magazine/2003/10/13/jumpers
[vi] https://www.youtube.com/watch?v=GbMhvPT2EfM (see 7:00 to 13:50 minutes)
[vii] https://www.thestar.com/news/gta/2017/06/19/advocates-hail-judges-decision-in-womans-assisted-death-appeal.html
[viii] http://www.ctvnews.ca/health/albertan-with-same-mental-illness-as-adam-maier-clayton-had-doctor-assisted-death-1.3380938
[ix] http://nationalpost.com/news/canada/the-right-to-die-on-ones-own-terms-at-94-sick-tired-and-living-alone-dad-got-the-death-he-wanted
[x] https://www.thestar.com/news/gta/2017/06/19/advocates-hail-judges-decision-in-womans-assisted-death-appeal.html
[xi] https://beta.theglobeandmail.com/news/politics/rights-group-launches-legal-challenge-of-assisted-dying-law/article30623211/?ref=http://www.theglobeandmail.com&
[xii] http://www.cbc.ca/news/canada/montreal/assisted-dying-quebec-canada-legal-challenged-1.4160016
[xiii]Partridge B. The mature minor: some critical psychological reflections on the empirical bases. J Med Philos. 2013 Jun; 38(3): 283-99
[xiv] Cherry MJ, Ignoring the data and endangering children: why the mature minor standard for medical decision making must be abandoned. J Med Philos. 2013 Jun; 38(3): 315-31
[xv] Bonnie RJ and Scott ES, The teenage brain: adolescent brain research and the law. Current directions in psychological science, Volume 22, issue 2, pages 158-161.
[xvi] https://www.cmpa-acpm.ca/en/advice-publications/browse-articles/2014/can-a-child-provide-consent
[xvii] Bonnie RJ and Scott ES, op. cit.
[xviii] Cherry MJ, op. cit.
[xix] American Academy of Pediatrics, Technical report: Informed Consent in Decision-Making in Pediatric Practice. 2016: http://pediatrics.aappublications.org/content/early/2016/07/21/peds.2016-1485
[xx] https://suicideprevention.ca/understanding/suicide-in-canada/
[xxi] https://suicideprevention.ca/need-help/
[xxii] Ibid
[xxiii] https://www.psychiatry.org/home/policy-finder
[xxiv] Zalsman G et al, Suicide prevention strategies revisited: 10-year systematic review. Lancet Psychiatry 2016; 3: 646–59.
[xxv] http://www.cmq.org/publications-pdf/p-1-2016-03-08-fr-geste-suicidaire-expression-refus-de-traitement.pdf?t=1506903527294
[xxvi] Pols, H., Oak, S., 2013. Physician-assisted dying and psychiatry: Recent developments in the Netherlands. International Journal of Law and Psychiatry. 36:506-514.
[xxvii] Berghmans, R. et al. Physician –Assisted Suicide in Psychiatry and Loss of Hope. International Journal of Law and Psychiatry. 2013. 36:436-443
[xxix]Houben et al. Efficacy of Advance Care Planning: A Systematic Review and Meta-Analysis. JAMDA 15 (2014) 477e489.
[xxx] Perkins, Henry S. Controlling Death: The False Promise of Advance Directives. Annals of Internal Medicine, July 3, 2007.
[xxxi] http://www.advancecareplanning.ca/
[xxxii] http://www.independent.co.uk/news/world/europe/doctor-netherlands-lethal-injection-dementia-euthanasia-a7564061.html
[xxxiii] 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
[xxxiv] http://www.alzheimer.ca/en/Living-with-dementia/Caring-for-someone/Making-decisions
[xxxv] Pols, H., Oak, S, op. cit.
[xxxvi] https://nltimes.nl/2017/02/10/dutch-doctors-euthanasia-advanced-dementia-patients
[xxxvii] Brummans, Boris H. J. M. Death by Document: Tracing the Agency of a Text. Qualitative Inquiry 2007 13: 711.
[xxxviii] https://cnpea.ca/images/canada-report-june-7-2016-pre-study-lynnmcdonald.pdf
[xxxix] https://assetsforcare.seniorsrights.org.au/relationship-breaks-down/equity/undue-influence-unconscionable-dealing/
[xl] http://www.donnellgroup.ca/resources/estate-litigation-articles/undue-influence-canada
[xli] http://montrealgazette.com/news/veronika-piela
[xlii] https://www.mercatornet.com/careful/view/elder-abuse-a-real-and-present-danger/20318
[xliii] https://www.wma.net/policies-post/wma-declaration-on-euthanasia/
[xliv] http://annals.org/aim/article/2654458/ethics-legalization-physician-assisted-suicide-american-college-physicians-position-paper