As I write this on October 10, 2020 World Mental Health Day is upon us once again. The global picture of the suffering that mental health problems visit upon humanity remains as grim today as it does in every other year. Neuropsychiatric disorders remain stubbornly the third leading global cause of disability-adjusted life-years. Reliable access to mental health care, when it is needed, remains a significant problem even in the global north, but those problems pale into insignificance when compared against the situation in much of the global south. According to WHO data about 75% of people with mental health problems in the global south receive no treatment for their illness.1 The disruption of health services, courtesy of the global response to COVID-19, has resulted in already unreliable and insufficient access to health care under ‘normal’ circumstances turning into no access for many. That has impacted patients seeking relief from mental illness-related suffering disproportionately. The disregard for the suffering mental illness causes in the global south is also reflected in global health aid allocations to this problem. As far as global health aid is concerned, only about 1% of international development assistance for health is earmarked for mental health. Considering the much higher contribution to disability-adjusted life years impact that mental illnesses make, this does raise questions of distributive resource allocation justice.
Thursday, August 19, 2021
It was just a matter of time after the successful creation of pig and cow embryos grown with human cells that some researcher somewhere would think it might be worth trying to find out whether it is possible to grow more closely related monkey embryos with human cells, and so they did.1 The experiment reportedly has not been a straightforward runaway success, but, of 132 monkey embryos injected with human extended pluripotent stem cells, three embryos were still alive at day 19. The low success rate may be a consequence of the fact that the researchers, led by a stem cell biologist at the Salk Institute, have not quite figured out yet how to manipulate which cells grow into which kind of tissue.
Disability, mental illness, and medical assistance in dying in Canada: Recent slippery slope and social determinants of health arguments miss the mark
By Jocelyn Downie and Udo Schuklenk
In its 2015 landmark Carter decision, Canada’s Supreme Court ruled that the blanket criminalisation of medical assistance in dying (MAiD) unjustifiably infringes on Canadians’ rights and declared that the prohibitions were:
“of no force or effect to the extent that they prohibit physician-assisted death for a competent adult person who (1) clearly consents to the termination of life and (2) has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.”
The ruling’s eligibility criteria meant that someone who requested MAiD did not have to be suffering from a terminal illness. For instance, some patients suffering non-lethal intractable mental illnesses or disabilities could be eligible to request and receive MAiD.
Canada’s Parliament responded 16 months later with legislation (Bill C-14) defining persons with a grievous and irremediable medical condition thus:
“(a) they have a serious and incurable illness, disease or disability; (b) they are in an advanced state of irreversible decline in capability; (c) that illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable; and (d) their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining.”
With this narrow definition, the country’s political leaders demonstrated an unwillingness to fully reflect the Supreme Court’s boundaries of permissibility in the regulatory regime they sought to introduce, despite warnings during parliamentary hearings by constitutional law experts that the Bill was inconsistent with both the judgment and the Canadian Constitution. The Canadian Senate unsuccessfully tried to amend the Bill to remove the unconstitutional provisions. Predictably, within days of the Bill passing it was challenged in court in British Columbia and Quebec. The Quebec trial court agreed with the plaintiffs, declaring that the “reasonably foreseeable” eligibility criterion violated their constitutional rights, including that it unjustifiably discriminated against persons with disabilities (and others whose natural death was not reasonably foreseeable) by preventing them from accessing MAiD.
The Canadian government chose not to appeal this decision (publicly acknowledging that it was sound and that they would lose on appeal) and proposed Bill C-7 to bring its legislation in line with constitutional requirements. The Bill removed “natural death has become reasonably foreseeable” as an eligibility criterion for MAiD, so persons with disabilities as their sole underlying medical condition could access MAiD. However, persons with a mental illness as their sole underlying medical condition could not because the government added an exclusion criterion – for the purposes of the “serious and incurable illness, disease or disability” provision in the legislation, mental illness is not considered an “illness, disease or disability.” However, Parliament added a sunset clause to this exclusion so in March 2023 there will automatically no longer be a blanket exclusion of people with mental disorders as their sole underlying condition.
As Bill C-7 was being considered by Parliament, there was a heated debate about the inclusion of people with disabilities and mental illnesses as their sole underlying conditions. Commentators invoked slippery slope arguments and arguments grounded in concerns about the role of social determinants of health in MAiD requests. These deserve a response.
Some argued that making MAiD available to people with mental illnesses or disabilities as their sole underlying condition was evidence of a slippery slope, as predicted by opponents of MAiD when the initial legislation came into effect. They argued that because the change from C-14 to C-7 moved Canada in a more permissive direction, it was evidence of an – in their view – unwanted slide down a slippery slope.
However, slippery slope claims vis-à-vis today’s law take a narrowly composed snapshot that fails to capture the entire scene. Yes, the change from C-14 to C-7 moved Canada in a more permissive direction. However, that ignores where Canada was before C-14. The change from the Supreme Court 2015 criteria to 2016’s C-14 moved Canada in a restrictive direction. Canada did not become more permissive between Carter and Bill C-7. Rather, Canada unconstitutionally restricted the eligibility criteria for a few years, but today the country is back where the Supreme Court of Canada put it in its decision.
Social determinants of health
Some disability rights activists opposed to the proposed reforms to Canada’s legislation argued that it is never the disability or the mental illness that renders a person’s life not worth living to the person, but rather it is the person’s social determinants of health. On this view, people with disabilities or mental illness as their sole underlying medical conditions seek MAiD because their suffering is caused, not by their condition, but rather by the absence of reliable support services when they are needed or poverty, homelessness, and other social determinants of health. These activists argue, persons with disabilities or mental illnesses as their sole underlying condition should be ineligible for MAiD until the disparities in the social determinants of health are fully remedied.
These arguments disrespect the lived experience of some people with disabilities or severe mental illness who report that their suffering is caused by their condition and not by social determinants of health. These arguments also fail to recognize that: some people with disabilities or severe mental illness seeking MAiD are privileged and not lacking with respect to the social determinants of health; and some people with disabilities or severe mental illness have good access to all possible treatments. A collective’s vulnerability tied to the social determinants of health cannot be used to justify overriding an individual’s right to choose.
Even if one accepts (as we do) that supports and services for persons with mental illnesses and disabilities should be dramatically improved, it still does not follow that a patient who is unwilling to tolerate their situation any longer should be stripped of their agency to request MAiD. Removing such patients’ agency to make such decisions condemns such patients to potentially very long periods of excruciating suffering, in an attempt to improve a particular health care system – reducing these patients to a mere means used to achieve another, worthy, objective. The decision to partake in such activism should be a person’s voluntary and deliberate choice. It should not be a result of holding decisionally-capable people hostage to the project of reform.
Furthermore, many people with disabilities support access to MAiD for persons with disabilities. The available polling demonstrates that. And it should not be ignored that the lead counsel in Carter, the sponsor of Bill C-7, and the plaintiffs in the Quebec case were all persons with disabilities – vehemently arguing that denying this group access to MAiD is stigmatizing, strongly paternalistic, and unjustly discriminatory.
Canada clearly has a permissive MAiD regime. Its legislation embodies a regime that respects the rights of each individual autonomous person with a mental illness or disability causing them enduring and intolerable suffering to choose to end that suffering through MAiD.
Authors: Jocelyn Downie and Udo Schuklenk
JD: School of Law, Dalhousie; University Schulich School of Law, Halifax, Nova Scotia, Canada
US: Department of Philosophy, Queen’s University, Kingston K7L 3N6, Ontario, Canada udo. schuklenk@ pm. me
Competing interests: None declared.
Social media accounts of post authors:
Jocelyn Downie twitter @jgdownie
Udo Schuklenk twitter @schuklenk
Monday, March 16, 2020
What makes this less straightforward in practice than it looks like is that what 'the odds' are will inevitably change over time, as health care professionals begin gathering information about what does and doesn't work. This is something we saw during the Ebola virus outbreak of 2014/15. Death rates were staggeringly high and went down considerably as a result of the experience and knowledge gained by the attending health care workers. A case in point, the limited currently available evidence suggests that the vast majority of people who get on ventilators die anyway (the two papers that I have seen peg the mortality rate between 86%-97%), so the current debate about lack of ventilators might be a lot of noise about nothing. I wouldn't be surprised, however, if that changed over time, so this is something that makes allocation decisions more difficult, as the decision-making needs to be continuously updated, based on the rapidly accumulating evidence. Now, while this may well lead to different practical decisions, the normative criteria used to evaluate that evidence should remain pretty stable.
The really important bit though is that hospitals, by now, should have transparent resource allocation decision frameworks in place. They should have communicated those to their staff and made clear that to them that those criteria are binding on everyone. They should also communicate those criteria to the public. Nothing breeds suspicion, conspiracy theories and panic better than non-transparent decision-making procedures in a time of crisis. People need to understand that there is not one rule for them and another one for others who are better connected, as it were. We are all in the same boat, really.
Which takes me to my last point. This all strikes me as obvious. So I went (16 March 2020) to the COVID19 bits of the website of our local Kingston Health Science Centre (the new name for KGH/Hotel Dieu), to find out what their policies look like, and, to my surprise, there is no relevant information. There's invariably important information about restrictions, like how many visitors will be admitted, and it's all eminently sensible. However, the hospital communicates nothing about what will substantively drive its triage nurses' and clinicians' decision-making should the predicted wave of COVID19 hit the hospital, and you're unfortunate enough to end up there, as a patient. That is unacceptable. Patients and their loved ones have a right to know how life-and-death triage decisions will be made at the hospital where they or their loved ones will be admitted. Incidentally, if everyone knows the basis on which decisions will be made, patient expectations would be realistic from the outset, which can only help in such circumstances.
Thursday, October 31, 2019
Sarah Franklin, the Commentary's author, apparently undertakes in her actual job research on reproductive sociology, as opposed to bioethics.Her Commentary describes aptly the rise of Bioethics as a consequence of funding generously offered to ELSI academics during the heydays of the Human Genome Project. Her take on bioethics is that we should do away with ethics in the context of biomedicine and replace it with freewheeling societal engagement, no doubt facilitated and led by sociologists like herself. She generally thinks that Bioethics began to wither once the HGP funding fell by the wayside. Franklin also thinks that
Friday, October 04, 2019
Undertaking ethical psychiatric research in the global south’s prayer camps – is that even possible?
[This man lived in a Prayer Camp – he is drinking from a dirty container which staff put water in for him to drink. He slept, ate, and defecated beside the tree where he was chained ((c) 2012 Nick Loomis/Human Rights Watch]
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