Access to mental health care – a profound ethical problem in the global south

From Developing World Bioethics

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.

Human Rights Watch recently released a landmark report that shines a light on how countries in the global south respond to patients with mental illness related needs. They often put them in chains or shackle them in confined spaces. The human rights group quotes ‘Paul’, a patient who has been chained in a ‘faith healing’ institution in Kenya: ‘I’ve been chained for five years. The chain is so heavy. It doesn’t feel right; it makes me sad. I stay in a small room with seven men. I’m not allowed to wear clothes, only underwear. I have to go to the toilet in a bucket. I eat porridge in the morning and if I’m lucky, I find bread at night, but not every night…. It’s not how a human being is supposed to be. A human being should be free.’2 – Whatever ‘Paul’s' mental health issues may be, he is right. If he is a service user who does require permanent care, this surely isn’t the type of care that he is owed. Unsurprisingly, one explanation for the abuse that ‘Paul’ is subjected to has to do with the fact that ‘in many countries around the world, there is a widespread belief that mental health conditions are the result of possession by evil spirits or the devil, having sinned, displaying immoral behaviour, or having a lack of faith. Therefore, people first consult faith or traditional healers and often only seek medical advice as a last resort.’3

I reported in an Editorial in this journal last year about questionable research in such ‘faith healing’ institutions.4 The research was undertaken with the best of intentions,it aimed to reduce the number of people with mental health issues living in chains in such ‘healing’ outfits. The researchers tried to show that other methods, involving actual professional care, are superior to mere praying while-in-chains. While they were able to show that, apparently little has changed since then. Human Rights Watch reports that shackling occurs today in at least 60 countries across Asia, Africa, Europe, the Middle East, and the Americas.

I would urge bioethics researchers to focus at least some of their valuable attention on the plight of the global south’s mentally ill people and their need to access professional health care. It’s unlikely to capture as much public attention as the much-discussed question of how to allocate a prospective COVID-19 vaccine, but it’s arguably of greater importance.

From the chimera research frontiers: Ethics of monkey–human embryos

From Bioethics

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.

The primary objective of such research is not to develop more human-like monkeys, or more monkey-like humans, but to create new pathways towards making new organs for transplant purposes. This does raise interesting ethical questions. First among them is the question of what the moral status of such chimeras would be, should they ever be birthed. Then there are other issues, such as whether such research is itself ethically defensible, seeing that its primary objective is to—essentially—create a new source of organs for humans. Would it be ethically acceptable to create highly developed monkey–human chimeras only to kill them in order to extract organs for xenotransplantation purposes? Arguably the shortage of organs for transplant purposes can be addressed by changing how we go about sourcing them. Options available to us range from paying prospective donors for their organs to making it more difficult for those opposed to the use of their organs after their demise to opt out. Creating a new class of highly developed chimeras for xenotransplantation purposes does not appear to be necessary to achieve what is otherwise an uncontroversially desirable objective.

What about the uncertainty about moral status mentioned earlier? Let us assume that at least one of the remaining embryos could be successfully implanted (something not planned by this research team) and carried to term. What would be the moral status of the newborn chimera, seeing that it is a hybrid made up of both monkey and human cells? Those of us not hung up on species membership will focus on the capabilities of the newborn and base our answer to the moral status question on those capabilities. Is there sentience? Then inflicting pain and suffering on it matters morally. If, as was the case when human glia cells were injected into mice brains, mental capacities turned out to increase as a result of the monkey–human stem cell mix,2 then the moral status of the chimeras should rise. What matters for the determination of your moral status should be your capabilities, not how those capabilities came about. If anything, such a finding should give us further cause to reconsider using such chimeras as a convenient solution to our organ-shortage problem.

Julian Savulescu and Julian Koplin have considered a different solution. They propose a two-step solution: ‘Firstly, the cells which cause human brain development should be knocked out through gene editing, if possible. And secondly, the live-born chimeras should not immediately be “used”, instead, they are allowed to develop in social groups and are studied for their cognitive capacities and potential for non-verbal communication’.3 This strategy would permit us to study the chimeras carefully, and make a considered determination of what their moral status is, and of what is and what is not morally owed to them.

Of course, those opposed to the use of non-human primates for research purposes will likely be opposed to their use as living human organ banks, too, whether they are primate–human chimeras or ‘just’ primates. We do not need to rehearse those ethical arguments here, as readers of the journal will be very familiar with them.4 Berna Sozen, a stem cell biologist at Yale University, is quoted as saying that ‘it is really hard to say that it will ever be possible to grow organs for transplantation by creating these animal–human chimeras, but this research should continue for us to understand whether we will ever achieve this’.5 My view would be that it serves no apparent purpose to find out, if one is not also prepared to use such chimeras as mere means-type vessels carrying organs for transplant purposes. That seems difficult to justify.

Disability, mental illness, and medical assistance in dying in Canada: Recent slippery slope and social determinants of health arguments miss the mark

Cross posted from JME blog. 

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.

Slippery slopes

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.

Looking forward

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.

Paper title: Social determinants of health and slippery slopes in assisted dying debates: lessons from Canada

Authors: Jocelyn Downie and Udo Schuklenk

Affiliations:

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

On the role of academic journals during infectious disease outbreaks

Academic researchers, naturally, are keen to contribute productively to the biomedical as well as social challenges caused by the current outbreak of SARS-CoV-2. Some of us do this by talking to the overwhelmed editors of newsoutlets' opinion pages, who are currently drowning in COVID19 pitches. Others are sufficiently well-known to government bureaucracies that they receive invitations to contribute their competence in the development of any number of policies and guidance documents.

Most of us, though, given that we cannot quite escape COVID19 at the moment anyway, have begun producing COVID19 research outputs. Journal editors across disciplines face an unprecedented onslaught of article submissions, many of which written very recently, and typically they consist of results of biomedical or survey research, economic modelling, analyses of the experiences made in countries like China and Italy. In my own field people are concerned about normative aspects of triage policies, privacy aspects of prevention strategies, challenge trials, equity, and so on and so forth.

What many of these article submissions have in common is that the authors hope to contribute to working through the current outbreak. I wonder whether academic journals, and the peer review and production processes we currently have in place for them, make them suitable outlets for those sorts of activities.

Most global publishers have developed technological means that permit the digital, on-line first publication of accepted content. These publications precede print publication, oftentimes by months. Many smaller academic publishers, especially many smaller university presses do not possess that capability. Anything submitted to them will not be published until, realistically, the end of this year. By most accounts that would be too late to have any impact on the current outbreak.

Let's have a closer look at a typical submission-to-decision-to-publication situation with a global publisher. Say you submit on April 01 (I know, the joke is on me). If the editor of the journal moves quickly, they will decided within a day or two whether they will have the paper reviewed. So, they'd send out reviewer requests. Normally those invited would have a week or so to reply and decide on whether they're ok with doing the review. Takes us to April 10. Say, given the urgency, the first invitee agrees to review the content. They've anywhere between 2-4 weeks to submit their review. Some, with prodding, might be prepared to move faster on COVID19 papers, but given the deluge of papers submitted, their willingness might sooner rather than later wear thin.

We are now around the end of April. The reviews require that some changes are made before the paper is publishable. Let's assume that you're an efficient author, so you send the revised manuscript back to the editor. We're around May 10-15. The editor takes until May 20 to review the changes and accepts your manuscript. The paper is exported to the publisher's production people. After about 10 days you will see your proofs. You correct the proofs and return them to the publisher. Realistically, we're looking at the end of May. The publisher takes another week or so to make the necessary corrections and uploads your manuscript. So, in an ideal world, from submission to publication of your paper about 6 weeks would have passed. The odds are that you'd be looking at 8-12 weeks.

The pandemic you have been responding to will have moved on to a very different stage to what your paper aimed to respond to.

Some publisher offer to upload accepted manuscripts prior to copy editing and proof production, and replace them with the final version when it's ready. While this is faster, it also means that mistakes that would be caught during the copy editing process would be published and can even be cited, only to find that, in the actual published version, the mistake has been fixed.

The upshot of this is the following: With the exception of very few topflight biomedical journals the academic publishing process is too slow to respond meaningfully to ongoing infectious disease outbreaks. The fault for this lies not only in still fairly slow and cumbersome production processes of academic publishers, but also, and arguably more so, on the time it takes to maintain sound peer review.

What this suggests to me is this: If you plan on submitting content that is designed as an intervention in the currently ongoing outbreak, reconsider that. The pandemic will long have moved on from what was urgent at the time when you submitted your paper. Academic journals are not a sound target for your output. There might be alternative outlets, like, for instance the Journal of medical ethics blogs. I suspect in your field you might also have outlets for non-reviewed content, like SSRN, where you can upload your content while you wait for your paper to run through the peer review and production processes.

Focus on lessons that we can learn for future outbreaks.