Back to blogging - stuff is happening :)

I have been pretty quiet on the blogging frontiers during the last few months. I have been juggling various manuscripts, including a book manuscript, as well as teaching, so basically I was too tired to blog much (well, too tired to blog at all).

Anyhow, so here's an update:

Ruth Chadwick and I managed to send a first rough draft of our textbook to Wiley to have it externally reviewed. It will need quite a bit more work, but we hope to get this done during the summer months.

I have a lengthy review article on the ethics of Conscientious Objection accommodation in the British Medical Journal. You can find it here. 

The title is: Conscientious objection in medicine: accommodation versus professionalism and the public good.


I also, jointly with Justine Dembo and Jonathan Reggler have an Open Access paper in the Canadian Journal of Psychiatry on medical aid in dying and depression. You can find it here.

The title is: 'For their own good': A Response to Popular Arguments Against Permitting Medical Aid in Dying (MAID) where Mental Illness Is the Sole Underlying Condition.


There is also a completed book chapter to report in a Palgrave MacMillan handbook on, I think, political philosophy. I did that jointly with an undergraduate student at Queen's, Benjamin Zolf.

And there are various Editorial type papers, including (in German) this one on the use of ethical deliberation in the decision-making on public health policy.

Why Canada's assisted dying regime must not be limited to the terminally ill

A kerfuffle has broken out in the Canadian news media about eligibility criteria for assisted dying. The Supreme Court of Canada in its decision is unequivocal that limiting access to include only people who are about to die would be violating the Charter rights of other patients. Here are the core criteria the Court set, an eligible person would be 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.’ It is uncontroversial then that terminal illness cannot be a viable access threshold for the purpose of upcoming federal as well as provincial-territorial legislation. That hasn’t stopped constitutional ‘experts’ like Margaret Wente, a notorious columnist at the Globe and Mail to insist on just that. Experts celebrated in her piece include Harvey Chochinov, an anti-euthanasia activist appointed in the dying days of the Harper government to advise him on how to act on the Supreme Court judgment. Chochinov acted as a witness for the Harper government’s side during the trial. His evidence, obviously, did not convince the trial judge and her decision was upheld in what was a unanimous decision going against everything Chochinov argued for. It is no surprise that Wente, a writer not known for good judgment, celebrates Harper’s appointee on her Globe and Mail platform.

The Globe and Mail ran no less than at least three opinion pieces arguing that a parliamentary special joint committee as well as a provincial-territorial expert advisory group got it wrong when they included for instance people with intractable depression among those eligible for access to assisted dying. So, here’s a quick few notes on Wente. She writes that 110 psychiatric patients have been ‘euthanized’ in the Netherlands between 2011 and 2014.  The journal article she refers to actually notes that these were cases of euthanasia or assisted suicide, ie it is not the case that 110 patients were actually euthanized. Small difference in Ms Wente’s fantasy land.

Another highlight from Wente land, ‘The rationale [in the parliamentary committee report, U, Sch.] is that psychiatric patients should have the same rights as everybody else.’ Well, in Canada we have this little document called the Charter of Rights and Freedoms, and when we take a closer look at it, we will realise that competent psychiatric patients have the same rights as competent people who are not psychiatric patients. Labelling someone ‘psychiatric patient’ doesn’t miraculously do away with their Charter rights! Apparently the Globe and Mail does not have funding any longer for basic fact checking of the content the writers generate for its opinion columns.

Wente eventually claims that the numbers of psychiatric patients seeing their lives ended by assisted dying are growing fast. This is doubtful, given that the overwhelming majority of requests for assistance in dying from psychiatric patients are denied in the Netherlands. 2013 saw an increase in cases of euthanasia for patients with psychiatric illnesses. A total of 42 cases were reported—as is legally required—to the Dutch Euthanasia Review Committee. The 42 cases reported in 2013 compare against 12 in 2012. Of these 42 cases, 32 were investigated by the Committee in 2013 and the findings published. In 22 of these 32 cases, depression was mentioned as (one of the) the cause(s) of suffering. This brief, intermittent increase in cases is probably mostly due to the start of the ‘end-of-life’ clinic, an organisation that aims to grant euthanasia to all of, and only, those who fulfil the due care criteria in the Netherlands but who have been unable to obtain assisted dying from their physician. The start of this service in March 2012 led to a significant number of applications from patients who were determined to end their life by means of assisted dying, among them were a large number of patients with psychiatric illnesses (38% of applicants). Some 62% of these patients with psychiatric illnesses were refused an assisted death mostly because their death wish was judged to be more or less impulsive, and therefore did not meet the Dutch due care criteria. The Dutch Minister of Justice revealed in August 2014 in a letter to the Dutch Parliament that there were no signs of a further increase in 2014. Meanwhile, in Canada, Ms Wente claims as a fact dramatic increases in the numbers of psychiatric patients being euthanized. You need to do that, when all you have are 110 cases over a fair number of years, that don’t quite sustain claims of slippery slopes and out of control actions by laissez faire doctors. A number of those patients whose requests were denied eventually committed suicide by other means, a not uncommon occurrence among people with intractable depression. Among this small number (ie 110 people over a 4 year period in a country of about 17 million people) of psychiatric patients, the authors of the study that Wente goes on and on about in her column, looked more closely at only 66 of those cases, slightly more than half. It turns out that the majority of those cases consisted of patients suffering from depression. That is highly significant, because there are good reasons to make intractably depressed people (who can be assessed for competence and, because they are not imminently dying, for the endurance of their wish to die) eligible for access to assisted dying. I have published last year a journal article, co-authored by Professor Suzanne van de Vathorst, MD PhD, of Erasmus University Medical School in which we make the ethical case for why such people should be eligible for access to assisted dying, provided certain sensible safeguards are met.

Trudo Lemmens, a law professor at the University of Toronto has published two pieces in the Globe and Mail – apparently the ideological headquarter for this sort of activism. Not content with that, he published yet another piece (with more or less similar content) at the Impact Ethics website. I shall focus on the piece he has published there. Lemmens essentially has the same concerns that drive Wente and relies on the same evidence. He claims, ‘The [Canadian parliamentary, U. Sch.] Committee ignores the Court’s emphasis on the narrow basis of its ruling and the exclusion of “euthanasia for minors or persons with psychiatric disorders”. I encourage you to do a search for this quote in the SCC judgment and you’ll see that the Court actually did nothing of the kind. Nowhere does it exclude competent patients with psychiatric disorders from access to assisted dying. It’s plainly obvious already from the access criteria I began with, so Lemmens is using bits and pieces from rejected expert testimony to make his case. To be absolutely clear on this subject: there is no exclusion of competent psychiatric patients writ large in the Supreme Court of Canada judgment. Lemmens and Wente might not like it, but it is what it is.

Lemmens uses the same study that excites Wente to make the case that the Netherlands and Belgium have gone down a slippery slope that we would end up on if we made assisted dying available to patients who are not terminally ill. It is worth noting that the Supreme Court in its judgment explicitly rejects that line of reasoning. It writes, ‘The regime [in Belgium, U. Sch.] simply regulates a common pre-existing practice.  In the absence of a comparable history in Canada, the trial judge concluded that it was problematic to draw inferences about the level of physician compliance with legislated safeguards based on the Belgian evidence (para. 680).’ In any case, the study that is used by Wente and Lemmens to show how far down the slippery slope the Netherlands has gone, relies on the interpretation of 66 cases, of which the majority were patients with depressive disorder. Its authors conclude, ‘The granting of their EAS requests appears to involve considerable physician judgment, usually involving multiple physicians who do not always agree (sometimes without independent psychiatric input), but the euthanasia review committees generally defer to the judgments of the physicians performing the EAS.’ The important bit here is that requests for assistance in dying made by psychiatric patients involves considerable physician judgment, usually involving multiple doctors. That doesn’t look like powerful evidence of a country gone down the slippery slope to terrible abusive practices.

Lemmens eventually resorts to anecdotes from TV documentaries. We apparently have to take his word for it that the cases he describes are uncontroversial examples of abuse. It is my understanding that those who provided assistance in dying to the patients featured in the documentaries do not agree with Lemmens, so perhaps the story told by those who oppose the practice might be a tad bit on the biased side of things.

Remarkably, the Globe and Mail refused to allow for critical responses to these commentary style pieces. Because false claims were made in these pieces about supposedly terrible things happening to vulnerable mentally ill people in Belgium I asked an actual expert, Professor Jan Bernheim, MD PhD of the University of Brussels End-of-Life Care Research Group in its Faculty of Medicine for a reply to these diatribes. He kindly agreed to do so. It is noteworthy that the Globe and Mail chose not to publish his reply. At least a brief letter from the chairpersons of the provincial-territorial expert advisory group correcting the most flagrant error in one of the Globe and Mail pieces was published.

Contributions such as Wente’s and Lemmens’ do a disservice to the debate on what kind of regulatory regime we should introduce in Canada. Their campaign is difficult to understand, especially given the very small number of cases (anecdotes, to be frank) that opponents of a permissive regime rely on. I wonder whether it’s due to their inability to appreciate the suffering that many competent patients with intractable psychiatric disorders encounter throughout their lives. Or do they simply believe that such patients should just ‘stick it out’? The existential suffering patients with depression encounter, and that patients with intractable depression experience throughout their lives is equal to the most severe physical ailments. Empirical evidence from a large-scale study suggests that intensity of mental suffering, on average, is equal only to the most severe physical conditions. (Bernheim JL, Theuns P, Mazaheri M, Hofmans J, Fliege H, M.Rose. The Potential of Anamnestic Comparative Self-Assessment (ACSA) to Reduce Bias in the Measurement of Subjective Well-Being Journal of Happiness Studies. 2006;7(2):227-250.)

Several comprehensive surveys of assisted dying regimes across Europe as well as the Netherlands in particular concluded that there is no evidence that these permissive regimes put the vulnerable at increased risk. It is remarkable that that evidence is studiously ignored by campaigners like Wente and Lemmens. They are playing to public concerns about vulnerable psychiatric patients. We should be concerned about the suffering of many psychiatric patients, but the reality is that today, with the best available treatments, a large percentage of these patients do not consider their lives worth living. A few of those patients would avail themselves of assistance in dying. They are entitled to receive assistance once it has been established that they are competent to make that decision and once it is clear that their wish remains stable over time. The Supreme Court of Canada, in its wise decision on this subject matter heard evidence and concerns along the lines presented by Wente and Lemmens and concluded that we will be able to design a permissive regulatory regime that does not put psychiatric patients at risk, the same conclusion was reached by the parliamentary committee as well as the provincial-territorial expert panel in their respective reports. That is reassuring. I hope the upcoming governmental regulations both federally and provincially will be in line with the Supreme Court’s criteria and do not arbitrarily exclude competent patients with intractable illnesses that render their lives not worth living to them.   

Treatment resistant depression and access to assisted dying

I have long been in favour of offering access to assisted dying to competent people suffering from treatment resistant major depressive disorder. Other than the occasional newspaper column or blog entry I didn't have time to actually write a proper peer reviewed paper on the issue. Well, that's finally rectified. It came out yesterday. I jointly authored it with Suzanne van de Vathorst of Amsterdam University's Medical Centre. Here's the abstract:

Competent patients suffering from treatment-resistant depressive disorder should be treated no different in the context of assisted dying to other patients suffering from chronic conditions that render their lives permanently not worth living to them. Jurisdictions that are considering, or that have, decriminalised assisted dying are discriminating unfairly against patients suffering from treatment-resistant depression if they exclude such patients from the class of citizens entitled to receive assistance in dying.

Suicide by depressed people isn't always irrational

I reproduce below my column from last weekend's Kingston Whig-Standard.

We are pretty big these days at setting up mental health programs. Educational institutions, city administrations and non-governmental groups are tripping over one another offering helplines, counseling and awareness activities targeting mental health. These services are mostly aimed, it seems to me, at stopping people from ending their lives prematurely.

Statistics Canada reports that about 60% of people committing suicide in the country suffer from clinical depression. Doesn’t that show that there is a great need for all those mental health initiatives? Well, here’s another fact: anti-depressants ‘fail to result in sustained positive effects for the majority of people who receive them.’ For the majority of patients with clinical depression there exist no satisfactory therapies.

How does it feel to suffer from depression? What does it mean for a depressed person to have depression? Depression doesn’t affect me personally, but very close loved ones have been struggling with it for many years. There was even a suicide attempt that at the time I managed to prevent from succeeding. It’s heartbreaking trying to help a loved one in that state of mind. It’s not about ‘picking yourself up’, ‘getting on with it’ and what-not other phrases I have heard over the years from people unable to understand the devastating impact depression has on people for whom therapies fail. I have seen people try every possible combination of medication on the market, endless psychotherapy and everything else under the sun. Nothing worked. Invariably, hit by an anxiety attack, or unable to sleep for extended periods of time, their psychiatrist was nowhere to be seen and an appointment certainly wasn’t available when it was needed. Perhaps not coincidentally this is true across countries. I have seen similar patterns of service delivery failures in Canada, Germany and Australia.

To give you an idea of what it feels like to suffer from depression, here is a personal account by Deborah E Gray. She describes on her website the impact depression had on her. Check out the many comments left there by other people with depression. Here is a short edited excerpt from her much longer list: “You don’t feel hopeful or happy about anything in your life. You’re crying a lot for no apparent reason, either at nothing, or something that normally would be insignificant. You feel like you’re moving (and thinking) in slow motion. Getting up in the morning requires a lot of effort. Carrying on a normal conversation is a struggle. You can’t seem to express yourself. You’re having trouble making simple decisions. Your friends and family really irritate you. You’re not sure if you still love your spouse/significant other. Smiling feels stiff and awkward. It’s like your smiling muscles are frozen. It seems like there’s a glass wall between you and the rest of the world. You’re forgetful, and it’s very difficult to concentrate on anything. You’re anxious and worried a lot. Everything seems hopeless. You feel like you can’t do anything right. You have recurring thoughts of death and/or suicidal impulses. Suicide seems like a welcome relief. Even on sunny days, it seems cloudy and gray. You feel as though you’re drowning or suffocating. Your senses seem dulled; food tastes bland and uninteresting, music doesn’t seem to affect you, you don’t bother smelling flowers anymore.”

If this is what your life looks like, is it really unreasonable for some people to call it a day and try to end their lives?

Our interventionism should be predicated on preserving lives that are considered worth living by those who have to live them. I have given some thought over the years to our justifications for interfering with decisions by competent depressed people to commit suicide. Many of them simply don’t seem to withstand critical scrutiny. For instance, it is argued by some that we should interfere with suicide attempts by depressed people, because they don’t really mean to commit suicide, it’s their depressed state of mind that is driving them there. The assumption here is that there is some other personal identity hidden in the depressed mind. I doubt that’s true. There is only us at any given point in time, and for the majority of patients for whom anti-depressants do not work that is all there is. Their perception of their reality isn’t clouded by their depression. It is actually quite offensive to tell someone with depression that their reality is different to what it clearly is for them. We can try to justify intervening in such circumstances by slapping the label ‘mental illness’ on them, but really this just begs the relevant questions. It’s not the case that every depressed person who contemplates committing suicide is actually incompetent to make that choice. It’s also not clear why any of this should matter a great deal if the depressed patients’ experienced quality of life is such that they will still not consider their life worth living after our successful rescue attempt. What’s the point of existing if, on balance, you don’t think it’s worth it?

When do people decide to commit suicide? Surely for many this occurs when they consider their lives not worth living any longer and when they don’t see a realistic chance that their lives will improve in such a way that they will be worth living again. If that’s correct, at least for some people with depression suicide is a rational response to their suffering.

Lest I am misunderstood here: My plea is not for an end to our currently fashionable focus on mental health. If anything, we should probably consider ending the stream of those nauseating ‘know a depressed person’ initiatives and pour those resources into front-line services that would permit suicidal depressed people to access high-quality emergency services when they need them. After all, we need only so manyself-help guides for friends of depressed people. Equally though, we should also cease to see every suicide by a depressed person as a disastrous failure of our health care delivery system, or, indeed, as our own disastrous failure. It is only a failure in of clinical research to deliver drugs capable of helping many depressed people in a manner they consider sufficiently acceptable that they do not commit suicide. Perhaps that’s where our money should go.

Udo Schuklenk holds the Ontario Research Chair in Bioethics and Public Policy at Queen’s University, he tweets @schuklenk.

Lives not worth living and voluntary euthanasia

Most of the voluntary euthanasia crowd argue that we should permit competent folks who are suffering from a terminal illness, and who consider their lives not worth living access to death with dignity if they so wish. Death with dignity here is meant to include access to voluntary euthanasia and/or physician assisted suicide. The main reasons have both to do with the idea that we should respect competent people's choices particularly when it comes to how they wish to end their lives, and also with the view that there is little point in sticking around when you suffer from a terminal illness, and there is no prospect that you'd be able to enjoy your life sufficiently again that you yourself consider it worth living. So, it's not about a Nazi declaring your life not worth living, but that you yourself say that you wish to die, because you yourself do not consider your life worth living any longer.

I find this argument by and large persuasive, but it strikes me as mostly strategically motivated. Opponents of voluntary euthanasia have long been arguing that accepting this argument, and translating it into policy would lead us down a slippery slope to non-voluntary euthanasia (say folks get killed a) against their express wishes [there doesn't seem to be any evidence whatsoever to support this claim, at least with regard to countries that have since legalised voluntary euthanasia], and b] that incompetent folks get killed). The latter point is quite dicey obviously. If you've someone who meets the other criteria (terminal illness, overwhelming impact on that patient's quality of life), and you know that competent people under such circumstances often (but not always!) demand voluntary euthanasia or physician assisted suicide, how are you to go about someone unable to express an autonomous choice?

Anyway, my main question today is somewhat different, but also somewhat related to the incompetent patient. As you may or may not know, very many people suffer from clinical depressions. It's truly a debilitating disease that renders the quality of life not worth living for many of those affected. Some of the anti-depressants that are on the market work for some of those affected, but for many patients these drugs do not work, or do not work reliably over time, or do not work sufficiently well to permit them to enjoy their lives again. It goes without saying that depressive people have suicidal thoughts that are usually caused by their depression.

But, here is the question: If a given depressive patient has tried and tested the available anti- depressants over reasonable periods of time, and they fail to do the trick for her, would it be unethical if a doctor complied with her request for an overdose of some drug cocktail or other that would permit her to end her life? If the legitimacy of decisions on voluntary euthanasia or physician assisted suicide rests on a patient's evaluation of her experienced quality of life over time, who are we to say that a depressed patient 'because she is depressed' should not be respected in her wish to end her life?

My view would be that we should acknowledge that depression might be the major factor triggering her demand to die with dignity, but equally that unless we're able to do something successfully (in her judgment, not our's) about her depressions, we should respect her choice. At the end of the day, whether or not we consider our lives worth living should be the decisive factor with regard to society respecting patients' end-of-life decision making. The question surely is not whether their condition is terminal but whether there is a reasonable likelihood that the condition that renders their life not worth living (in their judgment!) can be fixed in the foreseeable future. If the answer to this question is 'no', or 'most likely not', it does not matter whether the condition we are concerned about is of a terminal nature. It does not help a great deal to go on about depressed people being not competent to evaluate exactly how they feel about their lives. The fact of the matter is that they know perfectly well how it is to live with depressions, they understand that it is their depression that stuffs up their lives, but also that nothing that they tried worked to bring their lives back to reasonably livable normality. To use that experience to declare them incompetent to make choices about ending their lives seems absurd to me.

Am I missing something?