Trudo Lemmens: Medical Aid in Dying in Canada: A Case Raises Questions About Its Use in Patients with Disability and Mental Illness
David Healy’s Comments
Trudo Lemmens outlines a stark case that speaks to the slippery slope that worries many in respect to Medical Assistance in Dying (MAiD).
I tried to insert myself into the debate about extending MAiD to people who could make a case to terminate their lives on mental grounds. I made contact with a local politician thought to have some reservations about the process being extended. But he never responded. Forums publishing pro-extension arguments refused to publish a response (see below).
The provision of MAiD is under review in Canada with debate about access for patients with mental illness.
An amendment to the draft legislation eliminating the exclusion of people with mental illness was proposed by Senator Stan Kutcher, arguing mental illness is as real as physical illness, that it can lead to great distress and people taking their own life in any event.
In recent years in some European countries patients have accessed MAiD for Treatment Resistant Depression (TRD). The most notable cases have been younger women.
Arguments against this amendment express concern that people with mental disorders may be pressured to opt for death, essentially for the convenience of others and of services that are not adequately funded.
Some have argued that mental disorders are somehow immaterial in contrast to physical disorders. Major medical groups in response claim mental disorders are as physical as any other disorders.
Real or Not?
The position adopted here is that mental illnesses are real illnesses. By this is meant that conditions like schizophrenia and manic-depressive illness involve physiological dysfunction and are not immaterial in some way, or attitudinal or simply distress.
Before 1980, mainstream psychiatry did not regard personality disorders or what used to be called neurotic disorders as biological illnesses. The Third Edition of the Diagnostic and Statistical Manual for Mental Disorders (DSM III) published in 1980, attempting to bridge a divide between psychodynamic and biological psychiatry and claiming to be agnostic about the nature of mental conditions, collapsed distinctions between neuroses and diseases into the category of disorders.
Some of what are now called mental disorders involve conditions that have been traditionally viewed as underpinned by physiological disturbances as much any physical illness. Others do not. Disorders like schizophrenia and manic-depressive illness are as much brain illnesses as epilepsy. The personality disorders and neurotic disorders also coded in DSM III are not brain illnesses like epilepsy. If illness in the sense of physiological dysfunction is a key criterion for MAiD, a case can be made for excluding these disorders. But there is a complicating factor.
Curability
Bearing in mind the hazard of diagnostic imprecision, unlike other psychoses, schizophrenia has traditionally been viewed as incurable. (It is possible that a patient diagnosed as having schizophrenia might present to a doctor who correctly suspects the diagnosis is wrong and the patient can be cured).
Hardcore schizophrenia is now somewhat remediable. Patients with other psychoses can show complete recovery between episodes as much as patients with arthritis for instance.
Schizophrenia is at present declining in frequency for reasons that are unclear but probably link to an environmental factor such as lead (this illness was not present before the mid-nineteenth century).
Manic-depressive illness is an episodic illness with patients making a full recovery between episodes. A century of admissions to asylums before we had any treatments for either mania or depression offer enough data to work out whether these conditions ever failed to recover. Essentially none failed to recover. Even the most severe psychotic depressions that had to be tube-fed recovered on average in 5-6 months, with fewer relapses than happen now.
TRD was an unknown concept before the advent of modern pharmaceuticals. The examples of Enduring Sexual Dysfunctions induced by treatment (See MAiD and PSSD) and the protracted withdrawal syndromes people trying to get off antidepressants suffer attest to the risks of treatments creating conditions that never existed before.
TRD is a retread of Treatment Resistant Schizophrenia (TRS). TRS originally referred not to a treatment resistant condition but a group of patients more likely to respond to clozapine than other antipsychotics. This was a polite way to tell doctors that giving their patients clozapine, which could not be safely given in high doses, would stop them poisoning patients, who as a result would benefit, sometimes significantly.
The radical step of stopping doctors poisoning patients is not an option with antidepressants in that several million Canadians now taking them are simply unable to stop. Many of these patients do not benefit from treatment other than in so far as it staves off withdrawal.
TRD is a marketing construct aimed at adding additional treatments to the mix the patient is already on. Pharmaceutical companies are using conditions their products have created to market yet further products that far from alleviating the index conditions are more likely to aggravate the problems, which companies will use to create further markets.
MAiD and TRD 1
The group of conditions subsumed under the heading of TRD are a set of serious and incurable physical illnesses.
They are the physical consequences of treatments some of which are given for mental disorders (personality disorders and neuroses) and others for physical conditions.
The distress TRD causes appears to be as intense as is the distress caused by conditions that have hitherto led people to seek out MAiD.
There are at present no clear prospects for a cure of the condition or for relief from distress.
MAiD and TRD 2
There have been concerns that people may be pushed toward the irrevocable step that is MAiD because families or the State do not offer supports that might make a difference and these supports are less likely to be developed if MAiD is made too easy.
TRD suggests another factor should be considered.
These conditions result in part because the entire medical literature on on-patent drugs is ghost-written and there is no access to the data from healthy volunteer and clinical trials that were undertaken to bring these drugs on the market.
The data make it clear that these conditions were foreseeable. With access to the data the conversations between doctors and patients would likely have been quite different.
Senator Kutcher was an “author” on a famous study of paroxetine given to adolescents commonly referred to as Study 329. The paper was ghostwritten. It is unlikely Dr Kutcher has had access to the trial data other than the patients he himself entered into the study. Study 329 led New York State to file a fraud action against GlaxoSmithKline, the makers of paroxetine, and in 2012 the US Department of Justice to take an action against GlaxoSmithKline that resulted in the then largest sum handed over to resolve a corporate case of this kind - $3 Billion (USD).
The process of ghostwriting articles and sequestering clinical trial data began in earnest a little over 30 years ago and since then the time between doctors becoming aware of and generally accepting the hazards of their treatments has increased from roughly a year to several decades. The aggressive marketing of TRD meanwhile makes it very difficult for anyone now to recognize these conditions for the treatment induced conditions they are.
In the case of adolescents given antidepressants, there have been 30 trials undertaken all negative, but mostly portrayed in the medical literature as positive, with the trial Dr Kutcher was involved in being the most striking example of a negative trial of an unsafe drug that was written up as effective and safe.
The upshot of this is that on the one hand we have the greatest concentration of evidence against a set of treatments ever assembled but those treatments are now quite possibly the second most used drugs by adolescent girls who are unlikely to benefit and highly likely to be harmed.
This is the group of patients with “mental illness” now most notably accessing MAiD in Europe. Young Canadian women with TRD, put in this position at least in part by practices that prioritize commercial considerations over scientific, moral or clinical considerations, are likely to turn to the same option. Any extension to current legislation should ideally address this question.
What follows is one of two attachments to a letter I sent to three Canadian Members of Parliament.
David Healy MD February 17th 2021
For those new to the Enduring Sexual Dysfunctions - PSSD, PGAD, PFS and PRSD - mentioned by David Healy there is a page about them on RxISK.org along with a good deal of published literature that can be downloaded. There are many additional posts on RxISK about both these conditions and Treatment Resistant Depression.
In response to the above, I had a comment from “Gus”:
Are you people for real? Is this MD for real, saying “Essentially none failed to recover. Even the most severe psychotic depressions that had to be tube-fed recovered on average in 5-6 months, with fewer relapses than happen now.” This is completely false. How can such a lie be stated.
What is being said against MAID and those who really do suffer intolerably for years from intolerable suffering is beyond idiotic. The suffering is real people. Many are helped by talk therapy, and perhaps meds (although I am skeptical), some people are not. Their lives are destroyed. They lose their jobs, their families, their life. This is a fact, despite many of them being highly intelligent and capable individuals, who have received the best care possible. Wake up! I encourage you to google Adam Maier-Clayton, and read his story. Most importantly, listen to what his mother has to say.
Listen up Gus
When it comes to the data Gus, I have more data on these issues than pretty well anyone else on earth. You can download a good deal of it later on in this post. If you don't have data to counter the following points, if you don't have anything to say that is, it might be best to shut up. Idle comments will not be posted. Anything of substance will be posted, as well as any amusing abusive material that might shed light on you.
The Data
First, it is unquestionably the case that even in the pre-drug era people with severe Manic-Depressive Illness committed suicide. This was part of the reason for asylums - to prevent suicides and the asylums were much more successful than modern hospitals when it came to this. We are more successful now at secluding people for record periods of time even though this verges on the illegal than we were back then. Finally, no-one back then would ever have believed that one day we'd be offering to servicecide you as a matter of course - once the paperwork was in order.
Once in a hospital like the North Wales Asylum, people with depressive psychosis or manic-depressive illness found it very difficult to kill themselves.
The second point is that if they had a depressive psychosis, they invariably recovered and didn't relapse.
Third, if they had manic-depressive illness - the real thing not bipolar disorder - they had relapses but fewer than now. They were much more likely to be euphoric when admitted to hospital then compared with now and they spent much less time miserable and depressed then compared with now.
Fourth, there was another group of patients in hospital who had schizophrenia - something of a living death with patients hospitalized till they died. This was the biggest group of people in any asylum. But despite this, before the antipsychotics none of these people killed themselves.
Since 1955, with the advent of antipsychotics people with schizophrenia kill themselves at rates equalling the rates found in manic-depressive illness. This is not because they can't cope with life outside. It's primarily down to the akathisia inducing effects of drugs like Olanzapine (Zyprexa) which appears to have the highest rate of suicides in clinical trial history. Eli Lilly, the makers of Olanzapine, refuse to release their trial data into the public domain.
Pretty well everybody with what is now called Treatment Resistant Depression will have had antipsychotics like Olanzapine or Abilify or Rexulti - drugs I would never willingly prescribe to anyone. How could I, if I can't let you know what the risks are? Besides there are safer antipsychotics.
What we have in the case of TRD is a bunch of people who have effectively been chained down and forcefully chain-smoked for years and had alcohol poured down their throats non-stop who end up with cancers or dementia and in such awful shape death is preferable.
Who benefits by terminating them? The neat thing about a sanctioned medical procedure is that questions like this will be buried with you.
It's likely that even in the case of Motor Neurone Disease, aka Amyotrophic Lateral Sclerosis, aka Lou Gehrig's disease, that a proportion of these horrific states have been triggered by prior drugs. The statins are linked to this condition (this is data based). SSRIs seem likely linked as well (this is based on my clinical experience).
MND/ALS is such an awful condition that I imagine if I had it, regardless of the likely cause, I might want medical assistance in dying.
But except in extreme cases, there are a number of issues to keep in mind.
Sting-Free Death
First, most (90%) of the diseases from which we are likely to die, from cancer to dementia to whatever are environmentally precipitated. This is what the epidemiology points to. Even schizophrenia seems linked to an environmental toxin, possibly lead - this illness didn't exist before we began putting lead in everything including the food we ate and medicines we took and its incidence is now declining as we clean lead out of everything.
The toxins in our environment, out of which someone is profiting, are the single biggest cause of death. Along with the toxins we increasingly put into ourselves.
When chosen collaboratively and wisely, short term courses of poisons to combat serious disorders can save lives, along with a few treatments like insulin, but the evidence is increasingly clear that chronic and daily treatment with three or more and especially five or more drugs is shortening our life expectancy, increasing hospitalization rates and impairing our quality of life.
Against this background, taking SSRIs that are arguably misbranded as antidepressants and which many people find impossible to stop, ain't a great option.
Second, manic-depressive illness, schizophrenia and depressive psychoses can be managed without going M.A.D.
Of the mental conditions likely to hit mental health services then, this leaves what were once called the neuroses and the personality disorders. People with these conditions are pretty well certain to have been compromised by being stuffed full of SSRI and related drugs as well as antipsychotics and anticonvulsants - all of which take the pleasure out of life, induce a restlessness that most militaries have found a useful form of torture, and trigger active thoughts of death. These are not things that any talking therapy can help with.
In addition, as the words neurosis and personality disorder indicate, these conditions entail a degree of maladaptation to at least some situations. Being poisoned by prior treatment is a situation anyone would find difficult to adapt to and in this case the problem is not, strictly speaking, of the person's own choosing even if they all but begged for treatment. It was not freely chosen in the sense of being fully informed in that the literature on these drugs is entirely ghostwritten and the risk of ending up in a state of chronic agony, so bad you might prefer to be dead, were written out of the script. But it happens, extremely frequently, to people who were once viewed as being likely to adapt poorly to things generally.
Finally, and most important, a proportion of those you, Gus, are likely to seek treatment from will themselves be neurotic and personality disordered.
You, Gus, can easily seduce them into believing you have three or five or 10 different personalities and they will work hard to help you cement these in place and gratify you by telling the world about this amazing patient they have.
You can get them totally on board with the sexual abuse that happened to you on an alien spaceship at the age of 1.
You can talk them into thinking that letting you expire in a languorous fashion with a draft of some feel good liquid is one of the most uplifting things they have ever participated in - setting your spirit free of all that pain.
Some of them won't be doing this because they are totally stupid. Some of them will be doing it because they enjoy it and think you are totally stupid.
I have no problem with the idea that you find this hard to believe just like most Catholics for a long time found it hard to believe their priests were anything other than saints. But you won't be doing anyone any favors by closing down discussion of the safeguards we all need in this area.
*****
My efforts at publication were in response to this February 15, 2021, piece from Jocelyn Downie and colleagues:
Jocelyn Downie, David Wright and Mona Gupta
Should people with mental illness as their sole underlying medical condition be allowed to have access to medical assistance in dying (MAiD)? That’s a question in front of Parliament right now. The House of Commons has passed a Bill that excludes MAiD for persons suffering from mental illness as their sole underlying medical condition. The Senate amended that Bill to put a sunset clause on the exclusion (it will cease to have any force and effect 18 months from the coming into force of the Bill). Soon the amended Bill will be back before the House, which will have to decide whether to accept the amendment.
Notably, in its report on Bill C-7, the Senate standing committee on legal and constitutional affairs wrote that some witnesses “underscored that an exclusion and strong safeguards are needed to protect Canadians with mental illness under a MAiD regime, especially given that suicidality may often be a symptom of certain mental illnesses.” Unfortunately, this way of thinking about the relationship between suicide and MAiD confuses more than it clarifies.
Suicidality is associated with certain psychiatric diagnoses, but by no means all or even most of them. Furthermore, not all persons who are suicidal have a mental illness. Rational suicide – the desire for individuals not suffering from a mental illness to end their own lives – has always existed. Indeed, the entire project of MAiD is premised on the idea that there are individuals who under certain circumstances have justifiable reasons to end their own lives. In addition, Parliament has already taken the position that the presence of a mental illness itself does not exclude the possibility of a rational desire to die, as there are people who have already legally accessed MAiD who suffer from both mental illness and physical conditions concurrently. (See the Feb. 2 testimony of Dr. Derryck Smith at the Senate standing committee, at the18:02:40 mark.)
From a clinical point of view, decisions to try to prevent someone from dying are not motivated by the mere presence or absence of a diagnosable mental illness. Rather, we intervene in order to try to modify their specific circumstances, such as a personal crisis, or the acute symptoms of their illness. Our actions also depend on whether the person is able to act in their own interests. We are likely to intervene to prevent the death of a person who is considering suicide when they lack decision-making capacity, for instance when they are severely intoxicated, even if they have no psychiatric history.
By contrast, we do not necessarily intervene to prevent the death of a person who wants to refuse life-sustaining treatment or to access MAiD due to a physical condition even if this person has a concurrent serious, and chronic, psychiatric condition. The answer to the question –does this person have a mental illness? – does not tell us whether we should prevent or assist the person ending their life.
When it comes to mental illness and MAiD, therefore, we must determine whether an individual seeking to bring an end to their life should be prevented from doing so, or not. Trying to decide whether the person is “suicidal” is simply shorthand for talking about the kinds of circumstances previously mentioned – personal crisis, acute episode of illness, incapacity, among others – where collectively, we have already determined that we should intervene to prevent a person from acting. The possibility of permitting some individuals with mental illness to make a request for MAiD does not impede suicide prevention efforts in these kinds of circumstances.
Thus, the statement “suicidal behaviour can often be a symptom of mental illness” is at once too broad and too narrow. It misuses the idea ofa symptom as a proxy for situations in which we want to act to prevent death. And by focusing on only those circumstances in which suicidality is a symptom of a mental illness, it simultaneously ignores the fact that there may also be situations in which we want to prevent death amongst those with no diagnosed mental illness at all.
By legalizing MAiD, Canadian Parliament has already decided that, in certain circumstances, it is acceptable to assist someone to die. Instead of excluding mental illness through a reflexive association between mental illness and suicide, we propose reframing the debate about MAiD and mental illness by asking: In which circumstances do we, as a society, wish to prevent death? In which circumstances, and under what safeguards, are we prepared to assist its arrival? By avoiding the shortcuts of medical terms, we can clarify what’s at stake and focus the debate on what criteria and safeguards will prevent those deaths that we should prevent.
Assisting Consumerism in Dying (ACiD)
David Healy
The Downie, Wright and Gupta’s February 15th points about MaiD center on issues of capacity and consumerism.
Opting to end a life can indeed be quite rational. The role of medicine in their model is primarily to decide whether the person deciding to end their life has the capacity to do so. The focus is on the consumer of a medical service.
This neglects physicians. Medicine is the perfect place for a murderer to hide and medicine may have or have had more doctors who murder their patients than the Catholic Church has had pedophile priests. For these MAiD will be a godsend. There have always been physicians who find the removal of a healthy limb in someone with apotemnophilia technically satisfying. For the technician in some doctors MAiD will be also satisfying.
Some physicians opt to do labioplasties and sculpt breasts rather than repair perforated duodenal ulcers, but most distinguish between plastic and cosmetic surgery. The wider public both view it as a good, and also in the public interest, to financially support the restoration of someone disfigured, perhaps while working on our behalf as a firefighter for instance, to something more like their normal self. We hope that in so doing they will be better able to contribute to the greater good. In contrast, we sense that individuals seeking cosmesis should pay for themselves.
MAiD in the case of someone with terminal Motor Neurone Disease is something many doctors and a wider public would quietly support, but can we avoid paving a way to cosmetic or romantic deaths?
For some decades, bioethicists have been concerned that doctors exercise ever less discretion in their dealings with us. Pharmaceutical corporations certainly believe that few doctors have a thought in their minds not put there by them or their competitors.
Company control has extended from the primary consumer, the doctor, to us who go to doctors having diagnosed ourselves with ADHD, ASD (autistic spectrum disorder) or other conditions, based on marketing materials put in our way by pharmaceutical companies. These diagnoses are fashionable and can suck people in, perhaps young people in particular, in the way cults do. While some doctors will try to persuade us that consumerism and poisons (medicines) or mutilations (surgery) are not natural bedfellows, and some of us can be persuaded, an increasing number of us complain if we are not given what we want. We have the rating scale score, where’s our drug?
We are now in a world of medical neo-liberalism. Health services have replaced Healthcare. We face Margaret Thatcher’s phrase of the 1980s - there is no alternative to the logic of the market. While clearly every case must be dealt with on its merits, are we saying anything goes? If anything goes, the strongest players in the game will give us as many disorders as they can and hook us into as many medical services as possible, even assisted dying.
In the case of patients with significant disabilities induced by treatment such as Enduring Post-Treatment Sexual Dysfunction or Treatment Resistant Depression, who seek MAiD, will the panels see it as their brief to do anything about this? It’s difficult to imagine MAiD panels raising concerns about patients with lung or other cancers caused by tobacco or other carcinogens. Who benefits from viewing the administration of lethal agents in these circumstances as just a technical operation without entailing wider obligations?
MAiD, as a health service, contrasts with Healthcare which traditionally has been about relationships that enable people to endure and “heal” - even when the condition is terminal. This is not something technicians or panels can deliver.
It has seemed appropriate to reserve the extreme form of caring that MAiD involves to illnesses rather than distress and extreme illnesses rather than just any disorder.
It has seemed appropriate to have a sanction of murder in place when a doctor supports a patient in this way requiring others to decide if this constituted care. It makes sense not to drag all doctors caring in this way through a murder trial, but by exactly how much do we want to loosen this sanction? Do we want doctors to simply carry out a technical procedure without engaging in the wider issues on behalf of their patient?
References:
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. Third Edition. Washington: APA; 1980.
Downie J, Wright D, Gupta M. What’s the relationship between suicide and MAiD? Options, Policy/Politiques. policyoptions.irpp.org/magazines/february-2021/whats-the-relationship-between-suicide-and-maid/.
December 30, 2021