Blog by Neil FrancisPosted on Saturday 14th October 2023 at 2:40am
Branka van der Linden on the anti-VAD "HOPE" website
I haven’t written for a while, but was prompted to do so by my friend and colleague Ian Wood. He pointed me to an email just sent about by Branka van der Linden of the anti-VAD “HOPE” blog site.
I've written about Ms van der Linden's musings before, including:
In her email, Ms van der Linden wrote provocatively against the Netherlands’ voluntary assisted dying (VAD) law, citing a recently-published medical journal study of Dutch VAD cases that involved people with intellectual disabilities or autism spectrum disorder (or both). The study is a legitimate examination of cases published by the Dutch Euthanasia Commissions, and contains numerous observations and some qualifications.
The first whopper
Mr van der Linden cherry-picks a single item from the study — that a majority of qualifying cases examined reported feeling socially isolated and lonely — and presses that into strong emotional words about “not caring” for people.
She failed to identify any other important aspect of either the study, or Dutch law, including:
The article reported that two thirds (67%) of the cases had profound somatic (physical) conditions as well. Comorbidities are very common in Dutch VAD cases.
The Dutch law requires:
The request to be well-considered
The patient’s suffering to be lasting and unbearable
The patient to be fully informed
The patient holding the conviction that there was no other reasonable solution, and
The attending doctor consulting a second doctor who also furnishes a written opinion about the qualification criteria.
So much for context and balance.
And she goes on.
The second whopper
Ms van der Linden then categorically and confidently states that:
“Like every other country that has legalised euthanasia, the debate in the Netherlands was initially about euthanasia for those with terminal illnesses. That has now shifted to approving requests for euthanasia for people with autism. This is the inevitable trajectory once a jurisdiction approves euthanasia laws.”
So much hyperbole. Let’s examine the facts:
Netherlands: The Dutch VAD law was legislated in 2001 and came into effect early 2002. It allowed non-terminal cases (including psychological) to qualify right from the outset.
Netherlands: Prior to the legislation, there was a period, from the 1980s, where VAD was approved by regulation (not legislation). Was that for terminal-only cases? Nope. Right from the outset, Dutch law permitted non-terminal cases.
So, Ms van der Linden’s claims about the Netherlands are foundationally false.
Now, on to the “inevitable trajectory” claim.
Belgium: Changed from terminal-only to non-terminal? Nope. (Non-terminal from the outset.)
Luxembourg: Changed from terminal-only to non-terminal? Nope. (Non-terminal from the outset.)
Switzerland: Changed? Nope. (There have been no statutory qualification criteria since 1942.)
USA states:Any of the lawful USA states, including Oregon where VAD law has been in effect since 1997, changed from terminal-only to non-terminal? Nope.
Australia:Any state changed from terminal-only to non-terminal? Nope.
Ms van der Linden’s claim is contradicted by so much evidence.
Canada: There is one notable jurisdiction where qualification criteria have changed, and that’s Canada. Changes have been many years in the making, involving nation-wide conversation and debate, steered by its legislature and most senior court. Many points have been thrashed out as representatives consider the issues and settle on what a majority of the nation's own citizenry (not Ms van der Linden) believes is appropriate.
Importantly, it’s worth noting that even with additions to qualification criteria set in law in Canada, they are still considerably more restrictive than in Switzerland — because Swiss legislation doesn’t stipulate any qualifying criteria. Yet Switzerland’s assisted dying rate is lower than Canada’s. It’s a cultural difference.
Changes to qualification criteria are very much the exception, not “inevitable” as Ms van der Linden wrongly states.
Two claims — both whoppers
It’s hard to imagine that Ms van der Linden, being so immersed in the VAD subject as she is, could be so unaware of the most fundamental facts. But maybe she is, despite the facts being easy to source. Such ignorance renders her an “unreliable witness”.
To my mind, repeatedly failing to establish the actual facts while confidently stating “counter-facts” that are not true — especially in order to influence others in support of one's personal ideological position — would be consistent with an impoverished sense of ethics.
Conclusion
I admire and respect Ms van der Linden’s passion for doggedly pursuing what she believes is right, and I’m thankful we live in a robust democracy that allows people to express and debate views consistent with their internal values.
What, I argue, isn’t worthy of admiration or respect is to repeatedly misinform one’s audience by failing to undertake the most basic checking to determine if what one is saying is fundamentally true, let alone balanced or contextually relevant.
Blog by Neil FrancisPosted on Monday 1st April 2019 at 9:59pm
A forensic analysis exposes Theo Boer's smoke and mirrors on 'suicide contagion'
In my most recent article in the Journal of Assisted Dying, I forensically analyse Dutch ethicist Professor Theo Boer’s 2017 paper purporting to find suicide contagion from assisted dying in the Netherlands. It doesn’t go well for Professor Boer, to put it mildly. You can find the full article here.
I also find an astonishing coincidence that occurred in 2014, the year Boer went feral against the Dutch euthanasia law.
Multiple fatal flaws
In the ‘analysis’ outlined in his article, Boer commits a number of fatal scientific no-noes, including failing to analyse the variable he actually surmised might cause suicide contagion, cherry-picking data that supported his conclusion while ignoring or offhandedly dismissing data at odds with his conclusion, and wrongly forming a causative conclusion from a simple correlation while failing to control for any confounding variables of which there are many.
A litany of scientific offences
In addition to the fatal flaws, Boer’s article contains numerous other scientific and academic offences. My forensic analysis concludes:
“In summary, Boer’s article contains a litany of scientific and scholarly failures. Its speculations are ill-informed, poorly-assembled, incoherent in places and mostly uncited, the data cherry-picked and invalidly interpreted, and the laissez faire methodology incapable of validly supporting its conclusion.
Boer conjures up mere smoke and mirrors to argue suicide contagion from VAD in the Netherlands. The article should be retracted.”
The article also reflects badly on the journal that published this smoke and mirrors: the Journal of Ethics in Mental Health. Neither peer review nor editorial effort identified or attempted to correct any of the nonsense in the article.
What was he thinking?
Professor Boer is an expert in Reformist Protestant theology. As a religious ethicist, it’s astonishing that he considered himself suited to conducting and publishing a ‘causative’ scientific study.
In his article, Boer proposed VAD as the only factor to contribute to changes in the Netherlands’ general suicide rate (and dismissed the Belgian data which contradicted his theory).
In reality, numerous risk and protective factors affect the suicide rate, and in the Netherlands as I’ve established using their official government data, just one factor — unemployment — explains 80% of the variance in the Dutch suicide rate since 1960. Boer casually dismisses this without providing the faintest fume of an empirical analysis himself.
Boer’s article did little but amply demonstrate his underlying anchoring and confirmation bias on the subject, his unfamiliarity with the complexity of suicide, and ignorance of proper scientific principles.
For good measure, he casually threw in a comment about “suicide contagion” or copycat suicides, without understanding that in suicide, copying is the method of causing death. But by definition, general suiciders don’t follow the provisions of the euthanasia Act.
His endeavour made as little sense as me writing a conclusive article about Reformist Protestant theology, about which I know very little.
A copycat analysis?
Coincidentally, the structure of the storyline, the litany of scientific offences committed, and the conclusions reached in Boer’s article were surprisingly similar to those in an ‘analysis’ of Oregon’s suicide rate in another paper by Jones and Paton. Like Boer, Jones and Paton start out by surmising that assisted dying ought to lower the general suicide rate, and conclude the opposite.
Boer approvingly cites the Jones and Paton article, even though a forensic analysis found no fewer than ten major scientific flaws in it and provided multiple sources of empirical evidence at odds with the article’s conclusions.
But Boer manages to cock even the citation up, referring to the article’s authors as Holmes and Paton.
Will the real Theo Boer please stand up?
Boer notes that he’s always been a euthanasia sceptic. Nevertheless, as a Reformist Protestant, he had long accepted assisted dying in “emergency” situations, of which intolerable and otherwise unrelievable suffering is a ‘qualifying’ criterion, and which is the substance of the Dutch euthanasia law (it’s regarded in legal circles as a law of “necessity”). He also opined that the Dutch model was a decent one that other jurisdictions could emulate.
Boer served as the ethicist member of one of the five Dutch euthanasia review commissions, examining every case reported to it between 2005 and 2014.
In 2014 he publicly quit his post on the review committee, slamming the Dutch assisted dying system. He’s been badmouthing it to anyone who will listen, since.
In preparation for this analysis, I asked Boer if his vocal opposition to the Dutch assisted dying model was now based on an in-principle opposition to assisted dying, or only in regard to more recent practice under the Dutch euthanasia Act. Despite a couple of iterations, I didn’t get a specific answer.
The law hasn’t changed
Here’s the point. While Boer repeatedly opines that things changed radically in the Netherlands around 2007, the country’s euthanasia Act hasn’t changed since it was passed in 2001 (and came into effect in 2002). Not. One. Word.
In addition, the Dutch Supreme Court determined in 1994 that individuals with mental (in the absence of concomitant physical) illness could qualify under the then regulatory euthanasia framework, and it was found that cases occurred every year.
And the 2001 Act formalised in statute the regulatory framework that had existed since at least 1984, when the Dutch medical association first published guidelines for euthanasia.
Thus, the Act reflects very long-standing practice, and it hasn’t changed since it was enacted, in contrast to Boer’s claim that things have radically changed.
Flimsy and incoherent ‘ethics’ part 1
This brings us to the first fatal incoherence of Boer’s “ethics”: that he now opposes the law because people with psychiatric illness and other conditions are, in slightly increasing numbers, availing themselves of the euthanasia law. It is these cases against which Boer rails, despite having previously said the Dutch model is a good example for the world, and having actively participated in the system.
Boer’s flip flop is to argue that a law that permits assisted dying under a range of medical conditions (and has done so for decades) is a good law, provided some of those who might qualify (like psychiatric cases) never use it.
Try and explain the ethics behind that position.
Flimsy and incoherent ‘ethics’ part 2
The second fatal incoherence of Boer’s ‘ethics’ is his repeated complaint that until around 2007, the numbers of euthanasia cases was “somewhat steady”, but increased after that. Never mind that the majority of the increase was still in relation to terminal cancer: Boer simply railed at the increased numbers as a major problem.
But, try and explain using ethical principles, why it is appropriate for 2,000 people a year to avail themselves of the euthanasia law, but inappropriate for 4,000 (who all qualify)?
Indeed, the Dutch euthanasia Act makes no mention of numbers: there is no legislated limit on the count of people who might choose to use the law. Rather, it is based on due care criteria, outlining the circumstances of who may qualify, and the process by which they may.
The legislature’s intent remains unchanged and is still being adhered to, though more people, the majority of whom have terminal cancer, are using the law.
It’s astonishing that a Professor of Ethics fails to reflect on the fatal incoherence of his own ‘ethical’ arguments.
What happened?
Boer, who had supported and promoted the Dutch euthanasia model suddenly and incoherently changed his position to vocally opposed in 2014. What happened?
One factor might shed some light. In 2014, Boer was appointed to the endowed professorship of Lindeboom Chair in Ethics in Healthcare at Kampen Theological University.
While Kampen Theological University is a Dutch Reformist Protestant institution and therefore may support assisted dying in “emergency” cases, the Lindeboom Institute, which endows Boer’s eponymous professorship, is less understanding.
The Lindeboom Institute was co-founded by several orthodox Christian institutions and cooperates with the Netherlands Evangelical University which studies science from an creationist Biblical perspective.
The Institute demands “biblically sound medical ethics” along with “Christian norms and values”. You’d be left wondering what that actually means, until you find on its website that the Board’s role is “the protection of people at all stages of life”.
In addition, participating organisations that fund the Lindeboom endowment, like the Dutch Patients Association, Pro Life Health Insurance and the Foundation for Christian Philosophy, are strongly opposed to assisted dying in any form.
It turns out that the authors of that other ‘analysis’ that commits numerous similar scientific offences which generate smoke and mirrors, Jones and Paton, are devout conservative Catholics.
The F filesPosted on Saturday 18th November 2017 at 11:27pm
Jones, Paton and Kheriaty's articles demonstrate poor science and multiple, egregious instances of bias.
In 2015, Dr David Jones and Prof. David Paton published an article titled “How does legalization of physician-assisted suicide affect rates of suicide?” in the Southern Medical Journal. The article purported to establish suicide contagion from Oregon and Washington Death With Dignity Act (DWDA) deaths to “total suicides.” It also purported to establish no decrease in general suicide rates, which Jones & Paton argued should occur by substitution of assisted death for some general suicides. (Notice how these two ‘expected’ results — an anticipated rise and an anticipated fall in suicide rates — are at odds in principle.)
In my thorough and empirically-backed response, I expose the disgraceful playbook of these authors as they shambolically commit no fewer than ten deadly sins against science in the pursuit of their opposition to lawful assisted dying.
In 2015, Dr David Jones & Prof. David Paton published an article in the Southern Medical Journal titled “How does legalization of physician-assisted suicide affect rates of suicide?” This study examines the article, as well as an enthusiastic editorial of it by Dr Aaron Kheriaty in the same journal issue, both of which portray “suicide contagion” from Oregon and Washington’s death with dignity acts (DWDA).
However, while contagion from general suicides is a well-established phenomenon, there are multiple sound reasons to reject contagion theory in relation to assisted deaths, including:
Most healthcare professionals readily acknowledge key differences in the characteristics of assisted deaths: for example, a fully informed, tested and rational decision with shared decision-making.
Those using Oregon and Washington’s DWDAs are, by qualifying for it, already actively dying. Thus, they are choosing between two ways of dying rather than between living and dying.
Most of those using the DWDA discuss it with their families (expected, peaceful death), whereas most general suicides occur in isolation and without discussion (unexpected, often violent death).
Multiple studies show that while families of general suicide experience complicated bereavement, families of assisted dying cope at least as well as, and in some cases better than, the general population or those who considered but did not pursue assisted death.
Even if “suicide contagion from assisted dying” theory were sound, direct evidence from official government sources shows that the number of potential suicides in Oregon in 2014 would have been fewer than 2 in 855 cases: undetectable by general modelling methods.
Jones & Paton’s article title conveys an air of skilled and scientific neutrality. However, close examination of the article, and Kheriaty’s editorialisation of it, reveals least ten serious flaws or ‘scientific sins.’
The authors demonstrated little understanding of the complex issues surrounding suicide, willingness to unjustifiably equate assisted dying with general suicide, contentment with failing to search for, consider or include contrary evidence including from sources they cite to argue their case, unreasonable trust in a model that couldn’t hope to legitimately resolve their premises, satisfaction with executing their model amateurishly, a disposition to overstate confidence of causation in the absence of meaningful statistical correlations, and an inclination for emphasising results in accordance with their theories while de-emphasising or ignoring others.
Any of these flaws was serious enough to invalidate Jones & Paton’s article and Kheriaty’s conclusions of it, yet there is not one deadly flaw: there are at least ten.
Their claim of a supposed 6.3% suicide contagion rate from assisted dying in Oregon and Washington is a conceptual and mathematical farce.
The Southern Medical Journal is a peer-reviewed journal. However, it is difficult to reconcile the rigorous standards and sound reputation that peer review is intended to maintain, with the numerous, egregious flaws in this study and its dissemination.
Rather than inform the ongoing conversation about lawful assisted dying, the Jones & Paton and Kheriaty articles misinform and inflame it.
Given the numerous egregious flaws, both articles ought to be retracted.
Blog by Neil FrancisPosted on Monday 13th November 2017 at 6:28pm
The deeply-flawed Jones & Paton, and Kheriaty articles purporting to show suicide contagion.
In the ongoing political campaign against assisted dying law reform, opponents have spread one piece of egregious misinformation after another. One of the most common is supposed “suicide contagion” from assisted dying laws to general suicide, a theory popularised by Catholic Prof. Margaret Somerville. Despite the nonsense of her claim being comprehensively exposed, she still believes that her opinion “will prove to be correct.” Two journal papers published in 2015 purported to, but didn't, establish suicide contagion in Oregon and Washington states.
Assisted dying law reform opponents are still relying on a 2015 paper by Catholics David Jones and David Paton, bolstered by a glowing editorial of it written by Catholic psychiatrist Aaron Kheriaty, published in the Southern Medical Journal, as continued ‘proof’ of suicide contagion theory, at least in respect of USA states Oregon and Washington (since data from other lawful jurisdictions contradicts the theory).
Jones & Paton’s article reported the use of econometric modelling to test for ‘suicide contagion’ from Oregon and Washington’s Death With Dignity Act (DWDA) laws. But, in an exposé to be published this week, no fewer than ten ‘deadly sins’ of the study are peeled back to reveal the rot within.
The very deep flaws and biases of the original articles include:
Cherry-picking information from cited sources to argue their case, while omitting information from the same sources that contradicted their case;
Including test and control subjects whose consequence was likely to maximise the likelihood of finding a positive association;
Demonstrating a poor understanding of suicide and its risk and protective factors and failing to control for most confounding effects in their econometric model ‘pudding’;
Overegging the “causative suicide contagion” interpretation when no correlation between assisted dying and general suicide rates was found; and
Failing to use direct, robust and readily-available evidence that showed their study couldn’t possibly have hoped to return scientifically valid “contagion” proof.
The USA’s National Violent Death Reporting System (NVDRS), of which Oregon is a founding member, shows that even if “assisted dying suicide contagion theory” were true, fewer than 2 of 855 Oregon “total suicides” in 2014 could have been attributed to “contagion” from DWDAs.
Further, both Oregon and Washington state rankings for suicide rates have improved, not deteriorated, since their DWDAs came into effect, while the suicide ranking for a relevant control state — Oklahoma — has deteriorated substantially over the same time.
Ultimately, through numerous and deep methodological flaws, the Jones, Paton and Kheriaty articles reveal a bias to promote “assisted dying suicide contagion theory” while ignoring the robust evidence from multiple lawful jurisdictions, including in their own ‘study,’ that contradict it.
The exposé, titled “The ten deadly sins of Jones, Paton and Kheriaty on ‘suicide contagion’,” will be published by DyingForChoice.com later in the week.
Blog by Neil FrancisPosted on Sunday 19th March 2017 at 11:37pm
Oregon (left) and Washington legalised assisted dying by ballot in 1997 and 2008 respectively. Photos: Oregon Department of Transportation; Cacophony.
A scientific study just published in the New England Journal of Medicine reveals that residents of both Oregon and Washington states, which legalised assisted dying in 1997 and 2008 respectively—as well as establishing formal advance directive programs—are far more likely to experience the kind of death they prefer, and with better access to palliative care, than is the average USA resident.1
It's well-established that most westerners would prefer to die peacefully at home rather than in a medicalised or other institutional setting. Yet it is recognised by doctors and families alike that there is a kind of medical ‘conveyer belt’ to acute care at the end of life that tends to shunt the dying individual through to ICU—a place where more and more burdensome medical interventions are administered with less and less likelihood that they’ll actually provide any benefit. These kinds of deaths, with vigorous and invasive procedures performed on a frail person approaching a natural death, can lead to longer and more complex bereavement recovery for surviving loved ones.
It’s also claimed by opponents of assisted dying law reform that assisted dying is a ‘competitor’ of palliative and hospice care, and that legalisation of assisted dying would result in the deterioration or at least stunting of palliative care services.
This latest study, including longitudinal data, provides further evidence that such claims are not only false, but that the legalisation of assisted dying improves the focus on all end of life decision making, whatever those decisions are.
Avoiding burdensome and questionable invasive care
Figure 1: ICU was used in the last 30 days of life Percent of fee-for-service Medicare service beneficiary patients
Figure 1 shows that the ‘shunting’ of dying patients to ICU in the last 30 days of life is significantly lower in Oregon, which legalised assisted dying in 1997. Oregon also established a statutory comprehensive advance care directive (Physician Orders for Life Sustaining Treatment, or “POLST”) program earlier than other states, in 1993. Washington, which piloted a POLST program in 2000 and formally endorsed it in 2005 — and legalised assisted dying by ballot in 2008 — was already trending down from the national average (close to it in 2000), as public discussion of end of life decisions ratcheted up in the lead-up to reform. Since the POLST endorsement and ballot reform, Washington has continued to trend well below the national average.
Facilitating a non-institutionalised death
Figure 2: Patient was discharged from hospital in the last 30 days of life
Figure 2 shows that both Oregon and Washington have continued to trend above the national average for facilitating patient wishes to die at home after a stay in acute care in the last 30 days of life.
Hospice care received at home
Figure 3: Dying patient received hospice care at home
Figure 3 shows that by 2000, Oregon was already providing home hospice services at 2.1 times the national average, but that as the national average plateaued from 2005, the rate in Oregon continued to rise significantly, reaching 2.5 times the national average in 2013. To qualify for an assisted death, Oregon and Washington residents must be certifed by their doctor as expected to die within six months—which qualifies the patient for free hospice care.
Washington was close to the national average on the delivery of home hospice care prior to assisted dying law reform, beginning to deviate as conversations were held about permitting assisted dying and its POLST program was endorsed in 2005, increasing to 1.8 times the national average in 2013.
Death preferred at home
Figure 4: The individual died at home
Figure 4 shows that both Oregon and Washington states continue to facilitate a private home-based death, according to patient and family wishes, at a rate considerably higher than the national average.
Conclusion
The results of this USA study mirror the kinds of findings from Dutch and Belgian research, which I have previously published,2 and another USA report from the Journal of Palliative Medicine which placed both Oregon and Washington amongst the top eight states for palliative care access in hospital settings.3 This study furthers these insights by showing that access to palliative care services in home settings is also significantly higher than the national average in Oregon and Washington.
Assisted dying opponents’ claims that legalising assisted dying would result in a deterioration or stunting of end of life decisions and in particular access to palliative care are contradicted by the data from lawful jurisdictions.
References
Tolle, SW & Teno, JM 2017, 'Lessons from Oregon in embracing complexity in end-of-life care', New England Journal of Medicine, 376(11), pp. 1078-1082.
Morrison, RS, Augustin, R, Souvanna, P & Meier, DE 2011, 'America's care of serious illness: A State-by-State report card on access to palliative care in our nation's hospitals', Journal of Palliative Medicine, 14(10), pp. 1094-1096.
Figure 1: ICU was used in the last 30 days of life
Figure 2: Patient was discharged from hospital in the last 30 days of life
Figure 3: Dying patient received hospice care at home
Figure 4: The individual died at home