Netherlands

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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:

 

What’s the big deal?

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:

  1. 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.
  2. 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.

  1. Belgium: Changed from terminal-only to non-terminal? Nope. (Non-terminal from the outset.)
  2. Luxembourg: Changed from terminal-only to non-terminal? Nope. (Non-terminal from the outset.)
  3. Switzerland: Changed? Nope. (There have been no statutory qualification criteria since 1942.)
  4. 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.
  5. Australia: Any state changed from terminal-only to non-terminal? Nope.
     

Ms van der Linden’s claim is contradicted by so much evidence.

  1. 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.


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Dutch and Belgian VAD rate analysis as at 2016

Through the lens of Covid lock-downs, six years ago seems like an eternity ago, doesn't it? But it was back in 2016 that I published a major analysis of voluntary assisted dying rates and practice in the Benelux lowlands, focusing a bright spotlight on the Netherlands and Belgium.

Using authoritative and robust data, I indicated that the ongoing rise in both countries' VAD rates would level out at rates that were culturally bound. This despite persistent hyperventilations of VAD opponents that most of us would eventually be "knocked off" by not-so-voluntary euthanasia. Generally, the adoption of behaviours at the societal level tends to follow a sigmoidal (stretched S-shaped) curve, and the then VAD data was consistent with this phenomenon.

The above chart is data I presented in 2016, with third order polynomial fits. A few things worth noting:

  1. Both countries' VAD legislation came into effect in 2002.
  2. Their legislation is quite similar, with only small differences.
  3. Belgium provides a microcosm of cultural analysis because the national legislation applies to both the Dutch-predominant north (Flanders) and the French-predominant south (Wallonia).
  4. The Dutch data starts well above zero because it had permitted VAD by regulation (not legislation) for some two decades prior to the legislation.
  5. The late drop in the Dutch trend line is not so much a prediction, but a mathematical curiosity of third order polynomials. I did not predict a drop after leveling off.
  6. The separate data for Flanders and Wallonia is measured by the proxy indicator, language (VAD reports filed in Dutch versus French). This is not perfect, particularly since Brussels, counted by the Belgians as a third official and separate region, speaks mostly French but is situated in Flanders. Nevertheless, it provides a powerful indicator of cultural differences in practice under the same laws.

 
In March last year the Belgian euthanasia commission published its 2020 report card. I re-analysed the data and wrote that the Netherlands' natural VAD rate seemed to be around 4.3%, and Belgium's (nationally) around 2.4%.

In April last year, the Dutch euthanasia commission published its 2020 report card. I analysed the data again and wrote that due to increased total deaths in 2020 due to Covid-19, the seeming drop in the VAD rates was an aberration and the rates would likely be slightly higher for 2021. This proved to be correct.

The very latest data

The other day, the Belgium euthanasia commission published a brief report of the statistics for 2021, and the Dutch euthanasia commission had also published its 2021 report card. So I thought this was an excellent opportunity to update our knowledge about culture and VAD rates.

And here's the same chart as above, updated with all data up to 2021.

nethbelgvadrates2022.gifDutch and Belgian VAD rate analysis as at 2022

The Dutch VAD rate indeed has levelled out at around 4.3%, and the Belgian rate at around 2.4%. The Dutch rate is quite close to the prediction of 2016, while the Belgian rate is actually a bit lower than the 2016 prediction.

And the cultural difference between Dutch and French-speaking Belgians continues, with the Belgian Dutch VAD rate higher and closer to the Netherlands (of course, Dutch) rate. And the French-speaking rate seems not to have quite reached its resting place yet. That might well take another five or more years.

So, here's another general prediction. There will be further rises in the VAD rate, but they will be small, and long-term. This is because a majority of VAD occurs in relation to cancer, and cancer, statistically speaking, makes an appearance in the 50s age bracket, and peaks in the 60s and 70s. And populations in these countries, as around the world, are ageing.

But at no stage was hyperventilation warranted that significant numbers of people would be pressured into VAD, because there was a period of cultural "settling" in regard to both a personal preference for VAD in response to extreme and unrelievable suffering, and accessibility of VAD.


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The Netherlands 2020 assisted dying report card confirms a steady rate

The Netherlands euthanasia commission has just released its 2020 annual report.

The report shows that the number of cases rose around 9% over the 2019 year. However, the number of total deaths was also up, resulting in a continuation of relatively level rate in recent years (Figure 1).

netherlandsbelgium2020.gif
Figure 1: The assisted dying rate in the Netherlands and Belgium

With Covid-19 deaths having contributed towards a modest net increase in total deaths last year, the assisted dying rate is likely to be modestly higher in the coming year.


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Beligum and Oregon released their annual VAD reports this week.

Belgium and the USA state of Oregon both released their annual voluntary assisted dying (VAD) reports this week. I report on the numbers.

While the Netherlands and Washington state haven't released their 2020 annual VAD report cards yet, Belgium and Oregon have.

Belgium

Back in 2016 I wrote a detailed Whitepaper on assisted dying practice in Benelux, including data up to 2015. In it, I pointed out that in several years' time the trend to increasing rates of VAD would level off, like a sigmoidal (stretched-S shape) curve, as does most human adoption of new behaviours.

That time has arrived. The most recent data from both the Netherlands and Belgium shows that in both countries, the VAD rate, as a proportion of all deaths, has generally levelled off (Figure 1).

dutchbeligianvadlong2021.gif Figure 1: VAD deaths as a proportion of all deaths in the Netherlands and Belgium
Sources: Official Euthanasia Commission reports; Government total death statistics

The cultural rate of VAD in the Netherlands appears to be around 4.3% of all deaths, while in Belgium it's around 2.4%. No doubt these figures will vary slightly over coming years, but shrill pronouncements that the rate would continue to rocket higher and higher are refuted by the evidence.

That Belgium's “level” VAD rate is significantly lower than the Netherlands' despite quite similar (though not identical) laws, suggests that VAD rates are influenced more by cultural and other factors beyond the specific provisions of formal statutes and regulations.

Oregon

Meanwhile, in the state of Oregon, the Death With Dignity Act (DWDA) was revised in 2019. Previously, some people suffering intolerably at the very end of life were excluded from using the Act if they died within 15 days of deciding to use the Act. This was due to a fixed, mandatory 15-day cooling off period. Yet in the last weeks and months of life, an individual's condition can take a sudden and dramatic turn for the worse, so that previously the person may have not qualified for other reasons or felt they still had time to apply for access, and now would not qualify the 15 day cooling off period.

The cooling off provisions were updated by Oregon's legislature in 2019 to allow access without the cooling off period, in cases where the person is, in professional medical opinion — and with a formal declaration to the effect — reasonably likely to die before the 15 days had elapsed.

The revision was in effect for the entire 2020 calendar year.

As a consequence, some people felt they didn't need to apply quite so early “just in case” they might want to use the law, while others who would have been excluded altogether were able to use the law. This accounts for a slight dip in the “old” provisions rate, along with a rise in the total proportion of DWDA deaths (Figure 2).

oregondwdalong2021.gifFigure 2: Oregon DWDA deaths as a proportion of all deaths, new-rule data in light blue
Source: Oregon DWDA annual reports; Government total death statistics

Oregon's overall rate of VAD remains much lower than in the Netherlands and Belgium, whose laws are not restricted to cases of terminal illness.

However, in no case has any parliament legislated to limit cases to a numbered cap. In all jurisdictions, legislation focuses on the conditions under which a person may become eligible to access VAD choice, regardless of the actual numbers requesting and qualifying for access.


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Home of the bible society in Launceston, from where the ACL's latest media release was launched

"Bullshit!"

That was the reaction of Dutch Senator Erik Jurgens when I asked him about a Dutch euthanasia anecdote spread by Mr Paul Russell, then head of the Australian anti-VAD Catholic front organisation "HOPE". In 2011, Mr Russell had been spreading the story:

"I often use the story of the death of a 26 year old ballerina in Holland [sic]. She had contracted a form of arthritis at this young age and her dancing career and dreams were dashed. An American oncologist who spoke later to the killing doctor reported the Dutch medico as saying something like 'One doesn't like doing it, but it was her choice.'" — Paul Russell, "HOPE" [my emphasis]

(Note: "Holland" comprises just the two north-west provinces of the Netherlands. "Holland" and "the Netherlands" are not correctly substitutable terms. The Dutch euthansia Act applies to the whole of the Netherlands, not to just two provinces.)

Checking with authoritative sources

In 2012, I travelled across the Netherlands with camera in tow, interviewing key stakeholders in the nation's assisted dying law about its operation. Nobody had heard of the supposed ballerina case, including long-serving politicians, the Royal Dutch Medical Association, nor even Professor Theo Boer or the Dutch Patient Rights Association who actively oppose the law.

robinbernhoffoncamera.jpgUSA doctor Dr Robin Bernhoft muses about a Dutch ballerina nobody in the Netherlands has heard of

It turns out that the meme was a bit of unverified nonsense put about by USA Catholic radio- and televangelist Dr Robin Bernhoft in an early 1990s polemic anti-VAD video, "False Light", narrated by staunch Catholic actor Joseph Campanella. Dr Bernhoft has castigated believers in evolution as "sexually immoral, abortion supporters, racists and violators of each of the Commandments".

In the video, Dr Bernhoft often gazes nonchalantly into the distance, or at his hands, as he narrates his stories. It's all very third-hand and mysterious, conspicuously devoid of even the faintest whiff of evidence. But Dr Bernhoft doesn't claim to have actually spoken to the doctor, as Mr Russell states. Perhaps the confidently stated direct-contact idea is a signal of confirmation bias.

Those little Dutch cards

Confidence was also common amongst VAD opponents, like Oregon Nurse Donna Howell also featured in "False Light", spreading the nonsense that the Dutch wander around carrying little cards pleading for protection from being killed.

"It's gotten so bad in Holland [sic] that people have in their wallets little cards that say 'Do not euthanise me without my permission'." — Nurse Donna Howell

donnahowelloncamera.jpgUSA Nurse Donna Howell confidently says the Dutch carry little cards saying 'do not euthanise me'

Just like the supposed ballerina, nobody I interviewed across the Netherlands, including the anti-VAD Patient Rights Association which would be the natural source of "little cards" for patients, had ever heard of the little cards, either.
 

Update 13-Oct-2020

A colleague reminds me of an event that's important and very revealing in this context. On 23rd February 2012, the President of the Royal Dutch Medical Association (KNMG) wrote to the President of the American Medical Association in response to "inadequacies" in Republican Presidential candidate Rick Santorum's statements about assisted dying practice and its supposed consequences in the Netherlands.

Mr Santorum, amongst other things, claimed that the Dutch wear bracelets saying "do not euthanise me". Notice how there can be random small, yet conspicuous, mutations in misinformational anecdotes.

The KNMG was unequivocal in its professional advice: "'Do not euthanise me' bracelets do not exist." The KNMG President closed with the observation that:

"Interpretations about the practice of euthanasia in other countries should not be biased by personal opinions whether or not euthanasia is justificed in situations of unbearable suffering without prospect of improvement."

The architect of the Dutch euthanasia law, Dr Els Borst, arguably the most informed stakeholder of the era, responded to the "little cards" claim in plainer language:

"That is an absolute lie." — Els Borst

A diet of evidence-less anecdotes

Anecdotes — devoid of verifiable evidence — about supposed dangers are a favourite diet of VAD opponents, like the nonsense put about by the Vatican, and Catholic Professor Margaret Somerville, that Dutch elderly are streaming into Germany for hospital treatment for fear of being euthanised in the Netherlands; that Els Borst supposedly regretted her law reform; or that there's some kind of slippery slope from VAD to non-voluntary euthanasia — which Rick Santorum handily mutated into involuntary euthanasia.

The anecdote is a favourite snack of opponents for dishing out when they've run out of other confectionery.

Back to now

One's being served up again in Tasmania right now, and it smacks of desperation. In its most recent media release, the Australian Christian Lobby, from the home of the Bible Society in St John Street, Launceston, launched its latest shrill warning with the claim that:

"In a conversation with a member of the British Parliament, one Dutch doctor explained what it was like when euthanasia laws first came to the Netherlands. He said, 'We agonised over our first case of euthanasia all day, but the second case was much easier and the third was a piece of cake.'"

So let's reflect: on some unspecified date ("when euthanasia laws first came to the Netherlands": but that would be the mid 1980s) some unnamed British MP once said that an unnamed Dutch doctor once told him or her… that their third euthanasia case "was a piece of cake".

Who what now?

One only has to glance at readily-available records to see what a load of, um, how shall we put this?... bollocks, the claim is. The Australian Christian Lobby is not referring to a recent, documented, verfied fragment of evidence. Rather, the ACL has jauntily appropriated a statement from May 1998, by Lord McColl of Dulwich in the British parliament. Straight from the Hansard's mouth:

"The Dutch doctors told us: 'We agonised over our first case of euthanasia all day, but the second case was much easier and the third was a piece of cake.'" — Lord McColl

"Dutch doctors": plural. However, the statement is not of the kind that would be said by a broad collective of doctors as Lord McColl story relates.

Indeed, in 2006 his Hansard story mutated to "when a Dutch doctor was asked...". Suddenly from multiple doctors to just one; from direct, personal receipt of the claim, to the claim being made to an unspecified audience, stated in the tell-tale passive voice. If it were really said to you and you wanted to punch home a key point in a spirited on-the-record debate, you wouldn't forget, and you'd make a point that it was said to you, wouldn't you?

Piling up the anecdotes

What else has Lord McColl had to say about the Holland [sic] experience on the Hansard record in 2006? Ah, the "little cards" anecdote, still doing the rounds more than a decade after its invention:

"Many elderly people in Holland [sic] are so fearful of euthanasia that they carry cards around with them saying that they do not want it." — Lord McColl

An anecdotal claim without at least one independent, verifiable source isn't really evidence at all. It's just a myth. A handy but hollow sound bite. It reveals little about the subject... but rather a more about the claimant.

The "piece of cake" anecdote, like those before and since, are just myths conjured up to curry fear, uncertainty and doubt. Piling them up doesn't make them any more true.

Conclusion

As I put one anecdotal claim after another to each of my interviewees across the Netherlands, including VAD opponents, they'd roll their eyes and give courteous replies to the effect that, as one interviewee generously put it, "nobody in the Netherlands takes such commentary seriously."

But I think I prefer Senator Erik Jurgens' parsimony: Bullshit.

And if history is any guide it won't be long before the next re-moistened cowpat is heaved at the political reform fan in the hope that some of it sticks.


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There's a good reason why assisted dying opponents don't mention Switzerland. [Photo by Andrew Bossi]

Supposed Dutch suicide contagion from assisted dying

Recently, Dr Theo Boer, an Assistant Professor at a "black-stocking" (strongly conservative Protestant) theological college in the Netherlands, was at it again — criticising the Dutch euthanasia law to anyone who would listen: "don't follow the Dutch euthanasia law path because it leads to 'suicide contagion'".

I've exposed Prof. Boer's cherry-picked nonsense before. Astonishingly, he even ignores data from the Dutch Euthanasia Commission, despite the fact he used to serve on one of its five Regional Review Committees.

What he doesn't mention is that amongst the five Regions, the Region with by far the highest rate of assisted deaths had the second-lowest rate of general suicide, and the Region with the lowest assisted death rate had by far the highest general suicide rate (Figure 1) in 2014,1 the year Boer left his Committee and began bad-mouthing the Dutch law. Quite the opposite of "suicide contagion".

dutchvadandsuiciderates.gifFigure 1: Dutch assisted death and general suicide rates by region, 2014

From multiple safeguards to just one

The Dutch euthanasia Act has a number of safeguards that stipulate who may qualify to access assisted dying in the Netherlands, and how qualification is assessed, implemented and reported to the authorities.

But there's another country that permits assisted dying with just one provision: Switzerland.

In effect since 1942, an exception in the Criminal Code permits assisted suicide, provided assistance is rendered for non-selfish motives. That's it. There's no legislated (or even government-regulated) requirements for age, illness or condition, decisional capacity, cooling off periods, or anything else.

In the 1980s, two assisted dying associations were formed to make assisted dying generally possible: Exit Deutsche Schweiz for German-speaking Swiss residents, and Exit A.D.M.D. for French-speaking residents.

Since then, several other smaller associations have been formed, including in 1998 Dignitas, which provides assistance to foreigners. (The main societies assist only Swiss residents.) The current membership of the societies, combined, is well in excess of 150,000 people, in a population of just 8.5 million. Assisted dying is often discussed openly in the media.

If "contagion" anywhere, in Switzerland, right?

Given that Switzerland has an abundance of the ingredients that religious opponents of assisted dying claim lead to "suicide contagion", you'd think they'd be shouting about Swiss "suicide contagion" from the rooftops.

But they don't mention Switzerland.

There's a powerful reason why: the data is not only unhelpful to their "contagion" theory, but actively hostile to it.

Latest official government data

I've written about Switzerland before, but, given the ongoing "suicide contagion" misinformation, I thought an update warranted. On request, my contact in the Swiss Federal Statistical Office (FSO) promptly re-supplied all publicly-available statistics of assisted deaths and general suicides, with the data now running up to 2017.

It makes for interesting reading. Figure 2 shows Switzerland's (CH) long-term general (non-assisted) suicide rate, along with the domestic (Swiss resident) and Dignitas (foreigner) assisted death rates. All the official (Australian Bureau of Statistics) longitudinal data I could find for Australia's (AU) general suicide rate is also included.

swissdeathratesto2017.gifFigure 2: Swiss death rates 1969–2017; Australian suicide rates 1990–2017

Immediately obvious is that the Swiss general suicide rate has dropped massively and consistently since the two main assistance societies were formed in the early 1980s. And it's continued to drop even as the rate of assistance, and public discussion, has increased over the most recent three decades.

I also asked the FSO how many cases on record were of minors (persons under the age of majority or 18 years). The answer? None. I double-checked. Zero. Zip. No minors receiving assisted dying in Switzerland. Indeed, cases under the age of 35 years old are uncommon.

Consistent with best practice

Indeed, the data is consistent with suicide prevention. The societies help people get the medical care they need and consider assisted death only when other avenues have failed to provide acceptable relief. Every assisted death is reported as such by the association to the authorities — otherwise the unexpected death would result in a coronial inquiry.

Each association has clearly-defined processes and oversight by ethics specialists. Clients requesting access are assessed carefully by doctors. (In fact, the lethal medication can only be lawfully obtained by medical prescription.) The associations take their responsibilities very seriously.

The data is also consistent with substitution: that what would have been some violent and lonely suicides as a result of unrelievable suffering from intractable conditions, are now peaceful assisted deaths.

And for the record, despite the Swiss law being in effect since 1942 versus Dutch regulation from only 1984; and Swiss law having only one provision versus Dutch regulation/legislation with many; in 2017 the Swiss assisted dying rate, including Dignitas cases, as a percent of all deaths, was less than half that of the Netherlands' rate.

Reasons for requesting an assisted death

Exit Deutsche Schweiz, by far the largest of the Swiss associations, has published statistics of its cases (Figure 3).

exitdsreasons2015.gifFigure 3: Reasons for pursuing assisted dying, Exit Deutsch Schweiz 2015

In 2015, like other jurisdictions, cancer was by far the most common reason (40.8%) for requesting an assisted death. Polymorbidities (22.4%) was next, followed by refractory pain at 8.6%, lung diseases at 5.0% and Parkinsons at 4.3%.

Despite no government-regulated access requirements, assistance for mental illness was very low at 1.7% (Dutch 1.2% in 2015) and cases of dementia at 1.4% (Dutch 2.0%; Belgian combined mental/dementia 3.1% in 2015).

And compared to Australia?

In the 1990s, the Swiss general suicide rate, although falling, was significantly higher than Australia's (Figure 2) until 2010, when the rates were the same. Since 2010, the Swiss suicide rate (with no legislated procedures for its permitted assisted dying) has continued to drop, while Australia's (at that time with no assisted dying law at all), began to rise.

This difference highlights the clear anchoring bias exhibited by religious opponents who cherry-pick their data to try and claim the rise in the Dutch general suicide rate must be the result of "suicide contagion" from assisted dying, when Australia's rate also increased over the same time period, but in the complete absence of an assisted dying law. (Victoria's assisted dying legislation didn't come into effect until mid-2019.)

Further, the Swiss rate has continued to drop even with a significant increase in assisted dying.

Conclusion

Of course, general suicide is a serious issue. It has numerous well-known risk factors (e.g. mental health, substance abuse, unemployment, relationship breakdown, opportunity) and protective factors (e.g. hotlines, funding mental health programs, unemployment benefits, removing opportunity), none of which assisted dying opponents mention while cherry-picking their statistics.

Meanwhile, as legislators contemplate the specific safeguards contained in Bills before their legislatures, it's important to strike an appropriate balance between sufficient safeguards, and inappropriately requiring those considering an assisted death to climb Mount Everest with one hand tied behind their backs.

Switzerland shows that even in a jurisdiction without legislated practices, access to assisted dying is modest, with assistance groups establishing their own stringent ethical and procedural standards.

And it amply demonstrates even under those conditions, an absence of supposed "suicide contagion".

-----

1 Official Euthanasia Commission data and official Dutch government suicide statistics by region.


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World-first report of VAD use amongst minors is now available for download.

Differences of opinion continue to be expressed regarding law reform to permit voluntary assisted dying (VAD) for minors: persons under the age of legal majority or adulthood, which in most jurisdictions is 18 years. Some claims are florid and ill-informed. To date, no cohesive report has been published regarding the actual use of VAD by minors in jurisdictions where it is lawful. This research aims to address that shortfall.

This study examines official evidence from lawful jurisdictions regarding the extent and nature of VAD amongst minors. Its aim is to facilitate calmer public discourse and more fully inform legislators considering VAD law reform proposals.

Findings

  • VAD is currently a lawful choice for minors in the Netherlands, Belgium, Switzerland and Colombia.
  • Dutch and Belgian legislation, and Colombian regulations, stipulate additional requirements regarding minors.
  • Available Dutch and Belgian data reveal very low rates of use, between zero and three cases per annum, with parental involvement in decision making.
  • There are no cases of VAD amongst minors on record in Switzerland.
  • No official case data is available from Colombia. However, given the extremely low rate of VAD use overall, cases amongst minors are highly unlikely.
  • While use of VAD laws by minors is rare, a review of case records reveals — as for adults — severe refractory underlying illness with extreme, unrelievable suffering.

 

Conclusions

Use of VAD by minors in lawful jurisdictions is rare, but nevertheless occurs with parental involvement in decision making, and otherwise as for adults: in cases of severe, refractory underlying illness with extreme, unrelievable suffering.

 

Download the full report PDF (270k)

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An article in 'Anasthesia' did NOT find high rates of regaining consciousness in contemporary VAD practice.

A recent article by Sinmyee et al, "Legal and ethical implications of defining an optimum means of achieving unconsciousness in assisted dying", published in the journal Anasthesia1 was an attempt to identify a professional standard for inducing and maintaining unconsciousness prior to voluntary assisted dying (VAD) death, a laudable aim.

However, the authors’ underlying premise of contemporary VAD practice failing to reliably maintain unconsciousness — potentially leading to 'inhumane deaths' — is not established by their cited sources. They cite exactly three sources to establish their claim: their citations 31, 32 and 33.

Citation 31 — Iserson et al 1992

This is a qualitative article by Ken Iserson and colleagues.2 Published in 1992, it outlines a single case of assisted suicide, forming the backdrop for several Californian ethics committees to comment.

Not only was this a single case rather tha a sample of dozens or hundreds of cases, but assisted dying was illegal right across the USA in 1992 and earlier. Therefore, the article is wholly uninformative to contemporary practice under assisted dying laws.

Citation 32 — Groenewoud et al 2000

This is a study by Johanna Groenewoud and colleagues.3 Published in 2000, it analyses Dutch data collected between 1990 to 1996 — long before the Netherlands’ 2001 euthanasia Act, which came into effect in 2002.

In 1997 the Dutch medical association (KNMG) formed the Support and Consultation on Euthanasia in Amsterdam (SCEA) network to assist doctors implement the practice more reliably. The successful program was made national (…in the Netherlands, SCEN) in 1999, with a four-year implementation resulting in strong consultation and positive outcomes.4

In addition, the KNMG and Dutch pharmacy association (KNMP) have improved their guidelines for euthanasia practice since 1996: in 1998, 2007 and most recently in 2012.5 Independent studies show that use of opioids (inappropriate method) was high in the Netherlands in 1995-96,6 but replaced entirely with (appropriate) barbiturates and neuromuscular relaxants in reported VAD cases in 2010.7

The most recent published report of the Dutch Euthanasia Commission, which assesses every reported case of VAD, did not note any failures of the VAD procedures.8

Citation 33 — Lalmohamed & Horikx 2010

This is a study by Arief Lalmohamed and Annamieke Horikx, published in 2010, of doctor responses to a survey the KNMP conducted between 2007 and 2009.9 The study reported on issues with the storage, preparation and administration of VAD drugs. It noted that the recommended dose of Thiopental was increased from 1500mg to 2000mg so that patient-dependent dosages need not be calculated.

The study noted one negative experience for some patients: pain on injection of Thiopental. Recommendations were made for preparation and administration of the drug to avoid this problem. No other negative patient outcomes were reported.

The upshot

Thus, of the three sources the authors employed to make the case of a significant and systematic problem in the conduct of contemporary VAD cases, none did so: the first was a single case outside the law in the early 1990s, the second a study from the early to mid 1990s from whence contemporary practice has greatly improved, and the third a 2010 pharmacological investigation that found some patients experiencing pain on injection and recommending improvements to avoid it. Nevertheless, Sinmyee et al concluded that:

“For all these forms of assisted dying, there appears to be a relatively high incidence of vomiting (up to 10%), prolongation of death (up to 7 days), and reawakening from coma (up to 4%), constituting failure of unconsciousness.”

These assertions are highly misleading in regard to contemporary VAD practice.

The most recent Oregon Death With Dignity Act annual report, covering all cases from 1997 to early 2019 reports that just eight of 1,467 deaths where lethal medication was consumed, resulted in the patient regaining consciousness.10 That’s an efficacy rate of 99.5%, a high standard for a medical procedure.

There have been no cases of regaining consciousness in Washington state under their Death With Dignity Act.11

In comparison, regaining consciousness under professional surgical anaesthesia is a problem12 with an incidence rate of around 0.13% in the USA13 though the rate appears to be much lower in the UK.14 Even over-the-counter analgesics like paracetamol, ibuprofen and aspirin have significant adverse effects rates of 14.5%, 13.7% and 18.7% (respectively).15

From unsubstantiated to polemical

While Sinmyee and colleagues were attempting, via their article in Anasthesia, to argue the case for improved VAD practice, it was inevitable that ginger groups opposing the legalisation of VAD would commandeer cherry-picked extracts from the article to further their cause, painting a picture of disaster and mayhem.

Sure enough, the Catholic-backed Euthanasia Prevention Coalition’s Alex Schadenberg ran with it, cherry picking the “190 times higher” rate the authors claim for “failure of unconsciousness” using their invalid citations. Schadenberg conspiratorially concluded that “the laws are designed to cover-up [sic] problems with the law”.16

Also, predictably, Catholic-backed HOPE’s Branka van der Linden followed suit, plucking quotes like “…failure rates of assisted dying by these other methods seems extraordinarily high” without similar context.17

It’s disappointing that the original article with its misleading statistics based on figures plucked from a single historical article and in the absence of considering significant intervening improvements, passed peer review. Its misinformation led to more nonsense being energetically pedalled by anti-VAD campaigners.

 

References

  1. Sinmyee, S, Pandit, VJ, Pascual, JM, Dahan, A, Heidegger, T, Kreienbühl, G, Lubarsky, DA & Pandit, JJ 2019, 'Legal and ethical implications of defining an optimum means of achieving unconsciousness in assisted dying', Anaesthesia, 74(5), pp. 630-637.
  2. Iserson, KV, Rasinski Gregory, D, Christensen, K & Ofstein, MR 1992, 'Willful death and painful decisions: A failed assisted suicide', Cambridge Quarterly of Healthcare Ethics, 1(2), pp. 147-158.
  3. Groenewoud, JH, van der Heide, A, Onwuteaka-Philipsen, B, Willems, DL, van der Maas, PJ & van der Wal, G 2000, 'Clinical problems with the performance of euthanasia and physician-assisted suicide in the Netherlands', New England Journal of Medicine, 342(8), pp. 551-556.
  4. Jansen-Van Der Weide, MC, Onwuteaka-Philipsen, BD & Van Der Wal, G 2004, 'Implementation of the project 'Support and Consultation on Euthanasia in the Netherlands' (SCEN)', Health Policy, 69(3), pp. 365-373.
  5. KNMG/KNMP 2012, Guidelines for the practice of euthanasia and physician-assisted suicide, Utrecht, pp. 56.
  6. van der Maas, PJ, van der Wal, G, Haverkate, I, de Graaff, CL, Kester, JG, Onwuteaka-Philipsen, BD, van der Heide, A, Bosma, JM & Willems, DL 1996, 'Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990-1995', N Engl J Med, 335(22), pp. 1699-705.
  7. Onwuteaka-Philipsen, BD, Brinkman-Stoppelenburg, A, Penning, C, de Jong-Krul, GJF, van Delden, JJM & van der Heide, A 2012, 'Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey', The Lancet, 380(9845), pp. 908-915.
  8. Regional Euthanasia Review Committees (Netherlands) 2018, Annual report 2017, Arnhem, pp. 66.
  9. Lalmohamed, A & Horikx, A 2010, '[Experience with euthanasia since 2007: Analysis of problems with execution] Ervaringen met euthanastica sinds 2007: Onderzoek naar problemen in de uitvoering', Ned Tijdschr Geneeskd, 154(A1983), pp. 1-6.
  10. Oregon Health Authority 2019, Oregon Death With Dignity Act: 2018 data summary, Department of Human Services, Portland, pp. 16.
  11. Washington State Department of Health 2018, Washington State Department of Health 2017 Death with Dignity Act Report, Olympia, WA, pp. 15.
  12. Cook, TM, Andrade, J, Bogod, DG, Hitchman, JM, Jonker, WR, Lucas, N, Mackay, JH, Nimmo, AF, O'Connor, K, O'Sullivan, EP, Paul, RG, Palmer, JH, Plaat, F, Radcliffe, JJ, Sury, MR, Torevell, HE, Wang, M, Hainsworth, J, Pandit, JJ, Royal College of, A, the Association of Anaesthetists of Great, B & Ireland 2014, 'The 5th National Audit Project (NAP5) on accidental awareness during general anaesthesia: patient experiences, human factors, sedation, consent and medicolegal issues', Anaesthesia, 69(10), pp. 1102-16.
  13. Sebel, PS, Bowdle, TA, Ghoneim, MM, Rampil, IJ, Padilla, RE, Gan, TJ & Domino, KB 2004, 'The incidence of awareness during anesthesia: A multicenter United States study', Anesthesia & Analgesia, 99(3), pp. 833-839.
  14. Thomas, G & Cook, TM 2016, 'The United Kingdom National Audit Projects: a narrative review', Southern African Journal of Anaesthesia and Analgesia, 22(2), pp. 38-45.
  15. Moore, N, Ganse, EV, Parc, J-ML, Wall, R, Schneid, H, Farhan, M, Verrière, F & Pelen, F 1999, 'The PAIN Study: Paracetamol, Aspirin and Ibuprofen new tolerability study', Clinical Drug Investigation, 18(2), pp. 89-98.
  16. Schadenberg, A 2019, Assisted dying can cause inhumane deaths, Euthanasia Prevention Coalition, viewed 25 Feb 2019, http://alexschadenberg.blogspot.com/2019/02/assisted-dying-can-cause-inhumane-deaths.html.
  17. van der Linden, B 2019, The "myth" of a pain-free euthanasia death, HOPE, viewed 22 Mar 2019, https://www.noeuthanasia.org.au/the_myth_of_a_pain_free_euthanasia_death.
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'HOPE' is pedalling assisted dying misinformation to politicians again.

The Catholic-backed anti-assisted-dying ginger group, HOPE, was represented for years by Paul Russell. He's retired and Branka van der Linden is now at the helm. But its penchant for pedaling egregious misinformation hasn't changed. Van der Linden recently sent an email to all WA members of parliament, containing three points.

Van der Linden's email reads:

 

Dear [MP salutation],

Did you know that the WA majority report that recommended assisted suicide for WA either dismissed or failed to report on the following statistics?

  • In the Netherlands in 2015, 431 people were euthanised without their explicit consent.
  • In Belgium, 8 per cent of all deaths were without explicit consent from the patient.
  • In Oregon in 2017, the ingestion status of 44 (out of 218) patients was ‘unknown’, making it impossible to ascertain if these 44 patients ended their lives voluntarily and without coercion.

Yours faithfully,

Branka van der Linden

Director, HOPE

 

The trouble is, all three claims by van der Linden are either directly false or egregiously misleading. Here are the actual facts:

FACT: Peer-reviewed scientific research shows that the non-voluntary euthanasia rate of both the Netherlands and Belgium has dropped significantly since their assisted dying Acts came into effect in 2002, consistent with more careful end-of-life decision making across the board.

Fiction 1: van der Linden improperly cherry-picked a single year’s statistic for each country (and, incoherently, a raw count for one but a percentage for the other), implying that lawful voluntary euthanasia increases non-voluntary euthanasia, when the opposite is true.

Fiction 2: van der Linden claimed Belgium’s non-voluntary euthanasia rate is 8%. It has never been anywhere near that figure: the most recent figure is 1.7% and it was 3.2% before Belgium’s euthanasia law.

FACT: Oregon’s health department actively matches death certificates with prescriptions issued for assisted dying. At any time some prescriptions have not been taken and the person may still be alive, and for the deceased, death certificates are still being processed. This naturally means that some prescription/death statuses will temporarily be ‘unknown’ to authorities, even though they will be later determined.

Fiction 3: van der Linden comically implies that this proper process is sinister.

It's curious how 'HOPE' likes to repeatedly demonstrate how HOPElessly uninformed it is about the actual facts and that its methods include cherry-picking data which it thinks supports its anti-assisted dying case, but which don't.

Western Australians deserve better than HOPE's silly propaganda campaign.


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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.

Gosh. What a coincidence.


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