Blog by Neil FrancisPosted on Tuesday 24th September 2024 at 11:54pm
The Dutch LZA-LP has just published its latest annual report.
Nearily two decades ago...
It seems like such a long time.
The Groningen Protocol
Back in 2005, the Dutch Paediatric Association (NVK) ratified what is known as the Groningen Protocol. It was adopted into the nation's regulations in 2006. It allows for the termination of a neonate's life in very particular circumstances, via strict processes, and reported to the regulating authority, the LZA-LP.
Only the most grave, extremis circumstances are eligible, for example Herlitz type epidermolysis bullosa, an untreatable condition that causes extreme internal and external blistering, and then death.
Then in 2013, the Dutch medical association (KNMG) released a medical media statement saying that each year, some 650 of 175,000 Dutch neonates will die not long after birth.
VAD opponents become enraged
Opponents of voluntary assisted dying (VAD) immediately became enraged, joining dots that didn't exist.
"After a decade of legalized assisted dying in the Netherlands, it is estimated that as many as 1 in 3 deaths in the country are from euthanasia [itself false] – including 650 babies each year." — Anti-VAD correspondent
The flood of false associations continued at least until 2016. It was then that I conducted a scholarly, forensic and exhaustive investigation into the Groningen Protocol, its history and its use, as well as documenting the trail of religious institutions running the "650 babies" association story up the media flagpole. I published a paper on it.
What's happened since then?
For appropriate reference, in the nine years immediately preceding the Protocol, there were 22 cases of neonatal euthanasia in the Netherlands.
That's not per year. It's the total over nine years. An average of a bit over two a year. Not 650.
And since regulation?
The LZA-LP has just released its 2022-23 report on neonatal euthanasia cases, so we're now up to date. And the figures are:
That is, in 9 years prior to the Groningen Protocol there were 22 cases, while in twice the period after its introduction (18 years), there were 3.
The findings show that shining a light on practice helps improve it. And that VAD, whose numbers have increased in the Netherlands, is not associated with a concomitant rise (but rather a major drop) in the small number of neonatal euthanasia cases.
I've yet to see any of the sources who spread "650 babies euthanised every year" misinformation publish a correction or refer to the LZA-LP annual reports. I wouldn't hold my breath, either.
More of the same
The "650 babies" caper is still doing the rounds.
Take Lord Alton of Liverpool for example. Last year he gave an address to a Catholic Social Thought forum, in which, after invoking Nazi Germany, he said:
"For those who would contend that infant euthanasia in the Netherlands is only permitted for rare and exceptional, cases, a Dutch commission on euthanasia argued in 2013 that as many as 650 infants should be eligible for the practice in the country each year." — Lord Aston of Liverpool
Actually, it was the Dutch medical association, not the Dutch euthanasia commission. It was 650 babies die, not "should be eligible for euthanasia". And the already small numbers have radically dropped, not risen.
But let's not let the facts get in the way of a good story.
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 Friday 18th September 2020 at 4:47am
Deep and extensive Catholic connections are behind supposedly secular attacks on VAD.
A friend pointed out to me an opinion piece published this week in MercatorNet that slams Victoria's voluntary assisted dying (VAD) law. Written about an elderly woman with cancer who used the law to die peacefully, it's an angry diatribe written by the woman’s granddaughter-in-law: one Mrs Madeleine Dugdale.
Update 21-Sep-2020
Mrs Madeleine Dugdale's article has been withdrawn from MercatorNet without explanation. Here's a screenshot of the original.
And this is Mrs Dougdale's "about" page after the article was withdrawn.
While it's far from my preferred practice to take on someone recently bereaved, Mrs Dugdale has put herself and her family firmly in the public square by publishing an editorial about her grandmother's death (actually her husband’s gran) the very day after she died.
All is not as it seems and a response is required.
Catholic talking points
Let's not beat about the bush: Mrs Dugdale's piece is a grotesque misrepresentation of Victoria's VAD law and relies on gallingly distorted framing. Despite not mentioning faith, religion or Catholicism, her opinion piece ticks most Catholic talking-point boxes I've pointed out previously, such as Mrs Dugdale’s:
Headlining that her gran was not in particular pain. We already know from extensive overseas experience that pain is a less common reason behind why people consider VAD.
Being sure to emphasise the death was a suicide, and that "suicide is not courageous, it's an horrendous act of desperation and defeat".
Linking it to loneliness caused by Covid-19 lockdown.
Shabbily inferring that doctors did not discuss and offer all and anything palliative care could bring to bear, when there's a consultation process mandated by law.
Suggesting that palliative care could alleviate all intolerable suffering, but which both palliative care peak bodies in Australia concede is not possible.
Scandalously implying that medical care workers were forced to participate in her assisted death against their will, when the law protects anyone who wishes to decline.
Suggesting her gran's choice was an issue of mental health, implying that she wasn't fit to decide, when in fact doctors must confirm decisional capacity.
Describing the process as "obfuscation and secrecy" when a strong chain of documentary evidence is mandated, while no process is mandated for the Catholic church's own accepted patient path to foreseeable death: refusal of life-saving medical treatment.
Mrs Dugdale employs no fewer than eight Catholic church talking points in her attack on Victoria's VAD law.
Spurned "help"
Also of note is Mrs Dugdale's description that she and her husband were "silenced" and "quickly shut down" so there was "little my husband and I could do to help." Did the family actually want help of the kind Mrs Dugdale and her husband were determined to dispense?
One wonders what Mrs Dugdale's gran would think if she could see how a granddaughter-in-law had sought to weaponise her choice for VAD, against the law itself.
Update 24-Sep-2020
We now know what gran's immediate family thought of Madelein Dugdale's savage misrepresentation of their mum's death. It's not pretty, and they've asked Madeleine for a written apology. Read the full story at Go Gentle Australia.
Who is Madelaine Dugdale?
So who is Mrs Madelaine Dugdale? Her article bio reports only that she's a former Melbourne high school teacher and now a full-time mum of four with one on the way. Move along, nothing to see here…
Well, it’s worth looking a bit more carefully, elsewhere. Mrs Dugdale graduated from (Catholic) Campion College. And that high school where she worked? St Kevin’s (Catholic) College in Toorak, Melbourne, where she taught… religion.
She's a leading member of Catholic Voices Australia, whose purpose is "putting the Church's case in the public square."
So in summary, this anti-VAD diatribe bristling with Catholic church misinformation was penned by a leading member of Catholic Voices Australia whose remit is "putting the Church's case in the public square", but which failed to identify that religious connection and attempted to give the appearance of secular impartiality.
If there's any remaining doubt about Mrs Dugdale's Catholic devotion, here she is discussing the Pope's amoris laetetia (the joy of love) book with Fr Tony Kerin, an Episcopal Vicar for Life, Marriage and Family in Melbourne.
Mrs Dugdale's anti-VAD tirade is published online by the masthead MercatorNet. It declares itself to be "dignitarian", and reveals that its Editor is a Catholic who believes in God. The masthead is named after Gerardus Mercator, the C16th cradle Catholic cartographer.
MercatorNet's About webpage opines that "religion adds clarity and conviction to the task of defending human dignity" — as if that's an exclusive province or even necessary feature of "religion" — and insists that arguments it publishes are "based on universally accepted moral principles, common sense and evidence, not faith."
Pfft.
Another invitation to "dig here"
Methinks they doth protest too much. It doesn't take much effort to peel back the veneer of neutrality.
MercatorNet is a trading name of the company New Media Foundation Ltd. (For reference, another of its trading names is BioEdge, which has the same Editor as MercatorNet, but we'll get to that later.) It's a company limited by guarantee; a registered charity established in 2005 and based in NSW.
Oddly, its 2019 ACNC records claim 2 full-time and 10 casual employees for a full-time equivalent (FTE) of 5. However, their total payroll expenditure as lodged, "Editor fees", was less than $38k. But If FTE is 5, then that's an average of just $7,600 per full-time annum. A minimum wage of $16/h over a year, without holiday leave, would equate to around $27k per person, times 5 would make a total minimum lawful payroll budget of $135k per annum. Hmmm.
Other major expenses were website maintenance and hosting ($26k), paying contributors ($18k), and insurance ($4k).
The company's bare-bones website mysteriously states only that its mission is "to help people navigate modern complexities in a way that respects the fullness of human dignity."
Of its masthead MercatorNet, the company’s website says only that the outlet is "dignitarian" and "doesn't want to be trapped on one or the other side of the culture wars". Of its BioEdge masthead it says that it's "completely independent".
Double pfft.
Who controls the company?
According to ASIC's records, the four registered Directors of New Media Foundation Ltd are Romano and Francine Pirola, Jude Hennessy and Michael Cook. Romano Pirola is the Chairperson, yet it is Michael Cook and Jude Hennessy who signed off the company's latest financial statements. Who are these people?
Romano Pirola and his wife Mavis were Joint Chairs of the Australian Catholic Marriage and Family Council, which advises the Australian Catholic Bishops Conference. They were appointed by the Pope in 2014 as one of just 14 married couples worldwide to participate in the Extraordinary Synod of Bishops on the Family. They've been awarded the church's honour of Knight and Dame of the order of St Gregory for services to the Church, and in 2016 were awarded honorary doctorates by Australian Catholic University.
Francine Pirola is the wife of Byron Pirola, Romano and Mavis Pirola's son. Francine and Byron were awarded honours by Pope Francis in 2019, are directors of the Catholic Marriage Resource Centre (which, incidentally, acknowledges that Catholic wedding numbers have been falling for 25 years) and were joint Chairs (like Byron's parents before them) of the Australian Catholic Marriage and Family Council. They've even represented the Australian Catholic Bishops at meetings of the Pontifical Council of the Family.
They're also the couple whose investment company loaned anti-marriage-equality lobby group Marriage Alliance $1.67m in support of anti-LGBTI flyers handed out to children on school buses. The Crikey exposé makes further interesting reading.
Jude Hennesy is director of the Confraternity of Christian Doctrine for the Catholic Diocese of Wollongong. It's responsible for "special religious education" in state schools.
Michael Cook is Editor of both MercatorNet and BioEdge. He's been a member of the devout lay Catholic group, Opus Dei for more than four decades. Unlike MercatorNet's About page, BioEdge's own About page doesn't mention religious links of any kind, and says it's "completely independent".
All four directors of MercatorNet's controlling company are very deeply and strongly invested in the Catholic church. One of them, Michael Cook, is its Editor.
MercatorNet's remit
Back in October 2016 I did a keyword breakdown of articles published by MercatorNet. In the then 11 years of its existence, assuming no articles were taken down, it had published more than 2,000 articles containing the word "Catholic". That's a lot for a small outlet: an average of 3.5 "Catholic" articles a week, every week, for 11 years.
In comparison, there were no articles containing the word "Anglican", and just 51 containing the expression "Church of England". There were also 121 mentioning "Hindu", and 868 mentioning "Islam", with many of those negative.
New Media Foundation Ltd's ACNC record indicates its qualifying charitable purpose is "advancing education". But publishing thousands of articles mentioning religion, most of them Catholic, would seem to more fully reflect the qualifying charitable purpose of "advancing religion". But they chose "advancing education" instead — which bypasses any mention of religion.
Tellingly, every visit to and search on the MercatorNet website currently results in a pop-up that invites you to join their "influential community of truth-tellers" to "push back against post-modern relativism". That "relativism" is a pet peeve (and language) of the Catholic church.
MercatorNet attacks post-modern relativism: a pet peeve of the Catholic church, to be countered by "truth-tellers".
MercatorNet headlines the Catholic church's pet peeve: post-modern relativism. This is hardly surprising given its controlling company is run by Opus Dei members, Catholic church staff, and church honours recipients.
The founding of New Media Foundation Ltd
When it was founded in 2005, New Media Foundation Ltd's registered address was 296 Drummond Street, Carlton, Victoria. Significant? Decide for yourself.
That's the address of the Drummond Study Centre. And its connection? "Spiritual activities in the centre are entrusted to Opus Dei, a personal prelature of the Catholic Church." Notice how the centre's name doesn't mention "Catholic" or even religion in any way, either. You have to delve through its web pages to find out.
Previous directors
Similarly, the list of former New Media Foundation Ltd company directors adds to its storyline.
One is Mr Richard Vella, who is or was the spokesperson for Opus Dei in Australia. He describes his personal relationship with God as "the greatest love of my life". Another is Fr Phillip Elias, who was ordained into Opus Dei in Rome in 2017.
Another founding director was Fr Amin Abboud, who died in 2013 and was given a full requiem mass funeral at St Mary's Cathedral in Sydney, presided over by church officials including Monsignor Victor Martinez, the then Regional Vicar of Opus Dei for Australia and New Zealand.
Yet another is Carolyn Moynihan, Deputy Editor of MercatorNet and frequent contributor to Crisis Magazine, "a voice for faithful Catholic laity" and a contributor to the Catholic Exchange. She rails repeatedly against the harms of marriage equality.
Get the picture?
New Media Foundation Ltd and its masthead MercatorNet's Catholic underpinnings are deep and strong.
The roots of the garden
But if you think it might simply be a small bunch of enthusiastic individuals, think again. This veritable garden of fertile Catholic plants arose from somewhere.
Where might that be? I've already pointed out seeding strategies for non-clerical commentary promoted by the Catholic Archbishop of Sydney, Anthony Fisher. It's also worth pointing out that, like any other major institution that seeks to influence public policy, the Catholic church in Australia maintains a whole media and communications department.
Further, the Australian Catholic Media Council hosted the triennial Australian Catholic Communications Congress in 2018, which notably for the first time ever was held together with the Australasian Catholic Press Association (ACPA) Conference. ACPA's brief is to "give voice to Catholic perspectives on the issues of our societies". Former Vatican journalist Greg Erlandson delivered the keynote address to the joint conference, and masterclasses were held to "hone particular skills".
Not a recent phenomenon
If you think this just a recent phenomenon you'd be mistaken. Back issues of the Vatican's own newspaper, L'Osservatore Romano, prove most enlightening.
At least as far back as the eighties, through the nineties and the noughties, the Vatican has been vigorous in its promotion of media engagement across Europe, Asia/Pacific and the Americas. For example, in March 1990 Pope John Paul II noted "unprecedented opportunities" to proclaim the word of God via media channels in central and eastern Europe.
In the same year, Archbishop John Foley, then President of the Pontifical Council for Social Communications, told media workers at a Catholic world congress not to "falsely" compartmentalise their lives into private piety versus professional work subjected to commercial pressure, but instead spread Catholic "truth". He also schooled filmmakers amongst the gathering that "great films are 'at least implicitly religious'".
The Vatican and its 'authorities' repeatedly cajole Catholics into "truth-telling", which means evangelising the church's stances.
Ongoing evangelisation focus
Pope John Paul II repeated his firm wish for more mass media coverage in a major address in 1992, and a follow-on note in the same year encouraged USA Catholic journalists to "put their professional skills at the service of the Gospel".
The Catholic church believes the mass media needs a Catholic presence.
In another example in 1993 Pope John Paul II emphasised how new media — then videotapes and audiocassettes — could serve the "new evangelisation". And in 2002, he again implored Catholics to adopt the latest new media — the Internet — in "proclaiming the Gospel". Two years later MercatorNet was launched online, as were other similar sites.
And if there was any doubt as to what Catholic communications services were for, in October 2012, Pope Benedict XVI delivered a major address confirming that "the church exists to evangelise".
That's just a few of the many.
Media for the faithful
Back in Australia, B. A. Santamaria established the AD2000 journal in the late 1980s. It's an obviously Catholic publication published by the Thomas Moore Centre in Melbourne. A quality journal aimed squarely at and informative to Catholic adherents, it is of limited interest to the general public. What reaches the general public is mainstream media.
But "Houston, we have a problem"...
Mainstream media a "problem"
In a revealing narrative, loyal Catholic Professor Margaret Somerville, now at the (Catholic) University of Notre Dame Australia, laid out the critical importance of the media to the outcome of VAD law reform in her 2001 book Death Talk: The case against euthanasia and physician-assisted suicide (especially see Chapter 19).
In it, she highlights the Catholic communications problem (without mentioning Catholicism), railing against what she claimed even then was the mostly "small-l liberal" mainstream media as resistant to religious messages. She confirmed that religious media are much more accommodating of the "pro-life" world view.
She specifically noted the importance of "framing" the issues to "significantly influence political decisions", complaining that "anti-euthanasia arguments do not make dramatic and compelling television". She then went on to outline a collection of useful anti-VAD "frames", which were wholly consistent with the Vatican's position and language.
Indeed, you'd be forgiven for thinking Professor Somerville wrote the church's framings, because she's given pre-eminent billing over the Vatican itself in the Catholic Archdiocese of Perth's website for bioethics, the LJ Goody Bioethics Centre. Of further relevance is that the Catholic Archbishop of Perth is, along with the Catholic Archbishop of Sydney, the ultimate authority controlling the University of Notre Dame Australia, where Somerville is a Professor.
(Incidentally, the website's home page "What's new" announcement is more than 5½ years out of date, which gives the impression that the Centre was a hasty, event-specific confection whose purpose has long since passed.)
Professor Margaret Somerville gets pre-eminent billing on Catholic bioethics, above the Vatican itself.
Don't mention the war religion
Amongst Professor Somerville's numerous writings slamming VAD, some stand out more than others. One that does is a 2008 editorial titled Death talk in a secular age, in which she vigorously encourages religious opponents to "formulate a moral argument against euthanasia without resorting to religion" [my emphasis]. And who published this editorial? Why, it was MercatorNet!
Did the Catholic church take note of Professor Somerville's strategy? As I've pointed out before, Mr Ben Smith, Director of the Life, Marriage and Family Office at the Catholic Archdiocese of Hobart, fails to mention who he really is in at least two purportedly "independent" groups fulminating against Tasmania's current VAD Bill. One of the groups he leads, Live & Die Well, encourages people to write objections to their parliamentarians, but expressly commands "DO NOT use religious arguments."
Professor Somerville was also a keynote speaker at a 2008 conference of media professionals in Toronto, in which she advised journalists and editors how to "frame" the debate against VAD. But these were not just any journalists and editors at large. They were Catholic journalists and editors: members of the Association of Roman Catholic Communicators of Canada, whom she schooled alongside a number of Catholic church officials. The conference's title? "Proclaim it from the rooftops!"
Catholic Professor Margaret Somerville has been central to the Catholic church's hostile "framing" of VAD, and helping media specialists spread that framing through the media.
More religious frustrations
Over the years Professor Somerville continued to build upon the theme, including in her 2015 book, Bird on an Ethics Wire: Battles about values in the culture wars. She escalated her criticism of the "intense tolerance" of "the now ubiquitous moral relativism" as an illustration of how VAD law reform demonstrates what happens "if we take a purely secular approach not balanced by religious views."
A curated garden
You will have noticed by now significant common threads in favour of Catholic "truth"; against "relativism"; calls to evangelise using the media; calls to avoid and actual avoidance of religion in argumentation; avoidance of revealing religious connections in by-lines; and a united portfolio of Church-friendly framings of VAD by a busy theatre of players.
Given the church's perceptions of a hostile mainstream media, is it any wonder that some devout Catholic contributors, and deeply Catholic media outlets, hide their religious petticoats and zucchetti while publishing grave misinformation in the curry of fear, uncertainty and doubt (FUD) against VAD?
This isn't a random jungle.
No, it's a curated garden, tended to by what we might call the 'Catholic communicators guild'.
Failure to mention deep Catholic roots behind purported "secular" attacks on VAD law reform is a strategy of the 'Catholic communicators guild'.
Conclusion
In this review, I've revealed only some of the deep Catholic connections that resulted in a shocking appropriation of the death of an elderly woman with cancer, using misinformation and framing wholly consistent with the Catholic church's evangelisation, but withholding key information about those deep religious underpinnings.
It's clear the Catholic church understands that its religious arguments are unpersuasive to the wider community. It's also important that the public and legislators understand how religious forces attempt to sow fear, uncertainty and doubt about VAD law reform by giving the appearance of secular neutrality to its messages.
Mrs Dugdale’s gran deserved better than to be appropriated for the aggrandisement of an agenda that is clearly at odds with her own beliefs and values… and the values of the overwhelming majority of Australians.
Blog by Neil FrancisPosted on Friday 21st June 2019 at 10:00pm
The Catholic Church's video which blatantlly misrepresents Belgium
The Catholic Archdiocese of Sydney has released a video which blatantly misrepresents scholarly research about non-voluntary euthanasia practices in Belgium. The lead author of the peer-reviewed research has slammed the video as "cherry-picked", "scaremongering" and "appalling". His full statement about the video appears below.
Back in 1998, non-voluntary euthanasia — or NVE — was carefully studied by Belgian scholars. It’s a problematic practice, even though often the medication doctors administered didn’t actually hasten death. They found it occured in 3.2% of all deaths.
In 2002, the Belgium parliament legalised voluntary assisted dying — or VAD.
In 2007, the Belgian scholars repeated their study and found that NVE had dropped by nearly HALF, to 1.8% of all deaths. Again in 2013, it was found to remain at a lower level, 1.7% (Figure 1).
Figure 1: Belgium's NVE rate has dropped dramatically since VAD was legalised
Thus, the State shining a bright light on end-of-life practices, including VAD, has resulted in improvements.
NVE has also been found to occur in every jurisdiction that’s been studied, VAD law or not, including Australia and New Zealand (Figure 2).
Figure 2: NVE has been found in every jurisdiction that's been studied
But the Catholic church would have you believe otherwise.
In a recent video, the Catholic Archdiocese of Sydney grotesquely misrepresented a single statistic from the Belgian studies. Using cold colours and the sound of a flatlining heartbeat, the Catholic video claims Belgium’s VAD law has caused its NVE. It’s a chilling confection of innuendo that thumbs its nose at the facts.
The Belgian study the church relies on expressly points out the significant NVE drop, so it’s not like they wouldn’t know.
Figure 3: The study expressly points out the significant drop
It's no wonder that lead scholar of the Belgian research, Assistant Professor Kenneth Chambaere, called the Church’s video “cherry-picked", “a blatant misrepresentation”, “scaremongering” and “appalling”. Professor Chambaere's full response appears below.
Despite the unambiguous evidence, multiple Catholic lobbyists have used cherry-picked NVE rates in a similar way, like:
I’ve directly corrected their misleading claims before. Yet here we go again with the same unconscionable nonsense.
Interestingly, at a 2011 Catholic conference, Archbishop Anthony Fisher said:
“the man or woman in the street … may well be open to persuasion that permissive laws … cannot be effectively narrowed to such practices”
and
“we need to research and propose new messages”
Note that the Archbishop proposed... new messages. In his address he didn't propose to examine if his assumed calamities were valid or not.
The Church is entitled to opinions, but promoting misinformation doesn’t seem to be very Christian. The Church should withdraw its grotesque propaganda and apologise.
In conclusion, repeating fake news doesn’t make it true. The fact remains that Belgium’s NVE practice was considerably higher before it legalised VAD, and dropped significantly after.
Prof. Kenneth Chambaere's response in full
On viewing the Catholic Archdiocese of Sydney's video on Belgian NVE, which cites Prof. Chambaere's 2007 study, Prof. Chambaere made the following statement:
13th July 2019
Recently, a Vimeo video of the Archdiocese of Sydney on 'Debate on Euthanasia Laws' was brought to my attention: https://vimeo.com/339920133.
As lead author of the cited research, I was appalled at the video's blatant misrepresentation of the robust and honest research that we have been conducting in Belgium. It is quite frankly an insult to us as researchers who day in day out work to generate reliable and trustworthy insights into end-of-life practice in Belgium.
It is clear to me that the video has cherry-picked results from our studies to the effect of scaremongering among the public. As researchers, we fully grasp the emotional, ethical and societal gravity of the euthanasia practice and therefore also euthanasia research, and we never take it lightly. We believe we are always as objective and impartial as possible, as is to be expected of independent and free research. This only adds to my duty as a scientist to respond to the video in question and correct its mistakes. The general public and politicians must have access to reliable and correct evidence.
First of all, the figures shown in the video do not concern euthanasia practices at all. Euthanasia is by definition always at the explicit request of the patient. What the figures do refer to are physician acts to hasten a dying patient's death without their explicit request, a separate type of end-of-life practice altogether (see further).
Secondly, yes, this problematic practice does exist in Belgium. But so does it exist in every other country where anyone has had the audacity to conduct research into it, euthanasia law or no euthanasia law.
Thirdly, the incidence of such practices has halved since the euthanasia law was enacted in Belgium.
Conclusion: acts of hastening death without explicit request are not a by-product of euthanasia legislation, and if anything, euthanasia legislation seems to decrease the occurrence of these practices. This conclusion features prominently in the paper cited in the video.
This practice even exist in Australia, and in significant numbers, according to one (potentially outdated) study. While this study was not identical to ours in Belgium, it still provides clear evidence of its occurrence in Australian end-of-life practice. The authors of the video ask whether Victoria will become like Belgium? If it means diminishing rates of these questionable practices, then surely becoming more like Belgium is a good thing!
Lastly, a 2014 detailed analysis in CMAJ Open clarified much about what these cases of hastening death without explicit request entail. I quote our conclusion here: "Most of the cases we studied did not fit the label of "nonvoluntary life-ending" for at least one of the following reasons: the drugs were administered with a focus on symptom control; a hastened death was highly unlikely; or the act was taken in accordance with the patient's previously expressed wishes. Thus, we recommend a more nuanced view of life-ending acts without explicit patient request in the debate on physician-assisted dying."
This is not to condone or excuse physicians who engage in such practices, but it is important to know and be clear about what we are focusing our societal discussions on.
The question then is, why did the authors of the video overlook these clear conclusions during their extensive review of the evidence? It is very difficult to see how our research could be misrepresented in the way it has been in the video. The research is very clear and it does not support the claims made in the video. I urge anyone relying on the large body of peer-reviewed evidence to analyse it carefully, and if necessary consult with the authors, before communicating to the general public.
Assistant Professor Kenneth Chambaere
End of Life Care Research Group
Vrije Universiteit Brussel
Belgium
The Catholic Archdiocese of Sydney has released a grotesque and appalling video that blatantly misrepresents Belgium's non-voluntary euthanasia practices as being 'caused' by their voluntary assisted dying law. They're not.
“Belgian scholars have researched the country's non-voluntary euthanasia rate (or NVE) over a number of years.
Their findings unambiguously show that Belgium's NVE rate was much higher BEFORE it legalised voluntary assisted dying (or VAD), and dropped significantly afterwards.
Yet the Catholic Archdiocese of Sydney has released a grotesque video which cherry-picks just the 2007 figure to claim that Belgium's VAD law has caused its NVE practices.
But the NVE drop is no secret: it's expressly stated in the very research the Church cites.
It's no wonder that lead researcher, Assistant Professor Kenneth Chambaere, called the Church’s video “cherry-picked", “a blatant misrepresentation”, “scaremongering” and “appalling”.
The video casts serious doubts over the Church's competence in assessing scholarly evidence, and calls into question its desire to avoid misinformation.
To conclude, Belgium's NVE rate dropped dramatically, and has remained lower, after it legalised voluntary assisted dying.”
Blog by Neil FrancisPosted on Wednesday 10th April 2019 at 8:39pm
Branka van der Linden on the "HOPE" website.
HOPE’s Director, Branka van der Linden, is at it again, foisting more misleading information about voluntary assisted dying (VAD) on unwilling members of Parliament. I expose the rot and provide some background on Mrs van der Linden.
Van der Linden’s latest email to all WA MPs states:
Subject: WA Report relies on troubling Belgian study
[MP Salutation] --
Did you know that a study showing that one person in Belgium is euthanised every three days without their explicit consent also found that:
in more than 77 per cent of cases, the decision was not discussed with the patient;
in more than half of cases, the patient had never expressed a desire for their life to be ended; and
in more than half of the cases, the reason given was because killing the patient was the wish of the family?
Did you know that the WA majority report cited this study as evidence of assisted suicide and euthanasia reducing the incidence of unlawful activity?
Warm regards,
Branka van der Linden
Director, HOPE
Van der Linden’s method is to create an impression of calumny against VAD law reform. She uses a nice PR formula of three bullet points per communication. With repetition. It’s a method I expressly warned the WA Parliament to watch out for in my submission to its inquiry. The growing list of emails is now starting to look like ‘harassment’.
So let’s look at van der Linden’s claims — again. She’s talking about non-voluntary euthanasia (NVE) — again.
In her email to MPs, she complains that the WA majority report on end-of-life choices cited the study as evidence of the NVE rate reducing when VAD is legalised.
Well, the WA majority report formed that correct conclusion because that’s precisely what the cited study reported: drops in the NVE rates in both the Netherlands and Belgium after their euthanasia Acts came into effect in 2002.
While concerns ought to be expressed about the deliberate hastening of death without an explicit request from the patient with a view to improving knowledge and practices, it’s not caused by VAD laws as van der Linden desperately tries to imply.
Here are highly relevant things the cited study’s authors had to say, but van der Linden astonishingly ignores:
“The use of life-ending drugs without explicit patient request are not confined to countries where physician-assisted death is legal.”; and
“[NVE’s] occurrence has not risen since the legalisation of euthanasia in Belgium. On the contrary, the rate dropped from 3.2% in 1998 to 1.8% in 2007. In the Netherlands, the rate dropped slightly after legalization, from 0.7% to 0.4%” [The Belgian rate was 1.7% in a more recent replication of the research.]; and
The NVE cases found in the study “in reality resembles more intensified pain alleviation with a ‘double effect’, and death in many cases was not hastened.”
But let’s not let the facts get in the way of a good story. Van der Linden’s recent emails about VAD to MPs reveal astonishing ignorance and a willingness to overlook critical evidence contrary to her position, contained in the very source she cites.
The superficiality of her cherry-picking is kind of embarrassing: she holds an arts/law degree from Australian National University, so you’d expect more intelligent engagement.
It begs the question: who is Branka van der Linden? The “HOPE” website reveals little if anything.
Who is Branka van der Linden?
Branka Van der Linden is the current Director of anti-VAD website “HOPE (Preventing euthanasia and assisted suicide)”. HOPE is an initiative of the Australian Family Association, a Catholic lobby group established by Australia’s most famous lay Catholic, B. A. Santamaria.
HOPE’s founding Director and van der Linden’s predecessor, was Mr Paul Russell, the former Senior Officer for Family and Life at the Catholic Archdiocese of Adelaide.
It turns out that Branka van der Linden (née Seselja) is a sister of Catholic ACT Senator Zed Seselja who voted against David Leyonhjelm's recent Restoring Territory Rights (to legislate on VAD) Bill. But there’s more. Far more.
Branka, who attended Catholic St Clair’s College primary school and Padua Catholic High School, both in the ACT, is a “senior lawyer” at the Truth Justice and Healing Council, which provides services to the Australian Catholic Bishop’s Conference and Catholic Religious Australia in relation to the Catholic Church’s response to the Royal Commission into Institutional Responses to Child Sexual Abuse.
She’s advisory legal counsel for the lay Catholic St Vincent de Paul Society Canberra/Goulburn Territory Council. (And good on her for supporting this philanthropic work.)
She and her husband Shawn represent (or at least represented) the Australian Catholic Marriage and Family Council, and were representatives of the Catholic Archdiocese of Canberra & Goulburn on the National Family Pilgrimage to the (Catholic) World Meeting of Families in Philadelphia in 2015.
Husband Shawn has been described by the church as a “loyal Catholic servant” for nine years of service as the director of CatholicLIFE at the Catholic Archdiocese of Canberra and Goulburn.
And as if this weren’t clear enough, a sample of Branka’s Facebook Likes is equally informative:
A sample of Branka van der Linden’s Facebook Likes
Archbishop Anthony Fisher (Catholic)
Archbishop Samuel J. Aquila (Catholic)
Archbishop Mark Coleridge (Catholic)
Bishop Robert Barron (Catholic)
Marist College Canberra Faith Formation (Catholic)
St Thomas the Apostle Kambah (Catholic)
Campion College (Catholic)
Teaching Catholic Kids
Ascension (Catholic Church)
CathFamily
St Therese of Lixieux (Catholic)
Dominican Sisters of Saint Cecilia in Australia (Catholic)
Fusion Youth Group (Catholic)
St Clare’s College (Catholic)
Marist Canberra Football Club (Catholic)
Light To The Nations (Catholic)
Catholic Voices USA
Centre for Faith Enrichment (Catholic)
World Meeting of Families 2015 (Catholic)
Quidenham Carmelite Monastery (Catholic)
Denver Catholic
Catholic Mission – Canberra & Goulburn
XT3 (Catholic youth association)
Missionaries of God’s Love Darwin (Catholic)
Marist College Canberra (Catholic)
Life, Marriage & Family Office (Catholic)
Infant Jesus Parish, Morley (Catholic)
MGL Priests and Brothers (Catholic)
Catholic Mission – Sydney, Broken Bay, Parramatta
Youth Mission Team Australia (Catholic)
Summer School of Evangelisation – Bathurst (Catholic)
Missionaries of God’s Live Sisters (Catholic)
Sisterhood National Catholic Women’s Movement
My Family My Faith (Catholic)
Catholic Talk
The Catholic Weekly
The Catholic Leader
Mercatornet (Catholic blog site)
BioEdge (Catholic blog site)
It’s clear that Branka van der Linden, like her predecessor Paul Russell, is very deeply invested in Catholic tradition. I will be the first to say I firmly believe that is entirely her right.
Yet how curious it is that while repeatedly advancing (secular) misinformation about VAD, Branka van der Linden doesn’t mention her profound religious convictions. It's surprisingly similar to the approach evidenced by Catholic Professor of Ethics, Margaret Somerville; and Catholic (then) Victorian MP Daniel Mulino; and Catholic Editor of The Australian, Paul Kelly (who warmly quotes Mulino); and Catholic director of the Euthanasia Prevention Coalition, Alex Schadenberg...
You get the idea: perhaps there's a pattern?
One possible source of pattern
What was it that the Catholic Archbishop of Sydney, Anthony Fisher, said at the 2011 Catholic Bioethics Conference in relation to opposing the legalisation of VAD?
"The most effective messengers may also vary: bishops, for instance, are not always the best public spokespeople for the Church on such matters."; and
"...the man or woman in the street ... may well be open to persuasion that permissive laws and practices cannot be effectively narrowed to such circumstances"; and
"We need to research and propose new messages also and carefully consider who should deliver them, where and how."
Nowhere in his address does Fisher propose actually testing whether his calamitous assumptions about VAD are true.
Gosh, another coincidence.
Epilogue
I want to be absolutely clear that I am not using a person’s religious conviction as a reason to dismiss their ideas. That’s called an ad hominem attack: an attack against the person rather than the substance of the argument (even assuming it has any substance to assess).
What I have done here and elsewhere, and I will continue to do, is to expose arguments that are false, misleading, illogical or otherwise unmeritorious on the basis of empirical evidence and reasoning.
It just turns out that organised misinformation against VAD law reform comes from deeply religious circles, and those religious circles often avoid mentioning their religiosity while spreading such nonsense under a ‘veneer of secularism’.
It’s in the public’s interest to understand where most organised misinformation against VAD comes from.
The F filesPosted on Tuesday 9th April 2019 at 7:15am
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
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.
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.
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.
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.
KNMG/KNMP 2012, Guidelines for the practice of euthanasia and physician-assisted suicide, Utrecht, pp. 56.
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.
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.
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.
Oregon Health Authority 2019, Oregon Death With Dignity Act: 2018 data summary, Department of Human Services, Portland, pp. 16.
Washington State Department of Health 2018, Washington State Department of Health 2017 Death with Dignity Act Report, Olympia, WA, pp. 15.
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.
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.
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.
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.
Fact file by Neil FrancisPosted on Monday 8th April 2019 at 2:47am
Terminal sedation is not an argument against assisted dying law reform.
Opponents of assisted dying often claim that the appropriate response to refractory symptoms at end of life is terminal sedation — also known as palliative sedation or continuous deep sedation.e.g. 1 Terminal sedation is the administration of sedatives so as to render the patient unconscious until death. Thus, the patient’s active experience of suffering is removed, even if the underlying causes of the suffering are not.
Terminal sedation can help in some cases of end-of-life suffering, but it remains a problematic practice — and not a substitute for lawful assisted dying — for eight broad reasons.
1. Directly and foreseeably causing death
Unless the patient is already likely to die of her illness within a few days, it is the withholding of artificial nutrition and hydration during terminal sedation that causes the patient’s death. Lack of fluids causes circulatory collapse and organ failure within 14 days; less if the patient is frail.
In addition, at least one study has found that the terminal sedation medication itself can cause depression of respiration and/or circulation, directly resulting in death in 3.9% of cases.2 Another study purporting to show no survival difference in patients given terminal sedation3 has been exposed as deeply scientifically flawed.4
While opponents of assisted dying usually claim that the intention of terminal sedation is the relief of symptoms and not the hastening of death (their fundamental objection to assisted dying), in practice, terminal sedation can directly and foreseeably cause death.
2. Inapplicable prior to 2–14 days before death
A standard of practice in terminal sedation in many jurisdictions is that it should be used to address refractory symptoms only if the patient’s death is anticipated within hours or days, and in any case less than 14 days.5
However, intolerable and intractable symptoms often occur much earlier, for example amongst those with metastatic cancer where death is still weeks off, or those with a progressive degenerative neurological condition such as motor neuron disease, who may have several months to live.
Thus, terminal sedation is not a practical solution to intractable symptoms in many cases.
3. It doesn’t always help
Palliative Care Australia’s acknowledgement that even best practice can’t always alleviate intolerable suffering at end of life6 is confirmed by a study into terminal sedation practice which found that, in contrast to popular belief that it alleviates (the patients’ conscious awareness of) all suffering, it was ineffective in 17% of cases.7
4. It may violate the patient’s value system
Most calls for terminal sedation as “the answer” to assisted dying law reform focus on the views of the doctor, for whom this is another familiar “intervention”. However, terminal sedation may be unacceptable to the patient.
A patient may deeply believe that being forced to dehydrate to death — unconscious in a bed for a couple of weeks — to be an anathema to her most deeply-held values and sense of self as an active participant in her own life trajectory. This patient may profoundly prefer another route whose equally caused and foreseeable consequence is death: voluntary assisted dying, an option that gives her the chance to say goodbye to loved ones at a time of her own choosing.
5. It extinguishes the patient’s decisional capacity
Rendering the patient unconscious extinguishes her decision-making capacity. The patient can no longer participate in her own treatment decisions unless terminal sedation is ceased, she regains consciousness and becomes aware of her intolerable suffering once more.
6. Doctors’ intention not always clear-cut
When a doctor administers terminal sedation to a patient, the doctor’s intention is not always clear-cut. The doctor may intend to alleviate the patient’s suffering and/or intend to hasten death.
The administration of a single large bolus of sedatives is generally indicative of an intention to hasten death, in which case the doctor in likely to be investigated and prosecuted. However, the administration of increasing doses of sedatives is less clear: significantly increasing titrations of sedatives may be necessary to alleviate intractable symptoms, or they may be an intention to hasten death.
7. Risk of coercion
There is a conceptual risk that greedy relatives, service providers who need the patient’s bed, and others, might inappropriately persuade the patient to opt for a death hastened by terminal sedation, a similar theoretical risk to that in assisted dying.
However, unlike assisted dying which under statutory law is an express, fully informed, independently examined and documented desire and intention to hasten death, there are no statutory requirements in Australia regarding testing of desire, informedness, intention or possible coercion in terminal sedation. This is incoherent.
8. Worse experiences for the bereaved
Studies have found a significant minority of relatives of patients receiving terminal sedation are quite distressed by the experience. Problems causing distress include concern about the patient’s welfare and terminal sedation’s failure to address symptoms, burden of responsibility for making the decision, feeling unprepared for changes in the patient’s condition, short time to the patient’s death and whether terminal sedation had contributed to it, feeling that healthcare workers were insufficiently compassionate, and wondering if another approach would have been better.e.g.8,9 Periods of longer terminal sedation may be more distressing than shorter periods.10
In contrast, an Oregon study found that the bereaved from assisted deaths appreciate the opportunity to say goodbye, to know that the choice was the deceased’s wish, that the deceased avoided prolonged suffering, that the choice was legal, and they were able to plan and prepare for the death.11
Another Oregon study found that the mental health outcomes of bereaved from assisted deaths were no different from the bereaved from natural deaths.12 Bereaved from assisted deaths were more likely to believe that the dying person’s wishes had been honoured and were less likely to have regrets about the death.
A Swiss study found the rate of complicated grief after assisted death was comparable to the general Swiss population,13[^] while a Dutch study found bereavement coping in cancer was better after assisted death than after non-assisted death.14
Incoherent professional association standards
Neither the Australian Medical Association nor Palliative Care Australia have guidelines for doctors for the practice of terminal sedation.[*] Indeed, even Palliative Care Australia’s carefully reviewed and updated national standards released in late 2018 don’t mention sedation at all.15
In contrast, in countries where assisted dying is now lawful, clear and specific frameworks have been developed to guide the practice of terminal sedation: in the Netherlands,16 Canada,17 and Belgium.18 This deliberative development and implementation points to continued improvement in (not deterioration of) professional medical practice across the board when assisted dying is legal.
Given the profound issues in terminal sedation as in voluntary assisted dying, the failure of the peak Australian medical associations to publish guidelines on terminal sedation, while opposing assisted dying for perceived issues in its implementation, is incoherent and indefensible.
Summary
Palliative and medical care can never address all profound suffering at the end of life, regardless of funding or organisation: some kinds of suffering have no relevant or effective medical interventions, and even terminal sedation may be inapplicable or ineffective. To claim that palliative care is always the answer is a “monstrous arrogance”19 and “represents the last vestiges of [medical] paternalism”.20
"It is clear that improving palliative care will not remove the need for legalizing assisted dying, and that legalizing assisted dying need not harm palliative care.”21
While terminal (palliative) sedation may help a minority of patients, it's a problematic practice that is often not a practical solution to refractory symptoms at end of life.
Terminal sedation is not a substitute for lawful assisted dying choice.
[^] Slightly elevated levels of PTSD were found amongst the bereaved (compared to the general population), but it was not established whether this would have been different from the trauma of experiencing continued suffering and deterioration or different from PTSD rates of those who had recently lost a loved one by any other means, including terminal sedation.
[*] Revealed through direct correspondence between myself and the two associations.
References
Somerville, M 2009, 'We can always relieve pain', Ottawa Citizen, (24 Jul).
Morita, T, Chinone, Y, Ikenaga, M, Miyoshi, M, Nakaho, T, Nishitateno, K, Sakonji, M, Shima, Y, Suenaga, K, Takigawa, C, Kohara, H, Tani, K, Kawamura, Y, Matsubara, T, Watanabe, A, Yagi, Y, Sasaki, T, Higuchi, A, Kimura, H, Abo, H, Ozawa, T, Kizawa, Y, Uchitomi, Y, Japan Pain, PMR & Psycho-Oncology Study, G 2005, 'Efficacy and safety of palliative sedation therapy: a multicenter, prospective, observational study conducted on specialized palliative care units in Japan', J Pain Symptom Manage, 30(4), pp. 320-8.
Maltoni, M, Pittureri, C, Scarpi, E, Piccinini, L, Martini, F, Turci, P, Montanari, L, Nanni, O & Amadori, D 2009, 'Palliative sedation therapy does not hasten death: results from a prospective multicenter study', Ann Oncol, 20(7), pp. 1163-9.
Twycross, R 2019, 'Reflections on palliative sedation', Palliative care, 12, pp. 1-16.
Palliative Care Australia 2006, Policy statement on voluntary euthanasia, Canberra, pp. 2.
Davis, MP 2009, 'Does palliative sedation always relieve symptoms?', Journal of Palliative Medicine, 12(10), pp. 875-877.
Morita, T, Ikenaga, M, Adachi, I, Narabayashi, I, Kizawa, Y, Honke, Y, Kohara, H, Mukaiyama, T, Akechi, T & Uchitomi, Y 2004, 'Family experience with palliative sedation therapy for terminally ill cancer patients', Journal of Pain and Symptom Management, 28(6), pp. 557-565.
Bruinsma, SM, Brown, J, van der Heide, A, Deliens, L, Anquinet, L, Payne, SA, Seymour, JE, Rietjens, JAC & on behalf of, U 2014, 'Making sense of continuous sedation in end-of-life care for cancer patients: an interview study with bereaved relatives in three European countries', Supportive Care in Cancer, 22(12), pp. 3243-3252.
van Dooren, S, van Veluw, HT, van Zuylen, L, Rietjens, JA, Passchier, J & van der Rijt, CC 2009, 'Exploration of concerns of relatives during continuous palliative sedation of their family members with cancer', J Pain Symptom Manage, 38(3), pp. 452-459.
Srinivasan, EG 2009, Bereavement experiences following a death under Oregon's Death With Dignity Act, Human Development and Family Studies, Oregon State University, pp. 127.
Ganzini, L, Goy, ER, Dobscha, SK & Prigerson, H 2009, 'Mental health outcomes of family members of Oregonians who request physician aid in dying', J Pain Symptom Manage, 38(6), pp. 807-15.
Wagner, B, Müller, J & Maercker, A 2012, 'Death by request in Switzerland: Posttraumatic stress disorder and complicated grief after witnessing assisted suicide', European Psychiatry, 27(7), pp. 542-546.
Swarte, NB, van der Lee, ML, van der Bom, JG, van den Bout, J & Heintz, AP 2003, 'Effects of euthanasia on the bereaved family and friends: a cross sectional study', British Medical Journal, 327(7408), pp. 189-192.
Palliative Care Australia 2018, National Palliative Care Standards, Griffith ACT, pp. 44.
Verkerk, M, van Wijlick, E, Legemaate, J & de Graeff, A 2007, 'A national guideline for palliative sedation in the Netherlands', J Pain Symptom Manage, 34(6), pp. 666-70.
Dean, MM, Cellarius, V, Henry, B, Oneschuk, D & Librach, LS 2012, 'Framework for continuous palliative sedation therapy in Canada', J Palliat Med, 15(8), pp. 870-9.
Broeckaert, B, Mullie, A, Gielen, J, Desmet, M, Declerck, D, Vanden Berghe, P & FPZV Ethics Steering Group 2012, Palliative sedation guidelines, Federatie Palliatieve Zorg Vlaanderen, viewed 18 Sep 2015, http://www.pallialine.be/template.asp?f=rl_palliatieve_sedatie.htm.
Hain, RDW 2014, 'Euthanasia: 10 myths', Archives of Disease in Childhood, 99(9), pp. 798-799.
Horne, DC 2014, 'Re: Why the Assisted Dying Bill should become law in England and Wales', BMJ, 349, p. g4349/rr/759847.
Downar, J, Boisvert, M & Smith, D 2014, 'Re: Why the Assisted Dying Bill should become law in England and Wales [response]', BMJ, 349, p. g4349/rr/760260.
Blog by Neil FrancisPosted on Tuesday 2nd April 2019 at 7:23pm
'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. Hereare the actual facts:
FACT: Peer-reviewed scientific research shows that the non-voluntary euthanasia rate of both the Netherlands and Belgium has droppedsignificantly 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.
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.