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.
Marshall Perron addresses the National Press Club in 1996
Marshall Perron is a former Chief Minister of the Northern Territory of Australia, and responsible for the world's first legislation to legalise voluntary assisted dying in restricted circumstances. The law came into effect in 1995 but was extinguished by federal legislation in 1996.
This video is Perron's pioneering address to the National Press Club in Canberra, prior to the Northern Territory legislation being extinguished.
Note: audio may not work in some browsers (e.g. Firefox). If so, try a different browser.
Note: If all you see is a black screen when you access the video, you must scroll down a little to see the play controls.
Legals
Yeah, sorry there are legals before you may watch the video. You must read and agree to the terms and conditions before viewing the video.
The video and its associated sound track are courtesy of the Australian Broadcasting Corporation (ABC).
You may watch the video, but not make copies or use or reproduce it in total or in any part in any other production. To obtain rights for that, you must approach the ABC for a license.
To obtain access to the video, you will be asked for a user name and password. If you request and receive a user name and password, you agree that they are for your own personal use and you will keep them confidential and not share them with anyone else.
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.
Fact file by Neil FrancisPosted on Thursday 10th September 2020 at 11:27pm
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.
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 Friday 4th January 2019 at 11:43pm
Victoria has shown what happens at the ballot box to candidates who oppose VAD
Many news outlets are reporting that Victoria's voluntary assisted dying (VAD) Act comes into effect mid-year, and how other Parliaments around the country are likely to implement similar reforms. Moves are afoot in Western Australia, Queensland, NSW and Tasmania, with other jurisdictions to follow. Marshall Perron, former Chief Minister of the Northern Territory and architect of the first VAD law in Australia, has penned a media release to highlight how VAD influenced the Victorian election. The result wasn't pretty for opponents of VAD law reform.
Media release - Marshall Perron
Parliamentarians traditionally shy away from supporting voluntary assisted dying (VAD), believing it is politically toxic to do so. Victoria, under the Andrews government, has changed all that by showing the opposite to be true.
After legislating VAD – Victoria is the first Australian state to do so – Andrews won a thumping victory at the 2018 Victoria State election.
Former NT Chief Minister Marshall Perron said there is a common perception that the political class has not been listening to its constituents. VAD is a classic example.
There were multiple reasons for Victoria’s election result, and VAD was clearly one of them. With unprecedented 80-85% public support, it should be no surprise that Victorian candidates who supported VAD polled more strongly.
In the previous parliament, almost all Liberal members voted against the VAD legislation. The party suffered an average 6.04% swing against it in the State election.
In addition, two of the staunchest Liberal opponents of the VAD bill lost their seats. In the lower house, Robert Clark was tossed out as the Member for Box Hill, a seat he’d comfortably held for a quarter century. In the upper house, Inga Peulich was rejected by voters in South Eastern Metropolitan, a Region she’d represented for three terms.
Dying With Dignity Victoria and Andrew Denton ran targeted campaigns focusing on four electorates – Burwood, Albert Park, Bentleigh and Prahran. They used Robo calls, advertising, social media and face to face meetings to inform voters about where their candidates stood on VAD.
The Liberal candidates (one a sitting member) in these four electorates all opposed VAD. They suffered an average 10.1% drop in primary votes compared with the average drop in the Liberal vote overall of 6.04%.
The Liberal sitting member lost his seat. In the other three seats the sitting Labor and Greens members, who all supported VAD, were returned with significantly increased votes. The results for these four electorates were, compared to the 2014 election:
In Burwood, Liberal member Grahame Watt lost his seat with a 6.47% swing against. Labor candidate and VAD supporter Will Fowles was elected.
In Albert Park, Labor member and VAD supporter Martin Foley was returned with a massive 10.17% increase (two party preferred). The Liberal primary vote dropped 10.24%.
In Bentleigh, Labor member and VAD supporter Nick Staikos was returned with a massive 11.27% increase. The Liberal primary vote dropped 12.59%.
In Prahran, Greens member and VAD supporter Sam Hibbens was returned with a 7.0% increase. The Liberal vote dropped 10.29%.
Mr Perron, who introduced the world’s first successful VAD legislation in the Northern Territory in 1995 said candidates can increasingly expect to lose support when they ignore the wishes of the voters they seek to represent.
In a contest tighter than the Victorian election turned out to be, a handful of seats retained or lost on VAD could determine the outcome.
Blog by Neil FrancisPosted on Thursday 17th May 2018 at 1:27am
Which doctors 'play God' most with patient end of life decisions might surprise you
In two supplementary submissions to the Parliament of Western Australia, I report empirical evidence about the standards of end-of-life medical decision making in jurisdictions with and without voluntary assisted dying (VAD) laws. The evidence clearly contradicts the assumption of assisted dying opponents that legalised VAD will lead to worse end-of-life decision making by physicians. In fact, the evidence clearly shows which physicians are 'playing God' with their patients, and it's not the Dutch.
When I appeared as an expert witness before the Parliament of Western Australia's Joint Select Committee on end of life choices, the Hon. Nick Goiran, a staunch Christian opponent of VAD, asked me for evidence of bringing end of life decision making out of the 'dark shadows' and into the light in jurisdictions in which VAD is lawful.
Existing evidence
Of course, there's the clear evidence from both the Netherlands and Belgium that the rate of non-voluntary euthanasia (NVE) has dropped significantly and stayed lower after their Euthanasia Acts each came into effect in 2002. There's also the clear evidence that the rate of nurse administration of possible life-ending drugs has dropped significantly in Belgium with a VAD law, over a similar time period in which it had increased significantly in New Zealand, where there is no VAD law. These forms of evidence were already documented in the comprehensive submission (PDF 5.4Mb) I'd made to the Committee.
Training and decision making has improved (Supplementary 1)
Mr Goiran opined that any improvements in palliative care were not relevant to his question. In my first supplementary submission to the Committe (PDF 0.6Mb) to further inform it of the empirical evidence, I disagree. As I point out, VAD decisions are not made in a vacuum: they are made after other interventions have been considered and declined, or tried and failed to provide sufficient relief. Palliative care options are central to these considerations. Therefore, whether palliative care improves or deteriorates after VAD laws are introduced is crucial.
Adding to the body of knowledge about the quality of palliative care, in this first supplementary submission I report that Dutch and Belgian physicians attended palliative care professional training at vastly higher rates than most other countries in the several years after VAD was legislated.
I also report the research evidence showing increases in desirable end of life decision rates, and decreases in undesirable decision rates in both the Netherlands and Belgium.
Where decision making is best and worst (Supplementary 2)
In my second supplementary submission (PDF 0.2Mb), I report data from two careful scientific studies into end of life decision making by doctors across multiple countries, including the Netherlands, Belgium, Switzerland, Italy and Australia.
The results are striking: for clearly inappropriate decisions such as withholding chemotherapy or administering terminal sedation without consulting their mentally competent patient, the Netherlands was clearly the best performer with the lowest rates of these kinds of decisions amongst physicians. And who was the overall worst? Italy.
Yes, that jurisdiction that harbours the head office of the world's most actively VAD-opposing organisation, the Catholic church, and where 82% of physicians are Catholic, were by far the most likely overall to make medical end of life decisions about their mentally-competent patients without consulting either the patient or her family. Italian physicians were, respectively, more than five times, three times, and twice as likely as those from the Netherlands, Beligum or Switzerland, to make unilateral end of life decisions without consulting either the patient or her family.
So much for high moral standards under a more religiously-driven and VAD-opposing regime.
I also illustrate from another study how VAD decision making in the Flemish north of Belgium, where the rate of VAD deaths is higher, is significantly higher in quality than in the Walloon south.
Conclusion
The peer-reviewed research data currently available consistently and directly demonstrate improvements in end of life care education and decision making in jurisdictions with VAD compared with those that don't. In contradiction to VAD opponents' assumptions, it's Italian physicians — who largely oppose VAD — who tend to 'play God' most with their patients.
The evidence comprehensively supports the view that legalisation of VAD brings a wide range of end of life decision making out of the shadows and into the light, where critical and open appraisal results in significant improvements.
Fact file by Neil FrancisPosted on Thursday 7th July 2016 at 10:19pm
Lead author Professor Ezekiel Emanuel discusses the findings of the JAMA study.
Several of the world's foremost researchers in medical end-of-life matters have released a detailed and comprehensive review of the practice of assisted dying in lawful jurisdictions around the world. Published in the Journal of the American Medical Association, it does not support slippery slope hypotheses.
Professors from universities in the USA, the Netherlands and Belgium studied data from government and statutory authority reports, primary scientific studies and other sources to examine how assisted dying has been practiced in different jurisdictions around the world where it is lawful in one form or another: self-administered medication (physician-assisted dying) or physician-administered medication (active voluntary euthanasia).1
Their primary conclusion is that:
"Euthanasia and physician-assisted suicide are increasingly being legalized, remain relatively rare, and primarily involve patients with cancer. Existing data do not indicate widespread abuse of these practices."
Key findings
Key findings include:
Public opinion favouring assisted dying in developed countries has been increasing, or remained stable at high levels of approval.
The trends seem to correlate with decreasing religiosity in Western countries.
The only place where assisted dying approval appears to be decreasing is in eastern Europe, where religiosity has been increasing.
Approval amongst physicians seems to be consistently lower than amongst the public.
Assisted dying occurs everywhere, including juridictions where it is unlawful (as I have previously reported).
Most individuals who choose assisted dying have advanced cancer (as I have previously reported).
Supposedly 'vulnerable' groups are not represented in assisted dying figures at rates any higher than their presence in the overall population.
Numbers of assisted deaths in lawful jurisdictions continue to increase, but represent a tiny minority of deaths.
In jurisdictions where only self-administration is permitted, assisted deaths represent around 0.3% of all deaths.
In jurisdictions where physicians may administer, assisted deaths represent around 3–5% of all deaths.
Assisted deaths for minors and those with dementia are a very small minority of cases (as I have previously reported).
The dominant reasons for requesting assisted death include loss of autonomy and dignity and the inability to enjoy life and regular activities; not physical pain.
Doctors still report that honouring a request for assisted death is emotionally burdensome; not a routine or welcomed option.
"In no jurisdiction was there evidence that vulnerable patients have been receiving euthanasia or physician-assisted suicide at rates higher than those in the general population."
Complication rates
One aspect of the study is worthy of special mention: the small rate of assisted dying procedure complications. The available data suggests that complications may occur more often for self-administered medication than for physician administration:
For self-administration—
Difficulty in swallowing in 9.6% of cases
Vomiting or seizures in 8.8% of cases
Awakening from coma in 12.3% of cases
For physician administration—
Technical problems such as difficulty in finding a suitable vein in 4.5% of cases
Vomiting or seizures in 3.7% of cases
Awakening from coma in 0.9% of cases
This data is however of Dutch practice in the 1990s, before assisted dying was codified in statute—at a time when practice was poorly defined and a range of drugs, including opioids, were widely used. Now, practice is well-defined with almost universal use of barbiturates. The researchers expressly note that these complication rates may well have reduced.
Further, the authors refer to more recent data from Oregon and Washington which indicate very much lower complication rates (in those jurisdictions for self-administration only):
In Oregon, the complication rates are around 2.4% for regurgitation and 0.7% for awakening from coma.
In Washington, the complication rates are around 1.4% for regurgitation, plus a single case of seizure.
The importance of context
It is worth comparing the complication rates of assisted dying procedures with rates for other medical interventions to provide an appropriate context so that they may be realistically interpreted.
For example, a study of common over-the-counter analgesics for short-term pain management2 found that significant adverse effects occurred amongst 13.7% of ibuprofen users, 14.5% of paracetamol useres and 18.7% of aspirin users.
In another example, an anlaysis of primary research about surgical outcomes found that 14.4% had adverse events, almost half of which (47.5%) were moderate to fatal in severity.3
Conclusion
The study is a solid synthesis of research data and indicates that assisted dying is accessed sparingly and in accordance with the intentions of each legislature.
The adverse event rate for assisted dying appears to be substantially lower than the rate of adverse events in the use of common over-the-counter analgesics and in surgery.
References
Emanuel, EJ, Onwuteaka-Philipsen, BD, Urwin, JW & Cohen, J 2016, 'Attitudes and practices of euthanasia and physician-assisted suicide in the united states, canada, and europe', JAMA, 316(1), pp. 79-90.
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.
Anderson, O, Davis, R, Hanna, GB & Vincent, CA 2013, 'Surgical adverse events: a systematic review', Am J Surg, 206(2), pp. 253-62.
News reportPosted on Sunday 19th June 2016 at 9:03pm
The Canadian Parliament has passed a law that allows the terminally ill to choose assisted dying in restricted circumstances.
The Parliament of Canada has legalised assisted dying. (Photo: Jeffery Nichols)
The historic law was passed this Friday and allows a dying patient to opt for assisted dying within specific limitations:
The patient must —
be 18 or older;
be mentally competent;
be eligible for government-funded healthcare (at the same time as ensuring the patient has access to appropriate care, this prevents non-residents from accessing the law);
Have a serious, incurable illness or condition in an advanced state of irreversible decline; and
Be experiencing intolerable suffering.
The patient's request must be signed by two independent witnesses.
There is a mandatory cooling off period of fifteen days.
Canadian Prime Minister Justin Trudeau supported the legislation.
Jody Wilson-Raybould, Miniter for Justice, issued a statement with the Attorney General and Minister of Health, saying that the legislation as passed "strikes the right balance between personal autonomy for those seeking access to medically assisted dying and protecting the vulnerable."
VideoPosted on Thursday 10th September 2015 at 8:20pm
In this thirteen minute video, Oregonians share their experiences of the State's Death With Dignity Act, in effect since 1997. How the Act has worked successfully is described from the medical, palliative care, patient advocate, hospice, legislator and other perspectives, including the daughter of an individual who used the Act.
Part 1 covers attitudes and apprenehsions prior to the Act coming into effect.
Part 2 (2'05") reveals how patient-family-doctor conversations have improved immensely since the Act came into effect.
Part 3 (4'25") discusses the modest numbers of patients using the Act, and that many more Oregonians achieve peace of mind knowing they have a choice even if they don't use it.
Part 4 (7'30") describes how people are free to participate or not, that it is not the 'vulnerable and disenfranchised' who use the Act, and that only minor changes have been made to the Act in order to clarify certain matters, such as residency status.
Part 5 (10"50') concludes with opponents acknowledging there's no evidence for their claim that the Act has caused a 'slippery slope' effect, and State leaders clarifying that the Act has worked as intended, with positive outcomes for the people of Oregon.
MercatorNet attacks post-modern relativism: a pet peeve of the Catholic church, to be countered by "truth-tellers".
The Catholic church believes the mass media needs a Catholic presence.
Professor Margaret Somerville gets pre-eminent billing on Catholic bioethics, above the Vatican itself.
