Fudge

To use unscientific analysis methods or inappropriately selective data to support an argument or conclusion, where valid scientific analysis methods or use of available full data would support different conclusions.

Neonatal deaths under Dutch Groningen Protocol very rare despite misinformation contagion


Author(s)

Neil Francis

Journal

Journal of Assisted Dying, vol. 1, no. 1, pp. 7–19.

Abstract

The Groningen Protocol specifies criteria for the potential termination of life in severely ill newborns in extremis with untreatable and unrelievable conditions. In September 2006 the Netherlands formally adopted a Regulation incorporating the Protocol. Despite the Regulation’s development through extensive professional consultation, endorsement by the Dutch Paediatric Association, empirical data showing a decrease rather than increase in use, and research showing that neonatal euthanasia occurs around the world in the absence of regulation, the Dutch Regulation has sparked controversy. More recently it has been claimed that hundreds of babies a year are killed under its provisions. Forensic analysis reveals the claim to be comprehensively and evidentially false. Wide online dissemination of the claim by mostly religious sources demonstrates confirmation bias and misinformation contagion.

Article keywords

Netherlands, Groningen Protocol, neonatal euthanasia, palliative sedation, neuromuscular blocker, non-treatment decision, confirmation bias, misinformation contagion, religion

Full PDF

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Citation

Francis, N 2016, 'Neonatal deaths under Dutch Groningen Protocol very rare despite misinformation contagion', Journal of Assisted Dying, vol. 1, no. 1, pp. 7-19.

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He was red in the face and the veins on his neck were standing out. He involuntarily spat as he shouted while furiously jabbing a scientific journal paper high into the air. “This paper proves that palliative sedation doesn’t hasten death!,” he bellowed from the audience.

The recipient of the Catholic priest’s[§] ire was Dr Rodney Syme, who had just delivered a paper at a Catholic bioethics conference in Melbourne, Australia.

The presentation didn't win over an already skeptical audience given that his address was to argue, by referring to the scientific literature, that palliative care can’t always help alleviate refractory end-of-life symptoms and that continuous deep sedation (CDS) may hasten a patient’s death.

By the end of the address the audience was bristling with hostility and our priest bolted to his feet to commence the attack.

I hadn’t seen the journal paper the priest was brandishing, so immediately after the conference I retrieved a copy and studied it.1 You can obtain your own copy here.

But first, a little background on the doctrine of double effect.

 

Doctrine of double effect

There has been ongoing debate—both scholarly and otherwise—about whether CDS (particularly the administration of higher doses of opioids) for dying patients may hasten their death. CDS may be administered where the dying patient is suffering from intolerable and otherwise unrelievable symptoms, for the purpose of relief from those symptoms through the cessation of consciousness, even if it might hasten the patient's death.

To some, this is an uncontroversial medical intervention supported by the doctrine of double effect. The doctrine is widely attributed to thirteenth century Catholic Saint Thomas Aquinas, though he probably developed it from ancient Roman principles.

The doctrine says that it is acceptable to take this kind of action if it is proportionate to the suffering of the patient, that there are no other

 

less problematic alternatives, and that the doctor's intention is to relieve the suffering and not to hasten the patient’s death.

Skeptics of the doctrine point out that it can’t be reliably determined what the doctor was actually intending when they administered CDS prior to death. They also identify that the notion that it’s OK for a doctor to kill their patient (hasten her death) as long as the doctor “doesn’t really mean to,” is ethically questionable.

So, on the one hand the doctrine of double effect is relied upon to defend doctor actions, and on the other, it is claimed that CDS doesn’t hasten death in any case.

That’s having your cake and eating it too. If CDS didn’t hasten death, doctors wouldn’t need the doctrine of double effect as a defense.

Poor methodology

Back to the brandished paper. Having read it, I don’t understand how this paper passed peer review, assuming it was indeed peer reviewed. It’s a fact of life that on occasion, even prestigious journals like Lancet and the Journal of the American Medical Association publish manuscripts that shouldn’t see the light of day. I argue that this article (from Annals of Oncology) is one of them.

The research suffers from multiple, serious methodological problems.

The research suffers from multiple, serious methodological problems. Sure, the researchers attempted to match test patients (who received CDS) with control patients (who didn’t receive CDS), by age, class, gender, reason for admission and for functional status. But there the good work ends.

Here are some of the serious methodological flaws in the study.

  1. Primary measure invalid. The authors report that they measured patient survival time from admission to hospice until death from any cause. This alone invalidates the entire study. If you say you are measuring the effects of CDS, then you have to measure from the commencement of CDS, not from some other event that is not the substance of your test.
  2. Insufficient inclusion control. There is so much variability amongst the test and control subjects that the possibility of sufficient sensitivity to detect differences is highly unlikely. For example, around half of patients (53%) were admitted for uncontrolled symptoms of many and varied kinds but were not imminently dying, while a large minority (41%) were imminently dying. There was a wide range of cancer types from slow to aggressive, and of metastatic sites. The sheer breadth of patient contexts gave rise to a survival standard deviation (68% of observed variance, 6 days) that was 50% larger than the mean survival period (4 days). Translating that into 95% confidence (two standard deviations), the variance was three times larger (12 days) than the mean (4 days). Put another way, at 95% confidence, patients survived from minus 8 days to plus 16 days (from admission, not administration of CDS). Hardly the stuff to drive assertive conclusions.
  3. Insufficient intervention assessment. The researchers considered only the administration of sedatives, not of any other medical or palliative interventions in their assessment of patient survival. What other interventions were administered, when and in what amount, and how successful were they? The authors also assumed that any necessary nutrition and hydration was given to patients (whether natural or by tube) equally across hospice units because “the best palliative care should be provided.” There was no mention of whether the various units had identical (or any) written palliative care practice standards or whether those standards were known and actually practiced by attending physicians and nurses in patient cases for this study.
  4. Insufficient intervention control. A wide range of sedative types (not just opioids) were administered in a wide range of doses for widely ranging periods of time; from sudden, light and intermittent, to heavy and continuous. Around half the patients receiving sedation received multiple different sedatives.

It is hardly surprising then, given this sorry state of affairs, that the study failed to find a significant difference in ‘survival’ between test and control groups: the design was certain to result in insufficient sensitivity. (Curiously, the CDS patients survived on average longer (12 days) than the control patients (9 days), though the difference was not statistically significant.)

Unscientific conclusion

In scientific studies—particularly those which have yet to be successfully replicated by other researchers—best practice dictates that the minimum ‘significance’ is cautiously attributed to the results. The minimum significance in this case would be that “our study did not find evidence to support the contention that administration of sedation hastens patient death”.

The conclusion asserted by the researchers
is not established by the study.

The next level of attribution is still cautious, but a little more assertive: “the results suggest that the administration of sedation doesn’t hasten patient death”. It is my belief, especially given the poor design and conduct of the study, that this level of attribution would be too high.

But the authors went all out. They categorically concluded that “PST [palliative sedation therapy] does not shorten life” and trumpeted it in the article’s title: “Palliative sedation therapy does not hasten death.” On the basis of this unjustifiable interpretation they further categorically concluded that the doctrine of double effect is therefore unnecessary.

The authors in my view committed a serious scientific blunder in translating an exploratory and poorly-designed study into unqualified and assertive, unsupported conclusions. How this passed peer and editorial review is a mystery.

The upshot

The upshot of this is that our priest, perhaps with an understandable deficit of expertise in scientific endeavour, grabbed a paper that supported his hypothesis and fervently believed it to provide unarguable evidence, given its unequivocal title and conclusion.

In reality, each and every paper published in scientific journals has to be read and judged on its own merits. It is not appropriate to simply accept a study’s conclusions merely by virtue of its publication in a journal, even a prestigious one.

In reality, each and every paper published in scientific journals has to be read and
judged on its own merits.

Critical appraisal (including cross-checking other sources) is the scientific standard of practice I employ as I follow trains of research and commentary on various facets of end-of-life decisions and assisted dying, across my literature collection now well in excess of five thousand journal articles, theses, books, professional policy papers and other sources.

It is a standard I commend to everyone in order to hone in on the truth and to avoid dissemination of flapdoodle, fudge and fiction.

References

1    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.


[§] The meeting was conducted under Chatham House rules, so what was said can be reported, but who said it cannot.

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Dr William Toffler (left) acknowledges no slippery slope cause-and-effect evidence, with Drs Bentz and Stevens

A new scholarly journal focused on end-of-life ethics, decision-making and practice has just been launched: the Journal of Assisted Dying. In the first article, claims by Oregon lobby group Physicians for Compassionate Care (PCC), including Doctors Bill (William) Toffler and Ken Stevens (and others) are assessed against empirical evidence and found to be completely wrong, or highly misleading as a result of selective use of data.

The new scholarly journal, the Journal of Assisted Dying, is dedicated to careful and holistic analysis of evidence in regard to the various forms of assisted dying that are lawful in a number of jurisdictions around the world... and to practices in jurisdictions where assisted dying remains illegal.

In the first article of a series on Oregon, I examine claims and speculations made by various doctors (and others who quote them), that Oregon has the second-highest suicide rate in the USA (or is always in the top 10), that Oregon's Death With Dignity Act has resulted a massive increase in the state's general suicide rate, and other astonishing statements.

Of course, the empirical evidence from the Oregon Health Authority and from the USA Centers for Disease Control and Prevention does not support these statements and interpretations, and I analyse and critique the evidence.

Some of the claims are just plain factually and hugely wrong. Others are the result of failing to read their sources more carefully, misunderstanding what the data actually represents. Still further claims are made on the basis of selectively-chosen statements from government reports, while omitting statements that are contrary to, or provide alternative and well-researched explanations for Oregon's recently rising general suicide rate.

Drs Toffler and Stevens have even published some of their claims and speculations in the British Medical Journal.1 It goes to show that even good journals sometimes publish bunkum:  their article was a letter to the editor rather than peer-reviewed research. Great care is required to sort real evidence from hype and opinion.

Ultimately, Dr Bill Toffler of PCC has acknowledged on video that there is no cause-and-effect evidence between Oregon's Death With Dignity Act and Oregon's suicide rate, an acknowledgement that went unchallenged by his two PCC colleagues present at the time, Dr Ken Stevens and Dr Chuck (Charles) Bentz. You can see Dr Toffler's statement here (at 10'50").

The Journal of Assisted Dying is an open-access journal, and you can read the full article here.

-----

1. Toffler, WL & Stevens, K 2015, 'Re: Assisted dying: law and practice around the world', BMJ, vol. 351, 19 Aug, p. h4481.


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Physician use of misinformation to speculate 'assisted dying suicide contagion' in Oregon


Author(s)

Neil Francis

Journal

Journal of Assisted Dying, vol. 1, no. 1, pp. 1–6.

Abstract

Background: Several physicians have speculated that Oregon’s general suicide rate is evidence of suicide contagion as a result of Oregon’s Death With Dignity Act (‘the Act’).
Methods: Search and analysis of physician and related online sources of Oregon suicide contagion speculation; retrieval and analysis of cited Centers for Disease Control and Prevention (CDC) and other publications relied upon; analysis of authoritative, public Government mortality data for Oregon and other USA states.
Results: Several physicians have speculated about Oregon suicide statistics in a manner that is not supported by the cited publications, or by public CDC mortality database data. The claims variously (a) misrepresent key data in the publications, (b) omit information in the publications that is at variance with suicide contagion speculation, and (c) overlook other significant information at variance with speculation. The physicians have previously acknowledged inability to prove perceived “slippery slope” effects of the Act. Other opponents of the Act have republished the physicians’ erroneous information.
Conclusions: Evidence advanced by several physicians to speculate that Oregon’s Death With Dignity Act causes suicide contagion in Oregon is variously false, misleading or highly selective—omitting key facts—and has arisen even though the physicians acknowledge they have no proof of ‘slippery slope’ effects.

Article keywords

suicide contagion, copycat suicide, Werther effect, slippery slope, misinformation, Oregon, Dr William Toffler, Dr Kenneth Stevens, Physicians for Compassionate Care

Full PDF

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Citation

Francis, N 2016, 'Physician use of misinformation to speculate 'assisted dying suicide contagion' in Oregon', Journal of Assisted Dying, vol. 1, no. 1, pp. 1-6.

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On 16th September 2015, the Victorian Director of the Australian Christian Lobby (ACL), Dan Flynn, appeared as a witness to the Victorian Parliament’s end of life choices inquiry being conducted by the Legal and Social Issues Committee. He made a number of mistaken statements, but what was most worrisome was the revelation of the ACL’s real agenda: to wind back patient rights more than a quarter century.

 

Out of touch

In his opening address, Mr Flynn opined that assisted dying was 'not supported' by a 'broad base' of Victorian Christians (not just the ACL). This belief is diametrically at odds with clear and repeated evidence from multiple sources.

In 2012, I reported on a Newspoll study into Australian attitudes towards assisted dying. Not only did a whopping majority of citizens support assisted dying, but so did a great majority of Anglicans, Catholics and other Christians (Francis 2012).

 

Australian attitudes to assisted dying law reform in 2012

Newspoll 2012: Australian attitudes to assisted dying law reform by religion (green=support, red=oppose)

These national results are reflected by a sample of over 60,000 Victorians through the VoteCompass system during the 2014 Victorian election (Stayner 2014). It confirms a substantial majority of Catholics, Protestants, other religious and non-religious Victorians support assisted dying law reform.

 

votecompassvicvereligion2014.jpg

VoteCompass 2014: Victorian attitudes to assisted dying law reform by religion (grey=population average)

Out of date

Mr Flynn then referred to a Tasmanian Parliament’s inquiry into assisted dying which rejected law reform. However, the inquiry to which he refers was held in 1998, when Oregon’s Death With Dignity Act had barely been established, the Northern Territory’s Rights of the Terminally Ill Act had been extinguished within just eight months of coming into operation, and the Dutch, Belgian, Luxembourg, Washington and other legislation and judgements did not yet exist.

So, the Tasmanian Parliament’s rejection came from a position of a then general lack of information. The Oregon law has been in effect since 1997, the Netherlands and Belgium since 2002, Washington since 2008, Luxembourg since 2009, and so on. There is now plenty of evidence that assisted dying law reform doesn’t cause slippery slopes that opponents love to theorise about.

Wrong about ‘United Nations’

Mr Flynn then said that the United Nations had in 2012 expressed concern about a ‘lax attitude’ towards euthanasia in Europe, specifically mentioning the Netherlands and Belgium. This is completely untrue. Because it’s easy to make a simple blooper during a presentation, we’ll put aside the fact that he meant to refer to a completely different organisation: the Council of Europe.

We know this because he read directly from Council of Europe declaration 1859 (Council of Europe Parliamentary Assembly 2012). His ACL submission (Australian Christian Lobby 2015) reports (as he read out) exactly one sentence of the declaration, with his added emphasis, as:

"Euthanasia, in the sense of the intentional killing by act or omission of a dependent human being for his or her alleged benefit, must always be prohibited."

But presented in this manner the statement is quite misleading. As I explain in a forensic analysis of the misinformation campaign about this resolution (Francis 2015), the resolution was utterly clear about its intent: it was not about euthanasia (it explicitly said so), but rather about advance care planning. What the resolution spoke against (in the one sentence conveyed above) is non-voluntary euthanasia, not voluntary euthanasia. Both sides of the assisted dying debate agree that non-voluntary euthanasia (one person deciding for a hastened death on behalf of another) is not acceptable. It is not contentious.

In no way did the Council of Europe's resolution critique voluntary euthanasia or comment on any jurisdiction in which it is legal. And, the United Nations source to which the ACL submission refers was released in 2001, fourteen years ago and at the time of the Netherlands' Euthanasia Act was before the Dutch Parliament. With then limited information about how such laws work in practice, it expressed concern about the upcoming Act.

Wrong about Belgium’s law and practice

Mr Flynn referred vaguely to two cases of euthanasia in Belgium in which persons who requested and received euthanasia were not experiencing intolerable pain, which Mr Flynn asserted was a required safeguard in Belgium’s euthanasia Act. This was another supposed example of transgression of safeguards.  Wrong again.

While the Belgian Euthanasia Act is officially published only in Dutch and French, a robust English translation has been prepared under the supervision of Professor Herman Nys of the Centre for Biomedical Ethics and Law at the Catholic University of Leuven (see Parliament of Belgium 2002). The word ‘pain’ does not appear in the Act… at all. What does the Act have to say about the legislature’s intent on who may qualify? The relevant clause in Section 1 says:

"the patient is in a medically futile condition of constant and unbearable physical or mental suffering that can not be alleviated, resulting from a serious and incurable disorder caused by illness or accident."

It’s abundantly clear: mental suffering from an illness or accident qualifies as much as physical suffering, and the suffering does not need to be ‘pain’ as Mr Flynn mistakenly asserted to the Parliamentary Committee.

Mr Flynn also stated that there are mobile end-of-life units in Belgium. There aren’t. (But there are in the Netherlands, and they must follow precisely all the same requirements as anyone else. They operate to provide choice to patients whose regular or reachable doctors disagree with assisted dying and therefore decline to evaluate whether the patient may qualify under the Act.)

Confused about Advance Care Directives

In further testimony, Mr Flynn opined that the degree to which a doctor should be allowed to override a patient’s Advance Care Directive (ACD) is in part influenced by whether the doctor can speak with the patient.

But if the patient can currently speak and participate in decision-making, the advance care directive doesn’t apply: it is mute and of no effect. An ACD only applies when the patient cannot currently participate in their own decision making. That’s (only) what it’s for.

Winding rights back more than a quarter century

But the most worrying aspect Mr Flynn’s testimony was the revelation of ACL’s opposition to the right to refuse unwanted medical treatment.

The Medical Treatment Act 1998 (Vic) has enshrined for now more than twenty five years a patient’s right to refuse any unwanted medical treatments. In 2003 the Supreme Court of Victoria determined that artificial nutrition and hydration (i.e. via tubes) is medical treatment and can therefore be refused under the Act.

But Mr Flynn repeatedly argued that withholding or withdrawing artificial nutrition and hydration, if the patient’s body could ‘absorb’ them, could amount to physician-assisted suicide, and that doctors must be allowed to override refusals. On the matter of patient autonomy, he said that some autonomy rests "with the patients, but a lot of the autonomy in fact is with the doctor”.

When asked if a Jehovah's Witness who refuses a life-saving and simple blood transfusion ought to be allowed to do so, he conceded that they should be entitled to, but that such a case was a “bit of an outlier”. He didn’t explain on what moral grounds one person could refuse a simple procedure to save their life, but another person mustn’t be allowed to even if the likelihood of saving life was doubtful.              

So, the ACL’s real agenda is revealed: it recommends winding back the legislative clock more than a quarter century so as to force patients to endure some medical interventions that they don’t want and firmly refuse, if the doctor wishes to proceed.

No wonder the Committee repeatedly questioned Mr Flynn to ensure they had heard and understood his testimony correctly. In conclusion, Committee Chair Edward O’Donohue observed that Mr Flynn’s evidence was “quite surprising” and “quite contrary” to wide evidence already given.

And it’s no wonder that Theo Mackaay, General Secretary of the Victorian Council of Churches—a group of 30 member churches representing mainstream Christianity—criticised the ACL as “fundamentally conservative” and expressed “deep concern that media portrayal of statements from an established and narrow focused lobby group is presented as being representative of the entire Christian community” (Uniting Church in Australia 2011).

-----

References

Australian Christian Lobby 2015, Submission to the Legal and Social Issues Committee on the Inquiry inito End of Life Choices, Parliament of Victoria, Melbourne, pp. 1-17.

Council of Europe Parliamentary Assembly 2012, Resolution 1859 (2012): Protecting human rights and dignity by taking into account previously expressed wishes of patients, Europe, 25 Jan, pp. 2.

Francis, N 2012, Australian public desire for legalisation of assisted dying in restricted circumstances, YourLastRight.com, Melbourne, pp. 11.

Francis, N 2015, Conservatives fudge Council of Europe declaration 1859, DyingForChoice.com, viewed 2 Jun 2015, <http://www.dyingforchoice.com/f-files/conservatives-fudge-council-europe-declaration-1859>.

Parliament of Belgium 2002, 'The Belgian Act on Euthanasia of May 28th 2002 (unofficial English translation)', Ethical Perspectives, vol. 9, no. 2-3, pp. 182-188.

Stayner, G 2014, Victorian election 2014: Electorate overwhelmingly back voluntary euthanasia, Vote Compass reveals, ABC News, viewed 4 Dec 2014, <http://www.abc.net.au/news/2014-11-23/victorians-back-voluntary-euthanasia-vote-compass/5910668>.

Uniting Church in Australia 2011, Australian Christian Lobby does not represent all Australian Christians, nor all Christian viewpoints, 8 Dec, Media Room, viewed 11 Dec 2011, <http://blogs.victas.uca.org.au/mediaroom/?p=971>.


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Bulldust is often advanced by opponents of assisted dying law reform—a reform which most citizens want—to scare or bamboozle us against the reform.

Why is there so much misinformation about? The answer is straightforward: because so far it's worked.

More than academic niceties

This isn't just an academic argument about getting the facts right. It's a fundamental battle between different world views, where misinformation against assisted dying law reform has often held sway. Here are just two real examples:

Examples of real impacts of misinformation

  1. In Australia, in every Parliamentary debate over an assisted dying Bill before them, numbers of opposed politicians have quoted the rhetorical sham "the vulnerable will be at risk" (see why it's a sham here). With the exception of the Northern Territory's Rights of the Terminally Ill Act in 1996, every Bill before Australian Parliaments has been lost or filibustered until the end of the Parliamentary term on this fearmongering. And the Rights of the Terminally Ill Act was annulled by the Federal Parliament in 1997 on the same grounds.
     
  2. In Ireland, the High Court made a determination as to whether Marie Fleming, with advanced multiple sclerosis, was constitutionally allowed to receive assisted dying (Fleming v. Ireland and Ors 2012 10589 P). The court rejected Fleming's claim, saying that the "strikingly high" rates of non-voluntary euthanasia in Switzerland, Netherlands and Belgium "speaks for itself as to the risks involved". But sound research shows that the rates in these countries are similar to rates in other countries without assisted dying laws: evidence of the high degree of 'evidential' bull that was served up to their Honours.

It's time to stop the bull in its tracks

DyingForChoice.com believes it's time for the bull, the misinformation, to stop. It is unacceptable for rational citizens to be denied freedoms on the basis of scaremongering and erroneous information. This is the purpose of the F files. It provides citizens, politicians, policy advisors, healthcare workers, media professionals, researchers and others the evidence, arguments and resources to be properly informed and to avoid misinformation.

 

The F Files

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The Council of Europe chamber in session.

On the 25th January 2012, the Council of Europe passed declaration 1859 on advance care planning. Immediately, lobbyists opposed to assisted dying loudly proclaimed that the resolution banned euthanasia across Europe, when it did nothing of the sort. What actually happened?

Declaration 1859 on advance care planning

The Strasbourg-based Council of Europe passed declaration 1859 on 25th January 2012. The declaration was about advance care planning, which allows patients to inform others about what treatments they would or wouldn't want if they become unable to participate in treatment decision-making.

The declaration made the explicit point that it was about advance care planning and not about euthanasia or assisted suicide.  It made the point that non-voluntary euthanasia is unacceptable—that is, that others should not make death-hastening decisions about a person for their 'alleged benefit'. This is an important point on which both sides of the assisted dying debate can agree.

Council of Europe resolutions are informative to members, but are not binding.

Misstatements by opponents of assisted dying

Despite this simplicity and clarity, the very next day after the vote, a host of conservative religious organisations and commentators began trumpeting that "the Council of Europe banned euthanasia across Europe." It started with the Catholic Church (through its online service Zenit) and sprinted right around the world in a matter of days—even appearing eventually in a professional journal paper two and a half years later.

What really happened: the evidence

But no matter how often and how loudly lobbyists try to claim that the Council of Europe banned euthanasia across europe, it did nothing of the sort.

Read the forensic analysis of the misinformation trail in the F files, here.


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MEDIA RELEASE — FOR IMMEDIATE RELEASE — 5 JUN 2015

Veteran assisted-dying campaigner Mr Neil Francis has announced the launch of a new website, whose purpose is to provide rigorous and reliable information about assisted dying, and to expose misinformation for what it is.

Mr Neil Francis, a former President of the World Federation of Right To Die Societies, and founding past Chairman and CEO of Australian alliance YourLastRight.com, has today announced the launch of a new website, DyingForChoice.com. The website will provide authentic and valid information about assisted dying law reform.  The overwhelming majority of citizens want the right to choose a peaceful death hastened with the help of their doctor if they face the torture of a terminal illness, yet the option remains illegal.

"It's critical that the community, and especially politicians who will decide on law reform on behalf of the people, are properly informed," he said. "Currently, politicians and the media are inundated with misinformation that paints a false and bleak picture of the reform."

Mr Francis, who holds one of the world's largest specialist literature collections on assisted dying research and related topics, says that he plans to redress the balance. "Not only will I provide solid evidence backed by reliable sources, but I will clearly expose information that is incorrect, and identify the source of the incorrect information where that is known," he said.

Mr Francis gave an example of mistaken information he had already exposed. In a public debate at the University of Tasmania in August 2011, he pointed out to the audience that the Australian Family Association's website 'HOPE', operated by Mr Paul Russell, contained a page incorrectly stating that the Oregon Death With Dignity Act had caused 'suicide contagion'. Mr Francis showed the audience (and Mr Russell, who was debating opposite) Oregon government suicide data demonstrating that this statement was completely at odds with the evidence.

"And yet," said Mr Francis, "that misinformation stayed published on Mr Russell's website for a long time."

In September 2013, South Australian MPs were considering a voluntary euthanasia Bill. Mr Francis sent the MPs a video pointing out among other things the HOPE claim about Oregon suicide contagion and showing why it was wrong.

Only after this, said Mr Francis, did the offending claim disappear from the HOPE website.

"Yet this and many other invalid claims are made repeatedly around the world. While we can respect a person's personal and private opposition to assisted dying law reform, misinformation will now be rigorously highlighted and corrected," he said.


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The Council of Europe chamber in session.

Here’s a clear example of mistaken information (misinformation) — more commonly known as ‘bull’ — published by conservative opponents of assisted dying law reform. In this case, lobbyists and commentators misreport by fudge: by cherry-picking and repositioning a declaration of the Council of Europe, asserting that it ‘banned euthanasia' throughout Europe.

It did nothing of the sort.  So what actually happened?

The Council of Europe

The Strasbourg-based Council of Europe (not to be confused with the Brussels-based European Union or its strategic advisory body the European Council or representative body Council of the European Union) commissions careful studies into various subjects of importance to its member states.

In 2011, the Council’s  Social, Health and Family Affairs Committee conducted a study called “Protecting human rights and dignity by taking into account previously expressed wishes of patients.” Its purpose was to make recommendations about advance care directives, and enduring powers of attorney—also known in some jurisdictions as guardianship.  These are preferences, documented in advance by a person, which help ensure his or her healthcare wishes are respected and honoured at times when the person can’t currently decide and speak for him or herself. The Committee’s report was handed down as Document 12804.

Wednesday January 25th 2012

On January 25th 2012, declaration 1859 regarding the Committee’s report came before the Parliamentary Assembly of the Council of Europe (PACE) for consideration and a vote.

After most delegates had left the very lengthy session, some remaining delegates moved an amendment to the declaration. While it was procedurally their right to do so, they made the attempt only when some five sixths (268 of 318) of their Council colleagues were absent.  

David Pollock of the European Humanist Federation describes the delegates pushing the amendment as:

“an unlikely alliance of the Catholic Church and evangelicals like Pat Robertson who is behind the European Centre for Law and Justice.”

As a result, a statement mentioning euthanasia was added to the original declaration and was passed by (a tiny) vote.

You can read the entire declaration here.  It’s less than two pages.

Now, what the declaration has to say about ‘euthanasia’ appears exclusively in Clause 5, and Clause 5 says in its entirety:

“5.   This resolution is not intended to deal with the issues of euthanasia or assisted suicide. Euthanasia, in the sense of the intentional killing by act or omission of a dependent human being for his or her alleged benefit, must always be prohibited. This resolution thus limits itself to the question of advance directives, living wills and continuing powers of attorney.”

Notice that the clause contains exactly and only three short sentences.

  1. The first sentence is explicit and unambiguous: the declaration is not about euthanasia or assisted suicide.
  2. The second sentence makes it abundantly clear that hastened-dying decisions made by persons other than the patient themselves but alleged to be (i.e. by others) for a ‘dependent’ patient’s ‘benefit’ are unacceptable. Declaring against such non-voluntary euthanasia is a fundamental principle on which both sides of the assisted dying debate can agree. The resolution does not speak against voluntary euthanasia: that is, when a competent patient chooses assisted dying for themselves.
  3. The third sentence reiterates clearly that the declaration deals only with advance directives ('living wills') and continuing powers of attorney (persons granted the legal power to make decisions consistent with the advance directive). Note that the declaration wording does not even speak against assisted dying options within advance directives where permissible by law (e.g. as in the Netherlands), because these are made voluntarily by a competent patient on their own behalf and not by someone else for some 'alleged benefit’.

So, the declaration is not in conflict in any way with the laws of member states which already have assisted dying laws. Nor does it preclude other member states from introducing assisted dying laws.

Indeed, the declaration is not in conflict because the adoption of declarations by each member state is voluntary. It is incorrect to represent in any way that a Council of Europe declaration is a ‘determination,’ ‘ruling,’ ‘ban,’ ‘prohibition’ or other form of obligation upon its members.

But don’t just take my word for it.

Dr Stephen Latham, Director of the Interdisciplinary Centre for Bioethics at Yale University, states unequivocally in his blog on bioethics:

“… it’s a mistake to report it [the declaration] as a condemnation of assisted suicide, or to anticipate that it will have strong effect on pending cases involving assisted suicide.”

Dr Latham rightly points directly to the explicit declaration statement that it “is not intended to deal with the issues of euthanasia or assisted suicide." He further affirms that the European Court for Human Rights (a court of the Council of Europe) has held that Article 8 of the Convention for the Protection of Human Rights and Fundamental Freedoms protects the individual’s choice to avoid a painful and undignified death.

So, despite the clarity of the declaration, how long did it take for opponents of assisted dying to publish mistaken information about it?

Thursday January 26th 2012

Within mere hours of the vote, cherry-picked bull began charging around the globe.

Bolting energetically out of the paddock was the Catholic online newspaper promoting Vatican opinion, Zenit. Proclaiming jubilantly, “Anti-euthanasia ruling hailed as major victory”, Zenit stumbled at the first hurdle of truthfulness —the declaration was not, in any sense, a ‘ruling,’ nor called for a blanket “prohibition of euthanasia” as its lead paragraph states.[1]

Off to a similarly agile start was Dr Grégor Puppinck, Director General of the conservative Christian lobby group the European Center of Law & Justice — who you will remember David Pollock described above as in an alliance with the Catholic Church and others.  Published on the Catholic Family-backed Turtle Bay and Beyond blog, this article was wrongly titled “Major victory for life in Europe: euthanasia must always be prohibited.”[2]

For good measure, Dr Puppinck’s opinion piece, complete with alternate headline “Victory: Council of Europe adopts resolution against euthanasia”, was published the same day on the USA Christian/Catholic pro-life website LifeNews.com.[3]

Similarly, Christian/Catholic pro-life website LifeSiteNews.com's John Westen published a piece the same day titled "Major victory for life in Europe: ‘Euthanasia must always be prohibited'".[4]

Also on the same day, the conservative European think tank European Dignity Watch’s headline likewise cherry-picked words from the declaration: “Council of Europe bans euthanasia”.[5]

Wasting no time, the Swedish Christian “Yes To Life” group trumpeted the mistruth “Council of Europe prevents euthanasia in Europe!”  (The Council of Europe would be very talented indeed if it could actually “prevent euthanasia across Europe".)[6]

Canadian Alex Schadenberg’s Euthanasia Prevention Coalition also repeated the same cherry-picked nonsense with the headline “Council of Europe states that: ‘Euthanasia must always be prohibited.’”[7]

Friday January 27th 2012

Well-known UK Catholic journalist Simon Caldwell was only a shade slower out of the blocks just one day later.  His article’s headline in UK’s Daily Mail rates a comprehensive fail for saying “Euthanasia ‘must always be prohibited’, rules Council of Europe.”[8]

Saturday 28th January 2012

Another day later and the UK Telegraph republished the story, misstating “Assisted suicide should be illegal through Europe, human rights body rules.”[9] (While this article had no by-line, its copy was remarkably identical to Simon Caldwell’s pieces in the Daily Mail [above] and UK Catholic Herald [below]. Caldwell is a known writer for the Telegraph.)

Monday 30th January 2012

Simon Caldwell followed up with the same article in the UK Catholic Herald, again with a false headline “Euthanasia should be banned across Europe, rules Council.”[10]

Also on 30th January, Catholic-founded Australian Family Association's Paul Russel uncritically republished Alex Schadenberg’s opinion piece on their anti-voluntary euthanasia campaign site “HOPE”.[11]

Tuesday 31st January 2012

Not to be outdone, the next day the Patients Rights Council (formerly the International Task Force on Euthanasia and Assisted Suicide), an anti-euthanasia lobby group consisting essentially of two people (Rita Marker and Wesley Smith), uncritically summarised Simon Caldwell’s Daily Mail opinion piece.[12]

Wednesday February 1st 2012

On February 1st the polemic was republished in CathNews in Australia, with false headline “Council of Europe says ban euthanasia.”[13]

The Catholic Archdiocese of Sydney republished on its youth engagement website xt3, with the headline “Euthanasia should be banned across Europe, rules Council.”[14]

Friday February 3rd 2012

By February 3rd, the Church of England Newspaper had jumped on the bandwagon, misstating “Council of Europe assemby [sic] calls for ban on euthanasia.”[15]

So did the Scottish Catholic Observer with an extra dose of hyperbole: “European human rights body rules that euthanasia and assisted suicide should be banned in every country on the continent.”[16]

The misinformation was repeated on the Irish Catholic web portal CiNews, the blog site of conservative USA Christian organisations the Population Research Institute and The Moral Liberal, the Catholic parish for Wymouth Our Lady Star of the Sea, in an opinion piece by Catholic British Peer David Alton, the Perth Catholic Archdiocese LJ Goody Bioethics Centre, the Australian blog site of Catholic News Jesus Caritas Est, … I think you get the idea.

No wonder Yale University’s Dr Latham mused dryly in his blog:

“… a number of different publications are mistakenly alleging that PACE has called for a permanent ban on assisted suicide.”

September 19th 2012

Later in the year I was kindly invited to speak at a Brisbane public forum on the legalisation of voluntary euthanasia hosted by the Queensland Council for Civil Liberties. Mr Yuri Koszarycz, then recently retired lecturer in bioethics, ethics and church history from Australian Catholic University, spoke for the opposing position. Given the audience were paying to listen to our respective pearls of wisdom, it was paramount that our material be properly researched and backed by good evidence.

Yet Mr Koszarycz dropped the “R” bomb (amongst others) in his presentation: yes, he asserted that the Council of Europe had ‘ruled’ against euthanasia, when it clearly had not.

July 17th 2014

Dr Grégor Puppinck (remember, he’s Director General of the European Center of Law & Justice) makes another appearance, this time as the lead author of a paper published in the International Journal of Human Rights[17]. In it, he rails against his perception that when reviewing cases of assisted suicide, the European Court of Human Rights ‘ignores’ Council of Europe declaration 1859. To support his argument, he quotes the single sentence “Euthanasia, in the sense of the intentional killing by act or omission of a dependent human being for his or her alleged benefit, must always be prohibited” (p 746).

The paper’s discussion quite omits the two crucial, framing sentences, so a reader unfamiliar with the declaration’s original text would not know that it said it is “not intended to deal with the issues of  euthanasia or assisted suicide” and that it is about “living wills and continuing powers of attorney”. No wonder the European Court of Human Rights doesn’t believe that declaration 1859 is crucial when considering cases of assisted suicide: declaration 1859 is about advance care planning!

Indeed, a reader of the journal article could be forgiven for wrongly deducing, on the basis of the only sentence quoted by authors Puppinck and de la Hougue, that the Council had ‘banned euthanasia’.  It most certainly had not.

Conclusion

So let’s recap what happened. The primary facts are:

  1. The Council of Europe passed a declaration (#1859) about advance care planning—not about euthanasia or assisted suicide (it explicitly said it wasn't).
  2. The declaration spoke only against non-voluntary euthanasia (NVE)—not against voluntary euthanasia (VE) about which it contained no statement of any kind.
  3. Council declarations are in no way 'rulings', 'bans' or 'prohibitions' on its members because member adoption is entirely voluntary.

Yet despite the clarity of the declaration, quite a number of anti-euthanasia lobby groups and commentators, commencing the very next day and starting with the Catholic Church (through Zenit) and the European Centre for Law and Justice, published editorials mistakenly stating that the Council of Europe had ‘banned euthanasia': in other words, spreading bull.

A question that could be asked is this: how did it happen that so many anti-euthanasia individuals and groups published misstatements so closely together in both interpretation and in time?


[17]  Puppinck, G & de La Hougue, C 2014, 'The right to assisted suicide in the case law of the European Court of Human Rights', International Journal of Human Rights, vol. 18, no. 7-8, pp. 735-755.

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The F files
 

The public conversation about assisted dying law reform has been influenced by misinformation from opponents for far too long. Often, misinformation is simply given in ignorance, but sometimes not. It is mandatory that a conversation as important as assisted dying for those suffering at the end of life is informed by accurate information and evidential and reasoned views. Arguments that deceive or attempt to shut down the conversation have no place.

Whether misinformation is Fearmongering, Filibuster, Flip-flop, Flapdoodle, Fudge, or Fiction or Faith, the F files identifies misinformation and those who are providing it.

You can help by sending records of misinformation claims to us, and asking claimants to correct the errors.

 

Fundamental forms of misinformation

fearmongering.jpg      

Fearmonger

Represent something as considerably more sinister or dangerous than it is when judged by objective criteria.

filibuster.jpg  

Filibuster

Artificial and overly-lengthy process used in an attempt to stall or block a political outcome.

flip-flop.jpg  

Flip-flop

Multiple inconsistent or opposed arguments used to justify a position.

flapdoodle.jpg  

Flapdoodle

An argument that superficially seems intuitively attractive, true or real, but is in fact meaningless or nonsensical.

fudge.jpg  

Fudge

Unscientific analysis (e.g. selective data) used to support an argument that is not supported by proper, full analysis.

fiction.jpg  

Fiction

A thing that is untrue, or invented or feigned by imagination with no sound or verifiable evidence.

faith.jpg  

Faith

An argument that all others should adhere to a particular religion's values, tenets and rules.

 

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