Religion

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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It was inevitable, the latest attempt by senior British clergy to persuade politicians to reject Lord Joffe’s Assisted Dying for the Terminally Ill Bill. Led by the Archbishop of Canterbury, Justin Welby—whose predecessor Lord Carey now supports the reform—nine clergy sent a letter to ‘remind’ Parliament of supposed terrible consequences.

So what points did the clerics offer to Parliamentarians, and are they valid? Let’s take a look at each of the five ‘reasons’ advanced in order to deny Brits assisted dying choice.

Firstly, the clerics argue that the ‘answer’ is palliative care. Britain boasts the world’s gold standard in palliative care practice and it’s a great credit to practitioners. But the medical literature as well as the experience of the dying and their loved ones is conclusive: palliative care simply can’t always help. Experts say that “relief of suffering remains an elusive goal for many patients” and it’s “clear that improving palliative care will not remove the need for legalizing assisted dying.”

The premise of palliative care is to provide interventions. However, sometimes, not only does interventionism fail to help, it can itself be a source of suffering. And the individual may not want interventions, but rather to alight from the train of terminal illness one or two stops before the inevitable and intolerable terminus.

Secondly, the clerics argue that jurisdictions with assisted dying laws are facing serious problems, including wrongly claiming that the Dutch are now campaigning to include dementia as a basis to seek an assisted death. This right has been enshrined in Dutch law through advance care directives since 2002. In practice, the request is largely declined by doctors.

The clerics complain that dying patients in assisted dying jurisdictions are now using the law—hardly a surprising outcome given the proportion of people now dying of cancer in their later years.

They complain about supposed ‘doctor shopping’ in Oregon. If the patient’s first (or second) doctor declines a request to consider an assisted death on the basis of the doctor’s own convictions, are these clerics suggesting that the patient ought to have their right to lawful assessment denied, because their first doctor or two were religiously opposed?

Thirdly, the clerics argue that the majority of doctors are opposed to assisted dying law reform, ironically pointing out that a quarter to a third of doctors support reform. Why should Brits be denied a choice because two thirds of doctors currently won’t participate in that choice? (What proportion of doctors would participate in abortions, currently legal?) And doctors—who make up fewer than one in two hundred Brits—don’t elect Parliament, so why are their diverse views a case for outright denial?

Let’s name this argument for what it is: an appeal to apparent ‘authority’. Clerical ‘authorities’ (who don’t represent their flocks who are overwhelmingly in favour of reform) are making an appeal of medical ‘authorities’ as the reason to reject something the public believes should be a right. Paternalism indeed.

The fourth argument spreads an icing of hubris on the cake of objections. The clerics argue that the public really don’t understand and don’t know what they mean when the great majority keep saying ‘yes’ to repeated polls on assisted dying law reform.

Public opinion in fact demonstrates the opposite of gullibility: rejection of the attempted scare campaigns of religious ‘authorities’.

Fifthly (and thankfully lastly), the clerics argue that a right to choose assisted dying will inevitably become a duty to choose it. If the theory that ‘a right becomes a duty’ were an argument to reject one right, then all rights would necessarily be rejected on precisely the same principle.

Enshrined in the Mental Capacity Act 2005, Brits already have a right to refuse any medical treatment, even if life-saving. A Jehovah’s Witness may refuse a simple blood transfusion. An elderly person may refuse burdensome surgery. Yet the right to refuse treatment can theoretically become a duty to refuse, in exactly the same manner.

If the clerics genuinely believe their theory then they would argue to Parliament with equal force that the right to refuse medical treatment should be rescinded. Why don’t they?

The real reason for opposing the assisted dying Bill appears in the letter’s preamble: the clerics “hold all human life sacred”, in other words, a ‘gift from God’. Yet contemporary British Social Attitudes surveys reveal that the majority of Brits are not religious.

So the real question for the Parliament is this: should indefensible arguments put forward by a few clerical ‘authorities’ form a basis for denying choice wanted by the overwhelming majority of voters?


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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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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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