Blog by Neil FrancisPosted on Tuesday 24th September 2024 at 11:54pm
The Dutch LZA-LP has just published its latest annual report.
Nearily two decades ago...
It seems like such a long time.
The Groningen Protocol
Back in 2005, the Dutch Paediatric Association (NVK) ratified what is known as the Groningen Protocol. It was adopted into the nation's regulations in 2006. It allows for the termination of a neonate's life in very particular circumstances, via strict processes, and reported to the regulating authority, the LZA-LP.
Only the most grave, extremis circumstances are eligible, for example Herlitz type epidermolysis bullosa, an untreatable condition that causes extreme internal and external blistering, and then death.
Then in 2013, the Dutch medical association (KNMG) released a medical media statement saying that each year, some 650 of 175,000 Dutch neonates will die not long after birth.
VAD opponents become enraged
Opponents of voluntary assisted dying (VAD) immediately became enraged, joining dots that didn't exist.
"After a decade of legalized assisted dying in the Netherlands, it is estimated that as many as 1 in 3 deaths in the country are from euthanasia [itself false] – including 650 babies each year." — Anti-VAD correspondent
The flood of false associations continued at least until 2016. It was then that I conducted a scholarly, forensic and exhaustive investigation into the Groningen Protocol, its history and its use, as well as documenting the trail of religious institutions running the "650 babies" association story up the media flagpole. I published a paper on it.
What's happened since then?
For appropriate reference, in the nine years immediately preceding the Protocol, there were 22 cases of neonatal euthanasia in the Netherlands.
That's not per year. It's the total over nine years. An average of a bit over two a year. Not 650.
And since regulation?
The LZA-LP has just released its 2022-23 report on neonatal euthanasia cases, so we're now up to date. And the figures are:
That is, in 9 years prior to the Groningen Protocol there were 22 cases, while in twice the period after its introduction (18 years), there were 3.
The findings show that shining a light on practice helps improve it. And that VAD, whose numbers have increased in the Netherlands, is not associated with a concomitant rise (but rather a major drop) in the small number of neonatal euthanasia cases.
I've yet to see any of the sources who spread "650 babies euthanised every year" misinformation publish a correction or refer to the LZA-LP annual reports. I wouldn't hold my breath, either.
More of the same
The "650 babies" caper is still doing the rounds.
Take Lord Alton of Liverpool for example. Last year he gave an address to a Catholic Social Thought forum, in which, after invoking Nazi Germany, he said:
"For those who would contend that infant euthanasia in the Netherlands is only permitted for rare and exceptional, cases, a Dutch commission on euthanasia argued in 2013 that as many as 650 infants should be eligible for the practice in the country each year." — Lord Aston of Liverpool
Actually, it was the Dutch medical association, not the Dutch euthanasia commission. It was 650 babies die, not "should be eligible for euthanasia". And the already small numbers have radically dropped, not risen.
But let's not let the facts get in the way of a good story.
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.
Netherlands 'suicide contagion' from assisted dying: Theo Boer's smoke and mirrors
Author(s)
Neil Francis
Journal
Journal of Assisted Dying, vol. 4, no. 1, pp. 1–11.
Abstract
Background: Concerns had been raised about the scientific quality of a 2017 article by ethicist Theo Boer in which he theorised that lawful voluntary assisted dying (VAD) would potentially ‘dampen’ suicide rates, but drew the opposite conclusion: the suggestion that VAD cases have caused higher suicide rates. Methods: A structured, forensic examination of the article was conducted. Results: Numerous serious shortcomings were found, including (a) profound unfamiliarity with the complexity of suicide; (b) lack of a clear and specific pre-hoc methodology; (c) numerous unsupported speculations; (d) cherry-picked data and casual dismissal of data at odds with the conclusion; (e) a simple correlation interpreted as causation while failing to control for any confounding factors; (f) incoherent, contradictory and misleading statements; and (g) multiple editorial errors. Conclusions: Boer’s article is poorly conceived and carelessly assembled, revealing unfamiliarity with both the subject matter and with scientific principles. The conclusions drawn are not supported by the article’s methodology or data. The article offers mere smoke and mirrors to conclude that VAD may increase suicide rates, at odds with wider evidence.
Francis, N 2019, 'Netherlands "suicide contagion" from assisted dying: Theo Boer's smoke and mirrors', Journal of Assisted Dying, vol. 4, no. 1, pp. 1-11.
The F filesPosted on Tuesday 22nd March 2016 at 12:00am
One of the articles wrongly claiming 650 Dutch babies euthanized
Opponents of assisted dying have fallen prey to misinformation contagion about the Dutch Groningen Protocol, claiming that 650 babies would be or are euthanized every year. The claim is comprehensively and evidentially false.
Starting in 2013 and increasing in shrillness in 2015, numerous opponents of assisted dying law reform—many of whom are connected to conservative (Christian) sources—published online articles making false claims about the Dutch Groningen Protocol, wrongly claiming that up to 650 babies could be, would be or actually are ‘euthanized,’ ‘killed’ or ‘murdered’ every year under the Protocol’s provisions.
A national Dutch Regulation (not statute) effective since late 2006 whose current name is so long that it remains convenient to use its old name, ‘Groningen Protocol,’ even though it has changed.
Permits, only as a last resort and with a number of strict conditions, the intentional ending of a newborn’s life when the newborn is in current (not merely anticipated) untreatable and unrelievable extremis.
Mandatory reporting of intentionally hastened deaths to a national Commission and the Board of Prosecutors General at The Hague.
Physician is not cleared until the case is deemed acceptable by the Commission and the Board and the Minister of Security and Justice.
The Regulation is entirely separate from and unrelated to the Dutch Euthanasia Act for competent adults.
Where did the '650 babies euthanized' claim come from?
In 2013 the Royal Dutch Medical Association (KNMG) published a media release that launched a major policy paper about end-of-life decisions for neonates. The media release stated that of the approximately 175,000 births in the Netherlands each year, around 650 newborns will die as a result of severe congenital defects.
Some of these babies die soon after birth, in the delivery room. Others die later in neonatal intensive care despite the best interventions attempting to keep them alive. Yet others die after futile treatment is withdrawn and palliative (comfort) care is administered to minimize suffering prior to death.
Only in a tiny minority of cases is there a medical intervention with an explicit intention to hasten the death of the newborn, who is in untreatable and unrelievable extremis.
Despite this clarity, opponents—mostly linked to conservative religious sources—jumped on the misinformation bandwagon and trumpeted that 650 babies either could be or would be or are actually ‘euthanized,’ ‘killed’ or ‘murdered’ every year in the Netherlands.
What's the actual evidence?
Neonatal euthanasia occurs around the world regardless of prohibition and is not caused by a protocol or regulation
For example, the rate in France, with no regulation, is much higher than the Netherlands.
Intentional hastening of neonatal death in the Netherlands is rare
Most neonatal deaths occur either quickly with no medical intervention, or intensive treatment proves futile and palliative (comfort) care is administered until death.
The (Groningen) Regulation has been further restricted since it was first formulated
It has not been 'relaxed' as claimed by some opponents.
The Regulation is separate from and completely unrelated to the Netherlands' Euthanasia Act
The Euthanasia Act is only for mentally competent adults (and 12-16 year olds with parental agreement).
Physicians do not receive black-letter law protection as they do under the Euthanasia Act
Reporting, investigation and acceptance requirements are even more rigorous than under the Euthanasia Act.
The rate of intention to hasten neonatal death has decreased since the Regulation came into effect
In eight years prior to Regulation there were twenty two reported cases, and only two in eight years since Regulation.
The rate of medical end-of-life decisions with an explicit intention to hasten death was 8–9% prior to Regulation, dropping to 1% after Regulation.
The use of neuromuscular blockers has decreased.
Physicians report improved communication with parents
Shared decision-making and better opportunities for parents to grieve the loss of their child.
There are clear explanations for the decrease in neonatal euthanasia in the Netherlands:
Physicians report they are fearful of prosecution under the Regulation, so they now more often administer palliative care not intended to hasten death.
A folate supplementation program for pregnant females has resulted in a substantial drop in the rate of spina bifida and related disorders.
An antenatal screening program at 20 weeks has resulted in a higher rate of pregnancy terminations for major congenital disorders.
In conclusion
Despite all these facts, in an epidemic of 'confirmation bias' that drove misinformation contagion, many anti-euthanasia commentators have published false claims about '650 babies euthanized' under the Dutch Groningen Protocol. I provide a forensic examination of the issue in the latest edition of the Journal of Assisted Dying.
This is not the first example of how opponents of assisted dying widely circulate information that is untrue (e.g. check out the Council of Europe Declaration 1859 case), and it won't be the last. However, for opponents of assisted dying to avoid egg on face, I'd recommend:
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.
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.