Regulation

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DyingForChoice has translated the entire 2016-2017 report into English

Belgium's Federal Commission of Control and Evaluation of Euthanasia this week published its full 2016–2017 biennial report. The report is published only in French and Dutch, which places English-speaking jurisdictions at something of a disadvantage.

DyingForChoice has translated the entire report, as well as a copy of the Belgian Euthanasia Act (2002) as it currently stands with amenedments, so that English-speaking audiences can read and understand it.

A summary of key points, the full report in English, and a full copy of the Euthanasia Act, can be found in this Fact File.


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DyingForChoice has translated the Belgian 2016-2017 report into English

The Belgian Federal Commission of Control and Evaluation of Euthanasia has released its full 2016–2017 report. Its reports are published only in Belgium's two national langauges: French and Dutch. So that English-speaking countries can read the report in full, DyingForChoice.com has translated the entire 70 page report into English.

Major takeouts of the 2016–2017 report include:

  • There is ample evidence that doctors take diligent care by often consulting more widely than the Act requires.
  • Assisted dying by advance directive remains very uncommon (1.3% of 2016/17 cases): almost all cases are by current request.
  • There has been a significant increase in the ‘poly-morbidities’ category, in part because of a change in the classification system, but also because more folks fall into this category as the population ages.
  • Cancer is still the major reason that patients choose assisted dying (64% in 2016/17), though its proportion of contributing illnesses is falling.
  • The number of assisted dying cases in relation to psychiatric illness went down, not up, compared to previous years.
  • Since changing the law in 2014 to permit assisted dying choice for minors, there have been just three cases: two in 2016 and one in 2017, all of severe and intractable illness. Extensive consultation occurred in each of the three cases, including assessment of decision-making capacity by at least one specialist child psychiatrist or psychologist.
  • The typical age profile of euthanasia cases has in recent years increased a decile, as the population ages. Our own analysis of Belgian official death stats (not the Commission’s) shows that the elderly are not an ‘at risk’ group: the age distribution profile of assisted deaths is still younger on average than total deaths.
  • The Commission notes that cancer diagnoses are increasing, so the counts of assisted deaths are expected to continue to rise in coming years.
  • The Commission discusses several cases that required extended review, but no cases were referred to the public prosecutor in 2016/17.

 

The full (unofficial) English report can be downloaded here: PDF 1.4Mb.

A full (unofficial) English translation of the current version of the Belgium Euthanasia Act can be downloaded here: PDF 0.3Mb.

The authoritative original versions of the Belgian 2016-2017 report can be accessed in French and Dutch.

 

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In 2002 the Dutch Euthanasia Act came into effect. Commencing in 2003, the Netherlands Euthanasia Commission has published annual reports of deaths that occur under the Act. It has just published its annual report for the calendar year 2015. The data shows that the Euthanasia Act is working as the Dutch Parliament intended.

Number of assisted death cases

There were 5,516 reported cases of assisted dying in 2015, with 208 cases of patient self-administration and 5,277 cases of doctor administration. This is an overall increase of 4.0% on the 2014 figures (5,306 total cases). Assisted deaths represented 3.9% of all Dutch deaths in 2015.

Trend in assisted dying numbers

Comment has been made in past years about the rate of increase of assisted deaths in the Netherlands. The trend in number of cases of this nature was always likely to be an 'S'-shaped curve, a trend which the 2015 data supports as the annual increases level off (Figure 1) at a small percentage of all deaths.

S-curved assisted dying rateFigure 1: Netherlands assisted dying deaths as a percentage of all deaths

Note: The Netherlands total deaths count for 2015 is not yet published: its value was estimated by extrapolation from previous years.

Figure 2 shows the year-on-year rate of change of assisted dying including a second-order polynomial best-fit trend line which illustrates that the rate of increase has slowed and the overall rate is leveling out.

Netherlands assisted dying rate trendFigure 2: Year-on-year change in the proportion of assisted dying cases

Underlying health conditions

Cancer is by far the greatest underlying health problem affecting those who choose assisted dying in the Netherlands (Figure 3). This is unsurprising since cancer is now the leading cause of death in the Netherlands, accounting for 30% of all deaths.

Netherlands assisetd dying -- underlying illnessesFigure 3: Underlying illnesses of Dutch assisted dying cases (proportion of all deaths)

Notes: Neuro=neurodegenerative diseases, Mental=mental illnesses other than dementia, Multi=multi-functional old-age decline, Other=all other illness types

While cancer accounts for the greatest numeric increase in reported assisted dying cases, other illnesses are increasing as a proportion of cases (Figure 4). Cardiopulmonary illness now underlies around 8% of cases (cardiac pathology is the second leading cause of death in the Netherlands) and neurodegenerative disease around 6% of cases.

Netherlands assisted dying -- Underlying illness proportionsFigure 4: Underlying illnesses of Dutch assisted dying cases (proportion of illnesses)

Multi-functional old-age decline underlies around 3-4% of cases. Untreatable mental illness is a rare health factor in Dutch assisted dying, with dementia present in 1 in 50 assisted deaths (2%) and other mental illness in 1 in 100 deaths (1%) .

Where assistance was rendered

Around 88% of Dutch people would prefer to die in their own home or similar care home, 10% in hospice and around 2% in hospital (Abarshi et al 2009). Those using assisted dying largely achieve these goals (Figure 5).

Netherlands assisted dying -- place of deathFigure 5: Assisted dying place of death (proportion of assisted deaths)

Around 80% of assisted deaths occur in the patient's own home. Since the Euthanasia Act came into effect, the proportion of deaths occurring in hospices and in relative's homes ("other") increased from around 2.5% to 8% (an approximately 5.5% rise), and the proportion of deaths occurring in hospitals decreased from around 11% to 3.5% (an approximately 7.5% drop). There was a slight increase of less than 2% in the proportion of assisted deaths in residential care settings, and no increase in nursing home settings.

The data confirms that assisted dying patients are usually dying in their preferred location and that 'institutionalisation,' particularly in nursing homes, is not a risk factor for assisted dying as is sometimes claimed. The greatest change in place of death since the Euthanasia Act came into effect is a decrease in hospital deaths and a complimentary increase in hospice care deaths, reflecting good palliative care practice.

Standard of practice

Of the 5,526 assisted dying cases reported in 2015, 4 were judged by the Euthanasia Committees as not meeting all necessary due care criteria: a compliance rate of 99.93% and non-compliance rate of 0.07%.

Summary

  • The 5,516 Dutch assisted dying cases for 2015 represents an increase of 4% on 2014 cases, and 3.9% of all Dutch deaths in 2015.
  • The rate of increase has slowed in line with expectations.
  • The great majority of cases involve cancer, the Netherlands' leading cause of death.
  • Assisted dying under other medical conditions is uncommon or rare.
  • Assisted dying usually occurs where the patient prefers, most often in their own home.
  • Assisted dying has decreased in hospitals and commensurately increased in hospices, in line with good palliative care practice.
  • The rate of compliance with all legal requirements in 2015 was 99.93%.

 
Some commentators have criticised the numbers of Dutch using the Euthanasia Act even though the rate remains a very small proportion of all deaths (3.9%). The question, however, is not 'how many', but whether these cases represent the contexts and circumstances the legislature had in mind when crafting the Euthanasia Act, which stipulates a raft of conditions and processes. It is clear that the legislature's intent has been upheld.
 

References

Abarshi, E, Onwuteaka-Philipsen, B, Donker, G, Echteld, M, Van den Block, L & Deliens, L 2009, 'General practitioner awareness of preferred place of death and correlates of dying in a preferred place: a nationwide mortality follow-back study in the Netherlands', Journal of Pain and Symptom Management, vol. 38, no. 4, pp. 568-77.

Regional Euthansia Review Committees (Netherlands) 2015, Annual report 2015, Arnhem, pp. 81.

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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.

I provide a forensic analysis of the claim, demonstrating it to be comprehensively and evidentially false, in the latest edition of the Journal of Assisted Dying.

 

What is the Groningen Protocol?

  • 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:

Best not to engage in
misinformation contagion.

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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

Download the full PDF: Download the full article (230Kb)

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.

Download the citation in RIS format: RIS.gif


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