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The Catholic Church's video which blatantlly misrepresents Belgium

The Catholic Archdiocese of Sydney has released a video which blatantly misrepresents scholarly research about non-voluntary euthanasia practices in Belgium. The lead author of the peer-reviewed research has slammed the video as "cherry-picked", "scaremongering" and "appalling". His full statement about the video appears below.

 

Watch the 1 minute video here.

 

Back in 1998, non-voluntary euthanasia  — or NVE — was carefully studied by Belgian scholars. It’s a problematic practice, even though often the medication doctors administered didn’t actually hasten death. They found it occured in 3.2% of all deaths.

In 2002, the Belgium parliament legalised voluntary assisted dying — or VAD.

In 2007, the Belgian scholars repeated their study and found that NVE had dropped by nearly HALF, to 1.8% of all deaths. Again in 2013, it was found to remain at a lower level, 1.7% (Figure 1).

belgiumnvechart2.jpg
Figure 1: Belgium's NVE rate has dropped dramatically since VAD was legalised

Thus, the State shining a bright light on end-of-life practices, including VAD, has resulted in improvements.

NVE has also been found to occur in every jurisdiction that’s been studied, VAD law or not, including Australia and New Zealand (Figure 2).

nvecountries.jpg
Figure 2: NVE has been found in every jurisdiction that's been studied

But the Catholic church would have you believe otherwise.

In a recent video, the Catholic Archdiocese of Sydney grotesquely misrepresented a single statistic from the Belgian studies. Using cold colours and the sound of a flatlining heartbeat, the Catholic video claims Belgium’s VAD law has caused its NVE. It’s a chilling confection of innuendo that thumbs its nose at the facts.

The Belgian study the church relies on expressly points out the significant NVE drop, so it’s not like they wouldn’t know.

 belgianstudyreportsdrop.jpg
Figure 3: The study expressly points out the significant drop

It's no wonder that lead scholar of the Belgian research, Assistant Professor Kenneth Chambaere, called the Church’s video “cherry-picked", “a blatant misrepresentation”, “scaremongering” and “appalling”. Professor Chambaere's full response appears below.

Despite the unambiguous evidence, multiple Catholic lobbyists have used cherry-picked NVE rates in a similar way, like:

 
I’ve directly corrected their misleading claims before. Yet here we go again with the same unconscionable nonsense.

Interestingly, at a 2011 Catholic conference, Archbishop Anthony Fisher said:

“the man or woman in the street … may well be open to persuasion that permissive laws … cannot be effectively narrowed to such practices”

and

“we need to research and propose new messages”

Note that the Archbishop proposed... new messages. In his address he didn't propose to examine if his assumed calamities were valid or not.

The Church is entitled to opinions, but promoting misinformation doesn’t seem to be very Christian. The Church should withdraw its grotesque propaganda and apologise.

In conclusion, repeating fake news doesn’t make it true. The fact remains that Belgium’s NVE practice was considerably higher before it legalised VAD, and dropped significantly after.


Prof. Kenneth Chambaere's response in full

On viewing the Catholic Archdiocese of Sydney's video on Belgian NVE, which cites Prof. Chambaere's 2007 study, Prof. Chambaere made the following statement:

13th July 2019
 
Recently, a Vimeo video of the Archdiocese of Sydney on 'Debate on Euthanasia Laws' was brought to my attention: https://vimeo.com/339920133.

As lead author of the cited research, I was appalled at the video's blatant misrepresentation of the robust and honest research that we have been conducting in Belgium. It is quite frankly an insult to us as researchers who day in day out work to generate reliable and trustworthy insights into end-of-life practice in Belgium.
 
It is clear to me that the video has cherry-picked results from our studies to the effect of scaremongering among the public. As researchers, we fully grasp the emotional, ethical and societal gravity of the euthanasia practice and therefore also euthanasia research, and we never take it lightly. We believe we are always as objective and impartial as possible, as is to be expected of independent and free research. This only adds to my duty as a scientist to respond to the video in question and correct its mistakes. The general public and politicians must have access to reliable and correct evidence.
 
First of all, the figures shown in the video do not concern euthanasia practices at all. Euthanasia is by definition always at the explicit request of the patient. What the figures do refer to are physician acts to hasten a dying patient's death without their explicit request, a separate type of end-of-life practice altogether (see further).
 
Secondly, yes, this problematic practice does exist in Belgium. But so does it exist in every other country where anyone has had the audacity to conduct research into it, euthanasia law or no euthanasia law.
 
Thirdly, the incidence of such practices has halved since the euthanasia law was enacted in Belgium.
 
Conclusion: acts of hastening death without explicit request are not a by-product of euthanasia legislation, and if anything, euthanasia legislation seems to decrease the occurrence of these practices. This conclusion features prominently in the paper cited in the video.
 
This practice even exist in Australia, and in significant numbers, according to one (potentially outdated) study. While this study was not identical to ours in Belgium, it still provides clear evidence of its occurrence in Australian end-of-life practice. The authors of the video ask whether Victoria will become like Belgium? If it means diminishing rates of these questionable practices, then surely becoming more like Belgium is a good thing!
 
Lastly, a 2014 detailed analysis in CMAJ Open clarified much about what these cases of hastening death without explicit request entail. I quote our conclusion here: "Most of the cases we studied did not fit the label of "nonvoluntary life-ending" for at least one of the following reasons: the drugs were administered with a focus on symptom control; a hastened death was highly unlikely; or the act was taken in accordance with the patient's previously expressed wishes. Thus, we recommend a more nuanced view of life-ending acts without explicit patient request in the debate on physician-assisted dying."
 
This is not to condone or excuse physicians who engage in such practices, but it is important to know and be clear about what we are focusing our societal discussions on.
 
The question then is, why did the authors of the video overlook these clear conclusions during their extensive review of the evidence? It is very difficult to see how our research could be misrepresented in the way it has been in the video. The research is very clear and it does not support the claims made in the video. I urge anyone relying on the large body of peer-reviewed evidence to analyse it carefully, and if necessary consult with the authors, before communicating to the general public.

Assistant Professor Kenneth Chambaere
End of Life Care Research Group
Vrije Universiteit Brussel
Belgium


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The Catholic Archdiocese of Sydney has released a grotesque and appalling video that blatantly misrepresents Belgium's non-voluntary euthanasia practices as being 'caused' by their voluntary assisted dying law. They're not.

 

Read a more detailed report here.

 

Video narrative

“Belgian scholars have researched the country's non-voluntary euthanasia rate (or NVE) over a number of years.

Their findings unambiguously show that Belgium's NVE rate was much higher BEFORE it legalised voluntary assisted dying (or VAD), and dropped significantly afterwards.

Yet the Catholic Archdiocese of Sydney has released a grotesque video which cherry-picks just the 2007 figure to claim that Belgium's VAD law has caused its NVE practices.

But the NVE drop is no secret: it's expressly stated in the very research the Church cites.

It's no wonder that lead researcher, Assistant Professor Kenneth Chambaere, called the Church’s video “cherry-picked", “a blatant misrepresentation”, “scaremongering” and “appalling”.

The video casts serious doubts over the Church's competence in assessing scholarly evidence, and calls into question its desire to avoid misinformation.

To conclude, Belgium's NVE rate dropped dramatically, and has remained lower, after it legalised voluntary assisted dying.”

 

Visit the YouTube page.

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Branka van der Linden on the "HOPE" website.

HOPE’s Director, Branka van der Linden, is at it again, foisting more misleading information about voluntary assisted dying (VAD) on unwilling members of Parliament. I expose the rot and provide some background on Mrs van der Linden.

Van der Linden’s latest email to all WA MPs states:

Subject: WA Report relies on troubling Belgian study

 
[MP Salutation] --

Did you know that a study showing that one person in Belgium is euthanised every three days without their explicit consent also found that:

  • in more than 77 per cent of cases, the decision was not discussed with the patient;
  • in more than half of cases, the patient had never expressed a desire for their life to be ended; and
  • in more than half of the cases, the reason given was because killing the patient was the wish of the family?

 
Did you know that the WA majority report cited this study as evidence of assisted suicide and euthanasia reducing the incidence of unlawful activity?

Warm regards,

Branka van der Linden
Director, HOPE

 
Van der Linden’s method is to create an impression of calumny against VAD law reform. She uses a nice PR formula of three bullet points per communication. With repetition. It’s a method I expressly warned the WA Parliament to watch out for in my submission to its inquiry. The growing list of emails is now starting to look like ‘harassment’.

So let’s look at van der Linden’s claims — again. She’s talking about non-voluntary euthanasia (NVE) — again.

In her email to MPs, she complains that the WA majority report on end-of-life choices cited the study as evidence of the NVE rate reducing when VAD is legalised.

Well, the WA majority report formed that correct conclusion because that’s precisely what the cited study reported: drops in the NVE rates in both the Netherlands and Belgium after their euthanasia Acts came into effect in 2002.

While concerns ought to be expressed about the deliberate hastening of death without an explicit request from the patient with a view to improving knowledge and practices, it’s not caused by VAD laws as van der Linden desperately tries to imply.

Here are highly relevant things the cited study’s authors had to say, but van der Linden astonishingly ignores:

“The use of life-ending drugs without explicit patient request are not confined to countries where physician-assisted death is legal.”; and

“[NVE’s] occurrence has not risen since the legalisation of euthanasia in Belgium. On the contrary, the rate dropped from 3.2% in 1998 to 1.8% in 2007. In the Netherlands, the rate dropped slightly after legalization, from 0.7% to 0.4%” [The Belgian rate was 1.7% in a more recent replication of the research.]; and

The NVE cases found in the study “in reality resembles more intensified pain alleviation with a ‘double effect’, and death in many cases was not hastened.”

But let’s not let the facts get in the way of a good story. Van der Linden’s recent emails about VAD to MPs reveal astonishing ignorance and a willingness to overlook critical evidence contrary to her position, contained in the very source she cites.

The superficiality of her cherry-picking is kind of embarrassing: she holds an arts/law degree from Australian National University, so you’d expect more intelligent engagement.

It begs the question: who is Branka van der Linden? The “HOPE” website reveals little if anything.
 

Who is Branka van der Linden?

Branka Van der Linden is the current Director of anti-VAD website “HOPE (Preventing euthanasia and assisted suicide)”. HOPE is an initiative of the Australian Family Association, a Catholic lobby group established by Australia’s most famous lay Catholic, B. A. Santamaria.

HOPE’s founding Director and van der Linden’s predecessor, was Mr Paul Russell, the former Senior Officer for Family and Life at the Catholic Archdiocese of Adelaide.

It turns out that Branka van der Linden (née Seselja) is a sister of Catholic ACT Senator Zed Seselja who voted against David Leyonhjelm's recent Restoring Territory Rights (to legislate on VAD) Bill. But there’s more. Far more.

Branka, who attended Catholic St Clair’s College primary school and Padua Catholic High School, both in the ACT, is a “senior lawyer” at the Truth Justice and Healing Council, which provides services to the Australian Catholic Bishop’s Conference and Catholic Religious Australia in relation to the Catholic Church’s response to the Royal Commission into Institutional Responses to Child Sexual Abuse.

She’s advisory legal counsel for the lay Catholic St Vincent de Paul Society Canberra/Goulburn Territory Council. (And good on her for supporting this philanthropic work.)

She and her husband Shawn represent (or at least represented) the Australian Catholic Marriage and Family Council, and were representatives of the Catholic Archdiocese of Canberra & Goulburn on the National Family Pilgrimage to the (Catholic) World Meeting of Families in Philadelphia in 2015.

Husband Shawn has been described by the church as a “loyal Catholic servant” for nine years of service as the director of CatholicLIFE at the Catholic Archdiocese of Canberra and Goulburn.

And as if this weren’t clear enough, a sample of Branka’s Facebook Likes is equally informative:

A sample of Branka van der Linden’s Facebook Likes

  • Archbishop Anthony Fisher (Catholic)
  • Archbishop Samuel J. Aquila (Catholic)
  • Archbishop Mark Coleridge (Catholic)
  • Bishop Robert Barron (Catholic)
  • Marist College Canberra Faith Formation (Catholic)
  • St Thomas the Apostle Kambah (Catholic)
  • Campion College (Catholic)
  • Teaching Catholic Kids
  • Ascension (Catholic Church)
  • CathFamily
  • St Therese of Lixieux (Catholic)
  • Dominican Sisters of Saint Cecilia in Australia (Catholic)
  • Fusion Youth Group (Catholic)
  • St Clare’s College (Catholic)
  • Marist Canberra Football Club (Catholic)
  • Light To The Nations (Catholic)
  • Catholic Voices USA
  • Centre for Faith Enrichment (Catholic)
  • World Meeting of Families 2015 (Catholic)
  • Quidenham Carmelite Monastery (Catholic)
  • Denver Catholic
  • Catholic Mission – Canberra & Goulburn
  • XT3 (Catholic youth association)
  • Missionaries of God’s Love Darwin (Catholic)
  • Marist College Canberra (Catholic)
  • Life, Marriage & Family Office (Catholic)
  • Infant Jesus Parish, Morley (Catholic)
  • MGL Priests and Brothers (Catholic)
  • Catholic Mission – Sydney, Broken Bay, Parramatta
  • Youth Mission Team Australia (Catholic)
  • Summer School of Evangelisation – Bathurst (Catholic)
  • Missionaries of God’s Live Sisters (Catholic)
  • Sisterhood National Catholic Women’s Movement
  • My Family My Faith (Catholic)
  • Catholic Talk
  • The Catholic Weekly
  • The Catholic Leader
  • Mercatornet (Catholic blog site)
  • BioEdge (Catholic blog site)

It’s clear that Branka van der Linden, like her predecessor Paul Russell, is very deeply invested in Catholic tradition. I will be the first to say I firmly believe that is entirely her right.

Yet how curious it is that while repeatedly advancing (secular) misinformation about VAD, Branka van der Linden doesn’t mention her profound religious convictions. It's surprisingly similar to the approach evidenced by Catholic Professor of Ethics, Margaret Somerville; and Catholic (then) Victorian MP Daniel Mulino; and Catholic Editor of The Australian, Paul Kelly (who warmly quotes Mulino); and Catholic director of the Euthanasia Prevention Coalition, Alex Schadenberg...

You get the idea: perhaps there's a pattern?

One possible source of pattern

What was it that the Catholic Archbishop of Sydney, Anthony Fisher, said at the 2011 Catholic Bioethics Conference in relation to opposing the legalisation of VAD?

"The most effective messengers may also vary: bishops, for instance, are not always the best public spokespeople for the Church on such matters."; and

"...the man or woman in the street ... may well be open to persuasion that permissive laws and practices cannot be effectively narrowed to such circumstances"; and

"We need to research and propose new messages also and carefully consider who should deliver them, where and how."

Nowhere in his address does Fisher propose actually testing whether his calamitous assumptions about VAD are true.

Gosh, another coincidence.

Epilogue

I want to be absolutely clear that I am not using a person’s religious conviction as a reason to dismiss their ideas. That’s called an ad hominem attack: an attack against the person rather than the substance of the argument (even assuming it has any substance to assess).

What I have done here and elsewhere, and I will continue to do, is to expose arguments that are false, misleading, illogical or otherwise unmeritorious on the basis of empirical evidence and reasoning.

It just turns out that organised misinformation against VAD law reform comes from deeply religious circles, and those religious circles often avoid mentioning their religiosity while spreading such nonsense under a ‘veneer of secularism’.

It’s in the public’s interest to understand where most organised misinformation against VAD comes from.


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An article in 'Anasthesia' did NOT find high rates of regaining consciousness in contemporary VAD practice.

A recent article by Sinmyee et al, "Legal and ethical implications of defining an optimum means of achieving unconsciousness in assisted dying", published in the journal Anasthesia1 was an attempt to identify a professional standard for inducing and maintaining unconsciousness prior to voluntary assisted dying (VAD) death, a laudable aim.

However, the authors’ underlying premise of contemporary VAD practice failing to reliably maintain unconsciousness — potentially leading to 'inhumane deaths' — is not established by their cited sources. They cite exactly three sources to establish their claim: their citations 31, 32 and 33.

Citation 31 — Iserson et al 1992

This is a qualitative article by Ken Iserson and colleagues.2 Published in 1992, it outlines a single case of assisted suicide, forming the backdrop for several Californian ethics committees to comment.

Not only was this a single case rather tha a sample of dozens or hundreds of cases, but assisted dying was illegal right across the USA in 1992 and earlier. Therefore, the article is wholly uninformative to contemporary practice under assisted dying laws.

Citation 32 — Groenewoud et al 2000

This is a study by Johanna Groenewoud and colleagues.3 Published in 2000, it analyses Dutch data collected between 1990 to 1996 — long before the Netherlands’ 2001 euthanasia Act, which came into effect in 2002.

In 1997 the Dutch medical association (KNMG) formed the Support and Consultation on Euthanasia in Amsterdam (SCEA) network to assist doctors implement the practice more reliably. The successful program was made national (…in the Netherlands, SCEN) in 1999, with a four-year implementation resulting in strong consultation and positive outcomes.4

In addition, the KNMG and Dutch pharmacy association (KNMP) have improved their guidelines for euthanasia practice since 1996: in 1998, 2007 and most recently in 2012.5 Independent studies show that use of opioids (inappropriate method) was high in the Netherlands in 1995-96,6 but replaced entirely with (appropriate) barbiturates and neuromuscular relaxants in reported VAD cases in 2010.7

The most recent published report of the Dutch Euthanasia Commission, which assesses every reported case of VAD, did not note any failures of the VAD procedures.8

Citation 33 — Lalmohamed & Horikx 2010

This is a study by Arief Lalmohamed and Annamieke Horikx, published in 2010, of doctor responses to a survey the KNMP conducted between 2007 and 2009.9 The study reported on issues with the storage, preparation and administration of VAD drugs. It noted that the recommended dose of Thiopental was increased from 1500mg to 2000mg so that patient-dependent dosages need not be calculated.

The study noted one negative experience for some patients: pain on injection of Thiopental. Recommendations were made for preparation and administration of the drug to avoid this problem. No other negative patient outcomes were reported.

The upshot

Thus, of the three sources the authors employed to make the case of a significant and systematic problem in the conduct of contemporary VAD cases, none did so: the first was a single case outside the law in the early 1990s, the second a study from the early to mid 1990s from whence contemporary practice has greatly improved, and the third a 2010 pharmacological investigation that found some patients experiencing pain on injection and recommending improvements to avoid it. Nevertheless, Sinmyee et al concluded that:

“For all these forms of assisted dying, there appears to be a relatively high incidence of vomiting (up to 10%), prolongation of death (up to 7 days), and reawakening from coma (up to 4%), constituting failure of unconsciousness.”

These assertions are highly misleading in regard to contemporary VAD practice.

The most recent Oregon Death With Dignity Act annual report, covering all cases from 1997 to early 2019 reports that just eight of 1,467 deaths where lethal medication was consumed, resulted in the patient regaining consciousness.10 That’s an efficacy rate of 99.5%, a high standard for a medical procedure.

There have been no cases of regaining consciousness in Washington state under their Death With Dignity Act.11

In comparison, regaining consciousness under professional surgical anaesthesia is a problem12 with an incidence rate of around 0.13% in the USA13 though the rate appears to be much lower in the UK.14 Even over-the-counter analgesics like paracetamol, ibuprofen and aspirin have significant adverse effects rates of 14.5%, 13.7% and 18.7% (respectively).15

From unsubstantiated to polemical

While Sinmyee and colleagues were attempting, via their article in Anasthesia, to argue the case for improved VAD practice, it was inevitable that ginger groups opposing the legalisation of VAD would commandeer cherry-picked extracts from the article to further their cause, painting a picture of disaster and mayhem.

Sure enough, the Catholic-backed Euthanasia Prevention Coalition’s Alex Schadenberg ran with it, cherry picking the “190 times higher” rate the authors claim for “failure of unconsciousness” using their invalid citations. Schadenberg conspiratorially concluded that “the laws are designed to cover-up [sic] problems with the law”.16

Also, predictably, Catholic-backed HOPE’s Branka van der Linden followed suit, plucking quotes like “…failure rates of assisted dying by these other methods seems extraordinarily high” without similar context.17

It’s disappointing that the original article with its misleading statistics based on figures plucked from a single historical article and in the absence of considering significant intervening improvements, passed peer review. Its misinformation led to more nonsense being energetically pedalled by anti-VAD campaigners.

 

References

  1. Sinmyee, S, Pandit, VJ, Pascual, JM, Dahan, A, Heidegger, T, Kreienbühl, G, Lubarsky, DA & Pandit, JJ 2019, 'Legal and ethical implications of defining an optimum means of achieving unconsciousness in assisted dying', Anaesthesia, 74(5), pp. 630-637.
  2. Iserson, KV, Rasinski Gregory, D, Christensen, K & Ofstein, MR 1992, 'Willful death and painful decisions: A failed assisted suicide', Cambridge Quarterly of Healthcare Ethics, 1(2), pp. 147-158.
  3. Groenewoud, JH, van der Heide, A, Onwuteaka-Philipsen, B, Willems, DL, van der Maas, PJ & van der Wal, G 2000, 'Clinical problems with the performance of euthanasia and physician-assisted suicide in the Netherlands', New England Journal of Medicine, 342(8), pp. 551-556.
  4. Jansen-Van Der Weide, MC, Onwuteaka-Philipsen, BD & Van Der Wal, G 2004, 'Implementation of the project 'Support and Consultation on Euthanasia in the Netherlands' (SCEN)', Health Policy, 69(3), pp. 365-373.
  5. KNMG/KNMP 2012, Guidelines for the practice of euthanasia and physician-assisted suicide, Utrecht, pp. 56.
  6. van der Maas, PJ, van der Wal, G, Haverkate, I, de Graaff, CL, Kester, JG, Onwuteaka-Philipsen, BD, van der Heide, A, Bosma, JM & Willems, DL 1996, 'Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990-1995', N Engl J Med, 335(22), pp. 1699-705.
  7. Onwuteaka-Philipsen, BD, Brinkman-Stoppelenburg, A, Penning, C, de Jong-Krul, GJF, van Delden, JJM & van der Heide, A 2012, 'Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey', The Lancet, 380(9845), pp. 908-915.
  8. Regional Euthanasia Review Committees (Netherlands) 2018, Annual report 2017, Arnhem, pp. 66.
  9. Lalmohamed, A & Horikx, A 2010, '[Experience with euthanasia since 2007: Analysis of problems with execution] Ervaringen met euthanastica sinds 2007: Onderzoek naar problemen in de uitvoering', Ned Tijdschr Geneeskd, 154(A1983), pp. 1-6.
  10. Oregon Health Authority 2019, Oregon Death With Dignity Act: 2018 data summary, Department of Human Services, Portland, pp. 16.
  11. Washington State Department of Health 2018, Washington State Department of Health 2017 Death with Dignity Act Report, Olympia, WA, pp. 15.
  12. Cook, TM, Andrade, J, Bogod, DG, Hitchman, JM, Jonker, WR, Lucas, N, Mackay, JH, Nimmo, AF, O'Connor, K, O'Sullivan, EP, Paul, RG, Palmer, JH, Plaat, F, Radcliffe, JJ, Sury, MR, Torevell, HE, Wang, M, Hainsworth, J, Pandit, JJ, Royal College of, A, the Association of Anaesthetists of Great, B & Ireland 2014, 'The 5th National Audit Project (NAP5) on accidental awareness during general anaesthesia: patient experiences, human factors, sedation, consent and medicolegal issues', Anaesthesia, 69(10), pp. 1102-16.
  13. Sebel, PS, Bowdle, TA, Ghoneim, MM, Rampil, IJ, Padilla, RE, Gan, TJ & Domino, KB 2004, 'The incidence of awareness during anesthesia: A multicenter United States study', Anesthesia & Analgesia, 99(3), pp. 833-839.
  14. Thomas, G & Cook, TM 2016, 'The United Kingdom National Audit Projects: a narrative review', Southern African Journal of Anaesthesia and Analgesia, 22(2), pp. 38-45.
  15. Moore, N, Ganse, EV, Parc, J-ML, Wall, R, Schneid, H, Farhan, M, Verrière, F & Pelen, F 1999, 'The PAIN Study: Paracetamol, Aspirin and Ibuprofen new tolerability study', Clinical Drug Investigation, 18(2), pp. 89-98.
  16. Schadenberg, A 2019, Assisted dying can cause inhumane deaths, Euthanasia Prevention Coalition, viewed 25 Feb 2019, http://alexschadenberg.blogspot.com/2019/02/assisted-dying-can-cause-inhumane-deaths.html.
  17. van der Linden, B 2019, The "myth" of a pain-free euthanasia death, HOPE, viewed 22 Mar 2019, http://www.noeuthanasia.org.au/the_myth_of_a_pain_free_euthanasia_death.
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Terminal sedation is not an argument against assisted dying law reform.

Opponents of assisted dying often claim that the appropriate response to refractory symptoms at end of life is terminal sedation — also known as palliative sedation or continuous deep sedation.e.g. 1 Terminal sedation is the administration of sedatives so as to render the patient unconscious until death. Thus, the patient’s active experience of suffering is removed, even if the underlying causes of the suffering are not.

Terminal sedation can help in some cases of end-of-life suffering, but it remains a problematic practice — and not a substitute for lawful assisted dying — for eight broad reasons.

1. Directly and foreseeably causing death

Unless the patient is already likely to die of her illness within a few days, it is the withholding of artificial nutrition and hydration during terminal sedation that causes the patient’s death. Lack of fluids causes circulatory collapse and organ failure within 14 days; less if the patient is frail.

In addition, at least one study has found that the terminal sedation medication itself can cause depression of respiration and/or circulation, directly resulting in death in 3.9% of cases.2 Another study purporting to show no survival difference in patients given terminal sedation3 has been exposed as deeply scientifically flawed.4

While opponents of assisted dying usually claim that the intention of terminal sedation is the relief of symptoms and not the hastening of death (their fundamental objection to assisted dying), in practice, terminal sedation can directly and foreseeably cause death.

2. Inapplicable prior to 2–14 days before death

A standard of practice in terminal sedation in many jurisdictions is that it should be used to address refractory symptoms only if the patient’s death is anticipated within hours or days, and in any case less than 14 days.5

However, intolerable and intractable symptoms often occur much earlier, for example amongst those with metastatic cancer where death is still weeks off, or those with a progressive degenerative neurological condition such as motor neuron disease, who may have several months to live.

Thus, terminal sedation is not a practical solution to intractable symptoms in many cases.

3. It doesn’t always help

Palliative Care Australia’s acknowledgement that even best practice can’t always alleviate intolerable suffering at end of life6 is confirmed by a study into terminal sedation practice which found that, in contrast to popular belief that it alleviates (the patients’ conscious awareness of) all suffering, it was ineffective in 17% of cases.7

4. It may violate the patient’s value system

Most calls for terminal sedation as “the answer” to assisted dying law reform focus on the views of the doctor, for whom this is another familiar “intervention”. However, terminal sedation may be unacceptable to the patient.

A patient may deeply believe that being forced to dehydrate to death — unconscious in a bed for a couple of weeks — to be an anathema to her most deeply-held values and sense of self as an active participant in her own life trajectory. This patient may profoundly prefer another route whose equally caused and foreseeable consequence is death: voluntary assisted dying, an option that gives her the chance to say goodbye to loved ones at a time of her own choosing.

5. It extinguishes the patient’s decisional capacity

Rendering the patient unconscious extinguishes her decision-making capacity. The patient can no longer participate in her own treatment decisions unless terminal sedation is ceased, she regains consciousness and becomes aware of her intolerable suffering once more.

6. Doctors’ intention not always clear-cut

When a doctor administers terminal sedation to a patient, the doctor’s intention is not always clear-cut. The doctor may intend to alleviate the patient’s suffering and/or intend to hasten death.

The administration of a single large bolus of sedatives is generally indicative of an intention to hasten death, in which case the doctor in likely to be investigated and prosecuted. However, the administration of increasing doses of sedatives is less clear: significantly increasing titrations of sedatives may be necessary to alleviate intractable symptoms, or they may be an intention to hasten death.

7. Risk of coercion

There is a conceptual risk that greedy relatives, service providers who need the patient’s bed, and others, might inappropriately persuade the patient to opt for a death hastened by terminal sedation, a similar theoretical risk to that in assisted dying.

However, unlike assisted dying which under statutory law is an express, fully informed, independently examined and documented desire and intention to hasten death, there are no statutory requirements in Australia regarding testing of desire, informedness, intention or possible coercion in terminal sedation. This is incoherent.

8. Worse experiences for the bereaved

Studies have found a significant minority of relatives of patients receiving terminal sedation are quite distressed by the experience. Problems causing distress include concern about the patient’s welfare and terminal sedation’s failure to address symptoms, burden of responsibility for making the decision, feeling unprepared for changes in the patient’s condition, short time to the patient’s death and whether terminal sedation had contributed to it, feeling that healthcare workers were insufficiently compassionate, and wondering if another approach would have been better.e.g. 8,9 Periods of longer terminal sedation may be more distressing than shorter periods.10

In contrast, an Oregon study found that the bereaved from assisted deaths appreciate the opportunity to say goodbye, to know that the choice was the deceased’s wish, that the deceased avoided prolonged suffering, that the choice was legal, and they were able to plan and prepare for the death.11

Another Oregon study found that the mental health outcomes of bereaved from assisted deaths were no different from the bereaved from natural deaths.12 Bereaved from assisted deaths were more likely to believe that the dying person’s wishes had been honoured and were less likely to have regrets about the death.

A Swiss study found the rate of complicated grief after assisted death was comparable to the general Swiss population,13[^] while a Dutch study found bereavement coping in cancer was better after assisted death than after non-assisted death.14

Incoherent professional association standards

Neither the Australian Medical Association nor Palliative Care Australia have guidelines for doctors for the practice of terminal sedation.[*] Indeed, even Palliative Care Australia’s carefully reviewed and updated national standards released in late 2018 don’t mention sedation at all.15

In contrast, in countries where assisted dying is now lawful, clear and specific frameworks have been developed to guide the practice of terminal sedation: in the Netherlands,16 Canada,17 and Belgium.18 This deliberative development and implementation points to continued improvement in (not deterioration of) professional medical practice across the board when assisted dying is legal.

Given the profound issues in terminal sedation as in voluntary assisted dying, the failure of the peak Australian medical associations to publish guidelines on terminal sedation, while opposing assisted dying for perceived issues in its implementation, is incoherent and indefensible.

Summary

Palliative and medical care can never address all profound suffering at the end of life, regardless of funding or organisation: some kinds of suffering have no relevant or effective medical interventions, and even terminal sedation may be inapplicable or ineffective. To claim that palliative care is always the answer is a “monstrous arrogance19 and “represents the last vestiges of [medical] paternalism”.20

 

"It is clear that improving palliative care will not remove the need for legalizing assisted dying, and that legalizing assisted dying need not harm palliative care.”21

 

While terminal (palliative) sedation may help a minority of patients, it's a problematic practice that is often not a practical solution to refractory symptoms at end of life.

Terminal sedation is not a substitute for lawful assisted dying choice.


[^]     Slightly elevated levels of PTSD were found amongst the bereaved (compared to the general population), but it was not established whether this would have been different from the trauma of experiencing continued suffering and deterioration or different from PTSD rates of those who had recently lost a loved one by any other means, including terminal sedation.

[*]     Revealed through direct correspondence between myself and the two associations.

 

References

  1. Somerville, M 2009, 'We can always relieve pain', Ottawa Citizen, (24 Jul).
  2. Morita, T, Chinone, Y, Ikenaga, M, Miyoshi, M, Nakaho, T, Nishitateno, K, Sakonji, M, Shima, Y, Suenaga, K, Takigawa, C, Kohara, H, Tani, K, Kawamura, Y, Matsubara, T, Watanabe, A, Yagi, Y, Sasaki, T, Higuchi, A, Kimura, H, Abo, H, Ozawa, T, Kizawa, Y, Uchitomi, Y, Japan Pain, PMR & Psycho-Oncology Study, G 2005, 'Efficacy and safety of palliative sedation therapy: a multicenter, prospective, observational study conducted on specialized palliative care units in Japan', J Pain Symptom Manage, 30(4), pp. 320-8.
  3. 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.
  4. Francis, N 2016, How bad research fuels dodgy claims, DyingForChoice.com, viewed 11 Mar 2016, http://www.dyingforchoice.com/f-files/how-bad-research-fuels-dodgy-claims.
  5. Twycross, R 2019, 'Reflections on palliative sedation', Palliative care, 12, pp. 1-16.
  6. Palliative Care Australia 2006, Policy statement on voluntary euthanasia, Canberra, pp. 2.
  7. Davis, MP 2009, 'Does palliative sedation always relieve symptoms?', Journal of Palliative Medicine, 12(10), pp. 875-877.
  8. Morita, T, Ikenaga, M, Adachi, I, Narabayashi, I, Kizawa, Y, Honke, Y, Kohara, H, Mukaiyama, T, Akechi, T & Uchitomi, Y 2004, 'Family experience with palliative sedation therapy for terminally ill cancer patients', Journal of Pain and Symptom Management, 28(6), pp. 557-565.
  9. Bruinsma, SM, Brown, J, van der Heide, A, Deliens, L, Anquinet, L, Payne, SA, Seymour, JE, Rietjens, JAC & on behalf of, U 2014, 'Making sense of continuous sedation in end-of-life care for cancer patients: an interview study with bereaved relatives in three European countries', Supportive Care in Cancer, 22(12), pp. 3243-3252.
  10. van Dooren, S, van Veluw, HT, van Zuylen, L, Rietjens, JA, Passchier, J & van der Rijt, CC 2009, 'Exploration of concerns of relatives during continuous palliative sedation of their family members with cancer', J Pain Symptom Manage, 38(3), pp. 452-459.
  11. Srinivasan, EG 2009, Bereavement experiences following a death under Oregon's Death With Dignity Act, Human Development and Family Studies, Oregon State University, pp. 127.
  12. Ganzini, L, Goy, ER, Dobscha, SK & Prigerson, H 2009, 'Mental health outcomes of family members of Oregonians who request physician aid in dying', J Pain Symptom Manage, 38(6), pp. 807-15.
  13. Wagner, B, Müller, J & Maercker, A 2012, 'Death by request in Switzerland: Posttraumatic stress disorder and complicated grief after witnessing assisted suicide', European Psychiatry, 27(7), pp. 542-546.
  14. Swarte, NB, van der Lee, ML, van der Bom, JG, van den Bout, J & Heintz, AP 2003, 'Effects of euthanasia on the bereaved family and friends: a cross sectional study', British Medical Journal, 327(7408), pp. 189-192.
  15. Palliative Care Australia 2018, National Palliative Care Standards, Griffith ACT, pp. 44.
  16. Verkerk, M, van Wijlick, E, Legemaate, J & de Graeff, A 2007, 'A national guideline for palliative sedation in the Netherlands', J Pain Symptom Manage, 34(6), pp. 666-70.
  17. Dean, MM, Cellarius, V, Henry, B, Oneschuk, D & Librach, LS 2012, 'Framework for continuous palliative sedation therapy in Canada', J Palliat Med, 15(8), pp. 870-9.
  18. Broeckaert, B, Mullie, A, Gielen, J, Desmet, M, Declerck, D, Vanden Berghe, P & FPZV Ethics Steering Group 2012, Palliative sedation guidelines, Federatie Palliatieve Zorg Vlaanderen, viewed 18 Sep 2015, http://www.pallialine.be/template.asp?f=rl_palliatieve_sedatie.htm.
  19. Hain, RDW 2014, 'Euthanasia: 10 myths', Archives of Disease in Childhood, 99(9), pp. 798-799.
  20. Horne, DC 2014, 'Re: Why the Assisted Dying Bill should become law in England and Wales', BMJ, 349, p. g4349/rr/759847.
  21. Downar, J, Boisvert, M & Smith, D 2014, 'Re: Why the Assisted Dying Bill should become law in England and Wales [response]', BMJ, 349, p. g4349/rr/760260.
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'HOPE' is pedalling assisted dying misinformation to politicians again.

The Catholic-backed anti-assisted-dying ginger group, HOPE, was represented for years by Paul Russell. He's retired and Branka van der Linden is now at the helm. But its penchant for pedaling egregious misinformation hasn't changed. Van der Linden recently sent an email to all WA members of parliament, containing three points.

Van der Linden's email reads:

 

Dear [MP salutation],

Did you know that the WA majority report that recommended assisted suicide for WA either dismissed or failed to report on the following statistics?

  • In the Netherlands in 2015, 431 people were euthanised without their explicit consent.
  • In Belgium, 8 per cent of all deaths were without explicit consent from the patient.
  • In Oregon in 2017, the ingestion status of 44 (out of 218) patients was ‘unknown’, making it impossible to ascertain if these 44 patients ended their lives voluntarily and without coercion.

Yours faithfully,

Branka van der Linden

Director, HOPE

 

The trouble is, all three claims by van der Linden are either directly false or egregiously misleading. Here are the actual facts:

FACT: Peer-reviewed scientific research shows that the non-voluntary euthanasia rate of both the Netherlands and Belgium has dropped significantly since their assisted dying Acts came into effect in 2002, consistent with more careful end-of-life decision making across the board.

Fiction 1: van der Linden improperly cherry-picked a single year’s statistic for each country (and, incoherently, a raw count for one but a percentage for the other), implying that lawful voluntary euthanasia increases non-voluntary euthanasia, when the opposite is true.

Fiction 2: van der Linden claimed Belgium’s non-voluntary euthanasia rate is 8%. It has never been anywhere near that figure: the most recent figure is 1.7% and it was 3.2% before Belgium’s euthanasia law.

FACT: Oregon’s health department actively matches death certificates with prescriptions issued for assisted dying. At any time some prescriptions have not been taken and the person may still be alive, and for the deceased, death certificates are still being processed. This naturally means that some prescription/death statuses will temporarily be ‘unknown’ to authorities, even though they will be later determined.

Fiction 3: van der Linden comically implies that this proper process is sinister.

It's curious how 'HOPE' likes to repeatedly demonstrate how HOPElessly uninformed it is about the actual facts and that its methods include cherry-picking data which it thinks supports its anti-assisted dying case, but which don't.

Western Australians deserve better than HOPE's silly propaganda campaign.


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A forensic analysis exposes Theo Boer's smoke and mirrors on 'suicide contagion'

In my most recent article in the Journal of Assisted Dying, I forensically analyse Dutch ethicist Professor Theo Boer’s 2017 paper purporting to find suicide contagion from assisted dying in the Netherlands. It doesn’t go well for Professor Boer, to put it mildly. You can find the full article here.

I also find an astonishing coincidence that occurred in 2014, the year Boer went feral against the Dutch euthanasia law.

Multiple fatal flaws

In the ‘analysis’ outlined in his article, Boer commits a number of fatal scientific no-noes, including failing to analyse the variable he actually surmised might cause suicide contagion, cherry-picking data that supported his conclusion while ignoring or offhandedly dismissing data at odds with his conclusion, and wrongly forming a causative conclusion from a simple correlation while failing to control for any confounding variables of which there are many.

A litany of scientific offences

In addition to the fatal flaws, Boer’s article contains numerous other scientific and academic offences. My forensic analysis concludes:

“In summary, Boer’s article contains a litany of scientific and scholarly failures. Its speculations are ill-informed, poorly-assembled, incoherent in places and mostly uncited, the data cherry-picked and invalidly interpreted, and the laissez faire methodology incapable of validly supporting its conclusion.
 

Boer conjures up mere smoke and mirrors to argue suicide contagion from VAD in the Netherlands. The article should be retracted.”

The article also reflects badly on the journal that published this smoke and mirrors: the Journal of Ethics in Mental Health. Neither peer review nor editorial effort identified or attempted to correct any of the nonsense in the article.

What was he thinking?

Professor Boer is an expert in Reformist Protestant theology. As a religious ethicist, it’s astonishing that he considered himself suited to conducting and publishing a ‘causative’ scientific study.

In his article, Boer proposed VAD as the only factor to contribute to changes in the Netherlands’ general suicide rate (and dismissed the Belgian data which contradicted his theory).

In reality, numerous risk and protective factors affect the suicide rate, and in the Netherlands as I’ve established using their official government data, just one factor — unemployment — explains 80% of the variance in the Dutch suicide rate since 1960. Boer casually dismisses this without providing the faintest fume of an empirical analysis himself.

Boer’s article did little but amply demonstrate his underlying anchoring and confirmation bias on the subject, his unfamiliarity with the complexity of suicide, and ignorance of proper scientific principles.

For good measure, he casually threw in a comment about “suicide contagion” or copycat suicides, without understanding that in suicide, copying is the method of causing death. But by definition, general suiciders don’t follow the provisions of the euthanasia Act.

His endeavour made as little sense as me writing a conclusive article about Reformist Protestant theology, about which I know very little.

A copycat analysis?

Coincidentally, the structure of the storyline, the litany of scientific offences committed, and the conclusions reached in Boer’s article were surprisingly similar to those in an ‘analysis’ of Oregon’s suicide rate in another paper by Jones and Paton. Like Boer, Jones and Paton start out by surmising that assisted dying ought to lower the general suicide rate, and conclude the opposite.

Boer approvingly cites the Jones and Paton article, even though a forensic analysis found no fewer than ten major scientific flaws in it and provided multiple sources of empirical evidence at odds with the article’s conclusions.

But Boer manages to cock even the citation up, referring to the article’s authors as Holmes and Paton.

Will the real Theo Boer please stand up?

Boer notes that he’s always been a euthanasia sceptic. Nevertheless, as a Reformist Protestant, he had long accepted assisted dying in “emergency” situations, of which intolerable and otherwise unrelievable suffering is a ‘qualifying’ criterion, and which is the substance of the Dutch euthanasia law (it’s regarded in legal circles as a law of “necessity”). He also opined that the Dutch model was a decent one that other jurisdictions could emulate.

Boer served as the ethicist member of one of the five Dutch euthanasia review commissions, examining every case reported to it between 2005 and 2014.

In 2014 he publicly quit his post on the review committee, slamming the Dutch assisted dying system. He’s been badmouthing it to anyone who will listen, since.

In preparation for this analysis, I asked Boer if his vocal opposition to the Dutch assisted dying model was now based on an in-principle opposition to assisted dying, or only in regard to more recent practice under the Dutch euthanasia Act. Despite a couple of iterations, I didn’t get a specific answer.

The law hasn’t changed

Here’s the point. While Boer repeatedly opines that things changed radically in the Netherlands around 2007, the country’s euthanasia Act hasn’t changed since it was passed in 2001 (and came into effect in 2002). Not. One. Word.

In addition, the Dutch Supreme Court determined in 1994 that individuals with mental (in the absence of concomitant physical) illness could qualify under the then regulatory euthanasia framework, and it was found that cases occurred every year.

And the 2001 Act formalised in statute the regulatory framework that had existed since at least 1984, when the Dutch medical association first published guidelines for euthanasia.

Thus, the Act reflects very long-standing practice, and it hasn’t changed since it was enacted, in contrast to Boer’s claim that things have radically changed.

Flimsy and incoherent ‘ethics’ part 1

This brings us to the first fatal incoherence of Boer’s “ethics”: that he now opposes the law because people with psychiatric illness and other conditions are, in slightly increasing numbers, availing themselves of the euthanasia law. It is these cases against which Boer rails, despite having previously said the Dutch model is a good example for the world, and having actively participated in the system.

Boer’s flip flop is to argue that a law that permits assisted dying under a range of medical conditions (and has done so for decades) is a good law, provided some of those who might qualify (like psychiatric cases) never use it.

Try and explain the ethics behind that position.

Flimsy and incoherent ‘ethics’ part 2

The second fatal incoherence of Boer’s ‘ethics’ is his repeated complaint that until around 2007, the numbers of euthanasia cases was “somewhat steady”, but increased after that. Never mind that the majority of the increase was still in relation to terminal cancer: Boer simply railed at the increased numbers as a major problem.

But, try and explain using ethical principles, why it is appropriate for 2,000 people a year to avail themselves of the euthanasia law, but inappropriate for 4,000 (who all qualify)?

Indeed, the Dutch euthanasia Act makes no mention of numbers: there is no legislated limit on the count of people who might choose to use the law. Rather, it is based on due care criteria, outlining the circumstances of who may qualify, and the process by which they may.

The legislature’s intent remains unchanged and is still being adhered to, though more people, the majority of whom have terminal cancer, are using the law.

It’s astonishing that a Professor of Ethics fails to reflect on the fatal incoherence of his own ‘ethical’ arguments.

What happened?

Boer, who had supported and promoted the Dutch euthanasia model suddenly and incoherently changed his position to vocally opposed in 2014. What happened?

One factor might shed some light. In 2014, Boer was appointed to the endowed professorship of Lindeboom Chair in Ethics in Healthcare at Kampen Theological University.

While Kampen Theological University is a Dutch Reformist Protestant institution and therefore may support assisted dying in “emergency” cases, the Lindeboom Institute, which endows Boer’s eponymous professorship, is less understanding.

The Lindeboom Institute was co-founded by several orthodox Christian institutions and cooperates with the Netherlands Evangelical University which studies science from an creationist Biblical perspective.

The Institute demands “biblically sound medical ethics” along with “Christian norms and values”. You’d be left wondering what that actually means, until you find on its website that the Board’s role is “the protection of people at all stages of life”.

In addition, participating organisations that fund the Lindeboom endowment, like the Dutch Patients Association, Pro Life Health Insurance and the Foundation for Christian Philosophy, are strongly opposed to assisted dying in any form.

It turns out that the authors of that other ‘analysis’ that commits numerous similar scientific offences which generate smoke and mirrors, Jones and Paton, are devout conservative Catholics.

Gosh. What a coincidence.


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Jones, Paton and Kheriaty's articles demonstrate poor science and multiple, egregious instances of bias.

In 2015, Dr David Jones and Prof. David Paton published an article titled “How does legalization of physician-assisted suicide affect rates of suicide?” in the Southern Medical Journal. The article purported to establish suicide contagion from Oregon and Washington Death With Dignity Act (DWDA) deaths to “total suicides.”  It also purported to establish no decrease in general suicide rates, which Jones & Paton argued should occur by substitution of assisted death for some general suicides. (Notice how these two ‘expected’ results — an anticipated rise and an anticipated fall in suicide rates — are at odds in principle.)

In my thorough and empirically-backed response, I expose the disgraceful playbook of these authors as they shambolically commit no fewer than ten deadly sins against science in the pursuit of their opposition to lawful assisted dying.

Get the full report here

Executive Summary

In 2015, Dr David Jones & Prof. David Paton published an article in the Southern Medical Journal titled “How does legalization of physician-assisted suicide affect rates of suicide?” This study examines the article, as well as an enthusiastic editorial of it by Dr Aaron Kheriaty in the same journal issue, both of which portray “suicide contagion” from Oregon and Washington’s death with dignity acts (DWDA).

However, while contagion from general suicides is a well-established phenomenon, there are multiple sound reasons to reject contagion theory in relation to assisted deaths, including:

  • Most healthcare professionals readily acknowledge key differences in the characteristics of assisted deaths: for example, a fully informed, tested and rational decision with shared decision-making.
  • Those using Oregon and Washington’s DWDAs are, by qualifying for it, already actively dying. Thus, they are choosing between two ways of dying rather than between living and dying.
  • Most of those using the DWDA discuss it with their families (expected, peaceful death), whereas most general suicides occur in isolation and without discussion (unexpected, often violent death).
  • Multiple studies show that while families of general suicide experience complicated bereavement, families of assisted dying cope at least as well as, and in some cases better than, the general population or those who considered but did not pursue assisted death.

 
Even if “suicide contagion from assisted dying” theory were sound, direct evidence from official government sources shows that the number of potential suicides in Oregon in 2014 would have been fewer than 2 in 855 cases: undetectable by general modelling methods.

Jones & Paton’s article title conveys an air of skilled and scientific neutrality. However, close examination of the article, and Kheriaty’s editorialisation of it, reveals least ten serious flaws or ‘scientific sins.’

The authors demonstrated little understanding of the complex issues surrounding suicide, willingness to unjustifiably equate assisted dying with general suicide, contentment with failing to search for, consider or include contrary evidence including from sources they cite to argue their case, unreasonable trust in a model that couldn’t hope to legitimately resolve their premises, satisfaction with executing their model amateurishly, a disposition to overstate confidence of causation in the absence of meaningful statistical correlations, and an inclination for emphasising results in accordance with their theories while de-emphasising or ignoring others.

Any of these flaws was serious enough to invalidate Jones & Paton’s article and Kheriaty’s conclusions of it, yet there is not one deadly flaw: there are at least ten.

Their claim of a supposed 6.3% suicide contagion rate from assisted dying in Oregon and Washington is a conceptual and mathematical farce.

The Southern Medical Journal is a peer-reviewed journal. However, it is difficult to reconcile the rigorous standards and sound reputation that peer review is intended to maintain, with the numerous, egregious flaws in this study and its dissemination.

Rather than inform the ongoing conversation about lawful assisted dying, the Jones & Paton and Kheriaty articles misinform and inflame it.

Given the numerous egregious flaws, both articles ought to be retracted.

 

Get the full report here

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Patricia Flowers calls Margaret Somerville's arugments 'bullshit' on national television. Photo: ABC

Last week, Mr Xavier Symons published a defence of Professor Margaret Somerville, whose arguments against assisted dying were called ‘bullshit’ by Patricia Flowers on the ABC’s Q&A program. Symons and Somerville are colleagues at the Institute for Ethics and Society at the Catholic Notre Dame University of Australia.

Mr Symons made an important point: that a law about restricted self-choice for assisted dying is in no way comparable to the Nazi Germany euthanasia (or more correctly, eugenics) programme. While Prof. Somerville agrees that such comparisons are invalid, she nevertheless often mentions Nazi Germany as a ‘question’ when debating assisted dying. That’s a bit of a fudge.

And Mr Symons, in his defence of Prof. Somerville, offers some fudges of his own. While Dr Iain Brassington has offered a cool philosophical examination of Mr Symons’ opinion piece in a Journal of Medical Ethics blog, I’ll provide more of an evidential analysis.

Wrong on Dutch law and practice

Mr Symons said that euthanasia was legalised in the Netherlands in 2002. While technically that may be true, it's misleading. Assisted dying was actually made lawful in the Netherlands in 1982, after considerable debate and a number of court cases, when the Board of Procurators-General (the highest prosecutorial authority) formalised a set of conditions under which doctors would not be prosecuted for helping a patient die.

In practice, wider physician participation commenced in 1984 when the Royal Dutch Medical Association (KNMG) issued its own guidelines for clinical practice, based on the Procurators-General ruling, and grew to more than a thousand cases a year by the late 1990s.

It was in 2002 — when the Termination of Life on Request and Assisted Suicide (Review Procedures) Act came into effect — that the Dutch law on assisted dying changed from regulatory to statutory.

Mr Symons also claimed that since 2002, the “Dutch legislation [has] changed several times.” That’s not true: in fact, not one word of the Act has changed since it came into effect.

Nor has there been a “steady rate of increase” in the Dutch assisted death rate since 2002 “even when there was no legislative change” as he claimed. There has been an increase, but far from ‘steady.’ Rather, it’s a sigmoid (stretched-S) curve with very little initial increase, then increasing, and then levelling out again. It’s a pattern typical of human behaviour adoption, and has occurred in both Belgium and the Netherlands.

Selective Euro-evidence

Mr Symons also claimed “significant evidence from Belgium, Netherlands, Luxembourg” for his argued slippery slope. Yet he quotes percentages for only the Netherlands, correctly noting that assisted deaths increased from 1.3% of all deaths in 2002 to 3.7% in 2015.

Mr Symons doesn’t mention that:

  • the Dutch assisted dying rate was lower for a number of years after 2002 than before — as physicians and the public were still getting to grips with the new Act;
  • the Netherlands’ assisted dying rate dropped between 2014 and 2015;
  • the rate in Belgium (1.8% in 2015) is half the Netherlands’;
  • the rate in the Flanders (Dutch) north of Belgium (2.5% in 2015) is higher than in the Wallonia (French) south (0.87%), suggesting that higher rates may be a characteristic of Dutch culture;
  • the rate in Luxembourg, with very similar legislation, is a tiny one twentieth of the Dutch rate — 0.18% in 2014 (the most recent year of available data); or that
  • there is no evidence to date of the rate increasing in Luxembourg.
     

Selective North American evidence

While Mr Symons reports the Dutch rate as a percentage of all deaths, he reports his only other figures (for Oregon) as raw counts: rising from 16 in 1998 (before which assisted dying was entirely illegal) to 132 in 2015. (Actually, the final figure for 2015 was 135 cases.) What he fails to mention is that the Oregon rate in 2015 was 0.38% of all deaths, just one tenth of the Dutch rate. That is, the percentage is far less ‘impressive’ to his thesis and raises questions about ‘inevitable slippery slopes.’

The increase is hardly surprising given that when conduct is made newly lawful, only a few people might pursue it in its first year, with more people pursuing it seventeen years later. Even then, one hundred and thirty-five cases out of nearly thirty-six thousand deaths is hardly a “normalisation,” as Mr Symons argues.

He also argues that Quebec’s initial figures are “alarming,” without reporting the rate as a percentage of all deaths. Data from the first year (2015–16) indicates a rate of 0.74%, slightly lower than French-speaking Wallonia in 2015 (0.87%). (Half-way through the 2015–16 period, Canada’s Federal Parliament also passed an assisted dying law.)

The latest comparative data

The latest data on assisted death rates in Benelux and North America is shown in Figure 1. As I explain in one of the most detailed comparative analyses of lawful assisted dying practice conducted to date, it is likely that the higher rates are associated with Dutch culture.

adrates7jurisdictions.gifFigure 1: Assisted dying in Benelux and North America as a percentage of all deaths

Notes: Dutch cultures appear in orange. Flanders is the northern Dutch, and Wallonia the southern French, ‘half’ of Belgium.
Sources: Government statistics offices and assisted dying authority reports; Quebec, CBC News

The case of Vermont

In the USA state of Vermont (with an Oregon-like Act since 2013), a small number of people (38) have been prescribed lethal medication in the first three years. (Data is not available by year.) Assuming for the sake of argument that all of them took the medication (while Oregon and Washington data indicates that a third or more don’t), that would equate to an assisted dying rate of around 0.27% of all deaths as an annual average for 2013­–15.

Don’t mention Switzerland

Switzerland is perhaps the most ‘inconvenient’ case for slippery slope hypotheses, which might explain why assisted dying opponents usually avoid mentioning it. It has the world’s oldest assisted suicide law, in effect since 1942. It is also the least prescriptive: the only specific statutory requirement is that any assistance rendered must not be for reasons of self-interest. That’s it.

Surely a law in effect for 73 years and devoid of all the complex requirements of others would be the foundation for an out-of-control assisted dying rate, much higher than the Netherlands at 3.7%?

It isn’t. In 2015, the rate for Swiss-resident assisted deaths was 1.4%. The rate including foreigners — in other words, with a global population of potential ‘slippery slope candidates’ — was 1.7%. That’s less than half the Dutch rate.

Conclusion

To summarise, the lawful assisted dying rate varies widely between cultures, currently by a factor of twenty. Yet there’s one thing consistent amongst them all: the most common reason for pursuing an assisted death is advanced cancer.

Ultimately, the only thing Mr Symons’ argument establishes is that he prefers to negatively describe any use of a law of which he disapproves as “normalisation,” regardless of its usage rate. If this were not true it would be incumbent on him to nominate a non-zero assisted dying rate that he thinks acceptable, but not “normalised.”

To be sure, I agree with Mr Symons that it’s important to “review the hard facts” around assisted dying.

And yet, when he promised the reader that his “valid slippery slope” argument would be based on “compelling empirical” evidence, he made incorrect or misleading statements, provided cherry-picked morsels of data, and wrapped it all up in a loaded assumption. I think that Patricia Flowers would call that ‘bullshit.’


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Update: Margaret Somerville is now Professor of Ethics at the Catholic University of Notre Dame Australia.

In the previous video a claim by Catholic Professor of Ethics Margaret Somerville was rebutted: that the Dutch and Belgians seek health care in Germany because they fear being killed by their own doctors and without being asked. In this video, she furthers her bizarre claim by referring to Dutch and Belgian non-voluntary euthanasia rates as 'proof' of her border-crossing healthcare thesis.

However, her cherry-picked statistic establishes nothing, whereas her claim is contradicted by robust research, which I discuss in this video.

It's unclear why Professor Somerville seems to be unaware of or ignores readily-available yet contradictory evidence of central importance to her claim.

This 'non-voluntary slippery slope' claim is another one that's popular amongst campaigners against assisted dying.

 

Transcript

Neil Francis: In the last video, we established as false, Professor Margaret Somerville’s absurd claim of the Dutch going to Germany for health care because they feared being killed by their doctors. But she goes on.

Margaret Somerville: In actual fact they’ve got good reason to fear that, uh, there’s a minimum of, a minimum of 500 cases a year, of doctors who administer euthanasia to people in the Netherlands, where it’s legal, and the patient does not know they’re being given euthanasia, and has not consented to it. Some reports put the figure as high as 2000 cases a year.

Neil Francis: And she makes a similar case for Belgium. So let’s look at the empirical evidence.

Neil Francis: What she’s referring to is non-voluntary euthanasia, or NVE. It occurs in every jurisdiction around the world. A study published in 2003 found these rates. You’ll notice that Italy had the lowest and Belgium the highest NVE rates. And at the time of this study, which countries had legalised assisted dying?

Neil Francis: Switzerland had since 1942, and the Netherlands since 1982. But none of the others had. So the Swiss and Dutch NVE rates, with assisted dying laws, were lower than Denmark’s, without one. And the higher Belgian rate wasn’t caused by an assisted dying law, because none existed at the time.

Neil Francis: But did the Belgian and Dutch NVE rates go up when each country legalised assisted dying by statute in 2002? Here’s what happened in Belgium: the rate didn’t go up — it went down, and the drop is highly statistically significant.

Neil Francis: And in the time since Professor Somerville made her misleading claim, it’s remained lower.

Neil Francis: And here’s what happened in the Netherlands. This rate before the Act is around 1,000 cases a year, and this one after the Act is around 500, the rate that Professor Somerville refers to in her claim as “the minimum”. What she failed to mention is that since statutory legalisation of assisted dying, the Dutch NVE rate dropped, not risen, and to a similar level as the UK, the world’s gold standard for palliative care, and which has never had an assisted dying law.

Neil Francis: And since Professor Somerville made her misleading claim, it’s dropped even further.

Neil Francis: If Professor believes that she has verifiable empirical evidence to back up her claims, let her produce it for examination. Until then, her non-voluntary euthanasia “slippery slope ”is nothing more than fear-mongering innuendo.

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