Assisted dying (AD)

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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 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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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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The Belgian Euthanasia Commission has released its summary report for 2018

Belgium's Federal Commission for Control and Evaluation of Euthanasia has released a summary report of cases for the 2018 calendar year. Numbers have stabilised, with a tiny 1.8% increase on the figures for the previous year. All cases were found to have met the essential conditions of the Euthanasia Act. Below is an English translation of the report.

Belgium Euthanasia - Figures for the year 2018

By Jan Eyckmans
Posted on 28/02/2019

These figures relate to the registration documents for euthanasia carried out between 1 January 2018 and 31 December 2018 examined by the Commission. A more detailed analysis of euthanasia reported in 2018 will be made in the next biennial report of the Commission (gathering data for 2018 and 2019).

The number of reports received during this period was 2357. The majority were written in Dutch, concerned patients aged 60 to 89 years and slightly more women. Most often, euthanasia took place at home.

The main conditions causing the euthanasia claims were either cancers or a combination of several conditions (polypathologies) that were not likely to improve and that caused more and more serious disabilities up to organ failure. Death of patients was usually expected in the near future. Patients whose death is clearly not expected in the short term suffered mostly from polypathologies, while the death of cancer patients is rarely considered such.

Requests for euthanasia on the basis of mental disorders and behavior remain marginal (2.4% of all euthanasia). Like all euthanasia records, they comply with the legal requirements (patient capable, written request, medical situation without solution, constant suffering, intolerable and unbearable, caused by a serious and incurable condition, application and repeated request).

No euthanasia of unemancipated minors was recorded in 2018.

The Commission considered that all the declarations received met the essential conditions of the law and none were transmitted to the public prosecutor.

Detailed figures

The number of reports received in 2018 was 2357. The number of recorded euthanasia remained stable (only 1.8% increase).

The number of registration documents in French continues to increase (76% NL / 24% FR).

67.1% of the patients were older than 70 years and 41% were over 80 years old. Euthanasia in patients under 40 remains very limited (1.7%). It is mainly patients in the 60, 70, and 80 age groups who request euthanasia (75.8%). The largest group of patients is between 80 and 89 years old (29.9%).

In 2018, no statement regarding the euthanasia of minors was recorded.

The number of euthanasia in the home (46.8%) is still increasing, while those in the hospital are still decreasing (36.1%). The number of euthanasia in nursing homes and nursing homes continues to increase (14.3%). This corresponds to the patient's wish to end his life at home.

In the vast majority of cases (85.4%), the physician estimated that patient deaths were predictable in the near future.

For the majority of patients, several types of physical and psychological suffering (not to be confused with psychiatric conditions) were observed simultaneously (78.7%). These sufferings were always the consequence of one or more serious and incurable conditions.

Less than 1% of euthanasia involved unconscious patients who made an advance declaration.

The conditions causing the euthanasia were mostly tumours (cancers) (61.4%), polypathologies (18.6%), diseases of the nervous system (8.3%), circulatory system diseases. (3.8%), diseases of the respiratory system (2.4%) and mental and behavioural disorders (2.4%).

Press contacts

• Jacqueline Herremans, lawyer
+32 (0) 2 648 75 30
+32 (0) 475 74 40 92
jacqueline.herremans@lallemand-legros.be

• Michèle Morret-Rauïs, oncologist
+32 (0) 475 40 41 22
morret.rauis@gmail.com

Related documents:

 

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The original document in French is available here.


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Victoria has shown what happens at the ballot box to candidates who oppose VAD

Many news outlets are reporting that Victoria's voluntary assisted dying (VAD) Act comes into effect mid-year, and how other Parliaments around the country are likely to implement similar reforms. Moves are afoot in Western Australia, Queensland, NSW and Tasmania, with other jurisdictions to follow. Marshall Perron, former Chief Minister of the Northern Territory and architect of the first VAD law in Australia, has penned a media release to highlight how VAD influenced the Victorian election. The result wasn't pretty for opponents of VAD law reform.

Media release - Marshall Perron

Parliamentarians traditionally shy away from supporting voluntary assisted dying (VAD), believing it is politically toxic to do so. Victoria, under the Andrews government, has changed all that by showing the opposite to be true.

After legislating VAD – Victoria is the first Australian state to do so – Andrews won a thumping victory at the 2018 Victoria State election.

Former NT Chief Minister Marshall Perron said there is a common perception that the political class has not been listening to its constituents. VAD is a classic example.

There were multiple reasons for Victoria’s election result, and VAD was clearly one of them. With unprecedented 80-85% public support, it should be no surprise that Victorian candidates who supported VAD polled more strongly.

In the previous parliament, almost all Liberal members voted against the VAD legislation. The party suffered an average 6.04% swing against it in the State election.

In addition, two of the staunchest Liberal opponents of the VAD bill lost their seats. In the lower house, Robert Clark was tossed out as the Member for Box Hill, a seat he’d comfortably held for a quarter century. In the upper house, Inga Peulich was rejected by voters in South Eastern Metropolitan, a Region she’d represented for three terms.

Dying With Dignity Victoria and Andrew Denton ran targeted campaigns focusing on four electorates – Burwood, Albert Park, Bentleigh and Prahran.  They used Robo calls, advertising, social media and face to face meetings to inform voters about where their candidates stood on VAD.

The Liberal candidates (one a sitting member) in these four electorates all opposed VAD. They suffered an average 10.1% drop in primary votes compared with the average drop in the Liberal vote overall of 6.04%.

The Liberal sitting member lost his seat. In the other three seats the sitting Labor and Greens members, who all supported VAD, were returned with significantly increased votes. The results for these four electorates were, compared to the 2014 election:

  • In Burwood, Liberal member Grahame Watt lost his seat with a 6.47% swing against. Labor candidate and VAD supporter Will Fowles was elected.
  • In Albert Park, Labor member and VAD supporter Martin Foley was returned with a massive 10.17% increase (two party preferred). The Liberal primary vote dropped 10.24%.
  • In Bentleigh, Labor member and VAD supporter Nick Staikos was returned with a massive 11.27% increase. The Liberal primary vote dropped 12.59%.
  • In Prahran, Greens member and VAD supporter Sam Hibbens was returned with a 7.0% increase. The Liberal vote dropped 10.29%.
     

Mr Perron, who introduced the world’s first successful VAD legislation in the Northern Territory in 1995 said candidates can increasingly expect to lose support when they ignore the wishes of the voters they seek to represent.

In a contest tighter than the Victorian election turned out to be, a handful of seats retained or lost on VAD could determine the outcome.

Marshall Perron


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The Canadian Medical Association (CMA) has quit the World Medical Association (WMA) over assisted dying and plagiarism.

The WMA has long held that assisted dying is unethical and must be condemned by the medical profession, despite a significant proportion of contemporary doctors believing it to be a valid and ethical option in restricted circumstances.

Assisted dying is lawful in Canada, where it is called Medical Assistance in Dying (MAiD).

The CMA has resigned from the WMA, citing a bad case of plagiarism by the current WMA head, but also reporting its considerable displeasure with the WMA's one-sided policy on MAiD.

This is the first example of a member medical society resigning from the WMA in part due to its assisted dying policy, and speaks volumes about medicine's slow but inevitable move to recognise patient well as doctor moral perspectives.

Predictably, Dr Kulvinder Gill (AKA Kulvinder Kaur) from tiny ginger group “Concerned Ontario Doctors”,1 which is strongly opposed to Canada's asssited dying law, slammed the CMA's resignation, claiming that the withdrawal leaves Canada's doctors "without international ethical oversight."

It's shabby framing to impute that Canadian doctors can't practice ethically without some kind of international Big Brother tapping in to their stethoscopes. Perhaps "Concerned Ontario Doctors" believes the Vatican should be monitoring and dictating doctors' conduct?

Predictably too, the Catholic church, with Dr Gill among them, as been actively advancing the right for doctors to ignore legal and valid patient requests to be considered for MAiD, refusing to refer them to other doctors for assessment.

The WMA will eventually have to update its stance to neutral, to honour the range of deeply-held perspectives across the medical spectrum instead of attempting to impose the views of just one end.


1 I was unable to find any other member or spokesperson for this “group” other than Kulvinder.


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Physician consultation and end of life decision quality improves under VAD law

Two DyingForChoice.com reports to the Western Australia Parliament committee inquiry into end of life choices furnish clear evidence from multiple peer-reviewed research papers that the quality of a broad range of end-of-life decision types have improved in jurisdictions with voluntary assisted dying (VAD) laws.

Training and decision making has improved under VAD

In the first report, studies show that the quality of palliative care education and the quality of decision making has improved when VAD is legalised: (PDF 0.6Mb).

Where decision making is best and worst

In the second report, studies show that clearly inappropriate doctor decisions (unilaterally making end of life decisions about a patient without involving the patient or her family) are lowest in the Netherlands with its extensive experience in VAD, and highest in Italy with its strong opposition to VAD: (PDF 0.2Mb).

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Which doctors 'play God' most with patient end of life decisions might surprise you

In two supplementary submissions to the Parliament of Western Australia, I report empirical evidence about the standards of end-of-life medical decision making in jurisdictions with and without voluntary assisted dying (VAD) laws. The evidence clearly contradicts the assumption of assisted dying opponents that legalised VAD will lead to worse end-of-life decision making by physicians. In fact, the evidence clearly shows which physicians are 'playing God' with their patients, and it's not the Dutch.

When I appeared as an expert witness before the Parliament of Western Australia's Joint Select Committee on end of life choices, the Hon. Nick Goiran, a staunch Christian opponent of VAD, asked me for evidence of bringing end of life decision making out of the 'dark shadows' and into the light in jurisdictions in which VAD is lawful.

Existing evidence

Of course, there's the clear evidence from both the Netherlands and Belgium that the rate of non-voluntary euthanasia (NVE) has dropped significantly and stayed lower after their Euthanasia Acts each came into effect in 2002. There's also the clear evidence that the rate of nurse administration of possible life-ending drugs has dropped significantly in Belgium with a VAD law, over a similar time period in which it had increased significantly in New Zealand, where there is no VAD law. These forms of evidence were already documented in the comprehensive submission (PDF 5.4Mb) I'd made to the Committee.

Training and decision making has improved (Supplementary 1)

Mr Goiran opined that any improvements in palliative care were not relevant to his question. In my first supplementary submission to the Committe (PDF 0.6Mb) to further inform it of the empirical evidence, I disagree. As I point out, VAD decisions are not made in a vacuum: they are made after other interventions have been considered and declined, or tried and failed to provide sufficient relief. Palliative care options are central to these considerations. Therefore, whether palliative care improves or deteriorates after VAD laws are introduced is crucial.

Adding to the body of knowledge about the quality of palliative care, in this first supplementary submission I report that Dutch and Belgian physicians attended palliative care professional training at vastly higher rates than most other countries in the several years after VAD was legislated.

I also report the research evidence showing increases in desirable end of life decision rates, and decreases in undesirable decision rates in both the Netherlands and Belgium.

Where decision making is best and worst (Supplementary 2)

In my second supplementary submission (PDF 0.2Mb), I report data from two careful scientific studies into end of life decision making by doctors across multiple countries, including the Netherlands, Belgium, Switzerland, Italy and Australia.

The results are striking: for clearly inappropriate decisions such as withholding chemotherapy or administering terminal sedation without consulting their mentally competent patient, the Netherlands was clearly the best performer with the lowest rates of these kinds of decisions amongst physicians. And who was the overall worst? Italy.

Yes, that jurisdiction that harbours the head office of the world's most actively VAD-opposing organisation, the Catholic church, and where 82% of physicians are Catholic, were by far the most likely overall to make medical end of life decisions about their mentally-competent patients without consulting either the patient or her family. Italian physicians were, respectively, more than five times, three times, and twice as likely as those from the Netherlands, Beligum or Switzerland, to make unilateral end of life decisions without consulting either the patient or her family.

So much for high moral standards under a more religiously-driven and VAD-opposing regime.

I also illustrate from another study how VAD decision making in the Flemish north of Belgium, where the rate of VAD deaths is higher, is significantly higher in quality than in the Walloon south.

Conclusion

The peer-reviewed research data currently available consistently and directly demonstrate improvements in end of life care education and decision making in jurisdictions with VAD compared with those that don't. In contradiction to VAD opponents' assumptions, it's Italian physicians — who largely oppose VAD — who tend to 'play God' most with their patients.

The evidence comprehensively supports the view that legalisation of VAD brings a wide range of end of life decision making out of the shadows and into the light, where critical and open appraisal results in significant improvements.


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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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The deeply-flawed Jones & Paton, and Kheriaty articles purporting to show suicide contagion.

In the ongoing political campaign against assisted dying law reform, opponents have spread one piece of egregious misinformation after another. One of the most common is supposed “suicide contagion” from assisted dying laws to general suicide, a theory popularised by Catholic Prof. Margaret Somerville. Despite the nonsense of her claim being comprehensively exposed, she still believes that her opinion “will prove to be correct.” Two journal papers published in 2015 purported to, but didn't, establish suicide contagion in Oregon and Washington states.

Note: the report is now published here.

Assisted dying law reform opponents are still relying on a 2015 paper by Catholics David Jones and David Paton, bolstered by a glowing editorial of it written by Catholic psychiatrist Aaron Kheriaty, published in the Southern Medical Journal, as continued ‘proof’ of suicide contagion theory, at least in respect of USA states Oregon and Washington (since data from other lawful jurisdictions contradicts the theory).

Jones & Paton’s article reported the use of econometric modelling to test for ‘suicide contagion’ from Oregon and Washington’s Death With Dignity Act (DWDA) laws. But, in an exposé to be published this week, no fewer than ten ‘deadly sins’ of the study are peeled back to reveal the rot within.

The very deep flaws and biases of the original articles include:

  • Cherry-picking information from cited sources to argue their case, while omitting information from the same sources that contradicted their case;
  • Including test and control subjects whose consequence was likely to maximise the likelihood of finding a positive association;
  • Demonstrating a poor understanding of suicide and its risk and protective factors and failing to control for most confounding effects in their econometric model ‘pudding’;
  • Overegging the “causative suicide contagion” interpretation when no correlation between assisted dying and general suicide rates was found; and
  • Failing to use direct, robust and readily-available evidence that showed their study couldn’t possibly have hoped to return scientifically valid “contagion” proof.

 
The USA’s National Violent Death Reporting System (NVDRS), of which Oregon is a founding member, shows that even if “assisted dying suicide contagion theory” were true, fewer than 2 of 855 Oregon “total suicides” in 2014 could have been attributed to “contagion” from DWDAs.

Further, both Oregon and Washington state rankings for suicide rates have improved, not deteriorated, since their DWDAs came into effect, while the suicide ranking for a relevant control state — Oklahoma — has deteriorated substantially over the same time.

Ultimately, through numerous and deep methodological flaws, the Jones, Paton and Kheriaty articles reveal a bias to promote “assisted dying suicide contagion theory” while ignoring the robust evidence from multiple lawful jurisdictions, including in their own ‘study,’ that contradict it.

The exposé, titled “The ten deadly sins of Jones, Paton and Kheriaty on ‘suicide contagion’,” will be published by DyingForChoice.com later in the week.

Note: the report is now published here.


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