Blog by Neil FrancisPosted on Tuesday 24th September 2024 at 11:54pm
The Dutch LZA-LP has just published its latest annual report.
Nearily two decades ago...
It seems like such a long time.
The Groningen Protocol
Back in 2005, the Dutch Paediatric Association (NVK) ratified what is known as the Groningen Protocol. It was adopted into the nation's regulations in 2006. It allows for the termination of a neonate's life in very particular circumstances, via strict processes, and reported to the regulating authority, the LZA-LP.
Only the most grave, extremis circumstances are eligible, for example Herlitz type epidermolysis bullosa, an untreatable condition that causes extreme internal and external blistering, and then death.
Then in 2013, the Dutch medical association (KNMG) released a medical media statement saying that each year, some 650 of 175,000 Dutch neonates will die not long after birth.
VAD opponents become enraged
Opponents of voluntary assisted dying (VAD) immediately became enraged, joining dots that didn't exist.
"After a decade of legalized assisted dying in the Netherlands, it is estimated that as many as 1 in 3 deaths in the country are from euthanasia [itself false] – including 650 babies each year." — Anti-VAD correspondent
The flood of false associations continued at least until 2016. It was then that I conducted a scholarly, forensic and exhaustive investigation into the Groningen Protocol, its history and its use, as well as documenting the trail of religious institutions running the "650 babies" association story up the media flagpole. I published a paper on it.
What's happened since then?
For appropriate reference, in the nine years immediately preceding the Protocol, there were 22 cases of neonatal euthanasia in the Netherlands.
That's not per year. It's the total over nine years. An average of a bit over two a year. Not 650.
And since regulation?
The LZA-LP has just released its 2022-23 report on neonatal euthanasia cases, so we're now up to date. And the figures are:
That is, in 9 years prior to the Groningen Protocol there were 22 cases, while in twice the period after its introduction (18 years), there were 3.
The findings show that shining a light on practice helps improve it. And that VAD, whose numbers have increased in the Netherlands, is not associated with a concomitant rise (but rather a major drop) in the small number of neonatal euthanasia cases.
I've yet to see any of the sources who spread "650 babies euthanised every year" misinformation publish a correction or refer to the LZA-LP annual reports. I wouldn't hold my breath, either.
More of the same
The "650 babies" caper is still doing the rounds.
Take Lord Alton of Liverpool for example. Last year he gave an address to a Catholic Social Thought forum, in which, after invoking Nazi Germany, he said:
"For those who would contend that infant euthanasia in the Netherlands is only permitted for rare and exceptional, cases, a Dutch commission on euthanasia argued in 2013 that as many as 650 infants should be eligible for the practice in the country each year." — Lord Aston of Liverpool
Actually, it was the Dutch medical association, not the Dutch euthanasia commission. It was 650 babies die, not "should be eligible for euthanasia". And the already small numbers have radically dropped, not risen.
But let's not let the facts get in the way of a good story.
Blog by Neil FrancisPosted on Wednesday 6th April 2022 at 6:35pm
Dutch and Belgian VAD rate analysis as at 2016
Through the lens of Covid lock-downs, six years ago seems like an eternity ago, doesn't it? But it was back in 2016 that I published a major analysis of voluntary assisted dying rates and practice in the Benelux lowlands, focusing a bright spotlight on the Netherlands and Belgium.
Using authoritative and robust data, I indicated that the ongoing rise in both countries' VAD rates would level out at rates that were culturally bound. This despite persistent hyperventilations of VAD opponents that most of us would eventually be "knocked off" by not-so-voluntary euthanasia. Generally, the adoption of behaviours at the societal level tends to follow a sigmoidal (stretched S-shaped) curve, and the then VAD data was consistent with this phenomenon.
The above chart is data I presented in 2016, with third order polynomial fits. A few things worth noting:
Both countries' VAD legislation came into effect in 2002.
Their legislation is quite similar, with only small differences.
Belgium provides a microcosm of cultural analysis because the national legislation applies to both the Dutch-predominant north (Flanders) and the French-predominant south (Wallonia).
The Dutch data starts well above zero because it had permitted VAD by regulation (not legislation) for some two decades prior to the legislation.
The late drop in the Dutch trend line is not so much a prediction, but a mathematical curiosity of third order polynomials. I did not predict a drop after leveling off.
The separate data for Flanders and Wallonia is measured by the proxy indicator, language (VAD reports filed in Dutch versus French). This is not perfect, particularly since Brussels, counted by the Belgians as a third official and separate region, speaks mostly French but is situated in Flanders. Nevertheless, it provides a powerful indicator of cultural differences in practice under the same laws.
In March last year the Belgian euthanasia commission published its 2020 report card. I re-analysed the data and wrote that the Netherlands' natural VAD rate seemed to be around 4.3%, and Belgium's (nationally) around 2.4%.
In April last year, the Dutch euthanasia commission published its 2020 report card. I analysed the data again and wrote that due to increased total deaths in 2020 due to Covid-19, the seeming drop in the VAD rates was an aberration and the rates would likely be slightly higher for 2021. This proved to be correct.
The very latest data
The other day, the Belgium euthanasia commission published a brief report of the statistics for 2021, and the Dutch euthanasia commission had also published its 2021 report card. So I thought this was an excellent opportunity to update our knowledge about culture and VAD rates.
And here's the same chart as above, updated with all data up to 2021.
Dutch and Belgian VAD rate analysis as at 2022
The Dutch VAD rate indeed has levelled out at around 4.3%, and the Belgian rate at around 2.4%. The Dutch rate is quite close to the prediction of 2016, while the Belgian rate is actually a bit lower than the 2016 prediction.
And the cultural difference between Dutch and French-speaking Belgians continues, with the Belgian Dutch VAD rate higher and closer to the Netherlands (of course, Dutch) rate. And the French-speaking rate seems not to have quite reached its resting place yet. That might well take another five or more years.
So, here's another general prediction. There will be further rises in the VAD rate, but they will be small, and long-term. This is because a majority of VAD occurs in relation to cancer, and cancer, statistically speaking, makes an appearance in the 50s age bracket, and peaks in the 60s and 70s. And populations in these countries, as around the world, are ageing.
But at no stage was hyperventilation warranted that significant numbers of people would be pressured into VAD, because there was a period of cultural "settling" in regard to both a personal preference for VAD in response to extreme and unrelievable suffering, and accessibility of VAD.
Fact file by Neil FrancisPosted on Thursday 10th September 2020 at 11:27pm
World-first report of VAD use amongst minors is now available for download.
Differences of opinion continue to be expressed regarding law reform to permit voluntary assisted dying (VAD) for minors: persons under the age of legal majority or adulthood, which in most jurisdictions is 18 years. Some claims are florid and ill-informed. To date, no cohesive report has been published regarding the actual use of VAD by minors in jurisdictions where it is lawful. This research aims to address that shortfall.
This study examines official evidence from lawful jurisdictions regarding the extent and nature of VAD amongst minors. Its aim is to facilitate calmer public discourse and more fully inform legislators considering VAD law reform proposals.
Findings
VAD is currently a lawful choice for minors in the Netherlands, Belgium, Switzerland and Colombia.
Dutch and Belgian legislation, and Colombian regulations, stipulate additional requirements regarding minors.
Available Dutch and Belgian data reveal very low rates of use, between zero and three cases per annum, with parental involvement in decision making.
There are no cases of VAD amongst minors on record in Switzerland.
No official case data is available from Colombia. However, given the extremely low rate of VAD use overall, cases amongst minors are highly unlikely.
While use of VAD laws by minors is rare, a review of case records reveals — as for adults — severe refractory underlying illness with extreme, unrelievable suffering.
Conclusions
Use of VAD by minors in lawful jurisdictions is rare, but nevertheless occurs with parental involvement in decision making, and otherwise as for adults: in cases of severe, refractory underlying illness with extreme, unrelievable suffering.
Blog by Neil FrancisPosted on Saturday 8th August 2020 at 8:39am
A recent article in The Guardian reports that most Queensland churchgoers support voluntary assisted dying (VAD), citing a recent YouGov poll commissioned by the Clem Jones Trust.
In fact, attitudes in support of VAD have been strengthening across Australia for many years, and the last few are no exception. In this analysis I explain, using impeccable Australian Election Study (AES) data gathered by a specialist team at Australian National University.
Each federal election, the AES gathers extensive demographic and attitudinal data from a substantial sample of Australians. That means we have comparable snapshots from each election in recent times, including 2019, 2016, 2013, 2010 and 2007 (though attitudes toward VAD have been asked only since 2016).
First up, given the well-documented strong connection between higher religiosity and less favourable attitudes towards VAD, let’s take a quick look at Australia’s changing religious landscape.
Abandoning religion: from trickle to torrent
Since federation, periodic census data collected by the Australian Bureau of Statistics (ABS) confirms a long-term decline in religious affiliation (Figure 1).
Figure 1: Religious affiliation in Australia by census year (ABS data) NOTE: Figures are nett of typically 10% non-response
Even this data generally overstates actual religious affiliation, compared with repeated good-quality polls. Census data has pegged religious affiliation typically 4-8% higher than do most polls.
That’s because until the most recent census (2016), collections had primarily or exclusively used a single, massive booklet for household completion. Mr Jones was unlikely to upset Mrs Jones by ticking the “No religion” box when he thinks she’s sure the family is Anglican, and she can see his answers. In contrast, relatives are not looking over the shoulder of an opinion poll respondent, which allows them to be more frank.
Additionally, a formal booklet is more likely to prompt respondents to answer in terms of historical household identity (a lagging indicator), while ad hoc surveys are more likely to prompt answers in terms of recent, pragmatic attitudes and practices (current indicator).
Abandoning religious identity
AES data clearly shows that for major denominations, Australians are leaving institutionalised religion in droves (Figure 2).
Figure 2: Religious affiliation by federal election year (AES data)
Over just 12 years Catholic affiliation has dropped from 28% to 21% (a drop of 26% of its flock); Anglican from 21% to 15% (-29%); and Uniting/Methodist from 8% to 4% (-52%). In total, minor Christian denominations have remained around the same, while non-Christian denominations have experienced a small increase, mostly from immigration.
But by far the most dramatic change over the 12 years is that No Religion has soared from 26% to 41% of the population, an increase of 61%. The largest increase was between 2016 and 2019, most likely a result of Australians’ dismay at the 2017 reports of the royal commission into institutional responses to the sexual abuse of children. It found that most offenses occurred in religious institutions, more than half of them in the Catholic church alone.
Abandoning religious practice
Not only have Australians been abandoning religious identity, but for the most part increasingly abandoning religious practice (Figure 3).
Figure 3: Almost never/never attend religious services (AES data)
At the same time as many Australians have abandoned religious identity, those still identifying with Catholic, Uniting, and non-Christians faiths are attending services less than before.
Overall, service attendance has remained about the same amongst minor Christian denominations, and there has been an increase amongst Anglicans (actually because far more Notionals — people who identify with a denomination but never attend religious services — have “left” the Anglican church).
Indeed, in 2019, fewer than half of Australians (47%) ever attend religious services, just a third (32%) attend more often than once in a blue moon, and a mere 16% are consistent attenders.
Clerics might still be talking, but fewer Australians than ever want to listen.
Abandonment to continue
Australians will continue to abandon religion given that most younger Australians reject religion at the same time that older, more religious Australians pass away (Figure 4).
Figure 4: Religion by age cohort 2019 (AES data)
This picture is even more dire for clerics than it was just three years earlier in 2016 (Figure 5).
Figure 5: Religion by age cohort 2016 (AES data)
Over the next 25 years the Catholic church and minor Christian denominations will struggle, while the Anglican and Uniting churches will almost cease to exist if current trends continue.
An integrated measure of religion
For further analysis, we’ll use the Australian Religious Identity 6-Factor (ARI6) model. It segments on the combined basis of religious attitudes and behaviour across a spectrum from Rejecters to Devouts.
Unsurprisingly over the past decade, Devouts have remained firmly entrenched in their faith (Figure 6), while there has been a small downward trend amongst Regulars.
Figure 6: Australian Religious Identity 6-Factor (ARI6) by year (AES data)
Most of the abandonment of religion in recent years has been amongst Occasionals, those who identify with a religious denomination but rarely attend services. This begs the question as to whether clerics were right to assume that they spoke for many in their flocks in the first place.
Attitudes toward VAD — Overall
Between 2016 and 2019 there was a small but statistically non-significant increase in total support for VAD, while there was no change in total opposition (Figure 7).
Figure 7: Australian adult attitudes toward VAD by year (AES data)
What is readily apparent, though, is a substantial increase in the number of Australians strongly in support of VAD (from 43% to 53%), while total opposition has remained tiny at fewer than one in ten Australians (9%).
Attitudes toward VAD — Religious affiliation
Amongst Australians who still count themselves as religiously affiliated in 2019, a majority of all religions except minor Christian denominations clearly favour VAD (Figure 8), including three quarters (74%) of Catholics, four in five Anglicans (78%) and Uniting/Methodists (81%), and almost all non-Christian religious (96%) and non-religious (92%).
Even amongst the minor Christian denominations with nearly half (49%) in support, just one in five (20%) were opposed to VAD, the rest being neutral.
Figure 8: Attitudes toward VAD by religious affiliation 2019 (AES data)
Strong support amongst Catholics increased massively from 36% in 2016 to 48% (close to half in strong support) in 2019, highlighting the irony of Catholic clergy continuing to actively oppose VAD law reform.
Given the tiny minorities opposed across the religious spectrum, those clerics who continue to vocally oppose the legalisation of VAD — including some employing serious misinformation — in no way are speaking for the majority of their flocks.
Attitudes toward VAD — Religiosity
Unsurprisingly, given the vast body of existing scholarly research evidence, opposition to VAD is largely religious (Figure 9).
Figure 9: Attitudes toward VAD by ARI6 2019 (AES data)
Nearly half of all opposition to VAD (44%) is of Devouts, with an additional quarter (26%) amongst Regulars and Occasionals, and a smaller proportion (17%) from Notionals.
Tellingly, even amongst the most religious, opposition to VAD has dropped significantly in just three years since 2016 (Figure 10). Opposition to VAD amongst Devouts dropped from nearly half (46%) to just over a third (35%), and amongst Regulars from 25% to just 15%.
Figure 10: Attitudes toward VAD by ARI6 2016 (AES data)
For 2019, proportions of the most opposed religious segment, Devouts, are almost evenly split amongst supporters, neutrals and opposers.
Amongst the next most religious, Regulars, supporters outnumber opponents by three to one, and in all the other segments supporters outnumber opponents by more than ten to one.
The evidence is clear: even amongst the most religious Australians, opposition to VAD is melting away.
The lowdown for politicians
What does this mean for legislators, who the community is asking to legalise VAD with responsible safeguards? Figure 11 shows VAD attitudes of Australians by the political party they identify with.
Figure 11: Attitudes toward VAD by political party identity 2019 (AES data)
It’s obvious why VAD Bills have been sponsored by Greens members and/or facilitated by Labor governments.
In contrast, Australian Coalition parliamentary parties (with notable exceptions of a handful of Coalition members) have steadfastly obstructed consideration and passage of VAD Bills. This is not because the party machinery is representing the broader Coalition voter, whose overall support stands at 74% versus a tiny 13% opposed. Rather, it’s because of the (widely reported) takeover of the party machinery by the religious right.
The natural home of VAD opponents is minor right parties, comprising overall a slight majority (53%) opposed to VAD. [Addendum: those identifying with minor right parties comprise just 3.1% of the adult Australian population.]
Given that minor right party voters are most likely to give their major party preference flow to the Coalition, the real concern for Coalition election strategists is to minimise first preferences going to a minor right party in the one or two electorates (if any) in which such a minor party win might even be on the cards.
The lowdown for election candidates
It’s been a firm belief among the political class for a long time that candidates openly supporting VAD would be punished at the polls on election day, with little to no downside for candidates opposed to VAD. That, however, is fake news.
A 2012 Newspoll survey asked voters if, all other things being equal, they would change their vote if their otherwise preferred election candidate’s stance was the opposite of their own (support vs opposition). (Full disclosure: as CEO of YourLastRight.com I commissioned the survey.)
VAD-supporting voters stated they would punish their preferred candidate (opposing VAD) at three times the net rate that VAD-opposing voters would punish a supporting candidate. I’ve subsequently published various other observations that are consistent with this finding.
Now that strong support for VAD amongst the Australian public is significantly higher than it was in 2016 (let alone 2012), it would be foolhardy for any supportive politician to hide their light under a bushel, or for an opposed candidate to effectively thumb their nose at the majority of voters.
I’m reminded of a favourite remark of Sir Humphrey Appleby (Nigel Hawthorn) in the 1980s British political comedy series Yes Minister, who would gently point out his Minister’s policy folly (Jim Hacker played by Paul Eddington) with the light remark, “that would be very courageous, Minister!”
It’s now a very courageous candidate indeed who believes their personal opposition to VAD ought to trump the support of the vast majority of their constituency. And, given the ongoing abandonment of religion in Australia, such candidates will soon find themselves on the wrong side of history.
The lowdown for campaigners and voters
Given that most Australians — increasingly including the religious — are in favour of responsible VAD law reform, and with a growing proportion strongly in support, it’s more important than ever to determine election candidates’ real attitudes toward VAD.
Some candidates provide prompt and candid responses to help voters decide. But many candidates obfuscate, either failing to respond at all or responding with non-answers such as they haven’t seen specific legislation yet so cannot answer, or cynically stating only the obvious such as “opinions vary” and it can be “an emotive issue”.
The key action with obfuscators is to get a real answer to the question “could there be any version of a VAD Bill that could enjoy your support?” And assume those who still obfuscate would have said “no”, had they been candid.
Fact file by Neil FrancisPosted on Monday 8th April 2019 at 2:47am
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 arrogance”19 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
Somerville, M 2009, 'We can always relieve pain', Ottawa Citizen, (24 Jul).
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.
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.
Twycross, R 2019, 'Reflections on palliative sedation', Palliative care, 12, pp. 1-16.
Palliative Care Australia 2006, Policy statement on voluntary euthanasia, Canberra, pp. 2.
Davis, MP 2009, 'Does palliative sedation always relieve symptoms?', Journal of Palliative Medicine, 12(10), pp. 875-877.
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.
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.
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.
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.
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.
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.
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.
Palliative Care Australia 2018, National Palliative Care Standards, Griffith ACT, pp. 44.
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.
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.
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.
Hain, RDW 2014, 'Euthanasia: 10 myths', Archives of Disease in Childhood, 99(9), pp. 798-799.
Horne, DC 2014, 'Re: Why the Assisted Dying Bill should become law in England and Wales', BMJ, 349, p. g4349/rr/759847.
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.
Blog by Neil FrancisPosted on Sunday 12th August 2018 at 7:40am
Margaret Somerville's latest and repeated misinformation deserves censure.
If there’s one thing you have to admire about Margo Somerville, Catholic Professor of Bioethics at the University of Notre Dame Australia, it’s her persistence in the face of being called out for misrepresenting facts about assisted dying. She’s at it again.
Today in the Sydney Morning Herald, Somerville was quoted spruiking her credentials via a recent publication in the peer-reviewed Journal of Palliative Care.1 Since I study the professional literature, I’m aware of said article, which was published several weeks ago. It's a shocker.
The authority bias
Somerville shows herself to again to not care much for the full facts. She seems more comfortable with calling on the ‘authority bias’: advancing her credentials as a “Professor of Bioethics” along with nine “international counterparts” in the authorship of said paper.
I’ll spare you a blow-by-blow analysis of how the JPC article skilfully employs reassuringly professional tones to stake a wholly one-sided and shockingly ill-informed stance against assisted dying law reform.
A very telling example of misinformation
Let’s look at just one very telling example: the statistics that the authors quote about non-voluntary euthanasia (NVE) rates in Belgium and the Netherlands. NVE is a doctor’s act of hastening a patient’s death without a current request from the patient. The authors say that:
“Administration of lethal drugs without patient request occurred in 1.7% of all deaths in the Flanders region of Belgium alone and 0.2% of all deaths in the Netherlands.”
Are these figures correct? Yes indeed they are... as at the date of the cited sources. However, they are just cherry-picked tidbits from a larger and very different smorgasboard of evidence.
A throbbing great falsehood with warts
Do the figures mean what the authors say they mean? In no uncertain terms, absolutely and incontrovertibly not.
The authors don’t just coyly suggest, imply or impute that those NVE rates are caused by the legalisation of assisted dying, they directly claim it. Right in front the statistics, they state categorically that:
“Allowing voluntary euthanasia has led to non-voluntary euthanasia.”
Let’s put this the politest way we can: that’s a throbbing great falsehood with warts on it. The authors would have known this if they’d paid attention to published research facts beyond their own opinions.
Comprehensively ignoring peer-reviewed facts
Had the paper’s authors (and the supposed peer reviewers) actually known much about the subject matter, they wouldn’t have referred to those figures, because they’re massively unhelpful to the case the authors attempt to prosecute. Here are three central published facts about the case:
Fact 1: Before the Netherlands’ euthanasia Act came into effect, the NVE rate was 0.7%. Then in the next research round with the Act in place it had dropped to 0.5%, and the round after that, to 0.2%. The last is the figure the authors quote as evidence that “VE leads to NVE”, despite the fact that the rate had massively dropped, not risen.
Fact 2: Before Belgium’s euthanasia Act came into effect, the NVE rate was 3.2% [typo 3.5% corrected]. Then in the next research round with the Act in place it had dropped to 1.7%, the figure the authors quote. Again, the rate had massively dropped, not risen.
Fact 3: The rate of NVE in the United Kingdom was researched around the same time as the later Dutch figures, and found to be 0.3%.2 The UK has never had an assisted dying law,so the 0.3% NVE rate, which is higher than the Dutch 0.2% rate the authors quote, can't have been caused by one.
So, these three key published facts — known to most of us with an interest in lawful assisted dying — squarely contradict the authors' VE-causing-NVE claim. It's at the very least astonishing and inexcusable that all the numerous authors and peer reviewers of this “scholarly” article either didn’t know, or “overlooked”, them.
Indeed, despite holding one of the world’s largest scholarly libraries on published assisted dying research, I know of no study that establishes a VE-to-NVE link. All the evidence is contrary.
Not the first time
We could perhaps be a little forgiving if the authors just got a statistic wrong. After all, we're all human. But there are ten authors, plus peer reviewers. And there’s the egregious offence the authors committed in making an unequivocal but false claim about the data. Did none of them know what they were talking about or bother to check?
In this case I’m wholly unforgiving. That's because I’ve called Somerville out multiple times before for misrepresenting data, including for misrepresenting Belgian and Dutch NVE data precisely as she does again in this JPC article. We’ve even publicly exchanged words about it via the ABC’s Religion and Ethics portal. It’s not like she simply didn’t know.
I’ve also called Somerville out for wrongly claiming that Dutch Minister of Health Dr Els Borst regretted the euthanasia law; and wrongly claiming the Dutch elderly go to German hospitals and nursing homes for healthcare for fear of being euthanased in the Netherlands, including that NVE actually does occur in German nursing homes, despite, as Somerville notes, “their strict prohibition on euthanasia”.
This rubbish deserves censure and ridicule
While I argue strongly that different views about assisted dying law reform are welcome in a robust democracy, repeatedly spreading such egregious misinformation about assisted dying is an embarrassment to and unworthy of scholarly attribution to professorship. Such rubbish deserves to be rejected, censured and ridiculed.
References
Sprung, CL, Somerville, MA, Radbruch, L, Collet, NS, Duttge, G, Piva, JP, Antonelli, M, Sulmasy, DP, Lemmens, W & Ely, EW 2018, 'Physician-assisted suicide and euthanasia: Emerging issues from a global perspective', Journal of Palliative Care.
Seale, C 2009, 'End-of-life decisions in the UK involving medical practitioners', Palliat Med, 23(3), pp. 198-204.
Blog by Neil FrancisPosted on Sunday 22nd July 2018 at 12:14am
DyingForChoice has translated the entire 2016-2017 report into English
Belgium's Federal Commission of Control and Evaluation of Euthanasia this week published its full 2016–2017 biennial report. The report is published only in French and Dutch, which places English-speaking jurisdictions at something of a disadvantage.
DyingForChoice has translated the entire report, as well as a copy of the Belgian Euthanasia Act (2002) as it currently stands with amenedments, so that English-speaking audiences can read and understand it.
A summary of key points, the full report in English, and a full copy of the Euthanasia Act, can be found in this Fact File.
Fact file by Neil FrancisPosted on Sunday 22nd July 2018 at 12:07am
DyingForChoice has translated the Belgian 2016-2017 report into English
The Belgian Federal Commission of Control and Evaluation of Euthanasia has released its full 2016–2017 report. Its reports are published only in Belgium's two national langauges: French and Dutch. So that English-speaking countries can read the report in full, DyingForChoice.com has translated the entire 70 page report into English.
Major takeouts of the 2016–2017 report include:
There is ample evidence that doctors take diligent care by often consulting more widely than the Act requires.
Assisted dying by advance directive remains very uncommon (1.3% of 2016/17 cases): almost all cases are by current request.
There has been a significant increase in the ‘poly-morbidities’ category, in part because of a change in the classification system, but also because more folks fall into this category as the population ages.
Cancer is still the major reason that patients choose assisted dying (64% in 2016/17), though its proportion of contributing illnesses is falling.
The number of assisted dying cases in relation to psychiatric illness went down, not up, compared to previous years.
Since changing the law in 2014 to permit assisted dying choice for minors, there have been just three cases: two in 2016 and one in 2017, all of severe and intractable illness. Extensive consultation occurred in each of the three cases, including assessment of decision-making capacity by at least one specialist child psychiatrist or psychologist.
The typical age profile of euthanasia cases has in recent years increased a decile, as the population ages. Our own analysis of Belgian official death stats (not the Commission’s) shows that the elderly are not an ‘at risk’ group: the age distribution profile of assisted deaths is still younger on average than total deaths.
The Commission notes that cancer diagnoses are increasing, so the counts of assisted deaths are expected to continue to rise in coming years.
The Commission discusses several cases that required extended review, but no cases were referred to the public prosecutor in 2016/17.
The full (unofficial) English report can be downloaded here: PDF 1.4Mb.
A full (unofficial) English translation of the current version of the Belgium Euthanasia Act can be downloaded here: PDF 0.3Mb.
The authoritative original versions of the Belgian 2016-2017 report can be accessed in French and Dutch.
Fact file by Neil FrancisPosted on Monday 12th February 2018 at 11:03pm
The Parliament of Western Australia is investigating end-of-life choices including VAD. Photo: WA Parliament
DyingForChoice.com's major submission to the Parliament of Western Australia on end-of-life choices, including assisted dying, has now been published and is available online. It contains recent updates to research data about assisted dying.
Statement of Barbara Roberts, former Governor of Orergon. 7
Part A: Introduction. 8
A critical principle. 8
Decision-making biases to be avoided. 8
Potential bias 1: Strong emotional language diminishes critical faculties. 8
Potential bias 2: Repetition doesn’t make a falsehood true. 8
Potential bias 3: Use of ‘authorities’ as undeserved ‘evidence’ cues. 8
Assisted dying law reform is necessary. 9
Consequences of denying lawful assisted dying choice. 10
Overmedicalisation and institutionalisation of death. 12
Choice to die can be rational 13
Regulation of existing underground practice. 14
Part B: Overwhelming support. 16
Australian voter attitudes by demographic. 16
Assisted dying a major issue for voters. 20
More supporters than opponents think reform important. 20
Voters will punish opposing MPs more. 20
Not just a silver-hair issue. 21
Summary of Australian public attitudes. 22
Australian health professional opinion.. 23
AMA opposed stance indefensible. 23
RACGP supportive stance. 23
Nurses & Midwives’ Federation supportive stance. 23
Australian Psychological Society supportive stance. 24
Part C: Opposing arguments critiqued. 25
Time to name up filibustering for what it is. 25
Hippocratic Oath fictions. 25
‘First do no harm’ fails in the real world. 26
Assisted dying is not about ‘saving money’. 27
Assisted dying is consistent with the right to life. 28
Palliative care availability improves. 28
Trust in doctors remains high. 28
Ample evidence against ‘slippery slope’ theories. 30
Failure 1: Rhetorical sham. 30
Failure 2: Unsupported by overseas evidence. 32
Failure 3: Unsupported by domestic evidence. 33
Opposing world views can be concurrently accommodated. 35
Part D: Correcting misinformation about lawful jurisdictions. 37
Dr Els Borst remains proud of euthanasia law reform. 37
Dutch elderly happy with nursing homes. 38
Non-voluntary euthanasia rates fall, not rise. 39
No suicide contagion. 42
Not in Oregon. 42
Not in Switzerland. 45
Not in the Netherlands. 46
Not in Belgium. 48
Belgian nurses are like anywhere else. 49
Dutch happy to go to hospital 51
Groningen Protocol a wise policy. 52
Theo Boer always an assisted dying law sceptic. 52
Women are not vulnerable to voluntary euthanasia laws. 53
Victorian MP publishes extensive misinformation..\ 54
Opponents admit no slippery slope ‘cause and effect’. 54
Part E: Potential models of assisted dying law reform. 56
Oregon/Washington model. 56
Benelux model. 56
Swiss model. 57
Options for Western Australia. 58
Conclusion. 59
Statement of Ginny Burdick, Acting Senate President, Parliament of Oregon. 60
Blog by Neil FrancisPosted on Monday 13th November 2017 at 6:28pm
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.
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.