Assisted dying (AD)

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Beligum and Oregon released their annual VAD reports this week.

Belgium and the USA state of Oregon both released their annual voluntary assisted dying (VAD) reports this week. I report on the numbers.

While the Netherlands and Washington state haven't released their 2020 annual VAD report cards yet, Belgium and Oregon have.

Belgium

Back in 2016 I wrote a detailed Whitepaper on assisted dying practice in Benelux, including data up to 2015. In it, I pointed out that in several years' time the trend to increasing rates of VAD would level off, like a sigmoidal (stretched-S shape) curve, as does most human adoption of new behaviours.

That time has arrived. The most recent data from both the Netherlands and Belgium shows that in both countries, the VAD rate, as a proportion of all deaths, has generally levelled off (Figure 1).

dutchbeligianvadlong2021.gif Figure 1: VAD deaths as a proportion of all deaths in the Netherlands and Belgium
Sources: Official Euthanasia Commission reports; Government total death statistics

The cultural rate of VAD in the Netherlands appears to be around 4.3% of all deaths, while in Belgium it's around 2.4%. No doubt these figures will vary slightly over coming years, but shrill pronouncements that the rate would continue to rocket higher and higher are refuted by the evidence.

That Belgium's “level” VAD rate is significantly lower than the Netherlands' despite quite similar (though not identical) laws, suggests that VAD rates are influenced more by cultural and other factors beyond the specific provisions of formal statutes and regulations.

Oregon

Meanwhile, in the state of Oregon, the Death With Dignity Act (DWDA) was revised in 2019. Previously, some people suffering intolerably at the very end of life were excluded from using the Act if they died within 15 days of deciding to use the Act. This was due to a fixed, mandatory 15-day cooling off period. Yet in the last weeks and months of life, an individual's condition can take a sudden and dramatic turn for the worse, so that previously the person may have not qualified for other reasons or felt they still had time to apply for access, and now would not qualify the 15 day cooling off period.

The cooling off provisions were updated by Oregon's legislature in 2019 to allow access without the cooling off period, in cases where the person is, in professional medical opinion — and with a formal declaration to the effect — reasonably likely to die before the 15 days had elapsed.

The revision was in effect for the entire 2020 calendar year.

As a consequence, some people felt they didn't need to apply quite so early “just in case” they might want to use the law, while others who would have been excluded altogether were able to use the law. This accounts for a slight dip in the “old” provisions rate, along with a rise in the total proportion of DWDA deaths (Figure 2).

oregondwdalong2021.gifFigure 2: Oregon DWDA deaths as a proportion of all deaths, new-rule data in light blue
Source: Oregon DWDA annual reports; Government total death statistics

Oregon's overall rate of VAD remains much lower than in the Netherlands and Belgium, whose laws are not restricted to cases of terminal illness.

However, in no case has any parliament legislated to limit cases to a numbered cap. In all jurisdictions, legislation focuses on the conditions under which a person may become eligible to access VAD choice, regardless of the actual numbers requesting and qualifying for access.


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There's a good reason why assisted dying opponents don't mention Switzerland. [Photo by Andrew Bossi]

Supposed Dutch suicide contagion from assisted dying

Recently, Dr Theo Boer, an Assistant Professor at a "black-stocking" (strongly conservative Protestant) theological college in the Netherlands, was at it again — criticising the Dutch euthanasia law to anyone who would listen: "don't follow the Dutch euthanasia law path because it leads to 'suicide contagion'".

I've exposed Prof. Boer's cherry-picked nonsense before. Astonishingly, he even ignores data from the Dutch Euthanasia Commission, despite the fact he used to serve on one of its five Regional Review Committees.

What he doesn't mention is that amongst the five Regions, the Region with by far the highest rate of assisted deaths had the second-lowest rate of general suicide, and the Region with the lowest assisted death rate had by far the highest general suicide rate (Figure 1) in 2014,1 the year Boer left his Committee and began bad-mouthing the Dutch law. Quite the opposite of "suicide contagion".

dutchvadandsuiciderates.gifFigure 1: Dutch assisted death and general suicide rates by region, 2014

From multiple safeguards to just one

The Dutch euthanasia Act has a number of safeguards that stipulate who may qualify to access assisted dying in the Netherlands, and how qualification is assessed, implemented and reported to the authorities.

But there's another country that permits assisted dying with just one provision: Switzerland.

In effect since 1942, an exception in the Criminal Code permits assisted suicide, provided assistance is rendered for non-selfish motives. That's it. There's no legislated (or even government-regulated) requirements for age, illness or condition, decisional capacity, cooling off periods, or anything else.

In the 1980s, two assisted dying associations were formed to make assisted dying generally possible: Exit Deutsche Schweiz for German-speaking Swiss residents, and Exit A.D.M.D. for French-speaking residents.

Since then, several other smaller associations have been formed, including in 1998 Dignitas, which provides assistance to foreigners. (The main societies assist only Swiss residents.) The current membership of the societies, combined, is well in excess of 150,000 people, in a population of just 8.5 million. Assisted dying is often discussed openly in the media.

If "contagion" anywhere, in Switzerland, right?

Given that Switzerland has an abundance of the ingredients that religious opponents of assisted dying claim lead to "suicide contagion", you'd think they'd be shouting about Swiss "suicide contagion" from the rooftops.

But they don't mention Switzerland.

There's a powerful reason why: the data is not only unhelpful to their "contagion" theory, but actively hostile to it.

Latest official government data

I've written about Switzerland before, but, given the ongoing "suicide contagion" misinformation, I thought an update warranted. On request, my contact in the Swiss Federal Statistical Office (FSO) promptly re-supplied all publicly-available statistics of assisted deaths and general suicides, with the data now running up to 2017.

It makes for interesting reading. Figure 2 shows Switzerland's (CH) long-term general (non-assisted) suicide rate, along with the domestic (Swiss resident) and Dignitas (foreigner) assisted death rates. All the official (Australian Bureau of Statistics) longitudinal data I could find for Australia's (AU) general suicide rate is also included.

swissdeathratesto2017.gifFigure 2: Swiss death rates 1969–2017; Australian suicide rates 1990–2017

Immediately obvious is that the Swiss general suicide rate has dropped massively and consistently since the two main assistance societies were formed in the early 1980s. And it's continued to drop even as the rate of assistance, and public discussion, has increased over the most recent three decades.

I also asked the FSO how many cases on record were of minors (persons under the age of majority or 18 years). The answer? None. I double-checked. Zero. Zip. No minors receiving assisted dying in Switzerland. Indeed, cases under the age of 35 years old are uncommon.

Consistent with best practice

Indeed, the data is consistent with suicide prevention. The societies help people get the medical care they need and consider assisted death only when other avenues have failed to provide acceptable relief. Every assisted death is reported as such by the association to the authorities — otherwise the unexpected death would result in a coronial inquiry.

Each association has clearly-defined processes and oversight by ethics specialists. Clients requesting access are assessed carefully by doctors. (In fact, the lethal medication can only be lawfully obtained by medical prescription.) The associations take their responsibilities very seriously.

The data is also consistent with substitution: that what would have been some violent and lonely suicides as a result of unrelievable suffering from intractable conditions, are now peaceful assisted deaths.

And for the record, despite the Swiss law being in effect since 1942 versus Dutch regulation from only 1984; and Swiss law having only one provision versus Dutch regulation/legislation with many; in 2017 the Swiss assisted dying rate, including Dignitas cases, as a percent of all deaths, was less than half that of the Netherlands' rate.

Reasons for requesting an assisted death

Exit Deutsche Schweiz, by far the largest of the Swiss associations, has published statistics of its cases (Figure 3).

exitdsreasons2015.gifFigure 3: Reasons for pursuing assisted dying, Exit Deutsch Schweiz 2015

In 2015, like other jurisdictions, cancer was by far the most common reason (40.8%) for requesting an assisted death. Polymorbidities (22.4%) was next, followed by refractory pain at 8.6%, lung diseases at 5.0% and Parkinsons at 4.3%.

Despite no government-regulated access requirements, assistance for mental illness was very low at 1.7% (Dutch 1.2% in 2015) and cases of dementia at 1.4% (Dutch 2.0%; Belgian combined mental/dementia 3.1% in 2015).

And compared to Australia?

In the 1990s, the Swiss general suicide rate, although falling, was significantly higher than Australia's (Figure 2) until 2010, when the rates were the same. Since 2010, the Swiss suicide rate (with no legislated procedures for its permitted assisted dying) has continued to drop, while Australia's (at that time with no assisted dying law at all), began to rise.

This difference highlights the clear anchoring bias exhibited by religious opponents who cherry-pick their data to try and claim the rise in the Dutch general suicide rate must be the result of "suicide contagion" from assisted dying, when Australia's rate also increased over the same time period, but in the complete absence of an assisted dying law. (Victoria's assisted dying legislation didn't come into effect until mid-2019.)

Further, the Swiss rate has continued to drop even with a significant increase in assisted dying.

Conclusion

Of course, general suicide is a serious issue. It has numerous well-known risk factors (e.g. mental health, substance abuse, unemployment, relationship breakdown, opportunity) and protective factors (e.g. hotlines, funding mental health programs, unemployment benefits, removing opportunity), none of which assisted dying opponents mention while cherry-picking their statistics.

Meanwhile, as legislators contemplate the specific safeguards contained in Bills before their legislatures, it's important to strike an appropriate balance between sufficient safeguards, and inappropriately requiring those considering an assisted death to climb Mount Everest with one hand tied behind their backs.

Switzerland shows that even in a jurisdiction without legislated practices, access to assisted dying is modest, with assistance groups establishing their own stringent ethical and procedural standards.

And it amply demonstrates even under those conditions, an absence of supposed "suicide contagion".

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1 Official Euthanasia Commission data and official Dutch government suicide statistics by region.


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Multiple "non-religious" anti-VAD campaigns are being run through the Catholic Archdiocese of Hobart

If you're wondering how religious the organised opposition to voluntary assisted dying (VAD) law reform is, current ructions in Tasmania provide a marvellous petri dish of evidence.

Catholic church call to arms

Back in 2011, the now Catholic Archbishop of Sydney, Anthony Fisher, wrote a lengthy, deliberative editorial against VAD, calling on the church to enlist people with no obvious religious connections to help the church fight VAD law reform. He wrote:

“The man or woman in the street … may well be open to persuasion that permissive laws and practices cannot be effectively narrowed to such circumstances”; and
“we need to research and propose new messages and carefully consider who should deliver them, where and how.”

He went on to describe how various doctor, patient, lawyer, indigenous, disability and palliative care specialist groups might be corralled into this public relations campaign. (Nowhere in this musing did he reflect that the church's expectations of VAD calamity themselves might actually be queried or tested.)

Despite this, when promoting anti-VAD messages, he argued, “we do not have to hide our religious petticoats altogether.”

However, this standard of transparency seems to have been abandoned in recent years.

Pop-up group "Live & Die Well"

Take the Tasmanian pop-up group Live & Die Well, for example. Convened just six weeks ago for the sole and express purpose of defeating Tasmanian MLC Michael Gaffney's VAD bill, its website doesn't mention religion… at all. No identified religious connections nor religious arguments of any kind. Meticulously absent.

Indeed, the anti-VAD campaigning pamphlet the group puts about expressly advises folks when writing to their MPs, "DO NOT use religious arguments".

That's quite curious given the religious backing of the group, headed by Mr Ben Smith.

The Catholic church gets busy

Who is Mr Smith? He's the Director of the Life, Marriage and Family Office at the Catholic Archdiocese of Hobart. He reports directly to Archbishop Julian Porteous.

Unsurprisingly, core attributes given in the 2017 job advertisement for which Mr Smith was the successful applicant, require deep knowledge of the Catholic church, unquestioning support for its doctrines, and “highly-developed communication skills” to promote the church's agenda.

And, Messrs Smith and Porteous' arguments are strikingly similar, as I've revealed previously.

Does Mr Smith declare this on the Live & Die Well website? Nope. He's just a "resident of Hobart".

And the other "leaders"?

The other three "team leaders" at Live & Die Well are Mrs Patricia Gartlan, Mrs Karen Dickson, and Mr Daniel Bosveld.

Mrs Gartlan is a recipient of the Catholic church's Knights of the Southern Cross National Award for services to the "sanctity of life". (Recently, her "team leader" entry has been removed from the website.)

Mrs Karen Dickson is Chair of Mothers of Pre-Schoolers (MOPS) Australia, a Christian fellowship group. She's previously campaigned against same-sex adoption, which she opined is against God's will and would result in inevitable "moral decay" and the destruction of "the very foundations upon which society is built". Predictably, she's also actively campaigned against marriage equality, likening it to "dropping a brick on your foot".

Mr Bosveld is a university student (most likely protestant) and President of LifeChoice Tasmania, a tiny student group promoting the "life from conception through [to] natural death" position. His Facebook page "Likes" more than 20 Christian groups, including the Australian Christian Lobby.

Look… over there!

The extent to which Live & Die Well exquisitely attempts to paper over its religious petticoat is exemplified by the inclusion of two articles purporting to strengthen the non-religious case against VAD law reform.

The first is a piece republished from Spectator Australia, in which an atheist says he opposes VAD law reform. Of course there are non-religious people who oppose VAD law reform: but robust survey evidence shows that they're rare, and that in fact strong opposition is strongly correlated with high religiosity. Nor are there teams of atheists actively organising others, as the churches are, to oppose law reform.

The second is an article by Mr Wesley J. Smith which tries to imply that opposition to VAD law reform is more widespread amongst humanists than it is. He's a Senior Fellow at the Discovery Institute. Remember them? They tried and failed to have "Intelligent design" (creationism with lipstick), taught as science in US schools.

I've had words to say about his misinformation and incoherent slippery slope nonsense here, here and here. Oh, and Live & Die Well omits the real publication date of the reproduced op-ed — which is more than a decade ago — presenting it as though it's fresh and contemporary.

Another group

Another group that's been actively and vocally opposing Mr Gaffney's VAD bill is Health Professionals Say No.

A major newspaper ad against the bill was recently taken out in the group's name. It was authorised by a certain Mr Ben Smith. Yes: that's the same Mr Ben Smith who is Director of the Life, Marriage and Family Office at the Catholic Archdiocese of Hobart. And the authorisation address is… the Catholic diocesan centre of Hobart.

One might wonder who actually paid for the ad…

The who's who

The group's website advances the usual slippery slope conjectures, and promotes the video Fatal Flaws, produced by Canadian loyal Catholic, Mr Kevin Dunn. That's the "documentary" that Go Gentle Ausralia's Fatal Fraud film exposes for its extensive religious connections, revealing how it employs emotional manipulation, fear, framing and omission to sow Fear, Uncertainty and Doubt (FUD) in the minds of legislators and the public.

Prominent members of Health Professionals Say No include:

  • Prof. David Kissane, a Knight of Obedience to the (Catholic) Order of Malta.
  • Dr Maria Cogolini, a Catholic bioethicist.
  • Dr Megan Best, a Catholic bioethicist who got her facts fundamentally wrong.
  • Dr Douglas Bridge who has identified his "supreme Christian calling".
  • Prof. John Murtagh who says medicine and Christian ethics are inextricably linked.
  • Prof. Ian Olver, a lay preacher.
  • Dr Peter Coleman who has called for "placing the Christian revelation at the centre of university education."
  • Dr Peter Ravenscroft, past Chairman of the International Christian Medical & Dental Association.
  • Dr Anthony Herbert, former National Secretary of the Australian Christian Medical Fellowship.
     

Too many yet too few

It also includes Victorian, Dr Roger Woodruff. That's significant because one of the group's key claims is that people will feel unduly influenced to use VAD law, i.e. too many people will die from VAD. Yet Dr Woodruff previously published an opinion in the Journal of Palliative Medicine that the most striking feature of the VAD experience in Oregon is “almost total disinterest shown by the terminally ill” due to the small numbers of VAD compared to the number of cancer deaths.

So to sum up that approach: VAD mustn't be legalised because too many people will use it, but it's not worth legalising because too few people use it. Which is it? It can't be both.

Avoiding the ad hominem fallacy

We should be sure not to reject arguments automatically just because they are made by religious people. People of faith have just as much right to be heard in the public square: otherwise one would be arguing special privileges for non-faith Australians. Standards for public discourse are necessary, however.

“Dig here”

The connection being made here is not to reject arguments because of the religion of the informant, but to identify where misinformation almost exclusively comes from. I've been writing about this for years, with exposés on deep religious misinformation like:

  • The Vatican claim that Dutch elderly supposedly go to Germany for medical treatment because they fear being euthanised in Dutch care homes (the claim causing a diplomatic crisis).
  • The Catholic church in Australia spreading grotesque propaganda about Belgium's assisted dying practices, prompting a rare, savage rebuttal from the authors of the scientific study the church misrepresented.
  • The claim that a Council of Europe resolution "banned euthanasia" throughout Europe, when the resolution did no such thing.
  • Spreading the appalling conspiracy theory that 650 babies a year are euthanised in the Netherlands when no such thing happens.
  • Catholic Professor Margaret Somerville's repeated claims, based on cherry-picked data, wrongly claiming suicide contagion from VAD laws, and loftily dismissing extensive evidential rebuttals.
  • A mathematical confection by Catholic bioethicist Dr David Jones and Catholic loyalist and economist Prof. David Paton to attempt to "prove" suicide contagion in Oregon, in which they committed ten deadly sins.
  • The above report being glowingly endorsed by a Catholic psychiatrist, Dr Aaron Kheriaty.
  • Catholic-backed Alex Schadenberg of the "Euthanasia Prevention Coalition" and Catholic "HOPE"'s Branka van der Linden polemicising an article purporting to show 'inhumane deaths' under VAD, but which established no such thing. ("HOPE" was established by the Australian Family Association, a Catholic lobby group founded by Australia's most famous lay Catholic, B. A. Santamaria).
  • Indefensible slippery slope argument from Dr Bernadette Tobin, Catholic ethicist and daughter of B. A. Santamaria.
  • Serious cherry-picking including the negation of cited source meaning, by Victorian Catholic MP, Mr Daniel Mulino, whose report is hosted online by the Catholic Archdiocese of Melbourne.
  • Senior clerics of the Catholic Archdiocese of Melbourne misinforming a parliamentary inquiry.
     

One could go on, but I think the point is amply made.

Conclusion

Public misinformation about VAD law reform and practice arises largely via organised religious commentators who coalesce and focus their efforts against parliamentary law reform bills.

Given how common misinformation about VAD can be from organised religious sources, it's understandable that the public and legislators alike might simply 'switch off' if a commentator reveals a religious background.

It's no surprise then that coordinated religious public relations efforts against VAD law reform try to look as non-religious and as broad-based as possible.

 

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With thanks to my friend Chrys Stevenson for contributing research details in this report regarding members of Health Professionals Say No.


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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).

ABS Census data of religion since FederationFigure 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).

Religious affiliation by federal election yearFigure 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).

Religious service attendance by denominationFigure 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).

Religion by age cohort 2019 (AES data)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).

Religion by age cohort 2016 (AES data)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.

ARI6 by year (AES data)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).

Australian adult VAD attitudes by yearFigure 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.

VAD attitudes by religion 2019Figure 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).

VAD attitudes by ARI6, 2019Figure 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%.

VAD attitudes by ARI6, 2016Figure 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.

VAD attitudes by political party identity 2019Figure 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.


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The Catholic Church's video which blatantlly misrepresents Belgium

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

 

Watch the 1 minute video here.

 

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

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

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

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

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

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

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

But the Catholic church would have you believe otherwise.

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

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

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

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

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

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

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

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

and

“we need to research and propose new messages”

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

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

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


Prof. Kenneth Chambaere's response in full

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

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

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

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


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

 

Read a more detailed report here.

 

Video narrative

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

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

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

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

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

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

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

 

Visit the YouTube page.

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The Parliament of Victoria passed the Voluntary Assisted Dying Act in 2017

Victoria's Voluntary Assisted Dying Act (2017) has now come into effect. Including 68 safeguards, the Act gives Victorians with a terminal illness another option to consider at end of life, if it is of interest to them. As overseas evidence shows, the possible choice of voluntary assisted dying provides comfort and relief for the terminally ill and their loved ones. It demonstrates that the State respects the wider range of alternatives that dying patients may choose to pursue when faced with intolerable and unrelievable suffering.

The Act contains what is arguably the world's most detailed and carefully laid out safeguards.

Key aspects of the provisions are:

  • The person must be 18 years or over; and
  • Be ordinarily resident in Victoria and an Australian citizen or permanent resident; and
  • Have decision-making capacity in relation to voluntary assisted dying; and
  • Be diagnosed with an incurable disease, illness or medical condition that:
    • is advanced, progressive and will cause death; and
    • is expected to cause death within 12 months; and
    • is causing suffering that cannot be relieved in a manner the person deems tolerable; and
  • Doctors and other healthcare workers are not permitted to raise assisted dying — only to respond to formal patient requests.
  • The person must make three formal requests, the second of which must be written and witnessed by two independent people.
  • The person must make the request themselves. Nobody else is authorised to make the request, and the request cannot be made via an advance care directive.
  • Ordinarily, the minimum timeframe between first request and opportunity to take the medication is ten days.
  • The person must maintain decisional capacity at all three requests.
  • Two doctors must reach independent assessments that the person qualifies.
  • Only doctors who have completed specialist training for voluntary assisted dying may participate.
  • Any healthcare worker may decline to participate for any reason, without penalty.
  • A prescription dispensed for the purpose of voluntary assisted dying must be kept in a locked box and any unused portion returned to the pharmacy after death.
  • The person must self-administer the medication; except if the person is unable to, a doctor may administer. An independent witness is required if the doctor administers.
  • Establishment of an authority to receive assisted dying reports, to assess reports, and to refer unacceptable cases to disciplinary or prosecutorial authorities.
  • For Parliament to review summary reports; twice in the first two years and annually thereafter; a formal review at five years.
     

More information about the Act and how to access voluntary assisted dying are available from Health Victoria.

 

-----

Full list of safeguards in Victoria's voluntary assisted dying framework

Access

  1. Voluntary
  2. Limited to 18 years and over
  3. Residency requirement [Victorian resident and Australian citizen or permanent resident]
  4. Limited to those with decision-making capacity
  5. Must be diagnosed with condition that meets restrictive set of criteria [advanced, progressive and will cause death]
  6. End of life is clearly defined [death expected within weeks or months, not more than 12 months]
  7. End of life condition combined with requirement for suffering
  8. All of the eligibility criteria must be met
  9. Mental illness alone does not satisfy the eligibility criteria
  10. Disability alone does not satisfy the eligibility criteria

Request

  1. Must be initiated by the person themselves
  2. No substitute decision makers allowed
  3. Cannot be included as part of an advance directive
  4. Health practitioner prohibited from raising voluntary assisted dying
  5. Person must make three separate requests
  6. Must have written request [witnessed in the presence of a medical practitioner]
  7. Two independent witnesses to request [exclusions for family members, beneficiaries, paid providers]
  8. Specified time must elapse between requests [first and third requests must be at least 10 days apart with exception when death imminent]
  9. Additional time required to elapse between steps of completing process [second assessment and third request must be at least one day apart
  10. Must use independent accredited interpreter [if an interpreter is required]
  11. No obligation to proceed, may withdraw at any time

Assessment

  1. Eligibility and voluntariness assessed by medical practitioners
  2. Must be two separate and independent assessments by medical practitioners
  3. Assessing medical practitioners must have high level of training/experience
  4. Assessing medical practitioners must have undertaken prescribed training [to identify capacity and abuse issues]
  5. Requirement to properly inform person of diagnosis, prognosis and treatment options, palliative care, etc, [by both assessing medical practitioners]
  6. Referral for further independent assessment if there is doubt about decision-making capacity
  7. Coordinating medical practitioner must confirm in writing that they are satisfied that all of the requirements have been met

Medication management

  1. Person required to appoint contact person who will return medication if unused
  2. Medical practitioner must obtain a permit to prescribe the medication to the person
  3. Medication must be labelled for use, safe handling, storage and disposal
  4. Pharmacist also required to inform the person about administration and obligations
  5. Medication must be stored in a locked box

Administration

  1. Medication must be self-administered [except in exceptional circumstances]
  2. If physical incapacity, medical practitioner may administer
  3. Additional certification required if administered by medical practitioner
  4. Witness present if medical practitioner administers

Practitioner protections

  1. Health practitioner may conscientiously object to participating
  2. Explicit protection for health practitioners who are present at time of person self-administering
  3. Explicit protection for health practitioners acting in good faith without negligence within the legislation
  4. Mandatory notification by any health practitioner if another health practitioner acting outside legislation
  5. Voluntary notification by a member of the public of a health practitioner acting outside legislation

Mandatory reporting

  1. Reporting forms set out in legislation
  2. Reporting mandated at a range of points and from a range of participants to support accuracy
  3. First assessment reported [to Board]
  4. Second assessment reported [to Board]
  5. Final certification for authorisation reported [to Board, incorporates written declaration and contact person nomination]
  6. Additional form reported [to Board] if medication administered by medical practitioner
  7. Prescription authorisation reported by DHHS [to Board]
  8. Dispensing of medication reported [to Board]
  9. Return of unused medication to pharmacist reported [to Board]
  10. Death notification data reported [to BDM and collected by Board]

Offences

  1. New offence to induce a person, through dishonesty or undue influence, to request voluntary assisted dying
  2. New offence to induce a person, through dishonesty or undue influence, to self-administer the lethal dose of medication
  3. New offence to falsify records related to voluntary assisted dying
  4. New offence of failing to report on voluntary assisted dying
  5. Existing criminal offences for the crimes of murder and aiding and abetting suicide continue to apply to those who act outside the legislation

Oversight

  1. Guiding principles included in legislation
  2. Board is an independent statutory body
  3. Board functions described in legislation
  4. Board reviews compliance
  5. Board reviews all cases of [and each attempt to access] voluntary assisted dying
  6. Board has referral powers for breaches
  7. Board also has quality assurance and improvement functions
  8. Board has expanded multidisciplinary membership
  9. Board reports to publicly [to Parliament every six months for first two years, thereafter annually
  10. Five year review of the legislation
  11. Guidelines to be developed for supporting implementation

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Palliative care specialist advances incoherent reasons to oppose VAD.

Director of Palliative Care at Cabrini Health, Associate Professor Natasha Michael, yesterday published an opinion piece in The Age newspaper. In it, she rails against Victoria’s voluntary assisted dying (VAD) Act which comes into effect on 19th June. Instead she articulates an arrogant and prescriptive view of what Australians should and shouldn’t be allowed, consistent with Catholic dogma, as I uncover.

Michael, along with fellow devout Catholic Dr Stephen Parnis, ‘tirelessly’ opposed the introduction of Victoria’s VAD law. They continue to actively oppose it, and her opinion piece reveals her spurious ‘reasoning’.

The Catholic Healthcare brick wall

More than half of all palliative care services in Australia are delivered through Catholic institutions, of which Cabrini Health is one arm. These institutions have determined that VAD will not be available in any of their facilities or via any of their services, even if the individual patient and doctor are supportive.

This arbitrarily limits access to lawful choice by citizens.

Confected ‘institutional conscience’

I say ‘arbitrarily’ because ‘institutional conscience’ is a confection: it doesn’t really exist. Only real persons have conscience. The fabricated dictates of any institution — presented as ‘moral rules’ — extinguish the actual real conscience of those who exist within it: at least, those whose conscience differs.

The upshot is that a specific cohort of religious, celibate men in Rome dictate whether Australian citizens can or can’t obtain lawful healthcare services from half the service providers.

So let’s examine what the institutional ‘conscience’ has to say.

Disgraceful framing in headline

We can’t let voluntary assisted dying negate our commitment to the ill”, Michael’s article headline screams.

Firstly, VAD is not available to the “ill”. It’s available only to those with terminal illness and intolerable suffering, according to 68 criteria.

Secondly, Michael invokes a false dichotomy of “negating a commitment”. VAD does not “negate a commitment”. Indeed, to fail to hear and respect a persistent, fully informed and tested request for VAD that meets all the criteria is to negate palliative care’s commitment to honour the patient’s deeply held values, beliefs and decisions.

Medical-coloured glasses

The introduction of voluntary assisted dying legislation in Victoria on June 19 will remind us of the occasional failure of medicine,” Michael says.

That’s it. The patient’s death is a failure of medicine, as though a person’s death is a medical event rather than a deeply human and private one of personhood.

It also flags the common but immature medical assumption that “death = failure”. Death is inevitable, not a “failure”. The key question about death for people with terminal illness is “how”, and Michael presumes to prescribe the “how”: being receptacles for interventions that she and her colleagues provide.

Let’s be clear. Many people are helped enormously by palliative care. That’s a great credit to the discipline’s specialists.

However, as Palliative Care Australia acknowledges, even the best palliative care can’t relieve all excruciating, debilitating and humiliating refractory symptoms.

Michael’s answer to this sometimes “failure” of medical interventions? Deliver more interventions, whether the patient considers them consistent with his own values, beliefs and circumstances or not.

They’re very heavily medical-coloured glasses indeed.

Three faux ‘threats’

Michael then invokes three faux ‘threats’ supposedly caused by lawful VAD in Victoria.

Faux threat 1: “Validating suicide as an acceptable choice”.

Michael exposes her own bias here: that all self-hastening of deaths are the same — that there is no meaningful difference between a dying person who is fully informed and whose rational choice for a peaceful assisted death has been extensively tested, with the violent and impulsive action of a person suffering a temporary, resolvable personal crisis, be it mental illness, substance abuse, intimate relationship breakdown or other circumstance.

Michael is pretty much on her own here. Most Australian doctors make a clear distinction between these very different contexts.

Faux threat 2: “accepting substandard medical care by supporting the lack of rigour in defining [VAD] eligibility”.

Michael overlooks that there is a major lack of rigour in existing, lawful end-of-life choices.

There are no statutory requirements for a patient to refuse medical treatment, even if the treatment would be life-saving.

There are no statutory requirements for the voluntary refusal of food and fluids in order to die, either.

More critically, despite terminal sedation being a common end-of-life medical practice but ethically problematic (including that it may hasten death and may not alleviate intractable symptoms), not only is there no statutory requirement for its practice, but neither the Australian Medical Association nor Palliative Care Australia have official guidelines on its practice.

Thus, in railing against the staggering 68 standards of practice prescribed in Victoria’s VAD law — vastly more than any other in the world — as a “lack of rigour”, Michael makes no mention of three other major life-end choices that have no such standards, including her own discipline’s terminal sedation.

Doctor, heal thyself (and thine own systems).

Faux threat 3: “introducing into the healthcare curriculum the intentional ending of life as acceptable medical treatment”

Michael creates a misleading impression here. By referring to ‘curriculum’ you might think that all medical students would have to undergo training on how to end lives, or be ‘indoctrinated’ to accept VAD. That is not true.

To be able to prescribe lethal medication under Victoria’s legislation, the doctor must undergo additional training in relation to that procedure. Doctors will only receive the training if they self-nominate for it: it’s not compulsory.

If, by ‘curriculum’ Michael means only “VAD might be discussed” in medical school, then she would have to articulate why termination of pregnancy (to which the Catholic church objects) should not be discussed, either. Nor the transfusion of blood, since many Jehovah’s Witnesses object to the procedure.

Own failure in palliative care principles

Nowhere in her opinion piece does Michael acknowledge that the patient may deeply hold values and beliefs that validly favour VAD. Thus, Michael offends the first principle of palliative care which is to make the patient the centre of care and to honour as much as possible the patient’s values, beliefs, attitudes and wishes.

Indeed, in her conclusion, Michael states that palliative care “remains committed to the ongoing accompaniment of our patients. Not abandoning them” and which is “the only plausible method of compassion and care.”

This surely is the most egregious and arrogant self-interest of all: patients must subject themselves to being accompanied by palliative care staff and their ‘interventions’ whether they want more or not.

On the contrary, to fail to hear and respect a genuine, informed and persistent request for a peaceful hastened death from a dying patient for whom this accords most firmly with his deeply held values and beliefs, is to abandon the patient.

Conclusion

Michael is of course entitled to her personal stance, and I celebrate her right to hold her views: for herself.

However, her ‘requirement’ that all Victorians be denied access to an option that four out of five believe to be moral — and instead subject themselves to interventions administered by Michael and her colleagues — reveals an unattractive arrogance.

It’s a shame that Catholic bioethics doesn’t teach more about reflection, especially as to whether one’s own beliefs ought to dictate and limit the choices of others with equally firmly held, though different, values.

In the meantime, Victorians are pawns to the tyranny of the Vatican as to whether there is a local healthcare facility that will hear and examine their request for a peaceful, assisted death in the face of terminal illness.

In many places, there won’t be.


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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, https://www.noeuthanasia.org.au/the_myth_of_a_pain_free_euthanasia_death.
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Terminal sedation is not an argument against assisted dying law reform.

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

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

1. Directly and foreseeably causing death

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

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

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

2. Inapplicable prior to 2–14 days before death

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

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

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

3. It doesn’t always help

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

4. It may violate the patient’s value system

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

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

5. It extinguishes the patient’s decisional capacity

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

6. Doctors’ intention not always clear-cut

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

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

7. Risk of coercion

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

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

8. Worse experiences for the bereaved

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

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

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

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

Incoherent professional association standards

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

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

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

Summary

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

 

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

 

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

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


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

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

 

References

  1. Somerville, M 2009, 'We can always relieve pain', Ottawa Citizen, (24 Jul).
  2. Morita, T, Chinone, Y, Ikenaga, M, Miyoshi, M, Nakaho, T, Nishitateno, K, Sakonji, M, Shima, Y, Suenaga, K, Takigawa, C, Kohara, H, Tani, K, Kawamura, Y, Matsubara, T, Watanabe, A, Yagi, Y, Sasaki, T, Higuchi, A, Kimura, H, Abo, H, Ozawa, T, Kizawa, Y, Uchitomi, Y, Japan Pain, PMR & Psycho-Oncology Study, G 2005, 'Efficacy and safety of palliative sedation therapy: a multicenter, prospective, observational study conducted on specialized palliative care units in Japan', J Pain Symptom Manage, 30(4), pp. 320-8.
  3. Maltoni, M, Pittureri, C, Scarpi, E, Piccinini, L, Martini, F, Turci, P, Montanari, L, Nanni, O & Amadori, D 2009, 'Palliative sedation therapy does not hasten death: results from a prospective multicenter study', Ann Oncol, 20(7), pp. 1163-9.
  4. Francis, N 2016, How bad research fuels dodgy claims, DyingForChoice.com, viewed 11 Mar 2016, http://www.dyingforchoice.com/f-files/how-bad-research-fuels-dodgy-claims.
  5. Twycross, R 2019, 'Reflections on palliative sedation', Palliative care, 12, pp. 1-16.
  6. Palliative Care Australia 2006, Policy statement on voluntary euthanasia, Canberra, pp. 2.
  7. Davis, MP 2009, 'Does palliative sedation always relieve symptoms?', Journal of Palliative Medicine, 12(10), pp. 875-877.
  8. Morita, T, Ikenaga, M, Adachi, I, Narabayashi, I, Kizawa, Y, Honke, Y, Kohara, H, Mukaiyama, T, Akechi, T & Uchitomi, Y 2004, 'Family experience with palliative sedation therapy for terminally ill cancer patients', Journal of Pain and Symptom Management, 28(6), pp. 557-565.
  9. Bruinsma, SM, Brown, J, van der Heide, A, Deliens, L, Anquinet, L, Payne, SA, Seymour, JE, Rietjens, JAC & on behalf of, U 2014, 'Making sense of continuous sedation in end-of-life care for cancer patients: an interview study with bereaved relatives in three European countries', Supportive Care in Cancer, 22(12), pp. 3243-3252.
  10. van Dooren, S, van Veluw, HT, van Zuylen, L, Rietjens, JA, Passchier, J & van der Rijt, CC 2009, 'Exploration of concerns of relatives during continuous palliative sedation of their family members with cancer', J Pain Symptom Manage, 38(3), pp. 452-459.
  11. Srinivasan, EG 2009, Bereavement experiences following a death under Oregon's Death With Dignity Act, Human Development and Family Studies, Oregon State University, pp. 127.
  12. Ganzini, L, Goy, ER, Dobscha, SK & Prigerson, H 2009, 'Mental health outcomes of family members of Oregonians who request physician aid in dying', J Pain Symptom Manage, 38(6), pp. 807-15.
  13. Wagner, B, Müller, J & Maercker, A 2012, 'Death by request in Switzerland: Posttraumatic stress disorder and complicated grief after witnessing assisted suicide', European Psychiatry, 27(7), pp. 542-546.
  14. Swarte, NB, van der Lee, ML, van der Bom, JG, van den Bout, J & Heintz, AP 2003, 'Effects of euthanasia on the bereaved family and friends: a cross sectional study', British Medical Journal, 327(7408), pp. 189-192.
  15. Palliative Care Australia 2018, National Palliative Care Standards, Griffith ACT, pp. 44.
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  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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