Blog by Neil FrancisPosted on Wednesday 18th October 2017 at 9:41pm
The Victorian parliament is debating the Government's Voluntary Assisted Dying Bill
Former Australian Prime Minister Paul Keating once famously branded the Senate “unrepresentative swill” for obstructing his legislative agenda. Today, the question of how representative our political masters are remains moot.
Major community support for VAD
Take voluntary assisted dying (VAD) for example. Poll after poll demonstrates that the overwhelming majority of Australians want this additional choice for people in extremis at the end of life. The impeccable Australian Election Survey (AES) conducted by Australian National University scholars last year confirmed that 77% of Australians want VAD reform, with 13% undecided and just 10% opposed.
Strong support (43%) is ten times greater than strong opposition (4%), and support is high across the political spectrum: amongst minor/independent (69%), Coalition (77%), Labor (80%) and Greens (87%) voters. Public support has been in the majority for more than four decades.
Political support missing in action
But since the Northern Territory Rights of the Terminally Ill Act in 1996, none of the many VAD Bills before various state parliaments has passed. And the Northern Territory’s Act was torn down by the federal parliament just eight months after coming into effect.
A 2008 university study of federal MP voting opportunities found 100% of Greens, 55% of Labor, and a paltry 17% of Coalition MPs voting in favour of VAD.
New analysis
Now, a new analysis of the ten state VAD Bills since 2000 where final divisions were called, offers further insights. It found 100% of Greens MP voting opportunities were in favour, along with 51% of Labor, 29% of minor party and independent, and a similarly paltry 17% of Coalition MPs. Excluding South Australia, whose parliament has debated the greatest number of VAD Bills, the Coalition support rate was just 9%.
Overall, while state Labor MP votes fell 29% short of Labor voter attitudes, Coalition MP votes fell an astonishing 60% short of Coalition voter attitudes. At the state level, Coalition MPs had the most voting opportunities — nearly half (48%). No wonder passing VAD Bills is challenging.
It begs the question, how is it that our legislative representatives fail to reflect clear public majority views on matters of conscience for so long?
Hidden reasons behind MP opposition
Obviously, lobbying on both sides of the conversation in part informs MPs’ views, but there are several more persuasive factors.
For a start, there’s a “truism” held by many MPs that their vote in favour of a VAD Bill would lose them more votes at a general election than would a vote against the Bill. However, the opposite has been demonstrated in multiplestudies.
Further, I’ve shown before that opposition to VAD is largely religious. A university study has also found that those who are more religious and who are politically engaged tend to hold very conservative views. So while there are religious MPs on both sides of politics, Coalition MPs are naturally more inclined to hold much more conservative views.
But that doesn’t fully explain the massive 60% representation gap on the Coalition side, either.
In good conscience?
A key factor lies in the seemingly reassuring principle of the “conscience vote.” The major parties have announced that their members are accorded a conscience vote (also known as a “free vote”) on the VAD Bill. That simply means that there’s no official published party policy on the matter and party members may vote freely on the basis of their own conscience.
There are two significant issues with this state of affairs.
The first is that the member may refer exclusively to their own conscience. But what if the MP’s conscience is at odds with the electorate’s? For my home state of Victoria, the 2016 AES study found 79% of the community in favour of VAD. There are 88 members of the Victorian parliament lower house, and just 40 members in the upper house. Therefore, it’s possible for as few as just 20 Victorian MPs to vote “no” in order to extinguish the will of 3.2 million Victorians (79% of 4.05 million Victorian voters).
If that weren’t enough, the second issue is that the right to ‘conscience’ is granted only in respect of the Bill itself, not on procedural matters about the Bill. It can make a huge difference.
How the parry works
Here’s what happened in 2008 when Victorian Greens MP Colleen Hartland’s VAD Bill was before the Legislative Council. MPs were afforded a conscience vote, and many of them had said they were supportive of VAD in general, but couldn’t support Hartland’s Bill in its current form. (That’s also a common ruse of MPs who in reality oppose the reform in principle but wish to appear ‘open minded’.)
When the final vote on Hartland’s Bill was lost, then Greens MP Greg Barber immediately moved a motion to refer the Bill to a parliamentary committee so that it could be improved to MPs’ satisfaction. Neither Labor nor Coalition parties afforded their members a conscience vote on this procedural matter, instead directing MPs to vote against such motions. The referral, which may have resulted in Victorians having wider end-of-life choices years ago, was cynically buried.
Most voters remain unaware of the shenanigans played in the corridors of power to achieve such results.
Australia’s special political conservatism
They’re not the only shenanigans, though. Another university study comparing federal MP conscience voting patterns in the UK, New Zealand and Australia found Australia to be different, accounting for why the UK and NZ have legalised marriage equality, while Australia hasn’t.
Firstly, the centre-left in Australia has a larger proportion of Catholic members than in the UK and NZ, accounting for some of the shortfall in Labor representation of progressive views.
Secondly, those amongst Coalition ranks, but with more liberal social consciences, had been lashed by Coalition party whips to vote against progressive reform. So while there was a public display of fairness and neutrality, the reality was quite different.
Borne out in state parliaments
These findings are replicated in Australian state parliament votes too, with Coalition MPs rarely if ever voting in favour of progressive social reform. Coalition MP votes on VAD including and since Hartland’s legislative attempt in 2008 are telling: in Victoria 2008 10:5 against, in Tasmania 2009 6:0 against; in Western Australia 2010 19:1 against; in NSW 2013 10:0 against; in South Australia 2016 14:7 against and in Tasmania 2017 13:1 against.
Rather than reflect 77% Coalition voter support for VAD, Coalition MP voting patterns reflect the highly negative stance of party leaders, whipped through the parliamentary party membership. For example, then WA Premier Mr Colin Barnett made it clear he thought assisted dying was “government-sanctioned killing”. Tasmanian coalition leader Mr Will Hodgman said that “protection for [vulnerable] people cannot be guaranteed.” Then-NSW Premier Mr Barry O’Farrell declared himself “strongly opposed”.
Back to Victoria’s Bill under debate
The situation in Victoria is looking somewhat more positive, with Premier Mr Daniel Andrews and many in his Cabinet publicly supporting reform. A lengthy, detailed, professional and well-resourced process has informed the crafting of the Bill.
However, opposition leader and would-be Premier Mr Matthew Guy has stated his resolute opposition to it and that he intends to vote “no”. That would mean he is quite comfortable for his own personal view to extinguish the contrary views also held in good conscience by 34,626 of the 43,831 voters in his own electorate of Bulleen, and 3.20 million of Victoria’s 4.05 million voters. (Electorate numbers as at 10 October 2017.)
An obvious solution
There’s an obvious solution for MPs whose own consciences disallow them from reflecting the overwhelming majority conscience of the electorate.
They could consider abstaining — simply absenting themselves from the chamber during the division. That would keep their own consciences intact while allowing the electorate’s conscience to be reflected.
I’m a constituent of Mr Guy’s. Over a period of months I made six robust attempts to meet with him to discuss these matters, especially the covert whip arrangements and the consideration of abstention. I can be persuasive in obtaining appointments, but my best efforts proved wholly unfruitful.
As I said to Mr Guy’s private assistant after the last failed attempt, voters could be forgiven for believing he’s more interested in meeting allegedly shady characters in fancy Brighton restaurants, than meeting with his own constituents.
Victorians are watching the parliamentary VAD debate. We’re taking notes that will inform our votes at the state election late next year.
Indications are at present there’s a good chance that Victorian MPs won’t be “unrepresentative swill”.
Fact file by Neil FrancisPosted on Thursday 25th May 2017 at 12:00am
Those actively opposing assisted dying laws are Australia's most religious. Photo: Donaldytong
A claim was recently made on ABC’s QandA that at least 70% of Catholics and Anglicans support assisted dying. The claim was challenged and a FactCheck prepared and vetted by scholars. They concluded that some but not all polls supported the statement. I show unambiguously that relevant polls do. I show further, as I have in the past, that opposition is largely associated with Australia's most religious.
In 2007, a Newspoll survey found that 74% of Catholics and 81% of Anglicans support assisted dying. The 2016 Australian Election Study (AES), run by scholars at Australian National University, found almost identical rates: 74% of Catholics and 79% of Anglicans. Although a majority of all religious denomination groups support assisted dying, opposition is highest among minor Christian denominations (Figure 1).
Figure 1: Attitudes toward assisted dying by major religious denominations Source: AES 2016. Note: Chr. = Christian
A significant majority of support for assisted dying was also found across all age groups, education levels, income levels, states, and major political party affiliations and religious denominations, with support amongst Australians overall at 77%.
Casting doubt
However, another poll cited in the FactCheck found far less support: the 2011 National Church Life Survey (NCLS). It found just 28% of Catholics and 25% of Anglicans supported assisted dying.
The problem with the NCLS poll is that it didn’t take a valid sample of Australian Catholics and Anglicans. It sampled mostly or only those who frequently attend religious services.
Views vary widely by attendance frequency
Figure 2 shows the level of support amongst the Australian public, by frequency of attending religious services. While just 2.4% of those who never attend religious services oppose assisted dying, 46.1% of those attending at least once a week oppose it.
Figure 2: Attitudes toward assisted dying by frequency of attending religious services Source: AES 2016
NCLS poll cannot answer the question
The NCLS results were even more negative than the AES ‘at least once a week’ results. That’s explained by the NCLS methodology. Firstly, occasional attenders were underrepresented, and non-attenders were excluded altogether. Secondly, more church employees (the most deeply committed and aligned with church policies) than others would have participated. Thirdly, responders may have felt pressured to toe the church line because the survey forms were collected by the churches themselves. And fourthly, those who disagreed with the church line would be less likely to participate.
ABC QandA question answered
So we can discount the NCLS poll because it was not suited to answer the question about all Australian Catholics and Anglicans.
On that basis, it is not only reasonable to say that “up to 70% of Catholics and Anglicans support assisted dying,” but to say that “at least 70% of Catholics and Anglicans support assisted dying.”
Religious connections of opposers
But, back to the opposition of assisted dying. AES data shows that 92% of those opposing and 94% of those strongly opposing assisted dying have a religious affiliation (self-identify with a religious denomination) or attend religious services. So, while a tiny minority of opposers had no religious affiliation nor attended religious services, almost all those opposing have a religious connection.
Frequent service attendance entrenches opposition
If we focus in on those who identify with a religious denomination and who disagree with assisted dying, we find that there’s a massive difference in opposition to assisted dying between the ‘at least once a week’ attenders and everyone else (Figure 3).
Figure 3: Frequency of attending religious services amongst those with a religious affiliation and who disagree with assisted dying Source: AES 2016
Not only are the majority of opposers weekly religious service attenders, but weekly attenders are more likely to be strongly opposed. This highlights the strong alignment with and commitment to religious teachings, which (with rare exceptions) oppose assisted dying.
If we define the most religious Australians as those who attend religious services monthly or more often and who self-identify with a religious denomination (“Regulars” in Figure 4), and who make up just 15.7% of the population, their attitudes are remarkably more opposed to assisted dying than all other Australians — by a factor of more than eleven to one.
Figure 4: Attitudes by religious service attendance plus denomination affiliation (“Regulars”) Source: AES 2016
Amongst the 84.3% of Australians who are not “Regulars”, almost all of them (85.7%) agree with assisted dying, and almost none of them (3.6%) disagree.
Demographic differences explained by religiosity
The variation in attitudes toward assisted dying by general demographics is largely explained by religiosity — defined here as ‘the frequency of attending religious services’.
For example, the increased opposition amongst older Australians is explained by their increased religiosity. The same applies to religious denomination affiliation (e.g. Catholics attend services more often than Anglicans), education, urban versus rural residence, and political party first preference.
Religiosity was the only variable that independently explained variations in opposition to assisted dying.
The double whammy — affiliation and attendance
Also informative is the comparison of those with or without a religious affiliation versus those who do and don’t attend religious services. (Australians fall into all four categories.)
Amongst those with no religious affiliation, people who do attend religious services are only slightly less likely (than those who don’t attend) to support assisted dying (-7%), and their difference in attitude is mostly to neutrality.
However, of those with a religious affiliation, people who do attend religious services are significantly less likely to support assisted dying (-27%), and the majority of their difference in attitude is opposition rather than neutrality.
Thus, those more deeply aligned with their religious denomination through service attendance are significantly more likely to oppose assisted dying.
Moderated by personal experience
The 2007 Newspoll study asked respondents if they had personal experience of someone close who was hopelessly ill and had wanted voluntary euthanasia.
Amongst those with no religious affiliation, this personal experience increased support for assisted dying by just 3.7%, because support was already very high: from 90.9% to 94.6%.
However, amongst those with a religious affiliation, personal experience increased support for assisted dying markedly by 15.2%: from 72.4% to 87.6%.
Thus, those attending religious services, yet with close, personal experience of hopeless illness with a desire for assisted dying, were significantly less likely to align with opposed religious doctrine.
The most religious are a small minority
With so much opposition amongst Australia’s most religious, why is overall support for assisted dying so high? It’s because Australia’s most religious are a small minority of the population.
Nearly half (48%) of Australians never attend religious services, two thirds (65%) attend less than once a year or never, and three quarters (75%) attend once a year or less, including never.
Those who attend religious services frequently (weekly or more often) comprise just 12% of the population, while those who attend regularly (monthly or more often which includes the weeklies) comprise 16%.
Religion in Australia has been declining for decades, and the fall is likely to continue (see Appendix A of the full report, here), meaning that support for assisted dying is likely to increase in the future.
Conclusions
I’ve previously demonstrated how all the signatories to a major anti-assisted dying advertisement were deeply connected with religion. The AES and other studies further our understanding of wider public attitudes toward assisted dying in Australia. They show that while a substantial majority of Australians support assisted dying, almost all the opposition to it is connected with religion, particularly amongst the most religious who are a small minority of the population.
Despite the religious connection of those opposed, there is ample, robust evidence that a great majority of Catholic and Anglican Australians support assisted dying, backing the claim made on national television.
Clergy opposing assisted dying are not representing the broader views of their flocks. Perhaps they may not see that as their role, and perhaps this misalignment of attitudes and beliefs is an example of why religion in Australia is declining.
However, reflecting the views of the great majority of the constituency is the role of politicians, who would do well to take note of this robust evidence of a significant majority of support for assisted dying.
Blog by Neil FrancisPosted on Sunday 19th March 2017 at 11:37pm
Oregon (left) and Washington legalised assisted dying by ballot in 1997 and 2008 respectively. Photos: Oregon Department of Transportation; Cacophony.
A scientific study just published in the New England Journal of Medicine reveals that residents of both Oregon and Washington states, which legalised assisted dying in 1997 and 2008 respectively—as well as establishing formal advance directive programs—are far more likely to experience the kind of death they prefer, and with better access to palliative care, than is the average USA resident.1
It's well-established that most westerners would prefer to die peacefully at home rather than in a medicalised or other institutional setting. Yet it is recognised by doctors and families alike that there is a kind of medical ‘conveyer belt’ to acute care at the end of life that tends to shunt the dying individual through to ICU—a place where more and more burdensome medical interventions are administered with less and less likelihood that they’ll actually provide any benefit. These kinds of deaths, with vigorous and invasive procedures performed on a frail person approaching a natural death, can lead to longer and more complex bereavement recovery for surviving loved ones.
It’s also claimed by opponents of assisted dying law reform that assisted dying is a ‘competitor’ of palliative and hospice care, and that legalisation of assisted dying would result in the deterioration or at least stunting of palliative care services.
This latest study, including longitudinal data, provides further evidence that such claims are not only false, but that the legalisation of assisted dying improves the focus on all end of life decision making, whatever those decisions are.
Avoiding burdensome and questionable invasive care
Figure 1: ICU was used in the last 30 days of life Percent of fee-for-service Medicare service beneficiary patients
Figure 1 shows that the ‘shunting’ of dying patients to ICU in the last 30 days of life is significantly lower in Oregon, which legalised assisted dying in 1997. Oregon also established a statutory comprehensive advance care directive (Physician Orders for Life Sustaining Treatment, or “POLST”) program earlier than other states, in 1993. Washington, which piloted a POLST program in 2000 and formally endorsed it in 2005 — and legalised assisted dying by ballot in 2008 — was already trending down from the national average (close to it in 2000), as public discussion of end of life decisions ratcheted up in the lead-up to reform. Since the POLST endorsement and ballot reform, Washington has continued to trend well below the national average.
Facilitating a non-institutionalised death
Figure 2: Patient was discharged from hospital in the last 30 days of life
Figure 2 shows that both Oregon and Washington have continued to trend above the national average for facilitating patient wishes to die at home after a stay in acute care in the last 30 days of life.
Hospice care received at home
Figure 3: Dying patient received hospice care at home
Figure 3 shows that by 2000, Oregon was already providing home hospice services at 2.1 times the national average, but that as the national average plateaued from 2005, the rate in Oregon continued to rise significantly, reaching 2.5 times the national average in 2013. To qualify for an assisted death, Oregon and Washington residents must be certifed by their doctor as expected to die within six months—which qualifies the patient for free hospice care.
Washington was close to the national average on the delivery of home hospice care prior to assisted dying law reform, beginning to deviate as conversations were held about permitting assisted dying and its POLST program was endorsed in 2005, increasing to 1.8 times the national average in 2013.
Death preferred at home
Figure 4: The individual died at home
Figure 4 shows that both Oregon and Washington states continue to facilitate a private home-based death, according to patient and family wishes, at a rate considerably higher than the national average.
Conclusion
The results of this USA study mirror the kinds of findings from Dutch and Belgian research, which I have previously published,2 and another USA report from the Journal of Palliative Medicine which placed both Oregon and Washington amongst the top eight states for palliative care access in hospital settings.3 This study furthers these insights by showing that access to palliative care services in home settings is also significantly higher than the national average in Oregon and Washington.
Assisted dying opponents’ claims that legalising assisted dying would result in a deterioration or stunting of end of life decisions and in particular access to palliative care are contradicted by the data from lawful jurisdictions.
References
Tolle, SW & Teno, JM 2017, 'Lessons from Oregon in embracing complexity in end-of-life care', New England Journal of Medicine, 376(11), pp. 1078-1082.
Morrison, RS, Augustin, R, Souvanna, P & Meier, DE 2011, 'America's care of serious illness: A State-by-State report card on access to palliative care in our nation's hospitals', Journal of Palliative Medicine, 14(10), pp. 1094-1096.
Fact file by Neil FrancisPosted on Thursday 7th July 2016 at 10:19pm
Lead author Professor Ezekiel Emanuel discusses the findings of the JAMA study.
Several of the world's foremost researchers in medical end-of-life matters have released a detailed and comprehensive review of the practice of assisted dying in lawful jurisdictions around the world. Published in the Journal of the American Medical Association, it does not support slippery slope hypotheses.
Professors from universities in the USA, the Netherlands and Belgium studied data from government and statutory authority reports, primary scientific studies and other sources to examine how assisted dying has been practiced in different jurisdictions around the world where it is lawful in one form or another: self-administered medication (physician-assisted dying) or physician-administered medication (active voluntary euthanasia).1
Their primary conclusion is that:
"Euthanasia and physician-assisted suicide are increasingly being legalized, remain relatively rare, and primarily involve patients with cancer. Existing data do not indicate widespread abuse of these practices."
Key findings
Key findings include:
Public opinion favouring assisted dying in developed countries has been increasing, or remained stable at high levels of approval.
The trends seem to correlate with decreasing religiosity in Western countries.
The only place where assisted dying approval appears to be decreasing is in eastern Europe, where religiosity has been increasing.
Approval amongst physicians seems to be consistently lower than amongst the public.
Assisted dying occurs everywhere, including juridictions where it is unlawful (as I have previously reported).
Most individuals who choose assisted dying have advanced cancer (as I have previously reported).
Supposedly 'vulnerable' groups are not represented in assisted dying figures at rates any higher than their presence in the overall population.
Numbers of assisted deaths in lawful jurisdictions continue to increase, but represent a tiny minority of deaths.
In jurisdictions where only self-administration is permitted, assisted deaths represent around 0.3% of all deaths.
In jurisdictions where physicians may administer, assisted deaths represent around 3–5% of all deaths.
Assisted deaths for minors and those with dementia are a very small minority of cases (as I have previously reported).
The dominant reasons for requesting assisted death include loss of autonomy and dignity and the inability to enjoy life and regular activities; not physical pain.
Doctors still report that honouring a request for assisted death is emotionally burdensome; not a routine or welcomed option.
"In no jurisdiction was there evidence that vulnerable patients have been receiving euthanasia or physician-assisted suicide at rates higher than those in the general population."
Complication rates
One aspect of the study is worthy of special mention: the small rate of assisted dying procedure complications. The available data suggests that complications may occur more often for self-administered medication than for physician administration:
For self-administration—
Difficulty in swallowing in 9.6% of cases
Vomiting or seizures in 8.8% of cases
Awakening from coma in 12.3% of cases
For physician administration—
Technical problems such as difficulty in finding a suitable vein in 4.5% of cases
Vomiting or seizures in 3.7% of cases
Awakening from coma in 0.9% of cases
This data is however of Dutch practice in the 1990s, before assisted dying was codified in statute—at a time when practice was poorly defined and a range of drugs, including opioids, were widely used. Now, practice is well-defined with almost universal use of barbiturates. The researchers expressly note that these complication rates may well have reduced.
Further, the authors refer to more recent data from Oregon and Washington which indicate very much lower complication rates (in those jurisdictions for self-administration only):
In Oregon, the complication rates are around 2.4% for regurgitation and 0.7% for awakening from coma.
In Washington, the complication rates are around 1.4% for regurgitation, plus a single case of seizure.
The importance of context
It is worth comparing the complication rates of assisted dying procedures with rates for other medical interventions to provide an appropriate context so that they may be realistically interpreted.
For example, a study of common over-the-counter analgesics for short-term pain management2 found that significant adverse effects occurred amongst 13.7% of ibuprofen users, 14.5% of paracetamol useres and 18.7% of aspirin users.
In another example, an anlaysis of primary research about surgical outcomes found that 14.4% had adverse events, almost half of which (47.5%) were moderate to fatal in severity.3
Conclusion
The study is a solid synthesis of research data and indicates that assisted dying is accessed sparingly and in accordance with the intentions of each legislature.
The adverse event rate for assisted dying appears to be substantially lower than the rate of adverse events in the use of common over-the-counter analgesics and in surgery.
References
Emanuel, EJ, Onwuteaka-Philipsen, BD, Urwin, JW & Cohen, J 2016, 'Attitudes and practices of euthanasia and physician-assisted suicide in the united states, canada, and europe', JAMA, 316(1), pp. 79-90.
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.
Anderson, O, Davis, R, Hanna, GB & Vincent, CA 2013, 'Surgical adverse events: a systematic review', Am J Surg, 206(2), pp. 253-62.
Fact file by Neil FrancisPosted on Wednesday 4th May 2016 at 3:11am
In 2002 the Dutch Euthanasia Act came into effect. Commencing in 2003, the Netherlands Euthanasia Commission has published annual reports of deaths that occur under the Act. It has just published its annual report for the calendar year 2015. The data shows that the Euthanasia Act is working as the Dutch Parliament intended.
Number of assisted death cases
There were 5,516 reported cases of assisted dying in 2015, with 208 cases of patient self-administration and 5,277 cases of doctor administration. This is an overall increase of 4.0% on the 2014 figures (5,306 total cases). Assisted deaths represented 3.9% of all Dutch deaths in 2015.
Trend in assisted dying numbers
Comment has been made in past years about the rate of increase of assisted deaths in the Netherlands. The trend in number of cases of this nature was always likely to be an 'S'-shaped curve, a trend which the 2015 data supports as the annual increases level off (Figure 1) at a small percentage of all deaths.
Figure 1: Netherlands assisted dying deaths as a percentage of all deaths
Note: The Netherlands total deaths count for 2015 is not yet published: its value was estimated by extrapolation from previous years.
Figure 2 shows the year-on-year rate of change of assisted dying including a second-order polynomial best-fit trend line which illustrates that the rate of increase has slowed and the overall rate is leveling out.
Figure 2: Year-on-year change in the proportion of assisted dying cases
Underlying health conditions
Cancer is by far the greatest underlying health problem affecting those who choose assisted dying in the Netherlands (Figure 3). This is unsurprising since cancer is now the leading cause of death in the Netherlands, accounting for 30% of all deaths.
Figure 3: Underlying illnesses of Dutch assisted dying cases (proportion of all deaths)
Notes: Neuro=neurodegenerative diseases, Mental=mental illnesses other than dementia, Multi=multi-functional old-age decline, Other=all other illness types
While cancer accounts for the greatest numeric increase in reported assisted dying cases, other illnesses are increasing as a proportion of cases (Figure 4). Cardiopulmonary illness now underlies around 8% of cases (cardiac pathology is the second leading cause of death in the Netherlands) and neurodegenerative disease around 6% of cases.
Figure 4: Underlying illnesses of Dutch assisted dying cases (proportion of illnesses)
Multi-functional old-age decline underlies around 3-4% of cases. Untreatable mental illness is a rare health factor in Dutch assisted dying, with dementia present in 1 in 50 assisted deaths (2%) and other mental illness in 1 in 100 deaths (1%) .
Where assistance was rendered
Around 88% of Dutch people would prefer to die in their own home or similar care home, 10% in hospice and around 2% in hospital (Abarshi et al 2009). Those using assisted dying largely achieve these goals (Figure 5).
Figure 5: Assisted dying place of death (proportion of assisted deaths)
Around 80% of assisted deaths occur in the patient's own home. Since the Euthanasia Act came into effect, the proportion of deaths occurring in hospices and in relative's homes ("other") increased from around 2.5% to 8% (an approximately 5.5% rise), and the proportion of deaths occurring in hospitals decreased from around 11% to 3.5% (an approximately 7.5% drop). There was a slight increase of less than 2% in the proportion of assisted deaths in residential care settings, and no increase in nursing home settings.
The data confirms that assisted dying patients are usually dying in their preferred location and that 'institutionalisation,' particularly in nursing homes, is not a risk factor for assisted dying as is sometimes claimed. The greatest change in place of death since the Euthanasia Act came into effect is a decrease in hospital deaths and a complimentary increase in hospice care deaths, reflecting good palliative care practice.
Standard of practice
Of the 5,526 assisted dying cases reported in 2015, 4 were judged by the Euthanasia Committees as not meeting all necessary due care criteria: a compliance rate of 99.93% and non-compliance rate of 0.07%.
Summary
The 5,516 Dutch assisted dying cases for 2015 represents an increase of 4% on 2014 cases, and 3.9% of all Dutch deaths in 2015.
The rate of increase has slowed in line with expectations.
The great majority of cases involve cancer, the Netherlands' leading cause of death.
Assisted dying under other medical conditions is uncommon or rare.
Assisted dying usually occurs where the patient prefers, most often in their own home.
Assisted dying has decreased in hospitals and commensurately increased in hospices, in line with good palliative care practice.
The rate of compliance with all legal requirements in 2015 was 99.93%.
Some commentators have criticised the numbers of Dutch using the Euthanasia Act even though the rate remains a very small proportion of all deaths (3.9%). The question, however, is not 'how many', but whether these cases represent the contexts and circumstances the legislature had in mind when crafting the Euthanasia Act, which stipulates a raft of conditions and processes. It is clear that the legislature's intent has been upheld.
References
Abarshi, E, Onwuteaka-Philipsen, B, Donker, G, Echteld, M, Van den Block, L & Deliens, L 2009, 'General practitioner awareness of preferred place of death and correlates of dying in a preferred place: a nationwide mortality follow-back study in the Netherlands', Journal of Pain and Symptom Management, vol. 38, no. 4, pp. 568-77.
Blog by Neil FrancisPosted on Sunday 15th November 2015 at 2:38am
ABC TV's Q&A panel discusses assisted dying law reform on 9th Nov 2015
In a recent opinion piece in the ABC’s Religion and Ethics section, Bernadette Tobin1 rails against assisted dying, commencing with the criticism that the ABC’s Q&A discussion on the subject this week “lacked precision.” But Tobin’s opinion piece itself commits exactly this offence, as I explain.
For the sake of brevity I’ll only quickly mention that Tobin’s piece also fails on the score of accuracy. For example, she wrongly asserts that “euthanasia” means a doctor administering lethal medication to a patient. It doesn’t. “Euthanasia” simply means “good death”: nothing more and nothing less, regardless of how it occurs. Tobin also asserts that voluntary euthanasia in lawful jurisdictions has caused non-voluntary euthanasia to develop. This is the polar opposite of published empirical research evidence.
But back to precision. Tobin employs two imprecise and deeply flawed arguments in her objection to assisted dying. She variously rolls them in together, so let’s unpack what they are: (A) the “it’s only fair” slippery slope, and (B) “it’s OK if you don’t mean it”.
A: The “It’s only fair” slippery slope
Tobin directly links assisted dying for the terminally ill to “anyone who is in pain, discomfort, constipated, incontinent, depressed, anxious and so on” by way of potential “benefit”. She conjectures that increasing the restrictions to who may qualify, and the process of qualification, would then be “unfair” to these others. She then goes on to extend the argument to those lacking in decisional capacity such as infants and those with Alzheimer’s. Surely, she says, “it would be ‘unfair’ to deny these people the ‘benefit’ that we will make available to those who are able to request it?”
Slippery slope indeed. And it’s wrong. Let me illustrate how, using a topic familiar in political debate over recent years: same-sex marriage.
Opponents of same-sex marriage law reform, when using arguments of the kind Tobin offers (as they often do), say that we can’t allow two men to marry, or two women to marry, because then we would have to allow three or more people to marry. Further down the slippery slope, we would have to allow people to marry animals. Don’t laugh: such things have been argued.
Next—given that under the Corporations Act 2001 (Cth), companies, owners’ corporations and incorporated associations are at law ‘persons’, and now that persons may marry—it would be “unfair” (note that I’ve used imprecision quotation marks around the word as Tobin does) to disallow people from marrying companies and companies from marrying each other.
Finally, using Tobin’s own line of argument, it would be “unfair” to deny infants and those with Alzheimer’s being married off for the alleged “benefit” (those quotation marks again) that everyone else is enjoying, so we must as an unavoidable consequence of the first step of allowing same-sex marriage, allow arranged marriages for babies and those with advanced dementia.
By now it’s easy to spot two terminal flaws in Tobin’s argument.
Firstly, the use of just one criterion (“fairness”—which she leaves imprecisely undefined) as the sole basis for decision making about this legislative reform is indefensible. What about other critical factors such as well-informed, rational, decisional capacity, judging and weighing what a “benefit” is, in the face of intolerable and unrelievable suffering, consistent with one’s own values and beliefs, who may decide, and the right not to participate?
Secondly, any slippery slope’s purported summit (from which changes are argued only to slip downwards) is deeply rooted in the normativity of the present. We are used to marriage being between a man and a woman. In our relative comfort we accept it as ‘normal,’ ‘good’ and the ‘right thing’.
In decision-making scholarship this normativity is known as “anchoring”. Like an anchor around which a boat will swing according to the wind and tide, we take the pivot point (the anchor of the now), as the natural starting point for future decisions, comparing changes only to the present state of affairs.
But it isn’t a valid anchor, and assuming that it is seriously biases our thinking. We need cast our anchor back just one mooring from the current point to see how the anchor tints our decision-making spectacles:
“We can’t allow a man and a woman to marry, because then it would be unfair to not allow two men to marry, or two women to marry, and then…”
Clearly, it is imperative that we outlaw marriage altogether.
The upshot of this slippery slope, when followed properly to its own logical conclusions, is that we must deny all rights because we can confect a slippery slope into a hypothetical moral abyss for any right.
B: It’s OK if you don’t mean it
Tobin further argues that relieving distressing symptoms “is good palliative care, even when that relief happens to hasten death.”
She doesn’t name it explicitly, but this is the doctrine of double effect, an argument first crafted in the thirteenth century by Catholic priest Thomas Aquinas. The doctrine suggests that a bad consequence of an action is justifiable if the agent did not intend the bad effect, if the intended good effect outweighs the bad effect, and if the agent applies diligence in attempting to minimise the bad effect. Notice that the doctrine speaks directly about the intentions of the agent and is silent on the views of the person upon whom the agent might act.
Tobin rails against a doctor intentionally administering a lethal dose to a patient (regardless of whether it is the dying patient’s most fervent wish) and slams the expressions “dying with dignity” and “aid in dying” as “fudges”.
Yet the doctrine of double effect, for which she argues in support, is itself a fudge because it says:
“It’s OK to for a doctor to decide to and actually kill their patient (after all, they hastened the patient’s death), as long as they don’t mean to, and they mean well.”
What kind of standard is the secret stuff that goes on inside a doctor’s head without reference of any kind to the patient’s own views and desires, when compared to a fully informed, documented and tested request from the patient?
It’s no wonder that many scholars (as do I) consider the doctrine of double effect problematic.
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Bernadette Tobin is the Director of the Plunkett Centre for Ethics, a joint initiative of St Vincent’s Hospital, Sydney, and Australian Catholic University (ACU). According to ACU, a core mission of the Centre is to “bring a Catholic perspective to all its endeavours”.2
It’s unsurprising then that I detected neither broad thrust nor any detail of Tobin’s ABC opinion piece that deviated from the views of the Vatican. So be it.
There are many points on which Tobin and I agree, such as the potential benefits of palliative care for the dying. I argue, though, that basic scrutiny of the proffered 'principles' reveal them as deeply flawed and unpersuasive.
Blog by Neil FrancisPosted on Sunday 23rd August 2015 at 10:00pm
ABC journalists Jesse Dorsett and Eleni Roussos recently reported remarks made by the Northern Territory (Australia) Health Minister John Elferink, about the cost of supporting dying patients in the last year of life. Elferink said that dying patients could be personally persuaded to forgo medical treatment specifically in order to have more money available for their grandkids' 'opportunities'. Why is he wrong and what should he do about it?
Stating that "we've pretty much reached the limit of how old we can grow as a species", Minister Elferink estimated that elderly people with terminal illness cost the Northern Territory $1 million in health care costs in the last year of life. Even more astonishingly, he opined that the dying might be persuaded to obligingly shuffle off this mortal coil with the argument that "we can continue treatment but by discontinuing treatment your grandchildren would have a better opportunity" and "think of the work that could be achieved ... in the first year of life with $1 million".
He acknowledged that his remarks would be controversial.
No kidding.
Here are some reader comments from NT News:
"The Elf should be sacked. To say the seniors are a waste of money is abhorrent." — T. Miller
"Watch out Elf, you'll be old one day too." — Elli
"I worked all my life until 69 and paid taxes but judging from your comments us oldies are not worth saving." — Maree
"Hopefully he will lose his seat at the next election having shown us what an uncaring person he is. His statement is an insult to seniors and their loving families too." — Sue
What's wrong with his argument that ill seniors ought to nobly sacrifice themselves at the altar of general public 'good'? Plenty: but let's stick with just three, beyond the obvious fact that Northern Territory seniors are seriously offended by his comments and they vote.
Firstly, this is cheap dog-whistle politics that once again stupidly pitches one Australian against another (remember the infamous 'Leaners versus Lifters' campaign last year?) at the expense of insights and innovative solutions that satisfy everyone's needs.
Secondly, his estimate of the average cost of last-year-of-life medical costs beggars belief.
In a careful analysis of the cost of the last year of hospital care for New South Wales patients, Kardamanidis and colleagues1 found they varied from around $7,000 to $18,000. For the sake of argument, let's use a round figure of $15,000. And, given these are 'hospital' costs (where most dying people end up) but don't cover everything like pharmaceuticals, home care and the like, let's double it to $30,000. That's fairly consistent with figures from the USA, and is likely to be replicated across Australia.
But, heck, the Northern Territory is a vast place with many remote communities, so let's toss in an extra average $20,000 for the Royal Flying Doctor Service on top. That's a total average of $50,000.
Yet John Elferink's 'estimate' is a jaw-dropping twenty times even that generous figure. Is he off with the fairies?
Kardamanidis' study adds another dimension to our insights, too. They found that the average cost of hospital care decreased with old age: $17,927 for 65–74yo; $14,498 for 75–84yo; $10,403 for 85–94yo; and $7,028 for 95+yo. The very elderly dying use hospital services far less than those less old.
The Minister's perceptions and ageist 'formula' for self-sacrifice is seriously at odds with actual evidence.
And thirdly, his superficial, combative assessment quite overlooks excellent and readily-available solutions. It's well-established that higher differential end-of-life healthcare costs are significantly associated with attemps at life-sustaining ICU interventions (e.g. a UK study by Hanchate and colleagues2).
But there's more. An extensive multi-centre USA study by Zhang and colleagues3 reveals that simply by having better conversations with their doctors, advanced cancer patients not only reduced the amount of medical interventions, but achieved better quality of death.
By improving real conversations about the the likelihood of futility versus effectiveness of medical interventions at the end of life, balanced with information about the invasiveness or burden of enduring them, patients themselves can avoid interventions they judge to be of no net value, or even counterproductive.
So, Minister, quit the ill-informed and cheap political shots. Seek informed and practial advice and get on with the job of governing for all Territorians. Implement policies that encourage and facilitate real and meaningful conversations between patients and their doctors at end of life. The health bill will naturally go down for ethically sound—rather than ethical stink-bomb—reasons.
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Kardamanidis, K, Lim, K, Da Cunha, C, Taylor, LK & Jorm, LR 2007, 'Hospital costs of older people in New South Wales in the last year of life', Medical Journal of Australia, vol. 187, no. 7, pp. 383-386.
Hanchate, A, Kronman, AC, Young-Xu, Y, Ash, AS & Emanuel, E 2009, 'Racial and ethnic differences in end-of-life costs: why do minorities cost more than whites?', Archives of Internal Medicine, vol. 169, no. 5, Mar 9, pp. 493-501.
Zhang, B, Wright, AA, Huskamp, HA, Nilsson, ME, Maciejewski, ML, Earle, CC, Block, SD, Maciejewski, PK & Prigerson, HG 2009, 'Health care costs in the last week of life associations with End-of-life conversations', Archives of Internal Medicine, vol. 169, no. 5, pp. 480-488.
Update 25th August
Minister Elferink phoned me directly to put his case. We had a respectful if brief conversation (he was in a Parliamentary session). He said that the journalist's report had misrepresented his statements. We agreed that at the very least, the remarks he made were injudicious in the context of end-of-life, and I reiterated that I thought suggesting in any manner that people should give up part of their lives for the economic benefit of others was repugnant. I also reiterated that should the NT Government choose to invest a modest sum in the education of doctors in how to hold respectful, open conversations with patients and in a way that the truly listened to both what was being said as well as left unsaid, that patients would far less often choose futile and burdensome treatments they really didn't want. This would lead to less stress on the patient, their families and healthcare workers, and have the added benefit not only of a better quality of death, but a significantly reduced state healthcare budget.
I hope the Minister takes good evidence and advice on board, and adjusts his stance and the NT Government's approach to medical end-of-life decisions.
Figure 1: Attitudes toward assisted dying by major religious denominations
Figure 2: Attitudes toward assisted dying by frequency of attending religious services
Figure 3: Frequency of attending religious services amongst those with a religious affiliation and who disagree with assisted dying
Figure 4: Attitudes by religious service attendance plus denomination affiliation (“Regulars”)
Figure 1: ICU was used in the last 30 days of life
Figure 2: Patient was discharged from hospital in the last 30 days of life
Figure 3: Dying patient received hospice care at home
Figure 4: The individual died at home
Figure 1: Netherlands assisted dying deaths as a percentage of all deaths
Figure 2: Year-on-year change in the proportion of assisted dying cases
Figure 3: Underlying illnesses of Dutch assisted dying cases (proportion of all deaths)
Figure 4: Underlying illnesses of Dutch assisted dying cases (proportion of illnesses)
Figure 5: Assisted dying place of death (proportion of assisted deaths)
