Fact file by Neil FrancisPosted on Monday 8th April 2019 at 2:47am
Terminal sedation is not an argument against assisted dying law reform.
Opponents of assisted dying often claim that the appropriate response to refractory symptoms at end of life is terminal sedation — also known as palliative sedation or continuous deep sedation.e.g. 1 Terminal sedation is the administration of sedatives so as to render the patient unconscious until death. Thus, the patient’s active experience of suffering is removed, even if the underlying causes of the suffering are not.
Terminal sedation can help in some cases of end-of-life suffering, but it remains a problematic practice — and not a substitute for lawful assisted dying — for eight broad reasons.
1. Directly and foreseeably causing death
Unless the patient is already likely to die of her illness within a few days, it is the withholding of artificial nutrition and hydration during terminal sedation that causes the patient’s death. Lack of fluids causes circulatory collapse and organ failure within 14 days; less if the patient is frail.
In addition, at least one study has found that the terminal sedation medication itself can cause depression of respiration and/or circulation, directly resulting in death in 3.9% of cases.2 Another study purporting to show no survival difference in patients given terminal sedation3 has been exposed as deeply scientifically flawed.4
While opponents of assisted dying usually claim that the intention of terminal sedation is the relief of symptoms and not the hastening of death (their fundamental objection to assisted dying), in practice, terminal sedation can directly and foreseeably cause death.
2. Inapplicable prior to 2–14 days before death
A standard of practice in terminal sedation in many jurisdictions is that it should be used to address refractory symptoms only if the patient’s death is anticipated within hours or days, and in any case less than 14 days.5
However, intolerable and intractable symptoms often occur much earlier, for example amongst those with metastatic cancer where death is still weeks off, or those with a progressive degenerative neurological condition such as motor neuron disease, who may have several months to live.
Thus, terminal sedation is not a practical solution to intractable symptoms in many cases.
3. It doesn’t always help
Palliative Care Australia’s acknowledgement that even best practice can’t always alleviate intolerable suffering at end of life6 is confirmed by a study into terminal sedation practice which found that, in contrast to popular belief that it alleviates (the patients’ conscious awareness of) all suffering, it was ineffective in 17% of cases.7
4. It may violate the patient’s value system
Most calls for terminal sedation as “the answer” to assisted dying law reform focus on the views of the doctor, for whom this is another familiar “intervention”. However, terminal sedation may be unacceptable to the patient.
A patient may deeply believe that being forced to dehydrate to death — unconscious in a bed for a couple of weeks — to be an anathema to her most deeply-held values and sense of self as an active participant in her own life trajectory. This patient may profoundly prefer another route whose equally caused and foreseeable consequence is death: voluntary assisted dying, an option that gives her the chance to say goodbye to loved ones at a time of her own choosing.
5. It extinguishes the patient’s decisional capacity
Rendering the patient unconscious extinguishes her decision-making capacity. The patient can no longer participate in her own treatment decisions unless terminal sedation is ceased, she regains consciousness and becomes aware of her intolerable suffering once more.
6. Doctors’ intention not always clear-cut
When a doctor administers terminal sedation to a patient, the doctor’s intention is not always clear-cut. The doctor may intend to alleviate the patient’s suffering and/or intend to hasten death.
The administration of a single large bolus of sedatives is generally indicative of an intention to hasten death, in which case the doctor in likely to be investigated and prosecuted. However, the administration of increasing doses of sedatives is less clear: significantly increasing titrations of sedatives may be necessary to alleviate intractable symptoms, or they may be an intention to hasten death.
7. Risk of coercion
There is a conceptual risk that greedy relatives, service providers who need the patient’s bed, and others, might inappropriately persuade the patient to opt for a death hastened by terminal sedation, a similar theoretical risk to that in assisted dying.
However, unlike assisted dying which under statutory law is an express, fully informed, independently examined and documented desire and intention to hasten death, there are no statutory requirements in Australia regarding testing of desire, informedness, intention or possible coercion in terminal sedation. This is incoherent.
8. Worse experiences for the bereaved
Studies have found a significant minority of relatives of patients receiving terminal sedation are quite distressed by the experience. Problems causing distress include concern about the patient’s welfare and terminal sedation’s failure to address symptoms, burden of responsibility for making the decision, feeling unprepared for changes in the patient’s condition, short time to the patient’s death and whether terminal sedation had contributed to it, feeling that healthcare workers were insufficiently compassionate, and wondering if another approach would have been better.e.g.8,9 Periods of longer terminal sedation may be more distressing than shorter periods.10
In contrast, an Oregon study found that the bereaved from assisted deaths appreciate the opportunity to say goodbye, to know that the choice was the deceased’s wish, that the deceased avoided prolonged suffering, that the choice was legal, and they were able to plan and prepare for the death.11
Another Oregon study found that the mental health outcomes of bereaved from assisted deaths were no different from the bereaved from natural deaths.12 Bereaved from assisted deaths were more likely to believe that the dying person’s wishes had been honoured and were less likely to have regrets about the death.
A Swiss study found the rate of complicated grief after assisted death was comparable to the general Swiss population,13[^] while a Dutch study found bereavement coping in cancer was better after assisted death than after non-assisted death.14
Incoherent professional association standards
Neither the Australian Medical Association nor Palliative Care Australia have guidelines for doctors for the practice of terminal sedation.[*] Indeed, even Palliative Care Australia’s carefully reviewed and updated national standards released in late 2018 don’t mention sedation at all.15
In contrast, in countries where assisted dying is now lawful, clear and specific frameworks have been developed to guide the practice of terminal sedation: in the Netherlands,16 Canada,17 and Belgium.18 This deliberative development and implementation points to continued improvement in (not deterioration of) professional medical practice across the board when assisted dying is legal.
Given the profound issues in terminal sedation as in voluntary assisted dying, the failure of the peak Australian medical associations to publish guidelines on terminal sedation, while opposing assisted dying for perceived issues in its implementation, is incoherent and indefensible.
Summary
Palliative and medical care can never address all profound suffering at the end of life, regardless of funding or organisation: some kinds of suffering have no relevant or effective medical interventions, and even terminal sedation may be inapplicable or ineffective. To claim that palliative care is always the answer is a “monstrous arrogance”19 and “represents the last vestiges of [medical] paternalism”.20
"It is clear that improving palliative care will not remove the need for legalizing assisted dying, and that legalizing assisted dying need not harm palliative care.”21
While terminal (palliative) sedation may help a minority of patients, it's a problematic practice that is often not a practical solution to refractory symptoms at end of life.
Terminal sedation is not a substitute for lawful assisted dying choice.
[^] Slightly elevated levels of PTSD were found amongst the bereaved (compared to the general population), but it was not established whether this would have been different from the trauma of experiencing continued suffering and deterioration or different from PTSD rates of those who had recently lost a loved one by any other means, including terminal sedation.
[*] Revealed through direct correspondence between myself and the two associations.
References
Somerville, M 2009, 'We can always relieve pain', Ottawa Citizen, (24 Jul).
Morita, T, Chinone, Y, Ikenaga, M, Miyoshi, M, Nakaho, T, Nishitateno, K, Sakonji, M, Shima, Y, Suenaga, K, Takigawa, C, Kohara, H, Tani, K, Kawamura, Y, Matsubara, T, Watanabe, A, Yagi, Y, Sasaki, T, Higuchi, A, Kimura, H, Abo, H, Ozawa, T, Kizawa, Y, Uchitomi, Y, Japan Pain, PMR & Psycho-Oncology Study, G 2005, 'Efficacy and safety of palliative sedation therapy: a multicenter, prospective, observational study conducted on specialized palliative care units in Japan', J Pain Symptom Manage, 30(4), pp. 320-8.
Maltoni, M, Pittureri, C, Scarpi, E, Piccinini, L, Martini, F, Turci, P, Montanari, L, Nanni, O & Amadori, D 2009, 'Palliative sedation therapy does not hasten death: results from a prospective multicenter study', Ann Oncol, 20(7), pp. 1163-9.
Twycross, R 2019, 'Reflections on palliative sedation', Palliative care, 12, pp. 1-16.
Palliative Care Australia 2006, Policy statement on voluntary euthanasia, Canberra, pp. 2.
Davis, MP 2009, 'Does palliative sedation always relieve symptoms?', Journal of Palliative Medicine, 12(10), pp. 875-877.
Morita, T, Ikenaga, M, Adachi, I, Narabayashi, I, Kizawa, Y, Honke, Y, Kohara, H, Mukaiyama, T, Akechi, T & Uchitomi, Y 2004, 'Family experience with palliative sedation therapy for terminally ill cancer patients', Journal of Pain and Symptom Management, 28(6), pp. 557-565.
Bruinsma, SM, Brown, J, van der Heide, A, Deliens, L, Anquinet, L, Payne, SA, Seymour, JE, Rietjens, JAC & on behalf of, U 2014, 'Making sense of continuous sedation in end-of-life care for cancer patients: an interview study with bereaved relatives in three European countries', Supportive Care in Cancer, 22(12), pp. 3243-3252.
van Dooren, S, van Veluw, HT, van Zuylen, L, Rietjens, JA, Passchier, J & van der Rijt, CC 2009, 'Exploration of concerns of relatives during continuous palliative sedation of their family members with cancer', J Pain Symptom Manage, 38(3), pp. 452-459.
Srinivasan, EG 2009, Bereavement experiences following a death under Oregon's Death With Dignity Act, Human Development and Family Studies, Oregon State University, pp. 127.
Ganzini, L, Goy, ER, Dobscha, SK & Prigerson, H 2009, 'Mental health outcomes of family members of Oregonians who request physician aid in dying', J Pain Symptom Manage, 38(6), pp. 807-15.
Wagner, B, Müller, J & Maercker, A 2012, 'Death by request in Switzerland: Posttraumatic stress disorder and complicated grief after witnessing assisted suicide', European Psychiatry, 27(7), pp. 542-546.
Swarte, NB, van der Lee, ML, van der Bom, JG, van den Bout, J & Heintz, AP 2003, 'Effects of euthanasia on the bereaved family and friends: a cross sectional study', British Medical Journal, 327(7408), pp. 189-192.
Palliative Care Australia 2018, National Palliative Care Standards, Griffith ACT, pp. 44.
Verkerk, M, van Wijlick, E, Legemaate, J & de Graeff, A 2007, 'A national guideline for palliative sedation in the Netherlands', J Pain Symptom Manage, 34(6), pp. 666-70.
Dean, MM, Cellarius, V, Henry, B, Oneschuk, D & Librach, LS 2012, 'Framework for continuous palliative sedation therapy in Canada', J Palliat Med, 15(8), pp. 870-9.
Broeckaert, B, Mullie, A, Gielen, J, Desmet, M, Declerck, D, Vanden Berghe, P & FPZV Ethics Steering Group 2012, Palliative sedation guidelines, Federatie Palliatieve Zorg Vlaanderen, viewed 18 Sep 2015, http://www.pallialine.be/template.asp?f=rl_palliatieve_sedatie.htm.
Hain, RDW 2014, 'Euthanasia: 10 myths', Archives of Disease in Childhood, 99(9), pp. 798-799.
Horne, DC 2014, 'Re: Why the Assisted Dying Bill should become law in England and Wales', BMJ, 349, p. g4349/rr/759847.
Downar, J, Boisvert, M & Smith, D 2014, 'Re: Why the Assisted Dying Bill should become law in England and Wales [response]', BMJ, 349, p. g4349/rr/760260.
Blog by Neil FrancisPosted on Friday 1st February 2019 at 8:55pm
Colorado has just released its second annual assisted dying report
The USA state of Colorado legalised assisted dying via its End Of Life Options [#145] Act in 2016. Its Department of Public Health & Environment has just published its second annual report of statistics of medications dispensed and deaths.
Unfortunately, the Colorado statistics report only all deaths of those prescribed life-ending medications, not those who died using the medication.
In 2017, 70 people who had been prescribed life-ending medication died, representing 0.19% of all deaths.* With Oregon and Washington states clearly showing around 30% of people prescribed lethal medication die without using it, that represents 49 people and 0.13% of all deaths.
In 2018, 104 people who had been prescribed life-ending medications died, representing 0.28% of all deaths. Adjusted to those who would have used their medication, that represents 73 people and 0.20% of all deaths.
The 2017 data is very similar to California's, which also legalised assisted dying in 2016. In 2017, 0.15% of Californians died using its End Of Life Options Act, with 35% of those who had been prescribed the medication having not used it. (California's 2018 annual report has not been released yet.)
The End Of Life Options Acts of both states stipulate that to qualify, a person must be an adult with decision-making capacity and have a terminal illness with death anticipated within six months. Patients may self-administer lethal medication prescribed by their physician: no other person may administer.
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* Total deaths official statistics for Colorado and California not yet available for 2017/2018: total deaths for 2017 and 2018 were calculated using linear extrapolation of USA Centers for Disease Control total deaths data for 1999-2016.
Blog by Neil FrancisPosted on Friday 4th January 2019 at 11:43pm
Victoria has shown what happens at the ballot box to candidates who oppose VAD
Many news outlets are reporting that Victoria's voluntary assisted dying (VAD) Act comes into effect mid-year, and how other Parliaments around the country are likely to implement similar reforms. Moves are afoot in Western Australia, Queensland, NSW and Tasmania, with other jurisdictions to follow. Marshall Perron, former Chief Minister of the Northern Territory and architect of the first VAD law in Australia, has penned a media release to highlight how VAD influenced the Victorian election. The result wasn't pretty for opponents of VAD law reform.
Media release - Marshall Perron
Parliamentarians traditionally shy away from supporting voluntary assisted dying (VAD), believing it is politically toxic to do so. Victoria, under the Andrews government, has changed all that by showing the opposite to be true.
After legislating VAD – Victoria is the first Australian state to do so – Andrews won a thumping victory at the 2018 Victoria State election.
Former NT Chief Minister Marshall Perron said there is a common perception that the political class has not been listening to its constituents. VAD is a classic example.
There were multiple reasons for Victoria’s election result, and VAD was clearly one of them. With unprecedented 80-85% public support, it should be no surprise that Victorian candidates who supported VAD polled more strongly.
In the previous parliament, almost all Liberal members voted against the VAD legislation. The party suffered an average 6.04% swing against it in the State election.
In addition, two of the staunchest Liberal opponents of the VAD bill lost their seats. In the lower house, Robert Clark was tossed out as the Member for Box Hill, a seat he’d comfortably held for a quarter century. In the upper house, Inga Peulich was rejected by voters in South Eastern Metropolitan, a Region she’d represented for three terms.
Dying With Dignity Victoria and Andrew Denton ran targeted campaigns focusing on four electorates – Burwood, Albert Park, Bentleigh and Prahran. They used Robo calls, advertising, social media and face to face meetings to inform voters about where their candidates stood on VAD.
The Liberal candidates (one a sitting member) in these four electorates all opposed VAD. They suffered an average 10.1% drop in primary votes compared with the average drop in the Liberal vote overall of 6.04%.
The Liberal sitting member lost his seat. In the other three seats the sitting Labor and Greens members, who all supported VAD, were returned with significantly increased votes. The results for these four electorates were, compared to the 2014 election:
In Burwood, Liberal member Grahame Watt lost his seat with a 6.47% swing against. Labor candidate and VAD supporter Will Fowles was elected.
In Albert Park, Labor member and VAD supporter Martin Foley was returned with a massive 10.17% increase (two party preferred). The Liberal primary vote dropped 10.24%.
In Bentleigh, Labor member and VAD supporter Nick Staikos was returned with a massive 11.27% increase. The Liberal primary vote dropped 12.59%.
In Prahran, Greens member and VAD supporter Sam Hibbens was returned with a 7.0% increase. The Liberal vote dropped 10.29%.
Mr Perron, who introduced the world’s first successful VAD legislation in the Northern Territory in 1995 said candidates can increasingly expect to lose support when they ignore the wishes of the voters they seek to represent.
In a contest tighter than the Victorian election turned out to be, a handful of seats retained or lost on VAD could determine the outcome.
Blog by Neil FrancisPosted on Tuesday 13th February 2018 at 9:37pm
A DyingForChoice.com editorial appears in the Jan/Feb 2018 edition of LivingNow
A DyingForChoice.com editorial in the Jan/Feb 2018 issue of lifestyle magazine, LivingNow, explains why assisted dying law reform in Australia has taken so long, and why it will accelerate from here.
Blog by Neil FrancisPosted on Thursday 12th October 2017 at 1:50am
The latest religious right 'think tank' lobby group, the Institute for Civil Society.
I challenge the latest religious right commentators opposing Victoria’s Voluntary Assisted Dying Bill to skip the flip-flopping and engage constructively.
They’re at it again. This time it’s the religious right’s latest ‘think tank’ front group, the impressively-named Institute for Civil Society. Sounds grand, doesn’t it?
But if you look into their lot in life, it’s to protect ‘religious freedoms.’ By that, they mean the right to lawfully discriminate against others of whom they disapprove, while at the same time arguing that they not be discriminated against.
Mark Sneddon and Sharon Rodrick of the ‘Institute’ published an opinion piece in Fairfax Media today.
In it, they slam the Victorian Government’s Voluntary Assisted Dying Bill, which was introduced into the Parliament recently.
They level several criticisms at the Bill to say it's not 'safe'. But they could have advanced any criticism of the Bill to claim, as they do, that “the vulnerable will be at risk” — a logical fallacy as I’ve pointed out before. The "vulnerable will be at risk", by circular definition, if the Bill is printed in black ink (as it is) instead of purple, but they didn't complain about the colour of the ink.
The flip-flop
The point is, they flip-flop because they’re remarkably inconsistent in their position. At the same time as pointing out supposed flaws in the Voluntary Assisted Dying Bill, demanding a much higher standard of proof about a number of things, they completely fail in their opinion piece to even mention — let alone demand the same level of safeguards for — an already-legal and equivalent hypothetical risk for the “vulnerable.”
Equivalent hypothetical risk in operation for nearly 30 years
In Victoria, patients have an inalienable right to refuse any and all medical treatment. No reason need be given, even if the treatment is life-saving. The Medical Treatment Act 1998, currently in force, has several safeguards to protect against coercion or undue influence. In Section 5(1), one doctor and “another person” (who can be anybody) must be satisfied that:
“the patient has clearly expressed or indicated a decision”; and
“the patient’s decision is made voluntarily and without inducement or compulsion”; and
“the patient has been informed” about their condition and “has appeared to understand that information”; and
“the patient is of sound mind and has attained the age of 18 years.”
They’re all the legislated safeguards for the refusal of life-saving medical treatment.
And how many cases of undue influence have been prosecuted in Victoria over the nearly 30 years the Medical Treatment Act 1998 has been in effect? Precisely none. Not one.
So much for Messrs Sneddon and Rodrick’s avaricious relatives lurking at every bedside.
A new, equivalent hypothetical risk
The Medical Treatment Planning and Decisions Act 2016, which will come into force in March next year and which extinguishes the Medical Treatment Act 1998 at that time, also contains several similar safeguards for the refusal of life-saving medical treatment.
In witnessing an Advance Care Directive (Section 17), the two signatories, only one of whom must be a medical doctor, must certify that:
the person “appeared to have decision-making capacity” in relation to the documented decisions; and
the person “appeared to understand the nature and effect of each statement”; and
“the person appeared to freely and voluntarily sign the document”; and
“the person signed the document in the presence of the two witnesses”; and
“the witness is not an appointed medical treatment decision maker for the person.”*
In Section 52 of the Act, a health practitioner is forbidden to administer medical treatment if they are aware the patient has refused it, however (lawfully) refused.
This Act was passed in the term of the current Parliament: that is, by the same State MPs who are now considering the Voluntary Assisted Dying Bill.
There was no great fracas over the sensible safeguards spelled out in the new Medical Treatment Planning and Decisions Act. There was no onslaught of “crisis!” op-ed screeds published in newspapers. There were no countless hours of talking heads tut-tutting and painting doomsday scenarios.
It was passed by the Parliament and accepted by the people as striking the right balance.
No safeguards at all in many cases
And that’s it: the sum-total of safeguards to refuse life-saving medical treatment in Victoria. However, if the patient refuses medical treatment verbally, there are no mandated safeguards at all in either old or new Act, because the statutory safeguards apply only to refusal given in writing.
Yet despite all this, Messrs Sneddon and Rodrick rail against safeguards against coercion and elder abuse only in regard to the Voluntary Assisted Dying Bill, in which the safeguards are of a significantly higher calibre, with, for example, mandatory multiple doctor opinions, documentation trail, multiple requests, no go-ahead until approval by an external authority, notifications of numerous kinds, oversight by a specially-established panel, and so on.
It’s obvious what a flip-flop Messrs Sneddon and Rodrick’s demands are in respect of decisions that will foreseably result in death.
Another embarrassing flip-flop
Messrs Sneddon and Rodrick particularly also complain at length at the supposedly ‘lax’ definition of decision-making capacity in the Voluntary Assisted Dying Bill.
That’s a major and embarrassing flip-flop. Here’s why.
The section of the Voluntary Assisted Dying Bill that stipulates those requirements (Section 4) is the same section number 4 that governs the right to refuse of life-saving medical treatment in the Medical Treatment Planning and Decisions Act 2016. Only a few words have been changed to alter the context from refusal of treatment to consideration of assisted dying. Otherwise, the Sections are identical.
Messrs Sneddon and Rodrick don't point this out in their opinion piece. Indeed, I was unable to find online any evidence that they had published any complaint about the provisions when the Medical TreatmentPlanning and Decisions Act was in debate, nor since. If they have, I’d be happy for them to point it out.
Is it all a strategic ruse, anyhow?
It’s pertinent to ask if the objections are a ruse anyhow, because, as Andrew Denton has rightly pointed out, a key opponent strategy is not to give an outright “no” to assisted dying Bills, but to say only “not this Bill” and create an atmosphere of FUD (fear, uncertainty and doubt) so that it is defeated.
A typical ruse example
By way of example, I’ve published an account of how Victorian MP Daniel Mulino published outrageous misinformation about assisted dying. As a result, we had an extended conversation, during which he acknowledged that he had indeed published misinformation. At the end of the conversation I asked if he could support the Government’s Voluntary Assisted Dying Bill. (He’s a member of said Government.)
No, it’s too liberal, he said, pointing to Oregon’s Death With Dignity Act, now in force for nearly 20 years, as a more conservative approach. So I asked him if he would support a Bill like Oregon’s.
No, he said, there were still concerns about it.
By now you’ve spotted the merely incremental withdrawal of supposed possible support. So I asked him outright if there was any form of assisted dying Bill he could support.
The relevant word within a long discourse: No.
And there’s the answer that belies the political strategy. It doesn’t matter one whit what provisions are included in an assisted dying Bill, just criticize a bunch of provisions and create FUD to defeat it.
A direct challenge to Messrs Sneddon and Rodrick
If “doubters of this Bill” are genuine about permitting assisted dying in some defined circumstances, the duty is on them to define those circumstances and recommend wording to enact it.
And that’s the challenge I throw down directly to Messrs Sneddon and Rodrick. Don’t just bitch and gripe: define precisely what provisions and wording you think would be acceptable.
If you fail to stipulate what you deem acceptable, then your opposition to “this flawed Bill” is, like the supposedly ‘soft’ opposition of other campaigners in the negative, merely a ruse.
And that’s rather suggested by your deliberate use of the term “killing” for what most Australians believe to be an understandable and welcome release. But let’s give you the benefit of the doubt… for now.
Will you rise to the constructive challenge, or lurk in the shadows merely making snide remarks and flip-flopping?
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* Section 62 of the Act also requires a doctor to notify the Public Advocate if “significant treatment” is refused — but only if it is refused by a substitute decision maker on behalf of the patient: not by the patient herself. And “significant treatment” is defined as treatments (not non-treatments) which are likely to have a serious impact on the patient (bodily intrusion, risk to life, side effects or distress). “Significant treatment” in the Act does not mean treatment whose refusal may result in death.
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.
“#Catholic church @Pontifex believes all life is sacred&supports #PalliativeCare and use of strong #pain medicines” — Dr Katherine Pettus
Her just-published IAHPC ‘Concept Note’ railing against assisted dying,1 and summarised on the European Association of Palliative Care’s (EAPC) website,2confirms and amplifies precisely the point I made.
Now you’d think that an organisation with a name like ‘International Association for Hospice and Palliative Care’ would be a neutral organisation representing the world profession irrespective of the faith or personal spiritual beliefs of its members.
But you’d be quite wrong.
Nothing but Catholic doctrine
The IAHPC's musings extensively cite several Popes as the authorities on the subject of — and exclusively against — assisted dying. They expressly use the term "Table of authorities," which includes Popes. And who else?
Precisely nobody: no other faith, and no impartial scientific research, is cited. Just Popes.
She also writes:
“IAHPC wishes to encourage our partners to express clear support for faith based teachings on palliative care.”
“It is important to clarify this misinformation [about ‘stealth euthanasia’] with the authoritative teachings of the Church.”
“Hospice has always been faith based.” [As if ‘the way it’s always been’ is a sound argument for ‘the way it always should be.’ Perhaps we shouldn’t have moved from serfdom to democracy?]
“The Catholic Church began the medieval hospice movement, and can lead the modern palliative care movement.” [They curiously neglect to mention that the palliative care (not hospice) movement rose from Anglican roots in the UK, helpfully confirming that this broadcast is primarily about promoting Catholic religion, not palliative care.]
Shameless self-promotion
But Dr Pettus and the IAHPC’s Concept Note don’t stop there.
“The Word [sic] Day of the Sick (WDS) is a good opportunity to support faith based healthcare organizations.”
“Contact your parish to see if you can hold a small event…”
“Contact your local Catholic health care provider director to find out about…”
“Make an announcement at your local church…”
Gosh, I must have been mistaken. I thought World Day of the Sick was about… the sick!?
But Dr Pettus and the IAHPC commandeer it to shamelessly further the Catholic religious agenda amongst palliative care service providers.
An unexamined conflict of interest
It's deeply disturbing that someone holding the position of “Advocacy and Human Rights Officer” considers the beliefs and values only of the service provider (who she represents) in promoting the world day about sick people (who her organisation serves).
Palliative care organisations repeatedly state that they aim to deliver patient-centred care. But the world palliative care peak body's self-adoration exposes the worst of them: taking the opportunity of a day supposedly for the values and needs of sick patients, and using it to glorify their own particular (Catholic) religious tenets which are to be lauded over those of the patients they serve.
Most of the world is not Catholic, and in Australia at least, most Catholics disagree with Vatican doctrine on assisted dying.
How astonishing then to dictate that Catholic doctrine must prevail over everyone, including Protestants, Hindus, Buddhists, Jews, Muslims, agnostics, atheists and others. Dr Pettus and the IAHPC comprehensively fail to demonstrate any awareness or reflection of potential conflicts of interest in serving people of different faiths and beliefs.
Incomprehensible arrogance
There is little issue with the Catholic Church directing its own willing adherents as to how they might end their days.
But for one religious institution to seek to impose its views on everyone worldwide is incomprehensibly arrogant. I guess it's no surprise then that a Catholic Bishop recently admitted — at a Royal Commission inquiry into the extensive, ongoing and horrific abuse of children under the Church's pastoral care — that the Catholic Church is a "law unto itself".
It would be helpful if the Holy See reflected on the principle: is it legitimate for another faith to force its own views on the Vatican or on Catholic patients?
It would also be helpful if the International Association of Hopsice and Palliative Care reflected on respecting and serving the wider community rather than behaving like a subsidiary of the Holy See.
Conclusion
The IAHPC has provided its own unequivocal proof that it is religious conservatism behind organised opposition to assisted dying, with the Catholic Church at the front of the pack.
You’ll understand why I tweeted in response to Dr Pettus:
“.@kpettus @EAPCOnlus Thanks for confirming @Pontifex arrogance. Not once did you mention PATIENT’S PoV. All about YOU.” — Neil Francis
- - -
And furthermore
Parading ignorance
The IAHPC refers repeatedly to the treatment of ‘pain’ in its stand against assisted dying law reform. But pain is not amongst the leading reasons for assisted dying (it is a much less common reason). Key reasons are the inability to participate in any of life’s enjoyable activities, loss of independence and loss of dignity.
I guess the curious focus on ‘pain’ is understandable though, because the Vatican is very fond of the doctrine of double effect (DDE) — which the IAHPC specifically notes in Catholic Catechism 2279 although not by its DDE name, but rather bizarrely as “a special form of disinterested charity.”
The DDE posits that it’s OK for a doctor to administer high doses of analgesics to treat pain, even if an unintended consequence is to hasten the patient’s death. The Catholic Church treats this doctrine as uncontroversial, even though it remains controversial amongst other ethicists and philosophers: the principle says “it’s quite OK for a doctor to kill her patient, as long as she doesn’t really mean to.”
I would commend Dr Pettus and the IAHPC to do some proper research and understand the subject area more competently before pontificating (yes, intended meaning) further.
The smokescreen argument
The IAHPC also states that:
“No country or state should consider the legalization of euthanasia or PAS until it ensures universal access to palliative care services.”
That’s purely a smokescreen argument for two reasons. Firstly, the Concept Note also argues that assisted dying:
“both violate[s] the bond of trust within the profession of medicine, and undermine[s] the integrity of the profession and the dedication to safeguard human life.”
Setting aside the empirical falsehood of the statement, it furnishes the IAHPC a 'get-out-of-jail-free' card if and when palliative care becomes ‘universally’ available: it’s utterly irrelevant if that goal is reached because there’s a more fundamental objection behind it.
Secondly, it's an established fact that palliative care can’t always help, even when the best services are available. ‘Universal’ access won’t fix all the problems.
All these faux arguments are typical and common from religious opponents of assisted dying.
Blog by Neil FrancisPosted on Thursday 9th February 2017 at 9:53pm
You only have to look to understand who is campaigning against your right to choose an assisted death in the face of intolerable and unrelievable suffering.
A case in point is a massive advertisement published in both of Melbourne’s daily newspapers: News Corp’s The Herald Sun (right-wing) and Fairfax Media’s The Age (left-wing). The ad was published in 2008 when Victorian MLC Colleen Hartland introduced the Medical Treatment (Physician Assisted Dying) Bill into the State legislature.
The Catholic Archbishop of Melbourne, Denis Hart, also sent the advertisement as a letter to all members of the Victorian Parliament.1
So, who are the advertisement’s signatories? I’ve listed them all in Table 1.
Table 1: Signatories to the 2008 Victorian anti-assisted-dying advertisement
Rt Rev. Graham Bradbeer
Moderator, Presbyterian Church of Victoria
The Rev. Fr Graeme A. Michell, FSSM
Parish Priest, Anglican Catholic Parish of St Mary the Virgin, Melbourne
Rev. Ross Carter
Uniting Church in Australia
Pastor Graham Nelson
Senior Pastor, Life Ministry Centre
Rev. Dr Max Champion
National Chair of the Assembly of Confessing Congregations within the Uniting Church in Australia
Rev. David Palmer
Convenor Church and Nation Committee, Presbyterian Church of Victoria
Pastor Mark Conner
Senior Minister of CityLife Church
Rev. Greg Pietsch
President, Victorian District, Lutheran Church of Australia
Dr Denise Cooper-Clarke
Adjunct Lecturer, Ridley Melbourne Mission and Ministry College
Rabbi Dr Shimon Cowen
Director Institute for Judaism and Civilization
Very Rev. Dr Michael Protopopov
Dean - Russian Orthodox Church in Australia
Rev. Megan Curlis-Gibson
St Hilary’s Anglican Church, Kew
Marcia Riordan
Respect Life Office, Catholic Archdiocese of Melbourne
Archbishop Dr Philip Freier
Anglican Church of Melbourne
Metropolitan Archbishop Paul Saliba
Primate of Antiochian Orthodox Archdiocese of Australia, New Zealand & the Philippines
Imam Riad Galil
West Heidelburg Mosque
Member of the Victorian Board of Imams
Bishop Peter Stasiuk CSSR DD
Eparchy of Saints Peter and Paul of Melbourne, for Ukrainian Catholics in Australia and New Zealand
Rev. Father James Grant SSC
Chaplains Without Borders,
Melbourne Anglican Diocese
Dale Stephenson
Senior Pastor Crossway Baptist Church
Assoc. Professor Afif Hadj MB BS (Melb) FRACS
Director of Surgery, Director of Medical Training, Maroondah Hospital (A Monash University Teaching Hospital)
Pastor Peter Stevens
Victorian State Officer
Festival of Light Australia
Archbishop Denis Hart
Catholic Archdiocese of Melbourne
Dr Nicholas Tonti-Filippini
Associate Dean, JPII Institute for Marriage and Family Melbourne
Rev. Fr Geoff Harvey
Priest of the Good Shepherd Antiochian Orthodox Mission Parish, based at Monash University
Rob Ward
Victorian State Director Australian Christian Lobby
Assoc. Professor Rosalie Hudson
Aged Care & Palliative Care consultant/educator
Jim Zubic
President of Orthodox Chaplaincy Association
Peter McHugh
Senior Pastor Christian City Church, Whitehorse
Persons in blue: Career is religion
Almost all of them are religious by career
To save you a lot of time assessing who these people are, I’ve coloured in blue all the folks whose job it is to espouse religion — at least, their own hierarchy’s view of it.
That’s 27 of the 29 signatories who by career are intensely immersed in their own religious perspective of the world; established and promoted through institutional doctrine.
But what about the other two?
What about the other two signatories, Assoc. Prof. Afif Hadi and Assoc. Prof. Rosalie Hudson (in yellow)?
Notice that Prof. Afif Hadi’s entry lists only his surgery profession. Highly relevant, but not mentioned, is that he was President (previously Vice Chairman) of the Australian and New Zealand Board of Trustees, Antiochian Orthodox Archdiocese of Australia and New Zealand. As head of the Board of the Archdiocese, his religious signature is intimately entwined with another: Metropolitan Archbishop Paul Saliba, the Primate of the Antiochian Orthodox Archdiocese.
Assoc. Prof. Rosalie Hudson’s listing too, mentions only seemingly secular links. What is omitted is that she is or was Chair of the University of Divinity (a multi-faith religious institution) Human Research Ethics Committee, Secretary of the Uniting Church’s committee on bioethics, a member of the Interfaith Committee, and an Academic Associate at Charles Sturt University’s School of Theology.
Thus, both Prof. Hadi and Assoc. Prof. Hudson are also deeply rooted in religious faith. The point is not to make any criticism of their faith or practice, but merely to observe the deeply religious connections to opposing assisted dying law reform. It’s worth mentioning that both Hadi and Hudson do valuable charity work.
So, all of them are deeply religious
A pertinent question to ask is: ‘What proportion of the signatories are neutral, scholarly researchers who have studied the empirical evidence from jurisdictions where assisted dying is already lawful?’ Answer: None of them. Enough said.
And what proportion of the signatories to this anti-assisted dying advertisement are very deeply invested in organised religion? The simple answer is as usual: 100%,all of them.
Disconnected from their flocks
Critically, these career-religious fail to reflect the views of their own flocks. We know from repeated polls, for example, that three out of four Australian Catholics, more than three out of four Uniting Church members, and four out of five Anglicans (Church of England) support assisted dying law reform.
This kind of clerical disconnect from the contemporary will of the people is one of the key reasons Australians are deserting religion in droves, as successive censuses show.
Conclusion
The evidence is irrefutable. Those who are actively organised to oppose your right to choose an assisted death are deeply religious, even when they use seemingly secular arguments (more on those later).
They are entitled to their opinions for themselves. But what right do they have to deny the vast majority of Australians, who do not agree with their views, the right to choose?
To phrase it in the personal, why does the Catholic Archbishop of Melbourrne, Denis Hart, think it appropriate to demand that Mr Geoff Drummond, a Buddhist, should have suffered against his will at the end of life for the Archbishop's version of faith, rather than Mr Drummond's own spiritual beliefs? Why does Rabbi Shimon Cowen think it appropriate to demand that Mr Alan Rosendorff, a fellow Jew, should have suffered against his will at the end of life for the Rabbi's version of faith, rather than Mr Rosendorff's own carefully-considered and deeply-held views? And why does Imam Riad Galil think it appropriate to demand that Mr Peter Short, not a Muslim, should have suffered against his will at the end of life for the Imam's beliefs, rather than his own?
Perhaps hubris remains alive and well amongst religious conservatives?
-----
Declaration: In fairness to those mentioned in this article, I openly declare that I am agnostic.
References
Bradbeer, G, Rt Rev., Carter, R, Rev., Champion, M, Rev. Dr, Conner, M, Pastor, Cooper-Clarke, D, Dr, Cowen, S, Rabbi Dr, Curlis-Gibson, M, Rev., Freier, P, Archbishop Dr, Galil, R, Imam, Grant SSC, J, Rev. Fr, Hadj, A, Assoc. Prof., Hart, D, Archbishop, Harvey, G, Rev. Fr, Hudson, R, Assoc. Prof., McHugh, P, Michell, GA, Rev. Fr, Nelson, G, Pastor, Palmer, D, Rev., Pietsch, G, Rev., Pietsch, M, Protopopov, M, Very Rev. Dr, Riordan, M, Saliba, P, Metropolitan Archbishop, Stasiuk, P, Bishop, Stephenson, D, Stevens, P, Pastor, Tonti-Filippini, N, Dr, Ward, R & Zubic, J 2008, Reject physician assisted dying - An open letter to Victorian MPs, Catholic Archdiocese of Melbourne, viewed 13 Jun 2008, http://www.cam.org.au/Euthanasia.aspx.
The F filesPosted on Wednesday 5th October 2016 at 10:21pm
Palliative Care Australia's position statement on assisted dying.
I’ve written previously about palliative care specialists trying to filibuster assisted dying law reform. In this F file, I reveal how Australia’s peak body for palliative care (PC), Palliative Care Australia (PCA), segues from a state of ignorance to its own filibuster that would stall assisted dying choice.
First up, let me say that I hold deep admiration for the generally excellent services PC specialists provide at the bedside. I believe that PC deserves strong support and good funding. The peak body’s leadership in regard to its stance on assisted dying, however, is of a dramatically lower calibre.
Revised policy statement
In PCA’s latest incarnation of its Position Statement on ‘Euthanasia and physician assisted suicide’,1 the organisation says that:
“Public discussion and policy development on issues related to euthanasia and physician assisted suicide should be informed by research. There is insufficient research into euthanasia and physician assisted suicide.” — Palliative Care Australia, Position Statement
One can only agree wholeheartedly with the first sentence. Of course public discussion and policy development should be informed by research wherever possible.
The filibuster
And there follows the filibuster rub — PCA unequivocally claims that there is insufficient research. The logical consequence of PCA's juxtaposition is that we ought to muzzle public discussion and policy development because, PCA alleges, there is insufficient research to inform it.
Certainly in terms of Australia there are only a handful of published studies into attitudes and practices. But assisted dying is illegal in Australia. There are very substantial ethical and legal issues when it comes to conducting research.
Who is PCA to claim "insufficient research"?
PCA is the peak body for PC, a specific discipline within medicine that represents (well-paid) doctors. It runs a staffed office in Fyshwick ACT, and is overseen by a Board and Executive. It has a key purpose of lobbying in the halls of power in the Federal Parliament, and, presumably on the basis of the statement above, has a goal of ensuring that government PC policy (and funding) is informed by research. You'd think it might have some resources and connections to go looking for some research evidence.
A revealing comparison
In comparison, I conduct my assisted dying law reform work on a completely pro-bono basis, as a single individual, in my spare time. I have a formal literature collection on end-of-life decision making, including assisted dying, of currently over six thousand articles. I’m not talking about mere opinion published in the media: I’m talking about articles published in professional journals and in official government and agency reports.
I just ran a quick check across my database, looking for items specifically in respect of assisted dying (not medical or palliative care in general) in the Netherlands, Belgium and Oregon, where assisted dying has been legal for some time. Here’s what I found.
In respect of assisted dying the Netherlands I hold 366 journal articles and 25 official reports. For Belgium, I hold 152 journal articles and 11 official reports. And for Oregon I hold 144 journal articles and 32 official reports.
That’s a total of 662 journal articles and 68 official reports in respect of three lawful assisted dying jurisdictions. And that doesn’t count any holdings of book chapters, conference papers and the like. The journal article count will be somewhat overstated because a minority of journal papers are about more than one lawful jurisdiction (e.g. the Netherlands and Belgium). So let’s estimate that downwards to, say, a mere 400 journal articles.
That’s an abundance of evidence from and review about jurisdictions where assisted dying is legal. Could we always know more about assisted dying? Sure.
Double standards when it comes to evidence
We could also know a lot more about PC. I recently asked PCA for a simple but critical headline statistic — one you’d think was necessary to inform policy about PC resources and funding: “what proportion of Australians who experience a non-sudden death (i.e. deaths where PC might be relevant) actually receive PC?”
PCA kindly responded, but the answer in a nutshell was “we don’t know.”
But I wouldn't suggest for a moment that we muzzle “public discussion and policy development on issues related to PC” because the peak body hasn't done enough research to calculate (or even estimate) a fundamental policy-informing statistic.
Conclusion
The Australian community would be better served if PCA acquainted itself with the extensive available literature on assisted dying in lawful jurisdictions (as well as headline PC statistics), and dropped its inappropriate filibuster.
References
Palliative Care Australia 2016, Euthanasia and physician assisted suicide: Position statement, viewed 1 Sep 2016, <http://palliativecare.org.au/download/2448/>.
The F filesPosted on Monday 3rd October 2016 at 1:38am
Dr Megan Best and the AMA profoundly misrepresent what this research says.
In my report about Dr Megan Best misreporting research findings about assisted dying practice in Belgium, I said that I would ask the Australian Medical Association (AMA) to publish a correction statement. I did just that, posting a courteous notice explaining the misinformation and requesting the correction, as a comment to their online article. What happened next was supremely revealing about how the conservative medical establishment opposes your right to choose assisted dying. I expose six reprehensible aspects of Dr Megan Best’s ‘expert’ opinion and MJA InSight’s response to my report.
How did the AMA respond? Well, first of all, they simply deleted my post from the Medical Journal of Australia article (in MJA InSight).1
Subsequently, AMA member Dr Rosemary Jones posted my advice and request for correction. They dared not delete the post of a member, because Dr Jones’ post remains and MJA InSight have now responded… in a fashion.
Response 2—Plead it’s not the AMA
First up, Cate Swannell, editor of MJA InSight as well as “MJA news and online,” wrote that MJA InSight is:
“…editorially independent from the AMA and the AMA does not influence our content and editorial decisions in any way, shape or form … Thanks.” — Cate Swannell
It would be fair to take Ms Swannell’s word for it that the AMA doesn’t make a habit of sticking its nose into individual items at the Medical Journal of Australia (MJA). But consider this: MJA, of which MJA InSight is a part, is published by a wholly owned subsidiary of the AMA. That is, even in the absence of direct influence, one might reasonably expect that the AMA has broader, long-term influence over “content and editorial decisions.” After all, a core purpose of establishing a wholly-owned subsidiary is to help promote owner’s interests (which at present are officially and trenchantly opposed to the legalisation of assisted dying).
Those interests are further intertwined at DoctorPortal which is co-owned and operated by the AMA and its entity that publishes MJA. The portal includes the ‘MJA Bookshop’ where doctors must log in using their AMA credentials to obtain discounts.
MJA InSight is in real and practical terms a publication of the AMA.
Refresher: The original allegations
Before we cover the further AMA responses, let’s remind ourselves of the ‘expert opinion’ the AMA obtained from Dr Megan Best about Belgian assisted dying practice as published in MJA InSight:
“I am concerned by the reduction in referral to palliative care doctors and specialists in the euthanasia approval process, as GPs are less likely to know whether or not the suffering can be alleviated – the keystone of the act,” she said.
“This is a weakening of the due process of the act and suggests that the ‘safeguards’ are seen more as a barrier to be overcome than an opportunity to improve life to the extent that euthanasia is no longer necessary.” — Dr Megan Best
Response 3—Confirm the ‘cherry-picking’ misrepresentation
Here’s how Sarah Colyer, author of the article in which Dr Best’s nonsense was quoted, responded to Dr Rosemary Jones’ objections:
“…there are two findings related to the involvement of palliative care doctors in the study. First, the study found palliative care physicians were less likely to be the legally-required ‘second doctor’ to sign off on the decision for euthanasia, as more GPs took on the role.” — Sarah Colyer
What a profound fudge. The paper does not say that. There is a notional mathematical decrease in palliative care (PC) ‘sign-offs,’ but with a p value of 0.3 it is not in the slightest bit statistically significant. In other words, it is not possible to validly assert that it became “less likely.” And this is the reason that the researchers correctly didn’t draw such an inference in their discussion and conclusions.
This is extraordinary. In its defence, this AMA publication confirms and defends that Dr Best had cherry-picked a supposed trend with no statistical significance and which seems to (but doesn’t) support opposition to assisted dying law reform, while utterly failing to mention a highly significant trend (p = 0.001) in the opposite direction, present in the very same table of data (Table 3 of the cited research paper).2
While the original MJA article reported on both data series, it failed to identify that one was in no way statistically significant while the other was highly so.
Response 4—Execute an impressive flip-flop
“Second, and as Sarah Edelman is quoted saying, 39% of patients had contact with palliative care teams in the lead up to euthanasia (but these doctors were not necessarily involved in sign-off).” — Sarah Colyer
Both Dr Megan Best, and Sarah Collyer in defence, express concern about what they see as the insufficient ‘signing off’ or approval of assisted dying by Belgian PC specialists. Yet Palliative Care Australia explicitly states that:
“The practice of palliative care does not include euthanasia or physician assisted suicide. Palliative care does not intend to hasten or postpone death.” — Palliative Care Australia3
So on the one hand Australia's national PC body demands that PC have nothing whatever to do with assisted dying, while an Australian PC specialist (who is opposed to assisted dying) demands that it must: not just ‘incidental’ involvement to ensure the patient is well-informed as to what PC may offer, but to directly insert itself in the assisted dying approval process.
What an impressive ‘must not, yet must’ flip-flop.
Response 5—Confirm bias about consultations
Sarah Colyer goes on to say:
“Although this latter figure is an increase from 33%, the article makes clear that this is more about palliative care doctors being ‘notified’ than necessarily having any professional input into the decision-making process.” — Sarah Collyer
If my point 3 above exposed a ‘profound’ fudge, this is a spectacular one. Indeed it’s utter fiction. Nowhere in the cited research report do the data or authors suggest in any way that PC teams were merely ‘notified.’ They were consulted. The word is used explicitly in no fewer than seventeen times specifically in relation to PC. What is a professional ‘consultation’?: “a meeting or discussion to obtain advice.”
To suggest that these are mere ‘notifications’ is absurd: why would a physician even bother to formally ‘notify’ other relevant carers if he or she had no intention of the notification having any meaningful consequence?
The only outcome of this ‘notification’ fiction is to make Belgian physicians seem careless or disinterested—a shabby and biased approach to describing overseas colleagues who engage in lawful conduct of which the commentators (at least, Dr Best) personally disapprove.
Response 6—Demonstrate fundamental ignorance about research
Remember that Dr Best complained about her perception of a low assisted dying PC consult rate as obstructing the “opportunity to improve life to the extent that euthanasia is no longer necessary”. Sarah Colyer defends and amplifies the ‘low consult rate’ message of the Belgian research:
“Although Dr Edelman and the study authors said this [increase in palliative care consults] was a positive development, Dr Best and another respected palliative care doctor who provided background for the article said it was still overall a very low rate of palliative care involvement.” — Sarah Colyer
These remarks reveal a deep ignorance about research evidence. The reported data the 'experts' criticised was only in respect of PC involvement after a request for assisted dying. It did not include any PC consults that occurred in the patient’s care trajectory prior to the assisted dying request. (Indeed, the assisted dying request may in some cases have developed as a consequence of palliative futility.) The research authors are even explicit about this:
“The reporting form does not record whether patients have previously received palliative care.” — Dierickx, Deliens, Cohen et al2
Contrary to Best and Colyer’s indefensible assumption, empirical research evidence indicates that around 74% of assisted dying cases in 2013 at least in Flanders, the Dutch-speaking larger half of Belgium, involved specialist PC services.4 The Dierckx et al2 data is also in respect only of PC-primary-specialist consults. Many Belgian physicians, especially but not only many oncologists, themselves hold PC sub-specialty endorsements, yet only their primary organ or disease specialty is recorded on the report forms.
The 74% PC consult figure of course by definition excludes those who made a request but who subsequently rescinded it (i.e. not captured in the data because there was no assisted death). The patient may have rescinded their request as a consequence of PC consultation. Other published scientific research indicates that in 2013 around 18% of Belgian assisted dying requesters revoked their request.5
Indeed, more than half (59%) of Belgian patients making a request in 2013 died before the consulting team had reached a decision, and 7.5% of requests were denied by physicians because the patient wasn’t terminally ill even though that is not a requirement of the law.5 The wider evidence suggests that Belgian doctors remain conservative and cautious rather than pursuing poor practice as Dr Best and Ms Colyer invalidly attempt to conclude.
What is “very low”?
Just for good measure, let’s compare a Belgian assisted dying 74% PC consult rate with the general PC rate in Australia (where assisted dying is illegal). There’s precious little data around and Palliative Care Australia didn’t respond to two requests. [Addendum 5th Oct: Palliative Care Australia responded but advised that to the best of their knowledge the specific statistics were not available.] The closest relevant official data I could find with hours of intensive research, reports that in 2011-12, 39.5% of hospital inpatients who died received PC consults.6 Of course, PC consults can only be relevant in respect of non-sudden deaths because there’s no opportunity to make such decisions in a relatively sudden death. About two thirds of all deaths are not ‘sudden,’ so let’s adjust up the original figure to reflect that, resulting in a hospital non-sudden-death PC consult rate of around 60%.
Half (50%) of all deaths in Australia occur in hospitals, 38% in residential and community (i.e. other institutionalised) care, and just 12% elsewhere (mostly at home).6 Let’s say for the sake of argument (and lack of data) that the PC consult rate for other institutions is similar to hospitals. Let’s also assume that of (two thirds non-sudden) deaths at home, all of them received palliative care consults. That raises the Australian PC consult rate to around 68% of all non-sudden deaths. Maybe the real figure is somewhat higher or lower.
But it is wholly incorrect to conclude, given Belgium’s Flemish PC consult rate for assisted dying at 74%, that the Belgian palliative care consult rate is “very low” as the two ‘expert’ PC commentators wrongly assert and Sarah Colyer reports on the basis of data about a different measure.
Conclusion
The AMA widely promotes evidence-based decision making, but it has comprehensively offended its standard in regard to this issue. The AMA’s response to this further critique will give the Australian public a strong indication as to its intent, ethics and credibility. Of course, I'll let you know how they respond.
As for Dr Megan Best offering such ill-considered and evidence-defying nonsense as ‘expert opinion,’ I would hope that she permanently retires from offering commentary.
Now at least you can see the kinds of rubbish arguments that the conservative medical establishment uses to justify opposing your right to consider an assisted death.
Inexpert opinion via the AMA’s MJA
Through its MJA InSight article and response, the AMA has published and defended misinformation against assisted dying, a choice that the overwhelming majority of Australians want on the table, but which the AMA explicitly opposes.
First up, the AMA tried to bury my critique of its incoherent and incorrect ‘expert opinion’ by deleting the critique.
Then it tried to argue that its published misinformation was nothing to do with the AMA.
It confirmed that it had reported a cherry-picked non-significant ‘trend’ from a research paper’s data that was, coincidentally, consistent with AMA opposition to assisted dying, while omitting to mention a highly statistically significant trend—in the same table of data—that contradicted the AMA and commentators’ stance.
Its article and critique response argued that PC must be involved in approving assisted dying requests at the same time that Palliative Care Australia insists that assisted dying is nothing to do with PC.
It fictionally asserted that the Belgian research paper suggested PC specialists were merely ‘notified,’ while the research paper said no such thing and referred repeatedly to ‘consultation.’
It ignorantly claimed that the Belgian PC consult rate was “very low” (when it isn’t) on the basis of what happened only after an assisted dying request, ignoring that PC consults can and do occur before an assisted dying request.
Dierickx, S, Deliens, L, Cohen, J & Chambaere, K 2016, 'Euthanasia in Belgium: Trends in reported cases between 2003 and 2013', CMAJ, September 12, 2016.
Chambaere, K, Vander Stichele, R, Mortier, F, Cohen, J & Deliens, L 2015, 'Recent trends in euthanasia and other end-of-life practices in Belgium', N Engl J Med, 372(12), pp. 1179-1181.
Dierickx, S, Deliens, L, Cohen, J & Chambaere, K 2015, 'Comparison of the expression and granting of requests for euthanasia in Belgium in 2007 vs 2013', JAMA Internal Medicine, 175(10), pp. 1703-1706.
Swerissen, H & Duckett, S 2014, Dying well, Grattan Institute, Carlton, Victoria, pp. 37.