Fact file by Neil FrancisPosted on Sunday 13th November 2016 at 1:47am
Assisted dying rates in Dutch-speaking cultures (orange bars) are much higher than elsewhere.
In this whitepaper, Benelux (Belgium, Netherlands and Luxembourg) primary empirical data on assisted dying is analysed — including with new and advanced approaches — to provide fresh insights into contemporary practices. Investigation reveals that the assisted dying rate in Dutch-speaking cultures appears to be uniquely higher than in other cultures irrespective of the permissiveness of the legislative framework, yet is still practiced conservatively.
Download a full copy of the Whitepaper here: PDF (648Kb).
Summary
This new compilation and unique analysis of primary research data from statutory authorities and the peer-reviewed literature provides fresh insights into assisted dying practice in Benelux, including:
Rates of assisted dying in the Netherlands and Belgium have followed an expected sigmoid curve, now beginning to level out.
Several factors have contributed to the higher increase in the Netherlands rate, including recovery from a suppression of cases immediately following statutory reform, a rise in cancer diagnoses, and an increase in granting of assisted dying through new visiting teams launched in 2012.
Both Netherlands and Belgium doctors demonstrate caution if not conservatism when assessing assisted dying requests.
Despite most assisted dying occurring in cases of cancer, fewer than one in ten cancer deaths in the Netherlands and one in twenty in Belgium is an assisted death.
Other conditions such as degenerative neurological, pulmonary and circulatory illnesses each account for a very small proportion of the increase in cases since legalisation in Benelux.
The assisted dying rate in dementia and other mental illness is very low despite controversy around—and a tiny rise in granting of—such cases.
The hypothesis that females or the elderly would be ‘vulnerable’ to assisted dying law is contradicted by the data.
The rate of non-voluntary euthanasia has decreased significantly in both the Netherlands and Belgium since assisted dying was permitted by statute.
Assisted dying rates in Dutch-speaking cultures are significantly higher than in non-Dutch cultures, seemingly unrelated to the permissiveness of the jurisdiction’s legal framework.
Benelux country reported assisted dying rates (as a percentage of all deaths)
as at 2014. The three countries have similar assisted dying laws.
The AMA fails to represent the breadth of physicians perspectives around assisted dying.
This informative Go Gentle Australia video explains why the Australian Medical Association is out of touch with the wider Australian doctor community. Around a third of Australian doctors are members of the AMA.
The AMA currently holds a position of hostility towards assisted dying law reform, as it did against abortion before that was formally legalised. The doctors in this video explain how the AMA does not represent their views on assisted dying in restricted circumstances.
In this interview segment, Dutch Professor Theo Boer self-identifies as a voluntary euthanasia sceptic.
I interviewed Dutch Professor Theo Boer—Social Professor of Ethics at Theological University, Kampen, the Netherlands, and a Dutch Euthanasia Committee ethicist—about the Netherlands' assisted dying law.
He volunteers that prior to joining a Euthanasia Committee he was an assisted dying sceptic, and remains so.
And yet he warmly endorses the Dutch leglislative model as a good one for other jurisdictions to emulate, a position that he says has become more clear with experience.
Blog by Neil FrancisPosted on Sunday 8th May 2016 at 9:48pm
Jeanne Smits' completely false statement in LifeSiteNews
Well it didn't take long. Recently I posted a fact-based report card on Dutch euthanasia practice, based on the actual data from the 2015 annual report (and all the earlier reports) of the Dutch Euthanasia Commission. Now, just a few days later, conservative religious opponents have begun publishing completely untrue statements about Dutch euthanasia practice.
Catholic blog LifeSiteNews' 'Paris correspondent' Jeanne Smits has bolted out of the misinformation blocks, assertively and categorically stating in respect of the small increase in number of euthanasia cases from 2014 to 2015, that:
"The rise is mainly due to the increase of euthanasia for demented, elderly people as well as psychiatric patients, two categories that raise even more questions than 'ordinary' euthanasia for untreatable physical pain."
Smits goes on to correctly report that dementia was an underlying factor in 109 of the cases in 2015 (against 81 in 2014) and psychiatric disorders in 56 patients (against 41 in 2014).
The total number of euthanasia cases increased from 5306 in 2014 to 5516 in 2015, an increase of 210 cases. The increase in dementia cases was 28 and in psychiatric disorders was 15. Therefore, underlying dementia accounted for 13% of the increase, and psychiatric disorders 7% of the increase.
Cherry-picking
Smits has cherry-picked just the dementia and psychiatric illness figures and presented them in a way that supports her story arc, painting a bleak picture.
But by no stretch of the imagination does dementia and psychiatric illness account "mainly" for the increase as she categorically states.
What didn't Smits report at all? Cancer: the Netherlands' leading cause of death. In 2015, cancer was the underlying condition in 4000 euthanasia cases, against 3888 in 2014, a rise of 112 cases or 53% of the increase. That compares with dementia at 13% and psychiatric illness at 7% (20% combined), which Smits selectively critiques as a 'sharp rise'.
In no way is Smits' statement true.
No, let's be frank: it's an outright lie. Cancer was the major underlying condition accounting for more than half of the small increase (4%) of cases in 2015.
More evidence refutes the claim
Comparing one years' data with just the preceding years' data can be misleading when the number of observations is low, as it is for dementia and psychiatric illness euthanasia cases. Fortunately, we have data for more than just the one year.
Since 2012 the Euthanasia Commission has consistently published specific figures for dementia and psychiatric illness cases, so we can compare a rise over four years rather than just one. On this basis as a proportion of total 2012 cases, there has been a 17.9% increase in cancer-related cases, a 1.6% increase in dementia cases, and a 1.0% increase in psychiatric illness cases.
Longitudinal data is even more clear than a single year. It unequivocally refutes Smits' silly claim.
Bull is spread
Does Smits' claim matter much? Won't it just slip into oblivion?
No. Michael Haverluck of the conservative Christian paper OneNewsNow has already picked up Smits' article and repeated her claim as gospel. It remains to be seen how many other anti-euthanasia bloggers republish this nonsense.
Unacceptable conduct
In my view, publishing such a categorical yet false statement — even when unintentional — without first properly checking the facts, is unacceptable conduct. The article (and its derivatives) ought to be withdrawn.
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 24th April 2016 at 8:02am
The Sydney Morning Herald opinion piece by Dr Andrew McGee
Dr Andrew McGee, Senior Lecturer in law at Queensland University of Technology, published an opinion piece, "Why Bob Hawke is wrong about euthanasia," opposing assisted dying law reform in the Sydney Morning Herald on the 19th April. He invokes straw-man arguments and conflates different issues.
His ‘they might choose to die too early’ argument overlooks both the current tragedy of the terminally ill suiciding by violent means, as well as that in currently lawful jurisdictions like Oregon and Washington, a third of people who qualify for their medication never take it: it provides strong psychological relief that there is another option available whether they take it or not.
His argument that any boundary in regard to who may qualify would be arbitrary is to overlook the intrinsic boundary-ness of law. A minor (under 18) cannot lawfully buy alcohol. A person may not lawfully participate in ‘sophisticated’ investments unless they earn more than $250k a year. We accept legal boundaries as normal and necessary even if some feel a particular boundary is arbitrary. Necessarily, some will be excluded.
Further, arguing against assisted dying law reform on the principle that it’s ‘complicated’ is to argue against law in any case of alleged complexity. Marriage and divorce are complicated. Should we outlaw those?
Dr McGee’s arguments lack coherence and consistency and comprehensively fail to mount a persuasive case against the legalisation of assisted dying.
The F filesPosted on Tuesday 22nd March 2016 at 12:00am
One of the articles wrongly claiming 650 Dutch babies euthanized
Opponents of assisted dying have fallen prey to misinformation contagion about the Dutch Groningen Protocol, claiming that 650 babies would be or are euthanized every year. The claim is comprehensively and evidentially false.
Starting in 2013 and increasing in shrillness in 2015, numerous opponents of assisted dying law reform—many of whom are connected to conservative (Christian) sources—published online articles making false claims about the Dutch Groningen Protocol, wrongly claiming that up to 650 babies could be, would be or actually are ‘euthanized,’ ‘killed’ or ‘murdered’ every year under the Protocol’s provisions.
A national Dutch Regulation (not statute) effective since late 2006 whose current name is so long that it remains convenient to use its old name, ‘Groningen Protocol,’ even though it has changed.
Permits, only as a last resort and with a number of strict conditions, the intentional ending of a newborn’s life when the newborn is in current (not merely anticipated) untreatable and unrelievable extremis.
Mandatory reporting of intentionally hastened deaths to a national Commission and the Board of Prosecutors General at The Hague.
Physician is not cleared until the case is deemed acceptable by the Commission and the Board and the Minister of Security and Justice.
The Regulation is entirely separate from and unrelated to the Dutch Euthanasia Act for competent adults.
Where did the '650 babies euthanized' claim come from?
In 2013 the Royal Dutch Medical Association (KNMG) published a media release that launched a major policy paper about end-of-life decisions for neonates. The media release stated that of the approximately 175,000 births in the Netherlands each year, around 650 newborns will die as a result of severe congenital defects.
Some of these babies die soon after birth, in the delivery room. Others die later in neonatal intensive care despite the best interventions attempting to keep them alive. Yet others die after futile treatment is withdrawn and palliative (comfort) care is administered to minimize suffering prior to death.
Only in a tiny minority of cases is there a medical intervention with an explicit intention to hasten the death of the newborn, who is in untreatable and unrelievable extremis.
Despite this clarity, opponents—mostly linked to conservative religious sources—jumped on the misinformation bandwagon and trumpeted that 650 babies either could be or would be or are actually ‘euthanized,’ ‘killed’ or ‘murdered’ every year in the Netherlands.
What's the actual evidence?
Neonatal euthanasia occurs around the world regardless of prohibition and is not caused by a protocol or regulation
For example, the rate in France, with no regulation, is much higher than the Netherlands.
Intentional hastening of neonatal death in the Netherlands is rare
Most neonatal deaths occur either quickly with no medical intervention, or intensive treatment proves futile and palliative (comfort) care is administered until death.
The (Groningen) Regulation has been further restricted since it was first formulated
It has not been 'relaxed' as claimed by some opponents.
The Regulation is separate from and completely unrelated to the Netherlands' Euthanasia Act
The Euthanasia Act is only for mentally competent adults (and 12-16 year olds with parental agreement).
Physicians do not receive black-letter law protection as they do under the Euthanasia Act
Reporting, investigation and acceptance requirements are even more rigorous than under the Euthanasia Act.
The rate of intention to hasten neonatal death has decreased since the Regulation came into effect
In eight years prior to Regulation there were twenty two reported cases, and only two in eight years since Regulation.
The rate of medical end-of-life decisions with an explicit intention to hasten death was 8–9% prior to Regulation, dropping to 1% after Regulation.
The use of neuromuscular blockers has decreased.
Physicians report improved communication with parents
Shared decision-making and better opportunities for parents to grieve the loss of their child.
There are clear explanations for the decrease in neonatal euthanasia in the Netherlands:
Physicians report they are fearful of prosecution under the Regulation, so they now more often administer palliative care not intended to hasten death.
A folate supplementation program for pregnant females has resulted in a substantial drop in the rate of spina bifida and related disorders.
An antenatal screening program at 20 weeks has resulted in a higher rate of pregnancy terminations for major congenital disorders.
In conclusion
Despite all these facts, in an epidemic of 'confirmation bias' that drove misinformation contagion, many anti-euthanasia commentators have published false claims about '650 babies euthanized' under the Dutch Groningen Protocol. I provide a forensic examination of the issue in the latest edition of the Journal of Assisted Dying.
This is not the first example of how opponents of assisted dying widely circulate information that is untrue (e.g. check out the Council of Europe Declaration 1859 case), and it won't be the last. However, for opponents of assisted dying to avoid egg on face, I'd recommend:
Neonatal deaths under Dutch Groningen Protocol very rare despite misinformation contagion
Author(s)
Neil Francis
Journal
Journal of Assisted Dying, vol. 1, no. 1, pp. 7–19.
Abstract
The Groningen Protocol specifies criteria for the potential termination of life in severely ill newborns in extremis with untreatable and unrelievable conditions. In September 2006 the Netherlands formally adopted a Regulation incorporating the Protocol. Despite the Regulation’s development through extensive professional consultation, endorsement by the Dutch Paediatric Association, empirical data showing a decrease rather than increase in use, and research showing that neonatal euthanasia occurs around the world in the absence of regulation, the Dutch Regulation has sparked controversy. More recently it has been claimed that hundreds of babies a year are killed under its provisions. Forensic analysis reveals the claim to be comprehensively and evidentially false. Wide online dissemination of the claim by mostly religious sources demonstrates confirmation bias and misinformation contagion.
Francis, N 2016, 'Neonatal deaths under Dutch Groningen Protocol very rare despite misinformation contagion', Journal of Assisted Dying, vol. 1, no. 1, pp. 7-19.
Blog by Neil FrancisPosted on Thursday 23rd July 2015 at 1:22am
The Victorian Premier doesn't support assisted dying law reform - at this stage.
Victorian Premier Daniel Andrews reports that he doesn’t support voluntary euthanasia “at this stage” (The Age, 21 Jun 2015), and that his objections are not based on his Catholic faith. I think it is fair to take him at his word given his historical record in facilitating conversation and reform around values-based issues such as abortion. But his current thinking on assisted dying is indefensible as I explain.
We know from repeated Newspoll Australia studies that amongst the millions of Victorians who want the State to respect their wish to make their own choices at the end of life, three out of four Australian Catholics are in favour of legalised assisted dying—at odds with the ‘traditional’ Catholic stance. Mr Andrews, like a majority of Catholic Australians, may simply not agree with the Vatican line on assisted dying choice, as they don't on a range of matters.
Mr Andrews says that his current objections instead revolve around ‘safeguard’ and ‘balance’ issues in a context of finite healthcare resources.
The Medical Treatment Act 1988 confers the right to Victorian patients to refuse any medical treatment. The right applies even if the treatment is life-saving, for example a simple blood transfusion. The Act contains no ‘safeguards’, as the Premier refers to them:
The patient is not required to give any reason;
The doctor is not required to inform the patient of their condition or likely consequences of any treatment or its refusal;
The doctor is not required to consider or assess the patient’s mental capacity to decide including depression;
The doctor is not required to recommend a palliative consult (if relevant);
The doctor is not required to consult any colleagues for a further opinion about the patient’s illness or mental capacity;
There is no obligation on the patient to consider their decision again after a short time;
While there is a standard form 'Refusal of Medical Treatment' document that can be signed to provide documentary evidence of the refusal, it is not mandatory;
There is no mandated path of reporting or review.
Indeed, a doctor who goes on to administer medical interventions to the patient who has refused them is guilty of the offence of ‘medical trespass’ and can be prosecuted.
Further, it is quite legal for a patient to decide to die by voluntary refusal of food and fluids, an option suggested as appropriate by Dr Bill Sylvester in an IQ2 debate at Melbourne Town Hall in November 2012, to a hostile reaction from the audience. Some doctors provide respite care to patients choosing this path. however, like refusal of medical treatment, there are no legislated safeguards.
On the basis of these two kinds of end-of-life decision making that have been lawful for at least a quarter century in Victoria, and which have no legislated safeguards, what evidence do we have of the so-called ‘slippery slope’ of resource-strapped healthcare providers or greedy relatives persuading the sick to choose a path to die earlier rather than later?
Both Victoria Police and the former Minister for Health, the Hon. David Davis, have advised that there are no known prosecutions under the provisions of the Medical Treatment Act 1988 for such inappropriate persuasion.
So, in Victoria we have the experience of two forms of decision-making whose direct and foreseeable consequence is death, with no mandated safeguards and within 'finite healthcare resources' (which Mr Andrews refers to as his reason), not resulting in prosecutions for persuasion to 'choose' death.
If Mr Andrews’ argument is that terminally ill Victorians ought to be denied the right to choose assisted dying because of supposed slippery slopes of persuasion, that argument would exactly and equally apply to the refusal of life-saving medical treatment and to the refusal of food and fluids.
Surely his Government is not suggesting that the existing rights be rescinded: that patients be forced to receive any and all life-saving and life-prolonging treatment in order to avoid a 'persuasion' bogeyman who doesn’t exist?
The Premier's stance is even less defensible in the light of proposed assisted dying legislation which includes a suite of checks and balances that are absent from existing rights.
Some dying individuals, reflecting upon their circumstances and deeply-held values and beliefs, determine that alighting from the train of terminal illness one or two stops before the terminus is a vastly better option than being forced to endure the train ride until the very end. We compound their indignities by saying it’s OK to decide to starve yourself to death (and we might even provide support along the way), but not OK to decide to die peacefully surrounded by loved ones at a predetermined time.
It is commendable that the Legislative Council has resolved to investigate the issue of end-of-life decisions, and whose final report will better inform the Premier and all Parliamentarians. Submissions to the Committee are open until Monday 31st August.
Blog by Neil FrancisPosted on Sunday 14th June 2015 at 4:13pm
The Council of Europe chamber in session.
On the 25th January 2012, the Council of Europe passed declaration 1859 on advance care planning. Immediately, lobbyists opposed to assisted dying loudly proclaimed that the resolution banned euthanasia across Europe, when it did nothing of the sort. What actually happened?
Declaration 1859 on advance care planning
The Strasbourg-based Council of Europe passed declaration 1859 on 25th January 2012. The declaration was about advance care planning, which allows patients to inform others about what treatments they would or wouldn't want if they become unable to participate in treatment decision-making.
The declaration made the explicit point that it was about advance care planning and not about euthanasia or assisted suicide. It made the point that non-voluntary euthanasia is unacceptable—that is, that others should not make death-hastening decisions about a person for their 'alleged benefit'. This is an important point on which both sides of the assisted dying debate can agree.
Council of Europe resolutions are informative to members, but are not binding.
Misstatements by opponents of assisted dying
Despite this simplicity and clarity, the very next day after the vote, a host of conservative religious organisations and commentators began trumpeting that "the Council of Europe banned euthanasia across Europe." It started with the Catholic Church (through its online service Zenit) and sprinted right around the world in a matter of days—even appearing eventually in a professional journal paper two and a half years later.
What really happened: the evidence
But no matter how often and how loudly lobbyists try to claim that the Council of Europe banned euthanasia across europe, it did nothing of the sort.
Read the forensic analysis of the misinformation trail in the F files, here.
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)
