Protocols, posturing and paradoxes

Recently the ABC's Q&A program focussed on the issue of euthanasia. Some called it, 'The Denton Show' given the dominance in the time given to (and taken by) former comedian, Andrew Denton in espousing his zeal for assisted suicide as a panellist. 

Audience member, Luke Formosa, after a pre-amble asked Denton: "How do you propose Australia's euthanasia laws would protect the most vulnerable people, when the example in The Netherlands and The (sic) Belgium are showing the exact opposite?"

Denton did attempt to answer Formosa's question in an oblique way but preferred to focus upon the claim that the 2014 Dutch report on euthanasia deaths had noted that, '550 newborn babies with diseases or disabilities were killed'.

Denton disputed this claim, and rightly so. I had never seen such a claim made. I had heard that numbers of deaths of newborns under what is known as the Groningen Protocol had, at some stage, reached double digits; but that was years ago. Denton mentioned maybe a dozen babies but afterwards corrected himself in print adding that, in an interview, the author of this protocol Dr Eduard Verhagen mentioned only two deaths since 2007.

Formosa's error was a gift for Denton, allowing him to further cultivate the status of 'expert' in what had the appearance for mine of a form of Gnosticism where we, the barely able public, are fed selected morsels and doled paternal corrections from this font of all knowledge and wisdom. Errors like that unfortunately also feed the 'fact check' behemoth.

Since August this year the online newsgroup, The Conversation has taken on a 'Fact Check' role for the Q&A program. With the agreement of the ABC, The Conversation website states that it, 'will hold Q&A panellists more accountable by fact checking their most significant claims.' It goes on to describe a rigorous checking process. Various items and comments on the website suggest that the 'Fact Check' role goes beyond just the panellists. Their check on Mr Formosa's claim in respect to the Groningen Protocol and the deaths of babies bears this out.

To their credit, they did give Formosa an opportunity to make his point on the pages of their website. Formosa agreed that he could not prove the figure mentioned. He did, however, provide some references to academic and other articles that he suggests supports his more general claim that there are 'shortcomings' in the Dutch system.

The Fact Checker did locate and acknowledge that an article on a pro-life website in January this year made an unsubstantiated claim to 650 infant deaths in 2013. Not the same number, certainly, and no connection is suggested between this and Formosa's claim - even though Denton's response could be easily read as attempting to connect the two by some conspiracy.

Why am I mentioning all this? Partly in defence of Formosa, for what was most likely a clumsy mistake; and partly because Denton attempts to use this situation to smear those who stand in opposition to his new found passion. Formosa clearly opposed euthanasia and assisted suicide. But was his error a matter of a deliberate lie? I don't see how anyone can suggest that, especially as he will have known that Denton would likely be across the data (as he indeed was), and an error like that would, therefore, always likely to be found out. A mistake, a memory failure, who knows?

I don't know Luke Formosa and I cannot, therefore explain fully his motivation. But generally speaking, those of us who oppose euthanasia do so for philosophical, religious, human rights or professional reasons or a combination of the above and perhaps more. Like many and maybe most on 'the other side' we do not lack compassion. Those who believe passionately in a cause will always seek to make a case, and, given the limits of the Q&A opportunity, to make an impact.

Formosa's error has no logical connection to what Denton suggested in his reply are 'cruel and deceptive but also deliberate' misrepresentations of the 'Netherlands response to the terrible suffering of terminally ill neonates' by people putting the 'No' case in Australia. But that is precisely how Denton characterises the anti-euthanasia position in respect to the Groningen Protocol. Formosa's error, in Denton's view, is obviously a part of some sort of Group-Think.

What are these 'misrepresentations' that are being so cruelly and deceptively put abroad?

'We checked official published reports and sought interviews with primary sources to test the validity of the oft-repeated claims that in the Netherlands, euthanasia law has resulted in doctors killing babies.' says Denton. He then attempts to drag Sydney's Archbishop Anthony Fisher into his own little 'fact check'. Fisher's dastardly deed was to mention the euthanasia of babies a number of times and to once use the term 'Groningen Protocol' in his debate on euthanasia with Peter Singer in August.

Before 2005, as Vehagen notes there were around two or three reported cases of euthanasia of newborns each year in Holland, even though other research suggests that the real numbers may be significantly higher. The Groningen Protocol for 'Euthanasia in Severely Ill Newborns' was developed, written up in The New England Journal of Medicine and accepted by the Dutch Paediatric Association in 2005 and endorsed by a parliamentary committee setting review standards for reporting, in 2007.

The practice of euthanasia for adults existed under judicial fiat in Holland as far back as 1973 in the Postma case with further precedents set in court cases in the 1980s, medical interpretation and protocols being developed in later years before the law was finally introduced in 2001.

Denton seems to be saying that people such as Archbishop Fisher is claiming that there is a relationship between the existence of euthanasia law and the development of a system for 'doctors killing babies'; what some might call a 'slippery slope' connection. The chronology certainly suggests the possibility. It is legitimate to wonder whether or not a protocol to allow doctors to kill neonates would ever have been considered if, in fact, euthanasia in the adult population were not being practiced as it had been for some 30 years at that point.

Denton said he wanted to test the validity of such a claim. Clever. No one can give an iron clad answer either way as he would well know. The author of the protocol, Dr Verhagen, however, gives us something of a hint: 'I think it's important to realise that we're not saying that everyone should adopt Groningen Protocol. The reason that we have it is very much related to how the Dutch deal with death.' There you are: it's a Dutch thing!

But what I find most interesting is Denton's use of the phrase: 'doctors killing babies'. He uses similar words twice in his interview with Verhagen; each time paired with the word 'sinister' so as to suggest that to say: 'killing babies' is somehow a deliberate exaggeration of what is really happening. Yet Verhagen doesn't avoid the reality: '(W)e developed a protocol, known as the Groningen Protocol, for cases in which a decision is made to actively end the life of a newborn.' Ending a human life is homicide, adding compassionate grounds makes it euthanasia - but it is always killing.

Reality can be harsh. Every parent's heart leaps out in compassion at the thought of a child in peril of its life. Simply because people like Archbishop Fisher, Mr Formosa, myself and others don't necessarily express such sentiments during debate or at any time the protocol is raised is not proof that we're part of some heartless breed; that we engage in, 'cruel minimisation of the awful decisions the parents of these babies had to face' as Denton puts it. The fact that he so easily adopts this high indignation as the default position is really more a matter of tactics than about our disposition.

We certainly do reject The Groningen Protocol; just like many in academia did at the time that it was made public. We do so for a variety of reasons: many see it as eugenic - the destruction of life based on characteristics of disability; many see it as the outworking of Professor Singer's utilitarian views; some reject the notion that any parent has the right to consent to the direct killing of a minor in their care; some question whose suffering is really being eliminated here. Most, perhaps, have an over-riding concern about the breech of the dictum: Thou shalt not kill. Whether religious or not, that statute prohibition actually protects people.

And yes, we do see the possibility that this is sinister. But we don't fall into the trap of suggesting that simply because we reject the outcome as sinister and morally questionable, that therefore, those who are assessing and then killing these children are evil persons with sinister intent. That may not be the case; they may be motivated by compassion. But motivation and intention are different things, Mr Denton.

And if you had any further reason to doubt the outrage that many feel towards the killing of neonates, one need only consider Verhagen's own review of neonatal killing in Holland published only a few months before the Groningen Protocol in 2005 where he described the known (reported) cases over the preceding seven years:

"In January 1997-June 2004, 22 cases of deliberate termination of life in newborns were reported. All cases concerned newborns with spina bifida and hydrocephalus. Deliberate termination of life was acceptable to the physicians because of the presence of hopeless suffering, with no means of alleviating the suffering. In all cases, at least 2 doctors were consulted outside the medical team. In 17 of 22 cases, a multidisciplinary spina bifida team was consulted. All parents consented to the termination of life; in 4 cases they explicitly requested it."

And while Verhagen, at Denton's prompting agrees (in the interview) that all the neonates killed under the protocol (since 2005) had 'terminal conditions' that meant they would 'die in the near future', this was not the situation prior to 2005. Of the 22 cases prior to 2005 and researched by Verhagen, 'Considerations Used to Support the Decision to End the Life of a Newborn' included 'Long life expectancy' in 13 of the 22 deaths. This 'Long life expectancy' is defined, somewhat paradoxically as: 'The burden of other considerations is greater when the life expectancy is long in a patient who is suffering'.

Rather than simply codifying existing practice, what the creation of the Protocol did, according to Dutch former newspaper editor, Gerbert van Loenen in his book: Do You Call this a Life? Blurred Boundaries in the Netherlands' Right-to-Die Laws was to actually extend the practice of the killing of neonates. Prior to 2005, the euthanasia deaths of neonates was codified by case law in two court judgements in 1995 and 1996 (Prins & Kadijk) after which, according to van Loenen, the Public Prosecution Service developed a policy to prosecute no more.

Verhagen describes three categories of disability in neonates in his explanation of the Groningen Protocol in 2005. Two categories - infants with 'no chance of survival' and infants with a 'very poor prognosis and are dependent on intensive care' were the subjects of these court-provided fiats. The third, 'seriously ill or disabled newborns who could survive on their own and were therefore not dependent on intensive medical treatment' according to van Loenen, were new to the Protocol.

If van Loenen is correct, then the Protocol itself represents something of a slippery slope that embraces the 13 of cases (59%) that Verhagen studied (and mentioned earlier); the inclusion of those with the 'burden' of a long life.

Is it any wonder that Verhagen says in March 2005: 'During the past few months, the international press has been full of blood-chilling accounts and misunderstandings concerning this protocol.' While it is fair to accept that many at that time and still today may 'misunderstand' the motivation, we see clearly the intention and the outcome and reject it. Is it any wonder, especially for people living with hydrocephaly and spina bifida, that Verhagen's report is burned into their memories?

But the numbers since then are few - almost nil - so what's all the fuss about now? Verhagen wanders down this path in conversation with Denton: 'I think the argument that is most often used against the protocol is that it would be the start of a slippery slope...So people often say once you start allowing this for very strict reasons, there will probably in the course of time be erosion of norms, and people would likely use the protocol for much less strict situations...And this picture now, we have now a ten year later situation, so in those ten years we've seen the numbers of cases decrease incredibly - so the fear of the slippery slope, I think, we've demonstrated is totally needless'.

I don't ever recall anyone saying that the protocol would become a 'slippery slope' itself, but some may have. But we cannot assume that the reduction in the numbers of neonatal euthanasia deaths and the absence of spina bifida cases in the remaining numbers is some sign that Verhagen et al were on the right track; that the creation of a protocol brought matters 'out in the open', controlled it and reduced the incidence. That is clearly not the case. Again Verhagen notes that, while he sees no evidence of a slippery slope, the other prediction that the Protocol would create 'complete transparency and legal control' did not eventuate.

Verhagen is also frank about the reason his Protocol has fallen into virtual disuse: 'since 2007 in Holland the prenatal ultrasounds are made available for all pregnant women. This is a very important decision made by the government which has resulted in an interesting phenomena. The phenomena is that babies with spina bifida nowadays are hardly born.'

Katja ten Cate and her research colleagues and her research colleagues made a similar observation in their 2014 study adding an interesting rider: 'In addition, the introduction of legal criteria and a review process for deliberately ending the life of a newborn may have left Dutch physicians with less room to hasten death.' 'Less room'? The mind boggles.

And yet, in all of this there remain acute and poignant paradoxes; realities that seem to those on either side of this debate as well as those without a firm opinion as being logically, mutually exclusive. And yet we know that there's nothing neat and trim about death and dying.

Says van Loenen:

"This is the paradox of the high-quality care in the Netherlands: we have such lofty ideals about being human, that we are dissatisfied when a person does not meet those ideals, despite our best care.

In this way an idealistic image of humankind, good care, and a medical system that threatens people can coexist together."

While we may wish it werre otherwise, Mr Denton, the threats are real and they remain.

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