I argued recently on radio that we need to respect people's choices in regards to what they do and do not want to accept as treatment when facing a life threatening medical situation; even when this means the refusal of palliation for pain and symptom management.
It might seem strange to try to think of circumstances where people at the end-of-life might want to refuse palliative care, but it does happen. Without going into details, a recent case in our family comes to mind where such refusal was both reasoned and heroic.
Euthanasia bills will often prescribe that persons seeking euthanasia would need to be informed about all their options - including palliative care. Reasonable enough, one might observe. Some might take up some or all of their options while some might decide against any intervention. No-one can force people to accept treatment against their will.
But for someone deciding that they want to seek euthanasia and or assisted suicide, the total refusal of pain and symptom management might provide them with something of an accelerated path to the point where they would qualify for a lethal injection; when their symptoms are such that they're 'hopelessly ill' or 'suffering intolerably'.
There may well be good reason to believe that their suffering could be alleviated; but this immaterial. If the treatment is not acceptable to them, then it's off the agenda.
I once heard a story from a friend in Belgium about a man hospitalised for tests who, upon receiving a difficult diagnosis, demanded euthanasia immediately. My friend said that the man may have yet had many months - even years - ahead of him; but he got his wish and left a bereft and angry wife to pick up the pieces.
I summarized my radio comments by asking the question: in respecting people's right to refuse treatment how is it, in the face of such a choice to refuse palliative care, that society should be forced to provide euthanasia?
Taking this choice mantra further to point to just how ludicrous this situation could be; what if a patient then refused the lethal injection or refused to swallow the lethal cocktail? Would we then be obliged to fly them off to Dignitas in Zurich or to help them make a nefarious online purchase from 'you-know-who'?
But this is precisely the kind of thinking now evident in the pro-euthanasia and assisted suicide movements. Not satisfied with their lack of progress on the legal frontiers, their advocacy extends into the 'do-it-yourself' arena in ways that pose a significant risk to public safety. Not satisfied with the strength of their own rhetoric, they often move to damage the public perception of how people die in a medical setting; building fear upon general ignorance.
In an address to the World Federation of Right to Die Societies (WFRTDS) in 2012, Philip Nitschke railed against what he saw were the 'luddites' in that movement who shunned the 'do-it-yourself' methods in favour of legislative change only. He concluded that there was a deep rift in the movement and that the two approaches were 'mutually exclusive'. Moving on a few years things have changed significantly.
At the upcoming WFRTDS meeting in Chicago, there's an entire section devoted to 'do-it-yourself'. Former WFRTDS president, pro-suicide luminary and developer of death technologies, Derek Humphry will co-chair the session. Humphry has also developed a guide called the "How to make your own helium hood kit". Humphry lives in Oregon; as Wesley Smith observes even legal assisted suicide hasn't stopped the death juggernaut, nor will it ever do so.
Also on the WFRTDS program is Australia's other 'Dr Death', Rodney Syme talking about 'Challenging the legal system and getting away with it'. While Syme has recently and quite desperately attempted to distance the pro-euthanasia movement from the media furore over the actions of Philip Nitschke and Exit, he nevertheless also occasionally sails 'close to the wind' in terms of the law as the title of his talk suggests.
That the DIY approach is a significant risk to public safety is really a 'no brainer' as a recent case in Utah highlights. Here a man, Dennis Chamberlain, is charged with killing his wife using undetectable 'Exit Peaceful Pill' methods and then trying to get away with it by claiming that she died of natural causes. The risks of abuse are evident.
Syme, on the other hand, pursues his death advocacy by seeking to undermine the public confidence in medical institutions, selling fears about a horrible end to try to further public support for legislative change.
In a recent effort in the Melbourne Age newspaper, he tries to dismantle public confidence in palliative care just at the time a Senate inquiry into a euthanasia bill is set to commence.
In his article, rather than making his own damning criticisms, he cleverly has others do it for him. He quotes from selected observers; one making the ultimate claim that, 'there is scant evidence to support the effectiveness of specialised care for patients with terminal illnessâ€¦' Syme then attempts to convince his readers of some kind of reflective indifference to that comment when he then observes that, 'it is important to note that while there is much anecdotal evidence of the value of palliative care, there is a dearth of scientific support.' Of course, none of us wants to be seen as 'unscientific'; perish the thought! Point made, damage done.
The intent is clear. Burst the palliative care bubble and the world will beat a path towards euthanasia. This is nonsense. I wonder what the good people in palliative care services think of all this.
Syme does refer to one such palliative specialist, Roger Hunt, whom he says found that 25% of terminal patients in his service 'wanted hastened death'. This flies in the face of the testimony of many palliative specialists I have spoken to who say such requests are rare. But, regardless, what we're not told is how the requests from these people are dealt with and whether such requests abated with good care. It's essentially a meaningless statistic.
What we're also left in the dark about the standards of palliative care in the places that Syme's coterie of quoted experts is referring to. From what I can gather, apart from Hunt, the rest are based overseas. I mention this because the real problem in Australia is not the expertise and treatment know how, it is that the availability of such care is well below what the professional palliative bodies recommend and that there's an even greater disparity of access between city dwellers and our regional and remote cousins.
Syme was later taken to task for his veiled attack on palliative care by Oncologist, Dr Molly Williams:
Dr Syme skews Dr Camilla Zimmermann's 2008 research: she makes no suggestion that there is evidence that palliative care is ineffective, as Dr Syme implies, but rather points out deficiencies in research methods to spur PC researchers to greater scientific rigour. It's true that research in palliative care is difficult to undertake, but despite substantial obstacles, recent well-designed trials achieving statistical significance (including a Lancet paper by Dr Zimmermann in February) can inform this discussion.
Can we say that palliative care improves quality of life? Absolutely, if your definition of quality of life includes having improved identification and treatment of symptoms, greater personal and carer satisfaction, more effective communication of your wish to die at home, and less time spent in hospital. The data's not perfect (no data ever is), but it's compelling.
Williams is rightly critical of Syme's approach:
Having Dr Syme imply that PC doctors are trying to sedate them into oblivion is extraordinarily unhelpful in facilitating effective symptom management for these patients.
Dr Syme's implication that palliative care is the major stumbling block in enacting euthanasia reform is misleading - euthanasia is currently illegal, and palliative care workers can't change that unilaterally. Their personal beliefs are irrelevant - it will be the community that decides whether euthanasia is acceptable. If Dr Syme is serious about reform he should be putting in the hard yards crafting legislation to unambiguously and robustly protect patients from potential abuses - that's the real stumbling block, and you don't need to malign palliative care to address it.
Williams sees clearly the problems with an implicit association of killing patients with palliative care and echoing Professor Margaret Somerville's observations that doctors shouldn't be the ones doing the killing:
If euthanasia were to be legalised, are doctors really the ones who should be enacting it? You don't need a medical degree to administer a lethal dose of medication. Euthanasia is primarily a legal and social matter, not a medical one. To tangle it up with palliation means palliative care physicians really do become the "Death Doctors", and removes their focus from helping people to live as fully as they can, alienating everyone who doesn't want access to euthanasia. Palliative care and euthanasia can co-exist - we don't have to make a choice to have one or the other, and they certainly don't have to come from the same hand.
Dr Syme's attack on palliative care to garner support for euthanasia is attacking a straw man - it doesn't further the real discussion at all.
Syme's approach is bordering on desperation. It is also exceedingly dangerous. Trying to pull down social and medical institutions to further his ends is grossly irresponsible.
23/10/2014: This article was amended to remove two references to Dr Williams as being pro-euthanasia. This was an error and a mis-reading of the opening sentence in the original article. We apologise to Dr Williams. We will repost this amended article to our facebook page with an apology.