Thursday, June 25, 2009
Lancet has an editorial about euthanasia (by a palliative doc and UK Member of Parliament**) and the shift in the UK debate about euthanasia from 'relief of suffering' to 'patient choice/control.'
It begins provocatively:
The rest of the editorial discusses a renewed focus within the UK debate on choice/control. It's an issue we've discussed before on the blog, and in some ways reflects, at least in my opinion, a focusing of the debate onto the issues that most drive requests for/interest in assisted death (assisted suicide and euthanasia) where it is practiced: it is not actually used as a last resort option in patients suffering intractably (at least physically). Palliative/terminal sedation (let's leave aside debate about what term to actually use) is used in these scenarios (generally speaking - even in the Netherlands where both TS and AD are practiced it seems TS is generally used to treat active/current intractable physical symptoms like pain, dyspnea, restlessness). Assisted death, generally, is sought by those who wish to control the circumstances of their death, and are worried about future indignity, loss of meaning, and symptoms.
“I have never seen such a clear cut case for euthanasia” were the general practitioner's words when he referred to me a young man with a fungating malignant spinal tumour. The patient's distress was palpable and compounded by neuropathic pain. But, most of all, he hated losing control through creeping paraplegia and through his increasing dependence on his young wife, who was struggling to cope with their two children and 7-week-old baby. He asked me to end it for him, and his request persisted for several weeks. He would have passed all the tests about mental competence that euthanasia campaigners suggest and appeared to fulfil all the criteria in legislation from other countries: he was terminally ill with a short predicted prognosis, suffering unbearably, persistent in his competent request, fully informed, and had no psychiatric condition.
That was 1991. In 2001, he telephoned me to say that his beautiful wife had been diagnosed with pancreatic cancer. She died some months later, and he has brought up their children alone, aware that the law in Britain had saved them from being orphaned. Yet the media campaign for legalising what is euphemistically called “assisted dying” rarely shows this side of the coin.
So actually framing the debate this way seems to me to be, at the very least, honest, and for it or against it I think it is appropriate to at least have the discussion about assisted death in the context that in real life it is not generally used for the relief of active (somatic) suffering but for more existential reasons around loss, control, etc. To rephrase: the actual debate about it should less be about whether it is necessary to have access to euthanasia as a way to 'treat' intractable suffering and more about patients' rights to have medically-assisted deliberate hastening of death for (the complex of interrelated concerns around control/loss/dignity that I'll paraphrase as) 'existential' reasons.
While absolutely acknowledging that this is indeed why most patients seek assisted death, the author is concerned this shift in the rhetoric/justification for euthanasia/assisted death is tied with a (what she states is at least for some an intentional) de-linking of assisted death from terminal illness itself. And, apparently, this is happening. She discusses some draft proposals being tossed around in the Scottish Parliament:
Her consultation document, intended as a prelude to a bill in the Scottish Parliament, proposes to legalise euthanasia not only for people who are terminally ill but also for others “enjoying otherwise satisfactory health but with degenerative, irreversible conditions”, for “patients who unexpectedly become incapacitated to a degree they find intolerable”, and to people “who are not terminally ill, suffering from a degenerative condition, or unexpectedly incapacitated but who find their life to be intolerable”. These wide-ranging proposals seem a natural consequence of the shift in emphasis of the pro-euthanasia campaign from the relief of pain and other symptomatic distress in the dying to an agenda based on personal choice and control.I have written on the blog before that I'm essentially against the legalization of 'assisted death' practices (physician assisted suicide and euthanasia) as for me I do not think that loss of meaning/choice/control are sufficient reasons to have medical assistance with dying. I understand why people (at least a substantial minority if not a majority of Americans) are for the legalization of assisted suicide. One of the leading proponents of its legalization once told me that we can say all we want about the effectiveness of palliative care and, if needed, palliative/terminal sedation, but many patients just don't trust us to be there for them. I also think about what my patients go through sometimes and ask myself 'Yikes, would I really go through that myself?'
For me, thouth, it's about the role of medicine in these scenarios - is this loss of meaning (or however you want to describe the existential issues at play here) and desire for control the domain of medicine or not? Something which should be 'treated' medically? I basically come down on the side of 'No.' Acknowledging that I do treat this 'medically' all the time of course, with antidepressants for 'depression' even at times when I suspect it's not this organic brain disease called 'depression' but Something Else; or with benzodiazepines for 'anxiety,' etc. This is perhaps hypocritical, and makes me wonder if I've decided that it's not that it shouldn't be medicalized, but that it shouldn't be medicalized 'in that way' so to speak.
Regardless of this, I do think it's possible to have this debate and not de-link assisted death with terminal illness. I accept that this delinking is happening but don't think it is inevitable....
These issues aren't going away, and am interested in what others have to say about this.
**Sounds like a good combo to me and something we should try stateside. Hmmmm...Diane Meier?