Deep Sedation: France is in danger of buying a deadly illusion.
Dr Kevin Fitzpatrick OBE, is the director of EPC International and lives near Avignon France. Article first appeared on Alex Schadenberg's blog.
France is in danger of buying a deadly illusion: that terminal sedation is neither assisted suicide nor euthanasia. In the Netherlands it can be both, and the numbers of people being terminally sedated there are growing at an alarming rate. From the minute the Assemblée Nationale should pass any such legislation, terminal sedation will become the lie to hide the practice of euthanasia throughout France too.
On Tuesday March 17, 2015 the French parliament overwhelmingly voted to give people the right to demand terminal sedation – that is, for them to be made unconscious in their last hours and days. We have been warning about the steep rise in the use of terminal sedation in the Netherlands, as a form of ‘back-door’ euthanasia.
In the Netherlands, only informed adults who meet all the criteria of the Dutch law are counted as euthanasia deaths. None of those who are unable to give informed consent, a key element of the Dutch law, are counted. So no neonates killed because of their disabilities, no older people with dementia, or those in persistent coma, no-one who finds some doctor willing to ‘grant’ them a euthanasia death because they fail to meet Dutch legal criteria. Those who die through terminal sedation are not generally counted either, but the rise in their numbers is frightening.
Even in those cases where deep sedation is a serious consideration, for those few individual people whose refractory symptoms cannot be managed by modern palliative medicine, profound questions remain to be answered. But in the 1990s this group was estimated at below 5% of all cases. Today palliative care specialists, and advances in their field, mean that fewer than 2% of patients are faced with terminal sedation as their only option. Of course every individual deserves our best response, but if their numbers are falling why then should terminal sedation be on the rise at all? In the Netherlands or anywhere else?
To create a specious ‘right’ to die by terminal sedation as the French propose, is yet another hoodwink – it allows a larger public to believe this is all being done so maturely, with such compassion, and somehow manages to avoid all the thorny questions about assisted suicide and euthanasia. It does no such thing. And simply claiming that such deaths will be neither assisted suicide nor euthanasia cannot change the fact that, often, this is exactly what they are.
Administering a lethal dose in order to bring about death is killing, it is murder, and many French doctors have spoken out against the latest proposal having no wish to be drawn over to this sinister side of the debate. Administering a dose to relieve pain which may have the double effect of ‘hastening death’ is not always subtly different. The question is: who can tell? A doctor, a nurse, a pharmacist? The relevant information is usually guarded or hidden, but we may hope to be able to find out. Hidden intentions are so much more difficult to unearth. Protesting doctors know that from their own experience.
President Hollande is said to have been convinced of the need for legalised euthanasia by the death of his mother Nicole in 2009. The Claeys-Leonetti proposal that calls for terminal sedation on demand has garnered cross-party support, something the beleaguered leader needs after other failures have seen his popularity drop below that of any previous incumbent of the highest office in France. The point here is that political careers can be built or can fall on such ‘opportunties’ – this is never a clean debate.
The Dutch and the Belgians openly admit their legal frameworks were intended to ‘regularise’ already existing and illegal practice, they say ‘so as to avoid abuse’. Yet those illegals acts, so prevalent it took new legislation to accommodate them, were never prosecuted. And avoiding abuse is so far from what has happened in either country, when under-reporting remains at nearly a quarter of all euthanasia deaths in the Netherlands. Research suggests the rate of unreported deaths is even higher in Belgium. But in Belgium the leading euthanasia practitioner heads up the oversight committee, which has never referred one euthanasia death reported to it for investigation. It is easy to see why doctors might not even be bothered to report. Or why nurses are committing euthanasia, which is also illegal. 
The Belgians also openly admit their law was framed to support suicide for disabled people, and insist this is a matter of patient choice. The inherent discrimination against disabled people is exacerbated by entirely removing patient choice into the hands of a third party, usually a doctor. In another terrible irony, the lobby for assisted suicide/euthanasia argue that no-one should be ‘forced’ to spend their last moments unconscious. They cannot have it both ways.
In France, the debate has spilt Assemblée deputies – 121 of them co-signed an amendment to legalise ‘active medical assistance to die’ which would come worryingly fast – the patient’s demand for euthanasia would be confirmed over 2 days, and 3 doctors’ opinions would see the person dead in just 4 more days, with no serious controls in place apart form a mention in their medical notes.
The choice will be between "double-effect sedation" and barely disguised euthanasia. It is not cynicism that makes me say the majority of the sedation deaths will be euthanasia deaths, it is experience. I bitterly regret that part of human nature which will move so swiftly and seamlessly to the worst edges of practice – the fact is, once it ‘becomes legal’ so many who stop now, pause and ask themselves ‘Is this really right?’ will simply shrug and say instead ‘Well, it’s legal now’ – that is one of the conditions those people need to bury the last vestiges of their consciences in ‘I’m only following orders.’ Now where have we heard that before? In that other great and most destructive illusion…
(1) Agnes van der Heide, et al ‘End-of-Life Practices in the Netherlands under the Euthanasia Act’ New England J Med 2007; 356:1957-1965 May 10, 2007 DOI: 10.1056/NEJMsa071143
(2) Heintz, A P M (1994) 'Euthanasia can be part of good terminal care' British Medical Journal vol 308, p1656
(3) From private conversation with a palliative care specialist
(4) Alex Schadenberg Exposing vulnerable people to euthanasia and assisted suicide ISBN 978-1-897007-27-3