Proposition of law on the End of Life: towards sedation for all?

By Tugdual Derville

Tugdual Derville is founder of A Bras Ouverts (With Open Arms), and author of “La bataille de l’euthanasie” (The Euthanasia Battle) (Salvator). He is the chief delegate of Alliance VITA and spokesman of the Kill the Pain, not the Patient group.

An expression has emerged in the End of Life debate : dying badly. Does this reflect a huge abyss in our health system, or does it express a growing anxiety before death, due to solitude and isolation ? The French National Consultative Ethics Committee (CCNE) underlines the misapplication of the June 9, 1999 law which is supposed to “guarantee the right to access to palliative care. This remains the forgotten element in our health care system.

“Both”, is the answer of the CCNE. Its’ report dated October 23, 2014 denounces “a scandalous situation over the past 15 years : the lack of access to rights acknowledged by the law, the abandoning of an immense majority of persons at the end of their life, and an unbearable end to life for a very large majority of our co-citizens”. A crushing criticism, when one thinks of the great progress medicine has made against pain – the use of morphine, for example – and the deployment of palliative care for thirty years. But precisely the CCNE underlines the misapplication of the June 9, 1999 law which was meant to “guarantee the right to access palliative care”. Palliative care is still the worst example of our health system.

And yet, on July 17, 2012, the President of the Republic had acknowledged that palliative care was very insufficient, and committed himself to “make up for this delay”. Two and a half years later nothing has been done. We are still waiting for the several-year plan for developing palliative care, which broke down in 2012. The Court of Accounts, whose February 11 report was entitled, “Palliative Care : a most incomplete commitment”, denounces regional disparities and abandoned objectives, notably regarding out-patients, and looking after the elderly in retirement homes.

Interviewed on Channel Europe1 on March 9, 2015, a 90-year-old lady who plans to commit suicide in Switzerland when she becomes dependent, admits “my children make a sad face”, even while complaining straight afterwards that “the younger generations no longer feel responsible for their elders”.

Rather than taking up this challenge with full commitment, struggling against the isolation of the elderly and addressing their feeling of abandonment, the government issues a new law. The text, debated since March 10, starts with a bold promise : “All persons have a right to a dignified and peaceful end of life.” Then, all of a sudden, comes a new “right to have a deep and continuous sedation that lasts until death“. Care-givers will be surprised at the manner in which the exercise of this new “right” is detailed. The formulas that are used encourage and maintain confusion. Is it about helping a dying person sleep, or putting someone to sleep to make him die ?

On March 6, the National Academy of Medicine brought up “the wrongful, abusive or tendentious (misleading) interpretation of the term sedation” which the ambiguity of the proposed text encourages. For them, “terminal sedation” comes down to “active euthanasia”, or assisted suicide. It is contrary to the physician’s oath of office. It is surely a new protocol for euthanasia, which appears, hidden, with the sedation associated with the stopping of hydration. Death is guaranteed in a few days. The label “end of life”, which is supposed to help the patient receive palliative care, is turned into ”stopping life”. Quite simply the word “euthanasia”, which might provoke division, is thus avoided. And thus doctors will have been deprived of the right to use any kind of conscience clause.

Putting patients to sleep and putting opinions to sleep amount to the same political logic : an easy way to expedite a complex problem, which can neither be sorted using new end-of-life protocols nor by opinion polls.

The thorough inquiry of the Ethic Reflection Space in Picardie that ended in February 2014 showed this. Out of 1523 transcriptions collected about ending life at home, the subject of “helping to die”, came up only marginally (93 transcriptions), and is seen essentially either as a temptation (81) or as a fear (8); and in only 3 cases as an attraction.

In the end, it is a false choice which is imposed on parliament members – either on one hand, a new but useless law about the end of life, dangerous and already immoral, abusively presented as a consensus; and on the other hand the one-upmanship by presidential majority members to amend it towards being explicitly pro-euthanasia. We have every reason to launch a call-to-action.

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