What Is the Latest on the End-of-Life Bill ?


What is the latest on the end-of-life bill?

In the aftermath of the conclusions of the Citizens’ Convention last April, Emmanuel Macron announced an end-of-life bill before the end of the summer in 2023.

A bill to change the circumstances of the end of life

Initiated following the CCNE (National Consultative Ethics Committee) report, issued in September 2022 and opening the way for the legalisation of assisted suicide and euthanasia, the debate opened with the wish to reconsider the “end-of-life circumstances”, in contradiction with the claimed neutrality of the ex-minister delegate in charge of territorial organisation and health workers, Agnès Firmin-Le Bodo, among others.

A draft bill which introduces the lifting of the prohibition to kill

Following repeated delays, a draft bill was revealed in Le Figaro on 13th December 2023, less than a week after the presentation of a report entitled “Towards a French model for accompaniment care” and whose proposals are due to feed into the new 10-year plan for the development of palliative care.

The draft version of the text of the law dated October 2023, has 3 parts:

  • Accompaniment care,
  • Patients’ rights
  • Assistance in dying.

The possibility of being able to receive an administered lethal substance would be restricted

  • To French adults,
  • Suffering from “a serious and incurable condition which threatens their life expectancy in the short or medium term” (within a window of “6 to 12 months” – it should be noted that according to an article published in the British Medical Journal, the diagnosis by doctors on the residual life expectancy of patients at their end of life is accurate in a mere 20 % of cases!)
  • Or experiencing “constant or unbearable physical suffering” associated with their disease.

The document provides for self-administration, i.e. assisted suicide, in principle, and administration by a third party (carer or close relation), i.e. euthanasia, in the event of physical incapacitation.

This draft bill consecrates medical omnipotence since it is up to a single doctor to authorise the patient who so wishes to resort to assistance in dying. Worse still, it even considers “reverse life-saving” to hasten death if the dose of lethal product proves inadequate to cause rapid death. As for sanitary or medico-social establishments, they would be deprived of any conscience clause.

Finally, at cross purposes with the rich and complete definition of palliative care provided by the World Health Organisation (WHO), the draft bill limits it to “medical care strictly intended for pain relief.” This restriction is of great concern since palliative care would in the end be incorporated within “accompaniment care”. The fear is that the latter would act as a “Trojan horse” for assisted suicide and euthanasia.

The text was immediately met by opposition from numerous organisations of doctors and nursing staff who denounce its “meagre content” in a communiqué issued by a grouping of geriatricians and carers specialised in palliative care.

What place is left for palliative care?

The opening of the debate on the end of life has highlighted the inadequate development of palliative care. During his presentation to the participants in the Citizens’ Convention in April 2023, Emmanuel Macron declared: 

“I believe that a unanimously recommended solution must now be rigorously implemented. We must better apply the Claeys-Leonetti law, as has already been clearly underlined by the National Assembly evaluation mission. We have an obligation on the subject to ensure universal access to palliative care, to disseminate and enrich our palliative culture and to review our policy for the accompaniment of bereavement.

The national strategy for the development of palliative care (initially scheduled for January) is to be revealed before the President announces the orientations adopted for the bill now referred to as the bill on “active assistance in dying” by Prime Minister Gabriel Attal. The expectations are considerable regarding the funding of the plan because the credibility of what is being announced as a priority will be measured in relation to the additional means to be allocated.

As a reminder, the overall budget for the 2021-2024 plan for the “Development of palliative care and end of life accompaniment”, of some 171 million euros, represents an effort of a yearly increase of 2.85%, which is less than the rate of inflation (at an average of 4% since January 2021). Whereas the PLFSS (Social Security funding bill) was adopted without mentioning any additional funding to be provided for palliative care.

Although the need to deploy palliative care nationwide enjoys unanimous support, many are those who are concerned at seeing this aspect incorporated in the end-of-life bill. “Does this mean we shall have to wait for the law to be adopted, at best by the end of 2024, to establish the announced revolution in the care of the sick, whereas it is well known that 50% of the needs in palliative care are not satisfied and urgent action is required?“, wonders Claire Fourcade in La Croix.

Following the about-turn by the CCNE, Alliance VITA has been alerting about the promise of developing palliative care in order to help carers to swallow the lethal pill of euthanasia and assisted suicide. The right for access to palliative care is guaranteed by the 1999 law and the priority should be to implement that law, there is no need to pass a new law.

Health workers as well as parliamentarians have pleaded for palliative care and assistance in dying to be covered by two distinct texts. The new Minister delegate in charge of Health and Prevention, Frédéric Valletoux, in September 2023 contributed a column in L’Express calling to dissociate assistance in dying from palliative care.

His Minister in charge, Catherine Vautrin, the Minister for Work, Health and Solidarities seems on her part to confirm that the text will include two blocks: the management of pain through the ten-year old strategy for the development of palliative care and the establishment of “assistance in dying” i.e. assisted suicide and euthanasia.  On 14th February, the Minister declared that she was “very proud to present this text”.

What is the time-table for the French model for the end of life?

After meeting representatives of the main religions in France, doctors and other personalities, on Thursday 9th February, the President must make the “final decisions” during February.

In substance, nothing new has leaked out following this meeting, apart from a sentence by Emmanuel Macron, reported by the co-president of the Buddhist Union in France: “To manage to find a space which is neither a freedom nor a right, but merely a possibility which would be the least evil […] that is the question which needs answering. The state of the law does not currently manage it completely. That is duly acknowledged”.

On his part, Gabriel Attal assures that the bill on “active assistance in dying” will be examined “before the summer”, whilst promising to “considerably” reinforce the palliative care units.

In fact, by focussing on the possible legalisation of euthanasia and assisted suicide, the debate on the end of life prevents consideration of all the other questions surrounding the end of life: Where will we die? Will we be properly accompanied? Will there be adequate pain relief? How to fund home nursing? How to support local carers? How to ensure we age well?

In that regard, although the Senators have adopted a bill to “establish a society for ageing well in France”, the political leaders and the professionals who accompany the aged are still waiting for a presentation by the government of a law to establish the means for facing up to the shock of the ageing population! As for the health system, its dysfunctions are a major concern for the French public whose priority is nationwide access to health care rather than access to assistance in dying.

Concerning the mission to re-evaluate the Leonetti law in 2008, Robert Badinter, who died on 9th February, had stated: “Nobody can end another person’s life in a democracy.” if only those words could be heard by those in charge.

Further reading:

  • Time for action! Appeal to the Health Minister!
  • Chronicle by Tugdual Derville in Famille Chrétienne : “Bill on the end of life: the government’s “mortal logistics”

Press release: Palliative care: beyond the intentions, what are the means?

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