A Militant International Round Table at the Launch of the Citizens’ Convention on the End of Life

A Militant International Round Table at the Launch of the Citizens’ Convention on the End of Life

Meeting for its first inaugural session from the 9th to 11th December 2022, the Citizens’ Convention on the end of life began its work by welcoming highly militant personalities to present the experience from abroad. It was however intended to be a balanced debate where all points of view would be examined, in accordance with the principles of equilibrium and neutrality.

Announced last September by the French President, the Citizens’ Convention on the end of life started work on Friday 9th December. Organised by the Economic, Social and Environmental Council (ESEC), the French CESE, its mission is to answer the following question: “Is the framework for the accompaniment for the end of life suited to the various situations we are facing or should some changes be introduced?” To that end, 185 citizens selected at random and representative of French society in all its diversity, are to meet at the Iéna Palace, the headquarters of the CESE, for nine three-day sessions, ending on 19th March.

According to the letter of referral from Elisabeth Borne, the French Prime Minister, it is up to the ESEC to ensure that the governance of the work by the Citizens’ Convention “illustrates the principles of equilibrium and neutrality, which are indispensable to the expression of its method.”

It was intended that the first two sessions, in December, would be devoted to the rise in competence of the citizens, who have to appropriate their mandate, through the explanation of the status quo of the end of life, without expressing any point of view. Thus, on the second day of this first session, Alain Claeys, co-author with Jean Leonetti of the 2016 law establishing new rights for people who are sick or at their end of life, came to address the Citizens’ Convention on the legal framework for the end of life in France.

On the morning of the third day, pairs of reporters presented the points of consensus and dissension within their groups. Euthanasia appeared as a question causing division within all the groups, far different from the so-called “consensus” claimed by certain French opinion polls.

The final conference of this first session was devoted to a round table including representatives from other states to describe the way in which their nations had legislated on the end of life. And there, surprise, the only two nations represented were Belgium and Switzerland, i.e. the nations which have either legalised euthanasia in the case of Belgium, or legally accepted assisted suicide in the case of Switzerland. Altogether as surprising, was the choice of people invited to describe the “factual” status quo of the legislation in their nation. For Belgium, the person called was Corinne Vaysse-Van Oost, a doctor practising euthanasia and member of the supervisory commission, but also the author of several works promoting the practice of euthanasia. For Switzerland, the Dignitas association was invited, an association which provides assistance for suicide to Swiss or foreign sick patients. From the very first seconds of their presentation, the association made it clear that it militates “both nationally and internationally for the freedom of choice and self-determination up to the last moment.”

Doctor Vaysse-Van Oost started by describing the legal background to euthanasia in Belgium. She explained the conditions to be satisfied: the patient must be in a hopeless medical state and suffering “physically and mentally constantly and unbearably” with no possibility of relief and which results from a “serious and incurable” disease.

The doctor then gave a few figures. According to her, “The numbers have remained about the same over some ten years. Euthanasia cases have increased in number but that is an absolute number, because the number of deaths is increasing. We are currently still at 2.5% of deaths. There is no upward trend”. This is a strange assertion if one considers the figures in the latest report by the supervisory commission. In 2021, the commission recorded 2,700 euthanasia cases, i.e. 2.4% of the total number of deaths. Ten years previously, the number was 1,133, which represented about 1.1% of all deaths. In ten years, the percentage of euthanasia cases relative to the total number of deaths has therefore more than doubled by gradually increasing year on year. The Belgian doctor concluded her presentation with an appraisal of the Belgian law: “Twenty years on, we note various evolutions, which in my opinion are positive.”

It was then the turn of the Dignitas association to present the situation in Switzerland. Claudia Magri, the Dignitas spokesperson, presented the association’s activities, which accounted for some 15% of the assisted suicides in Switzerland in 2021. Then she outlined the legal framework for the practice, and described the different stages involved in an assisted suicide. Following on, Irène Ta, introduced as an “accompanying assistant”, gave a witness account of the unfolding of an assisted suicide, in a soft voice: “The important thing, is to create a space where all who are present feel assured that the procedure will end well. […] We create, and I believe that we succeed practically always, in creating a space for everything to be accomplished in a calm, peaceful and reassuring atmosphere for both the family and the person involved. […] In the end, we often receive comments such as: Thank-you very much! We never imagined that at the end of a day like today, we could feel such gratitude, deliverance and relief.”

Then came the time for questions and answers. One participant asked whether the practicians see the limitations of the legal framework prevailing in their nation. For Corinne Vaysse-Van Oost, apart from the lack of independence of the supervisory commission  identified by the ECHR, and which should be resolved by a new law, the main problem is that the law does not authorise euthanasia of people suffering from dementia, in particular those suffering from Alzheimer’s disease. A few moments later, she stated that this is the main tension which exists with the current law. “We are pushing to extend the law in that direction, but doctors are reticent.” On the question of a possible accompaniment for the carers practising euthanasia, the Belgian doctor replied: “In due course, all doctors and carers will have to face up to the fact that death is part of life and that eventually, we would hope that palliative care should disappear such that all carers could be trained in the “accompaniment for the end of life.” She continued by wishing that nobody should “cry out in dismay” when a person claims to be fed up with life because they are 90 years old and blind and deafWe are however a far cry from the “intolerable suffering” situation resulting from a “serious and incurable condition” which is engraved in the law.

It is astonishing, that when describing the end-of-life arrangements abroad, only such militant personalities were invited to speak, who presented an unambiguous appraisal of the practice of euthanasia and assisted suicide. This is all the more surprising inasmuch as the President of the Citizens’ Convention governance committee, Claire Thoury, introduced the round table by underlining that the objective was “to provide as factual as possible a presentation of what is happening in those nations.” How can one remain factual when personally practising euthanasia or assisted suicide?

One might also wonder, as did one of the pairs of reporters, why the organisers failed to invite to the round table any representative from a third nation which has followed a different legal route. Claire Thoury claimed in introduction a lack of time…We shall see in January whether another foreign experience will be presented as announced. We shall also see whether the citizen members of the Convention will be able to hear other accounts from Belgium or Switzerland, from patients and their families, or, in Belgium, from carers who accompany their patients differently, for example.

As laudable as the declared intentions of neutrality and equilibrium may be, one gets the impression, in the aftermath of this first session, that the organisers have not really complied with those instructions…which risks discrediting the Convention.

 

 

Estimation and Analysis of Euthanasia Requests in France

Estimation and Analysis of Euthanasia Requests in France

Several studies have been released over the last twelve years to estimate the number of euthanasia requests in France. These studies are sometimes quoted in the current debate on the end of life and its legal framework. Thus, the CCNE (National Consultative Ethics Committee) in its notice No. 139 uses as a basis a study conducted in the Jeanne Garnier palliative care centre to justify its about-turn in favour of euthanasia and assisted suicide. In that study, dating from 2014 the initial requests for euthanasia expressed by patients treated in palliative care are estimated at 3%.

The analysis note which we are publishing analyses in detail the 4 studies conducted in France between 2010 and 2022, some of which also distinguish between initial requests for euthanasia and persistent requests, i.e. repeated over time by the patient in person.

INED 2010 study

The oldest study, undertaken by INED was conducted on doctors rather than patients. The main conclusion of the study was that “according to the doctors interviewed, 16% of the deceased, at one moment or other, expressed a wish to accelerate their death, but explicit requests for euthanasia remain extremely rare in France: they concern 1.8 % of deaths, i.e. 44 persons out of a sample of some 2,200 persons subject to a medical decision at their end of life.”

Initial requests for euthanasia expressed by patients in palliative care

The study conducted at the Jeanne Garnier medical centre in 2014

The approach for this study was different. The wishes for anticipated death and explicit requests for euthanasia were counted on the basis of notes recorded by the carers (nurses, psychomotricians, psychologists, therapeutists) in the records of patients admitted in the palliative care centre (81 beds) during the 2010-2011 period. The data were classified under 3 categories, “Euthanasia requests”, “Suicidal tendencies” and “Other death wishes”.

Out of the 2157 patients studied in that palliative care hospital, 9% (195) expressed a wish to die, 3% (61) of which made an initial request for euthanasia, 1% (15) had suicidal tendencies and the remaining 6% (119) other death wishes. These 195 patients were essentially women (65%), the duration of their residence was significantly longer (24 days median) and their consumption of tranquillisers (88% compared with 66%) and antidepressants (55% compared with 36%) was higher than with other residents in the palliative care centre.

Extension and updating of the previous study from 2018

The previous study was updated for the period 2014-2017 with an extension to include the Besançon CHU hospital. Among the authors featured, was Régis Aubry, a member of the CCNE who had voted in support of notice No. 139.

Out of almost double the number of beds (151) than in the study conducted at Jeanne Garnier (81), the initial requests were fewer: 31 compared with 61. If one considers an assumption of a regular rate of occupancy of the beds in palliative care, this represents 0.7% of euthanasia requests among the patients in palliative care.

Persistent requests for euthanasia

The studies also provide an estimation of the persistent requests for euthanasia.

In the study conducted in 2014, among the 61 requests for euthanasia recorded initially by the carers, only 6 (10%) persevered with their requests by repeating their requests for euthanasia.

In total, the persistent requests represent 0.3% of the patients in palliative care. The remainder of the study then focuses on these 6 patients maintaining their request qualitatively only. In the end, only two patients maintained their request for euthanasia until their death.

The 2018 study also provides details of the evolution of their requests (maintained, abandoned, ambivalence). These could vary according to events, personal experience and interactions. […]. The study noted that “The feeling of ambivalence, which is intrinsic to the wish to die, may mask and alter the way the urge to live or die operate.The reaction of the carers and their understanding also affect the repeated expression of the request and the form of rhetoric employed. We noted their variations following interactions with their carers and family members and following events associated with their disease”.

Finally, a recent study conducted with health workers in Burgundy, Franche Comté, and published in 2022 provides more detail of the context surrounding the infrequent requests for euthanasia.

It transpires that:

  • Male patients maintain their requests for euthanasia more than female patients.
  • Craftsmen, tradesmen, company directors are represented twice as often in the reiterated requests.
  • The clinical characteristics do not reveal any significant differences apart from 3 particular cases:
    • There are many more patients whose symptoms deteriorated in recent months, among the requests that disappear than among the persistent requests. This over-representation may indicate that the dynamics of deterioration may influence the initial expression of the request for euthanasia but once that expression is past, the adaptation of palliative care enables the establishment of a stability of symptoms.
    • Painful symptoms are slightly greater for persistent requests than for abandoned requests.
    • Neurological disorders are more represented in the persistent requests than in the abandoned requests.

Conclusion

The studies available show that, among the patients at their end of life, requests for euthanasia remain infrequent. According to the data collected from patients, initial requests for euthanasia may be estimated at between 0.7% and 3% of them. An older study by INED estimated that explicit requests for euthanasia concern 1.8 % of deaths. Persistent requests are even fewer in number, around 0.3% according to the study conducted in 2014. The quality of care provided, the attentiveness of carers, the family and social-economic context… are other influencing factors for such requests and their persistence.

More than ever, the urgency is to provide relief and accompany those at their end of life.

Portugal – Euthanasia: The Portuguese Parliament Have Adopted a Constitutionally Controversial Law

Portugal – Euthanasia: The Portuguese Parliament Have Adopted a Constitutionally Controversial Law

On Friday 9th October 2022, the Portuguese parliament voted for the 3rd time on a law to legalise euthanasia, which has every chance of being referred to the Constitutional Council due to its particularly extensive conditions.

The first bill, tabled in January 2021 under the full Covid pandemic was declared unconstitutional. The second modified bill was adopted on 5th November 2021 before being vetoed by the President of the Republic in November 2021. The bill included in particular a legal inconsistency concerning the qualification of the sickness eligible for euthanasia, sometimes described as “serious” in some articles and as fatal or incurable in others. The bill did not go any further due to the dissolution of Parliament in December 2022.

It is therefore a new bill which has now been tabled and adopted. As in 2021 it is the result of a compromise combining the proposals put forward by the Socialist party, the Left Block (extreme left), PAN, the Animal Rights, the Greens and the Liberal Initiative party.

Several measures are again out of control as identified by several lawyers, such as law professor Teresa de Melo.

The notion of life expectancy threatened in the short term is not mentioned, leaving considerable room for interpretation for the practice of euthanasia. What was previously described as ” intolerable suffering” in the previous bills has changed to “high intensity suffering” which is a clear attenuation of the requirement.

The notion of “terminal sickness” has been modified to “serious sickness”, which objectively expands the range of illnesses which qualify for euthanasia. Moreover, since no psychological evaluation is mandatory, it will not be possible to check whether the patient’s will and consent are “free and enlightened”, especially if the patient is suffering from a mental disorder or is being subjected to external pressures.

It is now up to the President of the Portuguese Republic to determine the constitutionality of these measures, in particular in view of the virtual absence of protection for fragile patients.

[CP] – Citizens’ Convention on the End of Life: Alliance VITA will Take Part Guilelessly

[CP] – Citizens’ Convention on the End of Life: Alliance VITA will Take Part Guilelessly

Whilst the Citizens’ Convention on the end of life is to begin tomorrow, Alliance VITA stands ready to provide its expertise and convictions, with determination and guilelessly.

In the context of the participative process decided by the French President, the 150 citizens appointed by drawing lots will have to answer the following question: “Is the framework for care during the end of life suited to the different situations encountered or should some changes be introduced?”

Claiming its “neutrality” the governance committee of the Convention specifies that the citizens will decide who to consult and how to conclude on the basis of the documentary data provided to them. This documentation uses the phrase “active assistance to die”, considered by the national ethics consultation Committee in its notice No. 139, which is far from insignificant.

The citizens’ convention must submit their findings in March after nine 3-day sessions. However certain factual data which could be relevant to their thinking will not be made available, in particular the report on palliative care requested by the Government Accounting Office, which is scheduled for June 2023.

Whilst claiming “an appeased debate” to which the citizens’ convention would be a guarantee, the powers that be, by deciding – in a difficult sanitary and social context – to reconsider the “end of life framework”, give the impression of having already decided to cancel the prohibition to kill.

Tugdual Derville, the spokesman for Alliance VITA states: “The debate in itself is far from neutral inasmuch as it overturns a founding element of community life. Questioning the factor which links us together in society, the prohibition to kill, immediately poses a threat on certain people. In our “SOS Fin de vie” (SOS End of Life) hotline service, we currently hear people suffering mentally who ask us if we could end their days. We are also concerned to see this debate focussed around the theme of “active assistance to die” whereas there are many other questions to be answered on the subject of the end of life: Where are we going to die? Will we be properly supported? Will there be adequate pain relief? How to fund home care? How to support local carers? All these questions and many others, must not be hidden under the bushel of euthanasia or assisted suicide.”

In the debate which is being launched, Alliance VITA will continue to defend its opposition to euthanasia and assisted suicide and will concentrate its campaign on insisting on better accompaniment for the aged and the end of life:

  • For the enactment of a law to govern old age and autonomy,
  • For palliative care to be made accessible everywhere in France,
  • For the prevention of suicide with absolutely no exceptions,
  • For the prevention of the social death of the aged,
  • For truly effective solidarity between generations.

 

Press contact
contactpresse@alliancevita.org

Surrogacy: The Court of Appeal Confirms the Disconnection of a Commercial Site

Surrogacy: The Court of Appeal Confirms the Disconnection of a Commercial Site

In a ruling given on 24th November, the Court of Appeal confirmed the obligation for the OVH host to disconnect from France a Spanish commercial web site offering  surrogacy services, which are prohibited in France.

The case has been running since June 2016, at which date the association Juristes pour l’enfance ( Lawyers for children) issued a formal order for the host to remove the criminal site. Found guilty, the host appealed and the Versailles Appeal Court has confirmed the decision by the county court.

The OVH company subsequently countered the ruling “confirming the judgement undertaken compelling the web site in question to be made inaccessible in France”, by claiming freedom of speech.

The Court of Appeal confirmed the ruling and ordered the host to make the web site inaccessible inasmuch as it enables French nationals to access a practice which is illicit in France.

As underlined by the “Juristes pour l’enfance” association in a press release: this decision “represents a breach against the impunity enjoyed until now by the surrogacy merchants, who profit from the poverty of foreign women and the suffering of childless French women.”

Alliance VITA who are striving for the worldwide abolition of  surrogacy welcome this decision. It contributes to the awareness of the serious offence caused by the practice of  surrogacy on the rights of women and children.