2024 general elections : What are the plans of the candidates on the end of life and old age?

2024 general elections : What are the plans of the candidates on the end of life and old age?

by | June 28, 2024 | End of life, News

Apart from the presidential majority party who would like to debate the bill on the end of life as a priority issue, the subject is not at the heart of the intentions of the different political parties for the general elections to be held on 30th June and 7th July 2024. As for old age, the issue has been swept under the carpet for these elections.

The dissolution declared by the French President on 9th June put a halt on the end of life bill, for which the public session debates at the National Assembly had started on 27th May. The parliamentary candidates are divided on the importance to be afforded to the issue in their programmes.

A priority for the presidential majority

In the event of victory by the presidential party whose title is now “Ensemble pour la République” (Together for the Republic), Gabriel Attal announced that the text on the end of life, authorising “assistance in dying” would be put back on the agenda of the new Assembly as early as July, before the Olympic Games. When interviewed by France Inter on Monday 24th June, the ex-president of the National Assembly Yaël Braun-Pivet stated that she would again register the text on the end of life as a priority issue, as the text is “impatiently awaited by the people”.

Total absence in the other programmes

Nevertheless, that position is isolated in the debates surrounding the elections. The end of life does not appear in the programme for the “Nouveau Front Populaire”, even though several voices have been heard within the left-wing alliance in favour of a bill for euthanasia or assisted suicide. Fabien Roussel, the national secretary for the Parti Communiste Français (French Communists), has called for resuming the parliamentary debates. The LFI MP Hadrien Clouet, who is standing for re-election, has taken a commitment to resubmit the bill if he is re-elected.

The programmes for Les Républicains (LR) and the Rassemblement National (RN) are silent on the question. Within those parties, the candidates themselves are divided. Certain of them have expressed their will to develop palliative care. What is clear, is that the end of life is not a key issue for this election campaign.

Old age, the forgotten issue for these elections

 In view of the enormous challenge presented by the ageing of the French population and the crisis already being experienced by the old age sector, one might have expected that the issue would be addressed by the different political groups. A law on old age had been announced back in 2018 by Emmanuel Macron and again promised in November 2023 by the then Prime Minister Elisabeth Borne. However, apparently old age is not a popular subject.

On the subject, there are a mere two lines in the programme for the “Nouveau Front Populaire”, who propose to “launch an old age plan by renovating the EHPADs (old people’s homes), by increasing the numbers and training professionals for old age”. The 12-page programme for “Ensemble pour la République” makes no mention of the subject. The “Rassemblement National” (RN) under the heading of health proposes “to reinforce the support for relative-carers” but without saying how.

The election candidates would be well advised to consider the 2024 Ifop/Synerpa survey on old-age and the challenges represented by ageing, published on Monday 24th June. According to that survey, nearly 7 out of 10 French nationals consider that the public authorities have not done enough to improve the situation in EHPADs (69 %). They could also look at the results of the RH & Finances survey published on 14th June by the FNADEPA (National federation of the associations of directors of establishments and services for the elderly).

This identifies a new deterioration of the financial situation of establishments and services for the elderly, irrespective of their public or private status. According to the survey conducted on 1,500 FNADEPA members, 65 % of the ESMS were in deficit in 2023 and 58 % were short of personnel.

In this context, Alliance VITA recalls that, among the 5 priority issues for these elections, the most critical is the urgency to pass a law on solidarity for the elderly and the need to guarantee access to palliative care for all. These questions will not be avoidable by the next government.

PID-A : The shameful launch of a clinical test to bypass the law

PID-A : The shameful launch of a clinical test to bypass the law

by | June 21, 2024 | News

The French ANSM (National agency for medicine safety) has illegally authorised experimentation on a new embryonic selection technique : PID-A. This clinical testing began in March 2021 at the moment when PIDI-A was prohibited by the bioethics law, the prohibition was further confirmed by the law dated August 2021, including at the research stage. The revelation was made this week by the Jerôme Lejeune Foundation through a press release titled “Victory against the slippery slope of the perfect child” In view of its clear illegality, the association had in fact asked the judiciary to cancel this testing. The administrative court in Montreuil has just declared in favour of the Foundation.

What exactly is PID and in particular PID-A ?

Pre-implantation Diagnosis (PID) is a technique for the selection of embryos conceived in vitro. In France, this regulated technique concerns only couples who have a strong probability of transmitting a hereditary disease and giving birth to a child suffering from a particularly serious genetic disease which is recognised as incurable at the time of the diagnosis. It does not concern couples who resort to in-vitro fertilisation (IVF) for infertility reasons.

For several years, and in particular at the moment of the last revision of the bioethics law, there was a strong lobby for extending and liberalising access to PID-A : Pre-implantation Diagnosis  for Aneuploidy (anomalies of the number of chromosomes). PID-A is aimed essentially at the detection in vitro of embryos suffering from trisomy, in particular the most common : trisomy 21 (Down’s syndrome).

What are the ethical stakes ?

The particularity of trisomy is that its appearance is random and unpredictable. It is not hereditary, it is a kind of “accident” which occurs at the moment of fertilisation. As a result, in simple terms, the authorisation of PID-A would entail conducting systematic quality control on all embryos conceived in vitro.

It would concern not only the embryos conceived in the context of a conventional PID but also those of all couples who resort to ART (Assisted Reproductive Technology), in the absence of any medical reason. It therefore represents a change of paradigm which would consider a form of “quality control” for embryos as standard, in the absence of any identified risk, with as its main objective the elimination of those suffering from trisomy.

This would initiate the slippery slope towards PID for everything and for all, under the growing myth of the quest for the “perfect child”, a slippery slope which has already been launched and which is inherent in the very principle of the PID technique. “The next stage will be to hunt down other rare very serious diseases” and “why not to one day be able to offer all couples who so wish to achieve the myth of a healthy child”, according to Agnès Buzyn, the health minister in 2021 when the amendments to authorise PID-A were being debated at the National Assembly.

She was strongly opposed to it and pointed our the obvious danger of eugenics.

Why is there such an offensive for the authorisation of PID-A ?

The logic inherent in the pre-implantation diagnosis techniques is to proceed with embryonic selection, however the technique is far from neutral. When considering the prospect of improving the results of ART or improvement of the selection according to the “quality” of the embryos, escalation is inevitable. First of all, these tests are authorised in order to track very serious diseases. Then less serious ones. Then, simple tendencies….  First one disease is tracked, then others at the same time… seeking to eliminate one risk, then another….  It is offered to those people considered to be “at risk”, then for reasons of “fairness” and “performance” of the techniques, it is made available to all…

The claimed objective by the promoters of the technique is to optimise the chances of pregnancy following IVF. Indeed, for certain reproductive biologists and gynaecological obstetricians, aneuploidy could be a frequent cause for the failure of embryo implantation in the uterus or of miscarriage. Moreover, the promoters of PID-A start from the principle that the detection on a foetus of the presence of trisomy leads systematically to a decision to abort. The statistics of abortions in the event of suspected trisomy tend to support that hypothesis.

In summary, the declared objective is to avoid implanting embryos suffering from trisomy 21 in order to avoid the trauma of abortion and to improve the efficiency of ART cycles, on the understanding that aneuploidy could lead to miscarriage.

The effectiveness of PID-A is disparaged as a means of “avoiding” miscarriage

According to Stéphane Viville, a specialist in reproductive biology and genetics in Strasbourg and founder of the first PID centre in France : “The majority of miscarriages are not due to chromosomal anomalies but to 40,000 other reasons. It may be intrinsic in the embryo, the uterus of the woman, the dialogue between the two, etc. Furthermore, in IVF, there are many “mosaic” embryos, i.e. consisting of normal cells as well as cells with an abnormal number of chromosomes. Now, “These mosaic embryos are capable of self-restoration”. Their elimination in principle following a pre-implantation diagnosis therefore has no sense. Moreover, diagnosis errors are also possible with this type of examination.

What illegal clinical testing has been established ?

Despite the prohibition of PID-A, the ANSM has in fact authorised a clinical test involving couples in an ART sequence. The objective being to verify the validity of the theory defended by the promoters of PID-A, i.e. that it could be a means of reducing the likelihood of miscarriage following IVF and of increasing the number of live births in ART sequences.

The clinical test aimed to compare the number of live births with 700 couples in an ART sequence, where one group would have its embryos conceived in vitro screened through PID-A prior to implantation in the uterus and the other (control group) without screening.

The decision by the judiciary has suspended the test. The ANSM has appealed. In this unprecedented affair, several people suffering from trisomy 21 appeared as witnesses to explain the consequences that this technique would have on their lives, such as Madeleine Maillet, who bore witness alongside her lawyer in a video recorded for Le Figaro, on the reasons which  drove her to fight against this test.

According to Alliance VITA, these techniques which concern in-vitro embryos are very concerning as they lead to a risk of large scale consensual and technical eugenics. The threat of acclimatisation of our nation to such eugenic practices is very real. What is at stake is absolutely fundamental. It is the project of a society behind which there exist fundamental questions : what is a human life and what humanity are we seeking for tomorrow ?

French general election : 5 priority themes in support of life

French general election : 5 priority themes in support of life

by | June 21, 2024 | Bioethics, News, Palliative care, suicide, Surrogacy

The current unstable political situation makes even more important the constant commitment by Alliance VITA, in support of the most vulnerable. That is the reason why the association is defending 5 priority themes in support of life, opposite the candidates and all the parties.

I- Voting for a law for solidarity with the elderly

Whilst the ageing of the population in France is increasing, a law for old age is an urgent social need and a challenge for the dignity of the elderly.

With the considerable increase in life expectancy, the ageing of the population has major consequences. The overall economic equilibria are disrupted (funding of dependence and of the pathologies associated with old age) as well as the social and cultural equilibria (increasing solitude of the very aged, risk of “social death”).

In 25 years, some 5 million French people will be over 85 and the number of dependent elderly people will have almost doubled. A report in 2019 estimated the budgetary needs at 9.2 billion euros per year by 2030. Although announced several times, and ever deferred, a law intended to adapt society to this challenge and to fund the accompaniment of the elderly is more than ever necessary.

The French society for 2050 is being built today. Action is needed now, in order to incorporate the risk of loss of autonomy of the elderly within the very structure of our social policies. It is essential to reinforce the cross-generation links, within the family circle and beyond. It is a matter of justice and social cohesion. The status of carers must be reinforced. Finally, the means allocated to old people’s homes must enable the elderly to live a dignified life up to the end.

II- Guaranteed access to palliative care for all 

Nearly half of the patients who need palliative care are deprived of it : access to palliative care must be provided for all.

The 1999 law stated : “Any sick person whose condition so requires has the right of access to palliative care and accompaniment.” With the other laws concerning the end of life and patients’ rights, a specifically French path is being drawn. It rejects both therapeutic obstinacy and euthanasia, and advocates palliative care. The latter has made considerable progress in recent years; the units dedicated to palliative care are unquestionably havens of relief, fraternity and humanity.

However, such care is unevenly distributed across France : some twenty departments are still without any palliative care units. The ten-year plan put forward by the government promises funding well below the national needs, and with no guarantee of continuity. However, requests to “end it all” are often linked to inadequately treated pain or suffering,  social isolation, as well as the feeling of being useless or a burden on family or on society. It must be stressed that euthanasia and assisted suicide are incompatible with the palliative culture.

More generally, it is our entire sanitary system which is in crisis : access to doctors, emergency services or psychiatric treatment, the quality of life in EHPADs etc. For true fraternity, it is essential to take measures to guarantee for all French people, high quality care, throughout life, and palliative care when the time comes.

III- Defence of the universal prevention of suicide

All suicides are a drama and a failure for society: nobody should be excluded from prevention policies.

France totals some 9,000 suicide deaths each year – one of the highest rates in Europe (13.4 per 100,000 inhabitants in 2017, which is above the average for European nations). Attempted suicides result in some 200,000 visits to A&E per year and 100,000 hospitalisations. Every suicide is more than an “individual” drama : plunging the person’s entourage brutally and violently into mourning, it concerns society as a whole. Suicide prevention remains a major challenge for public health. It should suffer no exceptions.

Legalising assisted suicide and euthanasia as intended in the end of life bill would seriously undermine the prevention policies. It is irresponsible to present suicide as desirable and to suggest that the State should organise it. The experts have warned about the contagion induced by “mimic suicides”, known as the “Werther effect”. More generally, the exclusion of certain categories of patients from suicide prevention, is an unfair discrimination. How can one suggest that certain patients could have no right to such prevention ?

No disease should provide eligibility to assisted suicide. It is the very people who are made vulnerable by physical and mental disease, old age or handicap who on the contrary have the greatest need for protection against the risk of attempting a desperate act. 

IV- Introduction of a policy of welcoming all life

 Demography is a key issue for the future of our society. Adaptation of the social model is an essential condition to favour a welcoming ecosystem for all life.

This begins with a family policy which excludes no families : the re-establishment of a universal family allowance is the first condition for its effectiveness. One must also consider the ever delaying of first pregnancies, and its link to infertility. Infertility is also affected by life-styles and by the exposure to endocrine disruptors : the preservation and if possible restoration of natural fertility requires advanced medical research and improved availability of information for the general public.

Only specific economic and social support can moreover enable women to consider maternity, with attention to reconciliation between long studies or the entry into professional life and parenthood. The vulnerability of couples also calls for specific action. Whereas the rate of abortion is at a record level, we are still waiting for a general policy on the prevention of abortions.

Thanks to advanced detection techniques, the rate of pre-natal exclusion of those suffering from handicap is one of the highest in the world. Furthermore, the UN Committee for Children’s Rights (2016) has called upon France to combat the stigmatisation and prejudices which afflict handicapped children. Support for the acceptance of the handicapped involves a readjustment : the handicap detection policies must be supplemented with better support for parents at the moment of the announcement.

V- Protection of the integrity of the human body

Surrogate motherhood, research on the human embryo and its genetic modification contravene the rights of the person and the principle of respect for the human body.

It is up to France, the nation of human rights, to protect the integrity of the human body.

Our diplomacy must promote the universal abolition of surrogate motherhood, in the name of non-commercialisation of the body of women and the dignity of the child. All surrogate motherhood practices include original maltreatment of the child, as the subject of a commercial contract. Surrogate motherhood is prohibited in France, it must be penalised and not supported. Any State which recognises this form of human trafficking by bowing to the claims of its sponsors, totally contradicts the international efforts to combat the practice.

The same logic prohibits treating the human embryo as an object for experimentation. The creation of chimera embryos mixing human cells and animal embryos is in particular incompatible with the dignity associated with humanity. Clear limits must be established for research and applications which affect the integrity of the human being, such as the genetic modification  of human embryos and the use of CRISPR-Cas9 type techniques. A precautionary principle must be applied, wherever there is any risk of exploiting the human body at whatever stage.

 

C. Karsai Hungary affair : The ECHR has judged that there is no right to assisted suicide

C. Karsai Hungary affair : The ECHR has judged that there is no right to assisted suicide

by | June 14, 2024 | End of life, European legislation, Euthanasia and Suicide, News

The European Court for Human Rights (ECHR) has stated that Hungary is not contravening the European Convention on Human Rights by prohibiting assisted suicide or euthanasia, as well as assistance for conducting it in a foreign state.

The affair, which was judged on 13th June 2024 by the first section of the ECHR concerns the case of Daniel Karsai (the claimant), a lawyer, suffering from LAS (lateral amyotrophic sclerosis) or Lou Gehrig’s disease. Mr. Karsai applied for permission to end his days before his suffering became unbearable. He deplored the impossibility of doing so in Hungary even in the case of  a terminal disease causing existential suffering. It is also prohibited for any person to assist him to obtain such death abroad.

In view of the advanced state of the disease, the case was afforded priority once the claim was submitted in August 2023.

The claimant alleged that the prohibition against assisted suicide was in violation of article 8 of the European Convention on Human Rights (right of privacy and family life) and article 14 relative to the prohibition of discrimination. He claimed he was being discriminated against compared with those in a terminal phase who could ask for their treatments to be curtailed.

Furthermore, he complained that his disease would force him to be imprisoned in his body whereas he was fully conscious, which could be applicable to article 3 of the Convention which prohibits inhuman and degrading treatments. He also claimed an infringement of article 9 (freedom of thought, conscience and religion) insofar as the possibility of “dying with dignity” was part of his religious and philosophical beliefs.

In its judgement, the Court stated from the beginning that article 2 (Right to life) of the European Convention for Human Rights does not prevent the authorities of a State from legalising assistance for suicide providing it establishes adequate measures to prevent abuse. However, the legalisation of assistance in dying entails major social consequences as well as risks of abuse and errors of appreciation. The provision of high quality palliative care, including effective pain relief, are essential conditions for ensuring a dignified end of life.

Under the circumstances of the present case, the Court considered that the affair raised sensitive moral, ethical and political questions for which the national authorities were best placed for evaluating the priorities for the use of resources and social needs, in particular concerning the provision of palliative care and appropriate means of relief for patients in the same situation such as palliative sedation.

Karsai did not deny that he had access to palliative care but that if he was offered terminal sedation for relief, he would lose what little autonomy he still possessed. Whilst recognising the legitimacy of his personal choice, the judges concluded that it could not under any circumstances oblige the Hungarian authorities to provide assisted suicide or euthanasia.

Furthermore, they judged that there was nothing unreasonable in the fact that the prohibition against assisted suicide should apply also to those committed abroad, arguing that it would lead to the creation of an exception to Hungarian criminal law.

Non violation of articles 8 and 14 of the European Convention for Human Rights

In view of these facts and of the broad discretionary powers of the State on the subject, the Court judged that the prohibition against assisted suicide or euthanasia was not disproportionate and that there was no violation against article 8.

Concerning article 14, the Court underlined that refusing or requesting the curtailing of a medical treatment was not the same situation as assisted suicide. It concerns procedures which are widely recognised in the medical profession and also registered in the Oviedo convention on biomedicine. The difference in treatment is therefore justified and does not constitute a violation of article 14 together with article 8 of the Convention.

Finally, unanimously, the references to articles 3 and 9 were rejected as they were clearly unfounded.

“No right for assisted suicide and euthanasia”, but ambiguities remain

The judgement was adopted by an overwhelming majority of six votes to one. The claimant could however appeal to the Grand Chamber.

The judgement recalls that a State cannot be obliged to legislate on assisted suicide or euthanasia. Inasmuch as the European Court recognises a wide freedom of choice for States to establish means for the protection and dignified accompaniment of people until death.

Nevertheless the judges caused some ambiguity when they stated that “Nevertheless, the Convention must be interpreted and applied in the light of current conditions. It is therefore necessary to monitor the need for adequate legal measures, taking into account the evolution of European societies and international standards in terms of medical ethics on the subject”. They refer to a few member states of the European Council which have legalised euthanasia or assisted suicide in recent years.

By failing to declare a position on the question of the “right to life” which appears in article 2 of the Convention, the Court neither condemns nor approves legalisation as such of these practices. This abusive interpretation by the Court of the right to life has been challenged by judge Wojtyczek.

He underlines that, “The convention calls for a strictly literal interpretation and excludes the insertion of additional exceptions by dynamic interpretation.” He recalls that the judgement indicates in paragraph 141 that “It is appropriate, in the context of the examination of a possible violation of article 8, to refer to article 2 of the Convention, which creates for the authorities a duty for the protection of the most vulnerable, even against actions by which they endanger their own lives.” Indicating that such an obligation incorporates the protection against assisted suicide and euthanasia.

French general election : 5 priority themes in support of life

End of life : Moving on to the real priorities!

by | June 10, 2024 | End of life, Press Releases

In the aftermath of the European election results, Emmanuel Macron announced the dissolution of the French National Assembly. This has resulted in the interruption of all the legislative work in progress including the debate on the end of life bill.

Introduced by the bill under the deceitful expression “assistance in dying”, assisted suicide and euthanasia were adopted by the MPs present for the intermediate votes. The pressure by their promoters will not go away with the ending of the term.

According to Alliance VITA, vigilance is therefore key, especially as the debates have shown what the association has been denouncing for years : no framework can ever withstand the lifting of the prohibition against killing. In two weeks of discussions – and against the will of the government which claimed to insist on the “balanced nature” of its initial text – several safeguards have already been breached, including the temporal aspect of the threatened life expectancy in order to gain access to the so-called “assistance in dying”.

According to Tugdual Derville, the spokesman for Alliance VITA : “Assisted suicide and euthanasia are in fact unmanageable: nobody can be unaware that lifting the prohibition against killing which is always claimed to be partial leads inevitably to an uncontrollable situation; the risk in kindling such a fire, is the rapid exposure to a backfire. As already experienced by the current government.”

Alliance VITA was moreover quite right in denouncing the exploitation of palliative care as an excipient for euthanasia and assisted suicide. Mind that it does not fall collateral victim to the dropping of the bill : the priority for the coming government must be to deploy ambitious means such that its access can be guaranteed for all who need it, nationwide. It is a question of justice and social equity.

The examination of the text by the MPs revealed the extent to which the debate could be disconnected from the priorities of the people, such as the cost of living, security and the health system. The French people in fact are hoping for the resolution of the crises affecting the health system: crisis of public hospitals and retirement homes, medical wildernesses, difficulty of access to care.

Even more they expect the next government, whichever it might be, to have a long-term vision and that it deals with the major socio-sanitary challenges such as ageing. Moreover, since 2017, we are still waiting for a law for old age to meet the major challenge of dependence.

More than ever, Alliance VITA therefore remains mobilised against euthanasia and assisted suicide, for universal access to palliative care and for the finalisation of a law for “old age”.