Palliative Care : Beyond Good Intentions, What Are the Means?

Palliative Care : Beyond Good Intentions, What Are the Means?

Alliance VITA notes the ambitions stated in the report for a French model for palliative care, renamed accompaniment care. This change in terminology should not be allowed to mask the reality. The true challenge today, is to provide equal access to palliative care for all and everywhere in France whereas according to the French Court of Auditors, only one in two of those in need are able to obtain access.

The guarantee for access to palliative care is a prerequisite to any possible modification to end of life accompaniment. It should be remembered that this right was established through the 1999 law.

The overall care for patients and their families, the development and awareness of the palliative culture, the will to further involve society in end-of-life accompaniment, are essential and must be supported.

However, there remains the question of the means required in order to achieve such ambitions. There are reasons for doubt since the PLFSS (projet de loi de financement de la Sécurité Sociale – Social Security funding bill) was adopted without any additional financial commitment being made for palliative care. Additionally, according to the latest report by the Court of Auditors, the yearly budget for palliative care is around 1.5 billion Euros. However, the overall budget for the current 2021-2024 plan, i.e. 171 million Euros, represents a yearly increase of 2.85%, which is less than the rate of inflation (about 4% on average since January 2021).

“This text looks like a declaration of intent whereas we are at the moment for committing to additional means. Remember that we are experiencing a multiform crisis in the French health system, which is close to implosion. In such a context, we are more than circumspect at the absence of any financial and human costings whereas the Government intends in February to table a bill covering both palliative care and the claimed “assistance in dying”.

Euthanasia and assisted suicide which are hidden behind this expression cannot in any way be considered as any form of care. We are calling for material means for palliative care to be truly accessible for all and not to be exploited as an alibi for lifting the prohibition to kill: the precious principle behind the medical code of ethics, intended to protect all patients, remains the key to our trust in the French health system.” According to Tugdual Derville, the spokesman for Alliance VITA.

Abortion in the French Constitution : Yet Another Political Gesticulation Beyond the Concerns of French Women

Abortion in the French Constitution : Yet Another Political Gesticulation Beyond the Concerns of French Women

The bill to register abortion in the French Constitution is to be tabled tomorrow during a cabinet meeting. Whereas the availability of abortion is in no way threatened, its registration in the French Constitution is totally disconnected from the reality on the ground. The present social urgencies are quite different.

In 2022 the rate of abortions reached its highest level in France since 1990.

The claimed “irreversible freedom” is a delusion. It does not address the true needs of many women who seek protection from the social and economic pressures which push them towards abortion. How can one be satisfied by the fact that women on the lowest incomes more frequently resort to abortion than those who are wealthier (studies by Drees – Direction de la Recherche, des Etudes, de l’Evaluation et des Statistiques – Directorate for Research, Studies, Evaluations and Statistics)? How can one ignore the fact that they may also be subjected to violence?

For 40 % of the 201,000 women affected each year by domestic violence, it began during their first pregnancy. At the same time, procreative standards are tending to rigidify at the cost of women’s freedom: they should not be too young, nor too old, be in a stable relationship with a stable job, adequate income, etc.

It is not so much abortion which is under threat today in France but rather the possibility for those women who so choose to complete their pregnancy. For that, it is essential that they be provided with comprehensive and balanced information, which is not currently the case.

The consecration of a “freedom to resort to abortion” in the French Constitution additionally risks to further undermine the fundamental principles such as the freedom of conscience, and in particular the conscience clause of health workers and the freedom of expression which is already under threat on the subject.

“Let us not be naive: this highly symbolic bill is in no way the result of a request by French women, nor is it in any way in line with their needs; it is a blatant political gesticulation beyond their concerns. We deserve better than to be treated as adjustment variables for partisan posturing. Alliance VITA has for many years been calling for a study on the causes, the conditions and the consequences of abortion. That should be the priority for our politicians. The urgency is for prevention not for adding abortion rights to the constitution.” According to Caroline Roux, the Deputy General Manager of Alliance VITA.

 

 

 

Is death Programmable?

Is death Programmable?

That is the question facing our society, whilst some people are dreaming of being able to control the day and the circumstances of their death, via euthanasia or assisted suicide. In the context of a series of opinion polls, Pierre Jova, a journalist, travelled to Belgium on several occasions to witness the “End of Life” militant forum between December 2022 and April 2023, i.e. at the same time as the Citizens’ Convention on the end of life was organised in France.

He has released a short essay on the subject published by “Le Seuil” under their “Libelle” collection, whose purpose is to alert, inform, and challenge. His ambition was to provide the readers with “facts to enlighten their thinking” on the touchy subject of the end of life. The publication devotes much space to first-hand accounts by family members of euthanised people, carers, euthanasia supporters. His account is based essentially on examples in Belgium, but it includes a few notable cases in Switzerland and Canada.

Euthanasia in Belgium: Consensus or taboo?

The law on euthanasia would, we are told, enjoy a consensus, as our Belgian neighbours boast of their ability to compromise. But in fact, the institutional and linguistic complexity in Belgium, combined with a less developed culture for debate compared with France, tends to suggest that this pseudo unanimity could in fact be more of a collective taboo. Certain figures are matter for concern… Thus, on 13th February 2014, euthanasia for minors was adopted by the Chamber of Representatives following a mere two half-days of debate; the splitting of Bruxelles-Hal-Vilvorde between Flemish and French-speakers, on the other hand was debated over for ten years!

It is also worth remembering that euthanasia is declared by doctors as “death from natural causes”, thus masking the obvious specific nature of medically administered death. Since it is legal, it is quite complicated to express any doubt, to challenge certain practices, or even to suggest that the consequent grief may be particularly difficult to bear: “Beyond its normalisation, euthanasia leaves behind indelible scars in families. Some of them put a cap on their deep discomfort, precisely due to the prevalent discourse”, according to Pierre Jova. The law does not include any obligation to consult with the entourage, which in some cases can lead to quite dramatic situations: for instance, the man who learned that his 88-year-old mother was euthanised in her care home without her family or her carers being informed…

The Belgian example, a wake-up call for France 

Very quickly, mental suffering was added to physical pain as a criterion for qualifying for euthanasia. Pierre Jova draws attention to the notion, often mentioned, of “incurability”: can one truly abandon all hope of recovery in the case of an existential discomfort, or mental suffering? He quotes a notable example of a suffering person, who managed to regain a will to live thanks to therapy, but who remained fragile, and was “trapped” by a previous decision to resort to euthanasia, and who was unable to go back on the decision since a date had been allocated. “Freedom is illusory when the spirit is captive of a morbid process. » 

The argument, often put forward, of strict control of the practice of euthanasia can also be seriously challenged since it is well known that euthanasia is declared subsequent to the supervisory commission, which itself is largely comprised of pro-euthanasia militants and doctors who practice euthanasia. However, if there were ever an irreversible “medical” act, it would indeed be euthanasia! A great number of euthanasia are in fact performed clandestinely, and pass through the net…

Help to die or help to live? 

Euthanasia, which was adopted in Belgium on the same day as a law establishing palliative care as a right, is however the result of a completely opposite logic. What greater paternalistic medical act indeed than the administration of death to one’s patient? In March 2023, a Canadian from Quebec by the name of Robert Corbeil testified: he is not eligible for palliative care at home but however, a nurse informed him that he could have medical assistance in dying (the term used in Canada for euthanasia)!

In France, the debate on euthanasia is taking place at the same time as the debate … on pensions! Militants from the left-wing LFI party are against the idea of a public discussion on euthanasia, arguing: “Before their end of life, surely people are more interested in enjoying a happy retirement and being cared for as and when required in a local state hospital?”

This prospect is in fact corroborated by what Pierre Jova observed through several conversations, i.e. the omnipresence of social motives in requests for euthanasia. Through fear of being a financial burden on family members, or even pressure applied by heirs: for instance, a man who obtained validation from a Swiss doctor for assisted suicide due to “A significantly restricted quality of life caused by macular degeneration due to old age”, but especially who was widowed and penniless, living in a house which he did not own. The man’s brother, dumbfounded, suggested: “I suppose he had taken a commitment with his wife’s children to leave the house.”

Instead of programming death, it would be better to put fraternity back to the heart of our societies 

In Belgium, it has become quite common to have someone in the family who has been euthanised. Amélie, who lives in Liège, could not hide her emotion from the author when showing him the announcement card which she received in her letter-box: Her step-sister and step-brother were announcing the date of their forthcoming euthanasia. But setting the day for formalising farewells is not a solution, according to Pierre Jova, for whom “no amount of play-acting can replace the ordeal of truth in unpredictability. He proposes an ethic of fraternity, which would place relationship and the link between generations at the very heart of our society.

The author concludes by recalling that dignity “must not be confused with appearances” and it is up to us to make it clear to the most vulnerable through “the energy devoted to reminding them every day of the infinite value of their presence”.

For further reading, refer to all our publications on the end of life.

What if Euthanasia Were a Social Regression?

What if Euthanasia Were a Social Regression?

What if euthanasia were a social regression?
Part I

The legalisation of euthanasia or assisted suicide could hide a form of social regression. That is the disturbing message in a recently published book of well substantiated arguments. Written jointly by a doctor and a clinical psychologist, its title is: Does euthanasia constitute social progress? The authors describe their experience, working in palliative care for many years in the Seine Saint Denis (93) department.

On the back cover, there is a central question which is often glossed over during debates and avoided by those who support legalisation: “What project do we collectively want for the most vulnerable?”

Deconstructing the slogan “it constitutes social progress”, the authors denounce a widely accepted debate whose aim is essentially individualist. Against a backdrop of claims for euthanasia, there is a narrow conception of freedom, inherent in the maximum number of individual choices which society is committed to provide. Behind the smooth vision of freedom and voluntary, “enlightened” choice, as described by the promoters of medically induced death, there are many questions to be answered:

How can one achieve freedom of consent under the burden of suffering: if it is inadequately relieved? If the patient is alone, deprived of prospects and support?

How can the medical teams take into account the psychological and relational aspects of the disease, beyond the technical aspects?

And crucially nowadays, do the teams have the means to provide an accompaniment which faithfully complies with their Hippocratic oath? The current crisis in the French health system throws a sombre perspective on that point.

In their introduction, the authors question the notion of progress and note that it often stems from a kind of scientism which operates as a “pseudo-religion”: we blindly follow a progress which would inevitably lead us to a life, and a society, freed of all evil. However, history during the 20th century has disproved these enchanting dreams. As they state in their introduction:

“From the very outset of the Nuremberg trials, a doubt appeared regarding the morality of science…one can no longer do without any moral reflection on the proposed scientific experimentations or therapies.”

Indeed, euthanasia has a link with technical advances. The authors recall that certain neonatologist doctors have called for the legalisation of euthanasia for excessively premature births saying “we must be able to undo what we have done”. Thus, euthanasia is often the other face of unreasonable obstinacy, the act which would remove the patient after treatment, not as a person, but as a case.

Behind the calls for euthanasia, the fears of the modern individual: suffering and loss of dignity

In the second part of the book, the authors confront two of the reasons frequently put forward for the legalisation of medically administered death: suffering and the loss of dignity. Denouncing in passing the manipulation of certain opinion polls, and based on their professional experience, they question the representation claimed for the cases of patients for whom nothing more could be done. Based on their shared experience, they recall that “suffering, like happiness, joy, pain and sadness are the constituents of human experience. It is hard to see how the end of life would operate any differently, in the most ordinary way, from what precedes it.”

Moreover, quoting the theory of double effect, the authors state that French law already allows the relief of physical suffering up to unconsciousness, when it is necessary. However, all suffering has an existential dimension which may also signify the refusal to abandon the fight against the disease, to resign oneself to die. Quoting two young men suffering from terminal phase cancer, the authors state that their refusal to let themselves be “relieved” could be “a subjective accomplishment … Suffering often described as rebellious may sometimes be a form of resistance.”

The measurement of suffering, the establishment of a limit beyond which it would be admissible to trigger a medically administered death would be a nonsense:

” The nations surrounding us give us an insight of the impossibility of drawing a line and the reasons for requesting euthanasia increasingly look like an inventory of all the mental or physical pathologies and ailments which can be experienced by human beings.”

Additionally, the book underlines the difficulty of the double or even duplicitous message, on assisted suicide: “How can one legitimise access to death without at the same time vindicating suicide?” What will happen to the call to assist any person in danger? The book recalls: “The subject is far from trivial: every year, between 85,000 and 90,000 people are admitted into hospital following an attempted suicide.”

Pain can be relieved, suffering has a complex existential dimension which makes the legalisation of euthanasia problematic. Yet again, the authors focus on the living conditions and care which may lead to requests to end it all. “Several cases in Canada show that euthanasia can also be a solution to social poverty.”

Listening to the call for “Dying with dignity”, Isabelle Marin and Sara Piazza underline an important point. Under the term of dignity, is the representation “of a being established as an active and valid, independent and autonomous individual.” This is the very heart of the question of the acceptance of dependence, vulnerability, finiteness, which no living being can claim to avoid without deluding themselves. With a streak of humour, the authors recall that

For some people, dependence and vulnerability may be tolerated: a human being which has to be fed and changed, who dribbles and soils himself may be a source of admiration and wonder, if he is under 18 months old.”

The question of consideration is central, for all and for society as a whole. The “Espace Ethique Île-de-France (Ile de France Ethics Space)” incidentally states that “questioning the value and dignity of the existence of a person further weakens them, and compromises any investment by family members and carers…”.

Finally, the authors tackle the delicate question of death throes. Considered in widespread representations as a time of unnecessary suffering, they recall that, inasmuch as means are available to relieve pain and anxiety, “Death throes are not pathological as such but simply bear witness to the time which certain people may take to die.”

The lack of control of this time by family members and carers “sometimes signifies the very subjective experience of the person, even if unconscious.” Even at the very end of life, it is right that the person should remain subject to their life and escape the control, or even the hold, of others. The prohibition from killing is found to be truly protective.

What if euthanasia were a social regression?
Part II

Behind the mask of autonomy and equality, is the stranglehold of “biopower”.

The wish for total control, although illusory, is at work in a large number of the claims for the legalisation of euthanasia.

A major contradiction weakens the claims by supporters of the legalisation of euthanasia. They claim to be taking back control of their life, and their death. They reject the medical power over patients, whilst at the same time demanding that the decision making and actions should be undertaken by representatives of the medical profession.

Indeed, it is for doctors to examine the cases, to prescribe, and in euthanasia, to administer the lethal product. In the current state of the law, doctors have no right over the death of their patients. But this would be introduced in the event of legalisation: “The illusion of being within the scope of medicine and doctors to decide on one’s own death goes against the deciding power, in fine, of the doctor”. This doctor’s power is just as real in the context of assisted suicide.”

At one time or another, the request is indeed made to be assisted medically (for the ability to produce a substance) which involves validation (authorisation) and a prescription”. Thus, contrary to appearances or to the discussion on euthanasia as a taking back of control by the patient from the power of medicine, legalisation on the contrary signs the submission of self to an increased medical power.

The book then examines the notion of autonomy from other angles than the patient/doctor relationship. In their practices, they regularly hear, not so many requests for euthanasia, but rather the expression of a feeling of uselessness, isolation, fear of being a burden on next of kin, family members, carers etc. Orders, whether direct or insidious, economic or financial pressures are already present.

What will happen if administered death is legalised? According to Claire Fourcade, the president of SFAP (Société Française d’Accompagnement et de Soins Palliatifs – French Society for Accompaniment and Palliative Care), “nobody will be obliged to do it, but everyone will have to consider it”. How can one ask for better living conditions, how can one mobilise energies for the accompaniment of the aged, if an “escape” exists, and even worse, if it is proposed and organised by society?”

As for the claims for legalisation to avoid that only the “wealthy”, can go abroad, to access euthanasia, the authors put forward a position which is “radically different”. It is to ensure equal access for all to palliative care, and to care in general. In the growing crisis confronting the French health system today, there is a major risk of a breakdown of the trust between carers and patients, the latter may wonder whether the ending of treatments is linked to financial considerations. The alternative is not more freedom and equality versus less currently, but a “false promise of emancipation on the one hand versus a true risk of injunction on the other”.

Behind the well-established discourse in support of medically administered death, behind the promotion of autonomy, lies the figure of the performing individual, useful to itself or to the economy which is upheld as a model.

Euthanasia is not a “treatment like any other”, nor the “ultimate treatment”. In fact what does the lethal act actually treat? In a chapter devoted to their experience in palliative care, the authors explain the palliative approach in parallel with curative medicine: a more general approach of the persona, a multidisciplinary practice whereby the entire care team is mobilised. To claim that euthanasia is a treatment, is to consider treatment as a consumable – the very last – which can be requested individually. However, treatment is “a relational affair, a therapeutic alliance “. In the current context “to propose at the same time both palliative care and euthanasia is pure hypocrisy: indeed, the inequality regarding treatment is ever increasing and the question of access to treatment is becoming of increasing concern”.

In a culture where economics dominate, the market is becoming the regulating factor. Where there is offer there is demand. The offer of euthanasia will create the demand. It must be remembered that studies on the question of requests to end it all have revealed a very low rate with end of life patients.

In conclusion, the question of the end of life is therefore eminently political: “Should a supportive society propose a way out for its citizens or do everything possible to improve their life”. Can one ask health workers to go against a fundamental prohibition, that of killing? What will our society become if the message to the most vulnerable is that a way out is possible, or even best?

In their conclusion, the authors state: “We are hoping for a social proposal where the question is not of a dignified death, but rather a dignified life”.

 

Rally against assisted suicide

Rally against assisted suicide

Rally against assisted suicide

Always rescue, never “help” to die!

By the end of the year, the French government intends to table a bill aimed at legalising assisted suicide.

On Saturday 2nd December, Alliance VITA sounded a cry all over France to protest against the legalisation of assisted suicide.

In some fifty towns in France, thousands of people wearing masks and clasping their faces with their hands, mimicking the famous “Scream” painted by Edward Munch in 1893. Every suicide is a tragedy which affects many people and which constitutes a failure for our society.

Legalising assisted suicide is akin to designating certain people as eligible to suicide and undermines any policy for suicide prevention.

In opposition to this dangerous bill, five cries are sounding all over France:

  • A CRY OF TERROR at the very thought that the most vulnerable should thus be excluded from suicide prevention, as if their life was no longer worth living.
  • A CRY OF ANGER with those already suffering from bereavement following the suicide of a family member and who know and have to endure the violence of such a tragedy.
  • A CRY OF REBELLION at the involvement being demanded of carers for the validation of suicide requests, the provision of lethal substances and participation in their administration.
  • A WARNING CRY at the risk of holding a lethal poison at home.
  • AN ALERT CRY against the impact of the legalisation of suicide for people suffering from depression.

At a time when the health system in France is confronting a major crisis affecting the entire population, and when a law on old age is still awaited to take into account the ageing of the population, how can one understand this time-table which aims to table a bill on assisted suicide before the end of the year?

Alliance VITA is calling for action to back a society which takes care of the most vulnerable:

  • By reasserting their refusal of euthanasia and assisted suicide as well as therapeutic obstinacy;
  • By calling for guaranteed access to palliative care all over France.