Claire Anne Brule

Ten year Strategy on Palliative Care : Disappointment and Concern

by Claire Anne Brule | April 6, 2024 | Palliative care, Press Releases

Ten year strategy on palliative care: Disappointment and concern

1.1 billion euros over 10 years for palliative care, such was the amount announced by the minister for Labour, Health and Solidarity in an interview for Le Monde.

Catherine Vautrin indicated that “The Social Security funds currently committed to palliative care total 1.6 billion euros per year.” A linear increase from 1.6 to 2.7 billion euros over 10 years represents a yearly increase of a mere 6%. Considering that inflation reduces the positive impact of this increase, it is difficult to see how the real needs of the population could be covered by 2034. According to the minister herself, 50% of French people still do not have access to such care.

How can one claim that 235 extra beds in 2025 will make any significant difference whereas hundreds of thousands of French patients who have the need have no access to palliative care? On the other hand, if the end-of-life bill is adopted, they will have access from 2025 to “assistance in dying”. There is a major risk that euthanasia and assisted suicide will be pushed onto patients due to the lack of access to the necessary care. This reality is difficult to reconcile with the aim presented by the government that the first thing which will be proposed to patients, “will be palliative care”.

As for the accompaniment care which is intended as a broadening extension of palliative care, it in fact corresponds to the definition given by the WHO for … palliative care. There is every reason for concern at this permanent will to change words.

There is also good reason to wonder about the final purpose of these accompaniment establishments for which the minister herself states that although their prime purpose will not to be to conduct “assistance in dying”, “we shall see according to the results of experimentation“.

Faced with the needs of French patients, the government has shunned away from making the ambitious choices which would provide equal access for all to palliative care. Quite the opposite, they have chosen to speed up the establishment of administered death. With the health system in crisis and in a strained economic and budgetary context, this choice is liable to have serious consequences for the most vulnerable members of society.

Alliance VITA is calling for rejection of this project which undermines national solidarity and for everything possible to be done in order to ensure that the French health system can provide proper care for all patients who need it.

End of life Law : Can One Ignore Economic Pressures ?

by Claire Anne Brule | April 5, 2024 | Euthanasia and Suicide

End of life law : Can one ignore economic pressures ?

The debate on the End of life law includes economic aspects which deserve explanation to study all these angles.

Support for palliative care

One of the strong commitments by Emmanuel Macron in his speech announcing the end of life bill included palliative care: “I believe that a unanimously recommended solution should now be rigorously implemented. The Claeys-Leonetti law must be better applied, as has also been very 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 renovate our policy on the accompaniment of bereavement“. The ten-year plan which was scheduled for December 2023 has not yet been released. It is therefore difficult to comment on, but a few elements are already available.

Palliative care represents, in terms of public expenditure, a sum of around 1.5 billion euros. This estimate is available in the report by the Government Accounting Office published last year. By comparison, the yearly budget for Social Security has been set in the 2024 Social Security funding bill (PLFSS) 2024 at 640 billion euros. Palliative care therefore represents a mere 0.25% of the overall budget.

In a previous analysis, we suggested an evaluation of the allocations in the previous plan: they were hardly enough to cover the current rate of inflation. Concerning 2024, the Minister at the time had mentioned during a session at the National Assembly, an allocation of “an additional 20 million euros to launch the establishment of a palliative care network, in line with the instruction given to the ARS (regional health agencies). This was one of the first building blocks for the development of palliative care“. The inadequacy of the current funds is well known in the world of carers and political decision makers: At least half of patients who need palliative care do not have access to it.

Concerning the future ten-year plan, its publication has been delayed since December. Recently, a figure of an additional billion by 2034 has been circulating, without any details of the rate and the sums allotted. A linear increase of 1.5 to 2.5 billion euros over ten years would represent an annual increase of 5.2%. If one considers that inflation diminishes the positive impact of that increase, it is difficult to see how the true needs of patients in France could be covered between now and 2034.

As has been underlined by the French Society for Accompaniment and Palliative Care (SFAP), such needs will probably increase with the aging of the population.

However, the CCNE (National Consultative Ethics Committee) itself, in its Notice 139 giving the green light for a form of administered death, insisted on the need to develop palliative care along two paths:

The establishment of palliative care among the priority policies for public health.
Ensuring the effective development of a university course (ideally interdisciplinary) devoted to palliative care with the appointment of an academic in all medical schools.

When interviewed directly on this point by the La Vie magazine on 3^rd April, Catherine Vautrin, the minister, speaks of a “strong commitment” but gives no figures or commitment in the very unfavourable budgetary context this year. For 2023, the budgetary deficit, predicted at 4.9% by the government, reached 5.5% according to the official INSEE figures, i.e. 154 billion euros.

There is a major risk that an administered death procedure will be instigated at a time when the deficit in access to care is on the increase.

The budgetary impact of administered death

Without being at the centre of the debate, the question of budgetary savings has already been raised. One of the supporters of ADMD (assistance for the right to die with dignity), the philosopher André Comte Sponville, mentioned it in his presentation in favour of euthanasia. Alliance VITA also raised and considered questionable the constant support afforded by the private health insurance companies for the euthanasia project.

The risk is far from negligible for a serious conflict of interest between an organisation which has to balance its accounts and the needs of patients to be treated and cared for up to their end of life.

In Canada, the official Parliament Budget Director’s Office has published a report on euthanasia (referred to as Medical Assistance in Dying). Its conclusion evaluated budgetary savings.

Apart from the inevitable errors of such types of calculations (a detailed analysis is suggested by Alliance VITA here), it is the very approach itself which is questionable. What social culture is promoted when calculating the national profit through the anticipated death of the sick or people at their end of life?

Partisans of euthanasia often present their claim as a step forward for the autonomy of each individual. The current budgetary difficulties should on the contrary act as a wake-up call against the real pressures affecting the health system and its users, the patients, if assisted suicide and euthanasia are legalised.

Progestogens, a New Public Health Scandal ?

by Claire Anne Brule | April 5, 2024 | Health

At the end of March 2024, the administrative court in Montreuil registered two claims aimed at challenging the responsibility of the State, through the French national medicine agency (ANSM), for the delay in providing information to prescribers as well as to patients on the risk of developing meningioma when taking progestogens.

Currently, women are claiming compensation for the harm suffered. Other claims are to follow. The lawyer defending their claim has stated that he is holding 450 files concerning women who have taken Androcur or other progestogens, Luteran and Lutenyl. Some 50 individual judicial investigations have been ordered, of which the 20 already completed have all established the link of cause and effect between the taking of such medicines and the appearance of such meningioma. AMAVEA, an association in support of the victims of meningioma was launched in 2020.

Between 2019 and 2020, successive epidemiological studies have shown that the risk increases according to the dose received, for three progestogens (Androcur, Lutenyl, Luteran and their generics). In a statement dated January 2023, the national agency for the safety of medicines and health products (ANSM) indicated that in the context of reinforced monitoring following these studies, cases of meningioma occurring during treatments using other progestogens have also been observed. A “class” effect for progestogens on the risk of meningioma can therefore not be excluded.

What is meningioma?

Meningioma designates a tumour of the meninges, the membranes surrounding the brain and spinal chord. It therefore affects the brain but can also form in the spine. The warning signs of meningioma can be quite different according to its size and location. The most frequent symptoms are as follows (non exhaustive list): frequent headaches, hearing problems, dizziness, memory loss, speech impediment, weakness, paralysis, impaired vision, loss of the sense of smell, convulsions, nausea etc. They are difficult to treat, sometimes requiring complicated surgery and extended convalescence.

The disease can seriously disrupt the lives of sufferers. The meningioma may be discovered during a scan or MRI performed following various symptoms, such as headaches, or because some brain dysfunctions have already been observed (epileptic fits, neurological deficiency, confusion etc.). the treatment is surgical, sometimes combined with radiotherapy. Recurrence is not unusual.

What is the purpose of such treatments?

Progestogens are medicines sometimes prescribed beyond their marketing authorisation (AMM) for various gynaecological pathologies (endometriosis, fibroma, particularly long and/or abundant periods, cycle disorders), in substitute hormonal treatments (including for menopause), but also in obstetrics (sterility due to luteal phase deficiency, repeated abortions) or even in the “gender transition” phase.

According to some reports, people have been using this treatment for several years, even decades. However, the over-risk of meningioma, recognised since the 2010s, increases in proportion with the dose and the duration of treatment with cyproterone acetate.

Androcur (cyproterone acetate.)

This medicine contains a derivative of progesterone. It has an antihormonal action (anti-androgenic): it opposes the action of androgenous hormones (essentially testosterone) and therefore inhibits the effects of male sexual hormones. That is why it is used outside AMM in “gender transition” processes by men who wish to reduce their physical masculine sexual characteristics (pilosity, muscular mass etc.) and to enhance their secondary feminine sexual characteristics (breast size).

In men, its action slows the growth of prostate cells. It is therefore recommended in cases of prostate cancer.

In women, androgenous hormones are present in small quantities and are involved in pilosity disorders and in cases of excess sebum. This treatment is used in severe cases of acne and hirsutism (excessive pilosity)

Lutenyl and its generics (nomegestrol) and Luteran and its generics (chlormadinone acetate)

These are derivatives of progesterone. They are used in certain invalidating gynaecological diseases such as endometriosis, very abundant, irregular and extended periods, whether or not linked to fibroma. These medicines are sometimes prescribed outside AMM as a contraceptive.

The risks have been known since long ago

The identification of the risk of encouraging the appearance of meningioma is not recent. The first pharmacovigilance alert dates back to 2004. As early as 2007, a study on Androcur already identified the risk. It was clearly established and made public by the ANSM in 2018 through a study involving 4,000,000 women. That same year, moving witness accounts by women were emerging.

In 2019, the increased risk of developing intracranial tumours during pregnancy in women having previously been treated with Androcur, well after ending the treatment, was also revealed. In fact, in cases where a woman having been under treatment develops an unidentified or undetected meningioma, the pregnancy period becomes singularly risky since quite naturally, the body then produces a very large amount of progesterone, which triggers a sudden increase in size of the meningioma.

In a study conducted on 287 women, 56% had been treated with Androcur for acne or contraception, for an average exposure duration of 15 years. It is also stated that the first diagnoses of meningioma date back to 1995.

The recommendations accompanying the prescriptions have evolved since 2018. Firstly, professionals should not prescribe or should end the treatment in the event of appearance of meningioma. Then, in 2020, MRI screening was introduced at the start and in the course of treatment.

According to the president of the AMAVEA association, Emmanuelle Huet-Mignaton, “Ten years have been wasted”, in properly informing prescribers of the risks. However, “This delay in providing precise and detailed information constitutes an offence by the health authority.” According to Mr. Joseph-Oudin, the lawyer for the women having staked claims. “This case on progestogens constitutes a major public health scandal. For years, thousands of women have been exposed to very high doses of a product which was nevertheless suspected of creating very serious cerebral tumours”.

See all our articles on health subjects.

Abortion: A New Offensive at the European Parliament

by Claire Anne Brule | April 5, 2024 | Abortion, News

On 11^th April 2021 the European parliament adopted a resolution aimed at registering abortion in the charter of fundamental rights of the European Union.

Presented by the left-wing groups of Socialists and Democrats (S&D), Renew Europe (centre and liberals), the Greens and The Left (far left), the resolution was adopted by 336 votes for, 163 against and 39 abstentions. Two other alternative resolutions were tabled, one by the PPE group, and the other by the ECR conservative group. These two alternative resolutions were not put to the vote since the first one, being presented earlier, was adopted by simple majority.

The vote is quite disconnected from the European reality as was underlined by the authors of the alternative resolutions who were calling for a policy of abortion prevention together with economic and social support for expectant mothers.

Following the registration of abortion in the French Constitution, the debate returned to the European Parliament on 14^th March.

On 11^th April, a resolution is to be put to the vote of the MEPs to request registration of abortion in the Charter of Fundamental Rights of the European Union. Irrespective of the result, this is a non-binding vote.

A similar resolution was already put to the vote on 7^th July 2022 under the French presidency just after the decision by the United States Supreme Court to repeal the Roe vs Wade decree dated 24^th June 2022. With that resolution, the MEPs were also asking the European Council to discuss a Convention to enable the revision of treaties, in order to include at article 7 of the Charter that ‘‘Any person has a right to a safe and legal abortion”.

The incompetence of the European Union on the subject of abortion

During the debates on the 14^th March, several groups recalled that abortion does not come under European competence.

The absence of competence of the European Union (EU) with respect to abortion has been confirmed several times by the European institutions (European Parliament, European Commission and European Council). On 30^th April 2012, the European Commissioner for Health, John Dalli, answered a question by the MEPs (E-002933/2012): “In view of the ethical, social and cultural aspects of abortion, it is up to the member States to elaborate and ensure the application of their policies and their legislation on the subject. The Commission does not intend to supplement the national public health policies in that domain”.

Public health is an internal responsibility of the member States.

According to article 168 of the Treaty on the functioning of the European Union, the EU merely holds supporting competence on the subject, which enables it to support the choices of member States concerning:

The improvement of public health;
Information and education on health matters;
The prevention of diseases and causes of danger for physical and mental health;
The fight against major epidemics, by encouraging research into their causes, their transmission and their prevention;
The monitoring, alerting and fight against serious cross-frontier health threats;
The reduction of the harmful effects of narcotics on health.

The fact that abortions are conducted by health professionals (doctors or midwives) does not in itself make it part of healthcare.

Directive 2011/24, relative to the application of the rights of patients concerning cross-frontier healthcare, moreover states that by “healthcare”, it refers to “health services” aimed at “evaluating, maintaining or re-establishing the state of health of a patient (article 3 a). The Directive specifies also that the definition of healthcare comes under the exclusive competence of the member States, such that “none of its provisions should be interpreted in a manner such that it undermines the fundamental ethical choices operated by the member States” (considering 7).

An improbable modification to the Charter of Fundamental Rights

Since its elaboration in December 2000, the charter has never been modified. Since December 2009 and the coming into effect of the Lisbon Treaty, the Charter of Fundamental Rights of the Union has the same obligatory legal strength as the treaties. A modification would require a unanimous agreement by the 27 member States and a debate on fundamentals.

According to Alliance VITA, the addition of abortion rights to the constitution in France is not only disconnected from the current social urgencies but it further trivialises an act which jeopardises human life.

As in France, the European priorities are quite different. Everywhere in Europe there is a drop in birth rate and a delaying of the age of motherhood. The prevention of abortions and work to support women and couples in their access to parenthood, should be an all the more necessary project for the future.

End of Life Bill : Opening of a Counter for Assisted Suicide and Euthanasia

by Claire Anne Brule | March 22, 2024 | End of life

End of life bill : Opening of a counter for assisted suicide and euthanasia

The end of life bill has been submitted to the French State Council for examination, prior to its presentation to the French Cabinet on 10th April.

A bill which has been “tied-up” for months

A version dated October 2023 had already been circulated. Alliance VITA, through its spokesperson had provided an analysis. At the time, many associations of carers had denounced its terms. The version circulating today picks up on all the characteristics of the previous version and adds the criterion of psychological suffering:

“assistance in dying” would be conducted in the form of assisted suicide or euthanasia if the patient is unable to self-administer including with a close relation.
A single doctor has the final say as to whether the patient’s request meets the eligibility criteria.
Life expectancy must be threatened in the short or medium term without any definition of the term.
The decision time is relatively short: the decision may be put to execution in less than 3 weeks.
Close relations and family members have no role in the process established.
The conscience clause included does not cover pharmacists who have to prepare and provide the lethal substance, nor does it cover the institutions accommodating the patients.
Checks will only be conducted in retrospect.

This virtual absence of any modifications since October throws suspicion on the reasons for the time delay for the official announcement, made by Emmanuel Macron during an interview on 10th March. Especially as the bill does not include any constraining objectives with respect to palliative care which have been renamed as “accompaniment care”.

The content of the bill

Presentation of the motives

The presentation of motives strives to position the bill in continuity with the previous laws: Access to palliative care, refusal of unreasonable therapeutic obstinacy, possibility of ending or refusing a treatment, deep and continuous sedation until death in the event of life expectancy threatened in the short term etc.

The word dignity, which is never defined, comes up several times in the presentation. When reading the text, it is understood that dignity refers to the subjective feeling of the patient, and not the intrinsic dignity of any human being. This represents a first semantic sliding with heavy consequences.

With this bill, the break-away is confirmed with the search for a “French way” for the end of life. Put forward in 2005, this “French way” rejected therapeutic obstinacy and euthanasia. In its discussions with the members of the Citizens’ Convention on the end of life in April 2023, Emmanuel Macron spoke of “establishing a new waypoint towards this new French model for the end of life”. The process being established is in fact a foreign import.

The bill refers to a “request by society”: “to be able to choose one’s death”. However, as far as we are aware, no survey, or Citizens’ Convention has ever asked the direct question “Do you wish to be able to decide on your own death?”. The CCNE (National Consultative Ethics Committee), consulted for the bill, indicated in its controversial advice on the question (advice 139):

“The call for active assistance in dying concerns in particular the fear of a bad death: suffering from isolation, loneliness, incapacitation, dependence or the absence of access to palliative care. Finally, requests to die may also be the expression of a deep anxio-depressive syndrome (which should be evaluated and treated) in a situation where the loss of certain functions and autonomy build up, leading to a loss of self-esteem. These fears may explain the call for a legislative evolution towards the authorisation for active assistance in dying.”

How can one speak of a free and enlightened will for a decision, in such a context?

And if suicide is considered as an “ultimate freedom”, as is suggested in the presentation of motives, or even a “right”, for what reason would there be any need for prevention?

The first section of the bill is devoted to “accompaniment care and the rights of patients.”

The first articles are intended to redefine such care as a broader approach than palliative care. The notion of “palliative care” is included in the more general term of “accompaniment care”. The bill claims that such care includes “support care” (psychological and nutritional accompaniment etc.), “comfort care” (massage, music therapy etc.), such accompaniment becoming a “palliative approach initiated early including at home and regularly re-evaluated to improve the quality of life of the patient until death.”

That definition is in fact exactly that of palliative care according to the WHO!

Its web site specifies that: “Palliative care represents an approach to improve the quality of life of patients (adults and minors) and their families, confronted with problems associated with potentially fatal diseases. They prevent and relieve suffering through early recognition, correct evaluation and treatment of pain and other problems, whether they be physical, psychosocial or spiritual.”

The reality on the ground seems unknown in this bill. Music therapy is practiced in palliative care units, as well as psychological accompaniment. Jacques Ricot, the philosopher, recalls in an ancient article that the first palliative care unit in France, which opened in 1987, included a psychologist within its team. Claire Oppert, the cellist, has written a fine testimony on music therapy for people at their end of life. None of this is new, therefore, contrary to what is being claimed.

A new term has enriched the sanitary lexicon namely “accompaniment houses”, which are intermediate structures intended to accommodate patients for this general cover.

No promise of means has been given in the bill under “care”. The “accompaniment houses” will be under budgetary funding constraints (so-called ONDAM national objective for health insurance expenditure) which is already managing a health system in crisis.

The bill introduces a right to visit hospitalised patients and residents of medico-social establishments. Called for in the aftermath of the severe restrictions experienced during the sanitary crisis, this right “must however be reconciled with the organisational constraints of the establishment.”

The second section of the bill details the “assistance in dying” process.

This consists of self-administration of the lethal substance by the patient, or its administration by a health-worker or a close relation if the patient is physically incapable of doing so.

Apparently strict conditions are mentioned:

The patient must be an adult, capable of expressing their free and enlightened will, suffering from a serious and incurable condition threatening their life expectancy in the short or medium term and subject to persistent or unbearable physical or psychological suffering associated with their condition.

In an interview during which President Macron revealed the broad lines of the bill, he indicated that it would be “up to a medical team to decide, collectively and transparently, the response to be given to such requests.”

In the text submitted to the State Council, a single doctor would take the decision. The doctor consulted would seek advice from a doctor who does not know the patient, a specialist in the pathology which the patient is suffering from and a professional paramedic.

Such advice does not in any way constitute a “collective decision”. The process adopted thus establishes medical omnipotence. There is some concern that a channel may be created since the patient will be able to choose the doctor to receive the request. No link with the patient’s doctor is required. In the same conversation with the La Croix and Libération journalists, Emmanuel Macron stated that “Family members who may well be advised to act will be able to appeal against the decision”. No information to or consultation of close relations or family members is however included in the process.

The time required for implementation is relatively short: the doctor consulted has 15 days to respond to the patient, then the patient has 2 days to confirm the request.

Finally, for this so-called “French model” whose Minister in charge, Catherine Vautrin, has specified that it is “neither euthanasia, nor assisted suicide” whereas it is in fact legalising both, the bill will modify the code of insurance and the mutual insurance system which exclude suicide cases from life insurance claims during the first year of the contract.

“The frontiers of my language are the frontiers of my world”, according to Ludgig Wittgenstein, the philosopher. One can therefore understand the importance afforded by this bill to the use of its own language, manipulating new definitions of existing realities.

The world modelled by this bill is resolutely individualistic. It constitutes a total upheaval by lifting the prohibition to kill and it establishes a medical omnipotence, the first victims of which will be the most vulnerable.