2023-05-20 21:11:08
Agnès Firmin-Le Bodo, the Minister Delegate for Health Professions, announces it to the JDD: it is she who will carry the bill opening a right to active assistance in dying, and not the Minister of Health, the emergency doctor François Braun, reserved on the subject. This pharmacist, close to Édouard Philippe, spoke out in favor of the law (not adopted) on the right to a free and chosen end of life while she was a deputy, in 2021.
Since the fall, she has conducted work on the subject and visited six countries practicing euthanasia or assisted suicide. As of this week, an unprecedented legislative co-construction process will begin with a group of caregivers and parliamentarians. Objective: to present the text before September 21, according to Emmanuel Macron’s wish. But Agnès Firmin-Le Bodo can already specify the perimeter and the safeguards. And unveils its strategy to finally develop palliative care. A presidential campaign promise, a national emergency.
It is ultimately you, and not the Minister of Health François Braun, who will pilot the bill on active assistance in dying. For what ?
The end of life has been, since my appointment to the government, at the heart of the missions entrusted to me. This choice is not linked to our respective positions. A minister ignores his personal opinions anyway when it comes to raising such an issue. The President of the Republic and the Prime Minister wanted this subject, which concerns us all, to be the subject of intense consultation. The bill will include three blocks: active assistance in dying, palliative care and patients’ rights.
Minors will be excluded; the vital prognosis of the patient must be engaged in the medium term; his will repeatedly collected; his discernment intact
The minister Agnès Firmin-Le Bodo
What will the French model look like: assisted suicide or/and euthanasia?
It remains to be defined. What matters is that the supervised possibility of benefiting from active assistance in dying becomes effective, as demanded by 75% of our fellow citizens. However, the President has already set red lines: minors will be excluded; the vital prognosis of the patient must be engaged in the medium term; his will repeatedly collected; his discernment intact.
What do you mean by medium term?
This is a point at the heart of the work in progress. The Claeys-Leonetti law only responds with deep and continuous sedation until death to situations where the patient is in great pain with a life-threatening prognosis a few days away. In Oregon, in the United States, where active assistance in dying has been practiced for twenty-five years, it must be done within six months. Other points have not been settled: what is the time limit for reiterating the request? Will the multidisciplinary team examine the first or the second request? Is there a psychological consultation between the two?
Will patients with mental illnesses have access to it?
No. A medium-term vital prognosis means that there is no hope of recovery. In terms of mental suffering, science and care are evolving. Similarly, if a majority of pediatric cancers led to the death of the child ten years ago, more than 80% are now cured. Rather than fixing a list of diseases giving access to active assistance in dying, it would be better to qualify the impact of the pathologies concerned.
LPhysicians and caregivers who do not wish to participate in active assistance in dying must be able to use a conscience clause
The minister Agnès Firmin-Le Bodo
What safeguards do you foresee?
I already see two. Firstly, doctors and caregivers who do not wish to take part in active assistance in dying will have to be able to use a conscience clause from the first stage of the process, when they have to decide on a vital prognosis committed in the medium term. Then, it will be necessary to ensure that the patient has indeed been offered palliative care. Because most of them no longer wish to die when they benefit from this care.
Unlike foreign countries, you advocate both a priori and a posteriori control…
We must ensure traceability from A to Z. At present, we do not know how many patients in France have access to deep and continuous sedation until death! For active assistance in dying, it seems essential to me to be able to follow the whole process. For medico-legal reasons of course. But also to establish how many people have had access to this new right each year and under what conditions. In Oregon, many of the patients who come to collect the lethal product do not use it, but no one knows what happens to the little bottle!
Jean-François Delfraissy, the president of the national advisory committee on ethics, invites us to reflect on the place of associations; which might relieve caregivers…
That’s what the Swiss did. And partly the Americans. There, some of the doctors who make the prescription accompany the patient until the end, even if it is the latter who administers the lethal potion himself. Associations have a role to play. Is it only on the accompaniment part? Or for the performance of the act? The two are not incompatible, it all depends on the procedure that will be decided at each stage of the process.
Do you fear a barrage in Parliament?
The citizens’ convention showed that we might discuss in a peaceful way. Today, a new phase is beginning and the government wants the bill to be co-constructed with parliamentarians. On such a subject of society, we can – and even we must – be able to come out on top. One of the positive points of the current collective reflection is that we have not, this time, opposed palliative care and active assistance in dying.
NWe want to create a medical sector devoted to palliative care. This involves issues of training, but also of territorial organization
The minister Agnès Firmin-Le Bodo
Despite five successive plans, palliative care is still not sufficiently developed. How to change the situation?
First, we will publish in the next few days a ministerial instruction to update the 2008 circular which governed the offer of palliative care. We are considering whether the bill might provide for its review every five years, as is the case with the provisions of bioethics laws. Then, to remedy the inequalities of access that persist, we must be part of the long term. We are therefore preparing a ten-year plan, as for cancer or rare diseases, which will come into force in 2024. I will soon launch the strategic committee responsible for developing it, under the aegis of the former president of the High Council for Public Health, Professor Franck Chauvin. After a progress report on July 13, this plan will be finalized on December 15.
In which areas should progress be made?
My objective is firstly that the 20 departments without a palliative care unit [USP] have them by the end of 2024. We have 20 million euros in credits which will be devoted to this. Moreover, while the population is aging and the number of chronic patients is increasing, general practitioners are not sufficiently trained in palliative care, and there is no specialty as such. We want to create a medical sector devoted to palliative care. This involves issues of training, but also of territorial organization. The objective is to offer a graduated support in three levels.
According to the gravity of the situation?
Yes. The palliative care units, within the CHUs, will be reserved for the most complex cases. The second level is the deployment of mobile palliative care teams and hospitalization at home. Ehpad and medico-social establishments must have access to a specific mobile team within ten years. Finallywe are going to create a third level: day hospitalization, on an outpatient basis, in connection with local hospitals, to anticipate the care of the patient.
It will be necessary to better support the 500,000 children and young adults caring for a loved one at the end of life
The minister Agnès Firmin-Le Bodo
Between hospital crisis and shortage of caregivers, is it feasible?
Care must be taken to ensure that the means earmarked for this palliative care are not diverted to other services in the hospital. This explains the delay of certain establishments. Others are reluctant to open a palliative care unit because they are afraid – I have heard it – of degrading their mortality indicators… This is not acceptable!
What are you planning for the children?
We want to create, from 2024, a pediatric palliative care unit at the national level. The objective will be to open four or five in total, with six beds each. About half of the approximately 15,000 minors suffering from complex chronic illnesses would need palliative care. Moreover, better support is needed for the 500,000 children and young adults caring for a loved one at the end of life.
Only a minority of French people have filed advance directives. How to promote them?
We will offer a simplified model, centralized in a single place, on My health space, which can be consulted by doctors, even firefighters and emergency services. This would make it possible, in the event of an accident, to avoid situations like that of Vincent Lambert. We would like to add a second type of “accompanied” directives to allow, when a doctor announces an incurable pathology, to engage in a discussion with the patient to bring him to specify what he wishes.
Did you write them yourself?
Not yet ! I promised myself to do it before the end of the summer.
I prefer the name “chosen death” to that of assisted suicide, which evacuates death. I am convinced that it is precisely necessary to put it back at the heart of our society.
The minister Agnès Firmin-Le Bodo
Are you planning a massive information campaign, as required by the citizens’ convention on end of life?
The debates held in the Regions since the autumn and the convention have put our relationship to death back at the heart of discussions in families. Preventive medical consultations for all French people at key ages – 20, 40, 60 – should also be an opportunity to start this dialogue. On the other hand, this fall, we will be broadcasting a major campaign with the National Center for Palliative and End-of-Life Care which had been postponed to let the citizens’ convention work.
Would you like, as in Italy, to integrate a lexicon into French law?
Yes, to ensure that everyone has the same definition. Personally, I prefer the term “chosen death” to that of assisted suicide, which evacuates death. I am convinced that it is rightly necessary to put it back at the heart of our society. The bill will also include measures to support caregivers and bereavement. Our fellow citizens wish to die at home, this issue is essential. We have to offer them respite solutions, training… As a woman who had just lost her husband told me: “I went from loving to helping. The only difference between the two is a “d”, for difficult ».
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