“My sister was diagnosed with Charcot’s disease. (…)she therefore decided to go quickly to Switzerland to follow the procedure of medically assisted suicide, a practice prohibited in France. (…), already very weak. She is no longer independent. She finds it difficult to raise her arms… and even occasionally to breathe,” Floriane’s brother writes to us (1).
“My 90 year old husband has been in home care since March due to severe kidney failure. (…) The GP listens but, despite his repeated requests, cannot help him die because there is no law authorizing it. (…) He suffers physically and morally (…) When will the law finally change? », writes Sylvie to us (1).
Legitimacy
These are testimonials from members of our mutual, MGEN, who are helpless in the face of the end-of-life journeys of their loved ones. For seventy-five years, our mutual has been at their side. It now protects more than 4 million people. The legitimacy of the MGEN to speak about the end of life comes from its history, made up of societal fights for the respect of the human person, and the testimonies of which our members, like the brother of Sylvie or Floriane, share with us.
It is also the result of a year of debates desired by our mutualist collective and organized within our 102 local sections and our MGEN health establishments, nourished both by the experience of our health professionals intervening at the end of life , in our nursing homes and care centers, the contribution of 6,000 activists and members as well as the results of a survey conducted by Ifop among 4,000 French people.
The result of this consultation, our manifesto aims to make effective the right to respect and dignity until the end as well as equal rights at the end of life and to allow greater freedom of choice. Whatever their place of residence, age, level of income… everyone must be able to make informed choices about their end of life.
A humanist vision
Staying at home, with or without care, living in a nursing home, being hospitalized, having recourse to palliative care… equal access to care is not effective today: the legal mechanisms, the resources allocated and their network territory remain insufficient.
Bearers of a humanist, fraternal and united vision of society, we hope that French law will effectively allow people to be relieved and accompanied until the end of their life, to live their last moments in a peaceful way, with the least pain. possible and surrounded by the love of his family. Beyond what already exists, 92% of French people and 97% of MGEN(2) members want active assistance in dying to be legalized just to tell themselves that they will be able to one day – if they decide and ‘they are eligible on the basis of their medical situation – ask to be helped to leave. We owe it to ourselves to hear their concerns, even their suffering.
Some do not conceive of being helped to die and it is their strictest right. We respect their opinion because we are attached to the debate of ideas, a fortiori when it affects the health, intimacy and personal convictions of each one.
final gesture
We hear caregivers say that their job is to “heal, not kill”. The final gesture will, of course, never be obvious, so we respect the conscience clause of the medical profession. But can we be satisfied today that the ultimate care is deep and continuous sedation? Who can say that we do not suffer in this state, without food or hydration? What about those people who suffer from incurable degenerative diseases and who wish to end them without suffering the terrible effects of the disease? What about our fellow citizens who go to Belgium or Switzerland to have recourse to active assistance in dying? What place should be given to families and friends and family? How best to support them? Freeing from suffering a sick person with no possible cure, who in conscience and repeatedly asks for it, seems to be the most humane and supportive response to provide.
However, active assistance in dying should not replace palliative care, it should complement it. An ethical path exists – as the CCNE advocates – and involves the allocation of sufficient resources to the healthcare system, to medical research and to the training of caregivers.
Participate in debates
We are waiting with serenity for the citizens’ convention and parliamentary work to open up. We are ready to participate in the debates that will be organized in the regional ethical spaces. We will defend the development of resources allocated to palliative care, respect and application of existing systems – too few French people know and have drafted their advance directives –, as well as the need to legalize active assistance in dying. If its principle seems close to consensus, its modalities remain to be determined. Well supervised, this new right could have the effect of freeing speech around death and mourning, helping to detect isolation, the renunciation of care, serious depression or even the risk of suicide. Democracy in health is built together, by pooling expertise, by listening to caregivers but also to patients and citizens, by going beyond colors and political divisions, beliefs and personal situations.
With this position, the MGEN is faithful to years of struggle for the conquest of social rights in favor of emancipation, freedom, equality and secularism. Mutual establishments, deployment of home care, teleconsultation… we explore and innovate in the territories for the health of all. We will take our part in the public debate with the ambition of contributing to building a society that is more human and lively than ever.