The debate on the end of life is open
Here we are. Emmanuel Macron’s campaign promise in 2022, the debate on the end of life will take place. And this, from October, announced the Élysée on September 13. The same day, the National Consultative Ethics Committee (CCNE) made its opinion known on the subject. The very nuanced text considers, for the first time, the possibility of medical assistance in dying, under certain strict conditions. “Reconciling two fundamental principles guided our writing,” says Alain Claeys, co-rapporteur, “solidarity with the most fragile people and respect for their autonomy.”
Thus, the CCNE insists on the imperative need to combine strengthening of palliative care and respect for certain ethical criteria, if the law evolves. Considering satisfactory the framework established by the Claeys-Leonetti law of 2016 which provides for the possibility of deep and continuous sedation until death for someone who has a few hours or days left to live, the body considers that a Access to suicide assistance could be open to adults suffering from incurable illnesses, causing refractory suffering, whose vital prognosis is compromised in the medium term (a few weeks or months).
Does our death belong to us? Faced with this question, CCNE would like to be a “compass”. A compass that points towards a public debate. Eight of its members nevertheless expressed a “reservation”. They intend that certain prerequisites are already in place before a legislative development can be discussed: better knowledge of the legislative measures; guarantee access to palliative care and support for anyone at the end of life; analyze requests for assistance in dying in France and abroad, in order to assess their motivation and impacts on loved ones and society. “Listening to patients, caregivers, families, palliative care stakeholders, we perceive that the essential need of the greatest number is to be considered, respected, helped, accompanied, not abandoned,” reacted the French bishops in a column published in the The world on September 16. “Their suffering must be relieved, but their calls also express their need for relationship and closeness. Isn’t the deepest expectation of all active help to live, rather than active help to die? “
A national reflection
A citizens’ convention will have to decide. It constitutes the keystone of the system, which also provides for an invitation to carry out transpartisan work launched to parliamentarians and subgroups bringing together caregivers and user and patient associations.
Without knowing how this parallel work will be orchestrated, nor what follow-up will be given to the reflections of the citizens’ convention – parliamentary route? referendum? –, regional ethical reflection spaces, learned societies, associations are mobilizing throughout France. “This will be an opportunity to say again and again that we are considering making a new law while the previous one is not applied,” announces Claire Fourcade, president of the French Society for Support and Palliative Care ( SFAP). “So far, the law sends a message of solidarity, which we caregivers bring to patients, in the name of society: “You matter to us and we will do everything we can to relieve you.” If we decide together that the message is oriented towards autonomy: “Everyone decides for themselves and that does not concern others”, its impact on vulnerable people will be very strong. Not only will the change be important for these people , but also for caregivers. If we are only there in our own name, our role will be more difficult.”
Get out of for or against
“It is essential to hear the words of those most concerned and to have them interact with each other, in order to shed light on the complexity of the end of life and avoid reducing the debate to a binary question,” adds Sarah Dauchy, president. of the National Center for Palliative and End-of-Life Care. This public body created in 2016 by the government cultivates its neutrality: “It is built to be an interface with citizens and above all, via its expert commission – bringing together SFAP, intensive care, emergency medicine, geriatrics, of pediatrics, college of psychiatry, associations representing users and caregiver associations -, an interface between the different parties concerned by the end of life. This can be an asset in bringing the citizens’ convention to life.”
“Until now, we have been able to find a particular path for France with a balance that seemed supportive to me,” considers Claire Fourcade. “I hope that this coming time will be an opportunity to look for one that is not a copy of another model.”
The coming months will reveal more about our collective vision of the end of existence.
