A strong public discussion about the end of life was unleashed in France after President Emmanuel Macron announced a “citizens’ convention” a fortnight ago to consider the possibility of legalizing assisted suicide and euthanasia. Among the reactions to the initiative, some point out that universal access to palliative care must be guaranteed in the first place, as determined by current legislation.
In the last year and a half, euthanasia was legalized in Spain, and the Portuguese parliament approved a similar project that was vetoed twice by President Marcelo Rebelo de Sousa and is now being reformulated. The debate also arose in Latin America.
France, until now, had ruled out this possibility with the so-called Leonetti Law, approved almost unanimously in 2005, about the right of terminally ill patients to be treated without “therapeutic insistence”.
Euthanasia seemed to be resolved in France, despite the persistence of radical positions. In 2013, the Leonetti Law was reformed, and the current version, known as Claeys-Leonetti, also the result of a great parliamentary consensus, was preceded by a long debate, in which euthanasia proposals were not successful.
However, in the comings and goings of successive readings in the Assembly and in the Senate, a wording was adopted that allowed different interpretations of the distinction between extraordinary therapeutic means – which can lead to “dysthanasia” – and feeding and artificial respiration essential for the maintenance of health and life.
In any case, in a consultation with citizens during the first semester of 2018, known as the General States of Bioethics, which preceded the revision of the law, scheduled every five years in response to possible scientific advances, the dominant criterion was in favor of maintaining of the law of 2017.
Faced with some pressure, there was a strong reaction of more than 175 associations and specialized in palliative care, who signed a common manifesto in favor of caring for people in the final stage of life, called Twelve reasons to say no to euthanasia and yes to palliative care.
The then presidential candidate of the Republic, Emmanuel Macron, expressed during the campaign of 2017 his desire to change that law, in the name of the autonomy of the person, and despite his background in the country. However, he let the first five years go by without promoting this reform. It resumed the project in the campaign for the last presidential elections, and has reinforced it now, although it no longer has an absolute majority in the National Assembly.
Firstly, guarantee palliative care
Macron’s announcement gave new wings to advocates of euthanasia, according to the models of the three neighboring countries that have already incorporated it into the law (the former Benelux: Belgium, the Netherlands and Luxembourg). But the discussions are also provoking a series of arguments less favorable to the president’s thesis.
A good summary is the comment of a constitutionalist, Laurent Frémont, published in Le Monde with the title: “End of life: what if the law were applied before trying to change it?”. Frémont recalls official data from 2021: only 51 )% of French people know what advance directives are (applicable when the patient loses autonomy); 91% say that their family doctor did not inform them of their rights or the law in force. Moreover, the article specifies that equality in palliative care, guaranteed by the law of 1999, is still pending: at least, according to the data from the general inspection of social affairs, 51% of the deceased did not receive this care.
Thus, three doctors – two specialists in palliative care and a psychiatrist – from the Curie Institute had expressed their repudiation of the confusion produced by defenders of the right to die with dignity, as if only assisted suicide or euthanasia allowed a dignified death. “It is very unfair to most of our fellow citizens who choose, very worthily for the courage they show, to leave this life supported by their caregivers and people close to them”.
They are attentive to problems and consider that the terms of sedation provided for in the law can be better specified, but warn of the pressure that legal assistance for suicide would bring to vulnerable, isolated or fragile people in the psychosocial sphere. “An active dying assistance law would satisfy the individualistic desire for autonomy and freedom of some, reducing the desire for fraternity of many others.”
This semester, Claude Evin, former Minister of Social Affairs , joined the fray with another article calling for a law that works for everyone. He regrets that the discussion is reduced to helping to die, and the hopes and wishes of patients and their families are rarely taken into account. But this debate cannot be resolved with a euthanasia law, as seen in neighboring countries.
The turn of the National Ethics Committee
In 13 in September, an opinion from the National Ethics Advisory Commission was made public, which was presented in Le Monde as a “turnaround”: for the first time, a law is created to help dying, under very strict conditions, based on advances in medicine and social changes.
In 2013, the Committee had considered “dangerous for society for doctors to participate in the death “. But the idea that there is no “obligation to live” a life that becomes unbearable is gaining strength. In any case, the Council does not recommend new legislation. It limits itself to pointing out, if the government decides to start the reform process, a few lines about the possibility of assisted suicide: “elderly people with serious and incurable diseases that cause incurable physical or mental suffering, with a prognosis of death in the medium term” . In any case, all physicians will be able to invoke a conscience clause.
On the other hand, eight members of the National Ethics Council (CCNE, for its acronym in French) express their reservation, as they are not attended to the requirements recommended for decades by the commission: the intensification of the offer of palliative care: “Taking a legislative step without a prior effort represents a risk that we do not want”.
They refer to the provisions of the current laws. , which call for the development of palliative care: “Most unbearable situations could be resolved within the current system if protocols on sedation were better known to physicians and applied more frequently”.
A few days later, Le Monde published one of its frequent collective forums, this time by the members of the permanent council of the Episcopal Conference. They understand the magnitude of the problems and their complexity. They recall the statement of the National Ethics Council on palliative care, in line with the deep hopes of all before the end: active help to live, more than active help to die.
Listening to patients, doctors, nurses and family members realize that the essential desire of the vast majority is to be considered, respected, helped, accompanied, not abandoned. They want their suffering to be alleviated, but at the same time they express a desire for relationship and closeness. This can only be built from a reality in which every human life is respected, accompanied, honored.
In turn, the president of the College of Physicians, in a statement from 15 of September, opposes euthanasia and cites extensively the statement of the National Ethics Commission, also on the role of the doctor in the care of terminally ill patients.
If the legal possibility of active help in dying is opened, a conscience clause is attached to the doctors’ request. In any case, the responsibility cannot be transferred to the doctor, but at the same time it cannot be ignored by him, as the French Academy of Medicine has pointed out, in the context of the Claeys-Leonetti law discussions: the acceptance by doctors of advance declarations of patients cannot be unconditional.
In short, the right to life is not absolute, like any other. But there is no right to death, also according to the jurisprudence of the European Court of Human Rights.
The debate in Latin America
Euthanasia is legal in one Latin American country, Colombia, and may soon be legal in another, Uruguay. The Colombian Constitutional Court decriminalized euthanasia in 1997, limited to terminally ill patients.
The first assisted death in Colombia it occurred 18 years later, in 2015. Since then, euthanasia has been applied more than 91 times in terminally ill patients. In July 2021, however, the Court decided to extend the option of euthanasia to all those suffering from a serious and incurable disease or injury that caused them great suffering, even if were not in a terminal phase.
The first to undergo euthanasia under these conditions was a man of 60 years old, with chronic obstructive pulmonary disease; the next day, they performed the procedure on a 51-year-old woman with amyotrophic lateral sclerosis. In 2017, a deputy from Uruguay’s ruling coalition presented a bill on euthanasia and assisted suicide, motivated by the case of a character, known in the country, who in the previous year had started a campaign for this cause.
The attempt triggered a citizen initiative in favor of palliative care, instead of euthanasia, under the name of Prudencia Uruguay. The bill continued to be processed in the Chamber of Deputies and, earlier this month, was approved by the Health Commission, to be voted on in plenary in October. At the same time, the Chamber processed a bill on palliative care, approved in December 2021, and which is being studied by the Senate Public Health Commission.