The citizens' convention on the end of life, organized by the Economic, Social and Environmental Council, has submitted its report to the government after four months of discussions, reflections and votes. The citizens selected were invited to enlighten the public authorities on the issue of end-of-life support and were in favor of active assistance in dying.
This extremely sensitive subject, which refers each person to their own vulnerability, calls upon dimensions consultations, societal, legal, ethical, philosophical and, of course, policies.
This is also the meaning of this convention decided in high places: citizens, citizens, should the law evolve?
The limits of wishes for the end of life
Legislation on the end of life in France has been able to reinvent itself since the first milestones laid by the Kouchner law of 1999 which guaranteed access to palliative care. There Leonetti law of 2005, Then Claeys-Leonetti law of 2016 opened up rights for people at the end of life. Beyond the cessation of treatment, they frame the designation of a with a trusted person and the writing of advance directives, written statement that can be made by any adult person to specify their wishes regarding their end of life.
These provisions are seen as effective means of removing uncertainties related to end-of-life conditions. At the time of their votes, they were unanimously welcomed. However, they are ineffective.
A team of researchers has analyzed the ability of people of trust to make decisions corresponding to the wishes of their loved one. Based on almost 20 patient-trusted person response pairs on hypothetical end-of-life scenarios, they came to a worrying conclusion: in a third of cases, the person of trust is mistaken about the treatment preference of his loved one and does not make the decision that he would like.
Even more alarming: this figure remains the same when discussions on these issues have already taken place. Indeed, people of trust can prioritize their own values over those of their loved ones. In the absence of clear advance directives, the appointment of a support person would not be effective in current practices.
However, individuals find it difficult to clearly express their opinions on the end of life. Older people in particular can shed some light on this point. If death seems more and more distant from our daily lives, it takes on a particular importance. with advancing age.
However, asking an elderly person to make a decision about their end of life is not easy, including when the family and caregivers seem to have reached an agreement. They may in particular be confronted with moral dilemmas: should one consider not having one's life extended under certain conditions? Is it possible to agree to let others decide for oneself if it is no longer possible to express oneself?
The question is particularly complex in the case of elderly people living in institutions. They may find themselves limited in the expression of choices as important as those which will define their last moments of existence - because of their state of health, because all their freedoms are not respected, or because they are simply not asked the question. According to a study conducted in 2013-2014 in 78 retirement homes in France, questions relating to the end of life were discussed with a maximum of 21,7% of residents. In 32,8% of cases, no discussion of end-of-life issues ever took place, either with the resident or with loved ones. It's a paradox, if we think that these places of accommodation are alsoultimate places to live.
A difficult application of advance directives
In an other exploratory study, British health researchers have highlighted the worries older people when asked to think about palliative care and euthanasia (and in particular the conditions of their implementation). Thus, even if advance directives have been drafted in anticipation of hypothetical future difficulties, the elderly will not necessarily be able to adhere to them when they are really confronted with the end of their existence.
Writing advance directives is not everything. It is still necessary to be accompanied to choose if they still correspond to an existential conception which has been able to evolve, especially in these difficult times. The benefits of advance directives are limited by the difficulties of health systems to integrate the expression of patient choices in care practices, especially when work organization is complex, time-constrained and emotionally charged.
It is understandable: taking into account advance directives on the conditions of the end of life implies giving a place to exchanges which take into account the existential choices of all. It is necessary to recognize expertise in patients, even the oldest who are able to say for themselves what is most suitable. Also central are the ethical issues associated with often complex clinical situations, with trained professionals, who must be available.
Exceed the current limits?
The citizens' convention which has just ended proposes to go further than the current provisions. By a large majority, it voted for the introduction into the law of the notion of active assistance in dying as part of a process of support and coordination with palliative care.
This is where the shoe pinches and where the question arises of a real political will to change the legislative framework for the end of life, given the state of the French health system. It is surprising to find that theevaluation of the Claeys-Leonetti law of 2016 took place at the same time as the citizens' convention: a prior assessment would certainly have been beneficial for the quality of the work of the convention.
The High Authority for Health has, however, given some framework elements in 2020.She specifies that the Claeys-Leonetti law is not sufficiently applied by health professionals: a improvement is needed in the dialogue between health professionals and patients, even the oldest. Progress is also needed in supporting them and their loved ones.
Next, will decision-makers introduce active assistance in dying while the palliative care system is criticized for its unequal aspect (26 departments have no palliative care units) and more broadly for a lack of obvious means ?
Current practices, undersized, are not satisfactory and result from a tendency to think about devices without taking into account the variety of experiences. Contrary to certain presuppositions, all people at the end of life do not necessarily want to die at home. Expectations about end-of-life conditions are not uniform. Certain basic needs, which require specific support, may be incompatible with death at home, depending on the situation.
The proposals of the citizens' convention face a complex reality that is still poorly understood. The difficulties surrounding advance directives are only one question among many.
Faced with these findings, it seems legitimate to ask the question of a real political will to introduce the notion of assisted dying into the law, a development that has been refused until now. Many questions remain and an end-of-life inventory prior to the agreement would have contributed to the desired changes. Such progress would require an in-depth review of a suffering health system.
Stephane Alvarez, Lecturer in sociology, Grenoble Alpes University (UGA) et Emmanuel Monfort, Lecturer in Psychology, Grenoble Alpes University (UGA)
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