The Citizens’ Convention on End-of-Life Care, organized by the Economic, Social, and Environmental Council, submitted its report to the government after four months of discussions, deliberations, and votes. The selected citizens were invited to provide guidance to public authorities on the issue of end-of-life care and have come out in favor of active assistance in dying.
This extremely sensitive topic, which makes each person confront their own vulnerability, involves medical, societal, legal, ethical, philosophical, and, of course, political dimensions.
That, in fact, is the purpose of this agreement, which was decided at the highest levels: fellow citizens, should we change the law?
Legislation on end-of-life care in France has evolved since the groundwork was laid by the 1999 Kouchner Act, which guaranteed access to palliative care. The Leonetti Act of 2005, followed by the Claeys-Leonetti Act of 2016, established new rights for people at the end of life. Beyond the withdrawal of treatment, these laws provide a framework for designating a trusted person and drafting advance directives—a written statement that any adult may make to specify their wishes regarding the end of their life.
These provisions are seen as effective ways to address the uncertainties surrounding end-of-life care. When they were put to a vote, they were unanimously welcomed. Yet they have had little practical effect.
A team of researchers analyzed the ability of trusted individuals to make decisions that reflect their loved one’s wishes. Based on nearly 20,000 pairs of responses from patients and their trusted representatives regarding hypothetical end-of-life scenarios, they reached a troubling conclusion: in one-third of cases, the trusted representative misjudges their loved one’s treatment preference and does not make the decision that the loved one would have wanted.
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Even more alarming: this figure remains the same even when discussions on these issues have already taken place. In fact, trusted individuals may prioritize their own values over those of their loved ones. In the absence of clear advance directives, designating a trusted individual would not be effective under current practices.
However, people find it difficult to clearly express their views on end-of-life care. Older adults, in particular, can shed light on this issue. While death may seem increasingly distant from our daily lives, it takes on special significance as we grow older.
However, asking an older person to make a decision about the end of their life is not necessarily easy, even when the family and healthcare providers seem to have reached an agreement. In particular, they may face moral dilemmas: Should they consider not having their life prolonged under certain conditions? Is it possible to accept letting others decide for you if you are no longer able to express your own wishes?
The issue is particularly complex in the case of older adults living in long-term care facilities. These individuals may find their ability to express choices—including those as significant as those that will define their final moments of life—limited, whether due to their health condition, because their rights are not fully respected, or simply because they are not asked the question. According to a study conducted in 2013–2014 in 78 nursing homes in France, end-of-life issues were discussed with no more than 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 their loved ones. This is a paradox, considering that these care facilities are alsothe final places where people live out their lives.
In another exploratory study, British health researchers highlighted the concerns of older adults when asked to think about palliative care and euthanasia (and, in particular, the conditions under which they are carried out). Thus, even if advance directives have been drafted in anticipation of potential future difficulties, older adults may not necessarily be able to adhere to them when they are actually facing the end of their lives.
Drafting advance directives is not enough. Patients also need support in determining whether these directives still align with their current outlook on life, which may have evolved—especially during these difficult times. The benefits of advance directives are limited by the challenges healthcare systems face in incorporating patients’ expressed choices into care practices, particularly when work processes are complex, subject to time constraints, and emotionally taxing.
It is clear that taking advance directives regarding end-of-life care into account requires creating a space for discussions that respect everyone’s existential choices. It is essential to recognize patients’ expertise—even that of the oldest patients— who are capable of deciding for themselves what is best for them. Equally central are the ethical issues associated with often complex clinical situations, which require trained professionals who must be available to provide support.
The Citizens’ Convention, which has just concluded, proposes going beyond the current provisions. By a large majority, it voted to enshrine in law the concept of active assistance in dying as part of a process of support and coordination with palliative care.
This is where the problem lies, and where the question arises as to whether there is genuine political will to reform the legal framework governing end-of-life care, given the state of the French healthcare system. It is surprising to note thatthe evaluation of the 2016 Claeys-Leonetti Act took place at the same time as the Citizens’ Convention: a preliminary evaluation would certainly have benefited the quality of the Convention’s work.
However, the French National Authority for Health provided some guidance in 2020. It noted that the Claeys-Leonetti Law is not being sufficiently implemented by healthcare professionals: there is a need for improvement in the dialogue between healthcare professionals and patients, even the oldest among them. Progress is also needed in providing support to these patients and their loved ones.
Next, will policymakers introduce assisted dying when the palliative care system is criticized for its inequities (26 departments lack palliative care units) and, more broadly, for an obvious lack of resources?
Current practices, which are insufficient, are unsatisfactory and stem from a tendency to design systems without taking into account the variety of experiences. Contrary to certain assumptions, not all people at the end of life necessarily wish to die at home. Expectations regarding end-of-life care are not uniform. Certain essential needs, which require specific support, may—depending on the situation—be incompatible with dying at home.
The proposals from the Citizens’ Convention are grappling with a complex reality that is still poorly understood. The challenges surrounding advance directives are just one issue among many others.
In light of these findings, it seems reasonable to question whether there is genuine political will to enshrine the concept of assisted dying in law—a development that has thus far been rejected. Many questions remain, and an assessment of end-of-life care prior to the convention could have helped bring about the desired changes. Such progress would require a thorough overhaul of a struggling healthcare system.
