Une approche de la fin de vie qui évolue. Réflexions à partir des vingt ans de pratique en soins palliatifs

Abstract

More than just a medical issue, caring for people at the end of their lives is a subject involving every individual in our societies. International responses differ, as they are all based on individual and collective representations of what a good death should be, the ideal death that we would hope for ourselves and for our loved ones. They also derive from the history, from the moral and philosophical values and expectations, in one word of the culture of each particular country. So it is not surprising that public health policies and legislation differ widely, and that some countries have depenalized euthanasia and/or assisted suicide while others absolutely refuse such change. France is also deeply involved in this debate. As early as 2005, the legislators decided to ban the “unreasonable obstination” and also to consider that a treatment can be “stopped or not undertaken” when it becomes useless, disproportionate or maintains life artificially. They mandated that patients should be relieved from their pains and supported by teams trained in palliative care. At the end-of-life, the priority is no longer to prolong life but to relieve the patient and prioritize his or her wellness. Access to “deep and continuous sedation maintained until death”, so that patients can sleep instead of suffering when they are nearing their death, further reinforced patients’ rights in 2016. However, these new rights do not meet the wish of patients who “want to die”. The debate on euthanasia or assisted suicide is presently mobilising the French society. It is testimony of the extent to which this issue affects us all in our private lives, our personal histories and our representations, with all the difficulty of agreeing on the definition of words and the use of ethical and philosophical concepts. This debate also telling much about how we articulate our relationship with the individual and the collective. Some defend the idea that asserting an individual's choice would have no collective consequences, while others stress the opposite. The decriminalisation of active assistance in dying is presented by some as “an ultimate freedom”. But do we refer to the same definition of freedom? Are we totally free in our choices? A key point of disagreement concerns the role that medicine should play in this process. For some, under the guise of necessary fraternity, it should be totally present, even giving it powers never given to a single person. Conversely, the French palliative care society maintains that “giving death is not a care”, and they insist that “assisted dying should be kept out of healthcare”. Based on a comparative analysis of legislations in other countries, the authors describe the debate that is currently sweeping through French society. They highlight the frequent ambivalent expectations of patients and their families, of society as a whole and also of the legislator, regarding a death that would be “free of suffering”, controlled and aseptic. The authors stress the importance of carefully analyzing the patient's wish to hasten death, since of all the people who ask to die when entering a palliative care hospice, less than 5% will persist in their request once their suffering is appeased. In such cases, the request reflects a willingness to control the timing and conditions of death. Against this backdrop, the authors wonder if this debate should lead to a medical response with an active involvement of healthcare professionals, or a societal response with their limited participation. In any case they conclude that it would be an utopy to believe that a law could make our anxiety about dying disappear.