Introduced by the “End of life” law in April 2005, the so-called Leonetti law, the system of advance directives was reinforced and specified in 2016, by the second “End of life” law, so-called “Claeys Leonetti” law. In the form of a written and signed document, the advance directives “express the will of the person relative to their end of life concerning the conditions for continuing, limiting, terminating or refusing treatment or medical care”. They are intended to take over when the patient is “unable to express his/her wishes” at the time (even if the patient is not necessarily at the end of life).It is worth recalling the three essential elements of the current system:
- “Any adult may prepare advance directives.”
- “At any moment and by any means, they are revisable and revocable.”
- “Advance directives are executory for doctorsfor any investigation, operation or treatment decisions, except in the event of life-threatening urgency during the time required for a complete evaluation of the situation and when the advance directives appear manifestly inappropriate or not applicable to the medical situation.”
On this 3rd point, the law avoids making the patient an all-powerful self-prescriber and the doctor a mere servile executor of the advance directives. The Constitutional Council has just validated the non-opposable nature of the advance directives in the cases specified by the law, in particular, therefore, if the doctors consider that what has been requested in advance by the patient is “manifestly inappropriate” in relation to the medical situation. In such case, the final word still remains with the medical team.
In view of the lack of enthusiasm of the French public for this system, the public discourse, in the debate on the end of life, multiplies the obligation for them, whether or not in good health: “Write your advance directives” as if it were simple, but also as if it was a determining factor to guarantee a peaceful death. However, not only is its writing far from obvious, but additionally it does not constitute any guaranteed relevance.
It should be mentioned before explaining this advice, that Alliance VITA, being aware of these difficulties, has elaborated, tested, improved, published and distributed hundreds of thousands of copies of a Guide to advance directives and persons of confidence. Complete, educational and understandable, this document, which can be downloaded, suggests first validating a general charter; which charter indicates the universal ethics for the end of life: neither disproportionate treatment, nor euthanasia but proportional treatments and palliative care; the document then provides for expressing specific wishes and details, linked to one’s convictions and not only the foreseeable consequences of an existing illness. The document therefore goes beyond the strict scope of advance directives.
If the idea of anticipating situations where one would no longer be capable of expressing oneself appears attractive, in reality it is confronted with multiple obstacles. Several questions call for an answer:
- Am I capable, whilst I am in good health to consider in advance what will be right for me if I become dependent? Many patients discover “in situation”, to be capable of living – and keeping a thirst for life –, whereas when in good health, they would have thought death to be preferable to that type of life. To take a person at his/her word on past declarations may paradoxically lead to going against the present will that he/she is no longer capable of expressing.
- How can one consider, with no particular medical knowledge, not only the multiple catastrophic medical scenarios which one might have to face, but also the adequate responses to claim in such cases (resuscitation or not? tracheotomy or not? artificial feeding or not?). It is quite simply impossible, and may be inhuman or simply naive to ask us to project ourselves in that way.
- How can one consider – without any specific medical knowledge – the consent or refusal of such and such a treatment when one is not yet concerned? Most people do not wish to end their life “covered in tubes”, but – in the event of an accident, the various drips and life-support machines which relieve and save (analgesics, antibiotics, saline solutions, blood, air) are welcome. They cannot be rejected in advance.
- The same uncertainty, exists for peripheral subjects, not included in the official directives: like thinking of the place where one wishes to die. Most French people in good health say they wish to end their days at home; however, even if certain patients are pleased to return home to end their days, many others prefer to be hospitalised when hospitals appear to provide better security, better relief… There again, too much anticipation can lead to going against the patient’s will: “every day has its own problems to solve”.
- Finally, there is the risk that advance directives can evolve into advance requirements – more or less consciously – for euthanasia, afflicted with the same criticisms as any other anticipation. Besides, such a request – which today is manifestly illegal –would be inoperative. It should be noted that many people who believed that they had to prepare this kind of “will for life” subsequently were able to bear witness (after recovering their ability to communicate) that they were worried that the document would be found in their pocket and that their advance “wish” would be executed. A Canadian family doctor had received from one of his patients a letter requesting that – if he became seriously ill – to be euthanised. Then when diagnosed with a terminal disease, the patient kept an anxious watch on the prescriptions from the same doctor who he suspected would act. The doctor concluded: “Could it be that one doesn’t see life in the same way when in good health as when ill and at the end of life?”
It should therefore come as no surprise that, like most French people, the experts and ministers who promote advance directives have not in most cases prepared their own ! Two comments should be made: First of all, respect for medical ethics everywhere and for everyone, is more essential than the call for advance directives; also, it is quite illusory to expect every healthy person to write down something sensible and effective on the future of their life. On the other hand, a person who is seriously ill, with a spreading disease, should discuss with their doctor and decide in advance to refuse such and such invasive treatment. Thinking for example of artificial respiration, when it becomes vital. If correctly enlightened, the will of the patient to refuse such a device (which would prevent speech) must be respected, and it would be right to do so, even if the patient is incapable of confirming it. The same applies to a gastrostomy (an operation consisting in opening an orifice in the abdomen between the stomach and the outside with a view to artificial feeding.
In conclusion, over and above the writing of advance directives, it is the designation of a person of confidence which is essential. Even if, they in turn, cannot guarantee a peaceful death. The person of confidence has no responsibility for prescribing the treatments. No document, no procedure can possibly substitute for the exchanges between the carers, the patients and their families, and the establishment of reciprocal trust in respect of the competences of each and without transgressing the immutable ethics of medicine as so wisely defined by the ancient Hippocratic oath. Obviously, if a future law was to validate euthanasia, one would have to protect oneself from it by appropriate advance directives. But with no absolute certainty of the effectiveness of the document. The quality of a procedure can never replace that of a relationship.