“Do you want us to read your text together?” “ They are face to face, in this somewhat cold office of the Protestant nursing home of Bordeaux Bagatelle, in Talence (Gironde). The voice of Dr. Élise Chartier, palliative care physician, is warm, as if to instill confidence. Three times she has received Edith (1), 68, for a somewhat special consultation: in remission after several cancer relapses, Edith was sent here, at the suggestion of her oncologist, to write her advance directives.
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Established by the Leonetti law of 2005, this document allows a patient to specify, in writing, what he wishes for his end of life, in the event that, when the day comes, he is no longer able to express himself. . “Officially, there is a form, with checkboxes. But it’s too reductive ”, comments Dr Julie Pouget who, within this service, set up these consultations.
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Vertigo of projection
Delicate exercise indeed that these directives. How to project? How to anticipate, without knowing exactly what awaits you? How can we imagine the acts we want to benefit from, and what we want to refuse? Dialogue with the doctor, who questions and guides, is invaluable.
→ INVESTIGATION. End of life, better known devices
“My end of life? I want to live it surrounded by those I love, in full awareness. I don’t want to end up like my sister, lying in a bed, haggard. I don’t want to be like my mother, dying of old age, looking like a mummy. When we know that the end of life is here and that there is no longer any hope, why prolong? “
She hesitates, looks at the doctor: “I would like to benefit from deep and continuous sedation until death. In these cases, how long does it take to die? ” Élise Chartier: “It’s variable. It may take a few days. ” Edith: “Oh no, in these cases, it’s not worth it. I don’t want it to last too long. ““That ? “, asks the doctor. “This moment when suffering overwhelms you, cuts you off from your loved ones, answers Edith. I think assisted suicide is more in line with my wishes. ” The doctor, gently: “But you know he’s not allowed?” “
“I want to stay in control of my life”
Edith thinks, explains that she wants to keep until the end “His dignity”. “What do you put behind that word?” “, bounces Élise Chartier. “To be worthy, for me, is not to depend. I want to stay in control of my life. “
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The doctor listens, takes notes, specifies medical points. “I hear a double concern from you. That of no longer being able to choose and that of suffering. You claim that you do not want to endure your end of life. You want to be on top of things. But illness causes you to lose control. I don’t know how you are going to die. Perhaps peacefully, in your bed. But in the event of suffering, do you think that you will be able to be relieved? “
Thinking about death, cultivating one’s autonomy: these consultations are a “A precious tool of counter-power” in the face of medical omnipotence, according to Julie Pouget. Between each meeting, Edith rereads, erases, questions herself. On the first date, she had cried. At the end of it, she will say feel “Appeased”. His advance directives are now finalized.