Ethique, personne de confiance et maladie d'Alzheimer

Abstract : The Act of March 4th, 2002, has created a new actor in the doctor-patient relationship: the health care surrogate. This person can be designated by every patient at the beginning of the hospitalization, except patients under legal protection. This person can escort the patient to receive the medical information, so with a derogation of medical confidentiality. This person can also tell the doctor what the patient would want, if the patient is not able to communicate. So this health care surrogate could be the witness, who allows the patient who can no longer communicate, to advise the medical decision. Ten years after the law, few health care surrogates are designated, even in geriatric care and for people suffering from Alzheimer disease. Different studies have been done with people acting in geriatric care: patients, caregivers, geriatricians, general practioners, and patient’s associations. The aim of these studies was to appreciate how professional of geriatrics appropriated the juridical notion of health care surrogate and how they changed their practices. Results showed that the role and missions of the health care surrogate are insufficiently known by the patients and also by the professionals. But professionals can be trained and can give to the health care surrogate his right place. Some risks are described: health care surrogate taking power on the patient, discharge from medical responsibility, spacing proxies in the benefit of the health care surrogate, burden to the surrogate. Professionals found that the procedure is time consuming, that a written document is not always adapted and that it’s an additional burden, so they are already exhausted. The lack of practice leads to a lack of use. Designation is often difficult for patients that are then faced with their own death and particularly for those who had communication difficulties. Sometimes patients did not want to choose between their children, who will be their surrogate. Health care surrogate designation was interesting in acute care and emergency room but people did not have often enough time to do it. It makes sense in chronicle diseases, for which the designation may be anticipated before patient’s arrival in the hospital. It does not seem to be any limit to designate health care surrogate, other than the moral prejudices of professionals, even for patients with Alzheimer disease. Health care surrogates allowed Alzheimer patient to express himself his will, taking care of his old personality and his actual wishes. This reflexion leads to some ethical reserves. Can patient, health care surrogate and doctors make a therapeutic alliance in acute care? Thus patient is under medical power, due to his illness and the possibility to die. Do the patient’s rights have a limit, as some patients are not allowed to designate their surrogate? The risk of routine is extreme if the sense itself of the designation is lost or not seen by professionals. Patients are often excluded from the decision process. The legal protector of the patient does not seem to be the ideal health care surrogate. This could be ameliorated by good practice recommendations: improving population and patient information, improving professional’s training, informing the health care surrogates, caregivers and families. The designation’s procedure can be extended everywhere where care is done: home, networks, nursing homes… the tools for information and designation must be adapted to everyone, and be as different as patients can be. Progressive appropriation of the concept of the health care surrogate by the care system can be done, with help of the peer’s societies and patient’s associations
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Sophie Moulias. Ethique, personne de confiance et maladie d'Alzheimer. Médecine humaine et pathologie. Université René Descartes - Paris V, 2012. Français. ⟨NNT : 2012PA05D004⟩. ⟨tel-00745279⟩

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