En France, la conception traditionnelle du soin, ancrée dans une médecine paternaliste et hermétique, fait aujourd’hui figure de vestige. Elle n’a pu résister aux courants de pensée post-modernes ayant érigé en dogme la diffusion de l’information (élevée au rang du savoir) au nom de la liberté individuelle ou du bien collectif. Le médecin devient le partenaire d’un consommateur de soin qui devra, en son âme et conscience, choisir ce qui lui semble le mieux pour sa santé. Mais pour choisir, il devra être avisé – c’est-à-dire informé – par le médecin de sa pathologie, ses caractéristiques, son évolution et des risques inhérents aux choix (ou non-choix) thérapeutiques. Cette évolution de la relation médecin-malade vers une contractualisation de fait entérine l’émancipation de l’individu face au savoir. Ce n’est plus celui qui sait qui choisit, mais bien celui qui subit, et la maladie et son remède. La limite de cette évolution est la capacité à diffuser la connaissance (sera-t-elle clairement comprise ?) et la capacité du patient à faire un choix. Ce problème se posera de façon accrue si le patient présente une pathologie altérant ses capacités à accéder à une information et à clairement et positivement l’utiliser. On l’aura compris, le champ de la maladie mentale, et en particulier de la schizophrénie, pose des questions particulières face à l’évolution des courants de pensée médicaux et juridiques en ce qui concerne la relation médecin-malade, et plus spécifiquement l’information, base de l’obtention du consentement aux soins. Existe-t-il une spécificité de l’information des patients schizophrènes ? Quel type d’information peut-on leur délivrer ? À qui peut-on la délivrer et par quels moyens ? L’annonce du diagnostic ne risque-t-elle pas de déclencher un refus de soin chez un sujet souvent ambivalent vis-à-vis de la prise en charge, ou bien peut-on, en accroissant le champ de connaissance que le patient pourrait avoir sur la maladie, espérer obtenir de sa part une participation dans le soin effective et bénéfique ? Nous allons dans cet article tenter de répondre à ces questions, en mettant en exergue l’évolution de la pensée vis-à-vis de cette problématique.
The information of the schizophrenic patient : actuality
Social isolation has got to be one of the greatest losses in schizophrenia. For many authors, people with schizophrenia can have no friends, no spouse, and sometimes no family. Two thirds of patients with schizophrenia return to their parents’ house after discharge from a hospital for the first psychosi episode. Family members generally receive very little education as to what they can expect. They may not know the importance of medication compliance. Family members are the primary victims of violence from psychotic individuals, usually their own son or daughter, and most families cannot believe their own son or daughter would be capable of such a thing. Although families are usually the main care givers at the beginning of schizophrenia they often find their experience very frustrating for a number of reasons, and relationships suffer. Family education and support have been shown to improve outcomes considerably and family education is the second strongest factor in relapse prevention. Without education and good relapse prevention families often burst out. Most of the homeless mentally ill in downtown city cores have lost their family relationships. It is not a reflection on their families so much as the lack of adequate treatment and support. The families tried and tried and lost their ill relative. A patient writes : « My father lives just outside of Monaco. My mother developed Alzheimer’s a couple of years ago or so and with a series of mild strokes died recently. I haven’t seen either of them very much in the last fifteen years. I have a sister, Nicole, who also lives in Paris. I lost those relationships to some degree over the years. I am rebuilding them now.Enter the professional friend, the case manager, usually in cases where the individual is quite disabled by schizophrenia and/or at considerable risk of relapse, and usually when the individual has lost their family relationships to some degree. I had a case manager for several years and always looked forward to her visits. Case managers help negotiate compliance to medication, housing, meaningful activity, substance abuse, poverty, isolation, and everything else living in the community can throw at you.Without a spouse you tend to spend a lot of time alone. One of the main reasons Marie-Claude and I moved in with each other was that neither of us was enjoying living alone. It was very romantic at first but now we are just friends who see less and less of each other. I suspect schizophrenia interferes with the quality and depth of relationships you have with other people. Amongst the people I know, schizophrenia has meant a pretty solitary life of poverty. I have a lot of acquaintances, and colleagues, but few close friends when not at work. Over the last ten years of living with schizophrenia on medication it is celibacy that has hurt the most. It saps the life out of you, your self confidence, your self esteem. In some Scandinavian countries and Holland disabled people are allowed monthly visits by state approved sex workers. To me that is only common sense. To live without sex is unnatural and can only cause emotional suffering. We don’t recognize the importance of quality sexual experience in keeping people healthy and happy in France. That doesn’t mean it isn’t I have a pretty high profile in my community through the meaningful activity I do. From having a half dozen names and faces to remember, I now have what seems like hundreds. I have a lot of trouble remembering people’s names and faces. I am still meeting new people but I’m rarely invited to socialize with any after work. They have families, full time jobs, kids, cars, cottages, etc. My life at home is pretty solitary. It’s a nuisance to travel across the city to visit people. There are few people that I share a similar background with. Since people with schizophrenia tend to have trouble learning new things, and change very little as a result, we tend to have trouble making new friends. People with schizophrenia can come alive talking about things in the past before they became ill. It’s as if their life grinded to halt when they became sick. I’m stuck in the mid seventies, and that’s the music I like. Everybody I know with schizophrenia is quite isolated socially and I don’t really know why. That is especially true for the older people in my age group. Younger people seem to be doing much better. Many still live with their parents. Most older people live alone. There is also the odd person who recovers well, returns to a career, and marries someone without schizophrenia. In cases where marriage predates the onset of schizophrenia, the outcome is often divorce although women are more likely to stick with their husbands with schizophrenia than vice versa, especially if there are already children. I hope the next generation who appears to be less disabled survives better than people of my age with schizophrenia. The goal of community integration is one that requires : more effective treatments and/or more financial support and/or a compassionate non-discriminating community. The combination of early diagnosis and atypical medications will change the face of schizophrenia. I’m not expecting more financial support from the government, but many more people with schizophrenia will start working again instead. Their social networks will develop but social networks are probably the hardest hit in schizophrenia. It’s better that you never lose your friends in the first place ». This testimony shows how the information of the schizophrenic patient is necessary, and underlines the importance of the relationships between the patient and his family. Our article insists on this theme, rarely developed in the literature.
Mots clés : Information , Programmes éducationnels , Schizophrénie.
© 2005 Elsevier Masson SAS. Tous droits réservés.
Vol 31 - N° 2P. 227-34 - avril 2005 Retour au numéro
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