Papers by Aline Chassagne
Ce travail, intitulé La peine et le soin : une enquête sur l’espace et le temps des malades en pr... more Ce travail, intitulé La peine et le soin : une enquête sur l’espace et le temps des malades en prison, analyse le sens de la peine sous le prisme du soin. L’enquête explore différents mondes juxtaposés : de la peine, du soin et de l’environnement personnel du détenu. À partir d’un ancrage empirique solide, constitué de nombreuses observations et d’entretiens réalisés auprès de détenus malades et des différents professionnels évoluant dans cet environnement,une anthropologie de l’espace et du temps est proposée. La démarche concerne la manière dont les détenus-patients ainsi que les professionnels de la surveillance et du soin tentent d'articuler leurs activités autour de la maladie dans le monde de la prison et dans celui de l'hôpital. Les activités de ces mondes sont aussi analysées au regard de l'horizon temporel de la sortie de prison menacé par le temps de la maladie et de la mort. Contraintes spatiales et temporelles, qualification des personnes, des objets, des lie...
Lectures, Mar 18, 2012
Suite de l’histoire « Michael Peterson », condamne a perpetuite en octobre 2003 par le tribunal d... more Suite de l’histoire « Michael Peterson », condamne a perpetuite en octobre 2003 par le tribunal de Caroline du Nord (USA) pour le meurtre de sa femme Kathleen. Huit ans plus tard, un rebondissement survient dans l’affaire du celebre ecrivain de Durham et conduit a sa liberation conditionnelle en decembre 2011. En effet, l’expert scientifique qui a analyse la scene du « crime » aurait falsifie ses resultats dans une trentaine d’affaires, au point d’envoyer des innocents en prison (affaire Greg...
Background Whilst euthanasia and assisted suicide are forbidden by French Law, patients at the en... more Background Whilst euthanasia and assisted suicide are forbidden by French Law, patients at the end of life, hospitalized in Palliative Care Units, sometimes express the Wish to Hasten their Death. Few Studies have analyzed the formulation of these patient requests in interviews and the associated death-related representations. The DESA study analyzed the expression of patients' requests, focusing on the terms and how patients worded their wishes. The aim is to identify from the "raw wording" of the patients' requests, the means of expressing them in all its singularity and evolution. Methods This is a qualitative study that took place in 11 French Palliative care Units during on year and included adult patients who had made an explicit request (euthanasia or physician assisted suicide) to a health care provider. Semi-structured interviews were conducted within 48 hours of the initial request (D0), then a week later (D7). Results At DO, the initial request is a request for euthanasia and it calls a third person urgently. This request is related to physical and psychological suffering, trauma and representations of death. At D7, we observe a semantic change; the request is less explicit and requires less intervention by a third party. The quest remains that of a death without suffering. Conclusions These patients express themselves easily on their request and listening is necessary to be able to hear the meaning of the words but also their functions. It is their nuance, variety and evolution that help to understand what the requirements mean. Trial registration number : ClinicalTrials.gov Identi er: NCT02845817
Médecine Palliative, Mar 1, 2023
European Journal of Medical Genetics, Jun 1, 2019
With the development of next generation sequencing, beyond identifying the cause of manifestation... more With the development of next generation sequencing, beyond identifying the cause of manifestations that justified prescription of the test, other information with potential interest for patients and their families, defined as secondary findings (SF), can be provided once patients have given informed consent, in particular when therapeutic and preventive options are available. The disclosure of such findings has caused much debate. The aim of this work was to summarize all opinion-based studies focusing on SF, so as to shed light on the concerns that this question generate. A review of the literature was performed, focusing on all PubMed articles reporting qualitative, quantitative or mixed studies that interviewed healthcare providers, participants, or society regarding this subject. The methodology was carefully analysed, in particular whether or not studies made the distinction between actionable and non-actionable SF, in a clinical or research context. From 2010 to 2016, 39 articles were compiled. A total of 14,868 people were interviewed (1,259 participants, 6,104 healthcare providers, 7,505 representatives of society). When actionable and non-actionable SF were distinguished (20 articles), 92% of respondents were keen to have results regarding actionable SF (participants: 88%, healthcare providers: 86%, society: 97%), against 70% (participants: 83%, healthcare providers: 62%, society: 73%) for non-actionable SF. These percentages were slightly lower in the specific situation of children probands. For respondents, the notion of the «patient's choice» is crucial. For healthcare providers, the importance of defining policies for SF among diagnostic lab, learning societies and/or countries is outlined, in particular regarding the content and extension of the list of actionable genes to propose, the modalities of information, and the access to information about adultonset diseases in minors. However, the existing literature should be taken with caution, since most articles lack a clear definition of SF and actionability, and referred to hypothetical scenarios with limited information to respondents. Studies conducted by multidisciplinary teams involving patients with access to results are sadly lacking, in particular in the medium term after the results have been given. Such studies would feed the debate and make it possible to measure the impact of such findings and their benefit-risk ratio.
Médecine Palliative, May 1, 2023
PLOS ONE, Oct 26, 2017
The question of withdrawing artificial nutrition and hydration from people in a permanent vegetat... more The question of withdrawing artificial nutrition and hydration from people in a permanent vegetative state sparks considerable ethical and legal debate. Therefore, understanding the elements that influence such a decision is crucial. However, exploring perceptions of artificial nutrition and hydration is methodologically challenging for several reasons. First, because of the emotional state of the professionals and family members, who are facing an extremely distressing situation; second, because this question mirrors representations linked to a deep-rooted fear of dying of hunger and thirst; and third, because of taboos surrounding death. We sought to determine the best method to explore such complex situations in depth. This article aims to assess the relevance of the photo-elicitation interview method to analyze the perceptions and attitudes of health professionals and families of people in a permanent vegetative state regarding artificial nutrition and hydration. The photo-elicitation interview method consists in inserting one or more photographs into a research interview. An original set of 60 photos was built using Google Images and participants were asked to choose photos (10 maximum) and talk about them. The situations of 32 patients were explored in 23 dedicated centers for people in permanent vegetative state across France. In total, 138 interviews were conducted with health professionals and family members. We found that the photo-elicitation interview method 1) was well accepted by the participants and allowed them to express their emotions constructively, 2) fostered narration, reflexivity
Corps & psychisme, 2019
Les progres vertigineux des biotechnologies font emerger la promesse d’une medecine genomique per... more Les progres vertigineux des biotechnologies font emerger la promesse d’une medecine genomique personnalisee du XXIe siecle dont nous decrirons les enjeux societaux, ethiques et psychologiques. A partir d’un cas clinique, nous montrerons que l’information genetique predictive issue de l’analyse de l’exome est a l’origine de reactions impredictibles chez les sujets. Nous concluons que, quelles que soient les avancees scientifiques, la vulnerabilite ontologique de l’etre humain et la radicale contingence de l’avenir peuvent toujours laisser une place a l’inattendu, permettant au sujet de rester acteur de sa destinee.
HAL (Le Centre pour la Communication Scientifique Directe), May 28, 2021
Médecine & Droit, Jun 1, 2019
Médecine & Droit xxx (2018) xxx-xxx Droit pénal Le juge, le médecin et le détenu. Regard critique... more Médecine & Droit xxx (2018) xxx-xxx Droit pénal Le juge, le médecin et le détenu. Regard critique sur la suspension de peine pour raison médicale The judge, the physician and the prisoner. A critical view of the "suspension de peine" for medical reason
Presse Medicale, May 1, 2018
To cite this article: Pillet M, et al. Dying in hospital: Qualitative study among caregivers of t... more To cite this article: Pillet M, et al. Dying in hospital: Qualitative study among caregivers of terminally ill patients who are transferred to the emergency department.
European Journal of Human Genetics, Feb 1, 2019
Exome sequencing (ES) has revolutionized diagnostic procedures in medical genetics, particularly ... more Exome sequencing (ES) has revolutionized diagnostic procedures in medical genetics, particularly for developmental diseases. The variety and complexity of the information produced has raised issues regarding its use in a clinical setting. Of particular interest are patients' expectations regarding the information disclosed, the accompaniment provided, and the value patients place on these. To explore these issues in parents of children with developmental disorders and no diagnosis with known etiology, a multidisciplinary group of researchers from social and behavioral sciences and patient organizations conducted a mixed-methodology study (quantitative and qualitative) in two centers of expertise for rare diseases in France. The quantitative study aimed to determine the preferences of 513 parents regarding the disclosure of ES results. It showed that parents wished to have exhaustive information, including variants of unknown significance possibly linked to their child's disorder and secondary findings. This desire for information could be a strategy to maximize the chances of obtaining a diagnosis. The qualitative study aimed to understand the expectations and reactions of 57 parents interviewed just after the return of ES results. In-depth analysis showed that parents had ambivalent feelings about the findings whatever the results returned. The contrasting results from these studies raise questions about the value of the information provided and parents' high expectations regarding the results. The nature of parental expectations has emerged as an important topic in efforts to optimize accompaniment and support for families during the informed decision-making process and after disclosure of the results in an overall context of uncertainty.
La mise en place de directives anticipées est-elle souhaitable ? L’accouchement à domicile est-il... more La mise en place de directives anticipées est-elle souhaitable ? L’accouchement à domicile est-il une bonne pratique ? Faut-il laisser une entière liberté de mouvement à un patient en fin de vie hospitalisé ? Le champ médical est l’une des sphères privilégiées où se définissent les modalités de la venue au monde ou de la fin de la vie, participant ainsi à cadrer des expériences qui ont en commun de « mettre l’humanité en lien avec l’inconnu » et qui constituent des « formes élémentaires de l’événement » dont la nature biologique est toujours socialisée et symbolisée. En étant confrontée au début et à la fin de l’existence, la médecine est susceptible d’être ramenée aux arbitraires sociaux, politiques et culturels qui la fondent. Ce dossier thématique met en lumière l’ambiguïté des prises en charge de ces événements et analyse la manière dont « la vie et la mort sont attribuées, contestées et mises en acte de manière pragmatique ». Il explore symétriquement ce que les technologies bi...
Anthropologie & santé, Nov 17, 2017
La loi Francaise du 4 mars 2002 a introduit la possibilite de suspendre la peine des personnes de... more La loi Francaise du 4 mars 2002 a introduit la possibilite de suspendre la peine des personnes detenues en fin de vie. Cependant, tous les detenus malades en fin de vie n'ont pas acces a cette mesure. La plupart d’entre eux sont accueillis dans une Unite Hospitaliere Securisee Interregionale (UHSI) souvent pendant plusieurs semaines, parfois jusqu’a leur deces. Le but de cet article est de mettre en evidence la perception des soins palliatifs des patients detenus et des professionnels les accompagnant. Apres avoir expose les conditions de notre enquete de terrain, nous montrons comment les contraintes spatiales et temporelles inherentes au fonctionnement de l’UHSI entravent les possibilites d’accompagnement des detenus en fin de vie. Pour finir, nous montrons que la question de la mort reste impensee dans ce milieu contraint. Ainsi, la definition de la « bonne mort » et les objectifs de la sanction penale sont questionnes.
Revue des politiques sociales et familiales
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Papers by Aline Chassagne