Prevalence and characteristics of prisoners requiring end-of-life care: A prospective national survey.

BACKGROUND: Ensuring adequate end-of-life care for prisoners is a critical issue. In France, data investigating the impact of laws allowing release of seriously ill prisoners are lacking. AIM: To assess the number and characteristics of prisoners requiring palliative care in French prisons. DESIGN: A prospective, national survey collecting data over a 3-month period. SETTING/PARTICIPANTS: All healthcare units ( n = 190) providing care for prisoners in France. The prison population was 66,698 during the study period. Data collection concerned prisoners requiring end-of-life care, that is, with serious, advanced, progressive, or terminal illness and life expectancy <1 year. RESULTS: Estimated annual prevalence of ill prisoners requiring end-of-life care was 15.2 (confidence interval: 12.5-18.3) per 10,000 prisoners. The observed number of prisoners requiring palliative care ( n = 50) was twice as high as the expected age- and sex-standardized number based on the general population and similar to the expected number among persons 10 years older in the free community. In all, 41 of 44 (93%) of identified ill prisoners were eligible for temporary or permanent compassionate release, according to their practitioner. Only 33 of 48 (68%) of ill prisoners requested suspension or reduction in their sentence on medical grounds; half (16/33) received a positive answer. CONCLUSION: The proportion of prisoners requiring palliative care is higher than expected in the general population. The general frailty and co-existing conditions of prisoners before incarceration and the acceleration of these phenomena in prison could explain this increase in end-of-life situations among prisoners.

Is shared decision-making vanishing at the end-of-life? A descriptive and qualitative study of advanced cancer patients' involvement in specific therapies decision-making.

BACKGROUND: Little is known about what is at stake at a subjective level for the oncologists and the advanced cancer patients when they face the question whether to continue, limit or stop specific therapies. We studied (1) the frequency of such questioning, and (2) subjective determinants of the decision-making process from the physicians' and the patients' perspectives. METHODS: (1) All hospitalized patients were screened during 1 week in oncology and/or hematology units of five institutions. We included those with advanced cancer for whom a questioning about the pursuit, the limitation or the withholding of specific therapies (QST) was raised. (2) Qualitative design was based on in-depth interviews. RESULTS: In conventional units, 12.8 % of cancer patients (26 out of 202) were concerned by a QST during the study period. Interviews were conducted with all physicians and 21 advanced cancer patients. The timing of this questioning occurred most frequently as physicians estimated life expectancy between 15 days and 3 months. Faced with the most frequent dilemma (uncertain risk-benefit balance), physicians showed different ways of involving patients. The first two were called the "no choice" models: 1) trying to resolve the dilemma via a technical answer or a "wait-and-see" posture, instead of involving the patients in the questioning and the thinking; and 2), giving a "last minute" choice to the patients, leaving to them the responsibility of the decision. In a third model, they engaged early in shared reflections and dialogue about uncertainties and limits with patients, proxies and care teams. These schematic trends influenced patients' attitudes towards uncertainty and limits, as they were influenced by these ones. Individual and systemic barriers to a shared questioning were pointed out by physicians and patients. CONCLUSIONS: This study indicate to what extent these difficult decisions are related to physicians' and patients' respective and mutually influenced abilities to deal with and share about uncertainties and limits, throughout the disease trajectory. These insights may help physicians, patients and policy makers to enrich their understanding of underestimated and sensitive key issues of the decision-making process.

Women and health professionals' perspectives on a conditional cash transfer programme to improve pregnancy follow-up: a qualitative analysis of the NAITRE randomised controlled study.

OBJECTIVES: Women of low socioeconomic status have been described as having suboptimal prenatal care, which in turn has been associated with poor pregnancy outcomes. Many types of conditional cash transfer (CCT) programmes have been developed, including programmes to improve prenatal care or smoking cessation during pregnancy, and their effects demonstrated. However, ethical critiques have included paternalism and lack of informed choice. Our objective was to determine if women and healthcare professionals (HPs) shared these concerns. DESIGN: Prospective qualitative research. SETTING: We included economically disadvantaged women, as defined by health insurance data, who participated in the French NAITRE randomised trial assessing a CCT programme during prenatal follow-up to improve pregnancy outcomes. The HP worked in some maternities participating in this trial. PARTICIPANTS: 26 women, 14 who received CCT and 12 who did not, mostly unemployed (20/26), and - 7 HPs. INTERVENTIONS: We conducted a multicentre cross-sectional qualitative study among women and HPs who participated in the NAITRE Study to assess their views on CCT. The women were interviewed after childbirth. RESULTS: Women did not perceive CCT negatively. They did not mention feeling stigmatised. They described CCT as a significant source of aid for women with limited financial resources. HP described the CCT in less positive terms, for example, expressing concern about discussing cash transfer at their first medical consultation with women. Though they emphasised ethical concerns about the basis of the trial, they recognised the importance of evaluating CCT. CONCLUSIONS: In France, a high-income country where prenatal follow-up is free, HPs were concerned that the CCT programme would change their relationship with patients and wondered if it was the best use of funding. However, women who received a cash incentive said they did not feel stigmatised and indicated that these payments helped them prepare for their baby's birth. TRIAL REGISTRATION NUMBER: NCT02402855.

Added value of functional neuroimaging to assess decision-making capacity of older adults with neurocognitive disorders: protocol for a prospective, monocentric, single-arm study (IMAGISION).

INTRODUCTION: Assessment of decision-making capacity (DMC) is essential in daily life as well as for defining a person-centred care plan. Nevertheless, in ageing, especially if signs of dementia appear, it becomes difficult to assess decision-making ability and raises ethical questions. Currently, the assessment of DMC is based on the clinician's evaluation, completed by neuropsychological tests. Functional MRI (fMRI) could bring added value to the diagnosis of DMC in difficult situations. METHODS AND ANALYSIS: IMAGISION is a prospective, monocentric, single-arm study evaluating fMRI compared with clinical assessment of DMC. The study will begin during Fall 2021 and should be completed by Spring 2023. Participants will be recruited from a memory clinic where they will come for an assessment of their cognitive abilities due to decision-making needs to support ageing in place. They will be older people over 70 years of age, living at home, presenting with a diagnosis of mild dementia, and no exclusion criteria of MRI. They will be clinically assessed by a geriatrician on their DMC, based on the neuropsychological tests usually performed. Participants will then perform a behavioural task in fMRI (Balloon Analogue Risk Task) to analyse the activation areas. Additional semistructured interviews will be conducted to explore real life implications. The main analysis will study concordance/discordance between the clinical classification and the activation of fMRI regions of interest. Reclassification as 'capable', based on fMRI, of patients for whom clinical diagnosis is 'questionable' will be considered as a diagnostic gain. ETHICS AND DISSEMINATION: IMAGISION has been authorised by a research ethics board (Comité de Protection des Personnes, Bordeaux, II) in France, in accordance with French legislation on interventional biomedical research, under the reference IDRCB number 2019-A00863-54, since 30 September 2020. Participants will sign an informed consent form. The results of the study will be presented in international peer-reviewed scientific journals, international scientific conferences and public lectures. TRIAL REGISTRATION NUMBER: NCT03931148.

[Study of representations of end-of-life platelet transfusion by its protagonists: Patients, nurses and hematologic oncologists]. / Étude des représentations de la transfusion plaquettaire en fin de vie par ses acteurs : patients, infirmiers et médecins d'hématologie.

INTRODUCTION: End-of-life platelet transfusion practice in onco-hematology is subjective and depends on representations shared by patients, nurses and hematologists. This study aims to describe these representations of platelet transfusion in a context of a severe and advanced hematologic malignancy through the social representation of its protagonists. METHODS: A qualitative study, using the associative network method and including three groups of 15 participants (patients with an advanced hematologic malignancy, regularly transfused in platelet concentrates; nurses and hematologic oncologists) from four hematology centers was conducted between February and April 2019. Analysis was carried out using IraMuTeQ software. RESULTS: Patients expect platelet transfusion to have a direct beneficial impact on their health and highlight human relations. Nurses aim at the patient's well-being, in his or her individuality, and at respecting the transfusion protocol. Physicians seek to relieve symptoms by taking into account a multitude of decision-making factors. The textual clustering method, nuances those previous results and individualizes four different orientations, independent of groups: dependency, singularity, subjectivity and neutrality. DISCUSSION: The perception of the social representations related to platelet transfusion at the end-of-life should make it possible to adapt the discourse to the preferred orientation of the speaker and could be an asset in goals of care discussion with patients as well as with teams in charge of palliative care.

Investigation of opposition to diagnostic or therapeutic procedures in older people hospitalized in acute geriatric services: the OPTAH pilot study protocol.

BACKGROUND: Shared decision-making is a process that involves collaborative discussions between a patient and a care team to ensure informed healthcare decisions. This process becomes more complex when the older person's decision-making capacities are affected. In these situations, surrogate decision-making processes are used to define a person-centered care plan. Despite these processes, the implementation of the care plan defined in the best interest of the patient may nevertheless be rejected by the patient, particularly in cases of neurocognitive disorders or delirium. This concept of opposition and/or refusal is frequently used in research. This is not yet well understood in the medical literature, and there is a lack of consensus on its definition. We, therefore, explored this concept by defining opposition to diagnostic or therapeutic proposals. METHOD: Our pilot study protocol is based on a mixed methodology (epidemiological and qualitative research) to quantify this phenomenon, validate the proposed definition, and explore its core elements. Opposition and refusal of care will be quantified, and semi-structured interviews will be conducted with patients, their relatives, and referring carers. Multidisciplinary meetings that will be associated with these situations will also be observed and analyzed. Methodological approaches that can be used to explore opposition and refusal of care in a scientific, reproducible framework are presented. This methodology considers the specificities of the geriatric, polypathological population with neurocognitive disorders. DISCUSSION: Opposition and refusal of care are key concepts in clinical research on ethics, particularly in the geriatric field. These concepts are frequently mentioned in studies involving older patients but have not been specifically defined or studied. This study would undoubtedly lead to greater awareness among professional caregivers and relatives of the significance of such opposition, and more respectful interactions in these complex hospitalization cases. TRIAL REGISTRATION: ClinicalTrial.gov, NCT03373838 . Registered on 14 December 2017.

Exploring the perceptions of physicians, caregivers and families towards artificial nutrition and hydration for people in permanent vegetative state: How can a photo-elicitation method help?

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 and introspection, 3) offered a sufficient "unusual angle" to allow participants to go beyond stereotypes and habits of thinking, and 4) can be replicated in other research areas. The use of visual methods currently constitutes an expanding area of research and this study stressed that this is of special interest to enhance research among populations facing end-of-life and ethical issues.