Understanding why patients request euthanasia when it is illegal: a qualitative study in palliative care units on the personal and practical impact of euthanasia requests.

CONTEXT: Some patients in palliative care units request euthanasia regardless of legislation. Although studies have explored the reasons for these requests, little is known about the subjective, relational, and contextual repercussions for the patient. OBJECTIVES: The aim of this study is to understand the purpose of euthanasia requests from the patient's viewpoint and their personal and practical impact. METHODS: We conducted in-depth interviews with patients requesting euthanasia, their family members, and health care providers in 11 French palliative care units. A thematic analysis of the data was performed. RESULTS: In total, 18 patients were interviewed within 48 h of the request being made; 1 week later, 9 patients were interviewed again. Five main themes emerged: assuming the possibility of transgressing the forbidden, a call for unbearable suffering to be recognized, encouragement to change clinical practice, reclaiming a sense of freedom over medical constraints, and imagining a desirable future for oneself. CONCLUSIONS: A request for euthanasia appears to be a willful means to remove oneself from the impasse of an existence paralyzed by suffering. It creates a space for discussion, which promotes negotiation with patients on care practices and therapeutics, and strengthens patients' sense of autonomy. Investigating the relationship between the evolution of euthanasia requests within the palliative care setting could be beneficial. It is important to encourage health care professionals to adopt a readiness to listen by interacting with patients in a way that is not momentarily action-oriented but rather focused on proactive discussion.

Secondary actionable findings identified by exome sequencing: expected impact on the organisation of care from the study of 700 consecutive tests.

With exome/genome sequencing (ES/GS) integrated into the practice of medicine, there is some potential for reporting incidental/secondary findings (IFs/SFs). The issue of IFs/SFs has been studied extensively over the last 4 years. In order to evaluate their implications in care organisation, we retrospectively evaluated, in a cohort of 700 consecutive probands, the frequency and burden of introducing the search for variants in a maximum list of 244 medically actionable genes (genes that predispose carriers to a preventable or treatable disease in childhood/adulthood and genes for genetic counselling issues). We also focused on the 59 PharmGKB class IA/IB pharmacogenetic variants. We also compared the results in different gene lists. We identified variants (likely) affecting protein function in genes for care in 26 cases (3.7%) and heterozygous variants in genes for genetic counselling in 29 cases (3.8%). Mean time for the 700 patients was about 6.3 min/patient for medically actionable genes and 1.3 min/patient for genes for genetic counselling, and a mean time of 37 min/patients for the reinterpreted variants. These results would lead to all 700 pre-test counselling sessions being longer, to 55 post-test genetic consultations and to 27 secondary specialised medical evaluations. ES also detected 42/59 pharmacogenetic variants or combinations of variants in the majority of cases. An extremely low metabolizer status in genes relevant for neurodevelopmental disorders (CYP2C9 and CYP2C19) was found in 57/700 cases. This study provides information regarding the need to anticipate the implementation of genomic medicine, notably the work overload at various steps of the process.

Exome sequencing in clinical settings: preferences and experiences of parents of children with rare diseases (SEQUAPRE study).

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.

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.

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.

The Collision of Inmate and Patient.

Every year in France 100 inmates die in prison from illness, but their experiences with end of life (EOL) have not been investigated to date. The purpose of this article is to highlight the realities regarding inmates at the end of life, putting into perspective the viewpoints of the sick prisoners with those of the health and correctional professionals accompanying them. Based on qualitative research, the challenge is to identify potential barriers to palliative care for inmates in order to consider possible improvements. The study results reveal that EOL inmates were not fully considered as patients and did not benefit from a comprehensive palliative care approach. For most dying inmates, and according to many health professionals, compassionate release on medical grounds remains the best approach to deal with EOL issues.

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.

Parenteral nutrition at the palliative phase of advanced cancer: the ALIM-K study protocol for a randomized controlled trial.

BACKGROUND: Malnutrition is a common complication in patients at the palliative stage of cancer. During the curative phase of cancer, optimal enteral or parenteral nutrition intake can reduce morbidity and mortality, and improve quality of life. When the main goal of treatment becomes palliative, introduction of artificial nutrition is controversial. Although scientific societies do not recommend the introduction of artificial nutrition in all cases of malnutrition, especially in hypophagic patients if their life expectancy is shorter than 2 months, considerable differences in the use of parenteral nutrition in nonsurgical oncology practice are noted around the world. One explanation is a paucity of well-conducted randomized controlled trials in these situations, and consequently, the risk/benefit ratio of parenteral nutrition and its impact on quality of life in palliative care remains uncertain. METHODS/DESIGN: The ALIM-K study is a French national multicenter randomized controlled trial designed to evaluate the effectiveness of parenteral nutrition, versus an exclusive oral-feeding supply, on the quality of life of malnourished patients who have a functional digestive tube and who are at the palliative phase of advanced cancer with a life expectancy of more than 2 months. DISCUSSION: This article presents the methodologic options chosen for our study, and in particular, the choice of the Zelen method of randomization, the definition of the main end point (quality of life), the choice of comparator (oral feeding), and the inclusion criteria (life expectancy of more than 2 months), which are all critical points in building a randomized controlled trial in the setting of palliative care. TRIAL REGISTRATION: This study was registered with the clinical trials database ClinicalTrials.gov on May 27, 2014, under the number NCT02151214.

"Card sorting": a tool for research in ethics on treatment decision-making at the end of life in Alzheimer patients with a life threatening complication.

BACKGROUND: End stage dementia is a particularly difficult aspect of care for patients with Alzheimer's disease and related dementias. In care institutions, caregivers and family are concerned by treatment decision-making for an acute life threatening complication occurring in Alzheimer patients at the end of life. How should the best treatment pathway be decided: to treat or not to treat? Which arguments are used for decision-making? These are mainly ethical questions which are currently difficult to express and investigate. METHODS/DESIGN: Cross sectional multicentre study of clinical cases involving 67 health centres (university hospitals, general hospitals, local hospitals and homes for the elderly) in the east of France. The method was based on the "card sorting" technique, with a set of 36 cards, each labelled with a different item relating to arguments for treatment decision-making. For each clinical case, medical staff and carers expressed in a meeting the pieces of information which they believed had been taken into account in the decision. Each participant received a card game, selected fewer than ten and ranked them according to the importance they attached to each one. All selected cards were then put on the table anonymously for participants, respecting the order of importance of the cards in each pile. Lastly, all games were photographed together in order to analyse occurrence and order frequencies. The cards were then classified on the table by frequency to open the discussion. Discussion time, which was conducted by the head carer of the department, concerned the clinical situation of the patient based on the shared responses. DISCUSSION: During team meetings, the "card sorting" method was quickly adopted by professionals as a tool to assist with discussion beyond the context of the study. The participants were not compelled to mention their feelings in relation to a case, and it is significant that the anonymity which we tried to maintain so that each person felt "listened to" without value judgement was very often discarded by the individuals themselves.