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.

Palliative sedation challenging the professional competency of health care providers and staff: a qualitative focus group and personal written narrative study.

BACKGROUND: Despite recent advances in palliative medicine, sedating a terminally ill patient is regarded as an indispensable treatment to manage unbearable suffering. With the prospect of widespread use of palliative sedation, the feelings and representations of health care providers and staff (carers) regarding sedation must be carefully explored if we are to gain a better understanding of its impact and potential pitfalls. The objective of the study was to provide a comprehensive description of the opinions of carers about the use of sedation practices in palliative care units (PCU), which have become a focus of public attention following changes in legislation. METHODS: Data were collected using a qualitative study involving multi-professional focus groups with health care providers and staff as well as personal narratives written by physicians and paramedical staff. A total of 35 medical and paramedical providers volunteered to participate in focus group discussions in three Palliative Care Units in two French hospitals and to write personal narratives. RESULTS: Health care provider and staff opinions had to do with their professional stance and competencies when using midazolam and practicing sedation in palliative care. They expressed uncertainty regarding three aspects of the comprehensive care: biomedical rigour of diagnosis and therapeutics, quality of the patient/provider relationship and care to be provided. Focusing on the sedative effect of midazolam and continuous sedation until death, the interviewed health care providers examined the basics of their professional competency as well as the key role played by the health care team in terms of providing support and minimizing workplace suffering. Nurses were subject to the greatest misgivings about their work when they were called upon to sedate patients. CONCLUSIONS: The uncertainty experienced by the carers with regard to the medical, psychosocial and ethical justification for sedation is a source of psychological burden and moral distress, and it has proved to be a major source of suffering in the workplace. Lastly, the study shows the uncertainty can have the positive effect of prompting the care team to devise ways to deal with it.

Death wishes and explicit requests for euthanasia in a palliative care hospital: an analysis of patients files.

BACKGROUND: In the current public debate in France about end-of-life and legalization of euthanasia, palliative care is considered as a suitable answer or an alternative or even a supplement to euthanasia. The debate is based on opinion surveys, partly because there is a lack of objective data about the incidence of euthanasia requests (ER) in palliative care settings. The aim of this study was to collect, classify and quantify the expressions of wishes to die (WD), based on computerized files for patients admitted to an 81-bed palliative care hospital (PCH) in Paris during 2010-2011. METHODS: Two researchers analyzed the carers' notes extracted on the basis of containing the words "wish to die", "euthanasia" or any expressions relating to death. Notes related to WD and the corresponding patients were then classified in the order: ER, suicidal thought (ST) and other wish to die (OWD). Repeated ER were qualitatively analyzed according to a grid. RESULTS: We found that 195 of the 2157 patients (9%) expressed a WD: 61 (3%) expressed an ER; 15 (1%) described ST and 119 (6%) expressed an OWD without requiring acting. The WD group was predominantly female, stayed longer in the hospital (median 24 vs. 13 days), and consumed more anxiolytics and antidepressants. None of age, disease or marital status was associated with ER. More women and widows expressed an OWD. Twenty-six ER patients also expressed an OWD and two a ST. Six patients repeated their ER: all had poorly controlled symptoms with repercussions for their mental state. CONCLUSION: Our data show the existence of various expressions of WD with a low incidence of ER in a French PCH. The observation of WD including ER is suggestive of good communication between the patients and the care teams. Independent of the changeability of expressions of WD, their very existence should lead to a consideration of the dynamic changes in these WD, and to care staff paying additional attention to the individual, their suffering and the context.

Relationships between the characteristics of oncohematology services providing palliative care and the sociodemographic characteristics of caregivers using health indicators: social support, perceived stress, coping strategies, and quality of work life.

OBJECTIVE: The aim of this study was to analyze the relationships between the characteristics of the management of oncohematology services and the psychosocial determinants of caregivers' health at work including social support, stress, and coping strategies. DESIGN: Investigation using questionnaires was carried out about nurses and nurse aides in hematology and oncology services. SETTING: All hematology and oncology services of Western France were requested. Five questionnaires concerning sociodemographic characteristics, measurements of quality of work life, of social support, of perceived stress, and of coping strategies and quality of work life were delivered among health professionals. PARTICIPANTS: Five hundred seventy-four questionnaires from 53 different services were analyzed. There were 57.4% nurses and 42.6% nurse aides. Some 94.1% were female and 33.5% were older than 40 years. RESULTS: Several characteristics of oncohematology services were significantly linked to health indicators, as the need for time and recognition, the importance of training (in palliative care, pain management, and help relationship), the care of patients and their families, the interdisciplinary efficiency, and external interventions (psychologists and volunteers). We showed that participative management which includes implementation of service projects and of multidisciplinary staff influence the quality of work life of health professionals. We showed also how much the characteristics of services organized around an effective social support (need for recognition) favor a better quality of work life among caregivers, influencing their perceived stress and their coping strategies. CONCLUSION: To our knowledge, it is the first study showing a relationship between participative management (including multidisciplinary staffs, approach with a service project, and internal training) and the quality of work life in the domain of health care. The implementation of this model should be promoted in health care services.

Palliative care in emergency departments: an impossible challenge?

The aim of this study was to investigate the care practices surrounding end-of-life patients and the scope for providing palliative care in two emergency department short-stay units. Two qualitative methods of investigation were used: direct ethnographic-type observation and semi-directed group interviews. The results highlight the fact that end-of-life situations inflect the practices of care and give rise to adjustments in the organization of work. These practices operate in two registers: that of supporting the family and that of attention to the patient's comfort. We propose a typology of end-of-life patients. In conclusion, the practices, termed 'palliative care' by the caregivers, are addressed to terminally ill patients expected to die shortly. This issue should be debated within emergency departments.

[The time of dying and the time of hospital: end of life patients in emergency departments]. / Le temps du mourir et le temps de l'hôpital : prise en charge des patients en fin de vie aux Urgences.

A significant number of seriously ill patients die in French emergency departments. A qualitative study of the care of end of life patients in two emergency departments in teaching hospitals was conducted to analyze the work of practitioners. Organizational and funding constraints exert a significant influence on the quality of care, which in some cases may become inconsistent and cause tensions among staff. These issues are largely the result of contradictions between the temporal characteristics of some deaths and work organization. This paper offers a number of suggestions for improving the care of end of life patients in emergency departments.