Cristina Monforte-Royo

What Lies behind the Wish to Hasten Death? A Systematic Review and Meta-Ethnography from the Perspective of Patients

Background There is a need for an in-depth approach to the meaning of the wish to hasten death (WTHD). This study aims to understand the experience of patients with serious or incurable illness who express such a wish. Methods and Findings Systematic review and meta-ethnography of qualitative studies from the patients perspective. Studies were identified through six databases (ISI, PubMed, PsycINFO, CINAHL, CUIDEN and the Cochrane Register of Controlled Trials), together with citation searches and consultation with experts. Finally, seven studies reporting the experiences of 155 patients were included. The seven-stage Noblit and Hare approach was applied, using reciprocal translation and line-of-argument synthesis. Six main themes emerged giving meaning to the WTHD: WTHD in response to physical/psychological/spiritual suffering, loss of self, fear of dying, the desire to live but not in this way, WTHD as a way of ending suffering, and WTHD as a kind of control over ones life (‘having an ace up ones sleeve just in case’). An explanatory model was developed which showed the WTHD to be a reactive phenomenon: a response to multidimensional suffering, rather than only one aspect of the despair that may accompany this suffering. According to this model the factors that lead to the emergence of WTHD are total suffering, loss of self and fear, which together produce an overwhelming emotional distress that generates the WTHD as a way out, i.e. to cease living in this way and to put an end to suffering while maintaining some control over the situation. Conclusions The expression of the WTHD in these patients is a response to overwhelming emotional distress and has different meanings, which do not necessarily imply a genuine wish to hasten ones death. These meanings, which have a causal relationship to the phenomenon, should be taken into account when drawing up care plans.

The wish to hasten death: a review of clinical studies.

It is common for patients who are faced with physical or psychological suffering, particularly those in the advanced stages of a disease, to have some kind of wish to hasten death (WTHD). This paper reviews and summarises the current state of knowledge about the WTHD among people with end‐stage disease, doing so from a clinical perspective and on the basis of published clinical research. Studies were identified through a search strategy applied to the main scientific databases.

An International Consensus Definition of the Wish to Hasten Death and Its Related Factors

Background The desire for hastened death or wish to hasten death (WTHD) that is experienced by some patients with advanced illness is a complex phenomenon for which no widely accepted definition exists. This lack of a common conceptualization hinders understanding and cooperation between clinicians and researchers. The aim of this study was to develop an internationally agreed definition of the WTHD. Methods Following an exhaustive literature review, a modified nominal group process and an international, modified Delphi process were carried out. The nominal group served to produce a preliminary definition that was then subjected to a Delphi process in which 24 experts from 19 institutions from Europe, Canada and the USA participated. Delphi responses and comments were analysed using a pre-established strategy. Findings All 24 experts completed the three rounds of the Delphi process, and all the proposed statements achieved at least 79% agreement. Key concepts in the final definition include the WTHD as a reaction to suffering, the fact that such a wish is not always expressed spontaneously, and the need to distinguish the WTHD from the acceptance of impending death or from a wish to die naturally, although preferably soon. The proposed definition also makes reference to possible factors related to the WTHD. Conclusions This international consensus definition of the WTHD should make it easier for clinicians and researchers to share their knowledge. This would foster an improved understanding of the phenomenon and help in developing strategies for early therapeutic intervention.

Physical and psychological factors and the wish to hasten death in advanced cancer patients

Qualitative research suggests that the wish to hasten death (WTHD) in the advanced stages of disease is mainly related to overall suffering. This quantitative study explores the relationship between the WTHD and psychological and physical factors, including survival, in patients with advanced cancer.

Patient Perspectives of Dignity, Autonomy and Control at the End of Life: Systematic Review and Meta-Ethnography

Background Research in the end-of-life context has explored the sense of dignity experienced by patients with advanced disease, examining the factors associated with it. Whereas certain perspectives regard dignity as an intrinsic quality, independent of external factors, in the clinical setting it is generally equated with the person’s sense of autonomy and control, and it appears to be related to patients’ quality of life. This study aims to explore the relationship between perceived dignity, autonomy and sense of control in patients at the end of life. Methods We conducted a systematic review and meta-ethnography using reciprocal translation and line-of-argument synthesis. The search strategy used MeSH terms in combination with free-text searching of the Pubmed, Web of Science, CINAHL, PsycINFO and Cochrane databases, from their inception until 2015. This identified 186 articles, after excluding duplicates. The inclusion criterion was primary qualitative studies in which dignity, autonomy and control at the end of life were explored. Studies were evaluated using the CASP guidelines. Results Twenty-one studies recording the experiences of 400 participants were identified. Three themes emerged: a) dignity mediated by the loss of functionality, linked to the loss of control; b) dignity as identity; and c) autonomy as a determining factor of perceived dignity, understood as the desire for control over the dying process and the desire for self-determination. We propose an explanatory model which highlights that those patients with an intrinsic sense of dignity maintained a positive view of themselves in the face of their illness. Conclusion This synthesis illustrates how dignity and autonomy are intertwined and can be perceived as a multidimensional concept, one that is close to the notion of personal identity. The ability to regard dignity as an intrinsic quality has a positive impact on patients, and the design of care strategies should take this into account.

Death attitudes and positive coping in Spanish nursing undergraduates: a cross-sectional and correlational study

AIMS AND OBJECTIVES To analyse the relationship between death attitudes, emotional intelligence, resilience and self-esteem in a sample of nursing undergraduates. BACKGROUND The death attitudes held by nursing students may influence the care they offer to end-of-life patients and their families. Emotional intelligence, resilience and self-esteem are important social and emotional competencies for coping positively with death and dying. DESIGN Cross-sectional and correlational study. METHODS Participants were 760 nursing undergraduates from four nursing schools in Spain. Data were collected in 2013-2014. The students responded anonymously to a self-report questionnaire that gathered socio-demographic data and which assessed the following aspects: fear of death (Collett-Lester Fear of Death Scale), death anxiety (Death Anxiety Inventory-Revised), perceived emotional intelligence (Trait Meta-Mood Scale, with its three dimensions: attention, clarity and repair), resilience (Brief Resilient Coping Scale) and self-esteem (Rosenberg Self-Esteem Scale). In addition to descriptive statistics, analyses of variance, mean differences, correlations and regression analyses were computed. RESULTS Linear regression analysis indicated that attention to feelings, resilience and self-esteem are the significant predictors of death anxiety. CONCLUSIONS The results show that death anxiety and fear of death are modulated by social and emotional competencies associated with positive coping. RELEVANCE TO CLINICAL PRACTICE The training offered to future nurses should include not only scientific knowledge and technical skills but also strategies for developing social and emotional competencies. In this way, they will be better equipped to cope positively and constructively with the suffering and death they encounter at work, thus helping them to offer compassionate patient-centred care and minimising the distress they experience in the process.

Understanding meaning in life interventions in patients with advanced disease: A systematic review and realist synthesis

Background: Among patients with advanced disease, meaning in life is thought to enhance well-being, promote coping and improve the tolerance of physical symptoms. It may also act as a buffer against depression and hopelessness. As yet, there has been no synthesis of meaning in life interventions in which contextual factors, procedures and outcomes are described and evaluated. Aims: To identify meaning in life interventions implemented in patients with advanced disease and to describe their context, mechanisms and outcomes. Design: Systematic review according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and realist synthesis of meaning in life interventions using criteria from the Realist And Meta-narrative Evidence Syntheses: Evolving Standards project. Data sources: The CINAHL, PsycINFO, PubMed and Web of Science databases were searched. Results: A total of 12 articles were included in the systematic review, corresponding to nine different interventions. Five articles described randomized controlled trials, two were qualitative studies, two were commentaries or reflections, and there was one pre–post evaluation, one exploratory study and one description of a model of care. Analysis of context, mechanisms and outcomes configurations showed that a core component of all the interventions was the interpersonal encounter between patient and therapist, in which sources of meaning were explored and a sense of connectedness was re-established. Meaning in life interventions were associated with clinical benefits on measures of purpose-in-life, quality of life, spiritual well-being, self-efficacy, optimism, distress, hopelessness, anxiety, depression and wish to hasten death. Conclusion: This review provides an explanatory model of the contextual factors and mechanisms that may be involved in promoting meaning in life. These approaches could provide useful tools for relieving existential suffering at the end of life.

Understanding patients’ experiences of the wish to hasten death: an updated and expanded systematic review and meta-ethnography

Objectives Patients with advanced disease sometimes express a wish to hasten death (WTHD). In 2012, we published a systematic review and meta-ethnography of qualitative studies examining the experience and meaning of this phenomenon. Since then, new studies eligible for inclusion have been reported, including in Europe, a region not previously featured, and specifically in countries with different legal frameworks for euthanasia and assisted suicide. The aim of the present study was to update our previous review by including new research and to conduct a new analysis of available data on this topic. Setting Eligible studies originated from Australia, Canada, China, Germany, The Netherlands, Switzerland, Thailand and USA. Participants Studies of patients with life-threatening conditions that had expressed the WTHD. Design The search strategy combined subject terms with free-text searching of PubMed MEDLINE, Web of Science, CINAHL and PsycInfo. The qualitative synthesis followed the methodology described by Noblit and Hare, using the ‘adding to and revising the original’ model for updating a meta-ethnography, proposed by France et al. Quality assessment was done using the Critical Appraisal Skills Programme checklist. Results 14 studies involving 255 participants with life-threatening illnesses were identified. Five themes emerged from the analysis: suffering (overarching theme), reasons for and meanings and functions of the WTHD and the experience of a timeline towards dying and death. In the context of advanced disease, the WTHD emerges as a reaction to physical, psychological, social and existential suffering, all of which impacts on the patient’s sense of self, of dignity and meaning in life. Conclusions The WTHD can hold different meanings for each individual—serving functions other than to communicate a genuine wish to die. Understanding the reasons for, and meanings and functions of, the WTHD is crucial for drawing up and implementing care plans to meet the needs of individual patients.

What Gives Meaning in Life to Patients With Advanced Cancer? A Comparison Between Spanish, German, and Swiss Patients

CONTEXT Meaning in life (MiL) is a construct that varies across individuals, situations, cultures, and countries, and protects against emotional distress at the end of life. OBJECTIVES To examine MiL in inpatients with advanced cancer from Barcelona, Spain, and to compare the findings with those obtained in German and Swiss samples. METHODS This was a cross-sectional study in which the Schedule for Meaning in Life Evaluation (SMiLE) was administered. The SMiLE asks respondents to list individual areas that give meaning in their lives and then to rate their current level of importance and satisfaction with the listed areas. RESULTS A total of 101 inpatients completed the SMiLE. The Index of Satisfaction was 76.8 ± 21.1, the Index of Weighting was 88.0 ± 13.0, and the Index of Weighted Satisfaction was 76.9 ± 20.7. Family, partnership, well-being, and friends were the four areas listed by the largest proportion of Spanish patients. Compared with the German sample, Spanish patients were more likely to list well-being (P < 0.01) and pleasure (P < 0.05) and less likely to list animals/nature, leisure time, and finances (P < 0.01). With respect to their Swiss counterparts, Spanish patients were more likely to list health (P < 0.01) and less likely to list friends, leisure time, animals/nature, and finances (P < 0.01). CONCLUSION Differences were identified in the areas of MiL listed by the participants according to country of origin. Compared with their German and Swiss counterparts, the Spanish patients listed more areas involving interpersonal relationships. Interpersonal relationships, at both the family and wider social level, are reported to be the areas that give the greatest MiL to these patients. These aspects, therefore, should be considered when drawing up care plans designed to help patients achieve the maximum possible comfort and quality of life.

Assessment of the wish to hasten death in patients with advanced disease: A systematic review of measurement instruments

Background: Patients with advanced conditions may present a wish to hasten death. Assessing this wish is complex due to the nature of the phenomenon and the difficulty of conceptualising it. Aim: To identify and analyse existing instruments for assessing the wish to hasten death and to rate their reported psychometric properties. Design: Systematic review based on PRISMA guidelines. The COnsensus-based Standards for the selection of health Measurement INstruments checklist was used to evaluate the methodological quality of validation studies and the measurement properties of the instrument described. Data sources: The CINAHL, PsycINFO, Pubmed and Web of Science databases were searched from inception to November 2015. Results: A total of 50 articles involving assessment of the wish to hasten death were included. Eight concerned instrument validation and were evaluated using COnsensus-based Standards for the selection of health Measurement INstruments criteria. They reported data for between two and seven measurement properties, with ratings between fair and excellent. Of the seven instruments identified, the Desire for Death Rating Scale or the Schedule of Attitudes toward Hastened Death feature in 48 of the 50 articles. The Schedule of Attitudes toward Hastened Death is the most widely used and is the instrument whose psychometric properties have been most often analysed. Versions of the Schedule of Attitudes toward Hastened Death are available in five languages other than the original English. Conclusion: This systematic review has analysed existing instruments for assessing the wish to hasten death. It has also explored the methodological quality of studies that have examined the measurement properties of these instruments and offers ratings of the reported properties. These results will be useful to clinicians and researchers with an interest in a phenomenon of considerable relevance to advanced patients.