BackgroundResearch 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.MethodsWe 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.ResultsTwenty-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.ConclusionThis 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.
ObjectivesPatients 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.SettingEligible studies originated from Australia, Canada, China, Germany, The Netherlands, Switzerland, Thailand and USA.ParticipantsStudies of patients with life-threatening conditions that had expressed the WTHD.DesignThe 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.Results14 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.ConclusionsThe 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.
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.
Objective: The objective of the study is to test a model in which perceived loss of dignity and control are proposed, along with symptoms of depression and functional impairment, as risk factors for the wish to hasten death (WTHD) in advanced cancer patients.Methods: This was a cross-sectional study of 193 patients in an oncology unit. Outcome measures included perceived control, performance status, symptoms of depression, perceived dignity, and the WTHD. Structural equation modeling was performed. Results: Structural equation modeling showed that perceived loss of control (−0.402) and functional impairment (−0.21) were risk factors for perceived loss of dignity. Loss of control (−0.385) and functional impairment (−0.283) were also risk factors for symptoms of depression. Perceived loss of dignity and symptoms of depression were the most proximal determinants of the WTHD, on which they had a direct, positive, and significant effect (0.246 and 0.209, respectively). Therefore, both symptoms of depression and perceived loss of dignity independently predicted the WTHD and mediated the effects of perceived loss of control and functional impairment on this wish. Conclusions: The hypothesized model provides evidence for the impact of the four aforementioned factors on the WTHD. Our results suggest that personalized care plans which are able to enhance the sense of dignity and control among advanced cancer patients could help to reduce the likelihood or intensity of a WTHD. KEYWORDS cancer, control, depression, desire to die, dignity, functional status, mediation model, oncology, self-efficacy, wish to hasten death 1 | BACKGROUND Patients with advanced disease sometimes express a wish to hasten death (WTHD), which can be understood as a response to suffering of multifactorial origin. 1,2 Research on the factors associated with a WTHD in these patients has highlighted the importance of considering factors related to different domains: physical, psychological, and existential/spiritual. 2,3 Qualitative studies suggest that the expression of a WTHD can have several different meanings and functions. 2 Accordingly, it has been argued that the WTHD should not be seen an explicit request to die. 4Patients who express a WTHD often allude to a loss of dignity. [5][6][7] This was highlighted in a meta-ethnography which found that a perceived loss of dignity was a central feature of the loss of self that patients experienced in the context of a life-threatening condition.Research on the WTHD and perceived loss of dignity has also Cristina Monforte-Royo and Iris Crespo contributed equally to this work. /journal/pon highlighted the importance of a sense of control over their circumstances and the dying process. 8,9 In addition, various studies have found that for some people, a perceived loss of dignity and of autonomy are key reasons why they wish to hasten death, especially in countries where euthanasia or assisted suicide are decriminalized. 10,11 Despite extensive literature on the WTHD and physical impairment, 12,13 depression, ...
It is not uncommon for patients with advanced disease to express a wish to hasten death (WTHD). Qualitative studies of the WTHD have found that such a wish may have different meanings, none of which can be understood outside of the patient's personal and sociocultural background, or which necessarily imply taking concrete steps to ending one's life. The starting point for the present study was a previous systematic review of qualitative studies of the WTHD in advanced patients. Here we analyse in greater detail the statements made by patients included in that review in order to examine their moral understandings and representations of illness, the dying process and death. We identify and discuss four classes of assumptions: (1) assumptions related to patients' moral understandings in terms of dignity, autonomy and authenticity; (2) assumptions related to social interactions; (3) assumptions related to the value of life; and (4) assumptions related to medicalisation as an overarching context within which the WTHD is expressed. Our analysis shows how a philosophical perspective can add to an understanding of the WTHD by taking into account cultural and anthropological aspects of the phenomenon. We conclude that the knowledge gained through exploring patients' experience and moral understandings in the end-of-life context may serve as the basis for care plans and interventions that can help them experience their final days as a meaningful period of life, restoring some sense of personal dignity in those patients who feel this has been lost.
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