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

ABSTRACT: 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.

SUBMITTER: Rodriguez-Prat A

PROVIDER: S-EPMC4806874 | biostudies-literature | 2016

REPOSITORIES: biostudies-literature

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

Rodríguez-Prat Andrea A Monforte-Royo Cristina C Porta-Sales Josep J Escribano Xavier X Balaguer Albert A

PloS one 20160324 3

<h4>Background</h4>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 di ...[more]

PMID: 27010323

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Project description:BackgroundIncreasing physical activity in older adults remains a key public health priority in countries with a high burden of non-communicable disease, yet current interventions have failed to substantially increase population uptake with UK data suggesting that only half of 65-74 year olds report meeting recommended levels. The aim of this study was to conduct a systematic and inductive qualitative synthesis of the large body of qualitative research describing what influences physical activity at this age, and older adults' experiences of physical activity.MethodsA qualitative meta-ethnography was chosen as the study design as this inductive approach can provide novel insights and generate new theory about physical activity and ageing. Papers were identified by searching electronic databases and key citations. Peer-reviewed primary qualitative studies and systematic reviews were included if they met the following inclusion criteria: community-dwelling participants aged 60 years or older or in the retirement transition period; reporting on leisure-time physical activity; utilising a rigorous qualitative methodology. A line of argument approach was employed to generate a theory about how older adults think and feel about physical activity.ResultsThirty-nine papers met the inclusion criteria and were synthesised. The emergent theory suggested transition to older age can challenge people's sense of self and their role in life. Physical activity can help in regaining feelings of purpose, of being needed in collective group activity, and by creating habitual routine and structure to the day. In overcoming real and perceived barriers, and by taking up or sustaining physical activities, older adults can further build self-esteem all of which contributes to a fulfilling older age.ConclusionCurrent failures to increase population levels of physical activity in older adults may be explained by an approach overly focused on the health benefits of activity. Insights from this study suggest we need to reframe our approach to consider the wider set of goals and aspirations which are of greater personal importance to older adults, and future interventions should focus on how physical activity can contribute to life satisfaction, sense of purpose, and sense of role fulfilment in older age.Trial registrationRegistered prospectively on PROSPERO on 29th March 2013: CRD42013003796 .

Project description:BackgroundPersonalised (or individualised) medicine in the days of genetic research refers to molecular biologic specifications in individuals and not to a response to individual patient needs in the sense of person-centred medicine. Studies suggest that patients often wish for authentically person-centred care and personal physician-patient interactions, and that they therefore choose Complementary and Alternative medicine (CAM) as a possibility to complement standard care and ensure a patient-centred approach. Therefore, to build on the findings documented in these qualitative studies, we investigated the various concepts of individualised medicine inherent in patients' reasons for using CAM.MethodsWe used the technique of meta-ethnography, following a three-stage approach: (1) A comprehensive systematic literature search of 67 electronic databases and appraisal of eligible qualitative studies related to patients' reasons for seeking CAM was carried out. Eligibility for inclusion was determined using defined criteria. (2) A meta-ethnographic study was conducted according to Noblit and Hare's method for translating key themes in patients' reasons for using CAM. (3) A line-of-argument approach was used to synthesize and interpret key concepts associated with patients' reasoning regarding individualized medicine.Results(1) Of a total of 9,578 citations screened, 38 studies were appraised with a quality assessment checklist and a total of 30 publications were included in the study. (2) Reasons for CAM use evolved following a reciprocal translation. (3) The line-of-argument interpretations of patients' concepts of individualised medicine that emerged based on the findings of our multidisciplinary research team were "personal growth", "holism", "alliance", "integrative care", "self-activation" and "wellbeing".ConclusionsThe results of this meta-ethnographic study demonstrate that patients' notions of individualised medicine differ from the current idea of personalised genetic medicine. Our study shows that the "personal" patients' needs are not identified with a specific high-risk group or with a unique genetic profile in the sense of genome-based "personalised" or "individualised" medicine. Thus, the concept of individualised medicine should include the humanistic approach of individualisation as expressed in concepts such as "personal growth", "holistic" or "integrative care", doctor-patient "alliance", "self-activation" and "wellbeing" needs. This should also be considered in research projects and the allocation of healthcare resources.

Project description:Background: The literature on professionals' perceptions of dignity at the end-of-life (EOL) shows that there is a need for studies set in different cultural contexts. Lithuania represents one of these little-studied contexts. The aim of this study is to understand professionals' attitudes, experiences, and suggestions concerning EOL dignity to provide knowledge upon which efforts to improve EOL care can be grounded. The research questions are "How do Lithuanian health care professionals understand the essence of dignity at the end-of-life of terminally ill patients?" and "How do they believe that dignity at the EOL can be enhanced?". Materials and Methods: The study was exploratory and descriptive. It employed an interpretive phenomenological method to understand the essence of the phenomenon. Lightly structured interviews were conducted with professionals who had EOL experience, primarily with elderly and late middle-aged patients. from medicine, nursing, social work, and spiritual services. The interviews were primarily conducted by audiovisual means due to pandemic restrictions. Using a constant comparative method, the research team systematically codified text and developed themes by consensus after numerous analytic data iterations. Results: Four primary themes about EOL dignity were identified: Physical Comfort, Place of Care and Death, Effects of Death as a Taboo Topic, and Social Relations and Communication. A fifth, overarching theme, Being Heard, included elements of the primary themes and was identified as a key component or essence of dignity at the EOL. Conclusions: Patient dignity is both a human right and a constitutional right in Lithuania, but in many settings, it remains an aspiration rather than a reality. Being Heard is embedded in internationally recognized patient-centered models of EOL care. Hearing and acknowledging individuals who are dying is a specific skill, especially with elderly patients. Building the question "Is this patient being heard?" into practice protocols and conventions would be a step toward enhancing dignity at the EOL.

Dataset Information

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

Publications

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

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