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Being Heard: A Qualitative Study of Lithuanian Health Care Professionals' Perceptions of Dignity at the End-of-Life.

ABSTRACT: 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.

SUBMITTER: Butkeviciene R

PROVIDER: S-EPMC8707950 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:AimsTo explore and understand the experiences of patients with advanced illness in relation to dignity during end-of-life care in emergency departments.DesignQualitative study based on Gadamer's hermeneutics.MethodsBetween September 2019 and February 2020, 16 in-depth interviews were carried out with advanced illness patients who attended emergency departments. The participants were informed priorly and signed informed consent. The data were analysed using an inductive strategy for finding emerging themes. The Consolidated Criteria for Reporting Qualitative Research was used for writing the study's report.ResultsIn the data analysis process, two main themes emerged that glean the experiences of patients in relation to dignity during end-of-life care in emergency departments. 'Dignity as an individual's attribute' and 'Acting with dignity: Dignity as a behavioural attribute'.ConclusionPatient dignity in end-of-life care is centred around the principle of control (of oneself, one's death and one's emotions). The strategies required for patients to preserve their dignity can be somewhat incompatible with the dynamics and objectives of healthcare professionals who work in emergency departments.Impact statementThe dignity of patients with advanced illness who attend emergency departments is a relevant issue that merits being addressed from the patients' perspective. Participants have identified that dignity is a way of being and behaving in the face of illness. Emergency departments need to respect end-of-life patients' desires by supporting and accompanying them, avoiding therapeutic obstinacy. We recommend care to be centred on patients' well-being, to respect their autonomy and decision-making processes, and to allow prompt referrals to palliative care services.Patient or public contributionManagers from the Emergency Departments participated in the study design and patients' recruitment. Patients' relatives were informed about the study's aim, and they contributed to the development of the interview protocol.

Project description:Background'Most patients want to die at home' is a familiar statement in palliative care. The rate of home deaths is therefore often used as a success criterion. However, providing palliative care and enabling patients to die at home in rural and remote areas may be challenging due to limited health care resources and geographical factors. In this study we explored health care professionals' experiences and reflections on providing palliative care to patients at the end of life in rural Northern Norway.MethodsThis is a qualitative focus group and interview study in rural Northern Norway including 52 health care professionals. Five uni-professional focus group discussions were followed by five interprofessional focus group discussions and six individual interviews. Transcripts were analysed thematically.ResultsHealth care professionals did their utmost to fulfil patients' wishes to die at home. They described pros and cons of providing palliative care in rural communities, especially their dual roles as health care professionals and neighbours, friends or even relatives of patients. Continuity and carers' important contributions were underlined. When home death was considered difficult or impossible, nurses expressed a pragmatic attitude, and the concept of home was extended to include 'home place' in the form of local health care facilities.ConclusionsProviding palliative care in patients' homes is professionally and ethically challenging, and health care professionals' dual roles in rural areas may lead to additional pressure. These factors need to be considered and addressed in discussions of the organization of care. Nurses' pragmatic attitude when transfer to a local health care facility was necessary underlines the importance of building on local knowledge and collaboration. Systematic use of advance care planning may be one way of facilitating discussions between patients, family carers and health care professionals with the aim of achieving mutual understanding of what is feasible in a rural context.

Project description:AimTo explore social and healthcare professionals' experiences of end-of-life (EOL) care planning and documentation in palliative care.DesignA qualitative study with narrative methodology.MethodsA narrative method with interviews was used. Data were collected from purposively selected registered nurses (n = 18), practical nurses (n = 5), social workers (n = 5) and physicians (n = 5) working in palliative care unit in five hospitals in three hospital districts. Content analysis within narrative methodologies was undertaken.ResultsTwo main categories - patient-oriented EOL care planning and multi-professional EOL care planning documentation- were formed. Patient-oriented EOL care planning included treatment goals planning, disease treatment planning and EOL care setting planning. Multi-professional EOL care planning documentation included healthcare professionals' and social professionals' perspectives. Healthcare professionals' perspectives on EOL care planning documentation included benefits of structured documentation and poor support of electronic health record (EHR) for documentation. Social professionals' perspective on EOL care planning documentation included usefulness of multi-professional documentation and externality of social professionals in multi-professional documentation.ConclusionThe results of this interdisciplinary study demonstrated a gap between what healthcare professionals consider important in Advance Care Planning (ACP), that is, proactive, patient-oriented and multi-professional EOL care planning and the ability to access and document this in a useful and accessible way in the EHR.Relevance to clinical practiceKnowledge of the patient-centered EOL care planning and multi-professional documentation processes and their challenges are prerequisites for documentation to be supported by technology.Reporting methodThe Consolidated Criteria for Reporting Qualitative Research checklist was followed.Patient or public contributionNo patient or public contribution.

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Being Heard: A Qualitative Study of Lithuanian Health Care Professionals' Perceptions of Dignity at the End-of-Life.

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