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AIM: The aim of this study was to explore home care nurses' experience of enablers and barriers for planned home death in municipal health care. DESIGN: A focused ethnography. METHODS: This qualitative study collected data from 20 semi-structured interviews of home care nurses and 8.5 h of participant observations. Data was analyzed using thematic analysis. RESULTS: The findings in our study show that home care nurses consider supportive cultures, a commitment to safety and continuity when facilitating planned home deaths and family rotations to be enablers for planned home deaths. Barriers to planned home deaths involve a lack of palliative experience affecting confidence, shortages of nurses and medical supplies and night shift challenges. CONCLUSION: This study underscores the need for supportive organizational cultures, ongoing education and improved communication and staffing policies to enhance the quality of care and the experiences of patients and home care nurses, especially in the context of planned home deaths. IMPACT: The study adds knowledge to the evidence base of the practice of facilitating planned home deaths. The findings of the study could offer valuable insights for shaping future policies or devising effective implementation strategies. REPORTING METHOD: Adherence to the COREQ guidelines for reporting qualitative research was maintained. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. WHAT DOES THIS ARTICLE CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: Identified enablers and barriers provide a new perspective, contributing to a comprehensive understanding of planning home deaths. The study emphasizes supportive cultures, safety commitment and family rotations as crucial for planned home deaths, guiding healthcare professionals to adopt best practices and enhance palliative care quality.
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AIM: To investigate the decisional needs in Denmark of people with kidney failure, relatives, and health professionals when planning end-of-life care. DESIGN: A qualitative interview study. METHODS: Individual semi-structured interviews were carried out with people with kidney failure, relatives and health professionals from November 2021 to June 2022. Malterud's systematic text condensation was used to analyse transcripts. RESULTS: A total of 13 patients, 10 relatives, and 12 health professionals were interviewed. Overall, four concepts were agreed on: (1) Talking about end of life is difficult, (2) Patients and relatives need more knowledge and information, (3) Health professionals need more tools and training, and (4) Experiencing busyness as a barrier to conversations about end of life. CONCLUSION: People with kidney failure, relatives, and health professionals shared certain decisional needs while also having some different decisional needs about end-of-life care. To meet these various needs, end-of-life conversations should be systematic and organized according to the patients' needs and wishes. IMPACT: Non-systematic end-of-life care decision-making processes limit patients' involvement. Patients and relatives need more knowledge about end-of-life care, and health professionals need more competences and time to discuss decisional needs. A shared decision-making intervention for people with kidney failure when making end-of-life care decisions will be developed. REPORTING METHOD: This empirical qualitative research is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. PATIENT OR PUBLIC CONTRIBUTION: Patients, relatives, and health professionals have been involved throughout the research process as part of the research team and advisory board. The patients are people with kidney failure and the relatives are relatives of a person with kidney failure. For this study, the advisory board has particularly contributed to the validation of the invitation letter for participation, the interview guides and the preparation of the manuscript.
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Tomada de Decisões , Família , Pessoal de Saúde , Pesquisa Qualitativa , Assistência Terminal , Humanos , Masculino , Assistência Terminal/psicologia , Feminino , Pessoa de Meia-Idade , Família/psicologia , Idoso , Dinamarca , Pessoal de Saúde/psicologia , Adulto , Idoso de 80 Anos ou mais , Insuficiência Renal/terapia , Insuficiência Renal/psicologiaRESUMO
AIM: This study aimed to estimate the proportion of acute care nurses witnessing end-of-life dreams and visions or having these reported by a patient or relative, and to canvass their related attitudes and beliefs. DESIGN: A cross-sectional survey study was conducted from February 2023 to May 2023. SETTING/PARTICIPANTS: Participants were medical and surgical nurses from a 200-bed acute care hospital in metropolitan Australia. RESULTS: Fifty-seven nurses participated from a workforce of 169 (34% response rate), of whom 35 (61%) reported they had encountered end-of-life dreams and visions. The nature of end-of-life dreams and visions encountered was similar to those reported in previous studies by patients and clinicians. Nurses generally held positive attitudes towards end-of-life dreams and visions but identified an unmet need for education and training on this aspect of end-of-life care. CONCLUSION: Our results suggest that nurses in acute care encounter end-of-life dreams and visions in a similar proportion to oncology and long-term care but lower than in palliative care settings. Education and training regarding end-of-life dreams and visions are needed to ensure the provision of comprehensive, patient-centred end-of-life care. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. IMPACT: Research in sub-acute and long-term care settings suggests that end-of-life dreams and visions are a common accompaniment to the dying process. No research has yet focused on the acute care setting, despite this being the place of death for the majority of people in most high-income countries. This study demonstrates that acute care nurses encounter end-of-life dreams and visions in similar proportions to oncology and long-term care nurses but lower than palliative care nurses. Acute care nurses would benefit from education and training regarding end-of-life dreams and visions to enable the provision of holistic person-centred end-of-life care. REPORTING METHOD: This study was reported using the STROBE Checklist for cross-sectional studies.
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Atitude do Pessoal de Saúde , Recursos Humanos de Enfermagem Hospitalar , Assistência Terminal , Humanos , Estudos Transversais , Assistência Terminal/psicologia , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Recursos Humanos de Enfermagem Hospitalar/psicologia , Recursos Humanos de Enfermagem Hospitalar/estatística & dados numéricos , Sonhos/psicologia , Inquéritos e Questionários , Relações Enfermeiro-Paciente , AustráliaRESUMO
AIM: To synthesise nurses' and physicians' experiences with withdrawing life-sustaining treatment in an intensive care unit. DESIGN: The chosen methodology is thematic synthesis. The Preferred Reporting Items for Systematic Review and Meta-Analyses and Enhancing Transparency are used in Reporting the Synthesis of Qualitative Research Statement. METHODS AND DATA SOURCES: A systematic search is conducted in APA PsycINFO, CINAHL Plus, EMBASE, PubMed and Web of Science following the inclusion and exclusion criteria in April 2023. Two reviewers independently screened and extracted the qualitative data. Subsequently, data analysis was conducted using thematic analysis of qualitative research. This study was not registered with any review registry due to the irrelevance of the data to health-related outcomes. RESULTS: From the 16 articles, 267 quotes were extracted and analysed. The findings of the study revealed five analytical themes: (1) tensions between interdependent collaboration and hierarchical roles; (2) tensions between dignified dying or therapeutic perspectives; (3) family members' reflections of patient's wishes; (4) tensions in family members' positions; and (5) double-sidedness of distress. CONCLUSION: This study contributes to nursing knowledge by providing a more nuanced understanding of this complex phenomenon of withdrawing life-sustaining treatment. The findings of this study have revealed significant variations globally in the practices surrounding the withdrawal of life-sustaining treatment in intensive care units, emphasising the need for further research to inform clinical practices that cater to diverse contexts. REPORTING METHOD: Enhancing Transparency are used in Reporting the Synthesis of Qualitative Research Statement (ENTREQ statement). PATIENT OR PUBLIC CONTRIBUTION: Since this study reported a potential collision between the patient's dignified dying and the family member's perceptions and interests, the family member's wishes should be carefully distinguished from the patient's quality of end of life in practice.
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Pesquisa Qualitativa , Suspensão de Tratamento , Humanos , Atitude do Pessoal de Saúde , Unidades de Terapia Intensiva , Feminino , Masculino , Adulto , Médicos/psicologiaRESUMO
AIMS AND OBJECTIVES: To assess the prognostic accuracy of the surprise question (SQ) when used by nurses working in hospital wards to determine 1-year mortality in acutely hospitalised older patients. BACKGROUND: The predictive accuracy of the SQ, when used by general nurses caring for older hospitalised patients, has not been comprehensively studied. DESIGN: A prospective cohort study. METHODS: This cohort study recruited consecutive 10,139 older patients (aged ≥65 years) who were admitted to Taipei City Hospital and were evaluated for the needs of palliative care in 2015. All patients were followed up for 12 months or until their death. The c-statistic value was calculated to indicate the predictive accuracy of the SQ and Palliative Care Screening Tool (PCST). RESULTS: Of all participants, 18.8% and 18.6% had a SQ response of 'no' and a PCST score ≥4, respectively. After controlling for other covariates, an SQ response of 'no' (adjusted hazard ratio [aHR], 2.05; 95% confidence interval [CI], 1.83-2.31) and a PCST score ≥4 (AHR = 1.50; 95% CI: 1.29-1.75) were found to be the independent predictors for patients' 12-month mortality. The C-statistic values of the SQ and the PCST at recognising patients in their last year of life were .663 and .670, respectively. Moreover, there was moderate concordance (k = .44) between the SQ and the PCST in predicting 12-month mortality. CONCLUSIONS: SQ response of 'no' and a PCST score ≥4 were independent predictors of 12-month mortality in older patients. RELEVANCE TO CLINICAL PRACTICE: The SQ, when used by nurses working in hospital wards, is effective in identifying older patients nearing the end of life, as well as in providing advance care planning for patients. PATIENT OR PUBLIC CONTRIBUTION: Patients' palliative care needs at admission were assessed by general nurses using the SQ and PCST.
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AIMS: To investigate the level of adoption of evidence-based family engagement and support during end-of-life cancer care and subsequent bereavement and its contextual facilitators and barriers from health professionals' perspectives, and to explore differences between professional groups. DESIGN: Contextual analysis using an online cross-sectional survey. METHODS: This study was conducted in four Swiss hospitals and three home care oncology and palliative care services. Non-parametric testing was used to investigate the level of adoption and differences between nurses, physicians, occupational- and physiotherapists and psychosocial professionals (chaplains, onco-psychologists and social workers). The STROBE checklist for cross-sectional studies was followed. RESULTS: The majority of the 111 participating health professionals were nurses. Adoption was statistically significantly higher during end-of-life care than bereavement, with nurses and physicians reporting higher levels than the other professional groups. Guidance on end-of-life family care was available in about half of the cases, in contrast to a quarter for bereavement care. Self-perceived knowledge, skills and attitudes were moderate to high, with nurses and physicians reporting higher levels than others, except for general skills in working with families. Organisational structures were experienced as rather supportive, with the psychosocial group appraising the organisational context as significantly less conducive to fully implementing end-of-life and bereavement care than others, particularly during the end-of-life phase. CONCLUSION: Evidence-based family engagement and support were better adopted during end-of-life care than bereavement. Overall, nurses and physicians felt better enabled to care for families compared to other professional groups. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. PROTOCOL REGISTRATION: https://osf.io/j4kfh. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Implementation and quality improvement efforts should focus particularly on the bereavement phase and be tailored to professional groups. IMPACT: The findings show that evidence-based family engagement and support practices during end-of-life were rather well adopted in contrast to subsequent bereavement care, with nurses and physicians better enabled than other professionals to provide care. A better understanding of health professionals' contributions and roles in family care is important to build interprofessional capacity for evidence-based end-of-life and bereavement support. REPORTING METHOD: The STROBE checklist for reports of cross-sectional studies was followed (von Elm et al., 2007).
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Luto , Neoplasias , Assistência Terminal , Humanos , Estudos Transversais , Assistência Terminal/psicologia , Feminino , Masculino , Adulto , Neoplasias/enfermagem , Neoplasias/psicologia , Neoplasias/terapia , Pessoa de Meia-Idade , Pessoal de Saúde/psicologia , Família/psicologia , Inquéritos e Questionários , Suíça , Atitude do Pessoal de Saúde , Prática Clínica Baseada em EvidênciasRESUMO
Death anxiety may reduce the interaction between nurses and patients, causing nurses to focus more on the physical care needs of patients and ignore their psychosocial and spiritual needs. This study was conducted to examine nurses' death anxiety and attitudes toward caring for dying patients. The data were collected using an information form, the Thorson-Powell Death Anxiety Scale (TPDAS), and the Frommelt Attitudes Toward the Care of the Dying Scale (FATCOD). The mean TPDAS and FATCOD scores were 46.71 (14.48) and 104.97 (13.55), respectively, and it was determined that they had moderate death anxiety and positive attitudes towards the care of dying patients. Those working in intensive care and internal medicine clinics had more positive attitudes toward caring for dying patients compared with those working in surgical clinics. Those who reported having a strong faith had lower death anxiety.
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Ansiedade , Atitude do Pessoal de Saúde , Atitude Frente a Morte , Assistência Terminal , Humanos , Turquia , Feminino , Adulto , Estudos Transversais , Masculino , Ansiedade/psicologia , Assistência Terminal/psicologia , Adulto Jovem , Pessoa de Meia-Idade , Enfermeiras e Enfermeiros/psicologia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Over the years, caring has been explained in various ways, thus presenting various meanings to different people. Caring is central to nursing discipline and care ethics have always had an important place in nursing ethics discussions. In the literature, Joan Tronto's theory of ethics of care is mostly discussed at the personal level, but there are still a few studies that address its influence on caring within the nursing context, especially during the provision of end-of-life care. This study aims to explore nurses' perceptions of how their professional autonomy influences the moral dimension of end-of-life care provided to nursing home residents. METHODS: This study has a qualitative descriptive design. Data were collected by conducting five individual interviews and one focus group during a seven-month period between April 2022 and September 2022. Nine nurses employed at four Norwegian nursing homes were the participants in this study. Data were analysed by employing a qualitative deductive content analysis method. RESULTS: The content analysis generated five categories that were labelled similar to Tronto's five phases of the care process: (i) caring about, (ii) caring for, (iii) care giving, (iv) care receiving and (v) caring with. The findings revealed that nurses' autonomy more or less influences the decision-making care process at all five phases, demonstrating that the Tronto's theory contributes to greater reflectiveness around what may constitute 'good' end-of-life care. CONCLUSIONS: Tronto's care ethics is useful for understanding end-of-life care practice in nursing homes. Tronto's care ethics provides a framework for an in-depth analysis of the asymmetric relationships that may or may not exist between nurses and nursing home residents and their next-of-kin. This can help nurses see and understand the moral dimension of end-of-life care provided to nursing home residents during their final days. Moreover, it helps handle moral responsibility around end-of-life care issues, providing a more complex picture of what 'good' end-of-life care should be.
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INTRODUCTION: This study aimed to assess emergency nurses' perceived barriers toward engaging patients in serious illness conversations. METHODS: Using a mixed-method (quant + QUAL) convergent design, we pooled data on the emergency nurses who underwent the End-of-Life Nursing Education Consortium training across 33 emergency departments. Data were extracted from the End-of-Life Nursing Education Consortium post-training questionnaire, comprising a 5-item survey and 1 open-ended question. Our quantitative analysis employed a cross-sectional design to assess the proportion of emergency nurses who report that they will encounter barriers in engaging seriously ill patients in serious illness conversations in the emergency department. Our qualitative analysis used conceptual content analysis to generate themes and meaning units of the perceived barriers and possible solutions toward having serious illness conversations in the emergency department. RESULTS: A total of 2176 emergency nurses responded to the survey. Results from the quantitative analysis showed that 1473 (67.7%) emergency nurses reported that they will encounter barriers while engaging in serious illness conversations. Three thematic barriers-human factors, time constraints, and challenges in the emergency department work environment-emerged from the content analysis. Some of the subthemes included the perceived difficulty of serious illness conversations, delay in daily throughput, and lack of privacy in the emergency department. The potential solutions extracted included the need for continued training, the provision of dedicated emergency nurses to handle serious illness conversations, and the creation of dedicated spaces for serious illness conversations. DISCUSSION: Emergency nurses may encounter barriers while engaging in serious illness conversations. Institutional-level policies may be required in creating a palliative care-friendly emergency department work environment.
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Serviço Hospitalar de Emergência , Enfermeiras e Enfermeiros , Humanos , Estados Unidos , Estudos Transversais , Inquéritos e Questionários , MorteRESUMO
INTRODUCTION: Pharmacists are often not recognised as a core part of palliative care teams, despite their ideal placement to assist with the burden of medication management. OBJECTIVE: This study explored the role of pharmacists working in the rural palliative care team, in the home-based setting. DESIGN: Health care professionals working with palliative care patients in rural South Australia participated in semi-structured interviews. Data were analysed using thematic analysis. FINDINGS: Data from 20 participants identified 10 themes. Theme 1: This model of care gives patients a choice. Theme 2: The pharmacist is a trusted source of support and information. Theme 3: Patient, carer and family distress is reduced. Theme 4: Enables patients to stay at home by improving medication knowledge and decreasing burden; 4.1-Patient, carer and family's understanding about medication management is improved, 4.2-Patient, carer and family travel is decreased, 4.3-Burden associated with getting to the doctor is decreased. Theme 5: Communication between all parties is enhanced; 5.1-Enhanced communication between the patient and health care team, 5.2-Enhanced communication within the health care team. Theme 6: Patient, carer and family burden of coordinating prescriptions and medications is reduced. Theme 7: Benefits health care professionals by improving medication knowledge, reducing workload and stress; 7.1-Understanding about medications and their management is improved, 7.2-Workload is reduced, 7.3-Work-related stress is reduced. Theme 8: The disparity of care between rural and urban patients is reduced. Theme 9: Helps to address rural workforce shortages. Theme 10: Challenges of this model of care; 10.1-A need for greater pharmacist capacity to meet demand, 10.2-A need for increased and sustained funding for the pharmacist role, 10.3-Large amount of travel to get to patients. CONCLUSION: Rural health care professionals are supportive of pharmacists working as part of the palliative care team in home-based settings and identified many benefits of this model of care.
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Serviços de Assistência Domiciliar , Cuidados Paliativos , Farmacêuticos , Papel Profissional , Pesquisa Qualitativa , Serviços de Saúde Rural , Humanos , Cuidados Paliativos/organização & administração , Farmacêuticos/psicologia , Serviços de Assistência Domiciliar/organização & administração , Serviços de Saúde Rural/organização & administração , Feminino , Masculino , Austrália do Sul , Adulto , Pessoa de Meia-Idade , Pessoal de Saúde/psicologia , Atitude do Pessoal de Saúde , População Rural , Entrevistas como AssuntoRESUMO
The Supreme Court (SC) verdict of 2023 has been welcomed by the medical community in India by those who treat patients with terminal or advanced illnesses. The earlier verdict of the apex court in 2018 was ground-breaking in allowing for advanced directives (ADs) by patients in terms of their preferences at the end of life. However, it was an impractical and lengthy process in the Indian context. The recent verdict has simplified the process of withdrawal of life support, making it more practical. The authority to withdraw life support in dying patients is now also with the treating physician, the hospital, the primary medical board, and the secondary board. This article examines ethical issues related to the specifics of the judgment with respect to those who do not have ADs in India. The present article emphasizes the need for self-regulation, credentialing, and continuing medical education in critical care and palliative medicine. In the absence of these, who will guard the guardians? How to cite this article: Menon MR. Ethics and Medicolegal Aspects of Withdrawal of Treatment in Critical Care Patients without Advanced Directives in India: Who will Guard the Guardians Themselves? Indian J Crit Care Med 2024;28(1):15-17.
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BACKGROUND: Conscientious objection in nursing has been a topic of much discussion in recent years. Healthcare providers' conscientious objection has been included in Greek legislation. However, little is known about the real experiences of nurses who want to apply conscientious objections in their practice. This study aimed to contribute to filling that gap. METHODS: This qualitative study was conducted with eighteen experienced female nurses. Data were collected through semi-structured in-depth qualitative interviews conducted with purposively selected nurses during the period from October 2019 to January 2020. Interviews were transcribed verbatim and analysed thematically. The ethical principles of anonymity, voluntary participation and confidentiality were considered. RESULTS: Eight major themes and seven subthemes emerged from the thematic data analysis. Oppressive behaviors in the workplace and subservient interactions between nurses and physicians, suboptimal communication and inadequate support of nurses, perceived ineffectiveness of nurses' conscientious objections, missing legal protection against job insecurity, provision of care labeled 'futile', nurses' false knowledge and perceptions on medical situations related to conscientious objections, nurses' fears of isolation bullying and negative gossip in the workplace and a trivial amount of nurses' involvement in medical decisions emerged as barriers to nurses raising conscientious objection. Furthermore, from data analysis, it emerged that some nurses had false knowledge and perceptions on medical situations related to conscientious objections, some nurses experienced mild uncertainty distress about their ethical concerns, nurses considered their remote contribution as participation that can give rise to conscientious objection, a collective conscientious objection raised by nurses might have increased chances of being effective, and upbringing, childhood experiences, education and religion are factors shaping the nurses' core values. CONCLUSION: A total of fifteen themes and subthemes emerged from this study. Most of the findings of this study were previously unknown or undervalued and might be helpful to inform nurses and nursing managers or leaders as well as healthcare policy makers. The results of this study might contribute to addressing the need for creating ethically sensitive health care services and ensuring nurses' moral integrity and high quality of patient care.
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BACKGROUND: The Abbey Pain Scale (APS), an observational scale used to assess pain in people with end-stage dementia, is also widely used in Sweden to assess pain in patients with advanced cancer. It is unclear whether the APS is appropriate in this context. This study aims to explore physicians' and nurses' experiences of using a Swedish translation of the APS (the APS-SE) in people with advanced cancer. METHODS: Conventional qualitative content analysis was used to analyse interviews with physicians (n = 6) and nurses (n = 6) working in oncology and specialised palliative care about their experiences of using the APS-SE. RESULTS: Three categories were created: fills a need, not always on target, and does not fully suit the clinical situation. Participants reported that although the APS-SE provides support in a challenging situation, it sometimes misses the mark: it does not distinguish well between pain and other types of suffering and its pain score tends not to reflect professionals' intuitive perceptions of patients' suffering. Some parts of the APS-SE were not considered useful, and others were perceived as ethically questionable. CONCLUSION: Health professionals greatly need an observational pain assessment tool for people with advanced cancer. The APS-SE is helpful in this context, but participants did not perceive it as ideal. Its problems seem inherent to the original APS rather than related to its translation from English to Swedish. Further research is needed to provide a more suitable pain assessment tool for patients with advanced cancer.
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BACKGROUND: End-of-life (EOL) discussions for organ-failure patients with family caregivers are important factors for successful EOL care. However, identifying the appropriate time to initiate these discussions is difficult owing to the unpredictability of the disease trajectory. No practical tools or clinical indicators currently exist that can help identify non-cancer patients receiving home care who need EOL discussions. METHODS: The survey was conducted from February 2020 to June 2021. To identify the appropriate time at which to initiate EOL discussions for patients with organ failure and their caregivers, we determined the time when home-visit nurses initiated EOL discussions. We interviewed 19 home-visit nurses (mean total home-visit nursing experience: 6.7 ± 5.9 years) and analyzed the data using Hsieh and Shannon's qualitative content approach. RESULTS: Three themes related to home-visit nurses' experiences of identifying the appropriate time to start EOL discussions were identified: symptomatic worsening, lack of patients' and family caregivers' EOL awareness, and decline in activities of daily living. CONCLUSIONS: It is necessary to develop a tool that will enable home-visit nurses to implement EOL discussions at the appropriate time.
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BACKGROUND: Education in palliative care for undergraduate nursing students is important for the competence of general nurses. Newly graduated nurses have reported challenges in coping with their own emotions when encountering dying persons. They express a wish for more education before they graduate, particularly in psychosocial and existential areas, such as having difficult conversations and supporting grieving persons. Despite awareness of the importance of palliative care education for nurses, there is a lack of knowledge on how to effectively convey this knowledge to students. The aim of the present study was to explore how teaching to prepare undergraduate nursing students for palliative care practice is conducted in Sweden. METHODS: Educators from 22 Bachelor of Science nursing programmes in Sweden were interviewed about how they conducted palliative care education, with a focus on teaching situations that have been successful or less successful. The interviews were transcribed and analysed using qualitative inductive content analysis. RESULTS: Educators described that they play a crucial role in preparing undergraduate nursing students to face death and dying and to care for persons at the end of life. In the main theme, "Transforming person-centred palliative care into student-centred education", educators described how they incorporated the person-centred palliative approach into their teaching. Educators used a dynamic style of teaching where they let the students' stories form the basis in a co-constructed learning process. The educators trusted the students to be active partners in their own learning but at the same time they were prepared to use their expert knowledge and guide the students when necessary. Discussion and reflection in small groups was described as being essential for the students to achieve a deeper understanding of palliative care and to process personal emotions related to encountering dying and grieving individuals. CONCLUSIONS: This study suggests that palliative care education for undergraduate nursing students benefits from teaching in smaller groups with room for discussion and reflection. Furthermore, gains are described relating to educators taking the role of facilitators rather than traditional lecturers, being flexible and ready to address students' emotions. Educators also draw on their experiences as palliative care nurses in their teaching practices.
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BACKGROUND: Nursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and competences. Only fragmented knowledge is available concerning important fundamentals in end-of-life communication performed by nursing staff. OBJECTIVE: This review aimed to explore the fundamentals of end-of-life communication as part of advance care planning in the hospital, nursing home and home care setting, from the perspective of the nursing staff, the older person, and the family caregiver. DESIGN: Scoping review. METHODS: A literature search in PubMed, PsycINFO, CINAHL and Google (Scholar) was conducted on August 20, 2022. The search strategy followed the sequential steps as described in the Joanna Briggs Institute Manual. Peer-reviewed articles of empirical research and gray literature written in English or Dutch and published from 2010 containing fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers in the hospital nursing home or home care setting were considered eligible for review. RESULTS: Nine studies were included, and four themes were composed, reflecting 11 categories. Nursing staff attunes end-of-life communication to the values and needs of older people to approach the process in a person-centered manner. This approach requires additional fundamentals: building a relationship, assessing readiness, timing and methods to start the conversation, communication based on information needs, attention to family relationships, a professional attitude, improving communication skills, listening and non-verbal observation skills, and verbal communication skills. CONCLUSIONS: This review is the first to compile an overview of the fundamentals of end-of-life communication performed by nursing staff. Building a nursing staff-older-person relationship is the most important foundation for engaging in a person-centered end-of-life communication process. Knowing each other enables nursing staff to have a sense of older people's readiness, determine the right timing to initiate an end-of-life conversation, identify specific needs, and accurately apply (non-)verbal observation skills. end-of-life communication is not a one-time conversation, but a complex process that takes time, effort, and genuine interest in each other.
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OBJECTIVES: Our research aims to compare the perception that children in the pediatric palliative care setting have of their emotional well-being, or that expressed by the parents, with the perception held by the professionals involved in their care. METHODS: In this cross-sectional study, the emotional well-being of 30 children with a mean age of 10.8 years (standard deviation [SD] = 6.1) is evaluated. Children, or parents where necessary, evaluate their situation with a question about emotional well-being on a 0-10 visual analog scale. For each child, a health professional also rates the child's emotional status using the same scale. RESULTS: The average child's emotional well-being score provided by children or parents was 7.1 (SD = 1.6), while the average score given by health professionals was 5.6 (SD = 1.2). Children or parents graded the children's emotional well-being significantly higher than professionals (t-test = 4.6, p-value < .001). Health professionals rated the children's emotional well-being significantly lower when the disease status was progressive than when the disease was not (t-test = 2.2, p-value = .037). SIGNIFICANCE OF RESULTS: Children themselves, or their parents, report more positive evaluations of emotional well-being than health professionals. Sociodemographic and disease variables do not seem to have a direct influence on this perception, rather it is more likely that children, parents, and professionals focus on different aspects and that children or parents need to hold on to a more optimistic vision. We must emphasize that when this difference is more pronounced, it can be a warning sign that further analysis is required of the situation.
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OBJECTIVES: Advance care planning (ACP) interventions are supposed to affect patients' autonomy and family health-care outcomes positively. However, the clinical benefits of ACP actualization and associated contextual factors merit questioning. Therefore, this study explores the critical contextual and procedural factors related to ACP decision-making based on the actual situation of older patients with cancer encountering end-of-life care in Taiwan. METHODS: This retrospective qualitative secondary analysis used the Kipling method (5W1H) to explore further the critical contextual and procedural factors related to ACP decision-making processes. We applied thematic analysis and dual coding for 35 narratives, including 10 patients with cancer, 10 family caregivers, and 15 health-care staff, derived from a preliminary qualitative study regarding palliative care decision-making among patients with advanced cancer, their families, and health-care staff. RESULTS: We identified 6 domains detailing the contextual factors for ACP decision-making: (1) WHO (decision makers); (2) WHAT (discussion content); (3) WHEN (care plan for which disease stage); (4) WHERE (patient's situational location); (5) WHY (reasons underpinning the decisions); and (6) HOW (the way to form the decisions). SIGNIFICANCE OF RESULTS: Using the Kipling method to elaborate the contextual factors for ACP decision-making among older patients with cancer strengthens the understanding of complicated end-of-life care decision-making procedure. This study also demonstrates the dynamic and cultural complexity and the various factors considered during end-of-life care and future ACP discussion.
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OBJECTIVES: To assess the barriers that health-care professionals (HCPs) face in having advance care planning (ACP) conversations with patients suffering from advanced serious illnesses and to provide care consistent with patients' documented preferences. METHODS: We conducted a national survey of HCPs trained in facilitating ACP conversations in Singapore between June and July 2021. HCPs responded to hypothetical vignettes about a patient with an advanced serious illness and rated the importance of barriers (HCP-, patient-, and caregiver-related) in (i) conducting and documenting ACP conversations and (ii) providing care consistent with documented preferences. RESULTS: Nine hundred eleven HCPs trained in facilitating ACP conversations responded to the survey; 57% of them had not facilitated any in the last 1 year. HCP factors were reported as the topmost barriers to facilitating ACP. These included lack of allocated time to have ACP conversations and ACP facilitation being time-consuming. Patient's refusal to engage in ACP conversations and family experiencing difficulty in accepting patient's poor prognosis were the topmost patient- and caregiver-related factors. Non-physician HCPs were more likely than physicians to report being fearful of upsetting the patient/family and lack of confidence in facilitating ACP conversations. About 70% of the physicians perceived caregiver factors (surrogate wanting a different course of treatment and family caregivers being conflicted about patients' care) as barriers to providing care consistent with preferences. SIGNIFICANCE OF RESULTS: Study findings suggest that ACP conversations be simplified, ACP training framework be improved, awareness regarding ACP among patients, caregivers, and general public be increased, and ACP be made widely accessible.
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BACKGROUND: End-stage renal disease (ESRD) is the final stage of chronic kidney disease. Yet dialysis is not suitable for all ESRD patients. Moreover, while shared decision-making (SDM) is the preferred model for making medical decisions, little is known about SDM between nephrology nurses and ESRD patients in Israel. RESEARCH OBJECTIVE: Assessing the views, attitudes, practices, and ethical dilemmas of nephrology nurses in Israel regarding SDM with ESRD patients. METHODS: Using the descriptive quantitative approach, questionnaires were completed by 444 nephrology nurses in Israel. In addition to conducting descriptive statistics, t-tests for independent samples, f-tests for analysis of variance, and both tests for independence were also performed. ETHICAL CONSIDERATIONS: The research aims, expected advantages and risks have been explained to respondents before completing the questionnaire to secure informed consent. Anonymity and confidentiality were ensured throughout the study. The study was approved by the Research Ethics Committee at the University of Haifa (Approval # 411/21). RESULTS: About one-third (30%-36.5%) of nurses reported discussing quality of life issues with ESRD patients, asking about their advance directives/power of attorney, exploring cultural/religious beliefs in end-of-life care, and ask about their preferred place of death. Nurses who convey high levels of patient-centered care (68.9%, p<0.0001), have high end-of-life training (76.2%, p<0.0001), and report cooperating with interdisciplinary teams (63.8%, p = 0.0415), also reported higher SDM practices than others. Nurses who refer less patients to palliative care (70%, p<0.0001) reported higher involvement in SDM compared to other nurses. CONCLUSIONS: Nephrology nurses in Israel do not tend to implement the SDM model, despite its potential for improving quality of life for ESRD patients and their families and increasing conservative care options. Policy makers and educators in Israel should develop and implement training programs and support in the workplace, to enhance SDM between nephrology nurses and ESRD patients.