Palliative Care and Social Practice最新文献

Background: Whenever possible, a person should die where they feel it is the right place to be. There is substantial global variation in home death percentages but it is unclear whether these differences reflect preferences, and there are major limitations in how the place of death is classified and compared across countries.

Objectives: EOLinPLACE is an international interdisciplinary research project funded by the European Research Council aiming to create a solid base for a ground-breaking international classification tool that will enable the mapping of preferred and actual places towards death.

Design: Mixed-methods observational research.

Methods and analysis: We combine classic methods of developing health classifications with a bottom-up participatory research approach, working with international organizations representing patients and informal carers [International Alliance of Patients' Organizations (IAPO) and Eurocarers]. First, we will conduct an international comparative analysis of existing classification systems and routinely collected death certificate data on place of death. Secondly, we will conduct a mixed-methods study (ethnography followed by longitudinal quantitative study) in four countries (the Netherlands, Portugal, Uganda and the United States), to compare the preferences and experiences of patients with life-threatening conditions and their families. Thirdly, based on the generated evidence, we will build a contemporary classification of dying places; assess its content validity through focus groups with patients, carers and other stakeholders; and evaluate it in a psychometric study to examine construct validity, reliability, responsiveness, data quality and interpretability.

Ethics: Approved by the ethics committee of the University of Coimbra, Faculty of Medicine (CE-068-2022) and committees in each of the participating countries.

Discussion: The findings will provide a deeper understanding of the diversity in individual end-of-life pathways. They will enable key developments such as measurement of progress towards achievement of preferences when care can be planned. The project will open new directions in how to care for the dying.

Trial registration: Research Registry UIN 9213.

Background: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of this pilot study was to assess the feasibility and relevance of the Carers' Alert Thermometer (CAT) in home-based care, from the perspective of MND family caregivers. The tool provides a formal structure to facilitate discussions with caregivers to enable needs to be addressed.

Methods: This mixed-method study was conducted in Western Australia (2020-2021). Forty-one caregivers and five MND Advisors participated in trialling the CAT intervention which consisted of two encounters with Advisors (6-8 weeks apart) to identify and address support needs through action plans. Caregivers' feedback was obtained via telephone interviews and a thematic analysis was undertaken.

Results: Thirty caregivers completed two CAT assessments. Caregivers identified support priorities of managing their feelings and worries, providing emotional or spiritual care, information about the person's condition and how their care needs might change. Seventeen caregivers were interviewed and found that this assessment process adequately addressed their needs and it should be continued, it brought the focus onto them to clarify problems and work through solutions. The improvements that were suggested by them, including better information/education in palliative care, led to the development of an online support/information toolkit, which served to empower caregivers and staff by accessing relevant information and resources.

Conclusions: The CAT demonstrated utility for triaging caregivers most in need of additional support and those whom signposting to additional information and self-directed access to support was most appropriate. For any tool to become an integrated part of care, service provider support is key for implementation, allowing for the time resource required and an appropriate education and support structure. MND Associations have an important role in building stronger partnerships with supportive community networks, through compassionate communities models of care, to address the identified needs of MND families in a more sustainable and wholistic manner. Needs assessment is a means towards building this capacity between formal and informal networks.

Background: Groote Schuur Hospital is a large Academic Hospital in South Africa that is in the process of integrating palliative care (PC) via a vertical nurse-led doctor-supported (VNLDS) service that was initially established to deliver clinical care. PC integration should occur across multiple dimensions and may result in variable degrees of integration between levels of the healthcare system. This research evaluates the VNLDS through a theory-driven evaluation to describe how the service affected integration.

Methods: A mixed-method sequential design consisting of a narrative literature review on the theory of integration and PC, retrospective quantitative data from a PC service delivery database, qualitative data from semi-structured interviews and document analyses. It was structured in three phases which assisted in confirming and expanding the data. Statistical analyses, deductive thematic coding and documentary analyses were conducted according to the conceptual framework of PC integration.

Results: The PC integration process was facilitated in the following ways: (i) the service provided good clinical PC; (ii) it was able to integrate on a professional level into specific diseases, such as cancer but not in all diseases; (iii) developing organizational structures within the service and (iv) the observed benefit of good clinical care increased the value stakeholders assigned to PC, thereby driving the adoption of PC. However, there are still clinicians who do not refer to PC services. This gap in referral may be grounded in assumptions and misconceptions about PC, especially at the organizational level.

Discussion: Observed PC service delivery is core to integrating PC across the healthcare system because it challenges normative barriers. However, the VNLDS could not achieve integration in leadership and governance, education and hospital-wide guidelines and policies. Whole system integration, foregrounding organizational commitment to PC excellence, is core to integrating PC.

Conclusion: The VNLDS service has effectively linked PC in specific disease profiles and normalized the PC approach where healthcare workers observed the service. These integrational gaps may be grounded in assumptions and misconceptions about PC, especially at the organizational level.

Although there are known disparities in neonatal and perinatal deaths across cultural groups, less is known about how cultural diversity impacts neonatal palliative care. This article critically reviews available literature and sets out key questions that need to be addressed to enhance neonatal palliative care provision for culturally diverse families. We begin by critically reviewing the challenges to recording, categorizing and understanding data which need to be addressed to enable a true reflection of the health disparities in neonatal mortality. We then consider whose voices frame the current neonatal palliative care agenda, and, importantly, whose perspectives are missing; what this means in terms of limiting current understanding and how the inclusion of diverse perspectives can potentially help address current inequities in service provision. Utilizing these insights, we make recommendations towards setting a research agenda, including key areas for future enquiry and methodological and practice-based considerations.

Background: Palliative care (PC) has been integrated to a limited extent in the South African healthcare system. Contextual factors may be a pivotal influence in this integration.

Objectives: This study aims to explore contextual factors that are possibly influencing the integration or lack thereof in an academic teaching hospital (ATH).

Design: A mixed-method study was conducted in a large ATH in South Africa.

Methods: The mixed methods were conducted in parallel and then merged. Findings were integrated to describe the contextual factors influencing PC integration, to develop a timeline of implementation and assess the probable influence of context on the integration process. The mixed-methods phases included a narrative review of published literature related to health systems, integration of health interventions and PC in teaching hospital settings; followed by interviews, documentary and routine data analyses. Semi-structured interviews with purposively sampled participants provided the qualitative data. Primary national, provincial and organizational documents expanded the contextual phenomena and corroborated findings. Routine hospital admission and mortality data was statistically analysed to expand further and corroborate findings. All qualitative data was thematically analysed using deductive coding, drawing from the aspects of the contextual dimensions of integration.

Results: Enabling contextual factors for local PC integration were global and local advocacy, demonstrated need, PC being a human right, as well as the personal experiences of hospital staff. Impeding factors were numerous misconceptions, PC not valued as a healthcare priority, as well as limitations in functional elements necessary for PC integration: national and regional political support, leadership at all levels and sustainable financing.

Conclusion: The normative and functional contextual aspects interplay at macro, meso and micro levels positively and negatively. How stakeholders understand and value PC directly and indirectly impacts on PC integration. Strategic interventions such as mandatory education are required to ensure PC integration. The health system is dynamic, and understanding the context in which the health system functions is core to the integration of PC. This may assist in developing integration strategies to address PC integration and the transferability of these strategies.

Background: Advance care planning (ACP) is beneficial for the quality of death (QOD). However, the effects of ACP on the QOD may vary across cultures.

Objectives: This study aimed to explore the relationship between the 15-step ACP program and the QOD among Japanese nursing home residents.

Design: A cross-sectional survey.

Methods: A cross-sectional survey was conducted among the family members of 39 nursing home residents who died between April 2017 and March 2019 by distributing the survey questionnaire by post. The survey included questions about the QOD of residents, and responses were evaluated using the Good Death Inventory (GDI) scale.

Results: Responses were obtained from 30 of the 39 bereaved families (76.9%). Data were analyzed using hierarchical clustering to determine five groups and conduct multiple comparisons. The following three domains of interest were identified: 'Dying in a favorite place', 'Good relationship with the medical staff', and 'Independence'. GDI scores were significantly higher for residents with higher ACP completion rates than for those with lower rates (p < 0.01). Residents who had taken ACP interviews had significantly higher GDI scores (p < 0.01) than those who had not taken interviews.

Conclusion: Overall, these findings suggest that systematic ACP might be related to the QOD among Japanese nursing home residents in the above mentioned three domains. Limitations of the present study were small sample size, cross-sectional survey design as opposed to a cohort survey design, and multiple biases, including the emotional instability of bereaved family members, the length of stay of the residents, the degree of dementia of the residents, and their tendency to talk about the place of death and to develop good relationships with the medical staff.

Background: Culturally appropriate communication training programs for a wide range of professions that can be used during infection epidemics are crucial for advance care planning implementation. Starting in 2018, the Japanese Ministry of Health, Labour and Welfare made a major policy change, and doctors, nurses, and social workers, and care managers were identified in the guidelines as the professions that promote advance care planning. Motivated by the lack of online programs for Japanese care managers, we proposed a new one-day program.

Objectives: This study aimed to determine the changes in the positive attitude of care managers toward dying patients compared to that of nurses, which has been used in past literature as an outcome of advance care planning educational interventions, after administering the program in Japan.

Design: Before-after comparison study.

Methods: Care managers were recruited through our website, ACP-Piece, http://plaza.umin.ac.jp/~acp-piece/piece.html. A questionnaire survey concerning positive attitudes toward dying patients was administered before and after the program on 28 August 2021. Sixty-six subjects participated in the training and 60 participants, including 14 care managers, consented to the study and completed the questionnaire surveys before and after the program.

Results: The Frommelt attitude toward care of the dying scores for care managers increased after the program (p-values, confidence intervals, and effect sizes: p < 0.001, -11.90 to -4.388, -1.252). After training, care managers had a significantly higher maximum score occurrence than nurses. Older care managers with advance care planning experience may have had a higher maximum score occurrence compared to younger, inexperienced participants.

Conclusion: To our knowledge, this is the first to demonstrate the increased positive attitude scores toward dying patients after online communication training for Japanese care managers. The limitations of this study include the lack of evidence regarding reasons for score changes, long-term score changes, and effectiveness for patients and their families.

Background: In Switzerland, continuous deep sedation until death (CDSUD) is not legally regulated and the current clinical practice guidelines on palliative sedation from 2005 do not refer to it. In contrast, in France, a neighbouring country, CDSUD is regulated by a specific law and professional guidelines. International studies show that in culturally polymorphic countries, there are variations in the end-of-life practices between linguistic regions and that a linguistic region shares many cultural characteristics with the neighbouring country.

Objectives: This study aimed to explore the attitudes of palliative care physicians from the French-speaking part of Switzerland on the question of whether CDSUD should be legally regulated in the country, and to identify their arguments. Our study also aimed to assess whether a hypothetical Swiss law on CDSUD should be similar to the current legal regulation of this practice in France.

Design: We conducted a multicentre exploratory qualitative study based on face-to-face interviews with palliative care physicians in the French-speaking part of Switzerland.

Methods: We analysed the interview transcripts using thematic analysis, combining deductive and inductive coding.

Results: Most of the participants were opposed to having specific legal regulation of CDSUD in Switzerland. Their arguments were diverse: some focused on medical and epistemological aspects of CDSUD, whereas others emphasized the legal inconvenience of having such regulation. None had the opinion that, if CDSUD were legally regulated in Switzerland, the regulation should be similar to that in France.

Conclusion: This study allows to better understand why palliative care physicians in French-speaking Switzerland may be reluctant to have legal regulation of CDSUD. Further studies covering the whole country would be needed to gain a more complete picture of Swiss palliative care physicians on this question.