Palliative Care and Social Practice最新文献

Objective: Bereavement support is recommended in specialised palliative care, but it is often underdeveloped. This study assessed palliative care professionals' (PCPs') skills in family care, their attitudes towards evidence-based practices, and their perceptions of a new, evidence-based bereavement care guidance before its implementation.

Methods: A cross-sectional study was conducted between September and December 2023 in specialised palliative care services in two Swiss hospitals. Seven validated instruments were used to assess PCPs' skills in family care (FNPS, EPCS, and ICS-Nurse), attitudes towards evidence-based practices (EBP-B), and perception of a newly developed, evidence-based bereavement care guidance (acceptability AIM, appropriateness IAM, feasibility FIM). The data were analysed using descriptive and nonparametric methods.

Results: The 39 participants (response 63%; 28 nurses, 6 physicians, 5 others) rated their skills in family care as high (median ⩾75% of scale range) and had an open attitude towards evidence-based practices (median 64%). They perceived the bereavement care guidance as highly acceptable and appropriate (median 75%) and rather feasible (median 68%). A more favourable attitude towards evidence-based practices was associated with higher perceived acceptability (Spearman's rho, p = 0.038), appropriateness (Spearman's rho, p = 0.029), and feasibility (Spearman's rho, p = 0.0019) of the guidance. Acceptability, appropriateness, and self-assessed skills (FNPS) depended on the local context (Mann-Whitney U test, p ⩽ 0.022).

Conclusion: This study shows that PCPs rate their skills in working with families at the end of life as high and perceive evidence-based bereavement care as implementable. An open attitude towards evidence-based practices supports more favourable perceptions of new bereavement care guidance before its implementation.

In Ghana, death and dying are not simply biomedical endpoints but are deeply rooted in cultural, spiritual, and communal ideologies. These beliefs shape how individuals and families perceive terminal illness, respond to end-of-life (EoL) trajectories, and interact with palliative care (PC) services. Unlike Western medical models that prioritize institutionalized and medicalized death, the Ghanaian perspective is influenced by communalism, ancestral continuity, and religious doctrines that emphasize divine healing and spiritual deliverance. This commentary examines how Ghanaian cultural norms, particularly the conception of good and bad death, the taboo surrounding discussions of dying, and the centrality of family in care decision-making, create both opportunities and challenges for PC and EoL care delivery. While spiritual beliefs offer coping mechanisms that foster resilience, they may also foster unrealistic expectations and delay the initiation of PC services, thereby undermining symptom management and psychosocial support. At the same time, the family's pivotal role in caregiving, decision-making, and bereavement provides a strong foundation for culturally sensitive PC models. The paper calls for healthcare providers and policymakers to develop family-centered and culturally congruent care frameworks, invest in community-based education to destigmatize PC, and integrate bereavement care into the continuum of support. Training providers in culturally competent communication and embedding PC into national health policy and curricula are also recommended.

Background: Despite high mortality rates in long-term care (LTC), LTC homes continue to struggle to implement a palliative approach to care.

Objectives: The objective of this research was to implement and evaluate the Strengthening a Palliative Approach in Long-Term Care (SPA-LTC; www.spaltc.ca) program. Specifically, we explored its feasibility, acceptability, and preliminary effects on resident comfort, use of emergency department at end-of-life (EOL), and location of resident death.

Design: This study used an explanatory mixed method design in four LTC homes; one in each of four provinces (Ontario, Manitoba, Saskatchewan, Alberta) in Canada to assess acceptability, feasibility, and preliminary effects of the program.

Methods: Quantitative and qualitative data were collected whereby the qualitative component was used to help explain or elaborate on the main quantitative components.

Results: Of the 102 participating residents, 74.5% (76/102) had a Palliative Care Conference (PCC). However, of those who died, only 68.8% of them had a PCC. Rates of hospital use were reduced for study participants in terms of emergency department visits at EOL (relative risk reduction (RRR): 46%; 95% CI: -1.12, -0.10) and hospital deaths (RRR: 88%; 95% CI: -4.06, -1.12) compared to baseline. However, there were no significant differences in resident comfort. Family members stated that the PCCs were informative and thought that good communication was critical in providing quality care. They highlighted that close relationships and mutual respect among staff, residents, and families led to more meaningful care while the resident was alive as well as into bereavement. Staff stated that they found the SPA-LTC resources helpful and recognized the importance of having strong leadership using a Palliative Champion Team.

Conclusion: The SPA-LTC program appears to be feasible on some key activities and supports a family-centered approach to care, which relies on strong communication. Future research is needed to confirm these initial results.

Background: Non-communicable diseases are a growing public health concern in India. However, limited knowledge of community-based need for palliative care has contributed to its poor access.

Objective: To assess the community-based palliative care needs, social security access, and the economic burden on families requiring home-based palliative care.

Design: A community-based cross-sectional study.

Methods: The entire population of an urban resettlement colony was surveyed by trained field research workers to identify people requiring home-based palliative care, whose needs were confirmed by a physician trained in palliative care needs identification. Data were collected on sociodemographics, health status, disease details, access to social security schemes, and economic impact. People in need of home-based palliative care were referred for home-based care and social security guidance. Data were analyzed using R and geographically mapped with ArcGIS and Google My Maps.

Results: Out of 43,267 individuals, 0.21% (2 per 1000) required home-based palliative care. The majority were elderly males (60%), with 51.11% illiterate and 55.56% previously unemployed. Neurological disorders, primarily stroke (67.8%), were the leading cause of disability. The average Barthel Index score was 33, indicating severe dependence in nearly 49% of participants. 62.22% of families reported a negative quality of life, and 34.44% incurred debt due to illness. 73.33% had ration cards, 50% received pensions, and only 15.56% had public health insurance. The mean out-of-pocket healthcare expenditure was 58.56% of their per capita income and 11.11% of their total family income.

Conclusion: The study highlights the significant need for home-based palliative care in urban areas and the financial hardship families face. There is a need for community-based package development for palliative care service delivery followed by an evaluation of its effectiveness.

Background: Advance care planning (ACP) is not formally implemented in Tanzanian healthcare. While the burden of non-communicable diseases continues to rise, most patients present at advanced stages of illness, highlighting the urgent need for ACP to support preference-based care.

Objectives: This study aimed to explore advanced cancer patients' experiences and perceptions of ACP at a university teaching hospital in Northern Tanzania. Findings may inform the contextual relevance and acceptability of ACP tools in low-resource settings.

Methods: This qualitative study employed individual in-depth interviews with eight patients diagnosed with advanced cancer at Kilimanjaro Christian Medical Centre. Participants received a translated version of the Five Wishes document to read and discuss with their families at home prior to the interviews. A phenomenological approach guided the data collection and analysis. Interviews were conducted in Swahili, transcribed verbatim, translated into English, and thematically analyzed using an inductive coding process by two researchers.

Results: Four key themes emerged: (1) nature of acceptance, (2) challenges to uptake and utilization of ACP, (3) modality and timing of conversations, and (4) strategies for effective integration into clinical care. While initial hesitation was common, participants generally found ACP relevant and valuable for family harmony, future preparation, and quality of life.

Conclusion: Despite limited awareness and sociocultural taboos around death, ACP was viewed as meaningful by patients with advanced illness. Further studies are needed to evaluate culturally appropriate adaptations and implementation strategies for ACP in the Tanzanian context.

This is a narrative essay about what the ocean taught me about my personal grief, lessons I, as surprisingly as it may seem, never learned through advanced training in bereavement support.

As rates of dementia increase, the need for care is clear. Understanding what this looks like and how people might orientate the narratives and practices of care against a universally relatable version of success is less clear cut yet seems crucial if we are to progress towards an ideal of care that allows for a 'good' or 'dignified' death with palliative care. With this as a central focus, the paper examines the orientating principles that govern the current approach to dementia care. We map the evolution in academic theory from deficit-based models of care that identify impairments as a means to building resources to counter them, towards capacity-oriented approaches that focus on accommodating the new experiences that dementia brings. We describe how these frameworks are predominantly orientated towards early dementia, where they work to support people to live in an active and socially productive way, and how tensions arise when they are transposed to the end-of-life where decline and dependency are the dominant experience. Our analysis suggests that the current theoretical approaches to dementia care need to be thought of as dialectical in relation to the lived experiences of decline, dependency and loss. We argue that entertaining such a dialectic can offer insights into how the approach to end-of-life care in dementia might accommodate the presence of loss, tension and paradox in such a way that does not preclude success whilst offering wider social value. We conclude that further interventions that respond to the scale of need will only add further tension without first having some vision of where value might lie. Where conventionally dementia has been viewed through the reductionist lens of being either a biological or social challenge to which there should be a matching solution, it is perhaps more useful to look at it from the inside out, to learn the lessons that dementia and its associated vulnerabilities may hold for humanity. This, we suggest, may offer a route to knowledge progression in the field.

Terminally ill individuals often grapple with various psychological challenges as they face their mortality. While traditional funerals provide solace to the bereaved, living funerals have emerged as a distinct opportunity for both the patient and their loved ones to socially participate in the farewell. This case report highlights the impact on the psychological well-being and sense of closure for Ms. T, a Singaporean patient with terminal ovarian cancer, who hosted her own living funeral. Ms. T was receiving home hospice care. Her symptoms (including pain, discomfort, insomnia, nausea, fatigue, and shortness of breath) have limited her from social connection; something that she values and emphasized prior to illness. After discussing with Ms. T about her values and end-of-life care preferences, a living funeral was arranged, where she invited friends and family to attend at her home to connect with her and to create memories. At the session, Ms. T became more energetic and was described as 'the life of the party'. The social experience of holding a Living Funeral provided motivation and sustainability to her overall well-being. Moreover, there was an increase in her social circle contacting her to keep in touch. The living funeral is aligned with concepts related to life review. The patient, as host of the living funeral, was able to witness the impact of their life on others, reinforcing her ego integrity and psychological resilience at her final stage of life. The patient expressed a sense of 'closure and completeness', having 'reconnected with friends and family' by 'clarifying their relationships' and 'expressing love for each other'. This intervention also highlighted the impact of addressing social connections and relationships between patients and their loved ones. Further examination could highlight the benefits, challenges, and underlying constructs of the Living Funeral.