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Relationship Between Palliative Care and Location of Death Among People With Opioid Use Disorder: A Retrospective Cohort Study. 阿片类药物使用障碍患者姑息治疗与死亡地点的关系:一项回顾性队列研究
IF 1.7 4区 医学 Q4 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-11-12 DOI: 10.1177/08258597251392965
Lisa M Boucher, Jenny Lau, Mary M Scott, Karl Everett, Tara Gomes, Peter Tanuseputro, Sheila Jennings, Rebecca Bagnarol, Camilla Zimmermann, Andrew McLeod, Sarina R Isenberg

ObjectivePeople with opioid use disorder are at high risk of serious comorbidities, more likely to die from all major diseases, and their end-of-life needs remain poorly understood. We aimed to examine the relationship between receipt of palliative care across settings and the location of death among individuals with opioid use disorder.MethodsWe employed a population-level cohort study using health administrative databases. Our cohort was adults with opioid use disorder in Ontario, Canada, who died between July 2015 and December 2021 (N = 11,200). Our exposure was receipt of palliative care within three years prior to the last 90 days of life (inpatient-only, outpatient, or none (reference)). Our primary outcome was the location of death in the community versus institution (reference).ResultsAmong our decedent cohort, 5636 (50.3%) received no palliative care before their last 90 days of life, and among those who received it, only 1846 (33.2%) received any outpatient palliative care and 3718 (66.8%) received inpatient-only palliative care. After covariate adjustment, receiving inpatient-only palliative care (vs no palliative care) was associated with a 6% (RR 0.94; 95% CI 0.91, 0.98) decrease in the likelihood of community death, whereas there was no relationship between outpatient palliative care and location of death.ConclusionsThe association of palliative care with the location of death for people with opioid use disorder varies by setting of care. Further research is required to understand if community deaths are aligned with preferences and whether additional factors contribute to their likelihood.

阿片类药物使用障碍患者患严重合并症的风险很高,更有可能死于所有主要疾病,而且他们的临终需求仍然知之甚少。我们的目的是研究阿片类药物使用障碍患者在不同环境中接受姑息治疗与死亡地点之间的关系。方法采用卫生管理数据库进行人群水平队列研究。我们的队列是2015年7月至2021年12月期间死亡的加拿大安大略省成人阿片类药物使用障碍患者(N = 11,200)。我们的暴露是在生命最后90天之前的三年内接受姑息治疗(仅住院,门诊或无(参考))。我们的主要结局是死亡地点是在社区还是在医院(参考)。结果5636例(50.3%)患者在生命最后90天前未接受过姑息治疗,接受姑息治疗的患者中,仅有1846例(33.2%)接受过门诊姑息治疗,3718例(66.8%)接受过住院姑息治疗。协变量调整后,接受住院姑息治疗(与不接受姑息治疗相比)与社区死亡可能性降低6% (RR 0.94; 95% CI 0.91, 0.98)相关,而门诊姑息治疗与死亡地点之间没有关系。结论姑息治疗与阿片类药物使用障碍患者死亡地点的关系因护理环境而异。需要进一步的研究来了解社区死亡是否与偏好一致,以及是否有其他因素导致了这种可能性。
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引用次数: 0
Translation, Cultural Adaptation, and Validation of the Swedish Thanatophobia Scale. 瑞典死亡恐惧症量表的翻译、文化适应和验证。
IF 1.7 4区 医学 Q4 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-11-10 DOI: 10.1177/08258597251388303
Susanna Pusa, Rebecca Baxter, Anna Sandgren, Sofia Andersson

ObjectiveThe aim of this study was to translate, culturally adapt, and validate the Swedish Thanatophobia Scale.MethodsForward and back translation, cultural adaptation, content validation, and psychometric testing were undertaken through interviews with experts and surveying of healthcare professionals.ResultsThe results from expert ratings (n = 7) for the Item Content Validity Index were calculated for scale understandability (mean, 0.90), clarity (mean, 0.91), sensitivity (mean, 0.94), and relevance (mean, 0.96). Interviews (n = 10) confirmed the importance of the scale questions and subject matter. The scale was tested among a sample of 386 participants (physicians = 104; registered nurses = 282). No significant differences were found between ratings from physicians and registered nurses. Exploratory Factor Analysis supported the unidimensionality of the scale. The Cronbach's alpha for the total scale was 0.89, indicating good internal consistency.ConclusionsThe Swedish Thanatophobia Scale appears to be a valid and reliable measure of healthcare professionals' attitudes toward caring for patients in palliative care.

目的本研究的目的是翻译,文化适应,并验证瑞典死亡恐惧症量表。方法通过专家访谈和卫生保健专业人员调查,进行前后翻译、文化适应、内容验证和心理测试。结果专家评分(n = 7)对项目内容效度指数进行量表可理解性(平均值0.90)、清晰度(平均值0.91)、敏感性(平均值0.94)和相关性(平均值0.96)的计算。访谈(n = 10)证实了量表问题和主题的重要性。该量表在386名参与者中进行了测试(医生= 104;注册护士= 282)。医师和注册护士的评分没有显著差异。探索性因子分析支持量表的单一性。总量表的Cronbach's alpha值为0.89,内部一致性较好。结论瑞典临终恐惧症量表是衡量医护人员对姑息治疗患者护理态度的有效、可靠的量表。
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引用次数: 0
Components of Grief and Bereavement Supports and Programs in Australia and New Zealand: A Rapid Scoping Review. 澳大利亚和新西兰悲痛和丧亲支持和项目的组成部分:快速范围审查。
IF 1.7 4区 医学 Q4 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-11-05 DOI: 10.1177/08258597251392312
Deborah Forsythe, Kate Davis

ObjectiveThis rapid scoping review was undertaken as part of a larger study to design a statewide operational model of grief and bereavement supports in South Australia. The aim of the review was to describe the structures, services, and components of supports offered by grief and bereavement programs in South Australia.MethodsThe review was preceded by a desktop review of gray literature and informed by the Joanna Briggs Institute methodology for scoping reviews. Databases searched included Cumulated Index in Nursing and Allied Health Literature (CINAHL), MEDLINE, PsycINFO, and PubMed. Data were extracted about specific supports, services and programs, and imported into NVivo for thematic analysis.ResultsA total of 2383 articles were retrieved, with the findings from 88 articles extracted and included. Eleven themes relating to supports for grieving and bereaved people comprised: (1) follow-up bereavement care (with health professionals); (2) counseling support; (3) bereavement coordination; (4) peer support; (5) information about grief and loss; (6) referrals and risk assessment; (7) memorial services and mementos; (8) other practical and informal emotional supports; (9) personnel; (10) staff training; and (11) staff support.ConclusionsThis review advocates for including all identified supports in comprehensive grief and bereavement care. While implementing this in full may be challenging for individual services and providers due to time and resource constraints, integrating these components at a population level should be considered. Each element plays a role in delivering holistic care, requiring the combined efforts of community action and formal service provision.

目的:这项快速范围审查是一项更大的研究的一部分,该研究旨在设计南澳大利亚州悲痛和丧亲之痛支持的全州运作模式。回顾的目的是描述南澳大利亚哀伤和丧亲计划提供的支持的结构、服务和组成部分。方法回顾之前是灰色文献的桌面回顾,并由乔安娜布里格斯研究所的范围回顾方法提供信息。检索的数据库包括护理与相关健康文献累积索引(CINAHL)、MEDLINE、PsycINFO和PubMed。提取有关具体支持、服务和项目的数据,并导入NVivo进行专题分析。结果共检索文献2383篇,提取纳入88篇。11个与支持悲伤和丧亲之人有关的主题包括:(1)后续丧亲护理(由保健专业人员提供);(2)咨询支持;(3)丧亲协调;(4)同伴支持;(五)悲痛和损失的情况;(6)转诊和风险评估;(七)追悼会和纪念品;(8)其他实际的和非正式的情感支持;(9)人员;(10)员工培训;(11)人员支持。结论:本综述提倡在全面的悲痛和丧亲护理中包括所有确定的支持。虽然由于时间和资源的限制,完全实现这一点对单个服务和提供者来说可能具有挑战性,但应该考虑在人口级别集成这些组件。每个要素都在提供整体护理方面发挥作用,需要社区行动和提供正式服务的共同努力。
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引用次数: 0
Qualities of Culturally and Religiously Sensitive Practice: A Cross-Sectional Study. 文化和宗教敏感性实践的特质:一项横断面研究。
IF 1.7 4区 医学 Q4 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-01 Epub Date: 2021-11-29 DOI: 10.1177/08258597211050742
Panagiotis Pentaris, Panayiota Christodoulou

Background: Culture and religion influence lived experience and particularly dying and grieving. Research has largely focused on exploring culturally and religiously sensitive practices, but not necessarily in palliative and hospice care or across nations. Acquired knowledge from the more advanced end-of-life care systems (eg the UK) tends to be generalized to other contexts where its cultural appropriation is not tested. Aim: This study explored the different qualities, among hospice and palliative professionals in Cyprus, describing cultural competence, cultural humility, and religious literacy. Design: A cross-sectional study of 41 palliative and hospice professionals in Cyprus, with the use of a 5-point Likert style questionnaire (a = 0.898). Setting: The study took place in Cyprus and participants were recruited from across palliative and hospice care organizations, including the only hospice in Cyprus, Cyprus Association of Cancer Patients and Friends (PASYKAF), and the Cyprus Anti-Cancer Society (CACS). Results: This study found that there are four main qualities that lead to effective culturally and religiously sensitive practice-informed decision-making, respect, adaptability, and nonjudgmental practice. Conclusions: Future education and training of professionals can consider these findings to appropriate approaches in practice that fit the Cypriot end-of-life care context more effectively.

背景:文化和宗教影响着人们的生活体验,尤其是死亡和悲伤。研究主要集中在探索对文化和宗教敏感的实践上,但不一定是在姑息关怀和临终关怀中,也不一定是跨国家的。从更先进的临终关怀系统(如英国)中获得的知识往往会被推广到其他环境中,而这些环境中的文化适应性没有经过检验。目的:本研究探讨了塞浦路斯临终关怀和姑息治疗专业人员在文化能力、文化谦逊和宗教素养方面的不同素质。设计:对塞浦路斯的 41 名姑息治疗和安宁疗护专业人员进行横断面研究,采用 5 点李克特式问卷(a = 0.898)。研究地点研究在塞浦路斯进行,参与者来自各个姑息治疗和临终关怀机构,包括塞浦路斯唯一的临终关怀机构、塞浦路斯癌症患者和朋友协会(PASYKAF)以及塞浦路斯抗癌协会(CACS)。研究结果本研究发现,有效的文化和宗教敏感性实践有四个主要特质--知情决策、尊重、适应性和非评判性实践。结论未来对专业人员的教育和培训可以考虑这些发现,以便在实践中更有效地采用适合塞浦路斯临终关怀环境的方法。
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引用次数: 0
Comparison of Palliative Knowledge and Self-Efficacy Expectation of German Paramedics Between a Rural and an Urban Structured Emergency Medical Service Area. 农村和城市结构化紧急医疗服务地区德国辅助医务人员姑息治疗知识和自我效能期望的比较。
IF 1.7 4区 医学 Q4 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-01 Epub Date: 2024-02-19 DOI: 10.1177/08258597231221916
Daniel Chwallek, Adam Schweda, Martin Neukirchen, Joachim Risse, Jörg Hense, Martin Teufel, Mitra Tewes

Objective(s): Differences in the German emergency medical service (EMS) can be seen in the countryside in contrast to the city with regard to travel distances to hospitals and in the access routes of EMS-physicians. In order to investigate the success of establishment of palliative crisis cards associated with training and the rural and urban EMS structures, two urban and two rural EMS areas were compared using the Paramedic Palliative Care Test (PARPACT). Methods: The PARPACT includes test items on palliative knowledge (PK, maximum score: 15 points) and palliative self-efficacy expectations (PSE, maximum score: 18 points), as well as items on palliative attitudes in dealing with palliative care patients. We used a 4-point Likert-type scale. For data analysis, nonparametric tests (χ-test and Mann-Whitney U test) were used in addition to descriptive analysis (frequencies, means, medians, standard deviations, and ranges). Results: In total, 291 out of 750 ambulance or EMS personnel participated in the voluntary survey. Rural ambulance or EMS personnel answered the PK-questions correctly more often on average (mean: 11.19, SD: 1.85) than urban ambulance or EMS personnel (mean: 9.18, SD: 2.39; Mann-Whitney U test: U=5040.000, P=.001). In addition, ambulance or EMS personnel with the highest level of training (3-year-trained paramedics) performed better in PK (mean: 10.38, SD: 2.31) than less intensively training ambulance or EMS personnel (mean: 9.58, SD: 2.43; Mann-Whitney U-test: U=8446.500, P=.004). In terms of PSE, rural ambulance or EMS personnel also achieved higher mean PSE-scores (mean: 12.55, SD: 2.60) than urban ambulance or EMS personnel (mean: 9.77, SD: 3.41; Mann-Whitney U-test: U=5148.500, P=.001). Conclusions: Better training in the EMS is associated with improved PK compared to less qualified nonphysician EMS staff. The establishment of palliative crisis cards and the structures in the city alone do not lead to improved knowledge and PSE.

目的:德国的急救医疗服务(EMS)与城市相比,在前往医院的距离和急救医疗服务医生的接诊路线方面存在差异。为了研究建立姑息治疗危机卡的成功与否与培训、农村和城市的急救服务结构有关,我们使用辅助医务人员姑息治疗测试(PARPACT)对两个城市和两个农村的急救服务地区进行了比较。方法:PARPACT 包括姑息关怀知识(PK,最高分:15 分)和姑息关怀自我效能期望(PSE,最高分:18 分)的测试项目,以及姑息关怀病人态度的测试项目。我们采用的是李克特(Likert)式 4 点量表。在数据分析中,除了描述性分析(频率、平均值、中位数、标准差和范围)外,我们还使用了非参数检验(χ检验和曼-惠特尼U检验)。结果在 750 名救护车或急救服务人员中,共有 291 人参加了自愿调查。与城市救护车或急救人员(平均:9.18,标准差:2.39;Mann-Whitney U 检验:U=5040.000,P=.001)相比,农村救护车或急救人员回答 PK 问题的平均正确率更高(平均:11.19,标准差:1.85)。此外,受过最高级别培训的救护车或急救人员(受过 3 年培训的护理人员)在 PK 中的表现(平均值:10.38,标准差:2.31)优于受过较少培训的救护车或急救人员(平均值:9.58,标准差:2.43;Mann-Whitney U 检验:U=8446.500,P=.004)。在 PSE 方面,农村救护车或急救人员的平均 PSE 分数(平均值:12.55,标准差:2.60)也高于城市救护车或急救人员(平均值:9.77,标准差:3.41;Mann-Whitney U 检验:U=5148.500,P=.001)。结论与资质较低的非医生急救人员相比,接受过更好培训的急救人员可改善 PK。仅在城市中建立姑息危机卡和姑息危机机构并不能改善知识和 PSE。
{"title":"Comparison of Palliative Knowledge and Self-Efficacy Expectation of German Paramedics Between a Rural and an Urban Structured Emergency Medical Service Area.","authors":"Daniel Chwallek, Adam Schweda, Martin Neukirchen, Joachim Risse, Jörg Hense, Martin Teufel, Mitra Tewes","doi":"10.1177/08258597231221916","DOIUrl":"10.1177/08258597231221916","url":null,"abstract":"<p><p><b>Objective(s):</b> Differences in the German emergency medical service (EMS) can be seen in the countryside in contrast to the city with regard to travel distances to hospitals and in the access routes of EMS-physicians. In order to investigate the success of establishment of palliative crisis cards associated with training and the rural and urban EMS structures, two urban and two rural EMS areas were compared using the Paramedic Palliative Care Test (PARPACT). <b>Methods:</b> The PARPACT includes test items on palliative knowledge (PK, maximum score: 15 points) and palliative self-efficacy expectations (PSE, maximum score: 18 points), as well as items on palliative attitudes in dealing with palliative care patients. We used a 4-point Likert-type scale. For data analysis, nonparametric tests (χ-test and Mann-Whitney <i>U</i> test) were used in addition to descriptive analysis (frequencies, means, medians, standard deviations, and ranges). <b>Results:</b> In total, 291 out of 750 ambulance or EMS personnel participated in the voluntary survey. Rural ambulance or EMS personnel answered the PK-questions correctly more often on average (mean: 11.19, SD: 1.85) than urban ambulance or EMS personnel (mean: 9.18, SD: 2.39; Mann-Whitney <i>U</i> test: <i>U</i>=5040.000, <i>P</i>=.001). In addition, ambulance or EMS personnel with the highest level of training (3-year-trained paramedics) performed better in PK (mean: 10.38, SD: 2.31) than less intensively training ambulance or EMS personnel (mean: 9.58, SD: 2.43; Mann-Whitney <i>U</i>-test: <i>U</i>=8446.500, <i>P</i>=.004). In terms of PSE, rural ambulance or EMS personnel also achieved higher mean PSE-scores (mean: 12.55, SD: 2.60) than urban ambulance or EMS personnel (mean: 9.77, SD: 3.41; Mann-Whitney <i>U</i>-test: <i>U</i>=5148.500, <i>P</i>=.001). <b>Conclusions:</b> Better training in the EMS is associated with improved PK compared to less qualified nonphysician EMS staff. The establishment of palliative crisis cards and the structures in the city alone do not lead to improved knowledge and PSE.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"329-335"},"PeriodicalIF":1.7,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12318159/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139906863","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Heart of the Matter: Exploring a Veteran's Wish for Pacemaker Deactivation. 问题的核心:探索退伍军人对心脏起搏器停用的愿望。
IF 1.7 4区 医学 Q4 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-01 Epub Date: 2025-02-02 DOI: 10.1177/08258597251318069
Jordana L Meyerson, Jeffrey M Kowaleski, McKenzie R McClelland

Individuals living with serious illness might request deactivation of a cardiac implantable electronic device for a variety of reasons. Discontinuation of implantable cardiac defibrillators and pacemakers are considered to be ethically sound procedures. However, healthcare professional comfort with discontinuation of different types of devices might vary. In this case we describe a veteran's request for pacemaker deactivation and our interdisciplinary team's response to this request, including evaluation of total suffering, ethical considerations, and mood symptoms at end-of-life.

患有严重疾病的人可能会因为各种原因要求停用心脏植入式电子设备。停止使用植入式心脏除颤器和起搏器被认为是合乎伦理的。然而,医疗保健专业人员对停止使用不同类型设备的舒适度可能有所不同。在这个案例中,我们描述了一位退伍军人要求停用心脏起搏器的请求,以及我们的跨学科团队对这一请求的回应,包括对总痛苦、伦理考虑和临终时的情绪症状的评估。
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引用次数: 0
A Cross-Sectional Study of Job Satisfaction and Intention to Leave Job in Palliative Care in Croatia. 克罗地亚姑息治疗领域工作满意度和离职意向的横断面研究。
IF 1.7 4区 医学 Q4 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-01 Epub Date: 2021-12-13 DOI: 10.1177/08258597211046704
Ivana Macuka, Ivana Tucak Junaković

Purpose Stressful and demanding clinical situations may contribute to job dissatisfaction and may even contribute to an intention to leave the job among palliative care (PC) clinicians. Personal and organizational factors may influence the occupational well-being of PC clinicians as well. This study aimed to determine the predictive contribution of personal (communication skills, resilience, religiosity) and organizational (coworkers' social support, job control) factors in the explanation of PC clinicians job (dis)satisfaction and their intention to leave their job. Methods The study was conducted on a convenience sample of 122 PC clinicians of different disciplines (nurses/technicians, physicians, psychologists, spiritual counsellors/priests, social workers, physical therapists, etc). The sample mainly consisted of nurses (57%). Hierarchical and logistic regression analyses of the results obtained were applied. Results This study indicates that 53% of PC clinicians are satisfied with their daily job and 76% do not intend to leave the job. The results showed no differences in job satisfaction and intention to leave between nurses/technicians and other PC clinicians. A significant negative correlation was found between job satisfaction and intention to leave the job. Communication skills, religiosity and coworkers' social support, showed as significant predictors of job satisfaction. PC clinicians' perception of their own difficulties in communicating bad news contributed significantly to job satisfaction and intention to leave the job in palliative care. Conclusion This study suggests that job satisfaction in a palliative care setting is determined by a larger number of personal and organizational factors than the intention to leave the job. Communication skills showed indispensable for providing quality care for dying patients. Skills in communicating bad news to dying patients and their families have emerged as particularly important for PC clinicians' occupational well-being.

目的 对姑息关怀(PC)临床医生而言,压力大、要求高的临床环境可能会导致他们对工作不满意,甚至产生离职意向。个人和组织因素也可能影响姑息关怀临床医生的职业幸福感。本研究旨在确定个人因素(沟通技巧、复原力、宗教信仰)和组织因素(同事的社会支持、工作控制)对解释 PC 临床医生工作(不)满意度及其离职意向的预测作用。研究方法 本研究对不同学科(护士/技师、医生、心理学家、精神辅导员/牧师、社会工作者、理疗师等)的 122 名 PC 临床医生进行了方便抽样调查。样本主要由护士组成(57%)。对所得结果进行了层次分析和逻辑回归分析。结果 研究表明,53% 的 PC 临床医生对其日常工作感到满意,76% 的医生不打算离职。结果显示,护士/技师与其他 PC 临床医生在工作满意度和离职意向方面没有差异。工作满意度与离职意向之间存在明显的负相关。沟通技巧、宗教信仰和同事的社会支持是工作满意度的重要预测因素。姑息关怀临床医生认为自己在传达坏消息时遇到困难,这在很大程度上影响了他们的工作满意度和离职意向。结论 本研究表明,与离职意向相比,姑息关怀环境中的工作满意度由更多的个人和组织因素决定。沟通技巧是为临终病人提供优质护理所不可或缺的。向临终病人及其家属传达坏消息的技能对 PC 临床医生的职业幸福感尤为重要。
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引用次数: 0
Maya Ta Maya Ho (Love is Love): A Qualitative Study on LGBTQI+ Experiences in Hospice & Palliative Care in Nepal. Maya Ta Maya Ho(爱就是爱):关于尼泊尔 LGBTQI+ 在临终关怀和姑息治疗中的经历的定性研究。
IF 1.7 4区 医学 Q4 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-01 Epub Date: 2022-04-11 DOI: 10.1177/08258597221092896
Archit B Baskaran, Joshua Hauser

Objective(s)LGBTQI+ disparities in hospice and palliative care have been vastly underrecognized in medical practice and research. This may result in LGBTQI+ community members distrusting health care professionals, avoiding encounters due to fears of discrimination or mistreatment, and seldom disclosing their identities to health care professionals. LGBTQI+ patients often lack familial emotional and caregiver support, a central theme of hospice and palliative care - for example, older LGBTQI+ people are twice as likely as cisgender heterosexual people to live alone and four times as likely to not have children. LGBTQI+ populations are also highly intersectional; therefore, members may be further stigmatized. Blue Diamond Society is a non-governmental organization in Nepal that specializes in LGBTQI+ advocacy and patient care. Our main objective in this study was to explore Nepali LGBTQI+ patients' experiences in hospice and palliative care.Methods29 interviews were conducted with patients, health care professionals, family members, and administrators involved with Blue Diamond Society (BDS), a Nepali NGO that serves Nepal's LGBTQI+ community. Questions were developed based on open-ended questioning to abstract relevant life and health history information pertaining to experiences with BDS and palliative care. These interviews were translated and transcribed verbatim. Qualitative Content analysis was conducted to identify prevalent themes.ResultsFour themes were identified: Fear of Dying without Family; Understanding Oneself and Sense of Community; Patient as Advocate; and Intersectionality and Eliminating Reductionism.ConclusionsThis study elucidated themes inherent to the experiences of LGBTQI+ Nepali people receiving palliative and hospice care, ultimately describing the unique needs of LGBTQI+ Nepali patients in palliative and hospice care settings. In doing so, this study presents an intersectional focus on palliative and hospice care, elaborating on challenges specific to a deeply marginalized community that remains underrepresented in academia. Findings from this study describe an expanded notion of "palliation" to embody "whole-person care," that is, the palliation of social and structural pain, in addition to the more traditional conceptions of palliation as purely physical, emotional, and/or spiritual. This study also identified the importance of acknowledging and affirming the intersectional marginalization at which LGBTQI+ Nepalis live, ranging from experiences with socioeconomic status, family and communal conflict, ethnicity, race, sex, gender, sexual orientation, age, and environmental resource scarcity. In further understanding and improving upon intersectional LGBTQI+ cultural humility, this study provides opportunities for further research on cross-cultural LGBTQI+ patient needs in hospice and palliative care in a variety of resource settings.

目的:在医疗实践和研究中,LGBTQI+群体在临终关怀和姑息治疗中的差异一直未得到充分认识。这可能会导致 LGBTQI+ 群体成员不信任医护人员,因担心歧视或虐待而避免与医护人员接触,也很少向医护人员透露自己的身份。LGBTQI+ 患者往往缺乏家庭情感和照顾者的支持,而这正是临终关怀和姑息关怀的核心主题--例如,老年 LGBTQI+ 独居的可能性是同性异性恋者的两倍,没有子女的可能性是同性异性恋者的四倍。LGBTQI+ 群体还具有高度的交叉性;因此,其成员可能会受到进一步的侮辱。蓝钻协会是尼泊尔的一个非政府组织,专门从事 LGBTQI+ 的宣传和患者护理工作。本研究的主要目的是探讨尼泊尔 LGBTQI+ 患者在临终关怀和姑息治疗中的经历。方法:我们对患者、医护人员、家庭成员以及与蓝钻协会(BDS)相关的管理人员进行了 29 次访谈,蓝钻协会是尼泊尔的一个非政府组织,为尼泊尔的 LGBTQI+ 社区提供服务。我们根据开放式提问的方式设计了问题,以抽取与 BDS 和姑息关怀经历相关的生活和健康史信息。这些访谈被逐字翻译和转录。对访谈内容进行定性分析,以确定普遍存在的主题:结果:确定了四个主题:结果:确定了四个主题:害怕在没有家人陪伴的情况下死亡;了解自我和社区感;患者作为倡导者;以及交叉性和消除还原论:本研究阐明了LGBTQI+尼泊尔人接受姑息治疗和临终关怀经历的固有主题,最终描述了LGBTQI+尼泊尔患者在姑息治疗和临终关怀环境中的独特需求。在此过程中,本研究提出了对姑息关怀和临终关怀的交叉性关注,阐述了一个在学术界代表性仍然不足的深度边缘化群体所面临的特殊挑战。本研究的结果描述了 "姑息 "的扩展概念,以体现 "全人关怀",即除了纯粹身体、情感和/或精神上的传统姑息概念外,还包括社会和结构性疼痛的姑息。本研究还发现,必须承认并肯定 LGBTQI+ 尼泊尔人所处的交叉边缘化问题,包括社会经济地位、家庭和社区冲突、种族、人种、性别、性取向、年龄和环境资源稀缺等方面的经历。在进一步了解和改进 LGBTQI+ 文化谦逊的交叉性的过程中,本研究为进一步研究 LGBTQI+ 患者在各种资源环境下的临终关怀和姑息治疗中的跨文化需求提供了机会。
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引用次数: 0
Characterizing Difficulties and Management of Sleep Disturbances in a Tertiary Palliative Care Unit-A Retrospective Review. 在三级姑息治疗单元中,睡眠障碍的特点、困难和管理——一项回顾性回顾。
IF 1.7 4区 医学 Q4 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-01 Epub Date: 2025-01-15 DOI: 10.1177/08258597241309723
Jennifer Schacter, Jana Pilkey

Objective: Difficulty sleeping is common in palliative care, however often unrecognized by palliative care physicians. This retrospective review aims to gain a better understanding of the causes and treatment of sleeping disturbances in a tertiary palliative care unit. Methods: This study included 200 palliative care inpatients admitted between January 1, 2015, and August 31, 2020. Patients with sleep disturbances were placed into 3 subgroups: insomnia, delirium, and those with an unclear diagnosis. These categories were analyzed by bivariate analysis (ANOVA, Kruskal-Wallis) to determine statistical significance. Results: A total of 156 (78%) patients had symptoms suggestive of sleep disturbance and 163 (81.5%) patients were prescribed a sedative for sleep disturbance. Most patients were prescribed lorazepam (52 [26%]), followed by haloperidol (47 [23.5%]), and zopiclone (33 [16.5%]). Benzodiazepine and zopiclone prescribing decreased over time, while antipsychotic prescribing remained stable. When analyzed according to the most likely cause of the sleep disturbance, patients with insomnia had a higher Palliative Performance Score (P < .035) and were more likely to have a previous medical history of insomnia (P < .0003) than those with delirium. Both insomnia and delirium were quickly diagnosed but patients with unclear sleep disturbances took longer to recognize and treat. Conclusion: These results suggest that sleep disturbances are common at the end of life and can be challenging to categorize. Using specific criteria may be helpful in differentiating insomnia versus delirium and ultimately lead to more consistent approaches to management.

目的:睡眠困难在姑息治疗中很常见,但往往未被姑息治疗医生认识到。本回顾性审查的目的是获得一个更好的理解的原因和治疗睡眠障碍在三级姑息治疗单位。方法:本研究纳入2015年1月1日至2020年8月31日期间入院的200例姑息治疗住院患者。有睡眠障碍的患者被分为3个亚组:失眠、谵妄和诊断不明确的患者。采用双变量分析(ANOVA, Kruskal-Wallis)对这些类别进行分析,以确定统计显著性。结果:156例(78%)患者出现睡眠障碍症状,163例(81.5%)患者使用镇静剂治疗睡眠障碍。以劳拉西泮为主(52例[26%]),其次是氟哌啶醇(47例[23.5%])和佐匹克隆(33例[16.5%])。苯二氮卓类药物和佐匹克隆的处方随着时间的推移而减少,而抗精神病药物的处方保持稳定。当根据最可能导致睡眠障碍的原因进行分析时,失眠患者有更高的姑息性表现评分(P P)。结论:这些结果表明,睡眠障碍在生命末期很常见,并且很难分类。使用特定的标准可能有助于区分失眠症和谵妄,并最终导致更一致的管理方法。
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引用次数: 0
Impaired Decision-Making Capacity in a Patient With Oral Squamous Cell Carcinoma: Weighing the Benefits and Harms of Treatment Against Objection. 口腔鳞状细胞癌患者决策能力受损:权衡治疗的利弊与反对意见。
IF 1.7 4区 医学 Q4 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-01 Epub Date: 2025-06-03 DOI: 10.1177/08258597251339870
Charley Jang, Olivia M Seecof, Annette Georgia

Impairment of medical decision-making capacity is common in acutely ill patients especially those with solid malignancies. Many of these patients lack advance directives and healthcare proxies leaving clinicians with unclear guidance on subsequent treatment decisions and few existing mechanisms to address this issue. We present a case of a 55-year-old man with recurrent oral squamous cell carcinoma who lacked decision-making capacity due to cognitive impairment. He did not have an advance directive or documented healthcare proxy. He declined curative-intent cancer-directed therapy. The dilemma of treatment over objection was carefully explored and the patient ultimately underwent palliative radiation therapy. We advocate for a multidisciplinary framework in which all potential interventions both curative and palliative including treatment over objection are thoughtfully and carefully explored. We illustrate the need for improved guidance and approaches to ensure that these patients who lack decision-making capacity have access to potentially life-saving and therapeutic interventions.

医疗决策能力的损害是常见的急性病患者,特别是那些实体恶性肿瘤。这些患者中的许多人缺乏预先指示和医疗代理,使得临床医生对后续治疗决策的指导不明确,并且几乎没有现有的机制来解决这个问题。我们报告一例55岁男性复发性口腔鳞状细胞癌患者,由于认知障碍而缺乏决策能力。他没有事先指示,也没有医疗代理文件。他拒绝了以治疗为目的的癌症定向治疗。我们仔细探讨了治疗与反对的困境,患者最终接受了姑息性放射治疗。我们提倡一个多学科的框架,在这个框架中,所有潜在的干预措施,包括治疗和姑息治疗,包括反对治疗,都是经过深思熟虑和仔细探索的。我们说明需要改进指导和方法,以确保这些缺乏决策能力的患者能够获得可能挽救生命和治疗的干预措施。
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引用次数: 0
期刊
Journal of Palliative Care
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