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"Collateral beauty." Experiences and needs of professionals caring for parents continuing pregnancy after a life-limiting prenatal diagnosis: A grounded theory study. "附带之美"。产前确诊危及生命后继续妊娠的专业人员的经验和需求:基础理论研究。
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-06-01 Epub Date: 2024-05-30 DOI: 10.1177/02692163241255509
Konstanze Wiesner, Kerstin Hein, Gian Domenico Borasio, Monika Führer

Background: Caring for parents continuing pregnancy after learning about a severe life-limiting condition in their unborn is challenging. Most existing studies focus on affected families, whereas research on the subjective experience of care professionals is scarce.

Aim: We aimed to (1) explore experiences and needs of involved care professionals, (2) obtain information about existing care structures, and (3) identify requirements for a structured perinatal palliative care program.

Design: Grounded Theory study using theoretical sampling. Data was collected by semi-structured interviews and analyzed following the principles of grounded theory coding and situational analysis.

Setting: A total of 18 professionals from 12 different services in Munich and surroundings participated in the study: 8 physicians, 3 midwives, 2 nurses, 1 each pregnancy counselor, grief counselor, chaplain, clinical psychologist, and undertaker.

Results: Several organizations provide support for affected parents, but inter-institutional communication is scarce. Due to the lack of a dedicated perinatal palliative care program, professionals make immense and partly unpaid efforts to support concerned parents. Providers experience "collateral beauty" in their work despite all the suffering and grief. This includes the development of a humble attitude and feelings of gratitude toward life, the feeling of having a meaningful task and professional as well as personal growth. Requirements for a structured perinatal palliative care program include: fostering peer support, ensuring regular supervision, and enhancing interdisciplinary exchange.

Conclusions: Perinatal palliative care demands a high level of personal engagement but is experienced as highly rewarding by care professionals.

背景:父母在得知胎儿患有严重的危及生命的疾病后继续妊娠的护理工作极具挑战性。目的:我们的目标是:(1)探索参与护理的专业人员的经验和需求;(2)获取有关现有护理结构的信息;(3)确定结构化围产期姑息关怀项目的要求:设计:采用理论抽样的基础理论研究。通过半结构式访谈收集数据,并按照基础理论编码和情景分析的原则对数据进行分析:共有来自慕尼黑及周边地区 12 个不同服务机构的 18 名专业人员参与了研究:8 名医生、3 名助产士、2 名护士、怀孕咨询师、悲伤咨询师、牧师、临床心理学家和殡仪员各 1 名:结果:有多家机构为受影响的父母提供支持,但机构间的交流很少。由于缺乏专门的围产期姑息治疗项目,专业人员为支持受影响的父母付出了巨大的努力,但部分努力是无偿的。尽管经历了种种痛苦和悲伤,但医护人员在工作中体验到了 "附带之美"。这包括培养谦逊的态度和对生命的感激之情,感受到任务的意义,以及专业和个人的成长。结构化围产期姑息关怀项目的要求包括:促进同伴支持、确保定期监督、加强跨学科交流:结论:围产期姑息关怀对个人的参与度要求很高,但专业护理人员却能从中获得丰厚的回报。
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引用次数: 0
The effectiveness of out-of-hours palliative care telephone advice lines: A rapid systematic review. 时间外姑息关怀电话咨询热线的有效性:快速系统回顾。
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-06-01 Epub Date: 2024-05-06 DOI: 10.1177/02692163241248544
Therese Johansson, Rachel L Chambers, Thomas Curtis, Sophie Pask, Sarah Greenley, Molly Brittain, Anna E Bone, Lynn Laidlaw, Ikumi Okamoto, Stephen Barclay, Irene J Higginson, Fliss E M Murtagh, Katherine E Sleeman

Background: People with palliative care needs and their carers often rely on out-of-hours services to remain at home. Policymakers have recommended implementing telephone advice lines to ensure 24/7 access to support. However, the impact of these services on patient and carer outcomes, as well as the health care system, remains poorly understood.

Aim: To evaluate the clinical- and cost-effectiveness of out-of-hours palliative care telephone advice lines, and to identify service characteristics associated with effectiveness.

Design: Rapid systematic review (PROSPERO ID: CRD42023400370) with narrative synthesis.

Data sources: Three databases (Medline, EMBASE and CINAHL) were searched in February 2023 for studies of any design reporting on telephone advice lines with at least partial out-of-hours availability. Study quality was assessed using the Mixed Methods Appraisal Tool, and quantitative and qualitative data were synthesised narratively.

Results: Twenty-one studies, published 2000-2022, were included. Most studies were observational, none were experimental. While some evidence suggested that telephone advice lines offer guidance and reassurance, supporting care at home and potentially reducing avoidable emergency care use in the last months of life, variability in reporting and poor methodological quality across studies limit our understanding of patient/carer and health care system outcomes.

Conclusion: Despite their increasing use, evidence for the clinical- and cost-effectiveness of palliative care telephone advice lines remains limited, primarily due to the lack of robust comparative studies. There is a need for more rigorous evaluations incorporating experimental or quasi-experimental methods and longer follow-up, and standardised reporting of telephone advice line models and outcomes, to guide policy and practice.

背景:有姑息关怀需求的人及其照护者通常依赖非工作时间的服务来留在家中。政策制定者建议开通电话咨询热线,以确保全天候提供支持。目的:评估非工作时间姑息关怀电话咨询热线的临床和成本效益,并确定与有效性相关的服务特征:设计:快速系统综述(PROSPERO ID:CRD42023400370)与叙述性综合:2023 年 2 月,在三个数据库(Medline、EMBASE 和 CINAHL)中检索了有关电话咨询热线的任何设计的研究报告,这些热线至少部分在非工作时间提供服务。使用混合方法评估工具对研究质量进行评估,并对定量和定性数据进行综合叙述:结果:共纳入 21 项研究,这些研究发表于 2000 年至 2022 年。大多数研究都是观察性的,没有一项是实验性的。虽然有证据表明电话咨询热线可提供指导和安抚,支持居家护理,并有可能减少生命最后几个月中可避免的急诊护理使用,但研究报告的不一致性和研究方法的低质量限制了我们对患者/护理者和医疗保健系统结果的了解:尽管姑息关怀电话咨询热线的使用越来越多,但其临床和成本效益的证据仍然有限,这主要是由于缺乏可靠的比较研究。有必要进行更严格的评估,纳入实验或准实验方法和更长时间的随访,并对电话咨询热线的模式和结果进行标准化报告,以指导政策和实践。
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引用次数: 0
The 13th World Research Congress of the European Association for Palliative Care 欧洲姑息治疗协会第 13 届世界研究大会
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-05-09 DOI: 10.1177/02692163241242338
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引用次数: 0
Primary palliative care in low- and middle-income countries: A systematic review and thematic synthesis of the evidence for models and outcomes 中低收入国家的初级姑息关怀:对模式和成果证据的系统性审查和专题综述
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-05-02 DOI: 10.1177/02692163241248324
Anna Peeler, Oladayo Afolabi, Michael Adcock, Catherine Evans, Kennedy Nkhoma, Dorothee van Breevoort, Lindsay Farrant, Richard Harding
Background:Serious health-related suffering is predicted to double in low- and middle-income countries by 2060. Primary care offers the best opportunity to meet Universal Health Coverage in an equitable way. Primary palliative care growth should be evidence-based to ensure provision is feasible, acceptable and culturally congruent.Aim:To identify the current evidence related to primary palliative care and to describe how primary palliative is defined in this setting, dominant typologies of care and meaningful outcome measures in LMICs.Design:A systematic review and thematic synthesis was conducted. We described the nature, extent and distribution of published literature on primary palliative care in low- and middle-income countries, use thematic synthesis to characterize typologies of primary palliative care and design a process model for care delivery in low- and middle-income countries.Data sources:Medline, Psychinfo, Global Health, Embase and CINAHL.Results:Thirty-five publications were included. Nearly half took place in Asia ( n = 16, 45.7%). We identified five dominant typologies of primary palliative care, including delivery in primary care clinics by multidisciplinary healthcare teams and palliative care specialists, in people’s homes by healthcare professionals and volunteers and in tertiary healthcare facilities by generalists. We designed a process model for how these models operate within larger health systems and identified barriers and facilitators to implementing primary palliative care in this context.Conclusion:Evidence supporting primary palliative care in low- and middle-income countries is limited, and much of the published literature comes from Asia and southern Africa. Health systems in low- and middle-income countries have unique strengths and needs that affect primary palliative care services that should guide how services evolve to meet future need.
背景:据预测,到 2060 年,低收入和中等收入国家与健康有关的严重痛苦将增加一倍。初级医疗服务为以公平的方式实现全民医保提供了最佳机会。目的:确定目前与初级姑息关怀相关的证据,并描述在这种情况下如何定义初级姑息关怀、主流的关怀类型以及在低收入和中等收入国家有意义的结果测量。数据来源:Medline、Psychinfo、Global Health、Embase 和 CINAHL。结果:共纳入 35 篇文献。其中近一半发生在亚洲(16 篇,占 45.7%)。我们确定了初级姑息关怀的五种主要类型,包括由多学科医疗团队和姑息关怀专家在初级医疗诊所提供的服务、由医疗专业人员和志愿者在居民家中提供的服务以及由全科医生在三级医疗机构提供的服务。我们为这些模式如何在更大的医疗系统中运作设计了一个流程模型,并确定了在这种情况下实施初级姑息关怀的障碍和促进因素。结论:支持中低收入国家开展初级姑息关怀的证据有限,已发表的文献大多来自亚洲和南部非洲。中低收入国家的卫生系统具有影响初级姑息关怀服务的独特优势和需求,这些优势和需求应指导服务如何发展以满足未来的需求。
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引用次数: 0
Time estimates in prognostic discussions: A conversation analytic study of hospice multidisciplinary team meetings. 预后讨论中的时间估计:安宁疗护多学科团队会议的会话分析研究。
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-05-01 DOI: 10.1177/02692163241248523
Andrea Bruun, Nicola White, Linda Oostendorp, Patrick Stone, Steven Bloch

Background: Recommendations state that multidisciplinary team expertise should be utilised for more accurate survival predictions. How the multidisciplinary team discusses prognoses during meetings and how they reference time, is yet to be explored.

Aim: To explore how temporality is conveyed in relation to patients' prognoses during hospice multidisciplinary team meetings.

Design: Video-recordings of 24 hospice multidisciplinary team meetings were transcribed and analysed using Conversation Analysis.

Setting/participants: A total of 65 staff participating in multidisciplinary team meetings in a UK hospice from May to December 2021.

Results: Team members conveyed temporality in three different ways. (i) Staff stated that a patient was dying as part of the patient's current health status. These formulations did not include a time reference per se but described the patient's current situation (as dying) instead. (ii) Staff used specific time period references where another specific reference had been provided previously that somehow constrained the timeframe. In these cases, the prognosis would conflict with other proposed care plans. (iii) Staff members used unspecific time period references where the reference appeared vague and there was greater uncertainty about when the patient was expected to die.

Conclusions: Unspecific time period references are sufficient for achieving meaningful prognostic talk in multidisciplinary teams. In-depth discussion and accurate prediction of patient prognoses are not deemed a priority nor a necessity of these meetings. Providing precise predictions may be too difficult due to uncertainty and accountability. The lack of staff pursuing more specific time references implies shared knowledge between staff and a context-specific use of prognostic estimates.

背景:建议指出,应利用多学科团队的专业知识来更准确地预测生存期。目的:探讨在安宁疗护多学科团队会议期间如何传达与患者预后相关的时间性:设计:采用会话分析法对 24 次临终关怀多学科团队会议的视频录像进行转录和分析:在2021年5月至12月期间,共有65名员工参加了英国一家安宁疗护机构的多学科团队会议:团队成员以三种不同的方式表达了时间性。(i) 员工表示病人即将死亡是病人当前健康状况的一部分。这些表述本身并不包含时间参照,而是描述了病人目前的状况(濒临死亡)。(ii) 工作人员在使用具体时间段的提法时,之前已经提供了另一个具体提法,以某种 方式限制了时间范围。在这种情况下,预后会与其他建议的护理计划相冲突。(iii) 工作人员使用了不具体的时间段参考,因为这些参考显得模糊不清,而且病人预计死亡时间的不确定性较大:在多学科团队中进行有意义的预后讨论时,不明确的时间段参考就足够了。深入讨论和准确预测病人预后既不是这些会议的重点,也不是必要条件。由于不确定性和问责制,提供精确预测可能过于困难。工作人员不追求更具体的时间参考,这意味着工作人员之间共享知识,并根据具体情况使用预后估计。
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引用次数: 0
The 4AT, a rapid delirium detection tool for use in hospice inpatient units: Findings from a validation study. 用于安宁疗护住院病房的快速谵妄检测工具 4AT:验证研究的结果。
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-05-01 DOI: 10.1177/02692163241242648
Elizabeth Arnold, Anne M Finucane, Stacey Taylor, Juliet A Spiller, Siobhan O'Rourke, Julie Spenceley, Emma Carduff, Zoë Tieges, Alasdair Mj MacLullich

Background: Delirium is a serious neuropsychiatric syndrome with adverse outcomes, which is common but often undiagnosed in terminally ill people. The 4 'A's test or 4AT (www.the4AT.com), a brief delirium detection tool, is widely used in general settings, but validation studies in terminally ill people are lacking.

Aim: To determine the diagnostic accuracy of the 4AT in detecting delirium in terminally ill people, who are hospice inpatients.

Design: A diagnostic test accuracy study in which participants underwent the 4AT and a reference standard based on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The reference standard was informed by Delirium Rating Scale Revised-98 and tests assessing arousal and attention. Assessments were conducted in random order by pairs of independent raters, blinded to the results of the other assessment.

Setting/participants: Two hospice inpatient units in Scotland, UK. Participants were 148 hospice inpatients aged ⩾18 years.

Results: A total of 137 participants completed both assessments. Three participants had an indeterminate reference standard diagnosis and were excluded, yielding a final sample of 134. Mean age was 70.3 (SD = 10.6) years. About 33% (44/134) had reference standard delirium. The 4AT had a sensitivity of 89% (95% CI 79%-98%) and a specificity of 94% (95% CI 90%-99%). The area under the receiver operating characteristic curve was 0.97 (95% CI 0.94-1).

Conclusion: The results of this validation study support use of the 4AT as a delirium detection tool in hospice inpatients, and add to the literature evaluating methods of delirium detection in palliative care settings.

Trial registry: ISCRTN 97417474.

背景:谵妄是一种严重的神经精神综合征,会导致不良后果,在临终患者中很常见,但往往得不到诊断。4'A's测试或4AT(www.the4AT.com)是一种简短的谵妄检测工具,在普通环境中被广泛使用,但缺乏对临终病人的验证研究。目的:确定4AT在检测临终病人(临终关怀住院病人)谵妄方面的诊断准确性:设计:一项诊断测试准确性研究,参与者接受 4AT 和基于《精神疾病诊断与统计手册》第五版的参考标准测试。参考标准参考了谵妄评分量表修订版-98以及评估唤醒和注意力的测试。评估由一对独立的评定者按随机顺序进行,对另一项评估结果保密:英国苏格兰的两个安宁疗护住院病房。参与者为 148 名年龄在 18 岁以上的安宁疗护住院患者:共有 137 名参与者完成了两项评估。有 3 名参与者的参考标准诊断不确定,因此被排除在外,最终样本为 134 人。平均年龄为 70.3 (SD = 10.6)岁。约 33%(44/134)的人患有参考标准谵妄。4AT 的灵敏度为 89%(95% CI 79%-98%),特异度为 94%(95% CI 90%-99%)。接收者操作特征曲线下的面积为 0.97 (95% CI 0.94-1):这项验证研究的结果支持将4AT作为安宁疗护住院患者的谵妄检测工具,并为评估姑息治疗环境中谵妄检测方法的文献增添了新的内容:试验登记:ISCrtn 97417474。
{"title":"The 4AT, a rapid delirium detection tool for use in hospice inpatient units: Findings from a validation study.","authors":"Elizabeth Arnold, Anne M Finucane, Stacey Taylor, Juliet A Spiller, Siobhan O'Rourke, Julie Spenceley, Emma Carduff, Zoë Tieges, Alasdair Mj MacLullich","doi":"10.1177/02692163241242648","DOIUrl":"10.1177/02692163241242648","url":null,"abstract":"<p><strong>Background: </strong>Delirium is a serious neuropsychiatric syndrome with adverse outcomes, which is common but often undiagnosed in terminally ill people. The 4 'A's test or 4AT (www.the4AT.com), a brief delirium detection tool, is widely used in general settings, but validation studies in terminally ill people are lacking.</p><p><strong>Aim: </strong>To determine the diagnostic accuracy of the 4AT in detecting delirium in terminally ill people, who are hospice inpatients.</p><p><strong>Design: </strong>A diagnostic test accuracy study in which participants underwent the 4AT and a reference standard based on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The reference standard was informed by Delirium Rating Scale Revised-98 and tests assessing arousal and attention. Assessments were conducted in random order by pairs of independent raters, blinded to the results of the other assessment.</p><p><strong>Setting/participants: </strong>Two hospice inpatient units in Scotland, UK. Participants were 148 hospice inpatients aged ⩾18 years.</p><p><strong>Results: </strong>A total of 137 participants completed both assessments. Three participants had an indeterminate reference standard diagnosis and were excluded, yielding a final sample of 134. Mean age was 70.3 (SD = 10.6) years. About 33% (44/134) had reference standard delirium. The 4AT had a sensitivity of 89% (95% CI 79%-98%) and a specificity of 94% (95% CI 90%-99%). The area under the receiver operating characteristic curve was 0.97 (95% CI 0.94-1).</p><p><strong>Conclusion: </strong>The results of this validation study support use of the 4AT as a delirium detection tool in hospice inpatients, and add to the literature evaluating methods of delirium detection in palliative care settings.</p><p><strong>Trial registry: </strong>ISCRTN 97417474.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":null,"pages":null},"PeriodicalIF":4.4,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11170929/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141065664","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"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
Symptom burden, service use and care dissatisfaction among older adults with cancer, cardiovascular disease, respiratory disease, dementia and neurological disease during the last 3 months before death: A pooled analysis of mortality follow-back surveys 患有癌症、心血管疾病、呼吸系统疾病、痴呆症和神经系统疾病的老年人在死前最后 3 个月的症状负担、服务使用情况和对护理的不满意度:死亡率跟踪调查汇总分析
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-04-29 DOI: 10.1177/02692163241246049
Mitsunori Miyashita, Catherine J Evans, Deokee Yi, Barbara Gomes, Wei Gao
Background:Variation in the provision of care and outcomes in the last months of life by cancer and non-cancer conditions is poorly understood.Aims:(1) To describe patient conditions, symptom burden, practical problems, service use and dissatisfaction with end-of-life care for older adults based on the cause of death. (2) To explore factors related to these variables focussing on the causes of death.Design:Secondary analysis of pooled data using cross-sectional mortality follow-back surveys from three studies: QUALYCARE; OPTCare Elderly; and International Access, Right, and Empowerment 1.Setting/participants:Data reported by bereaved relatives of people aged ⩾75 years who died of cancer, cardiovascular disease, respiratory disease, dementia or neurological disease.Results:The pooled dataset contained 885 responses. Overall, service use and circumstances surrounding death differed significantly across causes of death. Bereaved relatives reported symptom severity from moderate to overwhelming in over 30% of cases for all causes of death. Across all causes of death, 28%–38% of bereaved relatives reported some level of dissatisfaction with care. Patients with cardiovascular disease and dementia experienced lower symptom burden and dissatisfaction than those with cancer. The absence of a reliable key health professional was consistently associated with higher symptom burden ( p = 0.002), practical problems ( p = 0.001) and dissatisfaction with care ( p = 0.001).Conclusions:We showed different trajectories towards death depending on cause. Improving symptom burden and satisfaction in patients at the end-of-life is challenging, and the presence of a reliable key health professional may be helpful.
背景:人们对癌症和非癌症疾病在生命最后几个月所提供的护理和结果的差异知之甚少。目的:(1)根据死亡原因描述老年人的患者状况、症状负担、实际问题、服务使用情况以及对临终关怀的不满。(2)以死亡原因为重点,探讨与这些变量相关的因素。设计:利用三项研究的横断面死亡率跟踪调查汇总数据进行二次分析:背景/参与者:年龄在 75 岁以上、死于癌症、心血管疾病、呼吸系统疾病、痴呆症或神经系统疾病的人的遗属报告的数据。结果:汇总数据集包含 885 份回复。总体而言,不同死因的患者在服务使用和死亡环境方面存在显著差异。在所有死因中,丧亲者报告症状严重程度为中度至严重的占 30% 以上。在所有死因中,28%-38% 的丧亲者对护理服务有一定程度的不满。与癌症患者相比,心血管疾病和痴呆症患者的症状负担和不满意度较低。没有可靠的主要医疗专业人员始终与较高的症状负担(p = 0.002)、实际问题(p = 0.001)和对护理的不满(p = 0.001)相关。改善临终患者的症状负担和满意度具有挑战性,可靠的主要医疗专业人员的存在可能会有所帮助。
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引用次数: 0
'How long do you think?' Unresponsive dying patients in a specialist palliative care service: A consecutive cohort study. 你认为还要多久?专科姑息关怀服务中反应迟钝的临终病人:连续队列研究。
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-04-23 DOI: 10.1177/02692163241238903
Tricia O'Connor, Wai-Man Liu, Juliane Samara, Joanne Lewis, Catherine Paterson
BACKGROUNDPredicting length of time to death once the person is unresponsive and deemed to be dying remains uncertain. Knowing approximately how many hours or days dying loved ones have left is crucial for families and clinicians to guide decision-making and plan end-of-life care.AIMTo determine the length of time between becoming unresponsive and death, and whether age, gender, diagnosis or location-of-care predicted length of time to death.DESIGNRetrospective cohort study. Time from allocation of an Australia-modified Karnofsky Performance Status (AKPS) 10 to death was analysed using descriptive narrative. Interval-censored survival analysis was used to determine the duration of patient's final phase of life, taking into account variation across age, gender, diagnosis and location of death.SETTING/PARTICIPANTSA total of 786 patients, 18 years of age or over, who received specialist palliative care: as hospice in-patients, in the community and in aged care homes, between January 1st and October 31st, 2022.RESULTSThe time to death after a change to AKPS 10 is 2 days (n = 382; mean = 2.1; median = 1). Having adjusted for age, cancer, gender, the standard deviation of AKPS for the 7-day period prior to death, the likelihood of death within 2 days is 47%, with 84% of patients dying within 4 days.CONCLUSIONThis study provides valuable new knowledge to support clinicians' confidence when responding to the 'how long' question and can inform decision-making at end-of-life. Further research using the AKPS could provide greater certainty for answering 'how long' questions across the illness trajectory.
背景一旦患者没有反应并被认为濒临死亡,预测其死亡时间的长短仍然是不确定的。AIM To determine the length of time between becoming unresponsive and death, and whether age, gender, diagnosis or location-of-care predicted length of time to death.设计回顾性队列研究。采用描述性叙述方法分析了从分配澳大利亚改良卡诺夫斯基表现状态(AKPS)10到死亡的时间。考虑到不同年龄、性别、诊断和死亡地点的差异,采用间隔删失生存分析法确定患者生命最后阶段的持续时间。设置/参与者2022年1月1日至10月31日期间,共有786名18岁或18岁以上的患者接受了专科姑息治疗:安宁疗护住院患者、社区患者和养老院患者。结果改用AKPS 10后的死亡时间为2天(n = 382;平均值 = 2.1;中位数 = 1)。在对年龄、癌症、性别、死亡前 7 天的 AKPS 标准差进行调整后,2 天内死亡的可能性为 47%,84% 的患者在 4 天内死亡。利用 AKPS 开展的进一步研究可为回答整个疾病轨迹中的 "多长时间 "问题提供更大的确定性。
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引用次数: 0
WITHDRAWAL - Administrative Duplicate Publication: Tribute to Derek Doyle and Cynthia Goh. 撤销 - 行政复议出版物:向 Derek Doyle 和 Cynthia Goh 致敬。
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-04-22 DOI: 10.1177/02692163241243121
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引用次数: 0
Death education interventions for people with advanced diseases and/or their family caregivers: A scoping review 针对晚期疾病患者和/或其家庭照顾者的死亡教育干预:范围综述
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-04-18 DOI: 10.1177/02692163241238900
Tong Wang, Kin Cheung, Huilin Cheng
Background:People with life-threatening diseases and their family caregivers confront psychosocial and spiritual issues caused by the persons’ impending death. Reviews of death education interventions in the context of life-threatening diseases are scarce and limited to certain intervention types.Aims:This study aims to ascertain existing evidence on death education interventions for the population of adults with advanced diseases and/or their family caregivers and identify gaps for future research.Design:A scoping review guided by Arksey and O’Malley’s framework.Data sources:Thirteen electronic databases were searched for experimental and qualitative studies on death education interventions for the advanced disease population and/or their family caregivers between 1 January 1960 and 25 October 2023.Results:Nine types of interventions were identified in 47 studies, which included 5 qualitative and 42 experimental designs, half of which were pilot and feasibility trials. Most of the studies focused on people with advanced cancer, and only seven investigated caregivers or families/couples. Death-related outcomes were less likely to be assessed relative to psychological outcomes, spiritual well-being, and quality of life. Life review interventions, cognitive-behavior therapy, narrative therapy, and general psychosocial interventions decreased depression and anxiety, but evidence was limited. Factors contributing to the interventions’ success included intervention content, which enabled the disclosure of personal experience and death concerns comfortably, trained professionals, and connection to family caregivers.Conclusions:This work identified a few potentially effective death education interventions for psychological outcomes for people with advanced cancer or their caregivers. Additional trials are needed to confirm the effectiveness of these interventions.
背景:罹患危及生命的疾病的患者及其家庭照顾者面临着患者即将死亡所带来的社会心理和精神问题。目的:本研究旨在确定针对晚期疾病成人患者和/或其家庭照顾者的死亡教育干预措施的现有证据,并找出未来研究的差距。设计:在Arksey和O'Malley的框架指导下进行了范围界定综述。数据来源:在13个电子数据库中搜索了1960年1月1日至2023年10月25日期间针对晚期疾病患者和/或其家庭照顾者的死亡教育干预的实验性和定性研究。结果:在47项研究中确定了9种干预类型,其中包括5项定性设计和42项实验设计,其中一半是试点和可行性试验。大多数研究的重点是晚期癌症患者,只有七项研究对护理人员或家庭/夫妇进行了调查。相对于心理结果、精神健康和生活质量,死亡相关结果的评估较少。生命回顾干预、认知行为疗法、叙事疗法和一般社会心理干预可减少抑郁和焦虑,但证据有限。这些干预措施取得成功的因素包括干预内容(能让患者轻松地披露个人经历和对死亡的担忧)、训练有素的专业人员以及与家庭照护者的联系。需要进行更多试验来确认这些干预措施的有效性。
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引用次数: 0
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Palliative Medicine
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