terminally ill

身患绝症
  • 文章类型: Journal Article
    繁荣是人类福祉研究中越来越常见的结构。但是,在生活的某些阶段,它作为幸福框架的适当性存在争议。在本文中,我们考虑一个人在生命的尽头有可能繁荣到什么程度。患有绝症的人通常会经历严重而持久的疼痛和痛苦,尤其是当他们选择延长寿命的治疗方法时。人类商品的某些方面,然而,它们似乎是繁荣的组成部分,比如意义和目的,深厚的人际关系,性格和美德-可以在生命结束时独特地实现。我们认为,有一种合格的感觉,可以在生命的尽头蓬勃发展,但必须对传统的繁荣概念中隐含的标准进行重要的修改。我们最后讨论了生命终结时的健康经验评估,并探讨了在姑息治疗实践中引入蓬勃发展措施的可能性。
    Flourishing is an increasingly common construct employed in the study of human wellbeing. But its appropriateness as a framework of wellbeing at certain stages of life is contested. In this paper, we consider to what extent it is possible for someone to flourish at the end of life. People with terminal illness often experience significant and protracted pain and suffering especially when they opt for treatments that prolong life. Certain aspects of human goods, however, that are plausibly constitutive of flourishing-such as meaning and purpose, deep personal relationships, and character and virtue-can be uniquely realised when life is ending. We argue that there is a qualified sense in which one can flourish at the end of life but that one must make important modifications to the criteria implicit in conventional conceptions of flourishing. We close with a discussion of the empirical assessment of wellbeing at the end of life and explore the possibility of introducing a flourishing measure in palliative care practice.
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  • 文章类型: Journal Article
    背景:临终体验受周围环境的显著影响,强调在姑息治疗中探索内置环境因素的重要性,尤其是儿科患者。由于大多数生命终结者是老年人或成年人,大多数研究都集中在这个人口统计的环境上。然而,必须认识到儿童和青少年在这方面可能有不同的需求。目的:这篇叙述性综述旨在探讨在姑息治疗环境中,在住院单位中,建筑环境对儿科临终患者的影响。方法:在四个关键数据库(PubMed,MEDLINE,PsycINFO,和CINAHL)来识别相关文章。筛选过程始于对文章标题和摘要的初步评估,然后对符合纳入标准的全文研究进行彻底审查。数据综合涉及由NVIVO软件促进的主题分析,并由从选定文献中提取的结果提供信息。结果:审查确定了22项符合纳入标准的研究,揭示儿科姑息治疗中环境因素的关键见解。出现了四个主题,强调活动和游戏环境的重要性,患者的住宿空间,家庭的支持空间,和户外和绿色空间。结论:承认对建筑方面的有限研究以及对家庭和员工观点的依赖,未来的研究应该优先理解儿科患者的观点,尤其是青少年。该研究强调了在儿科姑息治疗中加强环境设计以满足患者及其家人的独特需求的重要性。
    Background: The end-of-life experience is significantly influenced by the surrounding environment, emphasizing the importance of exploring built environmental factors in palliative care, especially for pediatric patients. As the majority of end-of-life individuals are elderly or adults, most studies have focused on the environment for this demographic. However, it is essential to recognize that children and adolescents may have distinct needs in this regard. Aim: This narrative review aims to explore the impact of the built environment on pediatric end-of-life patients in inpatient units within palliative care settings. Method: A comprehensive search was conducted across four key databases (PubMed, MEDLINE, PsycINFO, and CINAHL) to identify relevant articles. The screening process commenced with an initial assessment of article titles and abstracts, followed by a thorough examination of full-text studies that met the inclusion criteria. Data synthesis involved thematic analysis facilitated by NVIVO software and informed by the findings extracted from selected literature. Results: The review identified 22 studies meeting inclusion criteria, revealing key insights into environmental considerations in pediatric palliative care. Four themes emerged, highlighting the significance of activities and play environments, accommodation spaces for patients, supportive spaces for families, and outdoor and green spaces. Conclusions: Acknowledging limited research on architectural aspects and reliance on family and staff perspectives, future studies should prioritize understanding pediatric patients\' perspectives, particularly adolescents. The study underscores the importance of enhancing environmental design in pediatric palliative care to meet the unique needs of patients and their families.
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  • 文章类型: Journal Article
    对于接近生命终点(生命不足12个月)的虚弱老人,目前的后备位置是住院。对于这个人口,人们不愿意使用“绝症”一词,导致过度治疗,与人们的意愿不符的过度诊断和管理。这是所谓医院危机的主要原因,包括医院容量下降,进行选择性手术的能力降低,急诊部门和救护车的出勤率增加。作者最近进行了最大的随机研究,根据他们的知识,试图告知专科医院医疗团队他们收治的病人的绝症状况。这些信息不会以任何方式影响他们的临床决策。作者讨论了可能发生这种情况的原因,例如,当前社会避免讨论死亡和死亡,以及医护人员集中在积极管理急性呈现问题上,而忽略了老年人虚弱的潜在预后。作者讨论了改善接近生命终点的老年人管理的方法,例如,使用共享决策的概念进行更详细的护理讨论目标,而不是简单地完成高级护理决策文档。以这种方式赋予人们权力可能成为人们医疗保健的最重要驱动力。
    The current fallback position for the elderly frail nearing the end of life (less than 12 months to live) is hospitalisation. There is a reluctance to use the term \'terminally ill\' for this population, resulting in overtreatment, overdiagnosis and management that is not consistent with the wishes of people. This is the major contributor to the so-called hospital crisis, including decreased capacity of hospitals, reduced ability to conduct elective surgery, increased attendances at emergency departments and ambulance ramping. The authors recently conducted the largest randomised study, to their knowledge, attempting to inform specialist hospital medical teams about the terminally ill status of their admitted patients. This information did not influence their clinical decisions in any way. The authors discuss the reasons why this may have occurred, such as the current avoidance of discussing death and dying by society and the concentration of healthcare workers on actively managing the acute presenting problem and ignoring the underlying prognosis in the elderly frail. The authors discuss ways of improving the management of the elderly nearing the end of life, such as more detailed goals of care discussions using the concept of shared decision-making rather than simply completing Advanced Care Decision documents. Empowering people in this way could become the most important driver of people\'s health care.
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  • 文章类型: Journal Article
    背景:冠状病毒病(COVID-19)大流行已导致全球大量死亡,并在重塑医疗保健服务并深刻影响家庭应对损失的同时,留下了大量失去亲人的人。大流行期间,公共卫生措施和对感染COVID的恐惧重塑了家庭的悲痛,增加情感层次和复杂性。丧亲的挑战进一步加剧了这种情况,包括改变改变社会规范和限制家庭尊重亲人的聚会,造成进一步的痛苦。目的:阐明在COVID-19大流行期间住院的绝症家庭成员的家庭的经验,并从现有文献中确定主题,这些主题可以为临床实践提供信息,以指导医疗保健提供者在姑息治疗期间如何照顾个人及其家人。方法:本范围界定综述深入研究了来自PubMed中同行评审文献的定性研究,CINAHL,和MEDLINE数据库。结果:彻底的搜索产生了298篇文章,其中10人被列入本审查。确定了四个主题:交流的重要性,与亲人分离的挑战和影响,改变了仪式和丧亲,以及获得服务和支持。对实践的影响:COVID-19大流行施加的限制和恐惧显着改变了患者和家庭的护理动态,扰乱习惯的面对面访问,增加家庭的情绪压力,同时强调个性化临终关怀的必要性。整合支持性框架并利用远程医疗平台或混合护理模式对于解决患者所经历的悲伤和损失的复杂性至关重要。家庭,以及大流行期间和之后的护理人员。
    Background: The coronavirus disease (COVID-19) pandemic has caused significant global mortality and left a substantial number of bereaved individuals in its wake while reshaping healthcare delivery and profoundly affecting families coping with loss. During the pandemic, public health measures and the fear of getting COVID have reshaped grieving for families, adding emotional layers and complexities. This was further compounded by bereavement challenges, including changes to gatherings that have altered social norms and limited families in honoring loved ones, causing further distressing. Purpose: To elucidate experiences of families who had a hospitalized terminally ill family member during the COVID-19 pandemic and identify themes from the existing literature that can inform clinical practice related to how healthcare providers care for individuals and their families during palliative care going forward. Methods: This scoping review delved into qualitative studies sourced from peer-reviewed literature found in PubMed, CINAHL, and MEDLINE databases. Results: A thorough search yielded 298 articles, of which 10 were included in the present review. Four themes were identified: the importance of communication, the challenges and effects of separation from loved ones, changed rituals and bereavement, and access to services and support. Implications for Practice: The restrictions and fear imposed by the COVID-19 pandemic has significantly altered patient and family care dynamics, disrupting customary face-to-face visits and increasing emotional strain for families, while highlighting the necessity for personalized end-of-life care. Integrating supportive frameworks and utilizing telehealth platforms or hybrid care models will be crucial in addressing the complexities of grief and loss experienced by patients, families, and caregivers during and after the pandemic.
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  • 文章类型: Journal Article
    背景:随着人们寿命的增加以及全球范围内从传染病向非传染病的过渡,在低收入和中等收入国家(LMICs),越来越多的绝症患者需要家庭护理。
    目的:本系统综述评估了LMIC中晚期疾病患者的家庭护理模式。测量的主要结果是生活质量(QoL),坚持治疗,疲劳,双习惯和相关活动。
    方法:本综述是根据系统综述和荟萃分析(PRISMA)建议的首选报告项目进行的。四个数据库;护理和相关健康文献累积指数(CINAHL),MEDLINE(Ovid),Cochrane图书馆和Scopus,系统地搜索了潜在的相关研究。进行记录筛选(标题/摘要和全文),共7项研究(4项随机对照试验[RCT]和3项准实验研究)纳入本综述。
    结果:尽管纳入的研究报告患者的QoL显著增加,这些研究有质量问题。
    结论:注意到现有研究的普遍匮乏,以及LMIC跨地域的质量问题。需要对绝症患者进行更多的家庭护理研究,以提高其质量并在这些地区传播。
    BACKGROUND: With the increasing lifespan of people and the transition from communicable to non-communicable diseases across the globe, there is an increasing number of people with terminal illnesses requiring home-based care in Low- and Middle-Income Countries (LMICs).
    OBJECTIVE: This systematic review evaluated home-based care models for patients with terminal illnesses in LMICs. The primary outcomes measured are quality of life (QoL), adherence to treatment, fatigue, bimanual and related activities.
    METHODS: This review was conducted in accordance with the preferred reporting items for systematic reviews and meta-analyses (PRISMA) recommendations. Four databases; Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE (Ovid), Cochrane Library and Scopus, were systematically searched for potentially relevant studies. Screening of records (titles/abstracts from and full-texts) was done and a total of seven studies (four Randomized Control Trials [RCTs] and three quasi-experimental studies) were included in this review.
    RESULTS: Even though the included studies reported significant increase in the QoL of the studied patients, the studies have quality concerns.
    CONCLUSIONS: Noting the general paucity of existing studies coupled with quality concerns across geographies in LMICs. More studies on home-based care for patients with terminal illness are needed with improved qualities and spread in these regions.
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  • 文章类型: Journal Article
    为了帮助医疗保健专业人员(HCP)在传达有关死亡的信息时更加自信,我们寻求为HCP开发一种沟通模型,以促进非紧急情况下与垂死患者和家庭护理人员(FC)的对话.
    我们使用了四阶段综合方法:(1)基于系统的文献综述和专家知识创建初步模型,(2)国际姑息治疗专家对示范草案的审查,(3)关键利益相关者的审查,(4)沟通专家的最终评估。
    在临床识别死亡后,沟通模型为基于三个阶段的对话导航提供了结构和实用的沟通辅助工具。它将内容和关系水平描述为关于接近死亡的有效对话的核心维度,并强调了HCP自我意识和自我护理在照顾死者时的重要性。
    基于关键利益相关者的系统参与,该模型支持临床医生成功且更自信地浏览有关濒临死亡的患者及其FC的挑战性对话.
    这项研究扩展了有关接近死亡的交流的理论基础,并为教育干预和临床使用提供了实用的模型。
    UNASSIGNED: To help healthcare professionals (HCP) act with more confidence when communicating about approaching death, we sought to develop a communication model for HCP to facilitate conversations with dying patients and family caregivers (FC) in nonemergency situations.
    UNASSIGNED: We used a four-phase integrative approach: (1) creation of a preliminary model based on a systematic literature review and expert knowledge, (2) review of the model draft by international palliative care experts, (3) review by key stakeholders, and (4) final appraisal by communication experts.
    UNASSIGNED: After the clinical recognition of dying, the communication model provides a structure and practical communication aids for navigating the conversation based on three phases. It describes the content and relational level as core dimensions of effective conversations about approaching death and highlights the importance of HCP self-awareness and self-care when caring for the dying.
    UNASSIGNED: Based on systematic involvement of key stakeholders, the model supports clinicians navigating challenging conversations about approaching death with dying patients and their FC successfully and with more confidence.
    UNASSIGNED: This study expands the theoretical basis for communication about approaching death and offers a pragmatic model for educational interventions and clinical use.
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  • 文章类型: Journal Article
    背景:晚期疾病是一种不可逆转的疾病,没有维持生命的程序,通常导致死亡或永久性残疾,从中恢复是不可能的。当涉及时,家庭护理人员被认为可以改善健康状况,比如减少住院,并建立患者最初获得专业治疗服务的机会。然而,照顾患有绝症的患者被视为提供护理最困难的方面之一。这项研究旨在找出挑战,以及家庭照顾者制定的应对策略,以应对绝症患者的护理。
    方法:采用探索性描述性定性方法。来自Korle-Bu教学医院的二十(20)家庭护理人员自愿参加了该研究。对参与者进行了半结构化访谈。然后使用主题分析对转录的访谈进行分析。
    结果:从分析来看,出现了三个主要主题:挑战,应对策略,和社会支持。这些主题包括十六个次主题,包括财政负担,健康状况不佳,信仰和祈祷,以及卫生专业人员的支持。从研究中,男性和女性家庭照顾者都说,为患有绝症的患病亲属提供护理的特点是日常工作需要时间,而且情绪紧张。此外,尽管这是一项艰巨的工作,为生病的亲戚提供护理的家庭成员从未放弃,引用责任,家庭的重要性,和宗教信仰是这样做的主要动机。
    结论:绝症亲属的家庭照料角色的困难和要求是复杂和多因素的。调查结果呼吁对家庭护理人员进行多学科的专业关注,并采取从整体上支持他们生活的政策。
    BACKGROUND: Terminal illness is an irreversible illness that, without life-sustaining procedures, usually results in death or permanent disability from which recovery is unlikely. When involved, family caregivers are believed to improve health outcomes, such as reduced hospitalization, and establishing a patient\'s initial access to professional treatment services. However, caring for a patient with a terminal illness is viewed as one of the most difficult aspects of providing care. This study aimed to identify the challenges, and coping strategies developed by family caregivers to cope with the care of the terminally ill person.
    METHODS: An exploratory descriptive qualitative approach was used. Twenty (20) family caregivers voluntarily participated in the study from the Korle-Bu Teaching Hospital. Semi-structured interviews were conducted with the participants. The transcribed interviews were then analysed using thematic analysis.
    RESULTS: From the analysis, three main themes emerged: challenges, coping strategies, and social support. These themes encompassed sixteen subthemes including financial burden, bad health conditions, faith and prayer, and support from health professionals. From the study, both male and female family caregivers narrated that providing care for sick relatives undergoing terminal disease is characterized as a daily duty demanding one\'s time and fraught with emotional strain. In addition, even though it was a difficult job, family members who provided care for ailing relatives never gave up, citing responsibility, the importance of family, and religious beliefs as the primary motivations for doing so.
    CONCLUSIONS: The difficulties and demands of family caregiving roles for terminally ill relatives are complex and multifactorial. The findings call for multidisciplinary professional attention for family caregivers and policies that will support their lives holistically.
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  • 文章类型: Journal Article
    目标:医生和护士在具有挑战性的临终护理(EOL)任务中处于中心地位,这项研究旨在探索和描述医生和护士对癌症患者生命终结的认识和认可的经验。
    方法:定性,基于半开放式访谈指南,进行了个人访谈的探索性研究设计。采访了挪威大学一家医院在内科或外科部门工作的6名医生和6名护士。访谈采用定性内容分析进行分析。
    结果:这项研究的发现强调,识别和承认癌症患者处于生命终结状态是一个具有挑战性的过程。分析中出现了三个子主题;经历的意义,组织结构的重要性,以及共同理解的重要性。进一步分析了一个主要主题,并从子主题中抽象出来;安全地管理识别和承认生命终结的平衡行为。
    结论:在EOL设置中存在很多风险,和医疗保健专业人员(HCP)必须平衡有关EOL决策的几个方面。在这些情况下取得适当的平衡是具有挑战性的。HCP需要通过与,和支持,同事们,支持组织结构和经验。加强安全网将对改善临床实践产生明显影响,以减少徒劳的治疗,并为医院中所有垂死的患者提供高质量的EOL护理。
    OBJECTIVE: Doctors and nurses are central in the challenging task of end-of-life (EOL) care, and this study aims to explore and describe doctors\' and nurses\' experiences of recognition and acknowledgment of the end of life for patients with cancer.
    METHODS: A qualitative, explorative research design with individual interviews was carried out based on a semi-open interview guide. A total of 6 doctors and 6 nurses working in medical or surgical departments at a Norwegian University hospital were interviewed. The interviews were analyzed using qualitative content analysis.
    RESULTS: The study\'s findings highlight that recognizing and acknowledging patients with cancer as being at end-of-life is a challenging process. Three subthemes emerged from the analysis; the significance of being experienced, the significance of organizational structures, and the significance of having a common understanding. A main theme was analyzed further and abstracted from the subthemes; Being safe to manage the balancing act of recognizing and acknowledging the end of life.
    CONCLUSIONS: Much is at stake in the EOL setting, and healthcare professionals (HCP) must balance several aspects regarding EOL decisions. Striking the right balance in these situations is challenging. HCPs need a safety net through collaboration with, and support from, colleagues, supporting organizational structures and experience. Strengthening the safety net will have a clear impact on improving clinical practice to reduce futile treatment and provide high-quality EOL care for all dying patients in hospitals.
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  • 文章类型: Journal Article
    背景:非亲属照顾者的角色,比如朋友,邻居,和熟人,在提供临终关怀方面意义重大,但在研究和政策讨论中往往被忽视。这些护理人员为临终关怀的个人提供广泛的支持,除了或代替家庭成员。然而,文献中关于这些经历的证据有限,负担,和非亲属照顾者的好处。
    目的:这项研究的目的是研究非亲属护理人员在临终关怀中的作用和贡献。这项研究旨在揭示他们的经历,相关挑战,好处,和支持要求。
    方法:为了实现这一目标,将采用混合方法,通过约150名非亲属护理人员的结构化问卷和多达25名参与者的深度访谈收集数据。问卷将衡量影响,负担,和照顾的好处。家庭照顾者的负担量表,作为照顾者规模的好处,家庭需求清单,积极心理健康量表,a图形接近度,和选定项目的Eurofamcare共同评估工具的社会人口和护理相关数据将被使用。将使用IBMSPSSStatistics28对定量数据进行分析,以进行描述性分析和分组比较。定性深入访谈的目的是全面了解个人经历,非亲属护理人员队列成员的动机和支持需求,在性别方面尽可能不同的人,社会经济地位,和设施与德语。访谈的定性数据将使用MAXQDA软件进行检查,采用扎根理论的方法进行分析。
    结论:这项研究将开发一个全面的框架,以捕获非亲属护理人员在生命末期的细微差别经历。该框架将确定缺乏对非亲属护理人员的支持以及需要进一步研究的领域。
    背景:该研究在德国临床试验注册(DeutschesRegisterKlinischerStudien)(注册N°DRKS00033889;注册日期:2024年4月5日)中进行了前瞻性注册。该研究可在世界卫生组织的国际临床试验注册平台搜索门户下进行搜索,在德国临床试验登记号下。
    BACKGROUND: The role of non-kin caregivers, such as friends, neighbours, and acquaintances, in providing end-of-life care is significant but often overlooked in research and policy discussions. These caregivers provide extensive support for individuals in end-of-life care, in addition to or instead of family members. However, there is limited evidence in the literature regarding the experiences, burdens, and benefits of non-kin caregivers.
    OBJECTIVE: The aim of this research is to examine the role and contributions of non-kin caregivers in end-of-life care. The study intends to uncover their experiences, associated challenges, benefits, and requirements for support.
    METHODS: In order to achieve this objective, a mixed-methods approach will be employed, gathering data through structured questionnaires from approximately 150 non-kin caregivers and in-depth interviews with up to 25 participants. The questionnaires will measure the impact, burden, and benefits of caregiving. The Burden Scale for Family Caregivers, the Benefits of Being a Caregiver Scale, the Family Inventory of Needs, the Positive Mental Health Scale, a Graphic Closeness Scale, and selected items of the Eurofamcare Common Assessment Tool for socio-demographic and caregiving-related data will be used. Quantitative data will be analysed using IBM SPSS Statistics 28 for descriptive analysis and group comparison. The objective of the qualitative in-depth interviews is to obtain a comprehensive picture of the personal experiences, motivations and support needs of members of the non-kin caregivers cohort, who are as heterogeneous as possible in terms of gender, socio-economic status, and facility with the German language. The qualitative data from the interviews will be examined using MAXQDA software, adopting a grounded theory approach for analysis.
    CONCLUSIONS: This research will develop a comprehensive framework that captures the nuanced experiences of non-kin caregivers at the end of life. The framework will identify areas where support for non-kin caregivers is lacking and where further research is needed.
    BACKGROUND: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00033889; date of registration: 05 April 2024). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.
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  • 文章类型: Journal Article
    临终谵妄影响绝大多数患者在死亡前。这是非常痛苦的,往往与不安或激动有关。与其他环境中的谵妄不同,它被认为是不可逆转的,和非药物措施可能不太可行。这篇综述的目的是对姑息治疗环境中谵妄的临床试验进行深入讨论,特别关注研究药物干预治疗临终谵妄的研究。迄今为止,只有六项随机试验研究了姑息治疗人群的药理学选择,只有两个人专注于临终谵妄。这些研究表明,精神安定药和苯并二氮卓类可能有助于控制与临终谵妄相关的终末躁动或躁动。然而,现有研究在方法学上有很大的局限性.需要进一步的研究来证实这些发现,并研究新的治疗方案来管理这种令人痛苦的综合征。
    End-of-life delirium affects a vast majority of patients before death. It is highly distressing and often associated with restlessness or agitation. Unlike delirium in other settings, it is considered irreversible, and non-pharmacologic measures may be less feasible. The objective of this review is to provide an in-depth discussion of the clinical trials on delirium in the palliative care setting, with a particular focus on studies investigating pharmacologic interventions for end-of-life delirium. To date, only six randomized trials have examined pharmacologic options in palliative care populations, and only two have focused on end-of-life delirium. These studies suggest that neuroleptics and benzodiazepines may be beneficial for the control of the terminal restlessness or agitation associated with end-of-life delirium. However, existing studies have significant methodologic limitations. Further studies are needed to confirm these findings and examine novel therapeutic options to manage this distressing syndrome.
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