hospice

临终关怀
  • 文章类型: Journal Article
    呼吸困难,呼吸困难的主观感觉,1与机械通气相关的呼吸困难可能导致重症监护病房(ICU)相关的创伤后应激障碍和生活质量受损2呼吸困难既难以缓解,也是患者严重困扰的原因,他们所爱的人,和护理提供者3患有神经肌肉疾病的人,如肌萎缩侧索硬化(ALS)或重症肌无力(MG),由于进行性呼吸肌无力和麻痹的并发症,在疾病晚期经常依赖呼吸机4当无法从呼吸机上断奶时,对话转向护理目标,并从呼吸机释放,以实现舒适和生命终结(EOL)。患有和不患有神经肌肉疾病的患者在呼吸机释放后在EOL下呼吸困难的风险很高。尽管已经发表了针对ALS患者的有限建议,目前尚无针对神经肌肉疾病引起的呼吸肌功能不全患者的机械通气终末期释放的指南.需要对此主题进行进一步的研究,包括制定神经肌肉疾病患者呼吸机释放方案。以下病例报告详细介绍了两名患有不同形式的神经肌肉疾病的患者的不同EOL经历。
    Dyspnea, the subjective sensation of breathlessness, is a distressing and potentially traumatic symptom. Dyspnea associated with mechanical ventilation may contribute to intensive care unit (ICU) associated post-traumatic stress disorder and impaired quality of life. Dyspnea is both difficult to alleviate and a cause of significant distress to patients, their loved ones, and care providers People living with neuromuscular disease, such as amyotrophic lateral sclerosis (ALS) or myasthenia gravis (MG), often rely on a ventilator at late stages of illness due to complications of progressive respiratory muscle weakness and paralysis. When unable to wean from the ventilator, conversations turn towards goals of care and release from the ventilator for comfort and end of life (EOL). Patients with and without neuromuscular disease have high risk for dyspnea at EOL upon ventilator liberation. Although limited recommendations have been published specific to patients with ALS, no guidelines currently exist for the terminal liberation from mechanical ventilation in patients experiencing respiratory muscle insufficiency from a neuromuscular disease. Further research on this topic is needed, including creation of a protocol for ventilator release in patients with neuromuscular disease. The following case reports detail the dissimilar EOL experiences of two patients with different forms of neuromuscular disease.
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  • 文章类型: Journal Article
    儿科家庭临终关怀和姑息治疗是更大的儿科姑息治疗领域中日益增长的重要子领域。尽管有研究表明儿科家庭临终关怀和姑息治疗的临床和全身疗效,它的最佳发展仍然存在障碍,实施,以及传播和最佳临床实践知识的差距。本案例系列介绍了儿科家庭临终关怀和姑息治疗中普遍存在的挑战的具体例子,以期指导未来的研究。教育,倡导,和项目开发工作。
    Pediatric home-based hospice and palliative care is a growing and important sub-field within the larger pediatric palliative care landscape. Despite research demonstrating the clinical and systemic efficacy of pediatric home-based hospice and palliative care, there remain barriers to its optimal development, implementation, and dissemination as well as best clinical practice knowledge gaps. This case series presents specific examples of ubiquitous challenges in pediatric home-based hospice and palliative care in hopes of guiding future research, education, advocacy, and program development efforts.
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  • 文章类型: Journal Article
    近年来,加利福尼亚州的收容所经历了重大而复杂的所有权变化。关于这些所有权变更对临终关怀的影响知之甚少。我们纵向的目的,回顾性描述性研究旨在描述影响加利福尼亚州2018年至2021年临终关怀医院的所有权变化。使用描述性统计数据,我们利用加州家庭健康机构和临终关怀年度利用报告的公开数据,测量了有或没有所有权变更的临终关怀医院的特征.所有权变化特征是通过公开的临终关怀提供者和设施数据进行测量的。还通过公开的纬度和经度数据测量了空间特征。我们的研究结果表明,所有权的变化是显著和复杂的。营利性组织涌入加州市场是这些变化的主要原因。此外,缺乏公司财务公开披露和自愿临终关怀认证,认证,报告导致缺乏自由,公开可用,关于营利性临终关怀所有权的明确综合数据。这阻碍了有关收容所的信息收集和提供者/家庭选择。我们的研究提供了对所有权变更的影响和缺乏确定性的关键见解,免费,关于加州成人收容所照顾儿童的公开信息,具有重要的临床意义,研究,和政策影响。
    Hospices in California have undergone significant and complicated ownership changes in recent years. Little is known about the impact of these ownership changes on hospices. The purpose of our longitudinal, retrospective descriptive study was to describe the ownership changes impacting hospices 2018 to 2021 in California. Using descriptive statistics, we measured characteristics of hospices with and without ownership changes employing public data from the California Home Health Agencies and Hospice Annual Utilization Report. Ownership change characteristics were measured via publicly available hospice provider and facility data. Spatial characteristics were additionally measured via latitude and longitude publicly available data. Our findings showed that ownership changes were significant and complicated. An influx of for-profit organizations into the California market was primarily responsible for these changes. Additionally, lack of corporate financial public disclosure and voluntary hospice accreditation, certification, and reporting result in a lack of free, publicly available, definitive comprehensive data on for-profit hospice ownership. This hinders information gathering on and provider/familial choice-making regarding hospices. Our study provides critical insight into the impact of ownership changes and lack of definitive, free, publicly available information on adult hospices in California caring for children and has important clinical, research, and policy implications.
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  • 文章类型: Journal Article
    左心室辅助装置(LVAD)是一种生命支持类型,具有允许接受者在医院外生活的独特质量。本病例报告探讨了患者及其家人在痴呆症背景下退出LVAD治疗的决定,由于患者的同时机敏性和决策能力不足,顾问团队的建议彼此不一致。然后讨论了导致LVAD治疗退出的指导原则以及从护理团队的经验中吸取的教训。
    Left ventricular assistance devices (LVADs) are one type of life support with the unique quality of allowing recipients to live outside the hospital. This case report explores the decision by a patient and their family to withdraw LVAD therapy in the setting of dementia and consultant team recommendations at odds with one another due to the patient\'s simultaneous alertness and lack of decisional capacity. It then discusses the guiding principles that led to the withdrawal of LVAD therapy and lessons drawn from the experience by the care team.
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  • 文章类型: Journal Article
    幸福是灵性的核心,但在姑息治疗中却很少被探索。这项研究的目的是探索荷兰临终关怀中的幸福感。使用了由参与式观察和半结构化访谈组成的案例研究设计。幸福与健康的各个方面有关。患者谈到与自己和他人的接受度越来越高,联系也越来越深。临终关怀人员将他们的幸福与感受到真正的联系联系联系起来,他们的工作支持他们以新的方式欣赏自己的生活。这项研究表明,幸福可以在经常与痛苦相关的环境中找到。
    Happiness is central in spirituality but has hardly been explored in palliative care. The objective of this study is to explore happiness in hospice care in the Netherlands. A case study design consisting of participatory observations and semi-structured interviews was used. Happiness was associated with all dimensions of health. Patients spoke about a growing receptivity and a deepening of connections with themselves and others. Hospice staff related their happiness to feeling a true connection and their work supported them in appreciating their own lives in new ways. This study suggests that happiness can be found in settings that are frequently associated with suffering.
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  • 文章类型: Journal Article
    临终关怀包括关注我们患者的护理目标和良好的症状管理。这与关注他们的舒适度相吻合,尊严,和尊重。和女同性恋一起工作,同性恋,双性恋,变性人,酷儿和/或询问(LGBTQ+)临终关怀服务的患者对医务人员来说可能是一个挑战。这些潜在挑战中的许多与缺乏医疗专业人员的培训有关。与不确定为LGBTQ的患者相比,这些患者通常会接受歧视性护理。此案例研究描述了一名被分配到退伍军人事务社区生活中心(CLC)临终关怀服务的男性出生退伍军人,入院后,告知工作人员继续进行性别重新分配的强烈愿望。尽管预后为6个月,与退伍军人一起帮助实现这些目标,支持提供性别转变信息的医疗计划,在这个困难的时刻,专注于用适当的代词来解决退伍军人对我们的医疗团队的支持至关重要。
    Hospice care involves focusing on our patients\' goals of care and good symptom management. This coincides with a focus on their comfort, dignity, and respect. Working with lesbian, gay, bisexual, transgender, queer and/or questioning (LGBTQ+) patients on a hospice service can be challenging for medical staff. Many of these potential challenges relate to lack of training of medical professionals. These patients often receive discriminatory care compared to those who do not identify as LGBTQ+. This case study describes an assigned-male-at-birth Veteran admitted to a Veterans Affairs Community Living Center (CLC) hospice service who, after admission, informed staff of the strong desire to go forward with gender reassignment. Despite a prognosis of 6 months, working with the Veteran to help achieve these goals, supporting the medical plans for providing gender-transition information, and focusing on addressing the Veteran with appropriate pronouns were critical to our medical team\'s support for our Veteran at this difficult time.
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  • 文章类型: Journal Article
    2020年,收容所为172万医疗保险患者及其护理人员提供了支持。对于护理人员来说,临终体验可能很困难,许多人经历焦虑,抑郁症,和自杀。很少有文献探讨了临终关怀社会工作者在解决和治疗护理人员自杀想法和行为方面的作用。本文将探讨临终关怀护理人员自杀这一话题,使用案例研究来说明相关问题,实践,和需要。包括对临终关怀社会工作实践的影响。
    In 2020, hospices supported 1.72 million Medicare patients and their caregivers. The end-of-life experience can be difficult for caregivers and many experience anxiety, depression, and suicidality. Little literature has explored the role of hospice social workers in addressing and treating caregivers\' suicidal thoughts and behaviors. This paper will explore the topic of hospice caregiver suicide, using a case study to illustrate relevant issues, practices, and needs. Implications for hospice social work practice are included.
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  • 文章类型: Journal Article
    需要确定在英国的眼科组织的额外供应途径。本文报告了一项全国性研究的结果,该研究探索了英格兰三个临终关怀(HC)和三个医院姑息治疗服务(HPC)的眼部捐赠(ED)的潜力。本文中提出的目标是i.)在六个临床地点建立潜在眼睛供体群体的大小并描述其临床特征;ii.)以确定临床医生在应用标准ED标准评估患者资格方面面临的挑战。回顾性评估1199例死亡患者病例记录,601临终关怀和598医院姑息治疗服务,根据目前的眼部捐赠标准。然后根据相同的标准对临床医生进行评估。由国家卫生服务血液和移植组织服务部门(NHSBT-TS)的专家提供。评估和评价的结果报告为描述性统计(数值数据)。自由文本评论框有助于澄清和/或证明审查和评价决定的合理性。1199名死亡患者中有46%(n=553)被认为有资格接受眼部捐赠(临终关怀设置=56%(n=337);姑息治疗设置=36%(n=216)。对于所有符合条件的病例(n=553),仅在14例(3%)中,ED的选择被记录为与家庭成员一起提出。在本研究中,存在来自临床场所的眼部捐赠的显著潜力。这种潜力目前尚未实现。
    There is a need to identify additional routes of supply for ophthalmic tissue in the UK. This paper reports the findings from a national study exploring the potential for eye donation (ED) from three Hospice Care (HC) and three Hospital Palliative Care Services (HPC) in England. The objectives addressed in this paper are i.) to establish the size and describe the clinical characteristics of the potential eye donor population across six clinical sites; ii.) to identify challenges for clinicians in applying the standard ED criteria for assessing patient eligibility. Retrospective assessment of 1199 deceased patient case notes, 601 Hospice Care and 598 Hospital Palliative Care services, against current eye donation criteria. Clinicians\' assessments were then evaluated against the same criteria. by specialists based at the National Health Service Blood and Transplant Tissue Services division (NHSBT-TS). Results of the assessment and evaluation are reported as descriptive statistics (numerical data). Free-text comment boxes facilitated clarification and/or justification of review and evaluation decisions. 46% (n = 553) of 1199 deceased patients\' notes were agreed as eligible for eye donation (Hospice care settings = 56% (n = 337); Palliative care settings = 36% (n = 216). For all eligible cases (n = 553) the option of ED was recorded as being raised with family members in only 14 cases (3%). Significant potential exists for eye donation from the clinical sites in this study. This potential is not currently being realised.
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  • 文章类型: Journal Article
    COVID-19大流行在许多方面影响了医疗保健行业。新加坡收容所的社会安全措施包括停止志愿服务等非必要服务。文献表明,志愿者在接受临终关怀服务时对提高患者的生活质量很有价值。他们为患者提供所需的陪伴,以及有意义的活动,例如在动物辅助活动中将宠物带入病房。在COVID-19大流行期间,远程医疗的兴起引起了人们对虚拟志愿服务的兴趣,例如虚拟动物辅助活动(VAAA)。然而,目前缺乏有关虚拟志愿服务的文献,因为其需求增加是最近的趋势。通过VAAA的两个回顾性案例研究描述了新加坡临终关怀医院的虚拟志愿服务。这些案例研究表明,可以通过虚拟平台有效地建立治疗联盟。虚拟志愿服务的好处包括使一些患者能够持续提供服务和增加舒适度,因为与现实生活中的动物互动相比,虚拟互动可以减少恐吓。虚拟志愿服务可以被视为补充面对面的志愿服务在临终关怀作为正常做法的一部分。
    The COVID-19 pandemic has impacted the healthcare sector in many ways. Social safety measures in hospices in Singapore include cessation of non-essential services such as volunteering. Literature shows that volunteers are valuable in enhancing the quality of life of patients in receiving hospice services. They provide patients with needed companionship, and meaningful activities such as bringing their pets into the wards in animal-assisted activities. The rise of telehealth during the COVID-19 pandemic brought an increasing interest in virtual volunteering such as virtual animal-assisted activities (VAAA). However, there is currently a lack of literature on virtual volunteering as its increased demand is a recent trend. Virtual volunteering in a hospice in Singapore is described through two retrospective case studies of VAAA. These case studies showed that a therapeutic alliance can be effectively built via virtual platforms. Benefits of virtual volunteering include enabling continued service delivery and increased comfort for some patients as virtual interactions can be less intimidating as compared to interacting with an animal in real life. Virtual volunteering may be considered to complement face-to-face volunteering in end-of-life care as part of normal practice.
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  • 文章类型: Review
    许多参加临终关怀或姑息治疗的人在他们的生活中可能经历过创伤,有些进展为创伤后应激障碍。当这些人面临限制生命的疾病时,创伤可能会重新出现。因此,身体和情绪健康可能会由于创伤相关症状的恶化而受到影响,比如焦虑,烦躁,或闪回。提供创伤知情护理可以帮助减轻创伤对那些面临生命限制性疾病的人的影响,他们可能由于预后有限而无法忍受正式的创伤治疗。疲劳,或缺乏参与治疗的意愿。这篇叙述性评论的目的是描述衰老和临终经历如何导致与以前的创伤经历重新接触,使用基于案例的例子,为跨专业的临终关怀或姑息治疗团队的所有成员提供有关如何引起和应对创伤史的建议,以最大程度地减少创伤在临终时的潜在负面影响。
    Many individuals who present for hospice or palliative care might have experienced trauma during their lives, with some progressing to post-traumatic stress disorder. As these individuals face life-limiting illness, trauma might resurface. Consequently, physical and emotional health might suffer due to exacerbation of trauma-related symptoms, such as anxiety, irritability, or flashbacks. Providing trauma-informed care can help mitigate the effects of trauma for those facing life-limiting illness who might not be able to tolerate formal trauma treatment due to limited prognosis, fatigue, or lack of willingness to engage in treatment. The goal of this narrative review is to describe how aging and the end-of-life experience can lead to a re-engagement with previous traumatic experiences and, using case-based examples, provide recommendations for all members of the interprofessional hospice or palliative care team on how to elicit and respond to a history of trauma to minimize the potential negative impact of trauma at end-of-life.
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