Palliative sedation

姑息性镇静
  • 文章类型: Journal Article
    背景:尽管全球接受姑息镇静,中国在这一领域的参与仍然相对受到限制。关于临终关怀护士关于姑息镇静的态度和经验的信息很少。目的:本调查旨在调查中国临终关怀护士对姑息镇静的态度,以及他们在姑息镇静中的做法。设计:一项横断面描述性研究。设置/主题:2023年,在中国最大的全国临终关怀护理新进展研讨会开幕式上介绍了姑息镇静的调查。随后,研究问卷通过电子邮件分发给参加会议的806名临终关怀护士.测量/结果:统计分析基于641个有效响应。其中,508没有姑息镇静的经验,只有133人有过这样的经历。约92.5%有姑息性镇静经验的临终关怀护士同意医生的指示开始姑息性镇静。几乎所有病例(97.0%)在镇静开始时都有护士在场,大多数医生(79.7%)和家庭成员(82.0%)也在场。然而,8.3%的人认为姑息镇静和安乐死没有区别。此外,13.5%的参与者认为姑息镇静的目的是加速死亡。结论:临终关怀护士在姑息镇静过程中起着至关重要的作用,然而,他们也面临着重大挑战。这表明,中国迫切需要制定姑息镇静的共识或指南,以明确团队成员的角色,包括临终关怀护士.
    Background: Despite the global acceptance of palliative sedation, China\'s engagement in this field remains comparatively restricted. There exists a scarcity of information regarding the attitudes and experiences of hospice nurses concerning palliative sedation. Objectives: This survey aimed at investigating the attitudes of Chinese hospice nurses toward palliative sedation, as well as their practices in palliative sedation. Design: A cross-sectional descriptive study. Setting/Subjects: In 2023, the survey on palliative sedation was introduced during the opening ceremony of the largest National Symposium on New Advances in Hospice Nursing in China. Subsequently, the study questionnaire was disseminated through email to a cohort of 806 hospice nurses attending the conference. Measurements/Results: The statistical analysis was based on 641 valid responses. Among them, 508 had no experience with palliative sedation, while only 133 had such experience. Around 92.5% of hospice nurses with experience in palliative sedation agreed with the physician\'s instructions to begin palliative sedation. Nurses were present at the start of sedation in nearly all cases (97.0%), and most doctors (79.7%) and family members (82.0%) were also present. However, 8.3% of them perceived that there was no difference between palliative sedation and euthanasia. Furthermore, 13.5% of participants believed that the purpose of palliative sedation was to hasten death. Conclusions: Hospice nurses play a crucial role in the process of palliative sedation, yet they also face significant challenges. It suggests that there is an urgent need in China for the development of consensus or guidelines for palliative sedation to clarify the roles of team members, including hospice nurses.
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  • 文章类型: Journal Article
    背景:姑息镇静的实践继续引起人们的伦理问题,这反过来又导致了它在不同地区的不同接受和实践。作为姑息镇静欧洲联盟(欧盟)项目的一部分,本研究的目的是确定姑息治疗专家对八个欧洲国家姑息镇静实践的看法(荷兰,比利时,德国,英国,意大利,西班牙,匈牙利,和罗马尼亚)。
    方法:专门设计的调查,包括最常用的姑息镇静药物的问题,它们按国家和设置的可用性,并将姑息镇静的适当做法的障碍和促进者发送给了在指定国家参与姑息治疗且知识渊博的专家临床医生.使用有目的的抽样策略来选择每个联盟国家至少18名参与的临床医生。对调查数据进行描述性统计分析。
    结果:在邀请参加的208名专家临床医生中,124名参与者完成了调查。咪达唑仑被认为是所有八个国家中最常用的苯二氮卓类药物。86%和89%的专家临床医生在德国和意大利,分别,认为咪达唑仑“几乎总是”,而在匈牙利和罗马尼亚,只有大约50%或更少的受访者认为这一点。左甲丙嗪是在荷兰最常被认为用于姑息镇静的抗精神病药。西班牙,德国,和英国。在所有八个国家的专家临床医生中,有38-86%的人认为,在姑息镇静期间“几乎总是”使用阿片类药物。对静脉补水和人工营养的感知使用“几乎总是”普遍较低,而在这个国家,静脉补水和人工营养都被认为是“经常”由三分之一的专家临床医生提供的,在匈牙利,36%和27%,分别。
    结论:我们的研究提供了8个欧洲国家在姑息性镇静过程中感知用药实践的差异。与罗马尼亚和匈牙利等中欧和东欧国家相比,在姑息治疗服务已建立的国家中,对姑息镇静期间药物使用的认识更长,更符合建议的欧洲指南。
    BACKGROUND: The practice of palliative sedation continues to raise ethical questions among people, which in turn leads to its varied acceptance and practice across regions. As part of the Palliative Sedation European Union (EU) project, the aim of the present study was to determine the perceptions of palliative care experts regarding the practice of palliative sedation in eight European countries (The Netherlands, Belgium, Germany, UK, Italy, Spain, Hungary, and Romania).
    METHODS: A specifically designed survey, including questions on the most frequently used medications for palliative sedation, their availability per countries and settings, and the barriers and facilitators to the appropriate practice of palliative sedation was sent to expert clinicians involved and knowledgeable in palliative care in the indicated countries. A purposive sampling strategy was used to select at least 18 participating clinicians per consortium country. Descriptive statistical analysis was conducted on the survey data.
    RESULTS: Of the 208 expert clinicians invited to participate, 124 participants completed the survey. Midazolam was perceived to be the most frequently used benzodiazepine in all eight countries. 86% and 89% of expert clinicians in Germany and Italy, respectively, perceived midazolam was used \"almost always\", while in Hungary and Romania only about 50% or less of the respondents perceived this. Levomepromazine was the neuroleptic most frequently perceived to be used for palliative sedation in the Netherlands, Spain, Germany, and the United Kingdom. Between 38- 86% of all eight countries´ expert clinicians believed that opioid medications were \"almost always\" used during palliative sedation. The perceived use of IV hydration and artificial nutrition \"almost always\" was generally low, while the country where both IV hydration and artificial nutrition were considered to be \"very often\" given by a third of the expert clinicians, was in Hungary, with 36% and 27%, respectively.
    CONCLUSIONS: Our study provides insight about the differences in the perceived practice of medication during palliative sedation between eight European countries. In countries where palliative care services have been established longer perceptions regarding medication use during palliative sedation were more in line with the recommended European guidelines than in Central and Eastern European countries like Romania and Hungary.
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  • 文章类型: Journal Article
    目的:本研究旨在调查葡萄牙姑息镇静的实践,缺乏这方面的数据。方法:这是一项前瞻性多中心研究,包括同意参加的每个小组的所有患者。患者被跟踪直到死亡,放电,或随访3个月后。结果:该研究包括8个团队:4个作为姑息治疗单位(PCU),1作为医院姑息治疗小组(HPCT),2作为家庭护理(HC),1为HPCT和HC。在361名患者中,52%是男性,中位年龄为76岁,285人(79%)患有癌症。49例(14%)患者进行了持续镇静:26例(53%)为男性,中位年龄为76岁。大多数病人,46(94%),有肿瘤诊断.只有少数情况下,家庭,16(33%),或者病人,5(10%),参与了镇静的决定。谵妄是导致镇静的最常见症状。最常用的药物是咪达唑仑(65%)。在多变量分析中,只有年龄和综合评分与镇静独立相关;<76岁的患者和痛苦程度较高的患者被镇静的概率较高.结论:葡萄牙连续姑息性镇静的实践在其他研究报告的范围内。一个特别相关的点是患者及其家属在决策过程中的参与程度低。每个团队必须对这方面进行深入的讨论。
    Objective: This study aimed to survey the practice of palliative sedation in Portugal, where data on this subject were lacking. Methods: This was a prospective multicentric study that included all patients admitted to each team that agreed to participate. Patients were followed until death, discharge, or after 3 months of follow-up. Results: The study included 8 teams: 4 as palliative care units (PCU), 1 as a hospital palliative care team (HPCT), 2 as home care (HC), and 1 as HPCT and HC. Of the 361 patients enrolled, 52% were male, the median age was 76 years, and 285 (79%) had cancer. Continuous sedation was undergone by 49 (14%) patients: 26 (53%) were male, and the median age was 76. Most patients, 46 (94%), had an oncological diagnosis. Only in a minority of cases, the family, 16 (33%), or the patient, 5 (10%), participated in the decision to sedate. Delirium was the most frequent symptom leading to sedation. The medication most used was midazolam (65%). In the multivariable analysis, only age and the combined score were independently associated with sedation; patients <76 years and those with higher levels of suffering had a higher probability of being sedated. Conclusions: The practice of continuous palliative sedation in Portugal is within the range reported in other studies. One particularly relevant point was the low participation of patients and their families in the decision-making process. Each team must have a deep discussion on this aspect.
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  • 文章类型: Journal Article
    UNASSIGNED: Palliative sedation (PS) is a therapeutic intervention employed to manage severe and refractory symptoms in terminally ill patients at end of life. Inconsistencies in PS practice guidelines coupled with clinician ambiguity have resulted in confusion about how PS is best integrated into practice. Understanding the perspectives, experiences, and practices relating to this modality will provide insight into its clinical application and challenges within the palliative care landscape.
    UNASSIGNED: The aim is to explore the perspectives of palliative care physicians administering PS, including how practitioners define PS, factors influencing decision making about the use of PS, and possible reasons for changes in practice patterns over time.
    UNASSIGNED: A survey (n = 37) and semistructured interviews (n = 23) were conducted with palliative care physicians throughout Ontario. Codes were determined collaboratively and applied line-by-line by two independent investigators. Survey responses were analyzed alongside interview transcripts and noted to be concordant. Themes were generated through reflexive thematic analysis.
    UNASSIGNED: Five key themes were identified: (1) lack of standardization, (2) differing definitions, (3) logistical challenges, (4) perceived \"back-up\" to Medical Assistance in Dying, and (5) tool of the most responsible physician.
    UNASSIGNED: There was significant variability in how participants defined PS and in frequency of use of PS. Physicians described greater ease implementing PS when practicing in palliative care units, with significant barriers faced by individuals providing home-based palliative care or working as consultants on inpatient units. Educational efforts are required about the intent and practice of PS, particularly among inpatient interprofessional teams.
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  • 文章类型: Journal Article
    背景:姑息治疗中有关镇静的术语问题以及对研究和临床决策的影响经常被报道。目标:收集有关姑息治疗中镇静实践定义在临床病例中应用的数据,并分析高质量定义的含义。设计:我们进行了一项在线调查,其中包括参与制定姑息治疗镇静指南的国际专家和欧洲姑息治疗协会(EAPC)成员。要求参与者将四个已发布的定义应用于四个案例小插曲。数据采用描述性统计分析。结果:共有32名专家和271名EAPC成员完成了调查。这些定义在n=2200/4848例(45.4%)中正确应用。定义正确应用的平均次数(最多4分。)对于SedPall研究组的定义为2.2±1.14,EAPC定义为1.8±1.03,1.7±0.98对于挪威医学协会的定义,日本姑息医学学会的定义为1.6±1.01。16个小插图定义对的正确应用率在70/303(23.1%)和227/303(74.9%)之间变化。定义和插图的内容以及自由文本注释解释了参与者的决定和误解。结论:姑息治疗中镇静的定义经常错误地应用于简化条件下的临床病例。这表明,临床沟通和研究可能会受到误解和数据标签或报告不一致的负面影响。临床试验登记号:DRKS00015047。
    Background: Terminological problems concerning sedation in palliative care and consequences for research and clinical decision making have been reported frequently. Objectives: To gather data on the application of definitions of sedation practices in palliative care to clinical cases and to analyze implications for high-quality definitions. Design: We conducted an online survey with a convenience sample of international experts involved in the development of guidelines on sedation in palliative care and members of the European Association for Palliative Care (EAPC). Participants were asked to apply four published definitions to four case vignettes. Data were analyzed using descriptive statistics. Results: A total of 32 experts and 271 EAPC members completed the survey. The definitions were applied correctly in n = 2200/4848 cases (45.4%). The mean number of correct applications of the definitions (4 points max.) was 2.2 ± 1.14 for the definition of the SedPall study group, 1.8 ± 1.03 for the EAPC definition, 1.7 ± 0.98 for the definition of the Norwegian Medical Association, and 1.6 ± 1.01 for the definition of the Japanese Society of Palliative Medicine. The rate of correct applications for the 16 vignette-definition pairs varied between 70/303 (23.1%) and 227/303 (74.9%). The content of definitions and vignettes together with free-text comments explains participants\' decisions and misunderstandings. Conclusions: Definitions of sedation in palliative care are frequently incorrectly applied to clinical case scenarios under simplified conditions. This suggests that clinical communication and research might be negatively influenced by misunderstandings and inconsistent labeling or reporting of data. Clinical Trial Registration Number: DRKS00015047.
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  • 文章类型: Journal Article
    目的:疼痛管理是姑息治疗的必要组成部分,因为大多数患者在生命的最后阶段都会遭受疼痛。由于生命最后阶段疼痛的复杂原因,重要的是利用药物治疗选项以外的方法来实现充分的疼痛控制。由于对德国临终关怀医院的疼痛治疗知之甚少,进行了全国范围的调查。
    方法:2020年6月通过邮寄方式联系了所有德国临终关怀医院(259家),并要求他们参加匿名横断面调查。
    结果:共有148家(57%)德国临终关怀医院参加了调查。在临终关怀环境中使用了各种各样的药物。安乃近是最常用的非阿片类镇痛药,氢吗啡酮是最常用的阿片类药物,普瑞巴林是最常用的联合镇痛药物。止痛药通常被规定为口服缓释物质。在有反应的收容所中,标准化的治疗方案很少见。大多数受访者还使用补充治疗方案,如芳香(油)疗法或音乐疗法,在疼痛的治疗中。如果所有其他治疗方案均失败,则几乎所有有反应的收容所都使用姑息镇静。
    结论:本调查概述了德国临终关怀医院疼痛管理的治疗方案。使用各种各样的止痛药。与国际文学相比,是否需要如此大量不同类型的止痛药是有争议的,或减少可用药物类型和使用标准化治疗方案是否会使所有相关人员受益。
    OBJECTIVE: Pain management is a necessary component of palliative care as most patients suffer from pain during the final phase of life. Due to the complex causation of pain in the last phase of life, it is important to utilize methods other than pharmacotherapeutic options in order to achieve adequate pain control. As little is known about treatment of pain in German hospices, a nationwide survey was conducted.
    METHODS: All German hospices (259) were contacted by post in June 2020 and asked to participate in an anonymous cross-sectional survey.
    RESULTS: A total of 148 (57%) German hospices took part in the survey. A broad variety of medication is used in the hospice setting. Metamizole is the most commonly used non-opiod analgesic , hydromorphone the most commonly used opioid, and pregabalin is the most commonly prescribed co-analgesic drug. The pain medication is usually prescribed as an oral slow-release substance. Standardized treatment schemes are rare among the responding hospices. Most of the respondents also use complementary treatment options, such as aroma (oil) therapy or music therapy, in the treatment of pain. Palliative sedation is used by nearly all responding hospices if all other treatment options fail.
    CONCLUSIONS: This survey provides an overview of the treatment options for pain management in German hospices. A broad variety of pain medication is used. Compared to international literature, it is debatable whether such a large variety of different types of pain medication is necessary, or whether a reduction in the type of medication available and the use of standardized treatment schemes could benefit everyone involved.
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  • 文章类型: Journal Article
    2009年,Quill和同事规定,生命结束时有三种类型的镇静做法:普通镇静,比例姑息性镇静(PPS),和对无意识的姑息镇静(PSU)。在这三个人中,PPS和PSU被描述为缓解难治性症状的“最后选择”,而PSU是道德上最具争议的类型,“应该相当罕见。\"不幸的是,在美国,人们对生命终结时的实际镇静实践知之甚少。这可能部分是由于缺乏关于临终关怀镇静的概念清晰度。我们认为,直到更多的人知道在生命结束时发生了什么镇静行为,以及如何通过研究和更具体的指导方针来改进实践,“姑息镇静”将比其他情况下更容易被误解和争议。在我们看来,克服在临终关怀中镇静带来的挑战需要:1)关于临床情况和镇静方法的更大的特异性,2)针对重点临床问题的研究,和3)改善镇静实践的培训和保障措施。像PPS和PSU这样的术语在抽象中相对简单易懂,但它们的应用包括各种临床情况和镇静方法。对临终关怀中的镇静实践进行实证研究的一个明显障碍是确定这些要素的挑战,特别是如果没有明确的沟通。此外,我们认为,对姑息治疗专家和其他人员的培训应包括监测和救援技术,以满足所需的能力。
    In 2009, Quill and colleagues stipulated that there are three types of sedation practices at the end of life: ordinary sedation, proportionate palliative sedation (PPS), and palliative sedation to unconsciousness (PSU). Of the three, PPS and PSU are described as \"last-resort options\" to relieve refractory symptoms, and PSU as the most ethically controversial type that \"should be quite rare.\" Unfortunately, little is known about actual sedation practices at the end of life in the United States. This may be due in part to a lack of conceptual clarity about sedation in end-of-life care. We argue that, until more is known about what sedation practices occur at the end of life, and how practices can be improved by research and more specific guidelines, \"palliative sedation\" will remain more misunderstood and controversial than it might otherwise be. In our view, overcoming the challenges posed by sedation in end-of-life care requires: 1) greater specificity regarding clinical situations and approaches to sedation, 2) research tailored to focused clinical questions, and 3) improved training and safeguards in sedation practices. Terms like PPS and PSU are relatively simple to understand in the abstract, but their application comprises various clinical situations and approaches to sedation. An obvious barrier to empirical research on sedation practices in end-of-life care is the challenge of determining these elements, especially if not clearly communicated. Additionally, we argue that training for palliative care specialists and others should include monitoring and rescue techniques as required competencies.
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  • 文章类型: Journal Article
    背景:列治文躁动-镇静量表-姑息版(RASS-PAL)工具是一个简短的观察工具,用于量化患者的躁动或镇静水平。这项研究的目的是在住院姑息治疗单元上实施RASS-PAL工具并评估实施过程。
    方法:使用简短的在线RASS-PAL自学模块和即时护理工具的质量改进实施项目。参与者是在31张病床的住院姑息治疗病房工作的工作人员,他们完成了RASS-PAL自学模块和在线评估调查。
    结果:自我学习模块由49/50(98%)的常规姑息治疗单位工作人员(护士,医师,联合健康,和其他姑息治疗单位工作人员)。定期和临时姑息治疗单位工作人员对自我学习模块的完成率为63/77(82%)。23/50(46%)的定期在姑息治疗单位工作的受访者完成了后续在线评估调查。受访者同意(14/26;54%)或强烈同意(10/26;38%)成功实施了自学模块,100%同意这对他们的教育需求是有效的。
    结论:使用在线自学模块是一种有效的方法,可以使跨专业人员参与和教育RASS-PAL工具,作为实施策略的一部分。
    BACKGROUND: The Richmond Agitation-Sedation Scale - Palliative version (RASS-PAL) tool is a brief observational tool to quantify a patient\'s level of agitation or sedation. The objective of this study was to implement the RASS-PAL tool on an inpatient palliative care unit and evaluate the implementation process.
    METHODS: Quality improvement implementation project using a short online RASS-PAL self-learning module and point-of-care tool. Participants were staff working on a 31-bed inpatient palliative care unit who completed the RASS-PAL self-learning module and online evaluation survey.
    RESULTS: The self-learning module was completed by 49/50 (98%) of regular palliative care unit staff (nurses, physicians, allied health, and other palliative care unit staff). The completion rate of the self-learning module by both regular and casual palliative care unit staff was 63/77 (82%). The follow-up online evaluation survey was completed by 23/50 (46%) of respondents who regularly worked on the palliative care unit. Respondents agreed (14/26; 54%) or strongly agreed (10/26; 38%) that the self-learning module was implemented successfully, with 100% agreement that it was effective for their educational needs.
    CONCLUSIONS: Using an online self-learning module is an effective method to engage and educate interprofessional staff on the RASS-PAL tool as part of an implementation strategy.
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  • 文章类型: Journal Article
    背景:连续深度镇静(CDS)可用于生命末期无法忍受严重症状的患者,否则无法缓解。在荷兰,自2005年以来,CDS的使用受到国家指南的指导。使用CDS的患者比例从2005年的8%增加到2015年的18%。这项研究的目的是根据参与这种做法的医疗保健提供者,探索荷兰使用CDS增加的潜在原因。
    方法:进行半结构化访谈并进行主题分析。参与者是荷兰医疗保健提供者(HCP),在病人家里工作,收容所,老年人护理设施和医院,在提供CDS方面经验丰富,他们是通过有目的的抽样招募的。
    结果:41名卫生保健提供者参加了一次访谈。对于这些HCP,开始CDS的原因通常是导致难治性状态的症状的组合。HCP表明,非身体起源的症状在启动CDS的决定中越来越重要。大多数HCP认为,患者对生命结束时的痛苦较少,他们的亲戚,有时是HCP;他们报告了更多通过使用CDS来减轻痛苦的请求。我们研究中的一些HCP经历了越来越大的执行CDS的压力。一些HCP表示,他们更经常使用间歇性镇静,有时会导致CDS。
    结论:这项研究提供了有关参与的HCP如何感知其CDS实践随时间变化的见解。结合了对HCPs难治性痛苦的更广泛解释和患者临终时对痛苦的耐受性降低,他们的亲戚和HCPs,可能导致启动CDS的阈值降低。
    背景:乌得勒支大学医学中心研究伦理委员会评估,根据荷兰法律(方案编号19-435/C),该研究免于伦理审查。
    BACKGROUND: Continuous deep sedation (CDS) can be used for patients at the end of life who suffer intolerably from severe symptoms that cannot be relieved otherwise. In the Netherlands, the use of CDS is guided by an national guideline since 2005. The percentage of patients for whom CDS is used increased from 8% of all patients who died in 2005 to 18% in 2015. The aim of this study is to explore potential causes of the rise in the use of CDS in the Netherlands according to health care providers who have been participating in this practice.
    METHODS: Semi-structured interviews were conducted and thematically analysed. Participants were Dutch health care providers (HCPs), working at patients\' homes, hospices, elderly care facilities and in hospitals and experienced in providing CDS, who were recruited via purposeful sampling.
    RESULTS: 41 Health care providers participated in an interview. For these HCPs the reason to start CDS is often a combination of symptoms resulting in a refractory state. HCPs indicated that symptoms of non-physical origin are increasingly important in the decision to start CDS. Most HCPs felt that suffering at the end of life is less tolerated by patients, their relatives, and sometimes by HCPs; they report more requests to relieve suffering by using CDS. Some HCPs in our study have experienced increasing pressure to perform CDS. Some HCPs stated that they more often used intermittent sedation, sometimes resulting in CDS.
    CONCLUSIONS: This study provides insight into how participating HCPs perceive that their practice of CDS changed over time. The combination of a broader interpretation of refractory suffering by HCPs and a decreased tolerance of suffering at the end of life by patients, their relatives and HCPs, may have led to a lower threshold to start CDS.
    BACKGROUND: The Research Ethics Committee of University Medical Center Utrecht assessed that the study was exempt from ethical review according to Dutch law (Protocol number 19-435/C).
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  • 文章类型: Journal Article
    背景:在过去十年中,荷兰持续深度镇静(CDS)的发生率增加了一倍以上,虽然这种增长的原因还没有完全理解。患者和亲属在决定CDS中起着至关重要的作用。我们假设CDS实践的增加与患者和亲属在决定CDS中的角色变化有关。
    目的:描述患者和亲属对CDS的看法和经验。这种洞察力可以帮助专业人士和政策制定者更好地理解和应对不断发展的CDS实践。
    方法:对患者和亲属进行了定性访谈,这些患者和亲属有CDS的亲身经历或自己考虑了CDS。
    结果:绝大多数受访者认为CDS是一种姑息治疗选择,没有一个受访者报告(道德)反对CDS。大多数受访者优先考虑避免生命终结时的痛苦。患者和家庭通常认为CDS是他们可以选择的姑息治疗选择。同样,根据我们的受访者,启动CDS的决定是由他们做出的,而不是医生。CDS护理的负面经历主要与失去代理意识有关,由于医疗保健专业人员的沟通或信息提供不足。缺乏护理的连续性也是痛苦的根源。我们观察到受访者对CDS和其他临终关怀决策之间区别的理解多种多样,包括安乐死.一些人认为CDS加速了死亡。
    结论:传统观点认为CDS是医生在生命结束时减轻患者痛苦的最后手段,在患者和亲属中并不明确。相反,我们的研究结果表明,他们认为CDS是一种常规的姑息治疗选择.随着CDS的规范化,患者和亲属声称在决策中有很大的发言权,主要是出于避免痛苦和在生命结束时行使控制的愿望。这些关于患者CDS的不同观点,他们的亲属和医疗保健提供者应在CDS指南和协议中进行协调.
    我们团队的作者之一(G.H.)具有CDS作为亲戚的经验,并确保患者/亲戚的观点在我们研究的设计和实施中得到充分反映。在我们研究的初步阶段,G.H.调整了主题列表,以便更好地适应当前的CDS实践。在数据分析过程中,G.H.阅读了几次采访,并作为作者团队的重要成员参加了关于中心主题和核心概念的公开和批判性讨论,从而保证患者/相对观点在我们最终研究结果中的中心位置。
    BACKGROUND: The incidence of continuous deep sedation (CDS) has more than doubled over the last decade in The Netherlands, while reasons for this increase are not fully understood. Patients and relatives have an essential role in deciding on CDS. We hypothesize that the increase in CDS practice is related to the changing role of patients and relatives in deciding on CDS.
    OBJECTIVE: To describe perceptions and experiences of patients and relatives with regard to CDS. This insight may help professionals and policymakers to better understand and respond to the evolving practice of CDS.
    METHODS: Qualitative interviews were held with patients and relatives who had either personal experience with CDS as a relative or had contemplated CDS for themselves.
    RESULTS: The vast majority of respondents appreciated CDS as a palliative care option, and none of the respondents reported (moral) objections to CDS. The majority of respondents prioritized avoiding suffering at the end of life. The patients and families generally considered CDS a palliative care option for which they can choose. Likewise, according to our respondents, the decision to start CDS was made by them, instead of the physician. Negative experiences with CDS care were mostly related to loss of sense of agency, due to insufficient communication or information provision by healthcare professionals. Lack of continuity of care was also a source of distress. We observed a variety in the respondents\' understanding of the distinction between CDS and other end-of-life care decisions, including euthanasia. Some perceived CDS as hastening death.
    CONCLUSIONS: The traditional view of CDS as a last resort option for a physician to relieve a patient\'s suffering at the end of life is not explicit among patients and relatives. Instead, our results show that they perceive CDS as a regular palliative care option. Along with this normalization of CDS, patients and relatives claim a substantial say in the decision-making and are mainly motivated by a wish to avoid suffering and exercise control at the end of life. These distinct views on CDS of patients, their relatives and healthcare providers should be reconciled in guidelines and protocols for CDS.
    UNASSIGNED: One of the authors in our team (G. H.) has experience with CDS as a relative and ensured that the patient/relative viewpoint was adequately reflected in the design and conduct of our study. In the preliminary phase of our study, G. H. adjusted the topic list so it was better adapted to the current practice of CDS. During the data analysis, G. H. read several interviews and took part in the open and critical discussion on central themes and core concepts as an important member of the author team, thereby guaranteeing the central position of the patient/relative perspective in our final research outcome.
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