PDF(Pubmed)
Abstract：
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.
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.
摘要：
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。
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。
