International Observatory on End of Life Care, Institute for Health Research, Lancaster University, Lancaster, UK.
Palliat Med. 2010 Mar;24(2):146-53. doi: 10.1177/0269216309350252. Epub 2009 Nov 19.
The aims of this qualitative study were to identify patients' and family members' experiences of acute stroke and their preferences for end-of-life care. Twenty-eight purposely sampled patients with an acute stroke who had high (n = 13) and low (n = 15) disability were selected from 191 sequential cases admitted to two general hospitals in north-east England. In addition, 25 family members of other stroke patients were recruited. Views about current stroke services and preferences for end-of-life care were elicited in semi-structured interviews. Communication between patients and family members and healthcare professionals was consistently highlighted as central to a positive experience of stroke care. Honesty and clarity of information was required, even where prognoses were bleak or uncertain. Patients and family members appeared to attach as much importance to the style of communication as to the substance of the transfer of information. Where decisions had been made to shift the focus of care from active to more passive support, families, and where possible patients, still wished to be included in ongoing dialogue with professionals. Where patients were thought to be dying, family members were keen to ensure that the death was peaceful and dignified. Families reported few opportunities for engagement in any form of choice over place or style of end-of-life care. No family member reported being offered the possibility of the patient dying at home. Uncertainty about prognosis is inevitable in clinical practice, and this can be difficult for patients and families. Our findings demonstrate the importance of improving communication between patient, family and health professionals for seriously ill patients with stroke in UK hospitals.
本定性研究的目的是识别患者和家属在急性中风期间的体验，以及他们对临终关怀的偏好。从英格兰东北部的两家综合医院连续收治的 191 例中风患者中，有 28 例（高残疾组 n = 13，低残疾组 n = 15）经有目的抽样被选入研究。此外，还招募了 25 名其他中风患者的家属。通过半结构化访谈，了解他们对当前中风服务的看法和对临终关怀的偏好。患者及其家属与医疗保健专业人员之间的沟通始终是积极的中风护理体验的核心。需要坦诚和清晰的信息，即使预后黯淡或不确定。患者和家属似乎同样重视沟通方式，也重视信息传递的实质内容。在决定将护理重点从积极治疗转向更被动支持的情况下，家属（如果可能的话，还有患者）仍希望与专业人员进行持续对话。当患者被认为即将死亡时，家属希望确保死亡是平静而有尊严的。家属报告说，他们几乎没有机会参与任何形式的选择，无论是临终关怀的地点还是方式。没有家属报告说有机会让患者在家中去世。在临床实践中，对预后的不确定性是不可避免的，这对患者和家属来说都是困难的。我们的研究结果表明，改善英国医院中风重病患者的患者、家属和医疗保健专业人员之间的沟通非常重要。
