Duke-National University of Singapore Graduate Medical School, Singapore.
Palliat Support Care. 2013 Feb;11(1):37-46. doi: 10.1017/S1478951511000691. Epub 2012 Mar 1.
The aim of this study was to examine the concept of a good death from the perspectives of both the dying person and the family caregiver, as perceived by bereaved family caregivers of advanced cancer patients.
The data were gathered from five focus group discussions and one face-to-face qualitative interview conducted over 8 months among 18 bereaved family caregivers recruited from a local hospice. The transcripts of the focus groups and the interview were entered into NVivo Version 8 and were analyzed using the thematic approach.
A good death may be understood as having the biopsychosocial and spiritual aspects of life handled well at the end of life. Five major themes were identified. These were preparation for death, family and social relationships, moments at or near death, comfort and physical care, and spiritual well-being. Differences were also noted in what is important at the end of life between the patients and caregivers. Having a quick death with little suffering was perceived to be good by the patient, but the family caregiver wanted to be able to say a final goodbye to the patient. Patients tend to prefer not to die in their children's presence but the children wished to be present for the final moment. In addition, family caregivers reported it was important for them to be able to give the patients permission to die, to feel recognized for the efforts made, and to have had a fulfilling caregiving experience.
Whereas there are global attributes of a good death, our findings suggest that patients and family caregivers may define a good death differently. Therefore, there is a need to respect, address, and reconcile the differences, so that all parties may have a good experience at the end of a person's life.
本研究旨在探讨晚期癌症患者临终者及其家属照顾者对善终概念的看法。
在 8 个月的时间里，从当地临终关怀机构招募了 18 名丧亲的家庭照顾者，通过 5 个焦点小组讨论和 1 个面对面的定性访谈收集数据。将焦点小组和访谈的文字记录输入 NVivo 版本 8，并采用主题分析方法进行分析。
善终可以理解为在生命的最后阶段处理好身心社会和精神方面的问题。确定了 5 个主要主题。这些主题包括为死亡做准备、家庭和社会关系、接近死亡或死亡时的时刻、舒适和身体护理以及精神福祉。患者和照顾者在生命末期的重要事项上也存在差异。患者认为没有痛苦的快速死亡是好的，但照顾者希望能够与患者最后道别。患者倾向于不希望在孩子面前去世，但孩子们希望能在最后一刻陪伴。此外，照顾者报告说，他们能够给予患者死亡的许可、为所做的努力得到认可以及有一个充实的照顾体验是很重要的。
虽然有全球范围内的善终属性，但我们的研究结果表明，患者和家属照顾者可能对善终有不同的定义。因此，有必要尊重、解决和调和这些差异，以便所有各方在一个人的生命结束时都能有一个好的体验。
