Borreani Claudia, Miccinesi Guido
Psychology Unit, National Cancer Institute, Milan, Italy.
Curr Opin Support Palliat Care. 2008 Mar;2(1):54-9. doi: 10.1097/SPC.0b013e3282f4cb27.
This review considers how end of life care preferences have been dealt with recently in the scientific literature.
The ability to make decisions about one's own dying and death is commonly considered a necessary component of a 'good death'. It is important to allow people to express, if they wish, their end of life preferences. Most of the studies were conducted in patients at advanced stages of terminal illness and involved asking them about what their wishes would be in certain scenarios. Half of the papers specifically addressed the issues of life-shortening medical decisions. On considering the findings of the various studies reported in detail here, it becomes clear that end of life preferences would best be studied using a longitudinal design, because of the fluctuation of these preferences over time and their association with dynamic components of quality of life, such as functional status, and psychosocial and spiritual dimensions.
Both patients and health care workers can be assisted in addressing the issue of what is the right time for a patient to record their preferences, in recognizing psychological defences and their evolution during the end of life process, and in managing conflicts and suffering in the patient-family unit. Guidelines and practical tools have begun to be designed and tested.
本综述探讨了近期科学文献中关于临终关怀偏好的处理方式。
人们普遍认为能够自主决定自己的临终和死亡方式是“善终”的必要组成部分。如果人们愿意，允许他们表达临终偏好非常重要。大多数研究针对的是晚期绝症患者，涉及询问他们在某些情况下的意愿。一半的论文专门讨论了缩短生命的医疗决策问题。考虑到此处详细报告的各项研究结果，很明显，由于这些偏好会随时间波动，且与生活质量的动态组成部分（如功能状态、心理社会和精神层面）相关联，因此采用纵向设计来研究临终偏好最为合适。
在确定患者记录其偏好的合适时间、认识临终过程中的心理防御及其演变，以及处理患者-家庭单元中的冲突和痛苦等问题上，患者和医护人员都可以得到帮助。相关指南和实用工具已开始设计和测试。
