Certain death in uncertain time: a qualitative study of the experience of advanced ovarian cancer.

现代医学的目标是为危及生命的疾病找到有效的治疗方法。然而，很少能找到治愈的方法。更典型的是，迅速致命的疾病逐渐变得不那么迅速致命。因此，有一类病人肯定他们会死于他们的疾病或相关因素，但他们同样不确定他们是否还有几周或几年的时间。我们很难讨论这种困境，因为我们甚至没有一个名称来描述它，更不用说一个有用的术语来描述它了。此外，他们剩余生活的质量以及他们得到的护理质量在很大程度上取决于支持他们的社会系统内的理解和沟通质量。在发达国家，越来越多的患者属于这一类，包括每年被诊断患有晚期卵巢癌的1200名澳大利亚妇女。本研究旨在通过招募20名晚期卵巢癌女性患者，并在三年内每隔几个月对她们进行一次访谈，来增加我们对在不确定时间内死亡的理解。这项研究将探索晚期卵巢癌患者经历的各个方面，并为它产生一个术语-一个从女性自己的语言中产生的术语。这项研究将为卵巢癌妇女的临床护理和服务的组织和提供提供信息。它还将为患者教育计划提供信息，并帮助调整医学教育，以适应在不确定的时间内经历死亡确定性的患者的特殊需求和感知。最后，研究人员还将探讨这些发现对医学伦理和卫生法以及癌症医学中的沟通，信息和决策的影响。

Modern medicine aims to find effective treatments for life-threatening diseases. Cures are seldom found, however. More typically, rapidly fatal diseases gradually become less rapidly fatal. Consequently, there is a category of patients who are certain they will die from their disease or a related factor, but who are equally uncertain as to whether they have weeks or years left to live. It is difficult to discuss this predicament because we do not even have a name for it, let alone a useful terminology to describe it. The absence of discussion exacerbates patients' social isolation. Also, the quality of their remaining life, and the quality of the care they get, depends heavily on the quality of understanding and communication within the social systems that support them. A growing proportion of patients in developed countries fall into this category, including the 1200 Australian women who are diagnosed each year with advanced ovarian cancer. This study aims to increase our understanding of the experience of certain death in uncertain time by recruiting a group of 20 women with advanced ovarian cancer, and interviewing them every few months over three years. The study will explore all aspects of the experience of having advanced ovarian cancer, and generate a terminology for it - one that grows out of the women's own language. The study will inform the organisation and delivery of clinical care and services to women with ovarian cancer. It will also inform patient education programs, and help to tune medical education to the particular needs and perceptions of patients who are experiencing the certainty of death in uncertain time. Finally, the researchers will also explore the implications of the findings for medical ethics and health law, and for communication, information and decision-making in cancer medicine.