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

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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.