Unmet needs and unfulfilled wishes at the end of life: A population-based mortality follow back study

Improving care for those at the end of life is important for Canadians. There are many more of us living to be old, approaching death with prolonged experiences of multiple chronic diseases. Although our knowledge about health service use at the end of life is improving, we have much more to learn. Among cancer patients differences in health service use is seen, such as the low use of specialized palliative care by the elderly. However, we do not know if these differences in services used are influenced by variations in patient needs or the choices they make as death approaches. It is also time to expand our knowledge to include those who died of chronic diseases other than cancer. Obtaining this information from dying persons is difficult for them and time consuming. Therefore, we plan to examine the experience of end-of-life care (EOLC) among adults in Nova Scotia, from the family's, or key informant's, perspective. In this study we will examine, from the key informant's perspective, (1) the needs of Nova Scotians during the end of life and what proportion of people had those needs met, (2) whether their wishes or care preferences regarding EOLC were fulfilled, (3) the satisfaction with EOLC received, and (4) the effect of age, sex and location of care on satisfaction with EOLC received, unmet need and unfulfilled care preferences (wishes). We believe this will be the first population based study of key informant's views of the dying experience in Canada. The results will provide vital new information to guide policy and program development based on informant estimates of needs and wishes of patients as they approach death.