Grant: Operating Grant

In Canada, the leading causes of death include fatal chronic conditions such as chronic kidney disease, heart failure, chronic obstructive lung disease, and advanced cancer. Improved symptom management has created a new phase where people with these fatal chronic conditions are living longer in between relative health (with complex symptom management) and impending death. Although knowledge and understanding of chronic illness and palliative care are increasing, there is little known about peoples' experiences of living with the uncertainties of fatal chronic conditions where life may continue with surprisingly good quality of life or end suddenly with an illness event. While research has provided knowledge about the needs of informal or family caregivers during the palliative phase, it is also important to understand the perspectives of family members of those with fatal chronic conditions. Families are often critical in providing the necessary support for patients to remain independent while at the same time facing death. It is vital to understand how patients and their families want to be engaged in facing uncertainty and impending death. Through listening to the stories of people living with fatal chronic conditions and their families, this narrative study will further clarify how the disruptions, contradictions and uncertainties of living with these conditions change over time. Knowledge of peoples' needs during this liminal or in-between time can assist in avoiding over treatment, address issues in the coordination of care, and promote effective use of limited health care resources. Most importantly, a better understanding of patient and family experiences will assist in developing meaningful supports and resources to foster patient-centered care and improve quality of life for people living-and-dying with fatal chronic disease.