Live well, die well: experiences of the last phase of life

The demand for palliative care is rising due to prolonged illness and deterioration before death, with a focus on improving the quality of life for individuals and their relatives. As society ages and healthcare personnel shortages persist, it becomes increasingly important to explore how community involvement, such as volunteers, can support the care of individuals in their final stages of life.

The studies in this dissertation were aimed at increasing our understanding of experiences of the last phase of life. We examined preferences and concerns of patients in the last phase of life, as well as their confidence in their own ability (self-efficacy) to participate in decision-making processes. Additionally, we investigated the implementation of a volunteer service for individuals in the final days of their lives in hospitals across five European countries. Lastly, we explored how bereaved relatives evaluated end-of-life care during the COVID-19 pandemic and how they attributed meaning to the loss of a loved one during this period. We used data from two international research projects, including the iLIVE project and the ACTION javascript:void(0);study, as well as the Dutch CO-LIVE study.

The studies in this dissertation emphasize the importance of the non-medical dimensions of dying. The findings indicate that most people in the last phase of life and their relatives desire an open and supportive approach from healthcare providers and society. Over two-thirds of patients would appreciate more openness about death in society. Additionally, bereaved family members rated the place of death of their loved one as more appropriate when healthcare providers offered substantial emotional support. Volunteers can have a valuable contribution to hospital care for individuals in the final days or weeks, but they need support from professional healthcare providers.