Making decisions about care: what it means for hospice inpatients with terminal progressive disease

There is very little research into patients who suffer from a terminal and progressive illness making decisions about health care in a hospice setting. What decision-making means to the inpatients in a hospice could be better understood by staff caring for this patient group. The aim of this small qualitative study was to explore the nature of decisions and the process of decision-making with patients who had been admitted to a hospice with a progressive terminal illness. A phenomenological approach was taken using a theoretical framework to explore the patients' life world and its existential meaning, and interviews were conducted with six inpatients. The decisions that came to the fore for the participants were around the driving force behind admission, which was often pain. Beyond this often traumatic event they were able to be robust in decision-making about day-to-day issues. Other decisions related to the purpose of the admission such as symptom control, achieving independence, whether to have further treatment, communication with their families and returning to the community. Patients had an increased awareness of the fragility of their existence, which was brought into focus by the decision to be admitted to the hospice. The findings give an insight into the driving forces behind decision-making and the kind of decisions that are important to the patients in this sample, which staff caring for this patient group may find valuable.