Qualitative Study of Patients' and Caregivers' Perceptions and Information Preferences About Hospice

Objective: The goal of this study is to assess perceptions about hospice among patients with metastatic cancer and their caregivers (i.e., family and/or friends). Design and Setting: We conducted semi-structured interviews with 16 adult patients with a prognosis <= 12 months and 7 of their caregivers. The interviews focused on perceptions, knowledge, and information preferences about hospice. Two raters coded interviews independently (kappa > 0.85). We used a framework approach for data analysis. Results: Participants showed variable gaps in understanding about hospice, including who would benefit from hospice care and the extent of services provided. They all perceived that hospice involves a psychological transition to accepting imminent death and often referred to hospice from a relatively cognitive distance, using hypothetical scenarios of others for whom hospice would be more relevant. Participants' attitudes about hospice reflected their concerns about suffering, loss of dignity, and death, as well as their perceived understanding of hospice services. These attitudes along with the psychological barriers to projecting a need for hospice and lack of knowledge were all perceived as important barriers to hospice utilization. All participants felt they needed more information about hospice, yet they were mixed regarding the optimal timing of this information. Conclusions: Study participants had misunderstandings about hospice and perceived end-of-life (EOL) concerns such as fear of suffering, loss of dignity, and death, as well as lack of knowledge as the main barriers to hospice utilization. Interventions are needed to educate patients and their families about hospice and to address their EOL concerns.