Access to hospice: a perspective from the bereaved

Access to hospice care continues to be an enigma. Hospice has been available for nearly three decades in the United States, but the services continue to be underutilized. In an effort to better understand access barriers, a series of focus groups were held with recently bereaved caregivers (mean = 9.9 months since the death of the patient). During the process of the focus group discussions, participants relived their experience with hospice. Although the purpose of this research was to ascertain access recommendations, participants integrated their access comments into the overall richness of their hospice experience. The 12 participants were divided into two groups, and each group met twice with a 2-week interval between sessions. From the focus group discussions, six themes emerged. Two of the six themes related to access issues: (1) societal and health system issues related to delayed hospice access and (2) education and practice needs of health professionals that affect hospice access. Participants provided recommendations to address the concerns expressed through both of these access themes.