Perspectives Regarding Hospice Services and Transfusion Access: Focus Groups With Blood Cancer Patients and Bereaved Caregivers

Abstract

ContextPatients with blood cancers have low rates of timely hospice use. Barriers to hospice use for this population are not well understood. Lack of transfusion access in most hospice settings is posited as a potential reason for low and late enrollment rates. ObjectivesWe explored the perspectives of patients with blood cancers and their bereaved caregivers regarding the value of hospice services and transfusions. MethodsBetween June 2018 and January 2019, we conducted three focus groups with blood cancer patients with an estimated life expectancy of six months or less and two focus groups with bereaved caregivers of patients with blood cancers. We asked participants their perspectives regarding quality of life (QOL) and about the potential association of traditional hospice services and transfusions with QOL. A hematologic oncologist, sociologist, and qualitatively trained research assistant conducted thematic analysis of the data. ResultsTwenty-seven individuals (18 patients and nine bereaved caregivers) participated in the five focus groups. Participants identified various QOL domains that were important to them but focused largely on a desire for energy to maintain physical/functional well-being. Participants considered transfusions a high-priority service for their QOL. They also felt that standard hospice services were important for QOL. Bereaved caregivers reported overall positive experiences with hospice. ConclusionOur analysis suggests that although patients with blood cancers value hospice services, they also consider transfusions vital to their QOL. Innovative care delivery models that combine the elements of standard hospice services with other patient-valued services like transfusions are most likely to optimize end-of-life care for patients with blood cancers.