Low Hospice Utilization in New York State: Framework for Compiling and Ranking Barriers

The hospice benefit can improve end-of-life outcomes, but is underutilized, particularly in low enrollment states such as New York. Little is known about this underutilization. The first part of a mixed-methods study aimed to compile and rank barriers to hospice utilization and identify differences between New York and the rest of the United States. Clinicians, administrators, and hospice employees participated in six sessions (6-12 per session) across New York State, USA. During each session, a methodology known as nominal group technique was used to elicit barriers to hospice, identify those specific to New York, and suggest interventions to improve access. The analysis involved first categorizing and ranking barriers, and then conducting a thematic analysis of session transcripts to examine barriers specific to New York and proposed interventions to improve utilization. Fifty-seven participants ranked 54 barriers, which were grouped into nine categories. These reflected concerns about clinician knowledge and attitudes or beliefs; patient and family knowledge, attitudes or beliefs, and resources; and both structural elements and practices of hospices, nursing homes, palliative care services, and other entities in the health care system. Thirteen barriers from eight categories were ranked among the top five by ≥10% of participants; only 10 of the 54 were judged to be specific to New York. Thematic analysis highlighted 14 barriers important in New York and suggested 11 interventions to improve hospice access. A categorization and ranking of barriers may guide future interventions to improve low hospice utilization. Novel studies with heterogeneous stakeholders are needed.