Addressing the need for public reporting of comparative hospice quality: a focus group study

Standardized measures are available to assess hospice quality across multiple domains, but no information on hospice quality is available to the public. A study was conducted in 2006 to explore the public's knowledge, beliefs, and attitudes about hospice care and their responses to the idea of a public report on comparative hospice quality.

Six focus groups were conducted, two with individuals with direct hospice care experience and four with people without experience. Focus groups were videotaped, transcribed, and analyzed for themes and patterns of convergence and divergence.

Focus group participants without hospice experience knew of hospice but had little accurate information about hospices services, who could benefit, or how it is financed. Even some with hospice experience were unaware of services such as bereavement support. Participants saw hospice as appropriate only when the family could no longer provide care. They wanted a public report to include information about hospice, help in comparing hospice to other kinds of end-of-life care, details on accreditation, staff and services of individual hospices, quality comparisons, and decision support. Hospice was viewed as providing a broad range of services to the family as well as the patient.

This research will provide guidance for the development of an evidence-based model report on hospice quality that includes substantial educational material. It also supports the selection of measures for such a report that would resonate with the public, which makes the use of a comparative quality report more likely. The next step in this research is to develop and formatively test such a report, so that it can be pilot tested with willing hospices in a community offering a choice of providers. Considerable additional work is needed to ensure that hospice becomes more understandable and transparent to the public.