“Looking beyond pain”: Potential quality measures for hospice and palliative care

Hospitals, home health agencies, and nursing homes are familiar with the use of quality measurement for continuous quality improvement. Recent regulations require hospice and palliative care organizations to implement quality improvement activities. Little is known about quality improvement practices and measures appropriate for these organizations. We explored perspectives of key informants concerning quality measures appropriate for internal quality improvement, public reporting, and pay for performance. Using semi-structured interviews conducted by phone with key informants (n=52), we asked participants to suggest measures for eight domains of care endorsed by the National Consensus Project: physical, psychological, social, cultural, spiritual, ethical and legal, care for the imminently dying, and structural. An ethnographic approach guided analysis. Measures for physical symptoms, particularly pain, were suggested and generally felt to have sufficient evidence base for use in internal quality improvement, pay for performance, and public reporting. Although participants recognized the importance of measuring quality in other domains, they described a lack of a research evidence base on quality measures and best practices in hospice and palliative care settings. Participants cited additional difficulties with quality measurement in this setting, namely the inability to accurately measure bereavement and spiritual aspects of care. Respondents were generally supportive of measures assessing: family and patient satisfaction, symptom control, and the establishment and use of services. Results suggest that structural and process measures may be most helpful to consider when developing quality measures in these settings. Implications for future research and quality measure development in these settings will be discussed.