Approximately 2.5 million Americans die each year with nearly 1 million receiving end of life care from hospice. Recent concerns with hospice quality have resulted in MedPAC's call for the public reporting of hospice quality. Furthermore, MedPAC noted the collaboration between Brown University and National Hospice and Palliative Care Organization (NHPCO) to create the Family Evaluation of Hospice Care survey (FEHC) as a potential candidate measure for public reporting. The FEHC was created in 1999 with the widespread adoption by NHPCO in 2004. One-third of the hospice programs in the US uses the survey and contributes approximately 200,000 surveys annually to a voluntary repository maintained by the NHPCO. Since the creation of the survey, important changes have occurred in the hospice industry. First, the emerging sites of death for hospice patients are nursing homes (22%) and hospice inpatient units (IPU) (21%). Second, the FEHC was developed prior to the National Consensus Project and the National Quality Forum endorsed National Framework and Preferred Practices in Palliative Care. Third, the core FEHC items need to be updated from a patient safety perspective. With the emergence of the hospice IPU as a site of death, new questions that focus on patient safety with health care transitions are needed. While the nursing home and hospice IPU are emerging sites of care, 57% of hospice patients still die at home. Patient safety and the concern that the hospice patient receives the "right care at the right time" is largely based on how well hospice staff educates and prepares the family caregiver in providing care as well as knowing when to call the hospice for help. New survey items will address these patient safety concerns. We propose through an expert panel, updated structured literature review, focus groups, cognitive testing, and a validation study to update the core content of the FEHC and create two instruments to address the emerging sites of hospice care, including addressing health care transitions to those sites. We will recruit 390 bereaved family members from five hospice programs with ethnically diverse patient populations to participate in a validation study that examines internal consistency, short term reliability, factorial validity, and construct validity of the new surveys and core items. Additionally, we propose two specific aims to focus on the stability of bereaved family members perceptions of the quality of care during bereavement and test whether the survey can be self-administered through the web with a mode test. At the end of this research, the validated surveys and a resource guide will be posted on a Brown University web site and on the NHPCO FEHC website to allow all hospice programs to utilize the revised instruments. Our proposed research aims to ensure that hospice care in the U.S. is patient centered and safe through providing tools to monitor hospice quality.
Hospice now provides end of life care for almost one half of the persons who die in the U.S. The Family Evaluation of Hospice Care survey is available for free and widely used by hospices. Nearly a decade since its creation, we propose to update the survey to cover two emerging sites of care (nursing homes and free standing hospice units) and modify the core items of the survey to address patient safety concerns and incorporate new practice guidelines from the National Consensus Project and NQF endorsed Preferred Practices in Palliative Care. This grant will create 2 surveys and modify the core surveys that will help hospices in monitoring and improving their quality of care.