Web-Based Toolkit Features Family Surveys and Resource Guides to Help Health Care Facilities Improve End-of-Life Care

From 1997 to 2004, Joan M. Teno, MD, MS, led a team of researchers from Brown University and other institutions in creating a toolkit of instruments to measure the quality of care for dying patients and their families.

Two working conferences in 1997 and 2000 attended by experts in end-of-life care helped the researchers identify the essential areas for quality end-of-life care and map out a research agenda. Project staff developed two new instruments—a patient interview and a bereaved family member interview—designed to measure the care institutions give at the end of life.

Project staff tested and validated the family member interview instrument (but discontinued work on the patient interview) and created a web interface where institutions can download this instrument, collect and submit data and receive reports for use in efforts to improve the quality of their end-of-life care.

The project was part of the Robert Wood Johnson Foundation's (RWJF) national program Targeted End-of-Life Projects Initiative.

Key Results

  • The National Hospice and Palliative Care Organization, which represents 80 percent of hospices nationwide, adopted a shortened version of the family interview for use by its members. By the end of 2005, 891 hospices were using the instrument and had submitted 121,817 surveys for analysis and reports.

  • Project staff created a resource guide that leads institutions through a model process to improve the quality of their end-of-life care.