How We Die: 1996 Conference Develops Toolkit to Measure Quality of Care at the End of Life

There is growing concern in the United States that the way Americans die in hospitals is over-medicalized and contrary to patient preferences. Health care providers want to respond to these concerns, but lack the methodology to measure how well they are taking care of dying people.

George Washington University's Center to Improve Care of the Dying convened a panel of 31 experts to review current knowledge about measuring quality of care at the end of life and develop a consensus on a draft toolkit of measurement. The two-day "Conference on Measuring Care at the End of Life" was held in August 1996 in Woods Hole, Mass.

Key Results

  • The draft toolkit, based on the perspectives of dying patients and their families, contained an executive summary, annotated bibliographies of existing measurement instruments, recommendations of measurement instruments to be considered for use, and several new measurement tools.
  • The experts outlined an agenda for further research on patient and family perspectives, health care institution accountability, and cost-effectiveness of obtaining information on quality of care at the end of life.
  • The draft toolkit was made available to health care institutions and researchers through a Brown University website.
  • The principals published articles in the Journal of the American Geriatrics Society and Alzheimer Disease and Associated Disorders and in the Journal of Pain and Symptom Management and Hospice Journal.
  • IOM, used the draft toolkit's executive summary and new measures in its report Approaching Death: Improving Care at the End of Life.
  • The draft toolkit was used in RWJF national program Promoting Excellence in End-of-Life Care.
  • At the close of this project, RWJF-funded follow-up grants (see Program Results Report on ID#s 032208 and 033491, 038149 and 041478) developed a validated version of the toolkit, an accompanying resource guide, and software for analysis and reporting data.