Care at the End of Life Still Not What It Could Be

Monitoring national, state, and local indicators of end-of-life care

From 1999 to 2006, Joan Teno, MD, MS, and her colleagues at the Brown University School of Medicine, Providence, R.I., analyzed existing data, interviewed bereaved family members and conducted other surveys to assess the end-of-life care provided in private homes, in nursing homes and in hospitals.

Key Results:

  • Project staff provided authoritative national and state data for researchers, policy-makers and consumers about the quality of end-of-life care, according to the project director.
  • Teno and her colleagues disseminated their findings widely, publishing 25 journal articles and creating a web site with state-by-state data on the quality of end-of-life care in nursing homes.
  • Last Acts: A Vision for Better Care at the End of Life, a Robert Wood Johnson Foundation (RWJF) national program, used project data in Means to a Better End, its 2002 report documenting the status of end-of-life care in all 50 states.

Key Findings: Researchers reported the following findings in selected peer-reviewed journals:

  • Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support and respectful treatment.
  • More than one-third of U.S. nursing homes' residents with severe cognitive impairments have feeding tubes.
  • Family members of African-American decedents were less likely than those of white decedents to rate the care they received as excellent or very good.
  • Students and residents in the United States generally feel unprepared to provide many key components of good care for the dying, and both faculty and residents feel unprepared to teach them.