In Hospitals or Hospices, Pain is the Dying Patient's Frequent Companion

Survey of recent participants in end-of-life decision-making

Starting in 1995, researchers at Harvard University School of Public Health, Boston, conducted a survey to explore to what extent the results of the SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) project could be generalized.

SUPPORT, the first prospective study of dying patients, funded by Robert Wood Johnson Foundation (RWJF), was conducted in five major medical centers and focused on specific diagnosis categories.

For more information on SUPPORT, see the Anthology Chapter.

Key Findings

  • This survey, of 502 individuals who participated in loved ones' End-of-Life decisions and 504 others selected randomly, expanded on SUPPORT by exploring:

    • The nature and quality of care.
    • Degree of suffering.
    • The extent to which patient preferences were honored in a range of settings beyond the major medical center, including community hospitals, hospices, and home.

    Its major findings included:

    • As in the SUPPORT study, dying patients endured significant levels of pain and other negative outcomes.
    • Patients who died in major medical centers were more likely to prefer life extension over pain relief and to have been on mechanical life support, but they were not more likely to have reported being in severe pain than patients who died in other hospitals.
    • While place of death was not accounted for in the SUPPORT study, it played a role in the results of this project's survey. Those who died at home or in "other" (such as hospice) settings were more likely to have died of cancer and to have been expecting their deaths for a longer period.
    • Forty-three percent of respondents reported that their conscious loved ones were in severe pain most of the time near the end of life.
    • As in the SUPPORT study, there was little difference between the End-of-Life experiences of patients who did and did not have advance directives.