Project Collects and Assesses Data on What Works Best When Managing Hospice Patients' Pain, Shortness of Breath and Autonomy

From 1998 to 2003, staff at the National Hospice and Palliative Care Organization, Alexandria, Va., conducted a national hospice outcomes project to assess the impact of various treatment strategies on the quality of hospice care.

The nonprofit National Hospice and Palliative Care Organization represents U.S. hospice and palliative care programs and professionals.

Project staff conducted a study with 13 hospices to collect data on pain control, dyspnea and self-determined life closure for 1,306 hospice patients.

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

Key Findings

  • Project staff reported the following preliminary findings (as of April 2004):

    • On admission to the hospice, 91 percent of patients had scores of 50 percent or less on the Palliative Performance Scale, which measures progressive decline in palliative-care patients from fully ambulatory (100%) to death (0%).
    • Of 3,958 pairs of pain assessments, the outcome for pain was clearly bad in 721 episodes (18.2%) and had the best outcome in 1,236 episodes (31.2%). The remaining 2,001 pairs had varying levels of good outcomes.
    • Pain is best studied at the episode level, rather than at the patient level. The researchers noted that, in regular life, patients have good and bad spells, and it is necessary to study pain at the episode level to determine what works best.