Family Perceptions Show Pain of Dying Remains High in Oregon, Regardless of Ethnicity

Family perceptions of pain at the end of life: Trends over time

In 2002, researchers at the Oregon Health & Science University Center for Ethics in Health Care, Portland, Ore., conducted interviews with 384 family members of people who had recently died in Oregon.

The surveys were intended to expand the database of the researchers' previous study, conducted in 2000 and 2001, to include more minority participants. The purpose of the full research project was to learn about family perceptions of community-based dying.

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

Key Findings

  • The researchers reported the following findings:

    Racial, Ethnic Differences

    • Hospice enrollment was high for both white decedents (62.1%) and minorities (64%).
    • White decedents were more likely to have a written advance directive than minority decedents (81.5% vs. 62.4%).

    Differences in Pain Reporting Between Time Periods

    • There was no quantitative difference between the responses from the first 17 months and the additional five months of data collection.
    • Throughout the 22 months of the study, reported rates of pain and distress remained at high levels.