Increased family reports of pain or distress in dying Oregonians: 1996 to 2002

The aim of this study was to compare the prevalence of family-reported pain or distress during the last week of decedents' lives during two times: November 1996 to December 1997 and June 2000 to March 2002. We telephone-surveyed family caregivers of Oregonians who had died 2 to 5 months previously in private homes, nursing homes, and other community-based settings. Caregivers were asked to rate the level of pain or distress during the decedent's final week of life on a four-point scale. Data were collected from 340 respondents from 1996-1997 and 1384 respondents from 2000-2002. We found that the prevalence of family-reported moderate or severe pain or distress (compared to comfortable or mild pain or distress) in Oregon decedents increased from 30.8% in 1996-1997 to 48% in 2000-2002. Using a logistic regression model to control for differences between the two sampling times and other predictors of increased pain or distress, decedents in 2000-2002 remained approximately twice as likely to be reported to be in moderate or severe pain or distress during the last week of their lives (Time 2 vs. Time 1, odds ratio [OR] 2.09, 95% confidence interval [CI] 1.59-2.74). We discuss possible explanations for this finding, including media effect created by the publicity surrounding the second ballot measure and subsequent availability of physician-assisted suicide in November 1997. Alternatively, trends in underfunding and understaffing of hospice and community nursing resources may have disproportionately affected care in the final week of life, which depends heavily on skilled nursing care for effective symptom control and psychosocial support of the patient and family.