The chronically critically ill (CCI) are a recently recognized and growing population of patients who have endured prolonged periods of mechanical ventilation and have a one year mortality rate of 60%. Family caregivers play a significant role in decision making for CCI individuals and are intimately involved at life’s end. The purpose of this study was to describe and examine relationships between Caucasian and African American (AA) family caregivers’ perceptions of satisfaction with and preparation for end of life care. This study was part of a large randomized post-discharge disease management project. Interviews were conducted with 37 caregivers of CCI patients 3-4 months after death. Sixty-two percent of the patients and caregivers were Caucasian. The majority of Caucasian caregivers were spouses and children while the majority of AA caregivers were children and parents to those who died. Both AA caregivers (mean age 50) and the patients (mean age 62) who died were younger than Caucasian caregivers (mean age 56) and patients (mean age 69). Approximately half of the patients were on mechanical ventilation at the time of death, and 57% of AA patients had CPR compared to 17% of Caucasian patients which was statistically significant. Satisfaction and preparation were pilot tested with questions from Teno’s After-Death Bereaved Family Member Interview. Chi square and t-tests were used to compare the experiences of AA and Caucasian caregivers. There were statistically significant differences between AA and Caucasian family caregivers in the area of being informed of the patient’s condition and feeling confident about what to do at the time of death. There was a statistically significant positive relationship between satisfaction and preparation for AA caregivers but not for Caucasian caregivers. Health care providers should be sensitive to potential differences between Caucasian and AA family caregivers in providing end of life care.
Session #1201 - End of Life
The 29th Annual MNRS Research Conference (April 1-4, 2005)