Objective: The purpose was to compare perceptions of end of life care as experienced by bereaved families to the end of life care that professional staff perceived they provided. Design: The design was a descriptive survey. Population, Sample, Setting, Years: The study was conducted in a 606-bed tertiary care facility. Of the 490 patients who died in our facility between 9/1/00 and 4/04/01, 308 were adults with stays of greater than 48 hours. Of these, 177 families/close friends were reachable by telephone and 165 verbally agreed to complete a mailed survey. Sixty-two percent returned the survey (n=102). 800 health care staff who practiced in areas where the greater number of deaths occurred were randomly selected to complete a corollary survey; 22% responded (n=175). Concept or Variables Studied Together: The conceptual framework included physical and emotional management, spiritual and relationship needs, the health care environment, and communication regarding approaching death. The framework is based on previous work by the City of Hope Medical Center. The End of Life surveys were developed and evaluated by the Coalition for Palliative Care, Portland, Oregon. Permission for use was granted. The survey items, with sub-scales based on the conceptual framework, were derived from focus group analysis and validated by experts. Responses to the questions ranged from zero to 10, with 10 indicating a severe problem or no problem, depending on the item stem. Items were re-coded for comparisons. Each item provided space for narrative comments. Stability for the Bereaved Family version, measured by test/re-test, indicated a correlation of .86; internal consistency as measured by Cronbach’s alpha correlation coefficient was 0.92 for the total survey. Internal consistency coefficients ranged from 0.56 for the Emotional sub-scale to above 0.70 for the other sub-scales. In this study, Cronbach’s alpha for the total Bereaved Family survey was 0.83, with sub-scales ranging from 0.62 to 0.90. Cronbach’s alpha for the Professional survey was .91, with subscales ranging from 0.70 to 0.92. Methods: Approval of the study was obtained from the Institutional Review Board. The names of patients who had died during hospital stays of greater than 48 hours were obtained from the medical records department. Family members or close friends who were indicated as the contact person were called approximately six weeks after the death. Potential respondents must have visited the patient at least three times during the hospital stay and at least once during the last 24 hours before death. They verbally agreed to complete the survey by mail or by telephone. Only three selected the telephone completion option. Professional staff on units where the majority of the deaths occurred was randomly selected to complete the survey. Surveys were placed in hospital mailboxes. All data were entered into SPSS. Findings: There were no statistically significant differences in age, length of stay, or gender among the 143 patients whose families we could not reach, the 63 patients whose families did not complete the mailed survey, and the 102 patients with family responses. Fifty-three physicians, 91 nurses, seven social workers, and four clergy completed the Professional surveys. Twenty respondents did not indicate professional specialty. Fatigue, shortness of breath, and pain were identified by families as poorly managed for their dying members. Professional staff perceived that they provided effective care for pain, shortness of breath, and fatigue. Lower scores were reported by families for opportunities to talk with dying members about approaching death. Families also reported that they received very little information about support groups and that professional staff did not communicate about signs and symptoms of approaching death or provide any follow-up contact after death. Professionals scored themselves as fairly effective about most communication issues identified by family members although they did identify follow-up communication with families as lacking. Descriptions of singular negative experiences that affected family memories will be provided along with additional similar and different perceptions of care. Conclusions: The results suggest that while professional perceptions are similar to family perceptions for much of end of life care, there are several major management and communication issues where there is discrepancy. The narrative comments also suggested that while the overall end of life care experience might be positive, one or more negative events are remembered long after the experience. Implications: Our findings support the need for improved education for all health care providers on provision of end of life care and communication with patients and families on end of life issues. The presentation will include strategies for “valuing” the perceptions and issues identified by family members.
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