A view from the family: years after a loved one has died of ovarian cancer.
OBJECTIVE: When cancer strikes a patient, it has a major impact on the family. Whereas many health care providers deal with the family while the patient is living, few have any long-term interactions after she has died. The purpose of this study is to interface with family members and reflect upon the impact ovarian cancer had on them. METHODS: A retrospective chart review was conducted of 222 patients who had been diagnosed and treated for ovarian carcinoma between the years 1990 and 1994 at Maine Medical Center, a tertiary care medical center. Of these, 34 patients who had been deceased for longer than 1 year were selected on the basis of specific criteria. The families of these individuals were each mailed a questionnaire comprising seven questions tailored to evaluate one family member's impressions and experiences of coping with a loved one who had died from ovarian cancer. Candid responses of any length were invited. RESULTS: Written responses were received from 32 of the 34 families that were mailed questionnaires. Of those responding, 65% were spouses, 22% were children, and 13% were siblings of the deceased. Each questionnaire was answered by only one relative, and the majority of questions posed received multiple detailed answers. According to the vast majority of respondents, the worst part of treatment was continuing chemotherapy. The most common emotion expressed by family members at the time of diagnosis was one of something having gone wrong. Both travel and living longer appeared to be the most treasured aspects of the patient's life once the diagnosis had been made. Watching their loved one suffer and the overwhelming sense of helplessness were the worst aspects of the disease process. The loved one was most often thought of on her birthday, and 90.6% of the respondents thought another female in their family was likely to get ovarian cancer. CONCLUSION: This study attempted to define those concerns and thoughts that remain important to family members whose loved ones had died from ovarian cancer. Common emotions expressed by family members years after the death of their loved one include their sense of surprise at the diagnosis, their sense of helplessness during the progression of the disease, and their pain in watching their loved one suffer. For them, the worst part of their loved one's treatment was continued chemotherapy, and a common unfounded fear was that another female family member would likely die from ovarian cancer. The responses encourage us as health care providers to remain in touch with these families even after the death of their loved one and to address the misconceptions, fears, and anxieties that our patients and their families may have.