Men as caregivers at the end of life

Background: Few studies have focused on men as caregivers at the end-of-life. The objective of this secondary data analysis was to examine the experiences of men involved in end-of-life caregiving, focusing on caregiver strain. Methods: We used a random sample of Oregon death certificates to telephone survey family caregivers of Oregonians who had died 2 to 5 months earlier in private homes, nursing homes, and other community-based settings. Measurements included single-item indicators and embedded scales to measure caregiver strain and perceived decedent symptom distress. For the 25 husbands, sons, wives, and daughters who reported the highest levels of strain, we also analyzed caregivers' description of the decedent's last few days of life. Results: The sample included 1384 caregiver interviews from a pool of 3048 death certificates. Men constituted 29% of the caregivers, including 15% sons, 9% husbands, and 5% others. In a linear regression model, male gender was a significant predictor of lower caregiver strain (p < 0.001). The strongest predictor of high end-of-life caregiver strain was the severity of the decedents' symptom distress. The qualitative analysis revealed that men used fewer words than women did to describe their experiences, and, despite subsequently reporting the highest levels of caregiving strain, only 15% of men spontaneously mentioned their own struggles. Conclusions: As caregivers at the end of life, men are less common and less likely to report caregiver strain and decedent symptom distress. Health care professionals should actively ask men about these issues and listen carefully, as their responses may be brief and understated.