Suffering and decision making among seriously ill elderly women

This phenomenological study explored the lived experiences of suffering and decision making among seriously ill elderly women in a nursing home setting. Previous studies have examined aspects of the suffering burden problem faced by elderly women with chronic, life-limiting, and life-threatening illness. The investigation of suffering and decision making in this study drew upon the analytic power of phenomenological methods to discern essential meanings and structures common to the narratives of elderly women participants. The study methods permitted in-depth descriptions of the life-worlds of elderly women that revealed the unexamined complex social structure of suffering and decision making and its temporal and developmental moments, heretofore not adequately explored in the literature. The study findings identified the maternal in a first temporal moment prior to suffering experiences as an issue of significance and importance for very sick and frail elderly women in the nursing home. The study revealed the loss of maternal foundations and loss of agency in a central temporal moment of care transitions to the nursing home as invariant in the structure of suffering and decision making. In a third temporal moment, an agentic, life-affirming and empathic care-seeking struggle toward well-being was revealed as a type of suffering and decision making that had eidetic meanings of maternal care, nurturance, comfort, and security. These study findings have implications for palliative social work practice, policy, and research, and the growing impetus for a paradigm shift in nursing homes away from the dominant medical model of disease diagnosis and symptom management to a more relational ethic of care among professional caregivers, especially hands-on staff, that provides seriously ill elderly women with opportunities for development and growth even at the end of their lives. Social workers are called upon to advocate for more resident-centered and humanistic practice interventions with vulnerable elderly persons at the end of life that are critical to a culture change movement for maternal nursing homes and palliative responses to suffering