End of life and women aging with a disability.

Abstract

Approximately 21 million noninstitutionalized Americans with physical disabilities will ultimately face end-of-life [EOL] issues. Studies have documented disparate care and poorer outcomes for persons with preexisting disabilities who have life-limiting illnesses, which raises the question of how EOL experiences may differ for these individuals. The aim of this qualitative, descriptive study was to explore how EOL issues might emerge within the life stories of women aging with functional disabilities. Interview data were obtained from a larger, ongoing ethnographic study focused on the creation of an explanatory model of health disparities of disablement in women with mobility impairment. Each participant was interviewed three to four times using a life-course perspective that captures life trajectories and transitions experienced over time. For this analysis, 41 interviews were selected from 20 participants who discussed issues related to death and dying. Content analysis of the data revealed five analytic categories: death as a signpost, impact of others' deaths, deaths that affected personal insights and choice, EOL possibilities, and a personal brush with death. EOL issues were manifested in a variety of ways that revealed both determination to remain as independent as possible within the context of declining functional ability and uncertainty regarding the future.