End of Life and Women Aging with a Disability

Abstract

Approximately 21 million noninstitutionalized Americans with physical disabilities will ultimately face end-oflife [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.

Health and disability care providers’ experiences and perspectives on end-of-life care needs of individuals with long-standing physical disability: A qualitative interview study

“…10,11,18 Additional barriers to disability support workers provision of quality end-of-life care are fear of the unknown and not expecting to have to do this as part of their job. 8,15,19 This supports our study findings which identified similar challenges faced by disability support workers when their clients with long-standing physical disability transitioned to requiring end-of-life care.…”

“…Discrimination within the healthcare system has led to unequal health outcomes for people with disability, including at end of life, with far reaching consequences. 15,24,25 Importantly, this study recognises that family, whether in a caring role or not, have been witness to and may have experienced this discrimination as a result of their support of the person with disability. 26 The complexity of the role of family was raised by participants in this study.…”

“…Palliative care is optimised when services, delivered across a range of health, disability, ageing and community sectors, are responsive to the needs and preferences of patients/residents and their families. 15 Participants in this study described a range of experiences and skills when providing end-of-life care. The setting(s) in which the individual with long-standing disability experiences end-of-life care was crucial.…”

“…2 Facilitation of collaborative service provision equates with timely and appropriate communication and coordination of care across health, disability and community settings. 15…”

“…6 However, there are significant barriers to accessing end-of-life care including workforce lack of knowledge and skills relating to providing end-of-life care for those with disability, and informal carers knowing who to contact and when. 15 The current study therefore aimed to explore experiences and perceptions of health and disability care providers towards end-of-life care needs of adults with long-standing physical disability.…”