How is end-of-life care provided for older people who have developmental disabilities and live in a community residence?
Kirkendall, Abbie Michelle
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Increasing numbers of older individuals with developmental disabilities will die from a progressive illness such as Alzheimer's, cardiovascular disease or cancer causing a growing need for end-of-life care. Mainstream aging services cannot be simply duplicated for older individuals with developmental disabilities who may have different needs from the non disabled population. Similarly, the end-of-life trajectory for older individuals with developmental disabilities creates unique needs indicating a need for a specialized model of end-of-life care. An additional influence on the provision of end-of-life care is the context of the environment. Until recently, community residences (CR) for individuals with developmental disabilities have been viewed primarily as a residential alternative not healthcare setting in which to provide end-of-life care. Community residences now provide a unique alternative for the provision of end-of-life care for older individuals who have advanced illnesses but the nature of community residences and the experiences of older individuals with developmental disabilities who are terminally ill and their families are largely unexplored. Therefore this study is the first step in examining the challenges and barriers that accompany collaboration between community residence staff and hospice staff. This exploratory descriptive study investigated (1) how end-of-life care is provided in community residences, (2) how formal (e.g. staff) caregiving systems influence the provision of end-of-life care and, (3) service barriers affect the provision of end-of-life care to older adults with developmental disabilities. The sequential use of qualitative methods included two phases. Phase I consisted of participant observation while Phase II consisted of in-depth face to face interviews. In Phase I systematic observations occurred in five community residences that have at least one resident who is over the age of 40 and is receiving care for an advancing and life-limiting condition. In Phase II the researcher conducted in-depth interviews with front-line staff, registered nurses and residence managers of five community residences with a total of 30 participants. Interviews were conducted face to face and included open and close ended questions. Findings indicate the timing of the transition to end-of-life care is critical with early intervention presenting as most effective in addressing residents' needs in end-of-life. Collaboration between service providers for individuals with developmental disabilities and hospice requires emphasis on the education of each others roles, organizational systems, regulations, and financing. Consistent communication between all levels of organization is required to create an effective partnership.