How Is End-of-life Care Provided To Older Individuals With Developmental Disabilities Who Live In A Community Residence?

Increasing numbers of older individuals with developmental disabilities will die from a progressive illness such as Alzheimer's disease, cardiovascular conditions or cancer and this causes a growing need for end-of-life care that addresses the special needs of this population. Mainstream aging services cannot merely be duplicated for older individuals with developmental disabilities who may have needs that are distinctly different from the non disabled population. Similarly, the end-of-life trajectory for older individuals with developmental disabilities creates a need for a specialized model of end-of-life care. Until recently community residences (CR) for individuals with developmental disabilities have been viewed primarily as a residential alternative rather than a health care setting which provides end-of-life care. Presently, efforts between service providers of individuals with developmental disabilities and end-of-life care providers such as hospice are beginning to form partnerships. 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. The purpose of this study was to examine 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. community resident/ hospice staff) caregiving systems influence the provision of end-of-life care and, (3) the challenges and barriers that exist when hospice and service providers to individuals with developmental disabilities partner in the provision of end-of-life care. The sequential use of qualitative methods included two phases. 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 in person and included open and close ended questions. All audiotaped interviews were transcribed and entered into Atlas ti (Scientific Software, Berlin, Germany) for data management and coding. Findings indicate that 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 each organization is required to create an effective partnership. Results suggest that future research should involve interviewing hospice care staff to provide a comprehensive view of the needs of both organizations in providing end-of-life care. Consequently, obtaining the perspectives of hospice staff creates a foundation for the development of a specialized hospice care team for older individuals with developmental disabilities.