Earlier discussions about end-of-life planning before the diagnosis of a life-limiting illness would be beneficial. Lacking is a consistent approach to determining capacity for individuals with an intellectual disability. The findings from this review provide a foundation for a decision tree in end-of-life decision making for individuals with an intellectual disability.
Most older adults with advanced illnesses express the wish to die at home. Home-based care from home health and hospice agencies makes this possible, but there are great geographic variations in utilization. Interviews and focus groups with key constituents in home health and hospice agencies across the 8-county region of Western New York State were used to explore how rural-urban location and agency type (home health or hospice) influence variations in end-of-life care. Emergent themes were: Rural-Urban Differences (geographic challenges, market forces, and programming issues) and End-of-life Care Issues (macrosocial, mezzosocial, and microsocial factors). Implications for social work practice are discussed.
The number of older people with intellectual disabilities (IDs) is increasing in parallel to the lengthening life expectancy of the overall population. Little is known about the needs of older people with IDs who are at life's end. Service providers who offer direct care to people with IDs have begun to develop partnerships with hospice and palliative care specialists to provide focused care that is more specialized for their clients or residents who are approaching the end of life. However, community-based programs utilize different philosophies of care that focus on the daily management of people with IDs compared to programs that focus on care at the end of life. Merging these two approaches to care in community-based residences or community-based programs for people with IDs brings challenges for both types of programs. This article compares person-centered planning and patient-focused, family-centered care and proposes means for merging the two seemingly disparate approaches to care.
The terms comfort measures and comfort care are widely used in nursing homes but definitions and modes of delivery vary. In-depth exploration can be utilized to compare of current and existing practices and contribute knowledge about whether palliative care is provided in nursing homes and if so, how. Ultimately program comparisons can lead to improvements in nursing home-based end-of-life care and standards for the delivery of palliative care in this setting.
The Hispanic older adult population is increasing rapidly and past research suggests that this demographic group underutilizes hospice services, highlighting the need to improve our understanding of their needs in end of life. This study relied upon information from the family evaluation of hospice care survey provided by 2980 caregivers, 152 of whom cared for a Hispanic patient and 2828 who cared for a non-Hispanic patient. Caregivers of Hispanic patients were more likely to report that hospice was inconsistent with the patient's wishes, and that they received more attention than desired for emotional issues. Caregivers of Hispanic patients were also more likely to express that emotional/spiritual forms of support were insufficient. Similar levels of satisfaction were reported for caregivers of Hispanics and non-Hispanics regarding dignity/respect, information received, care coordination, and overall satisfaction.
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