A growing body of literature suggests that diverse attitudes toward the end of life exist across and within ethnic minority groups. This focus-group pilot study examined social and cultural factors influencing views of Korean-American older adults and caregivers on advance care planning and hospice care. A total of 20 older adults and 16 caregivers in west central Florida participated in one of four focus groups. This study found diverse attitudes among Korean Americans toward end-of-life care and cultural and structural barriers to advance care planning and hospice use. Older adults and caregivers both expressed a lack of knowledge about advance care planning and hospice and agreed that the family would make the final decision about the end-of-life care, while acknowledging the challenge of initiating communications about treatment preferences. They interpreted the Korean value of filial piety to support both curative and palliative treatment. The traditional norm of home death and importance of physician communication influenced preferences for hospice and advance care planning, respectively. Future outreach and education efforts should include development of culturally sensitive educational and communication tools and collaboration with ethnic community organizations and healthcare providers in the dissemination and education of these instruments.

Although high need predicts care in NFs, some of the most impaired elders are also being cared for at home. Because Medicaid increases the likelihood of NF placement, public financing of LTC should reflect the capacity of the system to serve elders at home.

We do not know to what extent the needs of caregivers involved with patients at the end of life are being met by care providers and whether caregiving at life's end can be a positive experience. We used the Hospice Experience Model of Care as a framework for understanding the effect of transformative tasks on caregiving at life's end. We compared current and bereaved caregivers and then, holding background characteristics constant, tested the independent effects of three transformative mediators: self-acceptance, meaning, and closure, as well as comfort with caregiving on several stressors when explaining differences in caregiver burden and gain. Transformative aspects of caregiving do not mediate the stressors associated with burden but do mediate one stressor associated with caregiver gain. Two mediators reduce caregiver burden and all four of the mediators improve caregiver gain. Caregivers who are able to attend to these transformative aspects find more gain in the caregiving experience.

Caregiving at Life's End (CGLE) is a program for family caregivers caring for someone during the last years of life that focuses on the emotional, spiritual, and practical aspects of life and relationship completion and closure. This study evaluated the effectiveness of CGLE in improving three major outcomes: comfort with caregiving, closure, and caregiver gain. Family caregivers (n=2,025) participated in programs facilitated by health and human service professionals (n=142) who completed a CGLE train-the-trainer workshop conducted by The Hospice Institute of the Florida Suncoast. The caregivers completed training rosters and pre- and/or post-surveys. Group differences are reported in baseline characteristics and change in three outcomes for caregivers who completed 1) both pre- and post-survey, 2) pre-survey only, and 3) post-survey only. For those who completed both surveys (n=926), paired t-tests and multiple linear regression tested the impact of program length on caregiver outcomes. Caregivers participated in, on average, four sessions and 7.7 hours of training. The majority of caregivers were Caucasian (88%), female (81%), and on average, 60 years old. Significant improvement was found in all three outcomes (P<0.001). The program length made a difference for improvement in comfort with caregiving and closure but not in caregiver gain. Caregivers who are caring for someone during the last years of life benefit from a program that focuses on the life-changing or transformative aspects of caregiving in the last years of life, as well as practical aspects of caregiving. The ability to support caregivers in this relatively low impact intervention can be used in hospice and nonhospice settings.