The QOD-LTC and QOD-LTC-C are psychometrically acceptable measures of the quality of the dying experience, developed for and tested in LTC settings. Use of these measures can increase understanding of the dying experience in LTC.

Purpose This study was designed to examine the end-of-life (EOL) experience in long-term care (LTC) based on input from key stakeholders. Design and Methods The study consisted of ten homogeneous focus groups drawn from a purposive sample of LTC residents (2 groups; total n = 11); family caregivers (2 groups; total n = 19); paraprofessional staff (3 groups; total n = 20); and licensed/registered staff (3 groups; total n = 15) from five nursing homes (NHs) and eight residential care/assisted living (RC/AL) communities in North Carolina. Data were analyzed using grounded theory techniques to elicit manifest and latent themes. Results Five overarching themes emerged: (1) components of a good death in LTC; (2) normalcy of dying in LTC; (3) the role of relationships in the provision and receipt of care; (4) Hospice contributions to care at the EOL in LTC; and (5) stakeholder recommendations for enhancing EOL care in these settings. Underlying these themes is one central category, “closeness,” based on physical proximity and frequency of contact. Implications Findings suggest that promoting collaborative relationships among the four stakeholder groups, increasing social worker involvement, and removing barriers to Hospice may enhance the EOL experience in LTC.

There are an estimated 5–7 million long distance caregivers in the United States, but relatively little is known about this growing subpopulation of caregivers. This study systematically reviewed the existing empirical literature on long distance caregiving and critically examined 15 identified studies: 8 quantitative, 2 mixed-method, and 5 qualitative. Although studies defined long distance caregiving very differently, a composite description of who long distance caregivers are and what they do is presented. Long distance caregivers make substantial contributions to care in terms of physical, financial, and social support. Distance complicates the exchange of information about the care recipient’s health and care needs, as well as the types of care that can be provided. Related to this, geographic separation can exacerbate care-related stressors. Implications for future research are also identified.

Rates of hospice use observed in this study (22%) were considerably higher than previously reported, although persons with dementia may continue to be underreferred. Hospice use is targeted to dying residents with higher levels of reported pain and dyspnea. Because difference in care largely disappears in cases when death was expected, LTC staff seem to be well positioned to provide end-of-life care for their residents and are advised to remain sensitive to instances in which death may be expected.

Many characteristics related to end-of-life caregiving outcomes in long-term care are consistent with community-based studies, suggesting that end-of-life caregiving outcomes in long-term care are not markedly different than in other settings. However, the role of staff support may either facilitate or complicate emotional strain and merits additional study.

Little research has been done on the topic of end-of-life care in long-term care settings to identify important themes regarding end-of-life care structures, processes, and outcomes. This study utilized data gathered in a stratified, random sample of 437 family members of residents who died in 31 nursing homes (NHs) and 199 residential care/ assisted living facilities. Structural components of care including staffing adequacy, training, and consistency as well as facility environment and size were important factors for family members interviewed. "Being there" and manner of care delivery (e.g., staff attitudes/empathy) were major elements in the process of care. These factors were mentioned more than direct care, Hospice, or resident preferences. Family members identified themes of [dying at] home and being comfortable and clean as important outcomes of care. These identified structural components, processes, and outcomes have implications for the role of social workers in these settings despite that social work support is notably absent in these findings.

Instruments that assess quality when dying differ in several ways and most do not measure a single construct, which is relevant to guiding and evaluating care. Comparing psychometric properties and usefulness of instruments that measure similar constructs is the next step in determining which are best suited for use in LTC.

This article describes the characteristics associated with activity involvement in 400 residents with dementia in 45 assisted living facilities and nursing homes. Activity involvement was related to family involvement in care and staff encouragement, after adjusting for resident age, gender, race, cognitive and functional status, and comorbidity.