Satisfaction with End-of-Life Care for Nursing Home Residents with Advanced Dementia

Abstract Over 5 million Americans have dementia, and the majority will die in nursing home (NHs). While comfort is the main goal of care for most NH residents with advanced dementia, they commonly receive burdensome and costly interventions such as hospital transfers and feeding tubes that are of little clinical benefit. Despite 20 years of research and numerous experts and associations advocating a palliative approach to care, quantitative studies continue to demonstrate striking and persistent regional, facility, and racial differences, including: greater intensity care among African American versus White residents; greater intensity of care in the Southeastern US; and wide variation in care among NHs in the same region of the country. The reasons for these differences are poorly understood. Assessment of Disparities and Variation for Alzheimer’s disease in Nursing home Care at End of life (ADVANCE) is a 3-year, NIA funded qualitative study of 16 NHs in 4 regions of the country which aims to explain regional and racial factors influencing feeding tube and hospital transfer rates. The purpose of this presentation is to present the methodology established in this study and to highlight factors challenging and enabling implementation of the study protocol. To date, data have been collected in 11 NHs, and include 135 staff interviews, 40 proxy interviews, and nearly 800 hours of observation. These findings demonstrate that although challenging, large qualitative research is possible and holds promise as an effective method to illuminate complex processes influencing end-of-life care for NH residents with advanced dementia.

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Advance care planning preferences in Chinese nursing home residents: results from two cross-sectional studies in Hong Kong and Taiwan

BMC Palliative Care ◽

10.1186/s12904-021-00820-4 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Xinyi Xu ◽

Shu-Wen Tu ◽

Chia-Chin Lin

Keyword(s):

Hong Kong ◽

Nursing Home ◽

End Of Life ◽

Advance Directive ◽

End Of Life Care ◽

Nursing Home Residents ◽

Completion Rate ◽

Life Care ◽

Term Care

Abstract Background The proportion of hospital deaths has declined in the past few decades, while the proportions of nursing home deaths have increased. This trend of increasing deaths in long-term care facilities underlines the importance of improving end-of-life care provisions in these settings to meet individual preferences and needs. Under these circumstances, a comprehensive understanding of end-of-life care preferences in local nursing home residents can help healthcare professionals and policymakers develop strategies to increase the advance directive completion rate and quality of care. This study aimed to explore and compare advance directive and end-of-life care preferences of nursing home residents in Hong Kong and Taiwan. Methods A structured questionnaire was developed by the research team to investigate advance directive and end-of-life care preferences in older Chinese nursing home residents. Nursing home residents with frail or pre-frail status and over the age of 64 were invited to participate in the study, and information on demographics, functional status, advance directive experiences, and end-of-life care expectations was collected through questionnaire interviews. Results A total of 325 eligible participants from 32 facilities completed the survey, including 238 older residents in Hong Kong and 87 in Taiwan. A significantly lower proportion of the Hong Kong residents had completed an advance directive compared with the Taiwanese (3 vs. 13%, p = 0.001). Among participants who did not have an advance directive, 46% of the Taiwanese participants said they would consider completing one in the future, compared with 20% of the Hong Kong participants (p < 0.001). A total of 79% of the Hong Kong participants and 80% of the Taiwanese participants responded that prolonging life in the given hypothetical dying scenario was “not important” (p = 0.76). Only 14% of participants in Hong Kong and 18% of participants in Taiwan reported prior occurrence of end-of-life care discussions with family members or health professionals (p = 0.37). Conclusions This paper adds evidence in support of improving end-of-life communication and the advance directive completion rate in nursing homes in Hong Kong and Taiwan. Further research is necessary to explore cross-cultural differences in end-of-life preferences and its applications in predicting decision-making and the quality of end-of-life care.

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Quality of dying and quality of end-of-life care of nursing home residents in six countries: An epidemiological study

Palliative Medicine ◽

10.1177/0269216318800610 ◽

2018 ◽

Vol 32 (10) ◽

pp. 1584-1595 ◽

Cited By ~ 27

Author(s):

Lara Pivodic ◽

Tinne Smets ◽

Nele Van den Noortgate ◽

Bregje D Onwuteaka-Philipsen ◽

Yvonne Engels ◽

...

Keyword(s):

Nursing Home ◽

End Of Life ◽

Epidemiological Study ◽

End Of Life Care ◽

Nursing Home Residents ◽

Life Care ◽

Quality Of Dying

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Nursing home staff’s perspective on end-of-life care of German nursing home residents: a cross-sectional survey

BMC Palliative Care ◽

10.1186/s12904-019-0512-8 ◽

2020 ◽

Vol 19 (1) ◽

Cited By ~ 4

Author(s):

Anke Strautmann ◽

Katharina Allers ◽

Alexander Maximilian Fassmer ◽

Falk Hoffmann

Keyword(s):

Palliative Care ◽

Nursing Home ◽

Nursing Homes ◽

End Of Life ◽

Nursing Staff ◽

End Of Life Care ◽

Nursing Home Residents ◽

Hospital Death ◽

Life Care ◽

Cross Sectional

Abstract Background Nursing homes are becoming more important for end-of-life care. Within the industrialised world, Germany is among the countries with the most end-of-life hospitalizations in nursing home residents. To improve end-of-life care, investigation in the status quo is required. The objective was to gain a better understanding of the perspectives of nursing home staff on the current situation of end-of-life care in Germany. Methods A cross-sectional study was conducted as a postal survey among a random sample of 1069 German nursing homes in 2019. The survey was primarily addressed to nursing staff management. Data was analyzed using descriptive statistics. Staff was asked to rate different items regarding common practices and potential deficits of end-of-life care on a 5-point-Likert-scale. Estimations of the proportions of in-hospital deaths, residents with advance directives (AD), cases in which documented ADs were ignored, and most important measures for improvement of end-of-life care were requested. Results 486 (45.5%) questionnaires were returned, mostly by nursing staff managers (64.7%) and nursing home directors (29.9%). 64.4% of the respondents rated end-of-life care rather good, the remainder rated it as rather bad. The prevalence of in-hospital death was estimated by the respondents at 31.5% (SD: 19.9). Approximately a third suggested that residents receive hospital treatments too frequently. Respondents estimated that 45.9% (SD: 21.6) of the residents held ADs and that 28.4% (SD: 26.8) of available ADs are not being considered. Increased staffing, better qualification, closer involvement of general practitioners and better availability of palliative care concepts were the most important measures for improvement. Conclusions Together with higher staffing, better availability and integration of palliative care concepts may well improve end-of-life care. Prerequisite for stronger ties between nursing home and palliative care is high-quality education of those involved in end-of-life care.

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