Advance Directives And Nursing Home Stays Associated With Less Aggressive End-Of-Life Care For Patients With Severe Dementia

This article describes the challenges of end-of-life care encountered in a specialized long-term care program for people with Huntington’s disease (HD). The Promoting Excellence in End-of-Life Care Huntington’s Disease Workgroup defines the initiation of palliative care as the point at which independent living is no longer possible. Mobility and lifestyle accommodations for people in the nursing home setting with an early-onset disease are a major feature of this program. The primary end-of-life considerations are advance directives decision-making and anticipating end-stage care needs. Disease progression, denial, family conflict, and clinician blind-spots may impede the development of timely advance directives. The unpredictable and idiosyncratic nature of disease progression impacts decision making for end-of-life care settings and approaches: hospitalization, nursing home stay, and in-house hospice care are the available options. The Workgroup has delineated several priority areas for patient care in HD: autonomy; dignity; meaningful social interaction; communication; comfort; safety and order; spirituality; enjoyment, entertainment, and well-being nutrition; and functional competence. This review also includes a description of the program features in each of these areas.

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

Yearbook of Neurology and Neurosurgery ◽

10.1016/s0513-5117(08)79065-3 ◽

2008 ◽

Vol 2008 ◽

pp. 118-119

Author(s):

J.P. Blass

Keyword(s):

Nursing Home ◽

End Of Life ◽

End Of Life Care ◽

Nursing Home Residents ◽

Life Care ◽

Advanced Dementia

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Nursing Home Resident, Family, and Staff Perspectives on Hospital Transfers for End-of-Life Care

OMEGA - Journal of Death and Dying ◽

10.1177/0030222821997708 ◽

2021 ◽

pp. 003022282199770

Author(s):

Janet Sopcheck ◽

Ruth M. Tappen

Keyword(s):

Emergency Department ◽

Nursing Home ◽

End Of Life ◽

End Of Life Care ◽

Family Members ◽

Terminally Ill ◽

South Florida ◽

Care Planning ◽

Life Care ◽

Advance Care

Residents who are terminally ill often experience transfers to the emergency department resulting in hospitalizations, which may be potentially avoidable with treatment in the nursing home. This qualitative study explored the perspectives of 15 residents, 10 family members, and 20 nursing home staff regarding end-of-life care and the circumstances prompting resident transfers. Data analysis of participant interviews conducted January to May 2019 in a South Florida nursing home identified four themes related to transfer to the hospital: time left to live, when aggressive treatments would be unavailing, not knowing what the nursing home can do, and transfer decisions are situation-dependent. Study findings underscore the importance of increasing resident and family awareness of treatments available in the nursing home and person-centered advance care planning discussions. Further research should explore the reasons for residents’ and family members’ choice of aggressive therapies and their goals for care at the end of life.

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Aging and Advanced Dementia Matters: End-of-Life Care in Nursing Homes

Innovation in Aging ◽

10.1093/geroni/igaa057.1679 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 520-521

Author(s):

Ruth Lopez ◽

Ellen McCarthy ◽

Meghan Hendricksen ◽

Susan McLennon ◽

Anita Rogers ◽

...

Keyword(s):

Nursing Home ◽

End Of Life ◽

Racial Differences ◽

End Of Life Care ◽

Feeding Tube ◽

Nursing Home Care ◽

Life Care ◽

Advanced Dementia ◽

Southeastern Us ◽

Intensity Of Care

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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An Individual Housing-Based Socioeconomic Status Measure Predicts Advance Care Planning and Nursing Home Utilization

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909118812431 ◽

2018 ◽

Vol 36 (5) ◽

pp. 362-369 ◽

Cited By ~ 7

Author(s):

Amelia Barwise ◽

Young J. Juhn ◽

Chung-Il Wi ◽

Paul Novotny ◽

Carolina Jaramillo ◽

...

Keyword(s):

Decision Making ◽

Socioeconomic Status ◽

End Of Life ◽

Advance Directives ◽

End Of Life Care ◽

Composite Index ◽

Life Care ◽

Individual Housing ◽

Lower Likelihood ◽

Multiple Variables

Background: Socioeconomic status (SES) is an important determinant of disparities in health care and may play a role in end-of-life care and decision-making. The SES is difficult to retrospectively abstract from current electronic medical records and data sets. Objective: Using a validated SES measuring tool derived from home address, the HOUsing-based SocioEconomic Status index, termed HOUSES we wanted to determine whether SES is associated with differences in end-of-life care and decision-making. Design/Setting/Participants: This cross-sectional study utilized a cohort of Olmsted County adult residents admitted to 7 intensive care units (ICUs) at Mayo Rochester between June 1, 2011, and May 31, 2014. Measurements: Multiple variables that reflect decision-making and care at end of life and during critical illness were evaluated, including presence of advance directives and discharge disposition. The SES was measured by individual housing-based SES index (HOUSES index; a composite index derived from real property as a standardized z-score) at the date of admission to the ICU which was then divided into 4 quartiles. The greater HOUSES, the higher SES, outcomes were adjusted for age, 24-hour Acute Physiology and Chronic Health Evaluation III score, sex, race/ethnicity, and insurance. Results: Among the eligible 4134 participants, the addresses of 3393 (82%) were successfully geocoded and formulated into HOUSES. The adjusted odds ratios comparing HOUSES 1 versus 2, 3, and 4 demonstrated lower likelihood of advance directives −0.77(95% CI: 0.63-0.93) and lower likelihood of discharge to home −0.60(95% CI: 1.0.5-0.72). Conclusion: Lower SES, derived from a composite index of housing attributes, was associated with lower rates of advance directives and lower likelihood of discharge to home.

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