Dying in Long-Term Care: Perspectives from Sexual and Gender Minority Older Adults about Their Fears and Hopes for End of Life

Abstract BackgroundRapidly ageing populations means that many people now die in advanced age. This paper investigated public hospital and long-term care home costs in the 12 months before death in Māori and non-Māori of advanced age in New Zealand.MethodsData from an existing longitudinal study (LiLACS NZ) was used, in which 937 older New Zealanders were enrolled in 2010. At the time of this study, 213 Māori and 241 non-Māori in the cohort had died. National Health Index numbers were linked to the hospitalisation National Minimum Dataset to ascertain public hospitalisation and care home costs in the last year of life. ResultsThe average total publicly funded hospital and long-term care home costs in the 12 months prior to death were $16,211 and $17,351 for Māori and non-Māori respectively. Non-Māori tended to have long lengths of stay in their last year of life, and non-Māori men had the highest proportion with high costs and long lengths of stay in care homes. Costs in the last year of life were 8.1 times higher in comparison to costs for individuals who did not die in the same time period. ConclusionDespite New Zealand’s commitment to providing an equitable level of healthcare, this study illustrated that ethnic and gender disparities are still apparent at the end of life. This raises questions as to whether money at the end of life is being spent appropriately, and how it could potentially be more equitably targeted to meet the diverse needs of older people and their families.

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Costs of inpatient hospitalisations in the last year of life in older New Zealanders: a cohort study

BMC Geriatrics ◽

10.1186/s12877-021-02458-6 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Oliver W. Scott ◽

Merryn Gott ◽

Richard Edlin ◽

Simon A. Moyes ◽

Marama Muru-Lanning ◽

...

Keyword(s):

End Of Life ◽

Long Term Care ◽

Care Home ◽

Advanced Age ◽

Term Care ◽

Lengths Of Stay ◽

And Gender ◽

Minimum Dataset ◽

New Zealanders

Abstract Background Rapidly ageing populations means that many people now die in advanced age. This paper investigated public hospital and long-term care home costs in the 12 months before death in Māori and non-Māori of advanced age in New Zealand. Methods Data from an existing longitudinal study (LiLACS NZ) was used, in which 937 older New Zealanders were enrolled in 2010. At the time of this study, 213 Māori and 241 non-Māori in the cohort had died. National Health Index numbers were linked to the hospitalisation National Minimum Dataset to ascertain public hospitalisation and care home costs in the last year of life. Results The average total publicly funded hospital and long-term care home costs in the 12 months prior to death were $16,211 and $17,351 for Māori and non-Māori respectively. Non-Māori tended to have long lengths of stay in their last year of life, and non-Māori men had the highest proportion with high costs and long lengths of stay in care homes. Costs in the last year of life were 8.1 times higher in comparison to costs for individuals who did not die in the same time period. Conclusion Despite New Zealand’s commitment to providing an equitable level of healthcare, this study illustrated that ethnic and gender disparities are still apparent at the end of life. This raises questions as to whether money at the end of life is being spent appropriately, and how it could potentially be more equitably targeted to meet the diverse needs of older people and their families.

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PALLIATIVE AND END-OF-LIFE CARE TO THE LGBT COMMUNITY

Innovation in Aging ◽

10.1093/geroni/igz038.2322 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S623-S623

Author(s):

Gary L Stein ◽

Cathy Berkman

Keyword(s):

Older Adults ◽

Health Care ◽

End Of Life ◽

End Of Life Care ◽

Care Providers ◽

Term Care ◽

The Us ◽

Lgbt Community ◽

And Gender

Abstract The lesbian, gay, bisexual, and transgender (LGBT) community experiences discrimination and stigma in accessing health care and social services – including palliative, hospice, and long-term care – across cultures and countries. Health care providers may fail to recognize, acknowledge or address disparities in care. Providers and institutions may be uncomfortable with gender and sexuality issues, and often fail to inquire about sexual orientation and gender identity. It is estimated that there are approximately 2.7 million LGBT adults in the U.S. age 50 and older and approximately 1.1 million age 65 and older. In the UK, an estimated 5-7% of the population identify as LGBT; there are between 600,000 and 840,000 LGBT adults aged 65+. With the projected increased number of older adults and improved treatments that extend the life of seriously ill individuals, even greater numbers of LGBT older adults, and their families, will require palliative and end-of-life in the coming years. Researchers in the US and UK have found that LGBT older adults living in the community and in long-term care facilities experience inadequate, disrespectful, and abusive care due to their sexual orientation and gender identity status. They fear being open about their identities, not receiving equal or safe treatment, and having their family of choice and designated surrogates disrespected or ignored by health care staff. This symposium will describe the experiences of LGBT individuals and their family members, and compare commonalities and differences faced by LGBT communities in the US and UK in accessing palliative and end-of-life care.

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Exploring the experiences of nurses’ moral distress in long-term care of older adults: a phenomenological study

BMC Nursing ◽

10.1186/s12912-021-00675-3 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Alireza Nikbakht Nasrabadi ◽

Ahmad Hasyim Wibisono ◽

Kelly-Ann Allen ◽

Ameneh Yaghoobzadeh ◽

Yee Bit-Lian

Keyword(s):

Older Adults ◽

End Of Life ◽

Defense Mechanisms ◽

Long Term Care ◽

Moral Distress ◽

Phenomenological Study ◽

Structured Interviews ◽

Term Care ◽

Care Relationships

Abstract Background Moral distress is a poorly defined and frequently misunderstood phenomenon, and little is known about its triggering factors during ICU end-of-life decisions for nurses in Iran. This study aimed to explore the experiences of nurses’ moral distress in the long-term care of older adults via a phenomenological study. Methods A qualitative, phenomenological study was conducted with 9 participants using in-depth semi-structured interviews. The purpose was to gain insight into the lived experiences and perceptions of moral distress among ICU nurses in hospitals affiliated with Tehran University of Medical Sciences during their long-term care of older adults. Results Five major themes are identified from the interviews: advocating, defense mechanisms, burden of care, relationships, and organizational issues. In addition, several subthemes emerged including respectful end of life care, symptom management, coping, spirituality, futile care, emotional work, powerlessness, relationships between patients and families, relationships with healthcare teams, relationships with institutions, inadequate staffing, inadequate training, preparedness, education/mentoring, workload, and support. Conclusions This qualitative study contributes to the limited knowledge and understanding of the challenges nurses face in the ICU. It also offers possible implications for implementing supportive interventions.

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