scholarly journals End-of-Life Plans for African American Older Adults With Dementia

2018 ◽  
Vol 35 (10) ◽  
pp. 1314-1322 ◽  
Author(s):  
Karen O. Moss ◽  
Nancy L. Deutsch ◽  
Patricia J. Hollen ◽  
Virginia G. Rovnyak ◽  
Ishan C. Williams ◽  
...  
Keyword(s):  
Older Adults ◽  
African American ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Life Care ◽  
Life Planning ◽  
Care Recipients ◽  
Life Plans ◽  
End Of Life Planning

African Americans are perceived to be least likely of all racial and ethnic groups to prepare for the end of life. However, verbal plans for the end of life are of particular importance to this population and may help understand why they are less likely to possess a formal end-of-life care planning document. The purpose of this study was to determine the number of formal and/or informal end-of-life care plans that existed among a convenience sample of African American older adults with dementia. For this descriptive study, data were collected from African American family caregivers (N = 65) of older adults with dementia. Descriptive statistics were conducted. Caregivers in this sample reported high rates of formal and/or informal end-of-life plans for their care recipients. Agency forms (power of attorney, health-care surrogate, or guardianship forms) had been obtained by 74% of the care recipients, while 63% of them possessed a formal end-of-life care planning document. All combined, 88% of the caregivers possessed at least 1 document or verbal information concerning end-of-life care for their care recipient or at least there was an assigned surrogate. Although limited, these findings reflect more end-of-life planning in this population than previous studies reported and could improve the quality of end-of-life outcomes in this population by giving health-care providers increased understanding of African American end-of-life planning preferences. This may, in turn, help the providers to inform and educate these care recipients and their family caregivers.

End of Life Care and Reactions to Death in African-American and White Family Caregivers of Relatives with Alzheimer's Disease

2001 ◽  
Vol 43 (4) ◽  
pp. 349-361 ◽  
Author(s):  
Jason E. Owen ◽  
Kathryn T. Goode ◽  
William E. Haley
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
African American ◽  
End Of Life ◽  
Family Caregivers ◽  
Ethnic Differences ◽  
End Of Life Care ◽  
The United States ◽  
Life Care ◽  
White Caregivers

Family caregivers for relatives with Alzheimer's Disease (AD) often experience significant stress-related problems in mental and physical health. Patients with AD often survive for protracted periods of time, placing an extensive burden of care on the caregiver prior to the patient's death. The present study addresses ethnic differences in the experience of AD caregivers around the time of their loved one's death, including life-sustaining treatment decisions and reactions to death. The results showed that, in our sample, more patients died in their homes than has been reported for deaths in the United States. African-American and White caregivers differed substantially in their reports of end of life care and subjective reactions to the death. Compared with White caregivers, African-American caregivers were less likely to make a decision to withhold treatment at the time of death, less likely to have their relative die in a nursing home, and reported less acceptance of the relative's death and greater perceived loss. Results suggest that death after AD caregiving deserves further study, and that ethnic differences in end of life care and bereavement may be of particular importance.

scholarly journals “End-of-Life Care? I’m not Going to Worry About That Yet.” Health Literacy Gaps and End-of-Life Planning Among Elderly Dialysis Patients

2017 ◽  
Vol 58 (2) ◽  
pp. 290-299 ◽  
Author(s):  
Keren Ladin ◽  
Katie Buttafarro ◽  
Emily Hahn ◽  
Susan Koch-Weser ◽  
Daniel E Weiner
Keyword(s):  
Health Literacy ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Dialysis Patients ◽  
Life Planning ◽  
End Of Life Planning

scholarly journals Inpatient Hospitalization of Oncology Patients: Are We Missing an Opportunity for End-of-Life Care?

2013 ◽  
Vol 9 (1) ◽  
pp. 51-54 ◽  
Author(s):  
Gabrielle B. Rocque ◽  
Anne E. Barnett ◽  
Lisa C. Illig ◽  
Jens C. Eickhoff ◽  
Howard H. Bailey ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Symptom Control ◽  
Life Care ◽  
Oncology Patients ◽  
Inpatient Hospitalization ◽  
Life Planning ◽  
Oncology Service ◽  
End Of Life Planning

The authors conclude that the inpatient oncology service predominantly cares for a population nearing the end of life; therefore, goals should include symptom control and end-of-life planning.

scholarly journals THAT’S MY CREATOR’S REALM: UNDERSTANDING AFRICAN AMERICAN ASSISTED LIVING RESIDENTS’ END-OF-LIFE PREFERENCES

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S637-S637
Author(s):  
Candace L Kemp ◽  
Alexis A Bender ◽  
Tammie Quest ◽  
Mary H Coyle ◽  
Molly M Perkins
Keyword(s):  
Older Adults ◽  
African American ◽  
End Of Life ◽  
Assisted Living ◽  
End Of Life Care ◽  
Participant Observation ◽  
Life Care ◽  
Term Care ◽  
Advanced Directives ◽  
Care Community

Abstract Assisted living, one of the fastest growing formal long-term care options for older adults in the U.S., increasingly is a site for end-of-life care.. Most residents are non-Hispanic and white, yet African Americans reside in these settings and relatively little is known about their end-of-life preferences. In this paper, we present an analysis of data collected as part of a larger five-year mixed-methods NIA-funded study (R01AG047048) examining end of life in assisted living. We analyze longitudinal qualitative data collected over two years in a large (>90 beds) care community catering to African American older adults. Drawing on 850 hours of participant observation, in-depth interviews with 25 residents, and record review data, we seek to: (a) understand residents’ end-of-life preferences; and b) identify how and why preferences vary. Guided by principles of grounded theory, our analysis shows that most preferred a death where “you go to sleep and never wake up.” Yet, residents varied in their preferences for the timing and location of death, nature of end-of-life care, and use of advanced directives. Age, health, health literacy, perceived quality of life, and not wanting to be a burden all influenced preferences. For most, religious beliefs were a key factor shaping these preferences. Perceiving that end of life, including how, when, where one dies, and the nature of suffering and care, ultimately is their “creator’s realm,” led to the near universal conclusion: “I got no control over it.” We discuss implications of these findings for improving end-of-life care for African American residents.

Navigating the caregiving abyss: A metasynthesis of how family caregivers manage end-of-life care for older adults at home

2021 ◽  
pp. 026921632110429
Author(s):  
Jacqueline Michaels ◽  
Chiahui Chen ◽  
Mary Ann Meeker
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Multiple Roles ◽  
Professional Organizations ◽  
Life Care ◽  
Home Setting ◽  
Education Interventions ◽  
At Home

Background: Demographic changes (global aging, decreased fertility, increased home deaths) will present a critical need for end-of-life family caregivers of older adults at home. In order to support these family caregivers, we need to better understand their experiences, struggles, and needs. Aim: To describe and explain the process of end-of-life caregiving as experienced by family caregivers of older adults residing in the home setting. Design: The Preferred Reporting Items for Systematic Reviews and Metaanalysis (PRISMA) guidelines and Sandelowski and Barroso’s procedural steps for a metasynthesis review guided this study. Data sources: Qualitative and mixed methods literature from CINAHL, Medline, PsycINFO, and EMBASE databases and information from professional organizations were reviewed for studies that focused on family caregivers providing end-of-life care to older adults residing in the home setting. Results: A total of 24 studies were identified. Family caregivers engaged in the process of “navigating a caregiving abyss” when providing and managing end-of-life-care for older adults at home. The “caregiving abyss” consisted of four phases: (1) managing multiple roles, (2) encountering challenges, (3) mobilizing resources, and (4) acknowledging death is near. During the process family caregivers strived to “live day by day” and “maintain normalcy” to achieve the goals of honoring life’s final wishes and provide home death. Conclusion: Family caregivers of older adults at the end of life navigate a variety of challenges. The findings provide a conceptual framework to help guide the development of education, interventions, and health policy to meet family caregivers’ needs in providing quality end-of-life care.

scholarly journals Placing the Preferences of People with Profound Intellectual and Multiple Disabilities At the Center of End-of-Life Decision Making Through Storytelling

2019 ◽  
Vol 44 (4) ◽  
pp. 267-279 ◽  
Author(s):  
Joanne Watson ◽  
Hille Voss ◽  
Melissa J. Bloomer
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Narrative Approaches ◽  
Life Planning ◽  
End Of Life Planning ◽  
Advance Care ◽  
End Of Life Decision ◽  
Decision Making Support

With a focus on the use of narrative approaches, this article is a commentary on decision-making support for people with profound intellectual and multiple disability (PIMD) at the end-of-life. Due to improved health care, people with PIMD are living longer lives than ever before. Therefore, they are increasingly facing decisions relating to end-of-life care and planning. Despite the increased attention that has been given to end-of-life planning, opportunities to have preferences responded to at the end-of-life are more likely afforded to people considered to have cognitive and decision-making capacity. Those supporting people with PIMD to plan for and make decisions about end-of-life care face several challenges. These challenges are rooted in difficulties with communication exchange between people with PIMD and their communication partners, leading to a widely held perception of decision-making incompetence for this population. In response to this challenge, this article draws on empirical research to discuss decision-making support within the context of palliative care and advance care planning, specifically for people with PIMD. It promotes decision-making support as an approach to assist supporters of people with PIMD to allow those people’s expressions of preferences to be acknowledged and acted upon at the end-of-life. The use of narrative is presented and discussed as a tool for enabling this responsiveness, specifically within the context of end-of-life planning.

scholarly journals Singaporean Dementia Caregivers’ Preference for Care Recipients’ Life-Extending Interventions

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 541-541
Author(s):  
Chetna Malhotra ◽  
Hazirah Mohamad ◽  
Truls Østbye ◽  
Kathryn Pollak ◽  
Bharathi Balasundaram ◽  
...  
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Health Care Providers ◽  
End Of Life Care ◽  
Tube Feeding ◽  
Community Dwelling ◽  
Life Care ◽  
Care Providers ◽  
Severe Dementia ◽  
Care Recipients

Abstract Family caregivers of older adults with severe dementia are decisive in use of potentially life-extending interventions for their care recipients. We conducted in-depth interviews with 26 caregivers of community-dwelling older adults with severe dementia in Singapore to assess their preferences for intravenous (IV) antibiotics for a life threatening infection, tube feeding, and cardiopulmonary resuscitation (CPR), and reasons thereof. Most caregivers’ (77%) end-of-life care goal was ‘no life extension’. Yet, 80%, 60% and 45% preferred IV antibiotics, tube feeding and CPR, respectively, as they: 1) perceived letting go by withholding interventions as unethical, 2) felt they had no choice, deferring to health care providers (HCPs), 3) wanted to alleviate suffering, and 4) desired trying minimally invasive (and potentially withdrawable) interventions. There was discordance between caregivers’ end-of-life care goal and preferences for life-extending interventions. HCPs can suggest intervention options that concur with caregivers’ end-of-life care goal, and use a shared decision-making approach. Part of a symposium sponsored by the Aging Among Asians Interest Group.

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