Strengthening End-of-Life Care for African-American Patients and Families through Education and Community Outreach

2013 ◽  
Vol 67 (1-2) ◽  
pp. 115-119 ◽  
Author(s):  
Eric C. Holmstrom
Keyword(s):  
African American ◽  
End Of Life ◽  
Healthcare System ◽  
End Of Life Care ◽  
Effective Means ◽  
Healthcare Providers ◽  
Community Outreach ◽  
Life Care ◽  
Unique Challenge ◽  
History Of

Care for African-American patients and families at the end of life presents a unique challenge to healthcare providers. Providers need to be culturally and historically competent to effectively serve persons with a long history of distrust of the white-dominated healthcare system. Effective means of addressing outreach, access, and service issues for this community need to be twofold. They must focus on those who deliver the care and those who receive it. This twofold focus inspired the education and community outreach that were key elements in this ACE Project. The resources of the Duke Institute on Care at the End of Life (ICEOL), particularly their APPEAL curriculum, was key to strengthening end-of-life care in the internal culture of Abington Memorial Hospital and the community they serve.

scholarly journals Preferences for Advance Directives in Korea

2012 ◽  
Vol 2012 ◽  
pp. 1-7 ◽  
Author(s):  
So-Sun Kim ◽  
Won-Hee Lee ◽  
JooYoung Cheon ◽  
Jung-Eun Lee ◽  
KiSun Yeo ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Healthcare Providers ◽  
Tube Feeding ◽  
Life Care ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Korean People ◽  
End Stage

Background. The goal of advance directives is to help patients retain their dignity and autonomy by making their own decisions regarding end-stage medical treatment. The purpose of this study was to examine preferences of advance directives among general population in Korea.Method. A descriptive cross-sectional survey was performed from October 2007 to June 2008 in Seoul, Korea. A total of 336 city-dwelling adults self-administered the questionnaire and returned it via mail. Data analyses were conducted using SPSS 17.0.Results. Subjects reported the need for healthcare providers' detailed explanations and recommendations regarding end-of-life care. When there is no hope of recovery and death is imminent, most subjects did not want to receive cardiopulmonary resuscitation nor an IV or tube feeding. However, most of the subjects wanted pain management care.Conclusions. The present study showed that many Korean people have an interest in advance directives. The results show that the autonomy and dignity of patient have increased in importance. To provide better end-of-life care, there is a need to educate patients on the definition and intent of an advance directive. Additional proactive communication between patients and their caregivers should be educated to healthcare providers.

Utilizing Watson’s Theory of Human Caring and Hills and Watson’s Emancipatory Pedagogy to Educate Hospital-Based Multidisciplinary Healthcare Providers About Hospice

2012 ◽  
Vol 16 (4) ◽  
pp. 42-49 ◽  
Author(s):  
Alyx Iversen, ◽  
Loralee Sessanna,
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Providers ◽  
Life Care ◽  
Care Needs ◽  
Theoretical Frameworks ◽  
Emancipatory Pedagogy ◽  
Hospice Referral ◽  
Theory Of Human Caring ◽  
Human Caring

Hospice offers holistic human caring that embraces every individual as a unique physical, mental, emotional, social, and spiritual entity. To holistically address and fulfill end-of-life care needs, wishes, and preferences for terminally ill patients and their families, early healthcare provider referral to hospice is crucial. Utilizing Watson’s (2012a) theory of human caring and Hills and Watson’s (2011) emancipatory pedagogy for nursing as theoretical frameworks, this article proposes an approach to educating multidisciplinary healthcare providers on the importance of and need for early hospice referral to promote quality holistic, meaningful, respectful, dignified, and compassionate end-of-life care.

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.

scholarly journals Do young adults see value in advance directives?

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 850-850
Author(s):  
Yuchi Young ◽  
Arianna Stone ◽  
Taylor Perre ◽  
Kuo-Piao Chung ◽  
Ya-Mei Chen
Keyword(s):  
New York ◽  
Young Adults ◽  
End Of Life ◽  
End Of Life Care ◽  
New York State ◽  
Healthcare Providers ◽  
Population Based ◽  
Life Care ◽  
Study Results ◽  
Attitude Toward Ads

Abstract Many Americans avoid end-of-life care planning; only 26% have completed an advance directive (AD). An AD promotes end-of-life care with dignity allowing individuals to make end-of-life treatment and care decisions before they are unable to do so. Previous studies related to ADs are focused on older adults with serious illness or people with functional/mental disability. The objective of this survey is to better understand young adults' knowledge of and attitude toward ADs and their preferences for ADs related to treatment and care options. Methods. Participants include graduate students (n=25) attending a state university in New York State (NYS). Data were collected using two ADs (Five Wishes; Medical Orders for Life-Sustaining Treatment (MOLST)) and one survey questionnaire. Summary statistics and multivariate models will be used to address the study aims. Results. Preliminary results show the average age was 23 years, 72% were female, 48% White, and 44% Black. The majority of young adults hadn’t completed an AD; however, their attitude toward ADs was positive; the majority believe it is important to have an AD prepared at their current age; and they believe young adults would willing to fill out ADs. Young adults can make difficult treatment and care decisions when the situation requires it. Conclusion. The study findings can be useful to policy makers, healthcare providers and other stakeholders in promoting population-based healthcare decision-making. Limitation. Participants were recruited from one university in NYS; thus, the study results may be generalized to a population sharing similar characteristics.

Cancer versus non-cancer caregivers: An analysis of communication needs from the 2015 Caregivers in the U.S. study.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 4-4 ◽  
Author(s):  
Erin E. Kent ◽  
Margaret Longacre ◽  
Lisa Weber-Raley ◽  
C. Grace Whiting ◽  
Gail Hunt
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Statistical Significance ◽  
Panel Study ◽  
Healthcare Providers ◽  
Care Recipient ◽  
Life Care ◽  
Cancer Caregivers ◽  
Nationally Representative ◽  
The U.S

4 Background: Informal caregiving for cancer patients can be both demanding and burdensome – physically, emotionally, and financially – for many caregivers. Cancer caregivers play a large role in advocating for and administering care for their recipients. The current study aimed to explore if cancer caregivers differ from non-cancer caregivers with regard to communicating with healthcare providers, and need for information about end-of-life care. Methods: Data were used from the 2015 Caregiving in the U.S. (CGUS) dataset, a nationally-representative online probability-based panel study of unpaid adult caregivers. The analysis compared cancer and non-cancer caregivers to determine similarities and differences in characteristics and experiences, with a focus on unmet needs in communication with healthcare providers and end-of-life decision-making. Statistical significance was determined at the p < 0.05 level. Results: Approximately 7% (2.8 million) of caregiver participants in the CGUS study indicate cancer as the primary reason for providing care. Cancer caregivers report higher burden than non-cancer caregivers (62% vs. 38%) and significantly more hours per week caregiving (32.9 vs. 23.9 hours per week). Significantly more cancer caregivers indicate interacting with key providers, agencies, and professionals on behalf of their care recipients: 82% report communicating with healthcare professionals (vs. 62%), 76% monitor/adjust care (vs. 66%), and 62% report advocating for care recipient (vs. 49%). Finally, almost twice the number of cancer caregivers than non-cancer caregivers (40% vs. 21%) report needing more help/information with making end-of-life decisions. Conclusions: These findings indicate the burdensome and demanding role of cancer caregiving. These caregivers play a substantial role in directing, monitoring, and advocating for survivor care. Yet, many need more information about end-of-life care. This suggests a gap in preparation despite the roles provided, and suggest a need to explore strategies to engage patient-provider-caregiver communication about care, particularly end of life care.

Comfort while Dying: a Transnational History of Pediatric End of Life Care

2018 ◽  
Author(s):  
Emilie Hill-Smith
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Well Being ◽  
Life Care ◽  
The Public ◽  
Depth Analysis ◽  
Personal Experiences ◽  
History Of ◽  
Being There

Through an in-depth analysis of current and historical literature, this thesis explores the question: what is hospice and end of life care for children? I will dissect the various dimensions of children’s hospice care and how it has evolved over time. Also in my thesis, I will draw from my personal experiences in volunteering at a children’s hospice to discuss the support and care that volunteers receive. Through this literature review I hope to bring to light to a subject that is often overlooked or too difficult for people to discuss. I will propose plans to better the care for children and families who are facing the end of life. My thesis will summarize the current literature available about the type of care that children receive worldwide and how this care affects families and children’s well-being. There has been minimal research done on children in end of life due to the topic’s sensitive nature. My goals is to inform the public of an under discussed but important topic in paediatric medicine.

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