Dialogues in Diversity: An Invited Series of Papers, Advance Directives, DNRs, and End-of-Life Care for African Americans

2006 ◽  
Vol 52 (3) ◽  
pp. 249-261 ◽  
Author(s):  
Ronald Keith Barrett
Keyword(s):  
African American ◽  
African Americans ◽  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Clinical Care ◽  
Life Care ◽  
Advanced Directives ◽  
Culturally Sensitive Care ◽  
Care Giving

The article utilizes a meta-analysis of the existing empirical research and theory on health care directives to provide some insights into the documented pattern of African Americans to use advance directives less than Whites. A number of relevant factors are highlighted and examined. In addition the article attempts to provide some insights into African American family life and traditional values regarding the care of the elderly and end-of-life care. The African American tradition of employing a family-centered decision making process during family crisis, as well as a significant cultural mistrust of institutionalized care is also explored. The article also attempts to offer some practical suggestions for clinical care givers working with African Americans to enhance culturally sensitive care giving and the utilization of advanced directives among African Americans at the end-of-life.

scholarly journals Assessment of Knowledge and Preferences Regarding Advance Directives Among Patients in University Family Medicine Outpatient Clinics

2020 ◽  
Vol 6 ◽  
pp. 233372142090190
Author(s):  
Ismet Koşar ◽  
Melahat Akdeniz ◽  
Ethem Kavukcu ◽  
Hasan Huseyin Avci
Keyword(s):  
Family Medicine ◽  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Outpatient Clinics ◽  
Life Care ◽  
Advanced Directives ◽  
Face To Face ◽  
Care Family ◽  
Life Sustaining Treatment

Aim: The aim of this study is to draw attention to the subject of “advanced directives,” to create awareness, whether or not they want to investigate to determine the preferences for medical care and applications in the period of end-of-life while individuals can specify their preferences and wishes for medical decisions and take steps for it. Materials and Methods: The study was carried out on individuals aged 20 years and older in family medicine outpatient clinics. A questionnaire consisting of 30 questions was applied to 300 people who volunteered to participate in the study by a face-to-face interview. Results: Of all participants, 70% had not heard of advance directives (ADs) before this survey. Three quarters of participants thought that advanced directives were necessary. The rate of requesting cardiopulmonary resuscitation (CPR) to prolong survival in the case of end-of-life care was 55%; the rate of requesting the continuation of life-sustaining treatment was 24%. Conclusion: Most participants want their own decision to be taken into account in end-of-life care. Family physicians should talk to their patients about ADs via effective communication when people are still healthy.

scholarly journals The Desires of Their Hearts: The Multidisciplinary Perspectives of African Americans on End-of-Life Care in the African American Community

2016 ◽  
Vol 34 (6) ◽  
pp. 510-517 ◽  
Author(s):  
Ramona L. Rhodes ◽  
Bryan Elwood ◽  
Simon C. Lee ◽  
Jasmin A. Tiro ◽  
Ethan A. Halm ◽  
...  
Keyword(s):  
Palliative Care ◽  
African American ◽  
African Americans ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
Culturally Sensitive Intervention

Background: Studies have identified racial differences in advance care planning and use of hospice for care at the end of life. Multiple reasons for underuse among African American patients and their families have been proposed and deserve further exploration. Objective: The goal of this study was to examine perceptions of advance care planning, palliative care, and hospice among a diverse sample of African Americans with varying degrees of personal and professional experience with end-of-life care and use these responses to inform a culturally sensitive intervention to promote awareness of these options. Methods: Semistructured interviews and focus groups were conducted with African Americans who had varying degrees of experience and exposure to end-of-life care both personally and professionally. We conducted in-depth qualitative analyses of these interviews and focus group transcripts and determined that thematic saturation had been achieved. Results: Several themes emerged. Participants felt that advance care planning, palliative care, and hospice can be beneficial to African American patients and their families but identified specific barriers to completion of advance directives and hospice enrollment, including lack of knowledge, fear that these measures may hasten death or cause providers to deliver inadequate care, and perceived conflict with patients’ faith and religious beliefs. Providers described approaches they use to address these barriers in their practices. Conclusion: Findings, which are consistent with and further elucidate those identified from previous research, will inform design of a culturally sensitive intervention to increase awareness and understanding of advance care planning, palliative care, and hospice among members of the African American community.

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.

What Do Adults With HIV Want? End-of-Life Care Goals, Values and Beliefs by Gender, Race, Sexual Orientation

2021 ◽  
pp. 104990912098828
Author(s):  
Katherine B. Grill ◽  
Jichuan Wang ◽  
Rachel K. Scott ◽  
Debra Benator ◽  
Lawrence J. D’Angelo ◽  
...  
Keyword(s):  
African American ◽  
African Americans ◽  
End Of Life ◽  
End Of Life Care ◽  
Odds Ratio ◽  
Self Determination ◽  
Hiv Care ◽  
Life Care ◽  
Care Plans ◽  
Advance Care

Objective: We examined factors influencing end-of-life care preferences among persons living with HIV (PLWH). Methods: 223 PLWH were enrolled from 5 hospital-based clinics in Washington, DC. They completed an end-of-life care survey at baseline of the FACE™-HIV Advance Care Planning clinical trial. Findings: The average age of patients was 51 years. 56% were male, 66% heterosexual, and 86% African American. Two distinct groups of patients were identified with respect to end-of-life care preferences: (1) a Relational class (75%) who prioritized family and friends, comfort from church services, and comfort from persons at the end-of-life; and (2) a Transactional/Self-Determination class (25%) who prioritized honest answers from their doctors, and advance care plans over relationships. African Americans had 3x the odds of being in the Relational class versus the Transactional/Self-determination class, Odds ratio = 3.30 (95% CI, 1.09, 10.03), p = 0.035. Males were significantly less likely to be in the relational latent class, Odds ratio = 0.38 (CI, 0.15, 0.98), p = 0.045. Compared to non-African-Americans, African-American PLWH rated the following as important: only taking pain medicines when pain is severe, p = 0.0113; saving larger doses for worse pain, p = 0.0067; and dying in the hospital, p = 0.0285. PLWH who were sexual minorities were more afraid of dying alone, p = 0.0397, and less likely to only take pain medicines when pain is severe, p = 0.0091. Conclusion: Integrating culturally-sensitive palliative care services as a component of the HIV care continuum may improve health equity and person-centered care.

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

2018 ◽  
Vol 36 (5) ◽  
pp. 362-369 ◽  
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.

Frequency and determinants of advance directives concerning end-of-life care in The Netherlands

2006 ◽  
Vol 62 (6) ◽  
pp. 1552-1563 ◽  
Author(s):  
Mette L. Rurup ◽  
Bregje D. Onwuteaka-Philipsen ◽  
Agnes van der Heide ◽  
Gerrit van der Wal ◽  
Dorly J.H. Deeg
Keyword(s):  
The Netherlands ◽  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Life Care

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.

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