Approaching the End of Life: Attitudes, Preferences, and Behaviors of African-American and White Patients and Their Family Caregivers

Phipps, Etienne; True, Gala; Harris, Diana; Chong, Umi; Tester, William J.; Chavin, Stephen I.; Braitman, Leonard E.

doi:10.1200/jco.2003.12.080

Cited by 187 publications

(166 citation statements)

References 15 publications

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“…1 Our data certainly provide further evidence that this federal mandate has been largely ineffective and that information about ADs is not read or understood by a significant proportion of hospitalized adults. 21 The effects of ethnicity on advance care planning Previous studies examining ethnic differences in advance care planning have focused on preferences, with multiple studies showing a preference for more invasive, aggressive care at the end of life [11][12][13][14] and lower rates of hospice utilization among African Americans and Latinos. 22,23 Qualitative research suggests that health inequality and poor access to care …”

Section: Low Rates Overall Of Reported Advance Directive Discussion mentioning

confidence: 99%

“…11 Ethnic minorities also tend to express a greater preference for death in a hospital rather than at home 11,12 and appear less likely to complete ADs. 11,14 Multiple barriers to AD completion have been identified including language, lack of knowledge, poor communication, and a perception that having family involved obviated the need for an AD. [15][16][17] In a recent study of patients with advanced cancer, the presumed influences, such as religiousness, treatment preferences, and acknowledgement of terminal diagnosis, were not associated with the ethnic differences in advance care planning.…”

mentioning

confidence: 99%

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Advance Directive Discussions: Lost in Translation or Lost Opportunities?

Fischer

Sauaia

Min

et al. 2012

Journal of Palliative Medicine

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Background: Previous studies have shown that minority populations have low rates of documented advance directives and express preferences for more life-prolonging interventions at the end of life. We sought to determine the impact of Latino ethnicity on patients' self-report of having an advance directive discussion and having a completed advance directive in the medical record at an index hospitalization for serious medical illness. Methods: This was a prospective observational cohort study of 458 adults admitted to the general medical services of a safety net hospital, an academic medical center, and a Veterans' Affairs (VA) hospital. Patients were asked if they had discussed advance directives, and we reviewed medical records for documented advance directives. Results: Overall, 45% of patients reported having had a discussion about advance directives (29% of Latinos compared with 54% of Caucasians, p = 0.0002) and 24% of patients had a completed advance directive in their medical record (25% Latinos and 26% of Caucasians, p = not significant [ns]). Using logistic regression modeling and adjusting for socioeconomic status (SES), education level, and language spoken, Latinos (odds ratio [OR] 0.42, confidence interval [CI] 0.24-0.75) were less likely to report having advance directive discussions compared with Caucasians (referent). However, modeling of a completed advance directive in the medical record showed no significant difference between Latinos (OR 1.44, CI 0.73-2.85) and Caucasians (referent). Conclusions: The unexpected discrepancy we found highlights the need for more effective communication in advance care planning that includes education that is culturally sensitive and accessible to persons with low health literacy.

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Section: Low Rates Overall Of Reported Advance Directive Discussion mentioning

confidence: 99%

mentioning

confidence: 99%

Advance Directive Discussions: Lost in Translation or Lost Opportunities?

Fischer

Sauaia

Min

et al. 2012

Journal of Palliative Medicine

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“…This fi nding supports data from outside the ICU that indicate a preference for more life-prolonging treatment at the end of life in African American patients. [11][12][13] We can be obtained from the medical record alone, and surveying patients or family members introduces important biases through nonresponse that is infl uenced by race/ethnicity. 56 Fourth, we did not assess severity of illness on ICU admission.…”

Section: Discussionmentioning

confidence: 99%

“…10 Differences in endof-life care within the ICU setting may be the result of health-care disparities as well as due to other factors, such as treatment preferences, that are different across racially and ethnically diverse groups. [11][12][13] There is evidence of disparities in end-of-life care, with racial minorities receiving lower quality of care than whites. 14,15 Eliminating racial and ethnic disparities in end-of-life care will require a better understanding of the sources of these differences.…”

Section: Data Collection and Variablesmentioning

confidence: 99%

The Influence of Race/Ethnicity and Socioeconomic Status on End-of-Life Care in the ICU

Muni

Engelberg

Treece

et al. 2011

Chest

167

129

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A growing body of evidence demonstrates the existence of important racial and ethnic differences in health care. Although many studies report on disparities in health care for acute and chronic conditions, 1-5 relatively few address racial disparities in the ICU, and those report confl icting fi ndings. Some have reported that black patients receive fewer medical interventions, 6,7 have shorter lengths of stay, and use fewer resources. 7 In contrast, others have found increased resource utilization, including larger numbers of ICU admissions and higher numbers of medical interventions for minority than for white patients. 8,9 Background: There is confl icting evidence about the infl uence of race/ethnicity on the use of intensive care at the end of life, and little is known about the infl uence of socioeconomic status. Methods: We examined patients who died in the ICU in 15 hospitals. Race/ethnicity was assessed as white and nonwhite. Socioeconomic status included patient education, health insurance, and income by zip code. To explore differences in end-of-life care, we examined the use of (1) advance directives, (2) life-sustaining therapies, (3) symptom management, (4) communication, and (5) support services. Results: Medical charts were abstracted for 3,138/3,400 patients of whom 2,479 (79%) were white and 659 (21%) were nonwhite (or Hispanic). In logistic regressions adjusted for patient demographics, socioeconomic factors, and site, nonwhite patients were less likely to have living wills (OR, 0.41; 95% CI, 0.32-0.54) and more likely to die with full support (OR, 1.59; 95% CI, 1.30-1.94). In documentation of family conferences, nonwhite patients were more likely to have documentation that prognosis was discussed (OR, 1.47; 95% CI, 1.21-1.77) and that physicians recommended withdrawal of life support (OR, 1.57; 95% CI, 1.11-2.21). Nonwhite patients also were more likely to have discord documented among family members or with clinicians (OR, 1.49; 95% CI, 1.04-2.15). Socioeconomic status did not modify these associations and was not a consistent predictor of end-of-life care. Conclusions: We found numerous racial/ethnic differences in end-of-life care in the ICU that were not infl uenced by socioeconomic status. These differences could be due to treatment preferences, disparities, or both. Improving ICU end-of-life care for all patients and families will require a better understanding of these issues.

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“…In such studies, ethnicity strongly affects the final endof-life decision. [12][13][14][15][16][17][18][19][20][21][22] In addition, in Korea and in other Asian nations, for most patients with malignant disease, family members do not want the patient to be informed of the exact status of his or her disease and sometimes do not even want the patient be informed that malignant disease has been diagnosed. The result is that patient autonomy cannot be procured at the time at which end-of-life decisions are made, and thus physicians usually discuss such decisions only with family members, who cannot always speak for the patient's exact treatment preferences.…”

mentioning

confidence: 99%

Discrepancies among patients, family members, and physicians in Korea in terms of values regarding the withholding of treatment from patients with terminal malignancies

Kim

Lee

et al. 2004

Cancer

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BACKGROUND The role of the physician in end‐of‐life decision‐making is complicated. To analyze the controversies that surround therapeutic decision‐making and the withholding of life‐sustaining treatments, the authors compared values regarding therapeutic intervention that were held by physicians and family members of patients with terminal malignancies. METHODS One hundred fourteen patients with either advanced‐stage or terminal disease were enrolled in the current study. Questionnaires were administered to the duty physician and to patients' family members. The questions covered issues such as the use of new anticancer agents with only partial efficacy (15%) and the use of opioid analgesics, intravenous nutrition, feeding tubes, antibiotics, and hemodialysis. In addition, participants were asked about the administration of cardiopulmonary resuscitation (CPR) and the use of ventilators, and when the patient's family consented, the same questionnaire was administered to the patient as well. RESULTS Seventeen of 114 families refused to answer the questionnaire. Of the 97 available families, only 14 permitted access to the patient. Of those 14 patients, 5 refused to complete the questionnaire. Overall, 100% of families and 87% of patients had some knowledge regarding malignant disease, but only 69% of families and 37% of patients clearly understood the stage of the patient's disease. The use of a new agent with only partial efficacy (≈ 15%) was accepted by 41% of physicians and by 60% of families. The concordance rate between patients' physicians and family members regarding the same patient was 42%. The rankings of the acceptance of treatment by physicians were as follows: opioid analgesics, 100%; antibiotics, 91%; feeding tube, 87%; and intravenous nutrition, 78%. The rankings of the same items by family members were as follows: opioid analgesics, 92%; antibiotics, 89%; intravenous nutrition, 86%; and feeding tube, 75%. The concordance rates between patients' physicians and families were lowest for ventilator application (39%) and CPR (47%). CONCLUSIONS Values held on issues such as therapeutic decision‐making and the withholding of life‐sustaining treatment for patients with terminal malignancies were discordant between physicians and family members. To resolve controversies regarding the role of the physician in end‐of‐life decision‐making, the values of physicians, patients, and family members should be considered in the final decision‐making process. Cancer 2004. © 2004 American Cancer Society.

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Approaching the End of Life: Attitudes, Preferences, and Behaviors of African-American and White Patients and Their Family Caregivers

Cited by 187 publications

References 15 publications

Advance Directive Discussions: Lost in Translation or Lost Opportunities?

Advance Directive Discussions: Lost in Translation or Lost Opportunities?

The Influence of Race/Ethnicity and Socioeconomic Status on End-of-Life Care in the ICU

Discrepancies among patients, family members, and physicians in Korea in terms of values regarding the withholding of treatment from patients with terminal malignancies

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