Voices of African American, Caucasian, and Hispanic Surrogates on the Burdens of End-of-Life Decision Making

Braun, Ursula K.; Beyth, Rebecca J.; Ford, Marvella E.; McCullough, Laurence B.

doi:10.1007/s11606-007-0487-7

Cited by 181 publications

(158 citation statements)

References 42 publications

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“…Moreover, some studies have found that African Americans have higher rates of heart-failurerelated hospitalizations compared with Caucasians (Deswal, Petersen, Urbauer, Wright, & Beyth, 2006;Husaini et al, 2011). Historically African Americans have experienced inequality in the quality of health care they have received, and consequently may distrust the medical system, preferring active treatment over palliative care (Allen, Allen, Hilgeman, & DeCoster, 2008;Braun, Beyth, Ford, & McCullough, 2008;Givens Tjia, Zhou, Emanuel, & Ash, 2010;LaVeist, Nickerson & Bowie, 2000). These factors can have important implications for how African Americans approach medical care, their access to services, and their desire for medical information and treatment (Torke, Corbie-Smith, & Branch, 2004).…”

Section: Notice In Compliance With Publisher Policy: This Is An Authomentioning

confidence: 99%

Go to the Hospital or Stay at Home? A Qualitative Study of Expected Hospital Decision Making Among Older African Americans With Advanced Heart Failure

Hopp

Marsack

Camp

et al. 2013

Journal of Gerontological Social Work

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Section: Notice In Compliance With Publisher Policy: This Is An Authomentioning

confidence: 99%

Go to the Hospital or Stay at Home? A Qualitative Study of Expected Hospital Decision Making Among Older African Americans With Advanced Heart Failure

Hopp

Marsack

Camp

et al. 2013

Journal of Gerontological Social Work

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“…7 Studies designed to explore sources of difficulty in surrogate decision making have mainly examined external factors, such as uncertainty about prognosis or a loved one's preferences, poor communication or conflict with clinicians, or discomfort in the ICU environment. [8][9][10][11][12][13][14] Interventions to improve surrogate decision making similarly focus on strategies to provide better prognostic information, values clarification, and surrogateclinician communication. [15][16][17][18][19][20][21] There has been little exploration of how family members grapple with intrapersonal Electronic supplementary material The online version of this article (doi:10.1007/s11606-012-2129-y) contains supplementary material, which is available to authorized users.…”

Section: Introductionmentioning

confidence: 99%

I Don’t Want to Be the One Saying ‘We Should Just Let Him Die’: Intrapersonal Tensions Experienced by Surrogate Decision Makers in the ICU

et al. 2012

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“…Studies document surrogates' expressions of regret [9], self-blame [10,11], and doubt, with many surrogates asking themselves "Did I do the right thing?" after making a decision to withdraw life support [12], particularly when the patient's wishes were not known [13].…”

Section: Introductionmentioning

confidence: 99%

Acutely Bereaved Surrogatesʼ Stories About the Decision to Limit Life Support in the ICU

Núñez

Schenker

Joel

et al. 2016

Survey of Anesthesiology

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Objective-Participating in a decision to limit life support for a loved one in the intensive care unit (ICU) is associated with adverse mental health consequences for surrogate decision makers. We sought to describe acutely-bereaved surrogates' experiences surrounding this decision. HHS Public Access Author Manuscript Author ManuscriptAuthor Manuscript Author ManuscriptDesign and setting-Secondary analysis of interviews with surrogates approximately 4 weeks after a patient's death in one of 6 ICUs at 4 hospitals in Pittsburgh, Pennsylvania.Subjects-Adults who participated in decisions about life support in the ICU. Interventions-n/aMeasurements-We collected participant demographics, prior advance care planning, and decision control preferences. We used qualitative content analysis of transcribed interviews to identify themes in surrogates' experiences.Main results-The 23 participants included the spouse (n=7), child/step-child (7), sibling (5), parent (3), or other relation (1) of the deceased patient. Their mean age was 55, 61% were women, all were white, 74% had prior treatment preferences discussions with the patient and 43% of patients had written advance directives. 15/23 (65%) surrogates preferred an active decisionmaking role, 8/23 (35%) preferred to share responsibility with the physician and no surrogates preferred a passive role. Surrogates report that key stressors in the ICU are the uncertainty and witnessed or empathic suffering. These factors contributed to surrogates' sense of helplessness in the ICU. Involvement in the decision to limit life support allowed surrogates to regain a sense of agency by making a decision consistent with the patient's wishes and values, counteracting surrogates' helplessness and ending the uncertainty and suffering.Conclusions-In this all-white sample of surrogates with non-passive decision control preferences from a single US region, participating in decision making allowed surrogates to regain control, counteract feelings of helplessness, and end their empathic suffering. While prior research highlighted the distress caused by participation in a decision to limit life support, the act of decision making may, counter intuitively, help some surrogates cope with the experience.

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Voices of African American, Caucasian, and Hispanic Surrogates on the Burdens of End-of-Life Decision Making

Cited by 181 publications

References 42 publications

Go to the Hospital or Stay at Home? A Qualitative Study of Expected Hospital Decision Making Among Older African Americans With Advanced Heart Failure

Go to the Hospital or Stay at Home? A Qualitative Study of Expected Hospital Decision Making Among Older African Americans With Advanced Heart Failure

I Don’t Want to Be the One Saying ‘We Should Just Let Him Die’: Intrapersonal Tensions Experienced by Surrogate Decision Makers in the ICU

Acutely Bereaved Surrogatesʼ Stories About the Decision to Limit Life Support in the ICU

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