Daniel Ahn1, Shellie Williams2, Nicole Stankus3, Milda Saunders4. 1. The University of Chicago Pritzker School of Medicine, Chicago, Illinois, USA. 2. Geriatrics and Palliative Care, University of Chicago Medicine, Chicago, Illinois, USA. 3. Section of Nephrology, University of Chicago Medicine, Chicago, Illinois, USA. 4. General Internal Medicine, University of Chicago Medicine, Section of Nephrology, Chicago, Illinois, USA.
Abstract
BACKGROUND: African Americans in the general population have been shown to be less likely than White ethnic groups to participate in advance care planning; however, advance care planning in the population receiving dialysis has not been well explored. OBJECTIVE: We examined the prevalence of African American patients receiving haemodialysis' advance care planning discussions, and whether advance care planning impacts end-of-life care preferences. DESIGN: In-person interviewer-administered surveys of African American patients receiving in-centre haemodialysis. SETTING/PARTICIPANTS: About 101 participants at three large dialysis organisation units in Chicago. OUTCOMES: Self-reported advance care planning and preferences for life-extending treatments at end-of-life. RESULTS: Most patients (69%) report no advance care planning discussions with their healthcare providers. Nearly all patients (92%) without prior advance care planning reported their healthcare providers approached them about advance care planning. While the majority of patients indicated preference for aggressive life-extending care, prior conversations about end-of-life care wishes either with family members or a healthcare provider significantly decreased patients' likelihood of choosing aggressive life-extending care across three scenarios (all p < 0.05). Significantly more patients reported that common end-of-life scenarios related to increased dependence/disability were "not worth living through" compared with those associated with increased burden on family, decreased cognitive function, and severe pain/discomfort. CONCLUSION: African Americans with end-stage renal disease need more frequent, culturally-sensitive advance care planning discussions. Despite a preference for aggressive life-sustaining treatments, individuals with prior advance care planning discussions were significantly less likely to support aggressive end-of-life care. End-of-life care discussions that focus on the impact of life-extending care on patients' independence could be more concordant with the values and priorities of the African American patients.
BACKGROUND: African Americans in the general population have been shown to be less likely than White ethnic groups to participate in advance care planning; however, advance care planning in the population receiving dialysis has not been well explored. OBJECTIVE: We examined the prevalence of African American patients receiving haemodialysis' advance care planning discussions, and whether advance care planning impacts end-of-life care preferences. DESIGN: In-person interviewer-administered surveys of African American patients receiving in-centre haemodialysis. SETTING/PARTICIPANTS: About 101 participants at three large dialysis organisation units in Chicago. OUTCOMES: Self-reported advance care planning and preferences for life-extending treatments at end-of-life. RESULTS: Most patients (69%) report no advance care planning discussions with their healthcare providers. Nearly all patients (92%) without prior advance care planning reported their healthcare providers approached them about advance care planning. While the majority of patients indicated preference for aggressive life-extending care, prior conversations about end-of-life care wishes either with family members or a healthcare provider significantly decreased patients' likelihood of choosing aggressive life-extending care across three scenarios (all p < 0.05). Significantly more patients reported that common end-of-life scenarios related to increased dependence/disability were "not worth living through" compared with those associated with increased burden on family, decreased cognitive function, and severe pain/discomfort. CONCLUSION: African Americans with end-stage renal disease need more frequent, culturally-sensitive advance care planning discussions. Despite a preference for aggressive life-sustaining treatments, individuals with prior advance care planning discussions were significantly less likely to support aggressive end-of-life care. End-of-life care discussions that focus on the impact of life-extending care on patients' independence could be more concordant with the values and priorities of the African American patients.
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