Advance care planning among African American patients on haemodialysis and their end-of-life care preferences

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.

Keywords: African Americans; advance-care planning; end-stage renal disease; haemodialysis; patient-reported outcome measures.