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Abstract: FR-PO869

Informal Advance Care Planning in Black Patients With Kidney Failure

Session Information

Category: Diversity and Equity in Kidney Health

  • 800 Diversity and Equity in Kidney Health


  • Fisher, Marlena, Johns Hopkins University, Baltimore, Maryland, United States
  • Crews, Deidra C., Johns Hopkins University, Baltimore, Maryland, United States
  • Perrin, Nancy A., Johns Hopkins University, Baltimore, Maryland, United States
  • Sanders, Justin J., McGill University, Montreal, Quebec, Canada
  • Abshire Saylor, Martha, Johns Hopkins University, Baltimore, Maryland, United States
  • Nolan, Marie T., The Catholic University of America, Washington, District of Columbia, United States

Research examining advance care planning (ACP) in kidney failure patients is primarily assessed in research by written advance directives. Black patients have limited representation in ACP research, and many prefer informal conversations. We examined the relationship of informal ACP conversations with personal, interpersonal, and structural level factors.


We conducted a concurrent mixed-methods study including a survey and semi-structured interviews to identify personal, interpersonal, and structural factors related to engagement in informal ACP conversation. We conducted a survey of 280 Black patients who are on dialysis or have a history of being on dialysis. We conducted twenty semi-structured interviews using maximum variation sampling among survey respondents focused on the content, context, barriers and facilitators of informal ACP conversations. Multivariable logistic regression, thematic analysis, and triangulation were used to analyze the data.


Sixty-six percent engaged in an informal ACP conversation and 38% completed an advance directive. Of the 197 patients who engaged in informal ACP conversations, 51% also completed an advance directive. Mean age was 56 years, 52% were female, and 68% are currently treated with dialysis. In preliminary bivariate analyses of informal ACP, illness acceptance (OR 1.07, p=0.016), social support (emotional OR 1.12, p=0.002; Instrumental OR 1.09, p=0.005; informational OR 1.13, p=0.00), education (OR 1.32, p=0.18), and previous experience as a surrogate decision maker (OR 1.89, p=0.017) increased the likelihood of engaging in informal ACP. The interviews revealed that the content often includes financial, healthcare, and funeral planning wishes. These conversations often follow a health status change like a hospitalization or a worsening in their condition. Key facilitators were having a strong trusted social support system and past experience with ACP or a loved one dying. Barriers included distrust of family to carry out their wishes as outlined and a discomfort/avoidance of having informal ACP conversations.


Informal ACP conversations with family occur more frequently than written directives in Black dialysis patients. Future efforts should assess the patient’s social support system and target interventions to engage patients with limited support networks.


  • Other NIH Support