Racial Disparities in End-of-Life Communication and Preferences among Chronic Kidney Disease Patients

Abstract

Background: Previous studies on end-of-life (EOL) care among patients with chronic kidney disease (CKD) have been largely limited to White hemodialysis patients. In this study, we sought to explore racial variability in EOL communication, care preferences and advance care planning (ACP) among patients with advanced CKD prior to decisions regarding the initiation of dialysis. Methods: We performed a cross-sectional study between 2013 and 2015 of Black and White patients with stage IV or V CKD (per the Modified Diet in Renal Disease estimation of GFR <30 ml/min/1.73 m²) from 2 academic centers in Boston. We assessed experiences with EOL communication, ACP, EOL care preferences, hospice knowledge, spiritual/religious and cultural beliefs, and distrust of providers. Results: Among 152 participants, 41% were Black. Black patients were younger, had less education, and lower income than White patients (all p < 0.01). Black patients also had less knowledge of hospice compared to White patients (17 vs. 61%, p < 0.01). A small fraction of patients (8%) reported having EOL discussions with their nephrologists and the majority had no advance directives. In multivariable analyses, Blacks were more likely to have not communicated EOL preferences (adjusted OR 2.70, 95% CI 1.08-6.76) and more likely to prefer life-extending treatments (adjusted OR 3.06, 95% CI 1.23-7.60) versus Whites. Conclusions: As Black and White patients with advanced CKD differ in areas of EOL communication, preferences, and hospice knowledge, future efforts should aim to improve patient understanding and promote informed decision-making.

Outcomes of in‐hospital cardiopulmonary resuscitation for patients with end‐stage liver disease

“…Hispanic race was independently associated with poorer survival after in‐hospital CPR in patients with ESLD, a finding that warrants further investigation. Prior studies have shown that patients of Hispanic origin have a higher likelihood of receiving intensive medical care at end‐of‐life compared to patients from other racial/ethnic groups . These findings have been attributed to various factors, such as cultural and religious beliefs, language barriers, overly optimistic beliefs in the effectiveness of life‐prolonging therapies and reduced rates of code status documentation in this population .…”

Health Literacy Matters More Than Experience for Advance Care Planning Knowledge Among Older Adults

“…We also found independent relationships between ACP knowledge and other sociodemographic factors, including Spanish language and nonwhite race, similar to other studies. 32,33 Prior studies, however, did not assess health literacy, preferred language, finances, or social support. Reasons for these associations may overlap with reasons why these groups have lower rates of ACP, including differences in access to care and varying levels and acculturation and cultural differences.…”

Health Literacy Mediates Racial Disparities in Cardiopulmonary Resuscitation Knowledge among Chronic Kidney Disease Patients

“…9, 33 Patients may feel more inclined to have discussions with their providers whom they feel comfortable with however, relationships with health care providers may have less of an impact on subsequent treatment decision-making among minority racial patients. For instance, Smith et al showed that although the quality of the physician-patient relationship (e.g., perceived respect, listening, help in navigating the medical system) was lower among Black patients compared with White patients, this did not influence advance care planning or preferences for life-sustaining treatments.…”

“…9 However, given the higher incidence of limited health literacy among Black patients, there is evidence that health literacy is a mediator of racial disparities across several parts of care. 10–13 Limited health literacy impedes an individual’s capacity to understand basic information to make informed medical decisions and approximately 28–32% of patients with CKD are afflicted.…”