Race, Ethnicity, and End-of-Life Care in Dialysis Patients in the United States

Discussion

We observed that patients of minority race or ethnicity were less likely to discontinue dialysis, less likely to receive hospice care, and more likely to die in hospital than their non-Hispanic white counterparts. Across the breadth of end-of-life outcomes studied here, patterns were broadly similar for patients of non-Hispanic black and Asian race-ethnicity, and broadly similar for patients of non-Hispanic Native American race-ethnicity and Hispanic ethnicity. These disparities could not be explained by differences in age, demography, local income dispersion, urban-rural configuration, dialysis facility type, mode of insurance coverage, and recent illness profiles, and were evident in a wide range of subgroups.

The proportions of patients on dialysis dying in nonhospital or hospice settings in this study appeared low when compared with populations without ESKD. For example, among Medicare-insured participants in the Health and Retirement Survey who died between 1998 and 2012, the average age at death was 83 years and 29.3% died in hospital (versus 63.2% in patients on dialysis in our study) and 37.3% received hospice care (versus 14.7%).⁷ In nondialysis settings racial and ethnic disparities have also been described in many domains of end-of-life care, including access to palliative care, symptom alleviation, and communication.^8–10 Compared with white individuals, those from minority populations have a greater likelihood of death in a hospital setting, and those of black race or Hispanic ethnicity are at higher risks of being hospitalized and receiving intensive care in the last 6 months of life.¹¹ Several studies also suggest that individuals from black, Hispanic, and Asian minority populations are less well informed about advance directives and less likely to complete them.^12–14 Other studies have shown lower rates of hospice use for older adults from minority populations, across a wide variety of care settings, major diagnoses, and geographic regions.^15–19

Few studies have specifically focused on the nexus of race, ethnicity, dialysis withdrawal, hospice care, and death outside of conventional hospital settings. This being said, unexplained disparities have been observed in related domains of care. For example, one study reported that Hispanic patients on dialysis were more likely to undergo intensive medical procedures such as ventilation, tracheostomy, feeding enterostomy, and cardiopulmonary resuscitation in the last 6 months of life.²⁰ Other studies comparing black to white patients showed that in-hospital death, dialysis discontinuation, and hospice referral differed substantially between the two racial populations examined, as well as across regions of the United States.^21–23

Our study differs from these informative studies in a number of ways. One difference from preexisting research in this area is that, because the analysis relied on the Death Notification Form, as opposed to Medicare claims, we were able to describe patterns of end-of-life care for groups without Medicare Parts A and B coverage. In this regard, it was notable that adjusted race-and-ethnicity–associated odds ratios for our primary outcome were similar in the subgroups with insurance provided by Medicare Parts A and B and health maintenance organizations. Another potentially novel aspect of this study was the examination of racial-ethnic disparities within regions of different income dispersion. Regarding regional income dispersion, it was notable that adjusted race-and-ethnicity–associated odds ratios for our primary outcome were similar in all levels examined.

In particular, having focused on several minority groups, we found that non-Hispanic white patients on dialysis were the outlier with regard to end-of-life care. Although our study cannot accurately assess the role of patient-related and non–patient-related factors in our findings, the observation that end-of-life care differed between nonminority and the combined minority population, as well as between individual minority groups, tempts one to speculate that the causes of the disparities seen in this study may be multifaceted; for example, if end-of-life care was entirely decided by an entity other than the individual patient, and this entity uniformly treated individuals from the majority population in one way, and individuals from minority populations in another way, one would not expect to see differences between minority groups.

This study has limitations, including its retrospective, registry-based design and the use of reimbursement claims to define comorbidity close to death. Another limitation of our study is the fact that the variables contained in the USRDS Death Notification Form file have not been formally validated. Confronted with substantial racial and ethnic biases at the level of health delivery systems, careful, prospective confirmatory studies are needed to characterize attitudes and belief systems regarding end-of-life issues, both among health care recipients and health care providers.

Despite its limitations, our study may have useful features. It is nationally representative and the large sample sizes help to generate precise association estimates, within the overall population and within multiple subgroups. Given that ongoing illness is likely to influence end-of-life care, the ability to capture comorbid illness present may be advantageous, because it tends to counter the hypothesis that racial and ethnic disparities in end-of-life care are explicable by differences in illness profiles.