There Are Racial Disparities In End-of-Life Care, Too

Many studies have shown racial disparities in health care, from access to treatment to different outcomes for similar illnesses.

A new study adds to the range of illnesses demonstrating such disparities. The research from the Icahn School of Medicine at Mount Sinai looked at Medicare beneficiaries enrolled in a national random sample of 577 hospices around the country from 2009-10. Of 145,000 Medicare beneficiaries in these hospices for end of life care, 92 percent were white patients and 8 percent black patients. Most of the hospice programs were urban; half were for profit.

There were striking differences in outcomes. “Black hospice patients were significantly more likely than white hospice patients to be admitted to the hospital (14.9 percent vs 8.7 percent), to go to the emergency room (19.8 percent vs. 13.5 percent), and to disenroll from hospice prior to death (18.1 percent vs. 13.0 percent),” according to researcher Melissa Aldridge. The differences “were attributable to racial differences within hospices rather than systemic differences between hospices in these outcomes,” she added. This suggests cultural/social differences between hospice patients.

Why were there such differences? Are there similar differences in end-of-life choices for patients of Asian, Pacific Islander, or Native American background? How about for other ethnic groups? Little is known about such how such cultural differences influence health decisions.

Several studies show more hospitalizations and aggressive end-of-life care for Blacks. A recent study from University of Washington's Fred Hutchinson Cancer Research Center found more aggressive treatment in non-white patients with leukemia, and also that Blacks were less likely to have end-of-life directives.

Another, from N.Y.'s Weill Cornell, found Blacks with metastatic cancer overestimated how long they were likely to survive, and that their conclusion was largely based on personal beliefs (65%) or religious beliefs (35%). In contrast, white patients based their estimates on personal beliefs (72%) or information from physicians (21%). Notably, none of the Black patients reported basing their Life Expectancy Estimates on information from medical providers.

Racial differences in outcomes don’t just affect end-of-life care. It extends through the entire life span. For example, Sudden Infant Death Syndrome (SIDS) affects Blacks at twice the rate of Whites, according to Dr. Fern Hauck, University of Virginia professor. Much of her research focuses on SIDS and the social (racial, ethnic and cultural) factors that affect risk of death in infants.

Cultural competence includes knowledge and interpersonal skills that allow providers to understand, appreciate, and work effectively with individuals from cultures other than their own. It is a fascinating and underappreciated topic needing more attention. When writing my text, Conducting Clinical Research (available as the free Aaron Swartz memorial pdf), I became aware of Dr. Hauck’s work on this, as it applies to recruiting minorities to participate in clinical trials. She also incorporates this topic in her teaching.

Health literacy is often defined as the “degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.” For end-of-life care, health literacy did not seem to account for racial differences in decision making.

That there would be some racial differences in end-of-life decision making seems likely based on mistrust in physicians and health systems, not a surprise given history. (The same legacy of mistrust is a barrier to participation in clinical research). Another problem is that most oncologists are white; their cultural, educational, and life experiences are very different than that of many of their patients. This same issue poses many barriers in caring for our immigrant patients, with language and cultural barriers.

In order to provide better care for all, much more work needs to be done on understanding such cultural and racial differences in decision making and in treatment outcomes. That requires that we continue to make decisions that are evidence-based and factors in diversity. We can’t make science-based policies without exploring all these factors.

My book, "Conducting Clinical Research: A Practical Guide," can be found here. For more medical/pharma news and perspective, follow me on Twitter @drjudystone or here at Forbes