Race Disparities Identified in End-of-Life Care
Minority patients receive more aggressive end-of-life interventions than white patients, according to the authors of a recent study.1
Researchers analyzed 349 Medicaid beneficiaries diagnosed from 2011 to 2015 with breast or colorectal cancer and died by January 2016. Of this group:
- 271 received at least one form of aggressive end-of-life care (27% were hospitalized more than once, 31% visited the ED more than once, 30% were admitted to an ICU, and 34% underwent chemotherapy);
- Non-Hispanic Black patients were more likely to receive aggressive end-of-life care than white patients.
“The ethical implications depend entirely on whether these interventions offer any benefit,” says Lydia Dugdale, MD, MAR (ethics), associate director of clinical ethics at NewYork-Presbyterian and director of the Columbia Center for Clinical Medical Ethics. Aggressive interventions for a dying patient are unlikely to provide any benefit at all. Dugdale says the more important ethical question is: Why do racial and ethnic minorities elect to undergo more aggressive and potentially futile treatments at the end of life?
“The answer has to do, in part, with the history of maltreatment of vulnerable populations,” Dugdale explains.
Some minority patients, or their family members, have been the recipients of substandard medical care previously. “It makes sense that members of such communities would insist, when death is imminent, that doctors use all the tools in their bags,” Dugdale offers.
Another possibility is that white doctors simply may not communicate effectively with non-white patients, Dugdale says. While doctors in rural Pennsylvania used similar verbal cues in discussing end-of-life issues with white and Black patients, they exhibited “significantly fewer positive, rapport-building nonverbal cues with Black patients,” according to the authors of one study.2
When compared with their white peers, racial and ethnic minorities also are less likely to have completed advance directives or appointed healthcare agents, Dugdale notes. “If no one has taken the time to educate persons of color about aggressive medical interventions, it is less likely they will be positioned to make fully informed decisions about care at the end of life,” she says.
Current racial disparities in healthcare may exacerbate disenfranchisement, leading to a cycle of lower health engagement and negative interactions with healthcare providers, including conflicts at the end of life, says Leslie M. Whetstine, PhD, a bioethicist at Aultman Hospital in Canton, OH, and a professor of philosophy at Walsh University. These experiences may engender skepticism toward the medical establishment generally.
In the context of end-of-life care, marginalized populations may question whether their best interests are safeguarded and whether all curative measures have been explored sufficiently.
“A reluctance to move from aggressive interventions to palliative care may be tied to medical mistrust compounded by centuries of structural injustices,” Whetstine says.
When clinicians consider disparities in hospice use at the end of life, the first reaction usually is to find ways to close the gap.
“But you must think about why that gap exists in the first place and why it continues to exist,” says Joshua D. Uy, MD, program director of the geriatric medicine fellowship at Penn Medicine.
For example, denial of cutting-edge healthcare is something that has occurred historically. “Experimentation on Black Americans and the mistrust that comes from it has continued,” Uy says. “Race-discordant care is the norm for Black patients.”
These issues facing Black Americans further complicate already-complex end-of-life decision-making. “When it comes to the end of life, and someone suggests pulling the patient off a ventilator, it comes with a different context than for a white patient,” Uy says.
A paternalistic “knee-jerk” reaction to force the gap to close could do more harm than good, according to Uy. “It is also about kindness: What is the kind response to the awareness of this gap?” he asks. “For physicians like myself, who are not Black, the next step would be to bridge a much deeper understanding of the issues that Black Americans face in end-of-life care, both historically and structurally.”
- Yang A, Goldin D, Nova J, et al. Racial disparities in health care utilization at the end of life among New Jersey Medicaid beneficiaries with advanced cancer. JCO Oncol Pract 2020;16:e538-e548.
- Elliott AM, Alexander SC, Mescher CA, et al. Differences in physicians’ verbal and nonverbal communication with Black and white patients at the end of life. J Pain Symptom Manage 2016;51:1-8.
Minority patients receive more aggressive end-of-life interventions than white patients, according to the authors of a recent study. The answer has to do, in part, with the history of maltreatment of vulnerable populations. Some minority patients, or their family members, have been the recipients of substandard medical care.
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