Minority patients face barriers to optimum end-of-life care

BOSTON — January 10, 2002— Minority groups in America have less access to many medical treatments, one of which is end-of-life care, according to a review article in the January Journal of the American Geriatrics Society. The authors look at why this is and what can be done to change it.

"There are many reports that provide evidence of ethnic differences in access to medical services in general and to end-of-life care in particular," says lead author Eric Krakauer, MD, PhD, of Massachusetts General Hospital’s Palliative Care Service. Among his examples, Krakauer cites a study demonstrating that fewer resources were used in caring for seriously ill African Americans than for other patients with similar illness severity and other studies that report lower use of analgesia for minority cancer patients with pain.

One of the most obvious reasons for disparities in health care involves health insurance, says Krakauer. He points out that minorities are twice as likely to be uninsured as European Americans. "I think our kids and grandkids will look back and wonder, ‘how could we allow forty million Americans, disproportionately minorities, to be without health insurance?’ " he says. "We need a better national plan."

Krakauer also says that there’s a problem with medical education. "There’s an under-representation of minorities in medicine, and that’s noteworthy because minority physicians are more likely to care for minority patients," he says. He also notes that affirmative action is being dismantled and minority applications and admissions to medical schools have been declining. "So the disparity is getting worse," he says.

Krakauer says another barrier to optimum end-of-life care for minorities is mistrust due to a long history of racism in medicine – the most notorious example being the Tuskegee Syphilis Study. He says that some patients may think that doctors will not make all treatment options available to them. "Such mistrust of the medical community is understandable because the medical community has not proven itself entirely trustworthy. But this can adversely affect end-of-life care, where trust is crucial."

Along those lines, cultural differences can complicate the patient-doctor relationship and make communication difficult. Krakauer says that physicians should seek to thoroughly understand each individual patient’s preferences for end-of-life care and not impose on them the values and goals of the dominant culture. Doctors may not be aware that cultural differences have an impact on such preferences. He points to several studies that found that African American patients were more likely than white patients to desire aggressive life support in the event of a terminal illness. Researchers have also found that a family-centered style of medical decision-making is common in some cultures. Therefore, physicians must be open to alternative forms of decision-making and of obtaining informed consent.

Krakauer and his colleagues have no easy answers on how to remove the barriers to end-of-life care for minorities. They do have some suggestions for starting to tackle the problem, though. These include implementing a single-payer health insurance program and reimbursement policies that provide incentives to hospitals and hospices for serving minorities and the poor. Their suggestions also include courses for medical students and clinicians on cultural sensitivity and affirmative action programs to improve access to medical education for minority students. The authors stress that more research needs to be done that takes into account all of the complexities of access to end-of-life care.

The article’s co-authors are Christopher Crenner, MD, PhD, of the Department of History and Philosophy of Medicine at the University of Kansas Medical School, and Ken Fox, MD, of the Department of Pediatrics at Boston University School of Medicine and the Department of Social Medicine at Harvard Medical School.

Massachusetts General Hospital, established in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH conducts the largest hospital-based research program in the United States, with an annual research budget of more than $300 million and major research centers in AIDS, the neurosciences, cardiovascular research, cancer, cutaneous biology, transplantation biology and photomedicine.

In 1994, the MGH joined with Brigham and Women’s Hospital to form Partners HealthCare System, an integrated health care delivery system comprising the two academic medical centers, specialty and community hospitals, a network of physician groups and nonacute and home health services.

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