Study: Minorities lack access to palliative care
April 1, 2002
Study: Minorities lack access to palliative care
Those most in need are being left behind
Although numerous initiatives have been launched nationwide to improve the care of terminally ill and chronically ill patients, disturbing evidence is emerging that the patients most in need of good palliative care are not getting it.
"We assembled a huge amount of data showing that minorities, African-Americans in particular, have unequal use of a wide variety of medical resources," says Erik Krakauer, MD, PhD, associate director of the Palliative Care Service at Massachusetts General Hospital in Boston. "Significant evidence of unequal access also extends to end-of-life care."
Krakauer and colleagues at Massachusetts General published a review of studies of minority access to palliative care services in the January issue of the Journal of the American Geriatrics Society.1 They conclude that a combination of factors, including poor rates of insurance coverage, lack of sensitivity to differing cultural attitudes about death and dying, and mistrust of the health care system among minority populations present significant barriers to minorities obtaining quality end-of-life care.
They found numerous studies in the medical literature supporting these conclusions, he says.
For example, the SUPPORT investigators demonstrated that, in five major medical centers, fewer resources were used in caring for seriously ill African-Americans than for other patients with similar illness severity and sociodemographics.2,3 Cleeland and colleagues studied 281 minority (mostly black and Hispanic) patients and 627 Caucasian patients with cancer. They found that minority patients were significantly less likely to receive guideline-recommended analgesia.4 A study of analgesia use in a large Los Angeles emergency department found that Hispanic trauma patients were twice as likely to receive no pain medication as non-Hispanic white patients with similar injuries, in spite of the fact that physician assessment of pain severity did not differ between the two groups.5,6
Complicating matters is the fact that minorities also face significant barriers to obtaining basic primary care services and to obtaining the more expensive high-tech treatments for serious illness, Krakauer adds. Multiple studies have documented decreased use of cardiac procedures for African-Americans with coronary artery disease. Other studies found similar disparities in use of renal dialysis for African-Americans with end-stage renal disease.
The disparities can be explained, in part, by the higher rates of poverty and lower rates of health insurance coverage among minority populations. "Minorities are twice as likely to be uninsured as European-Americans," Krakauer says. A 1997 survey found that 14% of European-Americans lacked health insurance, compared to 23% of African-Americans and 36% of Hispanic-Americans.
Attitudes vary by culture
Other problems include the fact that different cultural attitudes toward illness and toward health care providers often present challenges for clinicians, and these challenges are more pronounced when the patient is facing a life-threatening illness, Krakauer notes.
Health care providers’ ignorance of such differences of opinion can have devastating consequences for terminally ill patients, he emphasizes.
"If you talk to the son of an elderly Korean woman with gastric cancer and he indicates that he should be the one to make decisions about her health care, and you insist on informing her of her condition and asking her to make the decisions, you may be causing serious distress and confusion," he says. "She may not expect or want to make these decisions."
Clinicians should not assume, however, that just because a patient is of a particular ethnicity or background that he or she holds these particular attitudes, Krakauer hastens to add. "You can’t assume that because someone is Korean that they don’t want to make their own decisions, or that because someone is Muslim that they don’t want certain kinds of care."
Physicians need better training in medical school and beyond in how to assess cultural values and attitudes in their patients during the individual patient encounters in order to make the best judgments about care, he says.
Another barrier to obtaining optimal end-of-life care is a certain level of mistrust of the health care system by minorities, particularly in the African-American community.
"There has been a history of broken trust between the health care system in this country and this group, the most egregious example being the Tuskegee experiment, but there have been others," says Krakauer.
Suspicion of the motives of the established health care system has been a significant factor in preventing minorities, particularly African-Americans, from seeking information about palliative care services or formulating advance directives, says Richard Payne, MD, chief of the pain and palliative care service at Memorial Sloan-Kettering Cancer Center and consulting attending physician at North General Hospital, both in New York City.
Payne helped establish the Harlem Palliative Care Network, a group of physicians, pharmacies, churches, and community organizations that work to improve medical care for seriously ill Harlem residents by improving access to pain management, respite care, support groups, and assistance with transportation.
To establish the network, Payne and others sought the help of local community leaders and clergy.
"One pastor I spoke to asked, Why are we talking about this end-of-life stuff and not high-dose chemotherapy treatments or cardiac catheterization?’" he says. "’How am I to believe the hospital has our best interests in mind? How many African-American and Latino physicians do you have on staff?’"
Reaching patients before crisis hits
To better improve Harlem residents’ access to palliative care, the network conducts educational seminars at community organizations and churches and asks community members to "refer" members of their family with serious medical problems, even if the patients are not terminally ill. "We want to see these patients and get them services before they present in crisis," he explains.
Increasing the trust of these patients is the challenge and responsibility of the health care community, he adds.
"The break of trust has been on the part of the health system, and it is our responsibility to get it back," he says. "What we really need to be talking about is improving care at any stage of illness, access to cancer drugs, certain treatments, and then, quality care if your disease has progressed to the point where no cure is possible."
Minorities face multiple barriers to access that have multiple causes, Krakauer argues, and there are a number of actions that need to be taken to find a remedy.
First, health plans must begin offering incentives — and not disincentives — to health care providers to take care of the most vulnerable patients, the poor and elderly with serious medical conditions, he says.
Second, more efforts must be made to recruit more minority students to medical schools.
"Studies have shown that minority physicians take care of a larger-than-their-share percentage of poor patients and minority patients," he says. "These are the physicians who are taking care of our vulnerable patients, and we see fewer and fewer minority students admitted to medical schools, and then, consequently, fewer minority graduates. It is a pipeline problem."
Medical education needs to be expanded so that students know how to ask patients about their cultural beliefs about health care, Krakauer says.
"We can never assume we know what a patient will want," he says. "Once you do, you are guaranteed to violate someone."
References
1. Krakauer EK, Crenner C, Fox K. Barriers to optimum end-of-life care for minority patients. J Am Geriatr Soc 2002; 49.
2. Phillips RS, Hamel MB, Teno JM, et al. Race, resource use, and survival in seriously ill hospitalized adults. J Gen Intern Med 1996; 11:387-396.
3. Borum ML, Lynn J, Zhong Z. The effects of patient race on outcomes in seriously ill patients in SUPPORT: an overview of economic impact, medical intervention, and end-of-life decisions. J Am Geriatr Soc 2000; 48:S194-S198.
4. Cleeland CS, Gonin R, Baez L, et al. Pain and treatment of pain in minority patients with cancer. Ann Intern Med 1997; 127:813-816.
5. Engle VF, Fox-Hill E, Graney MJ. The experience of living-dying in a nursing home: self-reports of black and white older adults. J Am Geriatr Soc 1998; 46:1091-1096.
6. Todd KH, Samaroo N, Hoffman JR. Ethnicity as a risk factor for inadequate emergency department analgesia. JAMA 1993; 269:1537-1539.
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