Those most in need are being left behind
Those most in need are being left behind
Minorities receive inadequate palliative care
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 in minority populations present significant barriers to minorities obtaining quality end-of-life care.
In the medical literature, they found numerous examples, he says.
For example, the SUPPORT (Study to Under-stand Progresses and Preferences for Outcomes and Risks of Treatment) investigators2,3 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.
Cleeland and colleagues4 studied 281 minority (mostly black and Hispanic) patients and 627 majority patients with cancer. They found that minority patients were significantly less likely to receive guideline-recommended analgesia.
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, he adds.
Multiple studies document decreased use of cardiac procedures for African Americans with coronary artery disease.7-11 Other studies found similar disparities in use of renal dialysis for African Americans with end-stage renal disease.12,13 Ayanian and colleagues found that quality of care was lower for black Medicare beneficiaries than for others hospitalized for congestive heart failure or pneumonia.14 And Ayanian’s group also found substantially lower access to renal transplantation for black than for white patients.15
Lack of insurance a culprit
The disparities can be explained, in part, by the higher rates of poverty and lower rates of health coverage among minority populations, says Krakauer. "Minorities are twice as likely to be uninsured as European-Americans."
A 1997 survey found that 14% of European Americans lacked health insurance, compared to 23% of African-Americans and 36% of Hispanic-Americans.
But there are other factors as well.
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, he says.
A study by Blackhall and colleagues,16 of European-American, African-American, and Korean-American senior citizens at a Los Angeles senior citizen center found significant differences of opinions about appropriate health care measures to be taken at the end of life.
"The questions asked were: Who should be told of a diagnosis of cancer? The patient, family, or neither? Who should be told of a terminal prognosis? The patient, the family, or neither? And who should make decisions about life support? The patient, the family, or the doctor?" Krakauer asks. "African-American and European-American respondents were much more likely to believe the patient should be told. Whereas, the Korean respondents were more likely to respond that the family members should be told and should make the decisions."
Ignorance on the behalf of health care providers 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 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 how to assess cultural values and attitudes in their individual patients during the individual patient encounters in order to make the best judgments about care, he says.
Issues of trust
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 transportation assistance.
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 recalls. "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?’"
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."
A variety of solutions exists
There are multiple barriers to access by minorities 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 school and medical programs.
"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, then, consequently, to fewer minority graduates. It is a pipeline problem."
Medical education should be expanded so that students understand how to ask patients about their cultural beliefs about health care to insure they provide care that is consistent.
"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. JAGS 1998; 46:1,091-1,096.
6. Todd KH, Samaroo N, Hoffman JR. Ethnicity as a risk factor for inadequate emergency department analgesia. JAMA 1993; 269:1,537-1,539.
7. Wenneker MB, Epstein AM. Racial inequalities in the use of procedures for patients with ischemic heart disease in Massachusetts. JAMA 1989; 261:253-257.
8. Johnson PA, Lee TH, Cook EF, et al. Effect of race on the presentation and management of patients with acute chest pain. Ann Intern Med 1993; 118:593-601.
9. Peterson ED, Wright SM, Daley J, et al. Racial variation in cardiac procedure use and survival following acute myocardial infarction in the department of Veterans Affairs. JAMA 1994; 271:1,175-1,180.
10. Peterson ED, Shaw LK, DeLong ER, et al. Racial variation in the use of coronary-revascularization procedures. N Engl J Med 1997; 336:480-486.
11. Gillum RF, Mussolino ME, Madans JH. Coronary heart disease incidence and survival in African-American men and women. Ann Intern Med 1997; 127:111-118.
12. Barker-Cummings C, McClellan W, et al. Ethnic differences in the use of peritoneal dialysis as initial treatment for end-stage renal disease. JAMA 1995; 274:1,858-1,862.
13. Kjellstrand CM, Logan GM. Racial, sexual, and age inequalities in chronic dialysis. Nephron 1987; 45:257-263.
14. Ayanian JZ, Weissman JS, Chasan-Taber S, et al. Quality of care by race and gender for congestive heart failure and pneumonia. Med Care 1999; 37:1,260-1,269.
15. Ayanian JZ, Cleary PD, Weissman JS, et al. The effect of patients’ preferences on racial differences in access to renal transplantation. N Engl J Med 1999; 341:1,661-1,669.
16. Blackhall LJ, Murphy ST, Frank G, et al. Ethnicity and attitudes toward patient autonomy. JAMA 1995; 274:820-825.
Sources
- Erik Krakauer, MD, Palliative Care Service, Massachusetts General Hospital, 55 Fruit St./ Founders 600, Boston, MA 02114.
- Richard Payne, MD, Pain Palliative Care Service, Memorial Sloan-Kettering Cancer Center, 1275 York Ave., New York, New York. 10021.
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