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Barriers to Optimum End-Of-Life Care for Minority Patients Eric L

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Barriers to Optimum End-Of-Life Care for Minority Patients Eric L ETHNOGERIATRICS AND SPECIAL POPULATIONS Barriers to Optimum End-of-life Care for Minority Patients Eric L. Krakauer, MD, PhD,* † Christopher Crenner, MD, PhD,‡ and Ken Fox, MD†§ Although major efforts are underway to improve end-of- ward physicians and end-of-life care. Based on this review, life care, there is growing evidence that improvements are specific types of barriers to optimum end-of-life care for not being experienced by those at particularly high risk for minority patients are identified, and strategies for lowering inadequate care: minority patients. Ethnic disparities in ac- the barriers are proposed. cess to end-of-life care have been found that reflect dispar- ities in access to many other kinds of care. Additional barri- BARRIERS TO MEDICAL CARE IN GENERAL FOR ers to optimum end-of-life care for minority patients include MINORITY PATIENTS insensitivity to cultural differences in attitudes toward death Large disparities exist between use of the most varied medi- and end-of-life care and understandable mistrust of the cal services by minorities and use of the same services by healthcare system due to the history of racism in medicine. European Americans. At least some of this lower use is due These barriers can be categorized as institutional, cultural, to decreased access.20–22 Evidence of disparities is most plen- and individual. Efforts to better understand and remove each tiful for African Americans. Multiple studies document de- type of barrier are needed. Such efforts should include quality creased use of cardiac procedures for African Americans assurance programs to better assess inequalities in access to with coronary artery disease.23–27 Other studies found similar end-of-life care, political action to address inadequate disparities in use of renal dialysis for African Americans health insurance and access to medical school for minori- with end-stage renal disease.28,29 Ayanian et al. found that ties, and undergraduate and continuing medical education quality of care was lower for black Medicare beneficiaries in cultural sensitivity. J Am Geriatr Soc 50:182–190, than for others hospitalized for congestive heart failure or 2002. pneumonia.30 Ayanian’s group also found substantially Key words: culture; ethnicity; medical ethics; minorities; lower access to renal transplantation for black than for palliative care; race; trust; terminal illness white patients.31 This finding remained after controlling for patients’ preferences and other factors. It also has been found that older African American women receive mammography less often than socioeconomically and demographically matched European American women,32,33 and that non- white (mostly African American) pneumonia patients were he medical literature contains abundant evidence that less frequently admitted to intensive care units than similarly care for terminally ill patients needs improvement.1–4 T 34 Numerous barriers to high-quality end-of-life care have ill and similarly insured European American patients. 1–3,5–19 Likewise, ethnic disparities were found in rates of surgery been identified. Although major efforts have been 35,36 undertaken in the past decade to improve end-of-life care, for early-stage non-small–cell lung cancer and glaucoma. there is growing evidence that improvements are not Another study found that black Medicare patients hospital- ized with heart failure or pneumonia received poorer quality reaching those at especially high risk for inadequate end- 37 of-life care: minority patients. This paper explores barriers of care than other patients. In a large study of Medicare to optimum end-of-life care that particularly affect minor- beneficiaries, Kahn et al. showed that “patients who are ity patients. Current knowledge in several relevant do- black or from poor neighborhoods have significantly worse processes of care and greater instability at discharge than mains is reviewed, including ethnic differences in access to 38 medical services and cultural differences in attitudes to- other patients.” A second large study of Medicare benefi- ciaries by Gornick et al. found that African Americans have fewer visits to physicians for ambulatory care, fewer mam- mograms, and fewer immunizations against influenza than From the *Palliative Care Service, Massachusetts General Hospital, Boston, Massachusetts; †Department of Social Medicine, Harvard Medical School, European Americans. African Americans are also hospital- Boston, Massachusetts; ‡Department of History and Philosophy of Medi- ized more often, have higher rates of lower-limb amputation cine, University of Kansas Medical School, Kansas City, Kansas; and for peripheral vascular disease and bilateral orchiectomy for § Department of Pediatrics, Boston University School of Medicine, Boston, prostate cancer, and have higher mortality rates. These dif- Massachusetts. 39 Address correspondence to Eric L. Krakauer, MD, PhD, Palliative Care ferences remained after controlling for income. Service, Massachusetts General Hospital, 55 Fruit Street/Founders 600, It is clear that lack of insurance is a major barrier to Boston, MA 02114. receiving health care and that minority Americans are at JAGS 50:182–190, 2002 © 2002 by the American Geriatrics Society 0002-8614/02/$15.00 JAGS JANUARY 2002–VOL. 50, NO. 1 BARRIERS TO END-OF-LIFE CARE FOR MINORITIES 183 least twice as likely to be uninsured as European Ameri- a qualitative ethnographic approach to evaluate the needs cans.40 Other causes for these ethnic disparities in access and concerns of black and white nursing home residents and outcomes are less clear and have not been empirically with terminal cancer. They concluded that pain relief was proven. The search for causes is complex. Studies that use inadequate for the black residents.65 different methods, populations, or variables or that define A study of analgesia use in a large Los Angeles emer- variables differently are not easily comparable. Although gency department found that Hispanic trauma patients many studies of such disparities may control for “race” or were twice as likely to receive no pain medication as non- socioeconomic status, or even for more specific variables Hispanic white patients with similar injuries despite the such as income or insurance, the meanings of these terms fact that physician assessment of pain severity did not dif- are not standardized and sometimes remain unclear. Possi- fer between the two groups.66,67 In a similar study of black ble causes or associations include unmeasured socioeco- and white patients in an Atlanta emergency department, nomic factors such as differences in insurance type, avail- blacks were significantly less likely than whites to receive ability of transportation, and job and familial obligations; analgesics.68 In a survey of pharmacies in New York City, cultural differences in attitudes toward or preferences for Morrison et al. found that pharmacies in predominantly health care; and actual and perceived racial bias at individ- non-white neighborhoods do not stock sufficient medica- ual and institutional levels.41,42 Further clarification of these tions to treat patients with severe pain.69 Although these possible social, economic, institutional, cultural, and psycho- studies did not focus on analgesia for terminally ill pa- logical barriers to optimum care for minority patients is par- tients, they too indicate that undertreatment of pain dis- ticularly important because of poorer overall health among proportionately affects minorities. African Americans and Latinos as measured by various pa- rameters.40,43 These include higher infant and maternal mor- Ethnic Differences in Preference for End-of-Life Care tality rates,44,45 shorter life expectancy (for African Ameri- A number of studies reveal differences between ethnic groups cans),46 and higher incidence of many diseases associated in attitudes toward end-of-life care. A difference between with high morbidity and mortality, such as diabetes melli- African Americans and European Americans in attitudes tus, hypertension, end-stage renal disease, cardiovascular toward life-sustaining treatment and advance directives is disease, stroke, some cancers, tuberculosis, and acquired particularly well documented. Multiple studies show that immunodeficiency syndrome (AIDS).43,47–50 African Americans prefer aggressive life-sustaining treat- Decreased access to care for minorities is reflected in ment more often than European Americans. In their study decreased access to medical school for the same groups. of African American, Mexican-American, Korean-Ameri- Minorities continue to be underrepresented in medical can, and European American senior citizens in Los Ange- schools, in the medical profession, and on medical school les, Blackhall et al. found that African Americans were the faculties at all levels.51–54 The recent assault on affirmative most likely to want life-sustaining treatment, whereas Eu- action is already making this underrepresentation worse, ropean Americans were least likely.70 Caralis et al. found especially in the states that dropped affirmative action that African Americans were less likely than Hispanics or first: California, Texas, Louisiana, and Mississippi.55–57 More non-Hispanic European Americans to want “physician- states plan to follow suit. Minority physicians are known assisted death” under any circumstances or to want life-pro- to care disproportionately for underserved, poor, and mi- longing treatments withheld or withdrawn. Non-Hispanic nority patients.58,59
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