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http://nap.edu/12875

Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (2003)

780 pages | 6 x 9 | HARDBACK ISBN 978-0-309-08265-5 | DOI 10.17226/12875

Brian D. Smedley, Adrienne Y. Stith, and Alan R. Nelson, Editors; Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care; Board on Health Sciences Policy; Institute of Medicine

Institute of Medicine 2003. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: The National Academies Press. https://doi.org/10.17226/12875.

Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care

Copyright National Academy of Sciences. All rights reserved.

392

D

Racial Disparities in Healthcare: Highlights from Focus Group Findings

Meredith Grady Tim Edgar

Westat 1650 Research Boulevard

Rockville, Maryland June 2001

STORIES OF RACIAL DISCRIMINATION IN HEALTHCARE PRACTICE

Racial discrimination occurs on many levels, in a variety of contexts, intertwined with income, education level, and other sociodemographic factors. It can be subtle or disturbingly overt. During the eight focus groups, participants were asked to talk about their own personal experi- ences with racism in healthcare. When asked whether discrimination ex- ists in receiving quality healthcare, one African-American participant summed up the collective response in this way: “The medical world just reflects the real world.” Throughout the following section, participants’ stories and opinions are presented in their own words, providing evi- dence of healthcare inequity that participants attributed directly or indi- rectly to racial or ethnic discrimination, their lack of English-language proficiency, or both.

Effect of Stereotyping

Participants often felt that the quality of health care services they re- ceived stemmed from misperceptions and stereotypes, not the reality of who they are. They said they often feel that health care providers treat them differently and assume they are less educated, poor, or deserving of less respect because of their race or culture. A Hispanic physician, speak- ing of the perceptions of his colleagues, corroborated participants’ opin- ions that health care providers make assumptions about their patients based on race or ethnicity. “As soon as they look at the patient and see

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he’s African American or Latino, they assume automatically that he doesn’t have insurance at all.”

The following quotes provide examples of encounters that partici- pants had with healthcare providers who made stereotypical assumptions about their education or culture.

My name is . . . [a common Hispanic surname] and when they see that name, I think there is . . . some kind of a prejudice of the name. . . . We’re talking about on the phone, there’s a lack of respect. There’s a lack of acknowledging the person and making one feel welcome. All of the courtesies that go with the profession that they are paid to do are kind of put aside. They think they can get away with a lot because “Here’s another dumb Mexican.” (Hispanic participant)

I’ve had both positive and negative experiences. I know the negative one was based on race. It was [with] a previous primary care physician when I discov- ered I had diabetes. He said, “I need to write this prescription for these pills, but you’ll never take them and you’ll come back and tell me you’re still eating pig’s feet and everything. . . . Then why do I still need to write this prescription.” And I’m like, “I don’t eat pig’s feet.” (African-American participant)

My son broke my glasses so I needed to go get a prescription so I could go buy a pair of glasses. I get there and the optometrist was talking to me as if I was like 10 years old. As we were talking, they were saying, “What do you do,” and as soon as they found out what I did [professionally], the whole attitude of this person changed towards me. I don’t know if they come in there thinking, “Oh this poor Indian does not have a clue.” I definitely felt like I was being treated differently. (Native-American participant)

One participant spoke about a relative who did not want to take her husband’s name after marriage for fear of being negatively stereotyped.

My granddaughter, she’s a doctor herself. She graduated in Mexico and then she came here. She [studied here] so she could become a doctor here. She married a Mexican guy named [a common Hispanic surname]. You know what she did? She took off [a common Hispanic surname] and kept [another surname], her father’s name. (Hispanic participant)

Language Barriers

Many participants in the Chinese- and Spanish-speaking focus groups voiced concern about being treated unfairly because of their lack of English-language proficiency. As a result, they perceived that healthcare providers treat them differently and were concerned that they receive lower quality care.

If you speak English well, then an American doctor, they will treat you better. If you speak Chinese and your English is not that good, they would also kind of look down on you. They would [be] kind of prejudiced. (Chinese participant)

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394 UNEQUAL TREATMENT

When they see he can’t explain himself, they look at him as if [they are] belittling him. They treat him with a lot of inferiority… the doctor, nurses, receptionists. You can tell when the person is not liked by the doctors or the staff. I have seen a lot of discrimination in that manner. (Hispanic participant)

I have a desire to improve my English so I can go to an American doctor and get better treatment. (Chinese participant)

Healthcare providers were also concerned about not being able to communicate adequately with their patients because of a language bar- rier. One African-American nurse spoke of “seeing the fear in their eyes” and knowing how upset and frustrated patients were in trying to commu- nicate what was wrong with them. A Hispanic nurse acknowledged the language problem, stating that for “new immigrants that do not speak the language properly . . . it is the biggest obstacle they encounter.”

Non-English-speaking participants, especially those in the Hispanic group, recounted many examples of personal situations in hospitals and other settings where they were forced to deal with serious health condi- tions without the benefit of interpreters or patient healthcare staff willing to assist them. They said they encountered healthcare staff who ignored them and avoided trying to help them. Others pointed out instances where they or their family members have received poor quality healthcare services and have been treated disrespectfully because they speak little or no English.

A long time ago my husband was in pain. I had to call an ambulance and they took him to the hospital. We waited three hours. I would ask the nurse to please treat him because he could not stand the pain. She would say, “We’re going to call him, we’re going to call him.” I saw black people being called in, but they never called him back. I asked for some medication in the meantime. They never came out with the medicine. . . . Well, we left. [My husband] told me it must have been because we are Hispanic and don’t speak English. They would call and call in black people. . . . I think if we would’ve been black or American we would have been treated faster. (Hispanic participant)

[My wife] was treated badly. They wouldn’t take care of her. They were chang- ing her IV and the nurse was very rough in the way she would take the needle out and put it back in. I felt bad. I had to go and tell them with the little English I speak what was happening. So, they changed the nurse. That’s the way it is. All the situations we are experiencing are because we can’t communicate in English. (Hispanic participant)

My son was in a bed and another boy was with his mother. Of course, they didn’t speak English. The lady didn’t know . . . she wanted to know where they were taking the boy. She asked for the girl who was interpreting for her. One of the nurses said, “I don’t know why they send these people here without any- body to interpret for them. We’ll come back later,” and they left . . . but they

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didn’t do anything about finding out where the interpreter was. (Hispanic participant)

I had eye surgery two or three years ago. The specialist was black. There were Hispanics out front. I told them I had an appointment with the doctor. They asked me if I spoke English . . . one said to the other in Spanish, “Go inside with her.” “No, you go.” I asked them who was going to go with me because the doctor was waiting for me. Once we were inside, he would speak [only to the interpreter] directly. I felt rejected. (Hispanic participant)

Five years ago my son got double pneumonia. The doctors wanted to operate [on] him. . . . They called my husband and he said he had to talk with the special- ist who was treating my son to see what he had to say about the surgery. We called . . . and the specialist said my son would not be able to resist that type of surgery. My husband called the hospital and told me not to sign any papers. I didn’t speak English. I didn’t know anything. They put the paper in front of me to sign. They insisted I sign the paper. My husband told me not to sign anything and [that] he was on his way [to pick us up]. In the end my son didn’t have the surgery and he didn’t die like they said he would. Three days after they said he needed the surgery he got better. The surgery was not necessary. (Hispanic participant)

I called a pharmacy to see if my daughter’s medicine was ready and they put me on hold. They put the phone down and said, “She’s a Spanish speaker,” and they put me on hold. She left me waiting a long time until I hung up. (Hispanic participant)

The Role of Economics

Oftentimes, participants noted, a person’s perceived or actual socio- economic status can be an obstacle to obtaining quality healthcare ser- vices. Participants were concerned that they may receive a lower stan- dard of care because healthcare providers make assumptions about the type of treatment or medication that they can afford because they are ra- cial or ethnic minorities.

I know there have been a couple of times the doctor wanted to prescribe a certain medication but because of how much it was, he prescribed some- thing else. Not what was best, but what I could afford. (African-American participant)

Often times, the system gets the concept of black people off the 6 o’clock news, and they treat us all the same way. Here’s a guy coming in here with no insur- ance. He’s low breed. (African-American participant)

A lot of black people don’t have money so I guess you would say that it’s hard [to get quality healthcare.] A lot of black people don’t have any insurance. (African- American participant)

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396 UNEQUAL TREATMENT

Lack of Respect

Many participants unequivocally believed that the lack of respect healthcare providers have for them leads to lower quality healthcare ser- vices than persons of other ethnicities, especially whites, receive. They spoke of instances where the office staff would not “look them in the eye” when they spoke to them or greeted other patients with a more pleasant attitude. Others felt a lack of respect when they were rushed during ap- pointments and sensed that providers or their staff did not want to take the time to help them, answer their questions, or explain medical proce- dures to them.

They wouldn’t accept the appointment over the phone; they just put me on hold. I went in there and she looked at me and I told her I’d been calling trying to make an appointment. She said, “Well, you see this stack of paper, you think you’re the only one?” She either thought I was Mexican or she recognized I was Indian, but she would not make that appointment. She just got smart with me and all. I told my husband about it. He’s big and white. She got to him just like that. No problem. She got the appointment and got him through. She wouldn’t do it for me. (Native-American participant)

I felt that because of my race that I wasn’t serviced as well as a Caucasian person was. The attitude that you would get. Information wasn’t given to me as it would have [been given to] a Caucasian. The attitude made me feel like I was less important. I could come to the desk and they would be real nonchalant and someone of Caucasian color would come behind me and they’d be like, “Hi, how was your day?” (African-American participant)

I don’t have a problem with taking more time to be able to understand each other, but they get really annoyed when you don’t understand them. Basically, they get really annoyed if you talk too much because they know they don’t under- stand your language. When I go to the doctor I ask a lot of questions, so they can get really aggravated with me. I don’t know if they would do the same thing to a white person. (African-American participant)

Others felt they must wait for long periods of time before receiving medications and other medical assistance, while whites are cared for first.

I would call [for the nurse] when I was feeling pretty bad. They wouldn’t come until I finally had to yell, “Help me, I’m in pain! I need something to calm the pain!” They had to call someone and she gave it to me. There were American [patients] there. They would even close the curtains for them. (Hispanic par- ticipant)

If your bell was on and the Caucasian lady, she doesn’t even have to have her bell on. She was being attended to because they knew they better . . . do a certain quality [of service]. Whereas the same quality should have been given to the

Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care

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black people, but their bell would be on and they still would have to wait. (African-American participant)

Improper Diagnosis or Treatment

More troubling are instances that participants mentioned where the quality of medical treatment was compromised by discriminatory atti- tudes or practices that participants believed led to either misdiagnosis or improper treatment.

When I was growing up, my parents didn’t have health insurance. We would go to the Indian Health Service. You’d go there to the clinic and I think sometimes you wonder about the quality of the medical personnel that was examining you. My younger sister had appendicitis. It burst, and they told her she had a stom- ach flu. I don’t know how they were hiring the medical personnel at that time. It’s changed now, but back then I don’t think we had some of the best medical officers or nurses. (Native-American participant)

Being in a group practice seeing predominantly African-American patients, I have patients who have seen mainly white physicians in the past. When they come in to visit with us and speak with us, something as simple as [asking them to] sit up on a table and they got a question. “What are you going to do?” “I’m going to examine you.” “Oh, my other doctor never did that.” (African- American physician)

Of course, in psychiatry we see this [discrimination]. One area we see is in terms of diagnosis. Patients are inappropriately diagnosed and medications prescribed for the patients. We see errors in that. Minority patients will often be diagnosed inappropriately as being schizophrenic. (African-American physician)

When I ask [my Hispanic patients] if the other doctor ever examines you, they say, “No, they give me a prescription.” It’s amazing. A lot of times these patients have these problems that are missed by the other doctors. (Hispanic physician)

In some instances, participants noted, racial and ethnic minority pa- tients have difficulties gaining access to the specialists they need. One physician noted that specialists mistreat racial and ethnic minority pa- tients to avoid having to provide treatment for them.

I’m in private practice and we refer a lot. We kind of know what specialists to avoid because we hear the patients coming back and telling about what type of treatment they’re getting from these specialists. A lot of the specialists in these institutions act like they don’t want to see the minority patient at all. When the minority patient ends up there maybe because they’re on [a particular] plan… they are mistreated. (African-American physician)

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398 UNEQUAL TREATMENT

In contrast to situations described by participants in which healthcare providers sought to limit their access to healthcare services, two female participants described being pressured to have surgical procedures that, in retrospect, were deemed unnecessary by other doctors.

The first thing they wanted to do was a hysterectomy. I was 36 years old and they never really examined me. I was just telling them the symptoms and it scared me and I left. . . . I guess they were trying to stop the population birth, whatever, because [the hospital] back then was for people who didn’t have insur- ance. (African-American participant)

My Ob-Gyn is Caucasian. I have fibroid tumors and the doctor I’ve been going to, he’s been my Ob-Gyn for 14 years and for the last 2 years he told me I have to have this hysterectomy. I had a girlfriend at the office recommend me to a female African-American physician. . . . A week later she called me at home and said to me, “There’s nothing wrong with you. The fibroid is there but if it’s not bothering you, if it’s not broke, don’t fix it. You don’t need to have a hysterec- tomy.” (African-American participant)

To overcome discriminatory attitudes from healthcare providers, one participant suggested that it is necessary for minorities to be “strong” and not “humble in your voice and tone” to have a better chance at getting the care they wanted.

I believe that African Americans do get a lower quality of care. I think if you’re educated, if somebody’s not treating you right then you kind of push past some of the stuff, but for somebody that doesn’t have a good feeling about themselves, whether it’s because of race or literacy, that makes it very hard for them to get the care that they need. (African-American nurse)

CHALLENGE OF IDENTIFYING RACIAL AND ETHNIC DISCRIMINATION

Some participants found it difficult to identify obvious examples of discrimination they encountered in their healthcare experiences, although they were certain that discrimination exists in healthcare settings. As one African American participant aptly described, “It’s hard to identify dis- crimination because they don’t show it. They’ll be sweet and smooth, all the way through it.” Participants mentioned experiencing discrimination in many situations, but because of the subtleties often inherent in dis- crimination, it was challenging to identify overt examples. They often said, “You just know,” or “You can feel it” when describing incidences of discrimination.

Overall, participants felt that racial discrimination could not easily be separated from other forms of discrimination. The quotes that appear in the following section illustrate participants’ concerns about not receiving

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appropriate healthcare services, but they also show that the link between one’s race or ethnicity and poor treatment can be very complex. While the underlying issues (e.g., economics, improper diagnosis) mentioned here parallel those discussed in an earlier section, the claims made in the fol- lowing quotes only suggest that a lower quality of healthcare stems from racial or ethnic discrimination. The evidence for this causal relationship tends to be circumstantial.

Patients’ Appearance

Some participants hinted that attention to appearance, (e.g., being well-dressed) might counteract discriminatory tendencies. One Hispanic participant said he felt it was important to “be presentable,” otherwise the healthcare staff would likely make him wait for hours before helping him. Another said:

I’ve noticed that, outward appearance has a lot to do with the rapport that you have with your provider. They talk to you a little different, they treat you a bit differently. You can walk in, you’re all battered and crummy looking, and their whole personality changes. You walk in looking half-way decent, and they’re very pleasant, and they react and act completely different. (African-American participant)

Patients’ Economic/Insurance Status

Some participants provided examples of how they or their family members received poor healthcare services because of their lack of insur- ance or perceived inability to pay for these services. They believed that they were being treated differently by the healthcare system, although they did not make a direct link to race or ethnicity.

I went back [to IHS] after I found out everything that needed to be done. I went back to the clinic and chewed out the doctor. Then she said, “Wait a minute. Wait a minute. Do you realize how much it’s going to cost you? It’s like buying a new car.” I said “I don’t care at this point. It’s my life. I don’t care how much money I have to pay out of my pocket.” Then she says, “Wait a minute. Let’s send you to a specialist.” I said, “Why didn’t you tell me this to begin with? Now that I’m making my move, now you’re telling me, OK, now you can do this and that for me?” I said, “No thank you. This is it.” (Native-American participant)

My niece went to this hospital and they wouldn’t wait on her because she didn’t have insurance. They told her she would have to go to the county hos- pital. So I had to take her to the county hospital. She was bleeding all the way. It was just terrible, because she didn’t have insurance. (African-American participant)

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400 UNEQUAL TREATMENT

It’s almost like “Oh well, this person doesn’t have insurance. Let’s just give them the IHS treatment.” (Native-American participant)

I have a son and he’s considered disabled. He had MediCal before. I got it before I got insurance through my job, and I had to wait 100 days before I got the insurance through my job. So I noticed there’s a longer waiting period… other people are coming in after me and have later appointments, but they have private insurance, so they’re seen before me and my son. And it wasn’t just the waiting period; the treatment was different. Now that I have private insurance, as soon as I get there, [they see me]. (Hispanic participant)

An Ob/Gyn who had a large Medicaid population, not just black and Hispanic, but a large Medicaid population . . . they told the doctor they wanted him to have more deliveries at other hospitals. [He refused.] The hospital then, at that point, decided they would stop taking all Medicaid period because this doctor would not leave. For an entire year this hospital wouldn’t pay Medicaid just so this doctor wouldn’t deliver there anymore. (African-American physician)

Healthcare Setting

Native Americans, because of their unique access to healthcare through the Indian Health Service (IHS), spoke often about the poor quality of care at the IHS clinics. More than participants in the other groups, they defined their ability to get quality healthcare services by the setting in which they received care and not by their race. They did not blame poor healthcare on individual providers as much as they did on the IHS system.

If you go into IHS for a problem, they don’t investigate your problem to the extent that a private place does. [Private offices] go through everything like an ultrasound, blood work, the whole nine yards, and they pinpoint the problem. IHS, they give you a temporary solution or shot and it comes back up a month later. (Native-American participant)

I think the way that race plays into it is because we all go to the Indian Health Service because we’re Indian. That’s where we start out with our healthcare. (Native-American participant)

I’ve had experiences where I had no choice but to go to the Indian Health Service. You go in there, they rush through you. They misdiagnosed several things with me, and you’re just rushed through. I’ve dealt with accidents, and to get your accidents paid for and stuff, IHS takes forever to get those reports through. It took like 2 years, and that’s a very long time. I don’t know where they get that, but I don’t think that’s right. (Native-American participant)

Attitude of Healthcare Providers

Some participants were surprised and disappointed by the uncaring attitude exhibited by some of their healthcare providers or administrative

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staff. In some cases, they felt staff were unwilling to help them, and infor- mation about their health was delayed or not provided to them. In other situations, doctors seemed more interested in insurance payment issues and less concerned with providing appropriate care for their patients.

The doctor comes in and says, “Why is he on oxygen?” I was recovering from surgery. He’s looking at the chart and he says, “The insurance doesn’t cover it. Take it off.” Just like that. I’m right there, and I’m thinking “Wow, that’s pretty harsh if it comes from a doctor.” That was unfair I thought. (Hispanic participant)

First of all, they didn’t send me back the results for 5-6 months. I can’t get an answer on the phone when I call. I have to call like 10 times and they put me on hold and say they&#x

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