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Racial Disparity in Cardiac Decision Making
Results From Patient Focus Groups
Jeffrey A. Ferguson, MD, MPH;
Morris Weinberger, PhD;
Glenda R. Westmoreland, MD, MPH;
Lorrie A. Mamlin, MPH;
Douglas S. Segar, MD;
James Y. Greene, PhD;
Douglas K. Martin, MD;
William M. Tierney, MD
Arch Intern Med. 1998;158:1450-1453.
ABSTRACT
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Background While numerous studies suggest that African Americans receive fewer invasive cardiac procedures than whites, the basis for these treatment differences is not understood.
Methods We conducted focus group sessions with patients who had received treatment in the hospital or the emergency department within the preceding 3 months for ischemic heart disease at 2 urban, university-affiliated hospitals.
Results Discussions with patients identified the following factors that influenced their decision making: clarity, simplicity, and consistency of treatment recommendations; advice from friends and family about whether to accept recommendations; availability to speak with others who accepted similar recommendations; and having honest and caring physicians. African American patients identified the following additional factors that influenced their decision making: perceptions of health care discrimination; perceptions of undesirable physician behavior; faith in God to control one's destiny; and patient-physician camaraderie.
Conclusions Participants identified common issues influencing health care decision making, regardless of race. However, additional factors were expressed only by African American participants. These factors conveyed racial differences in perceptions of the health care system that may, in part, contribute to differences in health care decision making and treatment.
INTRODUCTION
CARDIOVASCULAR disease remains the leading cause of death for African Americans and whites in the United States despite technological advances in its management.1 For many patients in whom conservative management is unsuccessful, optimal treatment requires use of invasive cardiac procedures: cardiac catheterization, percutaneous transluminal coronary angioplasty, or coronary artery bypass graft surgery. While numerous studies, including one conducted at our institution, suggest that African Americans receive fewer of these procedures than their white counterparts,2-12 the basis for these observed interracial treatment differences is not understood.
One possible explanation for these treatment differences could be a systematic racial difference in patients' attitudes and beliefs regarding the health care system and their corresponding preferences for care. This possibility is supported by a previous study demonstrating that African Americans were more likely to refuse recommended coronary artery bypass graft procedures.4 Investigators at this institution also have documented higher rates of cardiac procedure refusals among African Americans,13 and a recently published survey has implicated patient preferences for care as a determinant of racially discrepant cardiac procedure use.14
Qualitative research has also been used to identify and understand patients' perspectives regarding the pathogenesis and treatment of disease.15-20 One such methodology, the use of focus groups, facilitates the noncoercive expression of perceptions and beliefs about a topic without requiring voting, planning, or consensus agreement among participants.21-23 To extend research in interracial cardiac care, we conducted focus groups among African American and white patients to identify factors that influenced their cardiac treatment decisions. Our goals in this study were (1) to identify factors that contributed to patient decision making in ischemic heart disease and (2) to examine whether racial groups differed with regard to these decision-making factors.
PATIENTS AND METHODS
STUDY SITES
The study was conducted at 2 urban, university-affiliated hospitals: the Roudebush Veterans Affairs Medical Center and Wishard Memorial Hospital, Indianapolis, Ind. At both institutions, medical care is provided by faculty, fellows, and housestaff from the Indiana University School of Medicine, Indianapolis.
PROCEDURES
We assembled patients who had been treated in the hospital or emergency department within the preceding 3 months for suspected or confirmed ischemic heart disease. Of the hospitalized patients, those who had primary discharge diagnoses (International Classification of Diseases, Ninth Revision [ICD-9]24 codes) of myocardial infarction (410-410.92), unstable angina (411-411.89), chronic ischemic heart disease (414.0-414.8, 414.9), or angina (413-413.9) were invited to participate in our study. Of the patients who were evaluated in the emergency department, those who had disposition diagnoses of angina, chest pain, coronary artery disease, palpitation, or atypical chest pain were invited to participate. Research assistants sent each eligible patient a letter signed by 1 of the study physicians and during a subsequent telephone call described the study and invited the patient to participate in the focus groups. Consenting patients received $25 and were served light refreshments for their participation. To foster active participation and to encourage frank discussions among the participants, the composition of each focus group was structured to be homogeneous with regard to hospital (Roudebush Veterans Affairs Medical Center or Wishard Memorial Hospital), sex, race, and encounter site (hospitalization or emergency department visit). The participants were informed at the beginning of each session that there were no right or wrong responses to any of the questions and that their honest opinions were our main interest. They were also assured that their statements would be held in strict confidentiality and would not influence their future health care.
Conversation guides were scripted and developed by 1 of the authors (J.Y.G.), a medical anthropologist with extensive experience using this methodology. The same conversation guide was used to query all focus group participants regarding their general perceptions of health care and their recent encounter with the health care system, including information they received from their physicians, how they contemplated treatment options, with whom they discussed these options, and any other factors that may have influenced their decision making. Focus group facilitators were oriented to the purpose of the study and trained in the use of the conversation guide. To encourage open discussion among participants, we chose facilitators who were non–health care professionals and who were similar in race and sex to the focus group participants. These facilitators were trained to encourage all group members to participate and to use open-ended questions. Each participant was allowed to answer every question as fully as he or she desired before the facilitator moved to the next question. Facilitators did not lead discussions in the direction of racial issues; instead, the discussions were allowed to evolve as initiated by the participants.
All focus group sessions were audiotaped and transcribed verbatim, and the transcripts were reviewed by the study investigators to identify factors mentioned within each focus group. The transcripts were reviewed by 3 general internists (J.A.F., G.R.W., and W.M.T.), a cardiologist (D.S.S.), a medical sociologist (M.W.), and a biostatistician (L.A.M.). Each rater, blinded to focus group composition, created a list of factors mentioned by patients regarding cardiovascular decision making. These factors were then aggregated into 3 major categories: health care system factors, personal factors, and physician factors. Phrases and quotes offered by participants are provided as illustration of the factors that emerged during the focus group discussions. Since our primary interest was identifying racial group differences, we aggregated factors by race regardless of other group characteristics (eg, sex, hospital, and encounter site). However, where possible, we also attempted to determine whether the presence of other group characteristics was associated with identified decision-making factors.
RESULTS
A total of 334 patients were invited to participate, and 101 (30%) agreed to participate in 15 focus groups. African American and white participation rates were identical, while veterans were more likely to participate than their community hospital counterparts, 54% vs 31%, respectively. Fifty-eight participants were white, 64 were male, 53 had hospitalization as their encounter sites, and 66 received their care at Wishard Memorial Hospital (Table 1).
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Focus Group Participants*
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HEALTH CARE SYSTEM FACTORS
White Participants
Focus group members felt that the health care system was very complex and confusing. Specifically, participants were overwhelmed by the number of physicians involved with their care, as exemplified by the following statements: "We see too many doctors . . . each of them tells you different things . . . [I] should have just 1 or 2 main doctors." Also, participants said that the medical information presented to them was often difficult to assimilate and summarize: "I don't think anyone explained my condition to me very well." Another stated, "I'm not a doctor. I need simple explanations."
African American Participants
Many of the comments made by members of the African American focus groups were similar to those made by members of the white focus groups, such as comments regarding the perceived excess number of physicians involved in their care and the difficulty in understanding medical terminology: "I had too many doctors." "I want to get care only from my primary physician." "I am frustrated when I don't get answers [I can] understand."
However, other factors were mentioned only by African Americans. African Americans voiced a mistrust of, and disdain for, the health care system: "People with insurance were seen before me." "I think that questions about finances and [insurance] coverage lead to discrimination and preferential treatment." "If you don't have insurance, you're treated differently." Other participants questioned the motives and behaviors of physicians: "I have come to the hospital and gotten treated like dirt." "Doctors belong to a clan, and if you're in you can act as you choose." "I had a doctor who was prejudiced." "Some doctors don't want to touch you because of the color of your skin." "Doctors today seem to be in it for the money." "Doctors should be honest with you, but most of them aren't." Others questioned the validity and purpose of medical practices: "I think doctors are just guessing and giving their opinions, you know, like the weather." "I had a test once before. It was an experiment." Another stated, "I don't want to come here and be a guinea pig." Statements regarding potential discrimination and experimentation were more representative of African American men than of African American women but were stated by African American patients from both hospitals and both encounter sites.
PERSONAL FACTORS
White Participants
In general, white participants stated that making a treatment decision was difficult and ultimately depended on several personal factors. Patients often sought the counsel of family members for advice: "I talked it over with family." "I asked my wife." Others felt that if sufficient information were presented to them, they would be capable of making the decision by themselves: "I want to make the decision myself, whether or not I want something done." "I make up my own mind." Many felt that a second opinion from a physician was helpful before agreeing to undergo a major procedure or surgery: "I always want a second opinion before accepting treatment." Others felt that speaking with someone who had undergone the procedure provided necessary additional information: "I talked to the guy next to me. He had the procedure himself. He told me all I needed to know about the procedure." Finally, others felt that the seriousness of the illness dictated decision making: "When you're sick and you know it, you take the doctors' advice. What choice do you have?" Another stated, "I said ‘Do whatever you have to do. Let's find out what's wrong and correct it.'"
African American Participants
Similar statements were made regarding the role of family and additional medical opinion in the decision-making process: "I talked to my family." "I spoke with my family members and took time to decide." "I talk it over with my family but I usually do what the doctor recommends." "I always ask for a second opinion." However, additional comments were offered by African Americans regarding the importance of religious faith and trust in God in the final health care decision: "I can't immediately answer the doctor. I need to pray about it and feel at peace (before reaching a decision)." Another stated, "I was told I had a problem with my heart. I didn't take it seriously because I trust my health to God." Statements regarding the influence of religion were more representative of African American women than of African American men but did not differ among encounter sites. Since there were no female veteran focus groups, we cannot address the influence of hospital site.
PHYSICIAN FACTORS
White Participants
White participants were able to identify characteristics that they would like their physicians to possess: "I want one [a physician] who cares about me." "I get mad at doctors who are uncaring." "I like a doctor who takes time with each person, as an individual." "I prefer a doctor who listens to me before talking to me." "I like to see confidence in my doctor." "I have to understand my doctor, particularly one who speaks English."
African American Participants
African American participants reiterated preferences in physician attributes with emphasis placed on honesty and personal attention: "I want a doctor who is sympathetic, caring, and interested in people." "I want a truthful, concerned doctor who takes time with each patient." "I want a doctor who is friendly, honest, and explains things well." However, African Americans placed additional importance on patient-physician camaraderie: "I want someone who is in my corner." "I want to be talked to, not about." "I want someone who listens to me and treats me as an individual." "I want someone who realizes that I know my feelings better than you do." "I want someone who gives an individual credit for knowing their own body." These statements were consistent across sex, hospital, and encounter sites.
COMMENT
We conducted focus groups among African American and white patients with ischemic heart disease to identify factors that might account for racial differences in the use of cardiac procedures. We found that participants discussed common issues regarding health care decision making, regardless of race. These themes included the desirability of clear, concise recommendations emanating from 1 or 2 physicians. Patients wanted to hear explanations and advice in simple terms. Patients often consulted the opinions of family and friends, and some sought the advice of an additional physician. Patients felt that, if possible, discussing procedure recommendations with someone who had undergone the procedure was helpful. Patients felt that the ideal physician was one who was kind, honest, and caring. Finally, patients emphasized the desire for their physicians to possess effective communication skills.
However, we also identified factors that were expressed only by African American participants. These factors addressed issues related to perceptions of racial and financial discrimination within the health care system, perceptions of undesirable physician behavior, overriding faith in God to control one's destiny, and the expressed need to have a physician who is in touch with their symptoms and complaints. Together, these factors provide additional information in understanding racial differences in health care decision making and complement results of previous research. Whittle et al14 found that African Americans were less likely to choose revascularization procedures when presented with identical hypothetical scenarios. Brooks25 published findings indicating that African Americans are often dissatisfied with outpatient care, in part because of poor physician-patient communication, physician use of technical language, absence of physician warmth and friendliness, and distrust of whites.
Our study has important limitations. First, we cannot discern cause-and-effect relationships between participants' health care perceptions and their medical treatments. That is, were African Americans' negative health care perceptions a result of treatment differences, or were differences in care a result of a hesitancy to undergo additional therapies? Furthermore, we did not review medical records to ascertain health care use or treatments offered to study participants. Second, our data are qualitative. We did not ask participants to rank the relative importance of factors; therefore, we cannot ascribe a hierarchical ordering for, nor can we speculate on, the quantitative impact of these factors on actual decisions. Third, our study was conducted among veterans and inner-city patients at a single medical center. Opinions expressed by study participants may not accurately represent the viewpoints of patients in other settings or health care communities. However, our study population is likely to be representative of patients of lower socioeconomic status who have been shown to receive discrepant cardiac care.2, 4, 7-8,12-14 Fourth, while we made every attempt to blind the transcript reviewers to a focus group's race, we cannot determine whether reviewers could identify the racial composition of a particular transcript through recognition of phrases and expressions. Finally, we do not know whether other raters would have identified different factors from our transcripts, although we attempted to control for this possibility by having multiple raters review each transcript.
Despite these limitations, we believe that our study provides an intriguing window through which to view differences in racial health care decision making. The decision to undergo an invasive cardiac procedure requires trust and confidence that the right person is doing the right thing at the right time. African American participants in our focus groups often indicated that they did not have such confidence in their physicians or in the health care system. Racially disparate medical care is a complex issue deserving of our fullest attention; however, solutions will not be quick, simple, or easy. Before we can reduce disparities in racial clinical management, at least 2 fundamental principles of patient care must be targeted for improvement. First, medical education and health care training programs must focus on the importance of provider communication as it relates to patient decision making, particularly among minority populations. Clinicians must understand that treatment recommendations may be interpreted and judged differently by patients of varying race and ethnicity. Also, health care professionals must be aware of, and strive to eliminate, the negative influence of verbal and nonverbal expression of biases that they project when interacting with patients.
AUTHOR INFORMATION
Accepted for publication December 3, 1997.
This study was funded by grant SDR 94-009 from the Health Services Research and Development Service, Department of Veterans Affairs.
Presented as an abstract at the 19th annual meeting of the Society of General Internal Medicine, Washington, DC, May 4, 1996.
Reprints: Jeffrey A. Ferguson, MD, MPH, Roudebush Veterans Affairs Medical Center, Health Services Research and Development (11H), 1481 W 10th St, Indianapolis, IN 46202.
From the Center for Health Services Research, Roudebush Veterans Affairs Medical Center (Drs Ferguson, Weinberger, Martin, and Tierney and Ms Mamlin), the Divisions of General Internal Medicine (Drs Ferguson, Weinberger, Westmoreland, Martin, and Tierney and Ms Mamlin) and Cardiology (Dr Segar), and the Department of Medicine (Dr Greene), Indiana University School of Medicine, and Regenstrief Institute for Health Care (Drs Weinberger, Westmoreland, and Tierney), Indianapolis, Ind.
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