Shaping Professionalism:

Race, Trust, and Tuskegee: Professional Ethics, Broken Trust and Health Disparities
Prepared and presented by Marc Imhotep Cray, M.D.

Based upon data provided by the AMA Race, Trust Speakers Kit
The information presented in these slides and the companion notes, from which this presentation was created, are meant to serve as a continuation of the dissemination of evidence-based information on Physician Ethics, Trust, and Health Disparities.
This presentation is a part of the IVMS Sharping Professionalism Learning | Teaching Series

Goals of this Presentation

To demonstrate/document racial disparities in health care exist To show how trust is important to good health outcomes

To explain why African Americans tend to mistrust the medical profession (and this mistrust is not unfounded) To emphasize why the medical profession needs to demonstrate its trustworthiness. Some initial ideas...
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Disparities Across Health Care

Disparities have been recognized among various minority groups, but are best documented among African Americans Adjusted for disease severity and socioeconomic status, African Americans experience:
Fewer referrals for renal transplant evaluation and fewer transplants (Ayanian 99, Epstein 00) Less adequate pain medication for cancer (Cleeland 97) Inferior HIV Care (Moore 94, Shapiro 99) Fewer admissions to CCU and fewer revascularization procedures, especially CABG (Ayanian 93, Peterson 97,
Schneider 01)

Fewer eye examinations in DM, B-blockers after MI, and follow-up after hosp. for mental illness (Schneider 02)
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Due to Coverage?
Schneider et al. (2001,2002) found that among Medicare recipients in managed care health plans, African Americans were less likely than whites to receive:

Breast cancer screenings 62.9% vs. 70.9% (P<.001) Eye examinations for diabetes patients 43.6% vs. 50.4% (P=.02) -blocker medication after myocardial infarction 64.1% vs. 73.8% (P<.005) Follow-up after hospitalization for mental illness 33.2% vs. 54.0% (P<.001) Influenza vaccinations 46.1% vs. 67.7% (AD 21.6%; 95% CI 18.2% to 25.0%)

Transplantation Disparities
Median Waiting Time (in Months) to Kidney Transplant By Race

Year
1988
1989 1990 1991 1992 1993 1994

Black Recipients
20.1
21.4 24.9 26.7 29.8 34.9 39.7

White Recipients
11.3
12.7 13.3 14.1 16.0 18.7 20.1

Difference
8.8
8.7 11.6 13.7 13.8 16.2 19.6

Source of Data for 1998 HHS OIG Report: Organ Procurement and Transplantation Network (OPTN), 1997 OPTN/SR AR 1988-1996. UNOS; DOT/HRSA/DHHS. 5

Who You Are Influences What You Think

Do you think the average African American is better off, worse off, or just as well off as the average white American in terms of access to health care? Worse Off: White Americans 35% African Americans 61% How much discrimination do African Americans face in our society today? A Lot: White Americans 20% African Americans 48% Do you feel that African Americans have more, less, or about the same opportunities in life as white Americans have? Less Opportunities: White Americans 27% African Americans 74% 74%

The Washington Post, the Henry J. Kaiser Family Foundation and Harvard University Racial Attitudes Survey (April 2001)

Unfair Treatment
25% of White physicians 29% of Physicians overall 33% of Asian physicians 52% of Latino physicians 77% of African American physicians

believe that the health care system treats people unfairly based on their racial or ethnic background very or somewhat often.
The Kaiser Family Foundation National Survey of Physicians (March 2002)
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Views on Health Disparities

Doctors say the health care system treats people unfairly very often or somewhat often based on health insurance status (72%) more than any other factor.
The Kaiser Family Foundation National Survey of Physicians (March 2002)

Most whites (70%-76%) believe that African Americans and Latinos receive the same quality of care as they do.

68% of whites, 75% of Latinos, 80% of African Americans say racism is a problem in health care
56% of Latinos, 64% of African Americans believe they receive lower quality health care than whites
Results of a Kaiser Family Foundation survey conducted in 1999 of 3,884 whites, 8 African Americans, and Latinos. (Lillie-Blanton et al. 2000)

Fueling Disparities
Patient-Level Variables Patient preferences, mistrust, comfort level Seeking treatment (or not) Adherence to treatment (or not) Effectiveness of treatment Healthcare Systems-Level Factors Language barriers Availability and access to health care Ability to navigate clinical bureaucracies Lack of insurance, differences in insurance Managed care limitations Care Process-Level Variables Bias, prejudice, stereotyping, clinical uncertainty Decisions made with limited time and information Effect of patient response on physician
Institute of Medicine Report (2002) Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care 9

Importance of Trust
Intrinsic value of trust in the Patient-Physician Relationship

The physician-patient relationship often reflects [intimate bonds] and contains strong elements of transference, particularly during times of critical illness when patients are vulnerable and frightened. (Mechanic 1996)
Instrumental Value of Trust in Health Care Trust predicts a patients loyalty to their physician. (Thom 1999, Safran 2001, Keating 2002)

Higher levels of trust between patients and their physicians are correlated with positive health outcomes. (Thom 1999, Safran 1998)

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Declining Trust
Eroding trust means that the health care system must work to maintain not only trust in physicians, but trust in the health care system overall. Harris and Associates Poll (1998) USA Today/CNN/Gallup Poll (2002)

Teachers Clergymen or priests Doctors Scientists Judges Professors Police officers Ordinary man or woman (The) President Business leaders Members of Congress Journalists Trade union leaders

86% 85% 83% 79% 79% 77% 75% 71% 54% 49% 46% 43% 37%

Teachers Military officers Police officers Protestant ministers Doctors Catholic priests Government officials Lawyers CEOs of large corporations Managers of HMOs

84% 73% 71% 68% 66% 45% 26% 25% 23% 20%

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Links to Health Outcomes

Decreased trust has been associated with:

Lower patient and physician satisfaction Increased disenrollment Increased demand by patients for referrals and diagnostic tests Poorer patient adherence to treatment recommendations Increased litigation Possibly lower health status
Thom and Campbell 1997, Safran et al. 1998

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Trust and Patient Satisfaction

Patients with 95th percentile trust scores were about 5 times more likely than those with median levels of trust to express complete satisfaction with their physician. (Safran et al. 1998) Thom et al. (1999) found trust to be a significant predictor of patients satisfaction with care received from their physician.

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Mediator of the Placebo Effect?

Trust may have therapeutic value, enhancing the efficacy of prescribed treatment. (Faden and
Beauchamp, in Goold 2002)

Trust:

Trust is important in reducing anxiety, increasing a patients sense of being cared for, which in turn may improve the patients sense of well-being and improve functioning. (Thom and Campbell 1997)

Side query: What might be the economic cost of losing the placebo effect?
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Trust May Be Fragile

Trust is easy to break Trust is particularly fragile because negative events are more visible, they carry greater psychological weight, they are perceived as more credible. (Slovac in
Mechanic 1996)

Trust can be disconfirmed at any time. Although patients discount small lapses because they appreciate that doctors, like others, can have good and bad days, a serious failure to be responsive when needed can shatter even the strongest of relationships. (Mechanic 1996)

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Trust: Interpersonal Institutional

Trust in the medical profession can be: Interpersonal: Patients trusting their physicians, health care professionals. Institutional: Patients trusting their hospital, clinic, or the medical profession.
(Mechanic and Schlesinger 1996)

Interpersonal and Institutional trust are related: Beginning a relationship with a new physician requires some level of institutional trust. Institutional trust can be cultivated by building on existing trust between patients and physicians.
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American Minorities Have Less Trust

Interpersonal Trust Whites generally have higher levels of trust in their physicians (Kao 1998) Trust scores are especially low for Latino and African American men (Doescher 2000) When asked if they trust their primary nephrologists' judgment about their medical care African Americans responded somewhat or not at all more often than whites (men 22% vs. 12%, women 24% Vs 11%). (Ayanian 1999) Still, most patients trust their own physician a great deal.
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Less Institutional Trust

Major Differences
African American men and women are less trusting of hospitals. (Boulware 2002) African Americans are less trusting of the reasons physicians use or withdraw life sustaining therapies.
(Hauser 1997, Blackhall 1999)

African Americans are less trusting of the organ donation system. (Yuen 1998, Siminoff 1999) African Americans have less trust in the health care system in general. (Gamble 1997, Freedman 1998, Minniefield 2001) African Americans have profound mistrust of medical research. (Freedman 1998, Freimuth 2001, Shavers 2001, CorbieSmith 1999 and 2002)
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Trust vs. Trustworthiness

Physicians should be concerned with demonstrating that they are trustworthy; the trust of patients will follow. There is a difference between a physician who is trusted and one who is trustworthy. Patients are often the most vulnerable when they are most in need of health care services, and granting too much trust to a physician can limit their ability to discern what is in their own best interest. Unquestioned trust in clinicians may discourage or hinder patients from acting autonomously and taking an active role in their own health care. (Waterman in Anderson and Dedrick 1990)
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Extreme Mistrust
The government introduced drugs into African American communities.

AIDS/HIV is a man made form of genocide.

African Americans are used as guinea pigs in medical experiments.

Physicians withdraw life-support to African Americans for financial/racial reasons over medical reasons.
Gamble 1997, Freedman 1998, Freimuth 2001

The Tuskegee Study (USPHS Study of Untreated Syphilis in the Negro Male) involved deliberate infection with Syphilis.
(Gamble 1997, Freimuth 2001)
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Guinea Pigs & Unethical Tests

They always use our race as guinea pigs. (Corbie-Smith 1999) They treat us like guinea pigs. They are trying stuff out on us stuff they learned in school. (Corbie-Smith 1999) We have always had a concern about what white people have done to black people. Doing things without consent. These are the things that make us back off even more. As black people we become the guinea pig for white people. It is as simple as that. (Freedman 1998) Guinea Pigs. I have a strong belief that syphilis and AIDS originated from a laboratory experiment. Thats what they used people for. (Freimuth et al. 2001)

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HIV & Genocide

The AIDS virus was deliberately created in a laboratory in order to infect black people. (NY Times/WCBS Poll 1990) Believed to be true by 10% of African Americans Believed might be true by another 20% AZT is a plot to poison African American people. Urging condom use is a scheme to prevent African American births. Distributing clean needles is designed to encourage drug abuse. Well, this is just my opinion. The population is growing. People are dying at slower rates. So they said, lets see what happens if we infect this (HIV) out there. (Corbie-Smith 1999) I think [experimentation on Blacks] is still going on now. Like AIDS, it was man-made but it kind of got out of hand. (Freimuth 2001)
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Views Reflect a History

These opinions did not arise from nowhere... Slavery, sharecropping, peonage, lynching, Jim Crow laws, disfranchisement, residential segregation, and job discrimination formed the substance to which many Black Americans reduced all American history, forming a saga of hatred, exploitation, and abuse. (Jones 1991)

For many blacks, the Tuskegee Study became a symbol of their mistreatment by the medical establishment, a metaphor for deceit, conspiracy, malpractice, and neglect, if not outright racial genocide. (Jones 1991) 81% know something about the USPHS Study at Tuskegee (Shavers 2001)
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A Study of Untreated Syphilis:

A Failure of Professional Ethics
Begun in 1932, continued until 1972. Approximately 400 African American men in Alabama with Syphilis were observed to autopsy. Most received some ineffective treatment(s), but no reliable treatments were given, including after Penicillin was in widespread use in the 1950s. Patients were not told of their diagnosis, but were told they would receive free care and a burial stipend. Patients remained infectious, underwent lumbar punctures and other invasive testing. May 16, 1997, President Clinton apologizes on behalf of the US Government. (Reverby 2000)
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Untreated Syphilis
It was difficult to hold the interest of the group of Negroes in Macon County unless some treatment was given Dr. R. Vonderlehr, 1968. (Brandt 1978) In interviews with four survivors: (Department of Health, Education
and Welfare, 1973 - in Reverby 2000)

All remembered receiving shots, ointments, pills, or medicines.

The USPHS ensured that the subjects did not receive treatment from other sources. (Brandt 1978)
While the men did not get treated for syphilis, they did get good medical carecare they would not have received otherwise because of their socioeconomic status. (As perceived
by Nurse Rivers in Hammonds, 1994)
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Contemporary Experience
The legacy of the Tuskegee Study endures, in part, because the racism and disrespect for black lives that it entailed mirror black peoples contemporary experiences with medicine. (Blendon et al
1995)

Negative experiences cited by African American and Latino focus groups (Thom and Campbell 1997)
lack of respect lack of privacy deaths of friends or relatives due to what was perceived to be poor medical care

Minorities report more communication problems with physicians

(Commonwealth Fund, 2002)

African American patients rate their visits with physicians as less participatory than whites. (Cooper-Patrick et al. 1999)

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Building Trust is the Professions Responsibility

Trust confers health benefits

Minorities mistrust the profession

There are reasons, both historic and contemporary for this mistrust, which reflect failures of professional ethics To reduce health disparities and improve outcomes, the profession must build trust among minority populations

How can the profession build trust that has been breached?
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Individual Physicians Can...

Thoroughly Evaluate Problems Understand the Patients Individual Experience Express Caring Provide Appropriate and Effective Treatment Communicate Clearly and Completely Build a Partnership Demonstrate Honesty and Respect for the Patient Address Structural/Staffing Factors
Thom and Campbell 1997
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The End
Special thanks to the AMA for providing the kit that made this presentational possible
Bibliography and Reading List (Word, 33KB)

Credits: This information was originally presented, in part, by Dr. Matthew Wynia MD, MPH at a June 2002 meeting of the American Medical Association's Medical Student Section. The meeting was hosted by the AMA Minority Affairs Consortium. Development of the ideas contained within this presentation was done in collaboration with Dr. Elizabeth Jacobs, MD in preparation for a paper on the relationship between physician professionalism, patient trust, medical ethics, and health disparities.
See: National Institutes of Health Presentation to Council of Public Representatives (PPT, 92.5KB) 24 Pages, focus on Race, Trust and Health Research

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Learn More from AMA resources:

Increasing trust and decreasing health disparities
The AMA's Ethics Standards Group is committed to helping eliminate racial and ethnic health disparities. We focus on academic research and training programs to help increase awareness and improve understanding of issues related to ethics and health disparities, as well as providing resources for others working on these issues.

Eliminating Health Disparities Patient-centered communication Ethical Force Program initiative to develop tools for assessment and learning Focus area: trust A physician's professional responsibility, patient trust, and racial/ethnic disparities in healthcare. Race, trust speakers kit Race, trust, and tuskegee: Professional ethics, broken trust and health disparities Trust and disparities teaching resources Films, books and articles to be used for teaching about ethics and health disparities. What you can do Ways you can take action to address health disparities.
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