ivms race trust and tuskegee-medical ethics broken trust and health disparities

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IVMS Race Trust and Tuskegee-Medical Ethics Broken Trust and Health Disparities

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Page 2: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

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...2

Page 3: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

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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Page 4: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

Due to Coverage?

• Breast cancer screenings 62.9% vs. 70.9% (P<.001)

• Eye examinations for diabetes patients43.6% 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%)

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Schneider et al. (2001,2002) found that among Medicare recipients in managed care health plans, African Americans were less likely than whites to receive:

Page 5: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

Transplantation

Disparities

5

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

Source of Data for 1998 HHS OIG Report: Organ Procurement and Transplantation Network (OPTN), 1997

OPTN/SR AR 1988-1996. UNOS; DOT/HRSA/DHHS.

Year Black Recipients White Recipients Difference

8.8

8.7

11.6

13.7

13.8

16.2

19.6

11.3

12.7

13.3

14.1

16.0

18.7

20.1

20.1

21.4

24.9

26.7

29.8

34.9

39.7

1988

1989

1990

1991

1992

1993

1994

Page 6: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

Who You Are Influences

What You Think

6The Washington Post, the Henry J. Kaiser Family Foundation and Harvard University Racial Attitudes Survey (April 2001)

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%

Page 7: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

Unfair Treatment

• 25% of White physicians

• 29% of Physicians overall

• 33% of Asian physicians

• 52% of Latino physicians

• 77% of African American physicians

7The Kaiser Family Foundation National Survey of Physicians (March 2002)

… believe that the health care system treats

people unfairly based on their racial or ethnic

background ―very‖ or ―somewhat often.‖

Page 8: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

Views on Health Disparities

• 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

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Results of a Kaiser Family Foundation survey conducted in 1999 of 3,884 whites,

African Americans, and Latinos. (Lillie-Blanton et al. 2000)

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)

Page 9: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

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 9Institute of Medicine Report (2002) Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care

Page 10: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

Importance of Trust

10

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 patient‘s 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)

Page 11: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

Declining Trust

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Teachers 86%

Clergymen or priests 85%

Doctors 83%

Scientists 79%

Judges 79%

Professors 77%

Police officers 75%

Ordinary man or woman 71%

(The) President 54%

Business leaders 49%

Members of Congress 46%

Journalists 43%

Trade union leaders 37%

Teachers 84%

Military officers 73%

Police officers 71%

Protestant ministers 68%

Doctors 66%

Catholic priests 45%

Government officials 26%

Lawyers 25%

CEOs of large corporations 23%

Managers of HMOs 20%

Harris and Associates Poll (1998) USA Today/CNN/Gallup Poll (2002)

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.

Page 12: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

Links to Health Outcomes

• 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

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Decreased trust has been associated with:

Thom and Campbell 1997, Safran et al. 1998

Page 13: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

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 patient‘s

satisfaction with care received from their

physician.

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Page 14: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

Trust:

Mediator of the Placebo Effect?

• ―Trust may have therapeutic value, enhancing the

efficacy of prescribed treatment.‖ (Faden and

Beauchamp, in Goold 2002)

• ―Trust is important in reducing anxiety, increasing

a patient‘s sense of being cared for, which in turn

may improve the patient‘s 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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Page 15: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

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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Page 16: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

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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Page 17: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

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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Page 18: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

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, Corbie-Smith 1999 and 2002)

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Page 19: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

Trust vs. Trustworthiness

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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)

Page 20: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

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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Page 21: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

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. That‘s what they used people for.‖ (Freimuth et al. 2001)

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Page 22: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

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, ‗let‘s 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.‖ (Freimuth2001)

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Page 23: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

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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Page 24: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

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 1950‘s.

• 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)24

Page 25: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

‘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‘ care—care they would not have received otherwise because of their socioeconomic status.‖ (As perceived by Nurse Rivers in Hammonds, 1994)

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Page 26: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

Contemporary Experience

―The legacy of the Tuskegee Study endures, in part, because the racism and disrespect for black lives that it entailed mirror black people‘s 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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Page 27: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

Building Trust is the

Profession’s 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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Page 28: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

Individual Physicians Can...

• Thoroughly Evaluate Problems

• Understand the Patient‘s 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

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Thom and Campbell 1997

Page 29: IVMS  Race Trust and Tuskegee-Medical Ethics  Broken Trust and Health Disparities

29

H1N1 Swine Flu 2009 Virus and Vaccination-

Historical and Political Considerations

IVMS -The Tuskegee Syphilis Experiment

IVMS-From the Tuskegee Syphilis Experiment to

Mandatory H1N1 Vaccinations

IVMS-H1N1 Swine Flu Virus2009 FAQ

IVMS-Intro to Clinical Medicine-

Communication Skills

Related Online iPapers by Dr. Cray