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Race Trust and Tuskegee-Medical Ethics Broken Trust and Health

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Marc Imhotep Cray, M.D.Link to the video enhanced version of this presentationGoals 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...2Disparities 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)3Due 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%)4Schneider et al. (2001,2002) found that among Medicare recipients in managed care health plans, African Americans were less likely than whites to receive:TransplantationDisparities5Median Waiting Time (in Months) to KidneyTransplant By RaceSource of Data for 1998 HHS OIG Report: Organ Procurement and Transplantation Network (OPTN), 1997 OPTN/SR AR 1988-1996. UNOS; DOT/HRSA/DHHS.YearBlack RecipientsWhite RecipientsDifference8.88.711.613.713.816.219.611.312.713.314.116.018.720.120.121.424.926.729.834.939.71988198919901991199219931994Who You Are Influences What You Think6The 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%Unfair Treatment •25% of White physicians•29% of Physicians overall•33% of Asian physicians•52% of Latino physicians •77% of African American physicians7The 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.‖ 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 8Results 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)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 CareImportance of Trust10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, Safran2001, Keating 2002)–Higher levels of trust between patients and their physicians are correlated with positive health outcomes. (Thom 1999, Safran1998)Declining Trust11Teachers 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%Teachers84%Military officers73%Police officers71%Protestant ministers68%Doctors66%Catholic priests45%Government officials26%Lawyers25%CEOs of large corporations23%Managers of HMOs20%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.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 status12Decreased trust has been associated with:Thom and Campbell 1997, Safranet al. 1998Trust and Patient Satisfaction•Patients with 95thpercentile trust scores were about 5 times more likely than those with median levels of trust to express complete satisfactionwith their physician. (Safranet al. 1998)•Thom et al. (1999) found trust to be a significant predictor of patient‘s satisfaction with care received from their physician.13Trust: Mediator of the Placebo Effect?•―Trust may have therapeutic value, enhancing the efficacy of prescribed treatment.‖ (Fadenand Beauchamp, in Goold2002) •―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?14Trust 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.‖ (Slovacin 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) 15Trust: Interpersonal InstitutionalTrust 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. 16American 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 (Doescher2000) –When asked if they trusttheir 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%). (Ayanian1999)•Still, most patients trust their own physician a great deal. 17Less Institutional Trust•Major Differences–African American men and women are less trusting of hospitals. (Boulware2002) –African Americans are less trusting of the reasons physicians use or withdraw life sustaining therapies. (Hauser 1997, Blackhall1999)–African Americans are less trusting of the organ donation system. (Yuen 1998, Siminoff1999)–African Americans have less trust in the health care system in general. (Gamble 1997, Freedman 1998, Minniefield2001)–African Americans have profound mistrust of medical research. (Freedman 1998, Freimuth2001, Shavers 2001, Corbie-Smith 1999 and 2002)18Trust vs. Trustworthiness19Physicians 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 Dedrick1990) 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, Freimuth2001•The Tuskegee Study (―USPHS Study of Untreated Syphilis in the Negro Male‖) involved deliberate infection with Syphilis. (Gamble 1997, Freimuth2001)20Guinea 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.‖ (Freimuthet al. 2001)21HIV & 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)22Views 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)23A 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. (Reverby2000)24‘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 Reverby2000)–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)25Contemporary 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.‖ (Blendonet 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)26Building 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? 27Individual 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 Factors28Thom and Campbell 199729H1N1 Swine Flu 2009 Virus and Vaccination-Historical and Political ConsiderationsIVMS -The Tuskegee Syphilis ExperimentIVMS-From the Tuskegee Syphilis Experiment to Mandatory H1N1 VaccinationsIVMS-H1N1 Swine Flu Virus2009 FAQIVMS-Intro to Clinical Medicine-Communication SkillsRelated Online iPapersbyDr. Cray30THE END, THANK YOU KINDLY FOR YOUR ATTENTIONCLICK HERE TO VISITIMHOTEP VIRTUAL MEDICAL SCHOOL

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Race Trust and Tuskegee-Medical Ethics Broken Trust and Health

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Marc Imhotep Cray MD
Medical Education, Computers & IT, Black Studies
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