Ethics and Healthcare for African Americans : Ethics and Healthcare for African Americans John R. Stone, MD, PhD Center for Health Policy and Ethics Creighton University Medical Center JohnStone@creighton.edu http://chpe.creighton.edu/chpe/stone.htm June 1, 2007


Purpose: Purpose Summarize important themes and ethical issues in healthcare of African Americans Give some broad practical applications


Driving Issue: Driving Issue Significant inequalities in health and healthcare that adversely affect African Americans


Black Diversity: Black Diversity History Beliefs National backgrounds Customs Melissa Welch. Care of Blacks and African Americans. In Cross-Cultural Medicine. edit. by Judyann Bigby. American College of Physicians 2003, pp. 29-60.


Special Emphasis: Special Emphasis Trust and trustworthiness Respect


Don’t Touch: Don’t Touch She: “You don’t want to touch me.” She was giving me change. She: Black. Stone: White. She ~ 20 Stone. ~ 28, USPHS medical officer Year: 1970 or 1971 Place: Galveston Texas.


Demanding? Hostile?: Demanding? Hostile? White patients “Demanding” Needs met Black patients “Hostile” Needs not met, or less well


Key Background: Key Background Pervasive inequalities, generally unjust Health Healthcare IOM 2003 (http://www.nap.edu/books/030908265X/html/) NHDR 2005 (http://www.ahrq.gov/qual/nhdr05/nhdr05.pdf) Life Expectancy 1983-2003 (Harper S, Lynch J, Burris S, Smith GD. Trends in the Black-White Life Expectancy Gap in the United States, 1983-2003. JAMA. 2007;297:1224-1232.)


Crucial Intersections-AA Healthcare: Crucial Intersections-AA Healthcare People Principle


B/W Life Expectancy Gap: B/W Life Expectancy Gap Harper S, Lynch J, Burris S, Smith GD. Trends in the Black-White Life Expectancy Gap in the United States, 1983-2003. JAMA. 2007;297:1224-1232. From the United States Life Tables of the National Center for Health Statistics.


B/W Life Expectancy @ Birth: B/W Life Expectancy @ Birth Harper S, Lynch J, Burris S, Smith GD. Trends in the Black-White Life Expectancy Gap in the United States, 1983-2003. JAMA. 2007;297:1224-1232. From the United States Life Tables of the National Center for Health Statistics.


Racial/EthnicHealthcare Inequalities : Racial/Ethnic Healthcare Inequalities Given: extensive evidence of healthcare inequalities by R/E. Is your institution assessing care by R/E? Evidence constitutes an imperative for careful assessment and remediation. Should the ethics committee be involved? Why? How? What should individual professionals do?


R/E HealthcareEthical Principles: R/E Healthcare Ethical Principles Respect (equal, substantial) Justice Care Community Stone JR. “Healthcare Inequality, Cross-Cultural Training, and Bioethics: Principles and Applications,” Accepted for publication in Special Section of Cambridge Quarterly of Healthcare Ethics: Illuminating Culture, Health, and Ethics: Beyond Equality and Justice. 2008; 17 (2), Spring. Stone JR, Parham, GP. An Ethical Framework for Community Health Workers and Related Institutions. Accepted for publication in Family & Community Health Journal. Spring/early fall 2007. Issue 30:4.


R/E Healthcare InequalitiesWhy Institutions May Not Assess : R/E Healthcare Inequalities Why Institutions May Not Assess Beliefs: R/E bias, stereotypes--none/trivial Fears: negative publicity & litigation Resources: takes them Threatening: talk about race and racism Strong responses take moral courage Dula A and Stone JR. “Wakeup Call: Healthcare and Racism.” Hastings Center Report, 2002; 32(4):48.


Don’t Touch: Don’t Touch She: “You don’t want to touch me.” She was giving me change. She: Black. Stone: White. She ~ 20 Stone. ~ 28, USPHS medical officer Year: 1970 or 1971 Place: Galveston Texas.


Crucial Intersections: Crucial Intersections People Principle


African AmericansHealth, Healthcare, and Ethics: African Americans Health, Healthcare, and Ethics Focus of Ethics Committees? Focus of Health Professionals?


Demanding? Hostile?: Demanding? Hostile? White patients “Demanding” Needs met Black patients “Hostile” Needs not met, or less well


Issues: Cross-cultural and More: Issues: Cross-cultural and More Whiteness Openness to anger, hostility Sensitivity to being labeled racist Humility that could be racially biased Intending equal care ≠ equal care Equal care ≠ color-blind care Historical knowledge and sensitivity


Information & RelationshipsWhite/Black: Information & Relationships White/Black Focus groups: patients with + cardiac stress testing Perception of information provided: equivalent. (“incomplete, vague, ambiguous, and unclear.” Blacks: “preference for building a relationship with physicians (trust) before agreeing to an invasive cardiac procedure, and just as consistently complained that trust was lacking.” Whites: “tended to emphasize that they were inadequately convinced of the need for recommended procedures.” Tracie C. Collins, Jack A. Clark, Laura A. Petersen, Nancy R. Kressin. Racial Differences in How Patients Perceive Physician Communication Regarding Cardiac Testing. Medical Care. 2002;40(1S): I-27–34.


Trust and Healthcare of African Americans: Trust and Healthcare of African Americans Trust and Trustworthiness Long and sordid history Rational Distrust Fallibility Assumption Trustworthiness primary Gamble, V. N. (2006). Trust, Medical Care, and Racial and Ethnic Minorities. Multicultural Medicine and Health Disparities. D. Satcher and R. J. Pamies. New York, McGraw-Hill: 437-448.


Sources of Distrust: Sources of Distrust “Perceptions that physician communication was less supportive, less partnering, and less informative accounted for black patients’ lower trust in physicians.” “Our findings also raise the question about whether there was variation in actual physician communication behaviors by race of patient, whether patients interpreted the communication behavior differently by race, or both.” Gordon HS. Street RL Jr. Sharf BF. et al. Racial differences in trust and lung cancer patients' perceptions of physician communication. J Clin Oncol. 2006;24(6): 904-9.


Preference or Trust?: Preference or Trust? Mrs. P, AA: early-stage endometrial cancer No evidence of metastasis. Vaginal bleeding stops after curettage. Gyn oncologist recommends hysterectomy. Says he has performed hundreds of these operations in the last several years and that the risks are very low. Mrs. P notices: women in the waiting room look very ill. She does not return to the doctor or return calls. K Armstrong, C Hughes-Halbert, DA Asch. Patient Preferences Can Be Misleading as Explanations for Racial Disparities in Health Care. Arch Intern Med. 2006;166:950-954.


Trust/Trustworthiness: Trust/Trustworthiness Case: African American person has a serious health condition. Doctor informs that interventions A, B, and C are reasonable, but recommends A. Doctor gives briefly summarizes why recommends A. Patient raises several complicated questions. The doctor answers them. More questions. Doctor: “you should just trust me.”


Distrust, History, Racial Experience: Distrust, History, Racial Experience Knowledge of how African Americans have been treated and their continued experiences is a step toward: Understanding rational distrust Empathizing with those who distrust Being open to and patient with distrust Personal transformation Building trustworthiness Building trust


Distrust and Resource Costs: Distrust and Resource Costs Extended care at end-of-life Increased litigation DeVille, Kenneth & Kopelman, Loretta M. Diversity, Trust, and Patient Care: Affirmative Action 25 Years after Bakke. J Med & Philos. 2003;28(4):489-516.


Building Rational TrustClinical Interactions: Building Rational Trust Clinical Interactions Respect Honesty Competency Transparency Humanistic caring Sustained patient-physician relationships Openness to variety Cross-cultural knowledge, sensitivity, humility, and agency enhancement Decision-sharing (cultural variation) Diverse workforce Insufficient empirical guidance K Armstrong, C Hughes-Halbert, DA Asch. Patient Preferences Can Be Misleading as Explanations for Racial Disparities in Health Care. Arch Intern Med. 2006;166:950-954. McKinstry B, Ashcroft RE, Car J. Interventions for improving patients' trust in doctors and groups of doctors. Cochrane Database Syst Rev. 2006;3: CD004134.


Building Rational Trust: Institutions: Building Rational Trust: Institutions Trustworthiness Focus (Radical change?) Major Community Involvement: Pervasive Develop comprehensive training programs: cross-cultural, respect, humility, power-sharing, agency-enabling Assess outcomes Diversify workforce: all levels (See advice for clinical interactions) See Gamble, V. N. (2006). Trust, Medical Care, and Racial and Ethnic Minorities. Multicultural Medicine and Health Disparities. D. Satcher and R. J. Pamies. New York, McGraw-Hill: 437-448.


Forms of AddressSeparate Cases: Forms of Address Separate Cases HC Professional: Good morning Sadie. Ms. Sadie Robinson is 75 years old HC Professional to family member: Let’s get you a chair. HC Professional to family: “What do you people think would be best for Mr. Taylor?” HC Professional: avoids touching


RespectEqual, Substantial, Particular: Respect Equal, Substantial, Particular Names Touch Recognition Regard Agency Passion and caring Sitting and listening


Real Case: Real Case Betty (40, healthcare worker): “I went to this doctor [for a pap smear]. I had an infection…She said, “How many sex partners to do you have? I said “Gulp” and just looked at her…She said, “Oh, you don’t know how many”….I felt like was a little piece of garbage. I was just…stereotyped: “There was a little black woman who’s out havin’ all of these men who comes in here with an infection…” Melissa Welch. Care of Blacks and African Americans. In Cross-Cultural Medicine. edit. by Judyann Bigby. American College of Physicians 2003, p 32.


Preferences? Respect?: Preferences? Respect? Mrs. S, AA, 65, routine checkup, different doctor. Near conclusion told needs flu shot, nurse will give Mrs. S is unsure; friends say flu shots make them sick. Doc leaves before Mrs. S can question. At checkout, Mrs. S declines the flu shot, marked as “refusing.” Did her refusal represent her preference? Blacks and Hispanics report worse communication than Whites Whites get more information K Armstrong, C Hughes-Halbert, DA Asch. Patient Preferences Can Be Misleading as Explanations for Racial Disparities in Health Care. Arch Intern Med. 2006;166:950-954.


Respect: Respect Quality attention Openness (heart, mind) Willingness to be vulnerable Deep/authentic curiosity Grows out of Mutuality Connection Engagement Honor Boundaries Privacy Sarah Lawrence-Lightfoot. Respect: An Exploration. Cambridge, MA: Perseus 2000, pp. 217, 224


Who are you?Default Assumptions: Who are you? Default Assumptions Are you just another privileged, ignorant, prejudiced professional?...……or not? Do you really care about me?.......or not? Do you respect me?........or not?


Respect: Respect


Healthcare InequalitiesCross-cultural education & training: Healthcare Inequalities Cross-cultural education & training Widely advised Minimal outcome data


Promoting Institutional Change: Promoting Institutional Change Advocacy Professionals Communities Law Ethics Committees


Prejudice & Stereotypes: Doctors: Prejudice & Stereotypes: Doctors Don’t think they are prejudiced Don’t believe stereotypes affect choices But unconscious prejudice and stereotypes can influence choices. Become mindful: that have biases & stereotypes that may affect decisions Be alert time pressure promotes reliance on prejudice and stereotypes Be mindful of negative responses Smith WR, Busey-Jones J. et al. (2006). Case Studies in Multicultural Medicine and Health Disparities. Multicultural Medicine and Health Disparities. D. Satcher and R. J. Pamies. New York, McGraw-Hill: 361-388.


Crucial Intersections: Crucial Intersections People Principle


References Cited: References Cited Melissa Welch. Care of Blacks and African Americans. In Cross-Cultural Medicine. edit. by Judyann Bigby. American College of Physicians 2003, pp. 29-60. IOM 2003 (http://www.nap.edu/books/030908265X/html/) NHDR 2005 (http://www.ahrq.gov/qual/nhdr05/nhdr05.pdf) Life Expectancy 1983-2003 (Harper S, Lynch J, Burris S, Smith GD. Trends in the Black-White Life Expectancy Gap in the United States, 1983-2003. JAMA. 2007;297:1224-1232.) Harper S, Lynch J, Burris S, Smith GD. Trends in the Black-White Life Expectancy Gap in the United States, 1983-2003. JAMA. 2007;297:1224-1232. From the United States Life Tables of the National Center for Health Statistics. Stone JR. “Healthcare Inequality, Cross-Cultural Training, and Bioethics: Principles and Applications,” Accepted for publication in Special Section of Cambridge Quarterly of Healthcare Ethics: Illuminating Culture, Health, and Ethics: Beyond Equality and Justice. 2008; 17 (2), Spring. Stone JR, Parham, GP. An Ethical Framework for Community Health Workers and Related Institutions. Accepted for publication in Family & Community Health Journal. Spring/early fall 2007. Issue 30:4. Dula A, Stone JR. “Wakeup Call: Healthcare and Racism.” Hastings Centr Report, 2002; 32(4):48. Tracie C. Collins, Jack A. Clark, Laura A. Petersen, Nancy R. Kressin. Racial Differences in How Patients Perceive Physician Communication Regarding Cardiac Testing. Medical Care. 2002;40(1S): I-27–34. Gamble, V. N. (2006). Trust, Medical Care, and Racial and Ethnic Minorities. Multicultural Medicine and Health Disparities. D. Satcher and R. J. Pamies. New York, McGraw-Hill: 437-448. Gordon HS. Street RL Jr. Sharf BF. et al. Racial differences in trust and lung cancer patients' perceptions of physician communication. J Clin Oncol. 2006;24(6): 904-9. K Armstrong, C Hughes-Halbert, DA Asch. Patient Preferences Can Be Misleading as Explanations for Racial Disparities in Health Care. Arch Intern Med. 2006;166:950-954. Sarah Lawrence-Lightfoot. Respect: An Exploration. Cambridge, MA: Perseus 2000, pp. 217, 224. Smith WR, Busey-Jones J. et al. (2006). Case Studies in Multicultural Medicine and Health Disparities. Multicultural Medicine and Health Disparities. D. Satcher and R. J. Pamies. New York, McGraw-Hill: 361-388.