Race/Ethnicity Ethics, Health, Healthcare John R. Stone, MD, PhD Center for Health Policy and Ethics Creighton University OTD/2010 JohnStone@creighton.edu http://chpe.creighton.edu/ Learning Objectives • Explain ethical frameworks and strategies for addressing racial/ethnic inequalities in OT care. • Outline ethical bases of professional obligations to improve racial/ethnic health inequalities. • Summarize racial/ethnic health & healthcare inequalities. Strategies, Topics • • • • Background: health & healthcare inequalities Cases ethics & methods cases Ethical theories, principles/values, codes, rights Concepts: race/ethnicity, disparities, equity/inequity, respect, justice, consequentialism, care, solidarity • Areas of focus Individual client/patient System and community State-Region-Nation-Globe Defining Race/Ethnicity • Social or political ascriptions or constructions that: ▫ Relate to social and political agendas ▫ May reflect presumed ancestral or geographical origin ▫ Often are meant to imply and/or sustain level of social status or value FYI: http://www.census.gov/population/cen2000/phc-2-a-B.pdf Biology and Race/Ethnicity • Socially constructed identities have biological consequences. • Different biology does not imply or mean different genetics. • Racial/ethnic labeling can have connections to ancestral migration patterns that may correlate with genetic differences. Racial/Ethnic Inequalities Health Healthcare • Mortality/survival • Morbidity/life-quality ▫ Pain, disability and suffering that is healthrelated • Access • Quality Case: Front Office-1 • You are a practitioner in the OT section of one hospital in a health system. You are White and of European descent. • You notice that a front office person is commonly less patient with patients that appear to be Latino or Asian. Case: Front Office-2 • What ethical principles, values, and or rights are violated? • What should you do? • Who might you consult for advice? Case: Front Office-3 Moral Anchors/Foundations • Equal human worth • Respect for persons ▫ ▫ ▫ ▫ ▫ ▫ ▫ Equal Substantial Principles Regard Values Preservation/honoring dignity Recognition Empowerment Ensuring autonomy Case: Front Office-3 Moral Anchors/Foundations • • • • • √ Equal human worth √ Respect for persons Justice Care Solidarity Case: Front Office-4 Moral Anchors/Foundations Fairness Justice Remediation Repair Restoration Case: Front Office-5 Moral Anchors/Foundations Respect Care Equal Action Substantial Solidarity Justice Action Fairness Relationships in Ethics Theory Principles, values Cases Codes Case: Front Office-6 Moral Problems/Infractions Disrespect Unequal Less substantial value DAMAGE Justice Unfairness Unjust HEALTH DAMAGE Case: Front Office-7 Strategic Responses • • • • • Get advice Assess the evidence Reflect (moral framework/anchors) Speak to the leadership Respect the person who is treating people unequally • Try informal approaches • Consider formal action Case: Front Office-8 Strategic Responses • Value/principle affirmation • Cultural competence training • Coalition/partnership building Case: Front Office-9 Variations • A professional peer is at fault • A higher level person is the agent of disrespect • A system issue may be a cause Perception to Action Act Perceived moral problem Consider actions Moral/ethical reflection Case: Racial/Ethnic (R/E) Outcomes-1 • Hypothetical: R/E minorities commonly receive unequal and inferior OT care. • Extensive evidence in healthcare generally* ▫ Common inferior care of R/E minorities ▫ Probable causes: system, hospital, practitioner *Institute of Medicine 2003, numerous other studies Case: R/E Outcomes-2 • Your organization does not assess the quality of any care according to race and ethnicity. • What should you do? • What are some options for action? • What ethical considerations, principles, values, or theories might be helpful? Health Inequalities & OT-1 • Health disparities have been identified as a national priority for health care during the past decade. • Multiple definitions of health disparities. Bass-Haugen 2009 Racial/Ethnic Health/Healthcare Equality Terminology • • • • Disparities/Parity Equality/Inequality Equity/Inequity Gap AHRQ National Healthcare Disparities Report 2009 • Key themes ▫ ▫ ▫ ▫ Disparities common Uninsurance big factor Many disparities are not decreasing. Some disparities merit particular attention, especially care for cancer, heart failure, and pneumonia. Agency for Healthcare Research and Quality (AHRQ) http://www.ahrq.gov/qual/nhdr09/nhdr09.pdf (Accessed 05Dec2010) Distribution of core quality measures AHRQ NHDR 2009, P. 3 AHRQ National Healthcare Disparities Report 2009 • AHRQ and HHS are trying to accelerate the pace of improvement by: ▫ Training providers. ▫ Raising awareness. ▫ Forming partnerships to identify and test solutions. Agency for Healthcare Research and Quality (AHRQ) http://www.ahrq.gov/qual/nhdr09/nhdr09.pdf (Accessed 05Dec2010) Health Disparities/Inequalities Definitions: Health Disparities • NIH definition: “differences in the incidence, prevalence, mortality, and burden of diseases and other adverse health conditions that exist among specific population groups in the [USA] • Healthy People 2010 disparities groups: “gender, race or ethnicity, education or income, disability, geographic location, or sexual orientation” Bass-Haugen 2009 Health Inequalities & OT Evidence Review • “There was evidence of health disparities in children and adults that are relevant for occupational therapy as it relates to race/ethnicity and socioeconomic status.” • Bass-Haugen JD. Health disparities: Examination of evidence relevant for occupational therapy. Am J Occup Ther. 2009; 63(1):24-34.2. (Underlining added) Health Inequalities Causal Factors Social Determinants Person-related • • • • • • • • • • • Environment Income/wealth Education Healthcare Access Oppression Discrimination Lifestyle Preferences Views & Attitudes English proficiency Literacy Bass-Haugen 2009 Health Inequalities & OTMulticulturalism & Health Disparities • “The national goal of eliminating health disparities is important for [OT].” • 1990s: [OT increased] awareness of multicultural issues and promoted studies and publications that explored…diversity.” • However, OT focus on health disparities is quite recent. Bass-Haugen 2009 Health Inequalities & OTOT Literature & Studies: Limited Topics Emerging Topics • • • • • Social/occupational justice • Occupational deprivation • Client advocacy Prejudice Healthcare justice Minorities Access Bass-Haugen 2009 Health Inequalities & OTNational Data Review: OT-Related Adult Activity & Participation • Negative emotions • Activity performance limitations & difficulties • Infrequent participation in physical activity Black, Multiple Race, Hispanic, Poor • More likely than Whites Bass-Haugen 2009 Health Inequalities & OTNational Data Review: OT-Related Children: All & Special Needs Occupations & Environments Black, Multiple Race/ethnicity, Hispanic, Poor • Activity profiles • Environment ▫ School ▫ Safety & supportiveness of schools, neighborhoods, communities • Health characteristics • Healthcare needs • Worse Bass-Haugen 2009 Center for Health Policy and Ethics DeLancey JO, Thun MJ, Jemal A, Ward EM. Recent trends in black-white disparities in cancer mortality. Cancer Epidemiol Biomarkers Prev. 2008; 17(11):2908-2912. Center for Health Policy and Ethics DeLancey JO, Thun MJ, Jemal A, Ward EM. Recent trends in black-white disparities in cancer mortality. Cancer Epidemiol Biomarkers Prev. 2008; 17(11):2908-2912. Center for Health Policy and Ethics DeLancey JO, Thun MJ, Jemal A, Ward EM. Recent trends in black-white disparities in cancer mortality. Cancer Epidemiol Biomarkers Prev. 2008; 17(11):2908-2912. National (DHHS) Health Disparities Priorities CDC 2010 Focus Areas-Disparities • “The Department of Health and Human Services (HHS) has selected six focus areas in which racial and ethnic minorities experience serious disparities in health access and outcomes.” • • • • • • Cancer screening, management Cardiovascular disease Diabetes HIV Infection/AIDS Immunizations Infant mortality http://www.cdc.gov/omhd/AMH/dbrf.htm (Accessed 08Dec2010) Chartbook, Health, United States, 2009, p. 45. http://www.cdc.gov/nchs/data/hus/hus09.pdf (Accessed 04Dec2010) http://www.commonwealthfund.org/usr_doc/Mead_racialethnicdisparities_chartbook_1 111.pdf?section=4039 (Accessed 05Dec2010) http://www.commonwealthfund.org/usr_doc/Mead_racialethnicdisparities_chartbook_1111.pdf? section=4039 (Accessed 05Dec2010) http://www.commonwealthfund.org/usr_doc/Mead_racialethnicdisparities_chartbook_1111.pdf?se ction=4039 (Accessed 05Dec2010) http://www.commonwealthfund.org/usr_doc/Mead_racialethnicdisparities_chartbook_1111.pdf?se ction=4039 (Accessed 05Dec2010) Chart 3-10. Percentage of people age > 20, 2003 http://www.commonwealthfund.org/usr_doc/Mead_racialethnicdisparities_chartbook_1111.pdf?section=4039 (Accessed 05Dec2010) Chart 3-10. Percentage of people age > 20, 2003 http://www.commonwealthfund.org/usr_doc/Mead_racialethnicdisparities_chartbook_1111.pdf?section=4039 (Accessed 05Dec2010) Chart 3-10. Percentage of people age > 20, 2003 http://www.commonwealthfund.org/usr_doc/Mead_racialethnicdisparities_chartbook_1111.pdf?section=4039 (Accessed 05Dec2010) Chart 3-10. Percentage of people age > 20, 2003 http://www.commonwealthfund.org/usr_doc/Mead_racialethnicdisparities_chartbook_1111.pdf?section=4039 (Accessed 05Dec2010) Chart 4-1. P. 47 http://www.commonwealthfund.org/usr_doc/Mead_racialethnicdisparities_chartbook_1111.pdf?section=4039 (Accessed 05Dec2010) Chart 6-24, P. 89 http://www.commonwealthfund.org/usr_doc/Mead_racialethnicdisparities_chartbook_1111.pdf?section=4039 (Accessed 05Dec2010) Health Inequalities & OTNational Data Review: OT-Related Healthcare Outcomes and Experiences: OT Relevance • Healthcare experiences • Nursing facility outcomes • Home health outcomes Black, Multiple Race/ethnicity, Hispanic, Poor • Generally less positive • NF and HH outcomes inconsistent by R/E • “It is clear, however, that disparities exist on measures of health directly related to occupational therapy practice. These trends need further study to understand the influencing factors on incidence.” Bass-Haugen 2009 Social Justice & OT • “Occupational therapy’s vision is to promote social justice by enabling people to participate as valued members of society despite diverse or limited occupational potential. The profession promotes social justice through practical approaches that enable people to develop their occupational potential. (Townsend, 1993, p. 176)” Elizabeth Townsend, quoted in Braveman & Bass-Haugen 2009 Social Justice & OT • “Social justice is a broad term that encompasses several interrelated concepts, such as equality, empowerment, fairness in the relationship between people and the government, equal opportunity, and equal access to resources and goods.” Braveman & Suarez-Balcazar 2009, italics added Occupational Justice • “Occupational justice asks us to consider the inequities that arise when participation in occupations is “barred, confined, restricted, segregated, prohibited, undeveloped, disrupted, alienated, marginalized, exploited, excluded, or otherwise restricted” (Townsend & Wilcock, 2004, p. 77).” Braveman & Suarez-Balcazar 2009 Addressing Healthcare Inequalities Moral Frameworks Justice: Equality of Opportunity (Daniels) Social Justice: Sufficient Level of Health (Powers & Faden) • Health as normal functioning is important for fair equality of opportunity to envision and pursue diverse and reasonable life goals. • Equal human worth and respect for persons justifies a conception of social justice in which all should be provided sufficient aspects of wellbeing, including health. • How to advance this heath goal depends on circumstances. • Daniels N. Just Health Care. New York: Cambridge Univ. Press, 1985. Daniels N. Just Heath: Meeting Health Needs Fairly. New York, NY: Cambridge Univ. Press, 2008. • Powers M, Faden R. Social Justice: The Moral Foundations of Public Health and Health Policy. New York: Oxford Univ. Press, 2006. Case: R/E Outcomes-2 • Your organization does not assess the quality of any care according to race and ethnicity. • What should you do? • What are some options for action? • What ethical considerations, principles, values, or theories might be helpful? Healthcare Disparities/Inequalities What should your institution do? Train Providers • “Cultural expectations, assumptions, and language affect the quality of care patients receive. Some efforts have focused on training health care personnel to deliver culturally and linguistically competent care for diverse populations” AHRQ NHDR 2009, P. 11. Healthcare Disparities/Inequalities What should your institution do? Raise Awareness • “Other efforts to address health care disparities leverage key partnerships to raise awareness of disparities by using data and research.” AHRQ NHDR 2009, P. 12. Healthcare Disparities/Inequalities What should your institution do? Form Partnerships To Identify and Test Solutions • “Other partnerships leverage both public and private partners to address health care disparities at the community and provider level.” AHRQ NHDR 2009, P. 11. Chart 7-10, P. 106 Better Quality of Care: Myocardial Infarction http://www.commonwealthfund.org/usr_doc/Mead_racialethnicdisparities_chartbook_1111.pdf?section=4039 (Accessed 05Dec2010) Hospital Equity Reports Monitor Center for Health Policy and Ethics Assess Equality in Quality Race Ethnicity Language SES Intervene Weinick 2008 Quality Improvement Example: Beta Blockers in Acute Myocardial Infarction (Heart attacks) Center for Health Policy and Ethics Exclusions Record review Criteria Intervene Data Interpret Hospital Equity Reports Policy Institutional Change Center for Health Policy and Ethics • “In order to assess and address racial and ethnic disparities on an ongoing basis, all relevant performance improvement data should be collected and stratified by race and ethnicity.” (MGH) Weinick 2008, p. 13 Case: Hostility/Anger-1 • You are a White OT practitioner. • A 68-year old African American man is referred for OT care after a stroke that leaves him significantly hemiparetic, but cognitively intact. • Over 2-3 visits he exhibits continued hostility and anger. • Neurological assessment in hospital did not suggest that his stroke caused these attitudes. • These attitudes seem directed at you, not reactions to his stroke-induced problems. Case: Hostility/Anger-2 • You express concern to his wife and learn from her that he has long experienced many “microaggressions” or small racial affronts from Whites. His hostility and anger toward you are a consequence, she believes. • She adds that her husband often has these attitudes when he has to deal with White people. • She expresses her appreciation for your care and asks that you be patient with him. Case: Hostility/Anger-3 • You are quite challenged by his anger/hostility. • You recognize the challenge and want to develop more constructive responses. • Your main objective is to improve his OT-related outcomes. • Of course, you believe that caring and respectful approaches are professionally essential and important for healing. Case: Hostility/Anger-4 • What strategies might you employ to gain insight and improve the relationship? • What ethical approaches, values, and theories might be useful? Case: Hostility/Anger-5 Narrative Ethics Guidance • Imagine walking in his shoes for decades. • Envision multiple micro- and some macroaggressions and/or discrimination. • Study some related literature • Feel the injury and injustice • Appreciate the reasonableness of anger/hostility. Case: Hostility/Anger-6 Narrative Ethics Guidance • Write his hypothetical story. • Employ that understanding & empathic connection to be: ▫ ▫ ▫ ▫ ▫ ▫ Caring Concerned Patient Respectful In Solidarity Appreciative (of his life) Case: Distrust-1 • You are providing OT services to a 45 year-old Latina woman. She is recovering from significant musculo-skeletal and head injuries from a car accident. • English is her second language and she only speaks and understands it moderately well. • You are a White Anglo who only speaks English. Case: Distrust-2 • You sense that she distrusts you, an impression that the family confirms. They also exhibit some distrust that you are failing to show her the same respect and care as you do Anglos. • Initially you feel insulted. Your professional character seems under attack. • You feel hurt and somewhat outraged. After all, you are a caring and dedicated OT professional. Case: Distrust-3 • What should you do? • What strategies might you employ? • What ethical approaches, values, and theories might be useful? Case: Distrust-4 Narrative Ethics • Learn and imagine her history. • Envision repeated ethnic slurs, discrimination, and devaluation. • Imagine repeated treatment with disrespect by practitioners. • Reflect on background principles of respect, justice, and care. Case: Distrust-5 • Consider ignorance about her culture and beliefs. • Perceive the rationality of her distrust. • Accept the distrust. • Bridge the divide with her and family. • Look for many small ways to show care and respect. • Get help. Case: Distrust-6 Cultural Humility • Assume ignorance • Presume you have stereotypical assumptions and ethnic bias • Accept that you may need professional growth. • Inquire about how to show respect and care (family may be a helpful source). • Get help from colleagues and those with more cultural knowledge. Tervalon & Murray-Garcia 1998 Case: Unequal OT Services-1 • In your community, a disadvantaged racial or ethnic subgroup: ▫ ▫ ▫ ▫ Lives mainly in one geographic area Has higher unemployment and low income Has significant transportation challenges Has limited access to OT and related services, all contributing to reduced occupational opportunities Addressing Healthcare Inequalities Moral Frameworks Justice: Equality of Opportunity (Daniels) Social Justice: Sufficient Level of Health (Powers & Faden) • Health as normal functioning is important for fair equality of opportunity to envision and pursue diverse and reasonable life goals. • Equal human worth and respect for persons justifies a conception of social justice in which all should be provided sufficient aspects of wellbeing, including health. • How to advance this heath goal depends on circumstances. • Daniels N. Just Health Care. New York: Cambridge Univ. Press, 1985. Daniels N. Just Heath: Meeting Health Needs Fairly. New York, NY: Cambridge Univ. Press, 2008. • Powers M, Faden R. Social Justice: The Moral Foundations of Public Health and Health Policy. New York: Oxford Univ. Press, 2006. Moral Anchors/Guides/Sources Elaborations • Ethical Theories ▫ ▫ ▫ ▫ Justice Consequentialism/utilitarianism Feminist Narrative • Ethical Principles/values (frameworks) • Ethical Professional Codes Case: Unequal OT Services-2 Center Planning & Service • To enhance health and employment, the Health Department decides to establish a multidisciplinary center in the subgroup’s area. • An OT professional, you are invited to join the planning group for the center. • Whether you help plan it, you could provide voluntary OT services at the center. Challenges • Social inequalities causing racial/ethnic inequalities • Social inequalities causing unequal health • Social inequalities causing unequal healthcare • Unequal healthcare Case: Unequal OT Services-3 Ethical Obligations-1 • Professionally, whether you help the plan Center or voluntarily serve there is: ▫ Ethically neutral, a matter of personal choice. ▫ Ethically obligatory or required, provided that other moral obligations are not more or equally important important. • Is there enough information to decide? Case: Unequal OT Services-4 Ethical Obligations-2-Core Issues • Are OTs professionally obligated to work toward elimination of social inequalities that adversely affect population health or to serve disadvantaged groups? Examples: ▫ Activism or advocacy to change policies and enhance services, environments, and other social factors that advance health ▫ Collaborative leadership and partnering ▫ Voluntary or lower-pay services OT Professional Obligations Social Influences, Inequitable Services • Equal moral worth • Respect for persons • Social justice ▫ Sufficiency of health: part of well-being • Care • Solidarity OT Professional Obligations Social Influences on Health • • • • Social contract Societal benefits Reciprocity Society’s main focus on health OT Professional Obligations Social Influences on Health • Obligation to address “upstream” social influences on health • Options ▫ ▫ ▫ ▫ ▫ ▫ Help plan new center Advocate for additional funding Promote community partnering Build colleague coalitions Provide voluntary service Many others Moral Theories • • • • Justice Consequentialism/utilitarianism Feminist Rights Relationships in Ethics-Conception 1 Theory Principles, values Codes Relationships in Ethics-Conception 2 Theory Rights Principles, Values Codes Relationships in Ethics-Conception 3 Theory Principles, values Cases Codes Intersections: Moral Theories Justice Consequentialism/Utilitarianism Core Ethical Concepts for Theories • All people have equal and significant moral worth. • Equal worth means that all are due equal respect. • Respect includes honoring dignity, empowering those with inferior capability, extending recognition, and enabling autonomous choices. Ethical Theory: Utilitarianism/Consequentialism • What is right to do what maximizes the net good. • Net good: sum of all benefits less all harms • “Equalitarian” ▫ Everyone’s good counts equally ▫ Everyone’s outcomes matter ▫ Same outcomes matter equally Ethical Theory: Utilitarianism/Consequentialism Problematic Features • Problematic description: greatest good for the greatest number. • Can imply sacrificing some interests or even persons for the great good. Ethical Theory: Feminist Theory Some key elements • • • • We function in relationships Care considerations are pervasive We are or will be dependent Structures by default reflect ways to maintain power differences, including by gender (add race/ethnicity, culture, and others) • Styles of discourse, exchange, and/or expression often maintain power relationships. Ethical Theory: Rights • Legal rights • Ethical rights ▫ Derived from ethical theories and principles ▫ Intrinsic, such as by virtue of our humanity • Political traction issues Conclusions: Race/Ethnicity, Health, Healthcare • R/E inequalities or disparities are: ▫ Common ▫ Generally unjust and inequitable ▫ Reflect lack of Respect Justice Care Solidarity Conclusions Race/Ethnicity, Health, Healthcare • OT (and other) practitioners are professionally obligated to: ▫ Understand the extent of such inequalities ▫ Spend part of their time addressing these disparities, including upstream causal factors in society ▫ Work toward quality improvement of their care and that of their system/institution. References: Race/Ethnicity and Healthcare • AHRQ. Agency for Healthcare Quality and Research. National Healthcare Disparities Report, 2009. Key Themes. http://www.ahrq.gov/qual/nhdr09/Key.htm. (Accessed 13Nov2010) • Bass-Haugen JD. Health disparities: Examination of evidence relevant for occupational therapy. Am J Occup Ther. 2009; 63(1):24-34.2. • Braveman B, Bass-Haugen JD. Social justice and health disparities: An evolving discourse in occupational therapy research and intervention. Am J Occup Ther. 2009; 63(1):7-12.3. • Braveman B, Suarez-Balcazar Y. Social justice and resource utilization in a community-based organization: A case illustration of the role of the occupational therapist. Am J Occup Ther. 2009; 63(1):13-23. • CDC 2010. Office of Minority Health & Health Disparities. Disease Burden & Risk Factors. http://www.cdc.gov/omhd/AMH/dbrf.htm (Accessed 04Dec2010) • Chartbook, Health, United States, 2009. http://www.cdc.gov/nchs/data/hus/hus09.pdf (Accessed 04Dec2010) • Crossing the Quality Chasm: A New Health System for the 21st Century. Institute of Medicine (IOM). Washington D.C.: The National Academies Press, 2001. http://books.nap.edu/openbook.php?record_id=10027&page=R1 (Accessed 12Nov2010) • Dula, Annette and Stone, JR. “Wakeup Call: Healthcare and Racism,” Hastings Center Report. 2002; 32(4):48. References: Race/Ethnicity and Healthcare • Slater, Deborah Yarett. (Ed.) The Reference Guide to the Occupational Therapy Code of Ethics. AOTA Press. 2006. • IOM 2003: Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Institute of Medicine. Smedley BD, Stith AY, Nelson AR (Eds). Washington D.C.: The National Academies Press, 2003. http://www.nap.edu/openbook.php?isbn=030908265X (Accessed 12Nov2010) • Stone JR and Dula A. “Race/Ethnicity, Trust, and Health Disparities: Trustworthiness, Ethics, and Action.” Book chapter, Cultural Proficiency in Addressing Health Disparities. Editors: Kosoko-Lasaki S, Cook CT, O'Brien RL. Sudbury, MA: Jones & Bartlett, 2008, pp. 37-56. • Tervalon M, Murray-Garcia J. Cultural humility versus cultural competence: A critical distinction in defining physician training outcomes in multiculural education. J of Health Care for the Poor and Underserved. 1998; 9(2):117-125. • .Weinick, Robin M; Flaherty, Katherine; Bristol, Steffanie J. Creating Equity Reports: A Guide for Hospitals. The Disparities Solutions Center, Massachusetts General Hospital, 2008. http://www2.massgeneral.org/disparitiessolutions/z_files/Disparities%20Hospital%20gui de.qxp.pdf