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Omar Sultan Haque, "Humanizing Clinical Care for Patients with Disabilities"


Published on

June 1, 2018

Historically and across societies people with disabilities have been stigmatized and excluded from social opportunities on a variety of culturally specific grounds. These justifications include assertions that people with disabilities are biologically defective, less than capable, costly, suffering, or fundamentally inappropriate for social inclusion. Rethinking the idea of disability so as to detach being disabled from inescapable disadvantage has been considered a key to twenty-first century reconstruction of how disablement is best understood.

Such ‘destigmatizing’ has prompted hot contestation about disability. Bioethicists in the ‘destigmatizing’ camp have lined up to present non-normative accounts, ranging from modest to audacious, that characterize disablement as “mere difference” or in other neutral terms. The arguments for their approach range from applications of standards for epistemic justice to insights provided by evolutionary biology. Conversely, other bioethicists vehemently reject such non-normative or “mere difference” accounts, arguing instead for a “bad difference” stance. “Bad difference” proponents contend that our strongest intuitions make us weigh disability negatively. Furthermore, they warn, destigmatizing disability could be dangerous because social support for medical programs that prevent or cure disability is predicated on disability’s being a condition that it is rational to avoid. Construing disability as normatively neutral thus could undermine the premises for resource support, access priorities, and cultural mores on which the practice of medicine depends.

The “mere difference” vs. “bad difference” debate can have serious implications for legal and policy treatment of disability, and shape strategies for allocating and accessing health care. For example, the framing of disability impacts the implementation of the Americans with Disabilities Act, Section 1557 of the Affordable Care Act, and other legal tools designed to address discrimination. The characterization of disability also has health care allocation and accessibility ramifications, such as the treatment of preexisting condition preclusions in health insurance. The aim of this conference was to construct a twenty-first century conception of disablement that resolves the tension about whether being disabled is merely neutral or must be bad, examines and articulates the clinical, philosophical, and practical implications of that determination, and attempts to integrate these conclusions into medical and legal practices.

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Omar Sultan Haque, "Humanizing Clinical Care for Patients with Disabilities"

  1. 1. Humanizing Clinical Care for Patients with Disabilities Omar Sultan Haque, M.D., Ph.D. Department of Global Health & Social Medicine; Program in Psychiatry and the Law, Harvard Medical School Departments of Anthropology & Psychology, Faculty of Arts and Sciences, Harvard University Michael Stein, J.D., Ph.D. Harvard Law School
  2. 2. Problem
  3. 3. “We recommend future research and policy directions to address health inequities for individuals with disabilities; these include improved access to health care and human services, increased data to support decision- making, strengthened health and human services workforce capacity, explicit inclusion of disability in public health programs, and increased emergency preparedness.”
  4. 4. Problem Remains: Even Best Institutional/Policy Solutions Miss a Major Cause
  5. 5. Missing: Social Psychological Causes
  6. 6. Missing: Social-Psychological Causes
  7. 7. Goals • Connect social scientific study of prejudice and discrimination: – To experiences of persons with disabilities – In clinical contexts • Characterize/formalize known biases • Describe how biases impact clinical decision making • Prevent further harm • Develop new clinical and educational research questions and concepts to test that are likely to improve clinical care for persons with disabilities
  8. 8. Outline 1. Legal and Bioethical Standards 2. Biases and Unequal Care 3. Educational and Clinical Interventions
  9. 9. Legal and Bioethical Standards: Unrealized Ideals In the Clinic • Non-discrimination; reasonable accommodations • Informed consent’s psychological foundations • United States, the Rehabilitation Act of 1973 – E.g. public and private recipients of federal funding (hospitals and research laboratories) • Americans with Disabilities Act – Title II: state-based programs (e.g., medical and nursing schools) – Title III: private providers of medical care (e.g., pharmacies, physicians’ offices, HMOs).
  10. 10. Outline 1. Legal and Bioethical Standards 2. Biases and Unequal Care 3. Educational and Clinical Interventions
  11. 11. Biases and Unequal Care • Diagnosis • Treatment • Prognosis • Prevention • Cost Considerations • Patient & Clinician Hope • End of Life • Therapeutic alliance
  12. 12. Clarification • Clinician’s job – accuracy in assessment of mental state of patient (sensitively observing and attentively listening); meeting people where they are • Bias – systematic pattern of inaccuracy in mental state attribution and/or decision making
  13. 13. 1. Ineffectual Bias • Perception of being low in agency and/or competence • Perceivers extrapolate from narrow marker (uncommon behavior, walker, etc.) to whole person
  14. 14. Clinical Paternalism Bias • Diagnosis: quality; – discount patient’s “unreliable” experience; – more use of collateral sources; – discount poor self-care or self-destructiveness • Treatment: –  based on patient’s “unreliable” preferences; – conservative as patient presumed less able to comply with complex treatment
  15. 15. Clinical Paternalism Bias • Prevention: –  neglected; – when present, oriented to environment/social supports not patient • Prognosis:  pessimistic • Cost + End of Life Considerations:  (physician>patient goals) • Patient Empowerment: ; self care; • Therapeutic alliance: shared decision making
  16. 16. 2. Fragile Friendliness Bias • Perception of being higher on capacities for: – pro-social warmth, pro-sociality, trustworthiness (friendliness) – subjective experience (fragile)
  17. 17. Clinical Fragility Bias • Diagnosis: more severe dx; over-dx, testing • Treatment: ; less conservative • Prognosis: /underestimating resilience • End of Life: suicidal projections
  18. 18. Clinical Saintliness Bias • Underestimation of the ways in which the darker parts of human nature contribute to clinical outcomes • Diagnosis: – less likely to look for non-saintly script: self- destructive, and anti-social mental states and behaviors underlying clinical presentation • Prognosis: /optimistically overestimated
  19. 19. Clinical Saintliness Bias • Treatment, Prevention: – assume adherence to medications and other preventative interventions, and not check for their absence • Therapeutic alliance: – Patient denied ability to feel everyday frustration, uncertainty, loss of control, paradox, disappointment, pain, and humiliation
  20. 20. 3. Catastrophe Bias • Overestimating suffering (hopelessness, wanting to die) than what the person actually experiences • Underestimating resiliency, adaptation, growth – E.g. spinal cord injury, amputation, terminal cancer
  21. 21. Clinical Pessimism Bias • Diagnosis: more severe • Treatment: ; more conservative • Prognosis:  • Prevention:  • Cost Considerations: 
  22. 22. Clinical Pessimism Bias • Patient Hope: ; self care; nocebo effects • Clinician Hope: ; quality care • End of Life: suicidal projections • Spoiled therapeutic alliance/distrust of patient – If not affirm the clinician’s requirement for patient’s perpetual suffering, shame, and mourning
  23. 23. Biases and Unequal Care
  24. 24. Outline 1. Legal and Bioethical Standards 2. Biases and Unequal Care 3. Educational and Clinical Interventions
  25. 25. Educational & Clinical Interventions • Consciousness raising: make biases known so they can be avoided • Case Studies: include actual persons with disabilities, not abstractions of hypothetical humanoids one never meets • Expand Clinical Formulation
  26. 26. Educational & Clinical Interventions • Increase Contact – Accepting qualified persons with disabilities as clinical students; – Empowering those students as peer educators; – Integrating disabled persons as faculty and community-based teachers • Lifelong: Start in year one of clinical training; continue until retirement; • Include More Than MDs; i.e. clinicians who actually do the caregiving (PA, OT, PT, nurses, technicians, etc.).
  27. 27. Thank You!
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