This document discusses the need to address biases that can negatively impact clinical care for patients with disabilities. It outlines three common biases: 1) ineffectual bias which perceives patients as less capable or competent based on narrow markers, 2) fragile friendliness bias which perceives patients as more fragile or saintly based on capacities for warmth, and 3) catastrophe bias which overestimates patient suffering and underestimates resilience. The document recommends educational and clinical interventions like raising awareness of biases, expanding clinical formulations, and increasing contact with people with disabilities to improve care and reduce inequities.

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. Problem

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. Problem Remains: Even Best
Institutional/Policy Solutions Miss a
Major Cause

5. Missing: Social Psychological Causes

6. Missing: Social-Psychological Causes

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. Outline
1. Legal and Bioethical Standards
2. Biases and Unequal Care
3. Educational and Clinical Interventions

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. Outline
1. Legal and Bioethical Standards
2. Biases and Unequal Care
3. Educational and Clinical Interventions

11. Biases and Unequal Care
• Diagnosis
• Treatment
• Prognosis
• Prevention
• Cost Considerations
• Patient & Clinician Hope
• End of Life
• Therapeutic alliance

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. 1. Ineffectual Bias
• Perception of being low in agency and/or
competence
• Perceivers extrapolate from narrow marker
(uncommon behavior, walker, etc.) to whole
person

15. 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

16. 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

17. 2. Fragile Friendliness Bias
• Perception of being higher on capacities for:
– pro-social warmth, pro-sociality, trustworthiness
(friendliness)
– subjective experience (fragile)

19. Clinical Fragility Bias
• Diagnosis: more severe dx; over-dx, testing
• Treatment: ; less conservative
• Prognosis: /underestimating resilience
• End of Life: suicidal projections

20. 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

21. 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

22. 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

24. Clinical Pessimism Bias
• Diagnosis: more severe
• Treatment: ; more conservative
• Prognosis: 
• Prevention: 
• Cost Considerations: 

25. 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

26. Biases and Unequal Care

27. Outline
1. Legal and Bioethical Standards
2. Biases and Unequal Care
3. Educational and Clinical Interventions

28. 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

29. 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.).

30. Thank You!

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