Presented at the University of British Columbia, Vancouver BC, Canada

1. Mark Sullivan, MD PhD
University ofWashington
Psychiatry and Behavioral Sciences
Anesthesiology and Pain Medicine
Bioethics and Humanities

2.  Patient agency is both the primary means
and primary end of health care for chronic
illness.
 OED: Agency
 “the faculty of an agent or of acting; active
working or operation: action, activity.”

3.  What is health?What are its sources?
 Is health primarily observed or experienced?
▪ Is it experienced as well-being or as capability?
 Does health arise from professional health svcs?
▪ What role does the patient play in health production?
▪ How do health services promote and retard health?
▪ What besides health services promote health?

4.  Bioethics has provided a procedural ethics
focused what is right > what is good
 Patient autonomy vs. physician beneficence
 Add patient values to professional facts
 Patient-centered approach aspires to achieve
both ethical and effective care
 from informed consent to shared decision-making

5.  Can something be both patient and agent?
 Aristotle (Physics III3): both moved and mover?
 How can something move itself?
 How can something heal itself?
 Biology and medicine are blind to agency, the
source of self-movement and self-healing

6.  Amartya Sen: what makes societies better?
 What is the nature of social value?
 Not GDP, not well-being, but basic capabilities
 “Agent-oriented” view where it is important how
and who achieves welfare
 Sen: cannot understand the well-being of
persons without understanding their agency

7.  Chronic illness poses fundamental challenge
to clinical practice and medical science
 Cannot target only death and disease
 Must incorporate patient perspective and efforts
 PCC: new measure of health care quality
 Berwick: “nothing about me without me”
 Wagner: activated patient at center of CCM
 Both patient perspective + patient participation

8.  Chronic illness care must not only respect
patient autonomy, but promote it
 Informed consent re-personalizes the
treatment decision after the clinical problem
has been framed by impersonal diagnosis
 Bioethics uses patient autonomy as an
antidote to the paternalism of objective
medical diagnosis

9.  Objective mortality/morbidity not adequate
 HRQL adds pt. experience to obj. disease states
 HRQL has not revolutionized care or research
 Objective health used for medical necessity,
but it is not prior to self-rated health
 Causal: SRH predicts mortality, disability, hosp.
 Conceptual: obj. health discovered through SRH
 Experiential: SRH can change w no change in obj.

10.  Activating patient for self-management is
crucial to improve chronic illness outcomes:
 medications, exercise, stress management, diet
 Maintaining behavior change is most difficult
 Activation process:
Reinforce behavior  intentional action  autonomous action
Obedient patient confident, skilled internalized motivat.
-Patient autonomy is a clinical goal, not just ethical
Clinicians not responsible for patients, but to patients

11.  Pt action: means to healthessence of health
 Patient autonomy (choices) is rooted in
biological autonomy (shaping environment)
 Not just defending organism-environment
boundary (homeostasis), but creating it
(autopoiesis, niche construction)
 Recasting relationship between person and disease:
 Psychosomatics/placebos
 Alternative medicine
 Geriatrics

12.  US spends more but is less healthy than peers
 Must make patient the true customer for HC
 Patient who values health states and determines
medical necessity of health services
 HC has small role in health creation
 May be iatrogenic: clinical, social, cultural
 Iatrogenic health policy undermines pt. agency

13. Patient as Health Care
Chooser (Ch 3-4)
patient autonomy
informed consent to
treatments
Patient as Health
Perceiver (Ch 5-6)
patient-reported outcomes
SRH: self-rated health
Health-Related Quality of
Life (HRQL)
health-state utilities
Patient as Health
Creator (Ch 9-10)
infection resistance
vitality and vitalism
Biological autonomy
Niche construction
Patient as Health
Actor (Ch 7-8)
health behavior
treatment adherence
preventive medicine
shared decision-making
Patient choosing health care
vs.
Patient participation in health care
What is the link between vitality and longevity?
Is self-rated health a state (of biological order)
or a capacity (for ordering the environment)?
FOUR FACETS OF PATIENT AGENCY
Patient supplying values
vs.
Patient supplying facts
Nature of clinical problem
Criteria for effective treatment
How does agency in non-
health behavior domains
produce health benefits?