Goal: to convince you that chronic illness care needs the concept, not just of the activated patient, but the autonomous patient. The patient is not just a substitute for the provider in providing self-management of chronic illness, but is a person threatened by this illness, with his own identity and goals.
The Patient As Agent: precis
Mark Sullivan, MD PhD
Psychiatry and Behavioral Sciences
Anesthesiology and Pain Medicine
Bioethics and Humanities
Patient agency is both the primary means
and primary end of health care for chronic
“the faculty of an agent or of acting; active
working or operation: action, activity.”
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?
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
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
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
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
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
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.
Activating patient for self-management is
crucial to improve chronic illness outcomes:
medications, exercise, stress management, diet
Maintaining behavior change is most difficult
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
Pt action: means to healthessence 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:
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
Patient as Health Care
Chooser (Ch 3-4)
informed consent to
Patient as Health
Perceiver (Ch 5-6)
SRH: self-rated health
Health-Related Quality of
Patient as Health
Creator (Ch 9-10)
vitality and vitalism
Patient as Health
Actor (Ch 7-8)
Patient choosing health care
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
Patient supplying facts
Nature of clinical problem
Criteria for effective treatment
How does agency in non-
health behavior domains
produce health benefits?