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The Patient As Agent: precis

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

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Mark Sullivan, MD PhD
University ofWashington
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
illness.
 OED: Agency
 “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
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The Patient As Agent: precis

  • 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?

Editor's Notes

  1. 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.