Health: objective, subjective, or other?

Mark Sullivan, MD, PhD
Psychiatry and Behavioral Sciences
Anesthesiology and Pain Medicine
Bioethics and Humanities
Difficulties with health as a scientific object and clinical goal
Objective health: the clinical argument and the policy argument
Chronic disease: epidemiological and epistemological transition
Subjective health: “outcomes that matter to patients”
Health-related quality of life (HRQL): adds subjective to objective
HRQL as failed transitional concept
Health: as capacity for meaningful action, niche construction
Agenda
Scientific object
• Not observable with clear necessary and sufficient criteria
• WHO definition expands to include all well-being
• Biological science cannot explain self-healing or self-movement
Clinical goal
• Disappears as a concern when it is present; from barrier to window onto life
• Health, like autonomy, is difficult to deliver to another (but parenting)
• Explicit, anxious pursuit is often self-defeating (like happiness)
• Health is a basic, but instrumental good.
Health as scientific object and clinical goal
Objective health- the clinical case
• Until 1800, disease is the sum of experienced symptoms and observed signs
• Around 1800, the autopsy is integrated into hospital care, so tissue diagnosis
becomes the gold-standard for clinical diagnosis
• This means that medical diagnosis now can completely bypass patient
experience of illness. Dead body more knowable than the living body.
• This grants medical science a stable scientific object and medical practice a
focus distinct from poverty, dysfunction and suffering
• Scientific physician becomes most authoritative judge of the presence or
absence of disease, and therefore, health
• (Foucault, The Birth of the Clinic)
Objective health: clinical arguments
Objective health- the policy case
• After the French Revolutionaries declared a right to health care for all citizens,
some triage principle was necessary to delimit this right
• Health services cease to be focused on deserving patients (religious) became
focused on patients with curable disease (secular)
• Hospitals, public health agencies, medical training, and health insurance come
to be organized according to objective disease diagnoses
Objective health: policy arguments
Public health traditionally measured in objective mortality and morbidity
But ‘epidemiologic transition’ from acute/infectious to chronic conditions has
occurred in industrialized countries.
Few cures are achieved for chronic and degenerative disease, so the effect of
medical care must be gauged in some other way that better captures the
burden of chronic disease for both countries and individuals.
Chronic disease: epidemiological transition
Because medicine is interested in new types of health, it must also be
interested in new types of scientific evidence concerning health
Laboratory and physical exam measures are inadequate to capture important
effects of chronic disease and its treatments on patients.
• 1949 Karnofsky Index provides ranking of cancer patients’ physical functioning
• Followed by clinimetrics and clinical epidemiology to support clinical decisions where not
enough guidance from diagnosis and pathophysiology
• Weak associations between objective disease severity and severity of symptoms, functional
impairment, loss of well-being
Need to ask the patient directly: how are you doing?
Chronic disease: epistemological transition
Manifesto: Paul Ellwood’s 1988 article in The New England Journal of Medicine sought to alert
physicians to a “technology of patient experience” by which they were going to be
evaluated—like it or not.
“The intricate machinery of our health care system can no longer grasp the threads of
experience....Too often, payers, physicians, and health care executives do not share common
insights into the life of the patient....The problem is our inability to measure and understand the
effect of the choices of patients, payers, and physicians on the patient’s aspirations for a better
quality of life. [my emphasis] 31
Without explicit scientific argument, Ellwood shifts the object of medical science from the
patient’s body to the patient’s life.
Subjective health:
“outcomes that matter to patients”
HRQL accepts “perspective” as unavoidable in clinical medical science. It thus rejects the
ideal of completely objective medical measurement.
Previously, the foremost value in medical outcome measurement was rigor.The most
rigorous or “hardest” outcomes, with the lowest possibility of bias, were the most favored.
But the need to measure chronic disease burden shifts attention to an entirely different
value: outcomes that matter to patients.
Now patient-reported outcomes are valid not despite being subjective, they are valid because
they are subjective.The link with the patient’s perspective now adds rather than detracts
from their validity.
Health-related quality of life (HRQL):
adds subjective to objective health measures
HRQL usually seen as patient experience of an objectively defined health state but:
Self-rated health is not secondary to objective health
• Causal: SRH independently predicts mortality, hospitalization, disability, complications
• Conceptual: Disease discovery follows illness; cannot sort malign vs benign variation in tissue
structure w/o pt.
• Experiential: Response shifts show how different illnesses arise from the same disease
Problems with HRQL
as a measure of health
• For as long as a decade, SRH predicts mortality, hospitalization, disability,
complications, after controlling for observed health indices and risks
 Meta-analysis of 22 studies: increased mortality vs excellent SRH
(DeSalvo, 2006)
 23% “good”, 44% “fair”, 92% “poor” SRH.
 Adjusted for comorbid illness, functional status, cognitive status, and
depression
 Increased in all gender and ethnic subgroups
Self-rated health is not simply caused
by objective health
• “Thus it is first and foremost because men feel sick that a medicine exists. It is
only secondarily that men know, because medicine exists, in what way they are
sick.” – Georges Canguilhem
• Disease discovery follows illness report; first dysfunction, then causes of
dysfunction
• Scientist cannot sort malign vs benign variation in cells or organs without
patient report, context.
• Examples: tongue rolling, bulging/herniated discs
Pathological diagnosis begins with patient report,
so cannot be purely objective
• “Response shift” or “disability paradox”: marked improvements in HRQL for
SCI patients in 1 yr.
• This adaptation occurs in most chronic illnesses
• “Illness battered its victim until they got along with one another: the senses
were diminished, there were lapses in consciousness, a merciful self-narcosis
set in--all means by which nature allowed the organism to find relief, to adapt
mentally and morally to its condition, and which the healthy person naively
forgot to take into account.”Thomas Mann, The Magic Mountain
Over time, the same disease causes different
illnesses
Failure of objective model (cause-focused)
• No broken part can identified in most cases
• Broken parts also found in many with no LBP
• Repair of broken part often does not relieve pain
Failure of subjective model (symptom-focused)
• Seeks to reduce pain intensity to improve health
• Has led to widespread opioid use, abuse, overdose
• Reducing chronic pain intensity often does not improve function or
ability to move life forward
Example: the failure of objective and subjective
models of health in CLBP
Health is not a state of body or of mind, but the capacity for meaningful action
• Consider older persons who are thriving –e.g.,WaltWhitman
• Health and disease are not opposites and do not exclude each other
Health is the ability to do things of value
• It is a form of capability and more basic than welfare or well-being (Sen)
• Similar to the organism’s capacity for niche construction (Lewontin)
Amartya Sen: impossible to understand the well-being of persons without understanding
their agency -- both a means to well-being and an intrinsically valuable component of it.
Health as capacity for action
neither objective nor subjective
Available from Oxford
(oup.com) or Amazon
Table of Contents
Introduction
1] Patient-Centered Medicine—who, what, and how?
2] Patient-Centered Care or Patient-Centered Health?
Beyond bioethics
3] Respecting and promoting autonomy in research, end-of-life care, and chronic illness care
4] Escaping the autonomy vs objectivity trap by re-personalizing the clinical problem
Health perceived by the patient
5] Looking Beyond Health-related Quality of Life
6] Health as the Capacity for Action
Health produced by the patient
7] On the role of health behavior in 21st Century health
8] Advancing from activated patient to autonomous patient
Health despite disease
9] Finding health between personal and disease processes
10] Seeking the roots of health and action in biological autonomy
Patient-centered health policy
11] Make the patient the true customer for health care
12] Patient-centered health is produced by patients
1 of 16

Recommended

Deciding When Hospice is Needed by
Deciding When Hospice is NeededDeciding When Hospice is Needed
Deciding When Hospice is NeededVITAS Healthcare
7.5K views53 slides
Adapting to chronic illness by
Adapting to chronic illnessAdapting to chronic illness
Adapting to chronic illnessAndré Samson
2.9K views25 slides
CBT in HF Final by
CBT in HF FinalCBT in HF Final
CBT in HF FinalJoshua LaDeau
188 views12 slides
CONCEPT OF DISEASE by
CONCEPT OF DISEASECONCEPT OF DISEASE
CONCEPT OF DISEASERAHUL DANDEKAR
38.2K views109 slides
Reducing Readmissions and Lengths of Stay by
Reducing Readmissions and Lengths of StayReducing Readmissions and Lengths of Stay
Reducing Readmissions and Lengths of StayVITAS Healthcare
1.8K views65 slides

More Related Content

What's hot

Psychological problems patients in critical care unit by
Psychological problems  patients  in critical care unitPsychological problems  patients  in critical care unit
Psychological problems patients in critical care unitDr. Muhammad Arsyad Subu, MSN, PhD
12.1K views34 slides
Chronic illness by
Chronic illness Chronic illness
Chronic illness ANCYBS
2.3K views49 slides
Chronic disease management in the older adult by
Chronic disease management in the older adult Chronic disease management in the older adult
Chronic disease management in the older adult Stephanie Thompson
3.6K views21 slides
Quality of life and comorbid anxiety disorder in persons with schizophrenia, ... by
Quality of life and comorbid anxiety disorder in persons with schizophrenia, ...Quality of life and comorbid anxiety disorder in persons with schizophrenia, ...
Quality of life and comorbid anxiety disorder in persons with schizophrenia, ...iosrphr_editor
369 views8 slides
Chronic illness ppt by
Chronic illness pptChronic illness ppt
Chronic illness pptBrad McAllister
13.8K views12 slides
Dying Matters: Feel the fear, and have the conversation anyway by
Dying Matters: Feel the fear, and have the conversation anywayDying Matters: Feel the fear, and have the conversation anyway
Dying Matters: Feel the fear, and have the conversation anywayNHSRobBenson
699 views19 slides

What's hot(19)

Chronic illness by ANCYBS
Chronic illness Chronic illness
Chronic illness
ANCYBS2.3K views
Chronic disease management in the older adult by Stephanie Thompson
Chronic disease management in the older adult Chronic disease management in the older adult
Chronic disease management in the older adult
Stephanie Thompson3.6K views
Quality of life and comorbid anxiety disorder in persons with schizophrenia, ... by iosrphr_editor
Quality of life and comorbid anxiety disorder in persons with schizophrenia, ...Quality of life and comorbid anxiety disorder in persons with schizophrenia, ...
Quality of life and comorbid anxiety disorder in persons with schizophrenia, ...
iosrphr_editor369 views
Dying Matters: Feel the fear, and have the conversation anyway by NHSRobBenson
Dying Matters: Feel the fear, and have the conversation anywayDying Matters: Feel the fear, and have the conversation anyway
Dying Matters: Feel the fear, and have the conversation anyway
NHSRobBenson699 views
Not Only Depressed. A Pilot Study on Quality of Life of Women with Urinary In... by inventionjournals
Not Only Depressed. A Pilot Study on Quality of Life of Women with Urinary In...Not Only Depressed. A Pilot Study on Quality of Life of Women with Urinary In...
Not Only Depressed. A Pilot Study on Quality of Life of Women with Urinary In...
JSPTR-Volume-8-Number-5-Article-3 by Audrey Mensen
JSPTR-Volume-8-Number-5-Article-3JSPTR-Volume-8-Number-5-Article-3
JSPTR-Volume-8-Number-5-Article-3
Audrey Mensen116 views
Nursing and Rehabilitation of Residents of Old Age Homes by Enoch Snowden
Nursing and Rehabilitation of Residents of Old Age HomesNursing and Rehabilitation of Residents of Old Age Homes
Nursing and Rehabilitation of Residents of Old Age Homes
Enoch Snowden689 views
Health and disease lecture 2021-Class by Tauseef Jawaid
Health and disease lecture 2021-ClassHealth and disease lecture 2021-Class
Health and disease lecture 2021-Class
Tauseef Jawaid431 views
Chronic And Acute Illness Lecture by cclemm1
Chronic And Acute Illness LectureChronic And Acute Illness Lecture
Chronic And Acute Illness Lecture
cclemm135.2K views
End stage COPD - Meeting Patients' Challenges by VITAS Healthcare
End stage COPD - Meeting Patients' ChallengesEnd stage COPD - Meeting Patients' Challenges
End stage COPD - Meeting Patients' Challenges
VITAS Healthcare2.4K views
CARING THE TERMINAL ILL by ANCYBS
CARING THE TERMINAL ILLCARING THE TERMINAL ILL
CARING THE TERMINAL ILL
ANCYBS1.3K views
IFM: The New Paradigm of Medicine by Augustin Bralley
IFM: The New Paradigm of MedicineIFM: The New Paradigm of Medicine
IFM: The New Paradigm of Medicine
Augustin Bralley2.5K views
Consultation liaison-psychiatry-models-and-processes by ehab elbaz
Consultation liaison-psychiatry-models-and-processesConsultation liaison-psychiatry-models-and-processes
Consultation liaison-psychiatry-models-and-processes
ehab elbaz330 views

Similar to Health: objective, subjective, or other?

Is respecting patient autonomy enough or must we promote patient autonomy as ... by
Is respecting patient autonomy enough or must we promote patient autonomy as ...Is respecting patient autonomy enough or must we promote patient autonomy as ...
Is respecting patient autonomy enough or must we promote patient autonomy as ...Mark Sullivan
283 views37 slides
HEALTH PSYCHOLOGY slides.pptx by
HEALTH PSYCHOLOGY slides.pptxHEALTH PSYCHOLOGY slides.pptx
HEALTH PSYCHOLOGY slides.pptxMahnoorHashmi
303 views26 slides
The Patient As Agent: precis by
The Patient As Agent: precisThe Patient As Agent: precis
The Patient As Agent: precisMark Sullivan
128 views13 slides
Introduction to Health.pptx by
Introduction to Health.pptxIntroduction to Health.pptx
Introduction to Health.pptxDrPreetiThakurChouha
10 views95 slides
unit1-introdutiontohealth-160428103929.pdf by
unit1-introdutiontohealth-160428103929.pdfunit1-introdutiontohealth-160428103929.pdf
unit1-introdutiontohealth-160428103929.pdfjesudiannath1
15 views95 slides
Unit 1 introdution to health by
Unit 1   introdution to healthUnit 1   introdution to health
Unit 1 introdution to healthvruti patel
29.6K views95 slides

Similar to Health: objective, subjective, or other?(20)

Is respecting patient autonomy enough or must we promote patient autonomy as ... by Mark Sullivan
Is respecting patient autonomy enough or must we promote patient autonomy as ...Is respecting patient autonomy enough or must we promote patient autonomy as ...
Is respecting patient autonomy enough or must we promote patient autonomy as ...
Mark Sullivan283 views
HEALTH PSYCHOLOGY slides.pptx by MahnoorHashmi
HEALTH PSYCHOLOGY slides.pptxHEALTH PSYCHOLOGY slides.pptx
HEALTH PSYCHOLOGY slides.pptx
MahnoorHashmi303 views
The Patient As Agent: precis by Mark Sullivan
The Patient As Agent: precisThe Patient As Agent: precis
The Patient As Agent: precis
Mark Sullivan128 views
unit1-introdutiontohealth-160428103929.pdf by jesudiannath1
unit1-introdutiontohealth-160428103929.pdfunit1-introdutiontohealth-160428103929.pdf
unit1-introdutiontohealth-160428103929.pdf
jesudiannath115 views
Unit 1 introdution to health by vruti patel
Unit 1   introdution to healthUnit 1   introdution to health
Unit 1 introdution to health
vruti patel29.6K views
Ncm 100 fundamentals of nursing practice by znel
Ncm 100 fundamentals of nursing practiceNcm 100 fundamentals of nursing practice
Ncm 100 fundamentals of nursing practice
znel2.8K views
Chapter 1 Introduction to Health Psychology.pdf by Ayesha Yaqoob
Chapter 1 Introduction to Health Psychology.pdfChapter 1 Introduction to Health Psychology.pdf
Chapter 1 Introduction to Health Psychology.pdf
Ayesha Yaqoob697 views
concepts of health copy by naveedrcn
 concepts of health   copy concepts of health   copy
concepts of health copy
naveedrcn1.5K views
concepts of health copy by naveedrcn
 concepts of health   copy concepts of health   copy
concepts of health copy
naveedrcn749 views
Concept of health and disease by sirjana Tiwari
Concept of health and diseaseConcept of health and disease
Concept of health and disease
sirjana Tiwari2.5K views
Sociology 2 concept of health and disease by monaaboserea
Sociology 2 concept of health and diseaseSociology 2 concept of health and disease
Sociology 2 concept of health and disease
monaaboserea874 views
Advancing from activated patient to autonomous patient in chronic illness care by Mark Sullivan
Advancing from activated patient to autonomous patient in chronic illness careAdvancing from activated patient to autonomous patient in chronic illness care
Advancing from activated patient to autonomous patient in chronic illness care
Mark Sullivan189 views
Ethical, moral and legal issues in oncology by Manali Solanki
Ethical, moral and legal issues in oncologyEthical, moral and legal issues in oncology
Ethical, moral and legal issues in oncology
Manali Solanki7.3K views
Dr. Barry White, former HSE National Director, Clinical Strategy and Programmes by Investnet
Dr. Barry White, former HSE National Director, Clinical Strategy and ProgrammesDr. Barry White, former HSE National Director, Clinical Strategy and Programmes
Dr. Barry White, former HSE National Director, Clinical Strategy and Programmes
Investnet2.4K views
Trw4ch14pptrevise 151027023348-lva1-app6891 by Cleophas Rwema
Trw4ch14pptrevise 151027023348-lva1-app6891Trw4ch14pptrevise 151027023348-lva1-app6891
Trw4ch14pptrevise 151027023348-lva1-app6891
Cleophas Rwema21 views

Recently uploaded

Ros Wilson - Future of Ageing 2023 by
Ros Wilson - Future of Ageing 2023Ros Wilson - Future of Ageing 2023
Ros Wilson - Future of Ageing 2023ILCUK
32 views1 slide
communication and nurse patient relationship by Tamanya Samui.pdf by
communication and nurse patient relationship by Tamanya Samui.pdfcommunication and nurse patient relationship by Tamanya Samui.pdf
communication and nurse patient relationship by Tamanya Samui.pdfTamanyaSamui1
44 views32 slides
SHS.320.Lec-2..pptx by
SHS.320.Lec-2..pptxSHS.320.Lec-2..pptx
SHS.320.Lec-2..pptxzainabmasood22
17 views40 slides
Calcutta Clinical Course - Allen College of Homoeopathy by
Calcutta Clinical Course - Allen College of HomoeopathyCalcutta Clinical Course - Allen College of Homoeopathy
Calcutta Clinical Course - Allen College of HomoeopathyAllen College
103 views32 slides
CCDI Kibbe Wake Forest University Dec 2023.pptx by
CCDI Kibbe Wake Forest University Dec 2023.pptxCCDI Kibbe Wake Forest University Dec 2023.pptx
CCDI Kibbe Wake Forest University Dec 2023.pptxWarren Kibbe
20 views51 slides
Nidanarthakara Roga.pptx by
Nidanarthakara Roga.pptxNidanarthakara Roga.pptx
Nidanarthakara Roga.pptxAkshay Shetty
77 views23 slides

Recently uploaded(20)

Ros Wilson - Future of Ageing 2023 by ILCUK
Ros Wilson - Future of Ageing 2023Ros Wilson - Future of Ageing 2023
Ros Wilson - Future of Ageing 2023
ILCUK32 views
communication and nurse patient relationship by Tamanya Samui.pdf by TamanyaSamui1
communication and nurse patient relationship by Tamanya Samui.pdfcommunication and nurse patient relationship by Tamanya Samui.pdf
communication and nurse patient relationship by Tamanya Samui.pdf
TamanyaSamui144 views
Calcutta Clinical Course - Allen College of Homoeopathy by Allen College
Calcutta Clinical Course - Allen College of HomoeopathyCalcutta Clinical Course - Allen College of Homoeopathy
Calcutta Clinical Course - Allen College of Homoeopathy
Allen College103 views
CCDI Kibbe Wake Forest University Dec 2023.pptx by Warren Kibbe
CCDI Kibbe Wake Forest University Dec 2023.pptxCCDI Kibbe Wake Forest University Dec 2023.pptx
CCDI Kibbe Wake Forest University Dec 2023.pptx
Warren Kibbe20 views
NeuroGASTRO-2023-Programme.pdf by OanaTimofte3
NeuroGASTRO-2023-Programme.pdfNeuroGASTRO-2023-Programme.pdf
NeuroGASTRO-2023-Programme.pdf
OanaTimofte313 views
INTRODUCTION TO PHARMACEUTICAL VALIDATION SCOPE and MERITS OF VALIDATION.pptx by ABG
INTRODUCTION TO PHARMACEUTICAL VALIDATION SCOPE and MERITS OF VALIDATION.pptxINTRODUCTION TO PHARMACEUTICAL VALIDATION SCOPE and MERITS OF VALIDATION.pptx
INTRODUCTION TO PHARMACEUTICAL VALIDATION SCOPE and MERITS OF VALIDATION.pptx
ABG122 views
Asthalin Inhaler (Generic Albuterol Sulfate Inhaler) by The Swiss Pharmacy
Asthalin Inhaler (Generic Albuterol Sulfate Inhaler) Asthalin Inhaler (Generic Albuterol Sulfate Inhaler)
Asthalin Inhaler (Generic Albuterol Sulfate Inhaler)
ICH AND WHO GUIDELINES FOR VALIDATION OF EQUIPMENTS.pptx by ABG
ICH AND WHO GUIDELINES FOR VALIDATION OF EQUIPMENTS.pptxICH AND WHO GUIDELINES FOR VALIDATION OF EQUIPMENTS.pptx
ICH AND WHO GUIDELINES FOR VALIDATION OF EQUIPMENTS.pptx
ABG73 views
Western Blotting (Protein Separation technique) .pptx by Ankit Mehra
Western Blotting (Protein Separation technique) .pptxWestern Blotting (Protein Separation technique) .pptx
Western Blotting (Protein Separation technique) .pptx
Ankit Mehra55 views
Fetal and Neonatal Circulation - MBBS, Gandhi medical College Hyderabad by Swetha rani Savala
Fetal and Neonatal Circulation - MBBS, Gandhi medical College Hyderabad Fetal and Neonatal Circulation - MBBS, Gandhi medical College Hyderabad
Fetal and Neonatal Circulation - MBBS, Gandhi medical College Hyderabad
Chronic Inflammatory Demyelinating Polyradiculoneuropathy, CIDP by MohamadAlhes
Chronic Inflammatory Demyelinating Polyradiculoneuropathy, CIDPChronic Inflammatory Demyelinating Polyradiculoneuropathy, CIDP
Chronic Inflammatory Demyelinating Polyradiculoneuropathy, CIDP
MohamadAlhes122 views

Health: objective, subjective, or other?

  • 1. Mark Sullivan, MD, PhD Psychiatry and Behavioral Sciences Anesthesiology and Pain Medicine Bioethics and Humanities
  • 2. Difficulties with health as a scientific object and clinical goal Objective health: the clinical argument and the policy argument Chronic disease: epidemiological and epistemological transition Subjective health: “outcomes that matter to patients” Health-related quality of life (HRQL): adds subjective to objective HRQL as failed transitional concept Health: as capacity for meaningful action, niche construction Agenda
  • 3. Scientific object • Not observable with clear necessary and sufficient criteria • WHO definition expands to include all well-being • Biological science cannot explain self-healing or self-movement Clinical goal • Disappears as a concern when it is present; from barrier to window onto life • Health, like autonomy, is difficult to deliver to another (but parenting) • Explicit, anxious pursuit is often self-defeating (like happiness) • Health is a basic, but instrumental good. Health as scientific object and clinical goal
  • 4. Objective health- the clinical case • Until 1800, disease is the sum of experienced symptoms and observed signs • Around 1800, the autopsy is integrated into hospital care, so tissue diagnosis becomes the gold-standard for clinical diagnosis • This means that medical diagnosis now can completely bypass patient experience of illness. Dead body more knowable than the living body. • This grants medical science a stable scientific object and medical practice a focus distinct from poverty, dysfunction and suffering • Scientific physician becomes most authoritative judge of the presence or absence of disease, and therefore, health • (Foucault, The Birth of the Clinic) Objective health: clinical arguments
  • 5. Objective health- the policy case • After the French Revolutionaries declared a right to health care for all citizens, some triage principle was necessary to delimit this right • Health services cease to be focused on deserving patients (religious) became focused on patients with curable disease (secular) • Hospitals, public health agencies, medical training, and health insurance come to be organized according to objective disease diagnoses Objective health: policy arguments
  • 6. Public health traditionally measured in objective mortality and morbidity But ‘epidemiologic transition’ from acute/infectious to chronic conditions has occurred in industrialized countries. Few cures are achieved for chronic and degenerative disease, so the effect of medical care must be gauged in some other way that better captures the burden of chronic disease for both countries and individuals. Chronic disease: epidemiological transition
  • 7. Because medicine is interested in new types of health, it must also be interested in new types of scientific evidence concerning health Laboratory and physical exam measures are inadequate to capture important effects of chronic disease and its treatments on patients. • 1949 Karnofsky Index provides ranking of cancer patients’ physical functioning • Followed by clinimetrics and clinical epidemiology to support clinical decisions where not enough guidance from diagnosis and pathophysiology • Weak associations between objective disease severity and severity of symptoms, functional impairment, loss of well-being Need to ask the patient directly: how are you doing? Chronic disease: epistemological transition
  • 8. Manifesto: Paul Ellwood’s 1988 article in The New England Journal of Medicine sought to alert physicians to a “technology of patient experience” by which they were going to be evaluated—like it or not. “The intricate machinery of our health care system can no longer grasp the threads of experience....Too often, payers, physicians, and health care executives do not share common insights into the life of the patient....The problem is our inability to measure and understand the effect of the choices of patients, payers, and physicians on the patient’s aspirations for a better quality of life. [my emphasis] 31 Without explicit scientific argument, Ellwood shifts the object of medical science from the patient’s body to the patient’s life. Subjective health: “outcomes that matter to patients”
  • 9. HRQL accepts “perspective” as unavoidable in clinical medical science. It thus rejects the ideal of completely objective medical measurement. Previously, the foremost value in medical outcome measurement was rigor.The most rigorous or “hardest” outcomes, with the lowest possibility of bias, were the most favored. But the need to measure chronic disease burden shifts attention to an entirely different value: outcomes that matter to patients. Now patient-reported outcomes are valid not despite being subjective, they are valid because they are subjective.The link with the patient’s perspective now adds rather than detracts from their validity. Health-related quality of life (HRQL): adds subjective to objective health measures
  • 10. HRQL usually seen as patient experience of an objectively defined health state but: Self-rated health is not secondary to objective health • Causal: SRH independently predicts mortality, hospitalization, disability, complications • Conceptual: Disease discovery follows illness; cannot sort malign vs benign variation in tissue structure w/o pt. • Experiential: Response shifts show how different illnesses arise from the same disease Problems with HRQL as a measure of health
  • 11. • For as long as a decade, SRH predicts mortality, hospitalization, disability, complications, after controlling for observed health indices and risks  Meta-analysis of 22 studies: increased mortality vs excellent SRH (DeSalvo, 2006)  23% “good”, 44% “fair”, 92% “poor” SRH.  Adjusted for comorbid illness, functional status, cognitive status, and depression  Increased in all gender and ethnic subgroups Self-rated health is not simply caused by objective health
  • 12. • “Thus it is first and foremost because men feel sick that a medicine exists. It is only secondarily that men know, because medicine exists, in what way they are sick.” – Georges Canguilhem • Disease discovery follows illness report; first dysfunction, then causes of dysfunction • Scientist cannot sort malign vs benign variation in cells or organs without patient report, context. • Examples: tongue rolling, bulging/herniated discs Pathological diagnosis begins with patient report, so cannot be purely objective
  • 13. • “Response shift” or “disability paradox”: marked improvements in HRQL for SCI patients in 1 yr. • This adaptation occurs in most chronic illnesses • “Illness battered its victim until they got along with one another: the senses were diminished, there were lapses in consciousness, a merciful self-narcosis set in--all means by which nature allowed the organism to find relief, to adapt mentally and morally to its condition, and which the healthy person naively forgot to take into account.”Thomas Mann, The Magic Mountain Over time, the same disease causes different illnesses
  • 14. Failure of objective model (cause-focused) • No broken part can identified in most cases • Broken parts also found in many with no LBP • Repair of broken part often does not relieve pain Failure of subjective model (symptom-focused) • Seeks to reduce pain intensity to improve health • Has led to widespread opioid use, abuse, overdose • Reducing chronic pain intensity often does not improve function or ability to move life forward Example: the failure of objective and subjective models of health in CLBP
  • 15. Health is not a state of body or of mind, but the capacity for meaningful action • Consider older persons who are thriving –e.g.,WaltWhitman • Health and disease are not opposites and do not exclude each other Health is the ability to do things of value • It is a form of capability and more basic than welfare or well-being (Sen) • Similar to the organism’s capacity for niche construction (Lewontin) Amartya Sen: impossible to understand the well-being of persons without understanding their agency -- both a means to well-being and an intrinsically valuable component of it. Health as capacity for action neither objective nor subjective
  • 16. Available from Oxford (oup.com) or Amazon Table of Contents Introduction 1] Patient-Centered Medicine—who, what, and how? 2] Patient-Centered Care or Patient-Centered Health? Beyond bioethics 3] Respecting and promoting autonomy in research, end-of-life care, and chronic illness care 4] Escaping the autonomy vs objectivity trap by re-personalizing the clinical problem Health perceived by the patient 5] Looking Beyond Health-related Quality of Life 6] Health as the Capacity for Action Health produced by the patient 7] On the role of health behavior in 21st Century health 8] Advancing from activated patient to autonomous patient Health despite disease 9] Finding health between personal and disease processes 10] Seeking the roots of health and action in biological autonomy Patient-centered health policy 11] Make the patient the true customer for health care 12] Patient-centered health is produced by patients