Living Well with Chronic Living Well with Chronic PainPain

Steve Overman, MD MPHSteve Overman, MD MPHThe Seattle Arthritis ClinicThe Seattle Arthritis Clinic

Northwest Hospital & Medical CenterNorthwest Hospital & Medical Center

DisclosuresDisclosures

• No vested interestsNo vested interests• I brought my back-upI brought my back-up• Contrasting perspectives – public Contrasting perspectives – public

health, PCP, ER doc, health, PCP, ER doc, rheumatologist, insurance medical rheumatologist, insurance medical director, disability advisor, cost-director, disability advisor, cost-containment director, optimist, containment director, optimist, chronic pain & illness manager chronic pain & illness manager …… ……

What’s the evidence?What’s the evidence?

• How should we respond to our How should we respond to our patient’s complaints of pain?patient’s complaints of pain?

• How should we respond if we How should we respond if we perceive our patient manifesting perceive our patient manifesting ‘pain language’ & ‘pain ‘pain language’ & ‘pain behavior’?behavior’?

Your Patient?Your Patient?

One StoryOne Story

• My professorMy professor

• Patient storiesPatient stories

• ‘‘Coaching-ship’Coaching-ship’

• Illness as a Illness as a journeyjourney

• Illness as an Illness as an opportunityopportunity

• Phases that recurPhases that recur

Who are our Patients?Who are our Patients?USA PopulationUSA Population

• Pain is the #1 reason for patients Pain is the #1 reason for patients seeing their doctorseeing their doctor

• 20% of population have chronic pain20% of population have chronic pain• 20% of population have arthritis20% of population have arthritis• Musculoskeletal problems accounts Musculoskeletal problems accounts

for 65% CDC reported disabilityfor 65% CDC reported disability

Katz WA Clin Rheum (2002) Katz WA Clin Rheum (2002) (Supple 1) S2-S4(Supple 1) S2-S4www.cdc.gov/arthritiswww.cdc.gov/arthritis

Pain Behaviors?Pain Behaviors?

• What are they?What are they?

• What influences?What influences?

• What do they mean?What do they mean?

““Living Well”Living Well”

•Is this an important goal for Is this an important goal for youryour care? care?

•What does this mean to you and your patient?

•How do we help patients live well?

How do we help our How do we help our patients ‘Live Well’?patients ‘Live Well’?

•UnderstandUnderstand each patient as a each patient as a personperson

•Treat and teach based on Treat and teach based on their their illness dimensions & illness dimensions & phasephase

•Build a systemBuild a system around you around you for managing chronic illnessfor managing chronic illness

Sir William OslerSir William Osler

““It is more important to know It is more important to know

what sort of patient what sort of patient

has a disease has a disease

than what sort of diseasethan what sort of disease

a patient has.”a patient has.”

Understanding Our Understanding Our Patient’sPatient’s

Preferences & ActionsPreferences & Actions

My OfficeMy Office

• SurveySurvey: : 160 consecutive patients 160 consecutive patients from our community-based, 100% from our community-based, 100% referral practice of rheumatology referral practice of rheumatology were given the one page were given the one page questionnaire asking their interest in questionnaire asking their interest in 12 topics. Patients were not required 12 topics. Patients were not required to complete or sign.to complete or sign.

• Result:Result:Living well with your illness – 75%Living well with your illness – 75%

Managing fatigue - 65%Managing fatigue - 65%

Managing pain - 63%Managing pain - 63%

Why does a person with Why does a person with FMS come to the doctor?FMS come to the doctor?

• Design Design – Comparison of 79 FMS patients to 39 Comparison of 79 FMS patients to 39

community persons with FMS by community persons with FMS by questionnairesquestionnaires

• Assessments - 14 measures that Assessments - 14 measures that produced 6 domains of variables: produced 6 domains of variables: background demographics and pain background demographics and pain duration; psychiatric morbidity; and duration; psychiatric morbidity; and personality, environmental, cognitive, personality, environmental, cognitive, and health status factors.and health status factors.

Kersh BC, .Arthritis Rheum. 2001 Aug;45(4):362-71.Kersh BC, .Arthritis Rheum. 2001 Aug;45(4):362-71.

What ‘predicted’ physician What ‘predicted’ physician visits?visits?

• Predictive VariablesPredictive Variables– High recent stressful events High recent stressful events – Low self-efficacyLow self-efficacy– Negative affect Negative affect – High perceived painHigh perceived pain

• Biology did not predict Biology did not predict – Low resting state functional activity in Low resting state functional activity in

the thalamus and caudate nucleus was the thalamus and caudate nucleus was not influenced by presence or absence of not influenced by presence or absence of above variables, and was similar in both above variables, and was similar in both groups.groups.

“ “It struck me that they didn’t It struck me that they didn’t understand pain”understand pain”

• Patients with chronic musculoskeletal Patients with chronic musculoskeletal pain from a specialist pain clinic.pain from a specialist pain clinic.

• Asked patients about their beliefs and Asked patients about their beliefs and attitudes via in depth interviews ( not attitudes via in depth interviews ( not predefined questionnaires )predefined questionnaires )– Understanding of painUnderstanding of pain– Expectations for providersExpectations for providers– Impacts on livesImpacts on lives

Harding G. Arth Rheum Care Res 2005 Oct; 53(5):691-696. Harding G. Arth Rheum Care Res 2005 Oct; 53(5):691-696.

Pain Patient PerceptionsPain Patient Perceptions

• Unmet expectations of providersUnmet expectations of providers

• Frustrations making sense of pain Frustrations making sense of pain

• Perceptions of spoiled identityPerceptions of spoiled identity

• Difficulties living with pain & Difficulties living with pain & planning for the futureplanning for the future

..

How we make decisions?How we make decisions?

clinical expertise

research evidence patient preferences

“Clinical expertise in the era of evidence-based medicine and patient

choice.”

clinical expertise

research evidence patient preferences

clinical state and circumstances

research evidencepatients’ preferencesand actions

clinical expertise

R. Brian Haynes, etal, McMaster University, Hamilton, Ontario, Canada

ACP J Club. 2002 Mar-Apr;136(2):A11-4.

--->

Clinical CircumstancesClinical Circumstances

•Illness DimensionsIllness Dimensions

•Illness PhaseIllness Phase

Illness Dimensions Illness Dimensions

• BiologicalBiological

• PsychologicalPsychological

• SociologicalSociological

Phases of Chronic IllnessPhases of Chronic Illness

•Crisis Crisis (Getting Sick)(Getting Sick)

•StabilizationStabilization (Being Sick)(Being Sick)

•ResolutionResolution (Grief)(Grief)

•IntegrationIntegration (Living Well)(Living Well)

Jason LA, Fennell PA. J Clin Psychol. 2000 Dec;56(12):1497-508Jason LA, Fennell PA. J Clin Psychol. 2000 Dec;56(12):1497-508

Selak J, Overman S. Selak J, Overman S. You Don’t LOOK SickYou Don’t LOOK Sick. 2005 Haworth. 2005 Haworth

CrisisCrisis

Life full ofLife full of

Stress EventsStress Events

&&

Unmet CareUnmet Care

ExpectationsExpectations

Crisis – “Getting Sick”Crisis – “Getting Sick”

• Medical Medical – Unexplained symptoms & dysfunctionUnexplained symptoms & dysfunction– Diagnosis & treatment Diagnosis & treatment

• Psychological Psychological – Denial, fear, shame, death ideationDenial, fear, shame, death ideation– Provide understanding & hope Provide understanding & hope

• Social Social – Loss of support, isolationLoss of support, isolation– Build a teamBuild a team

Helping Patients not to WorryHelping Patients not to Worry

““I am an old man and have I am an old man and have known a great many known a great many

troubles,troubles,

and most of them never and most of them never happened.”happened.”

Mark TwainMark Twain

StabilizationStabilization

Low confidence Low confidence in inSelf-managementSelf-management

& &

Frustrations Frustrations making sense making sense

of pain of pain

Stabilization – “Being Stabilization – “Being Sick”Sick”

• MedicalMedical– Symptom management Symptom management – Monitoring & adjusting medicationsMonitoring & adjusting medications

• Psychological Psychological – Confusion, searching, rejection of limitations Confusion, searching, rejection of limitations

– Coaching to improve confidence and Coaching to improve confidence and

effectiveness in self-careeffectiveness in self-care

• Social Social – Increased conflict at home & work Increased conflict at home & work – Vocational & marital counseling & assistanceVocational & marital counseling & assistance

““Words are, of course, Words are, of course,

the most powerful drug the most powerful drug used by mankind.”used by mankind.”

Rudyard KiplingRudyard Kipling

Cognitive Behavioral Cognitive Behavioral Therapy Therapy

A willingness to experience A willingness to experience pain and focus on pain and focus on

functioning is better than functioning is better than avoiding activities while avoiding activities while focusing on pain control.focusing on pain control.

McCracken LM. Eur J Pain. 2005 Feb;9(1):69-78.McCracken LM. Eur J Pain. 2005 Feb;9(1):69-78.

Does everyone respond to Does everyone respond to CBT type counseling?CBT type counseling?

• Multidisciplinary trial with Multidisciplinary trial with exercise, education and CBT for exercise, education and CBT for Fibromyalgia patients. Fibromyalgia patients.

• Outcomes Outcomes – Reductions were observed in pain, Reductions were observed in pain,

affective distress, perceived affective distress, perceived disability, and perceived disability, and perceived interference of paininterference of pain

Turk DC, Turk DC, Arthritis Care Res. 1998 Jun;11(3):186-95. Arthritis Care Res. 1998 Jun;11(3):186-95.

Who Responded to CBT?Who Responded to CBT?

YES, someYES, some MEDICALMEDICALAdaptive copersAdaptive copers - those with low - those with low pretreatment levels of affective pretreatment levels of affective distress and disability distress and disability

YES, a lotYES, a lot PSYCHOLOGICPSYCHOLOGICDysfunctionalDysfunctional – those with poor – those with poor coping skills and a high level of coping skills and a high level of pain pain

NONO SOCIOLOGIC SOCIOLOGICInterpersonally distressedInterpersonally distressed - those - those with interpersonal difficultieswith interpersonal difficulties

““Awareness is the first step in healing, Awareness is the first step in healing, for individuals and society.  for individuals and society. 

Sometimes the brain needs to be Sometimes the brain needs to be satisfied satisfied

before the heart begins to open.” before the heart begins to open.”    

Dean Ornish, MDDean Ornish, MD

ResolutionResolution

DepressedDepressed

AnxiousAnxious

& &

Identity CrisisIdentity Crisis

Resolution - Resolution - “Acceptance”“Acceptance”

• MedicalMedical– Worsening symptoms disproportionate to Worsening symptoms disproportionate to

disease indicatorsdisease indicators– Focus on function & depression treatment Focus on function & depression treatment

• Psychological Psychological – Grief - “Can’t Go Home Again” Grief - “Can’t Go Home Again” – Acceptance through finding the “New You” Acceptance through finding the “New You”

• SocialSocial – Separations & Losses, experiences of Separations & Losses, experiences of

stigmatizationstigmatization– Group interaction & supportGroup interaction & support

Acceptance of PainAcceptance of Pain

Acceptance of painAcceptance of pain correlated with a shift correlated with a shift away from a search for a cure and away from a search for a cure and acknowledging that pain may not change.acknowledging that pain may not change.

Acceptance of chronic painAcceptance of chronic pain was associated was associated

with a shift towards non-pain aspects of life.with a shift towards non-pain aspects of life.

Acceptance of painAcceptance of pain correlated with mental correlated with mental well-being but did not associate with well-being but did not associate with physical functioning. physical functioning.

Viane I. Pain. 2003 Nov;106(1-2):65-72. Viane I. Pain. 2003 Nov;106(1-2):65-72.

““We suffer not We suffer not

because we’re in pain. because we’re in pain.

The real suffering The real suffering

is that we feel we are in pain is that we feel we are in pain ALONE.”ALONE.”

Rachel Naomi Remen, MDRachel Naomi Remen, MD

IntegrationIntegration‘‘Learning to Live Well’Learning to Live Well’

High PainHigh Pain

&&

Difficulties Difficulties LivingLiving

&&PlanningPlanningwith pain with pain

Integration – “Living Integration – “Living Well”Well”

• MedicalMedical– Need for comprehensive integration & Need for comprehensive integration &

adjusting medication – up & downadjusting medication – up & down– Rehabilitation & monitoring Rehabilitation & monitoring

• Psychological Psychological – Redefining personal values & a new lifeRedefining personal values & a new life– Life change counseling & personal caringLife change counseling & personal caring

• Social Social – New friends, partner, job, health careNew friends, partner, job, health care– Resources & referralsResources & referrals

““HealingHealing may not be may not be

so much about getting better, so much about getting better,

as about as about letting goletting go

of everything that isn't you of everything that isn't you - all of the expectations, all of the beliefs -- all of the expectations, all of the beliefs -

and and becoming who you arebecoming who you are.”.”

Rachel Naomi Remen, MDRachel Naomi Remen, MD

Build a SystemBuild a System

to helpto helpyouyoumanage manage chronic chronic

illnessillness

OFFICE VISITOFFICE VISITWhat are your goals?What are your goals?

• Getting out quickly?Getting out quickly?• Looking for a procedural opportunity?Looking for a procedural opportunity?• Doing what you enjoy?Doing what you enjoy?• Solving problems and prescribing Solving problems and prescribing

treatments?treatments?• Helping reduce your patient’s pain?Helping reduce your patient’s pain?• Helping your patient achieve her goals?Helping your patient achieve her goals?• Do no harm?Do no harm?• Enhance hope, confidence, acceptance or Enhance hope, confidence, acceptance or

meaning?meaning? • Helping your patient “live well”?Helping your patient “live well”?

Domains & GoalsDomains & Goals

MEDICALMEDICAL PSYCHOPSYCHO SOCIALSOCIAL

I – CRISISI – CRISIS HOPEHOPE

II -II -STABILIZATIONSTABILIZATION

CONFIDENCCONFIDENCEE

III - III - RESOLUTIONRESOLUTION

ACCEPTANCACCEPTANCEE

IV - IV - INTEGRATIONINTEGRATION

MEANINGMEANING

TO YOUTO YOU YOU FOR YOU FOR YOUYOU

YOU & YOU & OTHERSOTHERS

““Patient’s Perspective on Ideal Patient’s Perspective on Ideal Physician Behaviors”Physician Behaviors”

• ConfidentConfident - - assured manner engenders trust and assured manner engenders trust and calmcalm

• EmpatheticEmpathetic – tries to understand what I am feeling– tries to understand what I am feeling

• HumaneHumane – caring, compassionate and kind– caring, compassionate and kind

• PersonalPersonal – – remembers me as an individual remembers me as an individual

• ForthrightForthright – tells me with plain language – tells me with plain language

• RespectfulRespectful – takes me seriously and lets me – takes me seriously and lets me participateparticipate

• ThoroughThorough – is conscientious and persistent– is conscientious and persistent

Bendapudi N., Mayo Clin Proc. March 2006; 81(3):338-344

Build a SystemBuild a System

Build a TeamBuild a Team

Your Behavior Your Behavior to to

Change BehaviorChange Behavior

• ASSESSASSESS - Pre-visit form- Pre-visit form• ADVISEADVISE - Discharge form - Discharge form (to me)(to me)

• AGREEAGREE - Menu of options - Menu of options (for (for me)me)

• ASSISTASSIST - Nurse visits- Nurse visits

• ARRANGEARRANGE - Referral data-base- Referral data-base

How confident are you in managing How confident are you in managing your health problemsyour health problems??

Not al all 0---2---4---6---8---10 CompletelyNot al all 0---2---4---6---8---10 Completely

Crossing the Quality Chasm: A New Crossing the Quality Chasm: A New Health System for the 21Health System for the 21stst Century Century

National Academy Press: Institute of Medicine. 2001National Academy Press: Institute of Medicine. 2001

Rules to Redesign and Improve Health Care:Rules to Redesign and Improve Health Care:

1.1. Care based onCare based on continuous healing relationshipscontinuous healing relationships..2.2. Customization based onCustomization based on patient needs and patient needs and

valuesvalues..3.3. TheThe patient as the source of controlpatient as the source of control..4.4. Shared knowledgeShared knowledge and free flow of informationand free flow of information..5.5. Evidenced-based decision making.Evidenced-based decision making.6.6. Safety as a system priority. Safety as a system priority. 7.7. The need for transparency.The need for transparency.8.8. Anticipation of needs.Anticipation of needs.9.9. Continuous decrease in waste.Continuous decrease in waste.10.10. Cooperation among clinicians. Cooperation among clinicians.

Patient-CenteredPatient-CenteredChronic Illness Care Chronic Illness Care

Systems Systems World Wide Pursuing Perfection World Wide Pursuing Perfection

www.WWPP.orgwww.WWPP.org

Improving Chronic Illness CareImproving Chronic Illness Carewww.ImprovingChronicCare.orgwww.ImprovingChronicCare.org

““The Bell Curve”The Bell Curve” New YorkerNew Yorker (November 23, 2004)(November 23, 2004)

What is the meaning of our What is the meaning of our patient’s pain behavior? patient’s pain behavior?

How do we respond?How do we respond?

Help your patient “Live Help your patient “Live Well”Well”

bybyunderstanding the understanding the dimensionsdimensions

of his illness of his illness

and in what and in what phase of recoveryphase of recovery

he is in, he is in,

and then use the 5 A’s of and then use the 5 A’s of

behavior changebehavior change

to her manage better.to her manage better.