Person-Centered Mental Health Care Moving Beyond the Rhetoric and Values of Recovery in Everyday Practice Neal Adams MD MPH Deputy Director California.

Person-Centered Mental Health Care

Moving Beyond the Rhetoric and Values of Recovery

in Everyday Practice

Neal Adams MD MPHNeal Adams MD MPHDeputy DirectorDeputy Director

California Institute of Mental HealthCalifornia Institute of Mental Health

PleonasmPleonasm

NOUN:

1a. The use of more words than are required to express an idea; redundancy. b. An instance of pleonasm.

2. A superfluous word or phrase. ETYMOLOGY:

Late Latin pleonasmus, from Greek pleonasmos, from pleonazein, to be excessive, from ple

Neal Adams MD Copyright 2008

Kuhn/Paradigm ShiftKuhn/Paradigm Shift

true paradigm shift new model for understanding

and experiencing relationship between consumer and provider

challenges earlier precepts can only supplant old model

Mental health recovery is a journey of healing Mental health recovery is a journey of healing and transformation enabling a person with a and transformation enabling a person with a

mental health problem to live a meaningful life mental health problem to live a meaningful life in a community of his or her choice while in a community of his or her choice while

striving to achieve his or her full potential. striving to achieve his or her full potential.

Traditional vs. RecoveryTraditional vs. Recovery

Recovery-Oriented person-directed strengths-based skill acquisition collaboration quality of life community-based empowerment/

choices least restrictive preventative/wellness

Traditional practitioner-based problem- based professional

dominance acute treatment cure/amelioration facility-based dependence episodic reactive

Managing the Illness…Managing the Illness…Focusing on DeficitsFocusing on Deficits

Promoting Recovery… Promoting Recovery… Building StrengthsBuilding Strengths

Decreased symptoms/Clinical stabilityDecreased symptoms/Clinical stability

Better judgmentBetter judgment

Increased Insight…accepts illnessIncreased Insight…accepts illness

Follows teamFollows team’’s recommendationss recommendations

Compliance with treatmentCompliance with treatment

Decreased hospitalizationDecreased hospitalization

AbstinentAbstinent

MotivatedMotivated

Increased functioningIncreased functioning

Psychiatric StabilityPsychiatric Stability

Healthy relationships/socializationHealthy relationships/socialization

Use services regularly/engagementUse services regularly/engagement

Cognitive functioningCognitive functioning

Realistic expectationsRealistic expectations

Attends the job program/clubhouse, etc.Attends the job program/clubhouse, etc.

Life worth livingLife worth living

A spiritual connection to God/others/selfA spiritual connection to God/others/self

A real job, financial independenceA real job, financial independence

Being a good mom…dad…daughterBeing a good mom…dad…daughter

FriendsFriends

FunFun

NatureNature

MusicMusic

PetsPets

A home to call my ownA home to call my own

Love…intimacy…sexLove…intimacy…sex

Having hope for the futureHaving hope for the future

JoyJoy

Giving back…being neededGiving back…being needed

LearningLearning

Treating Acute IllnessesTreating Acute Illnesses

Professionals as experts diagnosing illnesses and ordering treatment

Patient provides history and complies with treatment

Life is put on hold while in treatment Short term professional-patient

relationships

MEDICAL MODELMEDICAL MODEL

return to life return to life

symptomssymptoms

illnessillness

decrease symptomsdecrease symptoms

We Treat Almost Only We Treat Almost Only Chronic Mental IllnessesChronic Mental Illnesses

Mission of public mental health to focus on chronic illnesses

Because of stigma people don’t come into treatment until waiting has been ineffective

Mental illnesses are particularly disabling, difficult to rehabilitate and adapt to

Mental illnesses are often associated with hopelessness

Mental illnesses impact self image rapidly and powerfully

REHABILITATION MODELREHABILITATION MODEL

return to life return to life

illnessillness

functional impairmentfunctional impairment

improved functionimproved function

HardingHarding’’s s Schizophrenia StudySchizophrenia Study

Bottom 1/3 considered hopelessBottom 1/3 considered hopeless Degenerating course for restDegenerating course for rest of life Nevertheless 62% recovered or Nevertheless 62% recovered or

significantly improvedsignificantly improved Definition of recoveredDefinition of recovered

having a social life holding a job being symptom free not taking medication

RECOVERY MODELRECOVERY MODEL

illnessillness

personperson

workerworker

fatherfather

husbandhusband

OriolesOrioles fanfan

churchchurch goergoer

illnessillness

1.1. HOPEHOPE2.2. EMPOWERMENTEMPOWERMENT3.3. SELF-RESPONSIBILITYSELF-RESPONSIBILITY4.4. MEANINGFUL ROLESMEANINGFUL ROLES

Treatment ImplicationsTreatment Implications

Emphasize patient education, collaboration, and self-help

Focus on hope Try to keep people in their lives Incorporate rehabilitation and adaptation Focus on impact on self image Promote long term, more personal doctor-

patient relationships

Mental illness creates special challenges in all these areas

Recovery ImplicationsRecovery Implications

For acute illnesses recovery results from symptom elimination and cure

For chronic illnesses recovery results from achieving self-management of the illness maintaining hope and self-image carrying on with life through rehabilitation and

adaptation replacing professional supports with natural

supports

For acute illnesses recovery is illness-based For chronic illnesses recovery is person-based

illnessillness

housing (treatment setting)housing (treatment setting)

friends (social support network)friends (social support network)

vocational class (therapeutic vocational class (therapeutic activity)activity)

familyfamily

ILLNESS CENTEREDILLNESS CENTERED

Person Centered RecoveryPerson Centered Recovery

Recovery with chronic illnesses must be person centered not illness centered.

Illnesses don’t recover, people do.

Recovery is from the crippling, not the injury.

Recovery is from the destruction, not the illness

personperson

housing (home)housing (home)

illnessillness(a part of me)(a part of me)

employmentemployment

friendsfriends

familyfamily

PERSON CENTEREDPERSON CENTERED

Person Centered TreatmentPerson Centered Treatment

The foundation of a good treatment is a good relationship, not a good diagnosis.

The purpose of mental health treatment, including medication, is not just to treat mental illnesses. It’s to help people with mental illnesses have better lives.

Medications should be quality of life goal directed instead of symptom relief directed

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Person-CenteredPerson-Centered……a fuzzy concepta fuzzy concept

everyone recognizes overall meaning different connotation for

different people core elements of

concept is clear but unclear on the periphery

difficult to operationalize in measurable elements

Patient-Centeredness

The concept of a medical home The concept of a medical home (practice team that coordinates a (practice team that coordinates a personperson’’s care across episodes and s care across episodes and specialties) is now reaching center specialties) is now reaching center stage in proposal for redesign of stage in proposal for redesign of the US health care systemthe US health care system.

The question remains open, however, about the degree to which The question remains open, however, about the degree to which medical homes will shift power and control into the hands of medical homes will shift power and control into the hands of patients, families and communities. In this paper patients, families and communities. In this paper I argue for a I argue for a radical transfer of power and bolder meaning of radical transfer of power and bolder meaning of ‘‘patient-patient-centered carecentered care, whether in a medical home or in the current , whether in a medical home or in the current cathedral of care, the hospital.cathedral of care, the hospital.””

““What What ‘‘Patient-CenteredPatient-Centered’’ Should Mean: Confessions Of An Extremist Should Mean: Confessions Of An Extremist”” Don Don Berwick, MD, Health Affairs, May 2009Berwick, MD, Health Affairs, May 2009

BerwickBerwick’’s Three Maxims Three Maxim’’ss

The needs of the patient come firstNothing about me without meEvery patient is the only patient

The experience (to the extent the informed, The experience (to the extent the informed, individual patient desires it) of transparency, individual patient desires it) of transparency,

individualization, recognition, respect, dignity, individualization, recognition, respect, dignity, and choice in all matters, without exception, and choice in all matters, without exception, related to onerelated to one’’s person, circumstances, and s person, circumstances, and

relationships in health care.relationships in health care.

Neal Adams MD Copyright 2008

quality

right care

right way

right time

Nothing About Me…Nothing About Me…Without MeWithout Me

Neal Adams MD Copyright 2008

quality

right care

right way

right time

person-centered

care person needs

manner person desires

time person desires

Nothing About Me…Nothing About Me…Without MeWithout Me

Surgeon GeneralSurgeon General

Established the scientific case for effective mental health practice

Identifies gaps between current practice and potential

Highlights inequities based on race and culture Lays the groundwork for President’s

New Freedom Mental Health Commission

…America's mental health service delivery system is in shambles

…we have found that the system needs dramatic reform….

…a dysfunctional service system that cannot deliver the treatments that work so well.

Michael Hogan, PhDMichael Hogan, PhDChairChair

PresidentPresident’’s New Freedom s New Freedom CommissionCommission

Interim ReportInterim Report20022002

President's MH President's MH CommissionCommission

in a transformed system…

“Consumers of mental health services must stand at the center of the system of care.

Consumers needs must drive the care and services provided.”

President's MH President's MH CommissionCommission

Goal 2 Mental Health Care is Consumer and Family

Driven Recommendation 2.1

the plan of care will be at the core of the consumer-centered, recovery-oriented mental health system

providers should develop customized plans in full partnership with consumers

IOM quality chasm reportIOM quality chasm report

Health care system is failing needs more than incremental change

Problems are structural and systemic views healthcare as a complex adaptive

system Proposes new paradigm

6 aims that define quality 10 operational rules 4 domains of change 4 levels within a system

IOM six aimsIOM six aims

Healthcare should be safe effective timely efficient equitable person-centered

IOM quality chasm reportIOM quality chasm report

Health care system is failing needs more than incremental change

Problems are structural and systemic views healthcare as a complex adaptive

system Proposes new paradigm

6 aims that define quality 10 operational rules 4 domains of change 4 levels within a system

Improving the Quality of Improving the Quality of Health Care for M/SU Health Care for M/SU

Conditions Conditions Six Key problem areas

assuring that the system is patient-centered enhancing the measurement and quality

improvement infrastructures that support care improving linkages across all systems of health

care promoting active participation by

representatives of both the mental and substance use field in the national health information infrastructure

building workforce competency and capacity the need to adapt to the unique marketplace for

the care of M/SU conditions

International PathwaysInternational Pathways

making mental health a public priority, promoting mental well-being and diminishing the stigma and discrimination associated with mental illness

improving access and enhancing the range of available services

assuring an adequate, competent, and skilled mental health workforce

making consumer involvement, a response to individual needs, and recovery and wellness the focus of mental healthcare

integrating and linking mental healthcare with general healthcare and other sectors and services

promoting evidence-based, measurable, and accountable mental healthcare

People who rely on public mental health services should be directly involved in designing their own care plan. Even though state and local agencies often include consumers and other advocates in care planning, they often allow them to have only a marginal role and fail to provide important information that could enable them to participate fully and effectively.

Bazelon Center 2008

“You keep talking about getting me in the ‘driver’s seat’ of my treatment and my life… when half the time I am not even in the damn car!”

Person in Recovery as Quoted in CT DMHAS Recovery Practice Guidelines, 2005

In Other Words...

Neal Adams MD Copyright 2008

Neal Adams MD Copyright 2008

Carl RogersCarl Rogers

congruence genuineness, honesty with

the client empathy

the ability to feel what the client feels

respect acceptance, unconditional

positive regard

Informed,ActivatedPatient

ProductiveInteractions

Prepared,ProactivePractice Team

Improved Outcomes

DeliverySystemDesign

DecisionSupport

ClinicalInformation

Systems

Self-Management

Support

Health System

Resources and Policies

Community

Health Care Organization

Chronic Care Model

Outcomes

Mental Health Care ModelMental Health Care Model

The (written) treatment planmakes EXPLICIT the shared understanding and the course of action agreed upon by the patient and provider

The plan is social contract

Shared Decision Making is an Shared Decision Making is an opportunity to make recovery real. opportunity to make recovery real. By developing and promoting By developing and promoting shared decision-making in mental shared decision-making in mental healthcare, we can advance healthcare, we can advance consumer-centered care and consumer-centered care and recovery. recovery.

Kathryn PowersKathryn PowersJuly 10, 2007 July 10, 2007

Shared decision-making is an interactive and Shared decision-making is an interactive and collaborative process between individuals and their collaborative process between individuals and their health care practitioners about decisions pertinent to the health care practitioners about decisions pertinent to the individualindividual’’s treatment, services, and ultimately their s treatment, services, and ultimately their personal recovery. personal recovery.

An optimal decision is one that is informed, consistent An optimal decision is one that is informed, consistent with personal values, and acted upon. Participants are with personal values, and acted upon. Participants are satisfied with the process used to make the decision.satisfied with the process used to make the decision.

Shared decision-making is particularly relevant when there is uncertainty about a particular decision

Uncertainty may stem from multiple or competing options each with advantages and disadvantages, incomplete or inconclusive scientific outcome evidence or individual factors such as personal values and beliefs, a limited knowledge about the options, or lack of support to make a clear choice.

Effective shared decision-making requires both informed and involved consumers, and practitioners who are willing to enter into meaningful dialogue with the person about the decision to be made.

Advantages of SDMAdvantages of SDM

Clients can best make decisions because of the unique values they place on outcomes and the necessary trade-offs based on preferences and needs (Charles and Demaio, 1993).

Surveys demonstrate near universal client desire to receive health care information and to participate in treatment decision-making (Benbassat, Pilpel & Tidhar, 1998).

Shared decision-making leads to improvements in the provider-client relationship and health outcomes, such as treatment adherence, treatment satisfaction, and biomedical outcomes (Stewart, 1995).

SDM in Mental HealthSDM in Mental Health

The critical first step to productive interactions and shared decision-making in mental health is shared understanding of consumer’s personal hopes and dreams, as well as the barriers that may lie in the way of success.

Without this understanding, there is no real basis for shared decision

SDM in Mental HealthSDM in Mental Health

In most service delivery systems today, this essential step is all too often overlooked and neglected—or at minimum done poorly.

Even when such understanding is considered, disagreements that become barriers to true mutuality in decision–making are avoided and go unrecognized rather than acknowledged and resolved.

Common GroundCommon Ground

The critical first step to “productive interactions” and shared decision-making is shared understanding of the patients personal hopes and dreams and wellness vision the barriers that may lie in the way of success appreciation of the patient’s experience and life context

Common Ground / Shared Understanding / Formulation must be an explicit step in the process supports phenomenological / integrative rather than

nosological approach to diagnosis

Without this understanding, there is no real basis for shared decision making and person-centered care.

In most service delivery systems today, this essential step is all too often overlooked and neglected—or at minimum done poorly.

Even when such understanding is considered, disagreements that become barriers to true mutuality in decision–making are avoided and go unrecognized rather than acknowledged and resolved.

Common GroundCommon Ground

DecisionalDecisional ConflictConflict

The uncertainty about which course of action to take when choice among competing actions involves risk, loss, regret or challenge to personal life values

Every day, people are faced with options affecting their health Surgery or medical management Condoms or the Pill? More aggressive options when simpler strategies

are not controlling acne, depression, cholesterol, blood sugar, menopause symptoms, insomnia, or attention deficit disorder?

Care at home or in a nursing home?

Decisional ConflictDecisional Conflict

Decision making is the process of choosing between alternatives, which may include doing nothing. Competent decision makers need to

understand and consider• the courses of action open to them• the chances of positive and negative effects• the desirability or value of these effects.

People are more likely to choose an option they think is likely to achieve valued outcomes and to avoid undesirable outcomes.

Decisional ConflictDecisional Conflict

Unfortunately, many health care decisions have alternatives that have both desirable and undesirable

outcomes have desirable outcomes occurring partly

with one option and partly with anotherNo alternative will satisfy all our

personal objectives and no alternative is without its risk of undesirable outcomes

Preference-Sensitive Care Preference-Sensitive Care

comprises treatments that involve significant tradeoffs affecting the patient’s quality and/or length of life

decisions about these interventions – whether to have them or not, which ones to have – ought to reflect patients’ personal values and preferences

ought to be made only after patients have enough information to make an informed choice

Preference-Sensitive Care Preference-Sensitive Care

Treatments for conditions where legitimate treatment options exist options involving significant tradeoffs

among different possible outcomes of each treatment • some people will prefer to accept a small risk of

death to improve their function• others won’t

decisions about these interventions should• reflect patients’ personal values and preferences• should be made only after patients have enough

information to make an informed choice, in partnership with the physician

Variations in Rates of Variations in Rates of Preference-Sensitive CarePreference-Sensitive Care

Extreme variation arises because patients commonly delegate decision-making to physicians under the assumption that doctors can

accurately understand patients’ values and recommend the correct treatment for them

Yet studies show that when patients are fully informed about their options, they often choose very differently from their physicians

Research on Decision-Making Research on Decision-Making Capability Involving Individuals With Capability Involving Individuals With

Psychotic Symptoms Psychotic Symptoms

IOM findings Although as a group, persons with

psychotic symptoms exhibit impaired decision-making capability to a greater extent than non–mentally ill individuals, there is considerable heterogeneity within the group.

Psychotic symptoms have less influence on decision-making capability than do cognitive abilities (i.e., the ability to remember, learn, under- stand, and reason).

Research on Decision-Making Research on Decision-Making Capability Involving Individuals With Capability Involving Individuals With

Psychotic Symptoms Psychotic Symptoms

IOM findings Individuals with severe mental illnesses,

such as schizophrenia, that can affect cognition may have much in common with those having other chronic general medical conditions, that can impair brain functioning, memory, and cognition

There is substantial evidence that understanding of factual information--even among persons with psychotic symptoms-- can be improved through interventions

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HypothesisHypothesis

Person-centered treatment plans are a key lever of personal and systems transformative change at all levels: Individual and family Provider Administrator Policy and oversight

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essential role essential role of treatment planningof treatment planning

key lever for systems changes at all levels making it real

opportunity to assure that individual recovery-- oriented life goals direct services

not about documentation all about the process

frequent point of failure

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A Plan Is A Road MapA Plan Is A Road Map

Provides hope by breaking a seemingly overwhelming journey into manageable steps for both the provider and the person served

A E

B C D

“life is a journey…not a destination”

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What Do People Want? What Do People Want?

Commonly expressed goals of persons served

Manage their own lives Quality of life Social opportunity Education Activity / Accomplishment Work Transportation Housing Spiritual fulfillment Health / Well-being Satisfying relationships

... to be part of the life of the community

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Building a PlanBuilding a Plan

Request for services

Assessment

Services

Understanding

Goals

Objectives

Outcomes

Prioritization

Strengths/Barriers

The Problem is, However… Many/most clinician’s have little training in

writing plans The focus tends to be on filling out forms and

meeting paperwork requirement The plan is viewed as an administrative

requirement with little relevance to patient care Because clinician's don’t know how to plan well,

they don’t see it as useful for themselves or patients

Rather than using the plan as a point of engagement, it is a burden outside their “real work”

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Neal Adams MD Copyright 2008

Creating The SolutionCreating The Solution

the treatment / recovery management plan can be the bridge between the system as it exists now and where we need to go in the future

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Competencyknowledge, skills and abilities

Project Management

work / business flow

Change Management

behavior and attitude

Change ModelChange Model

In Conclusion…In Conclusion…

We must move beyond endorsing the values of person-centered medicine shared decision-making and make it the everyday norm—for patients and providers

Treatment planning based on common ground and shred decision-making can be an effective strategy for making practice more person-centered and recovery oriented