Person-Centered Mental Health Care Moving Beyond the Rhetoric

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

Pleonasm N O U N : 1 a. The use of more words than are required to express an idea; redundancy. b. An instance of pleonasm. 2. A superfluous word or phrase. E T Y M O L O G Y : Late Latin pleonasmus, from Greek pleonasmos, from pleonazein, to be excessive, from ple

Kuhn/Paradigm Shift v true paradigm shift F new model for understanding and experiencing relationship between consumer and provider F challenges earlier precepts F can only supplant old model Neal Adams MD Copyright 2008

Mental health recovery is a journey of healing and transformation enabling a person with a mental health problem to live a meaningful life in a community of his or her choice while striving to achieve his or her full potential.

Traditional vs. Recovery v Traditional § Recovery-Oriented § practitioner-based § person-directed § problem- based § strengths-based § professional § skill acquisition § § § dominance acute treatment cure/amelioration facility-based dependence episodic reactive § collaboration § quality of life § community-based § empowerment/choices § least restrictive § preventative/wellness

Managing the Illness… Focusing on Deficits Promoting Recovery… Building Strengths üDecreased symptoms/Clinical stability üLife worth living üBetter judgment üA spiritual connection to God/others/self üIncreased Insight…accepts illness üA real job, financial independence üFollows team’s recommendations üBeing a good mom…dad…daughter üCompliance with treatment üFriends üDecreased hospitalization üFun üAbstinent üNature üMotivated üMusic üIncreased functioning üPets üPsychiatric Stability üA home to call my own üHealthy relationships/socialization üLove…intimacy…sex üUse services regularly/engagement üHaving hope for the future üCognitive functioning üJoy üRealistic expectations üGiving back…being needed üAttends the job program/clubhouse, etc. üLearning

Treating Acute Illnesses v Professionals as experts diagnosing illnesses and ordering treatment v Patient provides history and complies with treatment v Life is put on hold while in treatment v Short term professional-patient relationships

MEDICAL MODEL symptoms illness decrease symptoms return to life

We Treat Almost Only Chronic Mental Illnesses v Mission of public mental health to focus on chronic illnesses v Because of stigma people don’t come into treatment until waiting has been ineffective v Mental illnesses are particularly disabling, difficult to rehabilitate and adapt to v Mental illnesses are often associated with hopelessness v Mental illnesses impact self image rapidly and powerfully

REHABILITATION MODEL illness functional impairment improved function return to life

Harding’s Schizophrenia Study v Bottom 1/3 considered hopeless v Degenerating course for rest of life v Nevertheless 62% recovered or significantly improved v Definition of recovered § having a social life § holding a job § being symptom free § not taking medication

RECOVERY MODEL worker illness father church goer husband illness person 1. 2. 3. 4. Orioles fan HOPE EMPOWERMENT SELF-RESPONSIBILITY MEANINGFUL ROLES

Treatment Implications v Emphasize patient education, collaboration, and self-help v Focus on hope v Try to keep people in their lives v Incorporate rehabilitation and adaptation v Focus on impact on self image v Promote long term, more personal doctor-patient relationships Mental illness creates special challenges in all these areas

Recovery Implications v For acute illnesses recovery results from symptom elimination and cure v 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

ILLNESS CENTERED friends (social support network) housing (treatment setting) illness vocational class (therapeutic activity) family

Person Centered Recovery v Recovery with chronic illnesses must be person centered not illness centered. v Illnesses don’t recover, people do. Recovery is from the crippling, not the injury. Recovery is from the destruction, not the illness

PERSON CENTERED employment housing (home) illness (a part of me) person friends family

Person Centered Treatment v The foundation of a good treatment is a good relationship, not a good diagnosis. v 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. v Medications should be quality of life goal directed instead of symptom relief directed

Person-Centered …a fuzzy concept v everyone recognizes overall F different connotation for different meaning people v core clear F but elements of concept is unclear on the periphery v difficult to operationalize in measurable elements Neal Adams MD Copyright 2008

Patient-Centeredness The concept of a medical home (practice team that coordinates a person’s care across episodes and specialties) is now reaching center stage in proposal for redesign of the US health care system The question remains open, however, about the degree to which medical homes will shift power and control into the hands of patients, families and communities. In this paper I argue for a radical transfer of power and bolder meaning of ‘patientcentered care, whether in a medical home or in the current cathedral of care, the hospital. ” “What ‘Patient-Centered’ Should Mean: Confessions Of An Extremist” Don Berwick, MD, Health Affairs, May 2009

Berwick’s Three Maxim’s v The needs of the patient come first v Nothing about me without me v Every patient is the only patient The experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care.

Nothing About Me… Without Me quality right care right way right time Neal Adams

Nothing About Me… Without Me quality person-centered right care person needs right way manner

Surgeon General Established the scientific case for effective mental health practice v Identifies gaps between current practice and potential v Highlights inequities based on race and culture v Lays the groundwork for President’s New Freedom Mental Health Commission v

v …America's mental health service delivery system is in shambles v …we have found that the system needs dramatic reform…. v …a dysfunctional service system that cannot deliver the treatments that work so well. Michael Hogan, Ph. D Chair President’s New Freedom Commission Interim Report 2002

President's MH Commission v 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 Commission v Goal 2 F Mental Health Care is Consumer and Family Driven v Recommendation 2. 1 F the plan of care will be at the core of the consumer- centered, recovery-oriented mental health system F providers should develop customized plans in full partnership with consumers

IOM quality chasm report v Health care system is failing F needs more than incremental change v Problems are structural and systemic F views healthcare as a complex adaptive system v Proposes new paradigm F 6 aims that define quality F 10 operational rules F 4 domains of change F 4 levels within a system

IOM six aims v Healthcare should be F safe F effective F timely F efficient F equitable F person-centered

IOM quality chasm report v Health care system is failing F needs more than incremental change v Problems are structural and systemic F views healthcare as a complex adaptive system v Proposes new paradigm F 6 aims that define quality F 10 operational rules F 4 domains of change F 4 levels within a system

Improving the Quality of Health Care for M/SU Conditions v Six Key problem areas F assuring that the system is patient-centered F enhancing the measurement and quality improvement infrastructures that support care F improving linkages across all systems of health care F promoting active participation by representatives of both the mental and substance use field in the national health information infrastructure F building workforce competency and capacity F the need to adapt to the unique marketplace for the care of M/SU conditions

International Pathways v v v 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

In Other Words. . . “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

Carl Rogers v congruence v genuineness, honesty with the client v empathy v the

Chronic Care Model Community Health System Health Care Organization Resources and Policies Self. Management Support Informed, Activated Patient Delivery System Design Productive Interactions Decision Support Clinical Information Systems Prepared, Proactive Practice Team Outcomes Improved Outcomes

Mental Health Care Model

The (written) treatment plan makes 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 opportunity to make recovery real. By developing and promoting shared decision-making in mental healthcare, we can advance consumer-centered care and recovery. Kathryn Powers July 10, 2007

Shared decision-making is an interactive and collaborative process between individuals and their health care practitioners about decisions pertinent to the individual’s treatment, services, and ultimately their personal recovery. An optimal decision is one that is informed, consistent with personal values, and acted upon. Participants are satisfied with the process used to make the decision.

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

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

SDM in Mental Health v 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. v Without this understanding, there is no real basis for shared decision

SDM in Mental Health v In most service delivery systems today, this essential step is all too often overlooked and neglected—or at minimum done poorly. v 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 Ground v The critical first step to “productive interactions” and shared decision-making is shared understanding of F the patients personal hopes and dreams and wellness vision F the barriers that may lie in the way of success F appreciation of the patient’s experience and life context v Common Ground / Shared Understanding / Formulation F must be an explicit step in the process F supports phenomenological / integrative rather than nosological approach to diagnosis

Common Ground v Without this understanding, there is no real basis for shared decision making and person-centered care. v In most service delivery systems today, this essential step is all too often overlooked and neglected—or at minimum done poorly. v 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.

Decisional Conflict The uncertainty about which course of action to take when choice among competing actions involves risk, loss, regret or challenge to personal life values v Every day, people are faced with options affecting their health v F Surgery or medical management F Condoms or the Pill? F More aggressive options when simpler strategies are not controlling acne, depression, cholesterol, blood sugar, menopause symptoms, insomnia, or attention deficit disorder? F Care at home or in a nursing home?

Decisional Conflict v Decision making is the process of choosing between alternatives, which may include doing nothing. F Competent decision makers need to understand consider • the courses of action open to them • the chances of positive and negative effects • the desirability or value of these effects. v People are more likely to choose an option they think is likely to achieve valued outcomes and to avoid undesirable outcomes.

Decisional Conflict v Unfortunately, many health care decisions have alternatives that Fhave both desirable and undesirable outcomes Fhave desirable outcomes occurring partly with one option and partly with another v No alternative will satisfy all our personal objectives and no alternative is without its risk of undesirable outcomes

Preference-Sensitive Care v comprises treatments that involve significant tradeoffs affecting the patient’s quality and/or length of life v decisions about these interventions – whether to have them or not, which ones to have – ought to reflect patients’ personal values and preferences v ought to be made only after patients have enough information to make an informed choice

Preference-Sensitive Care v Treatments for conditions where legitimate treatment options exist Foptions 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 Fdecisions 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 Preference-Sensitive Care v Extreme variation arises because patients commonly delegate decision-making to physicians Funder the assumption that doctors can accurately understand patients’ values and recommend the correct treatment for them v Yet studies show that when patients are fully informed about their options, they often choose very differently from their physicians

Research on Decision-Making Capability Involving Individuals With Psychotic Symptoms v IOM findings F 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. F 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 Capability Involving Individuals With Psychotic Symptoms v IOM findings F 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 F There is substantial evidence that understanding of factual information--even among persons with psychotic symptoms-- can be improved through interventions

Hypothesis v 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 66

essential role of treatment planning v key lever for systems changes at all levels F making it real v opportunity to assure that individual recovery-oriented life goals direct services v not about documentation F all about the process v frequent Neal Adams MD Copyright 2008 point of failure

A Plan Is A Road Map v Provides hope by breaking a seemingly overwhelming journey into manageable steps for both the provider and the person served B C D A E “life is a journey…not a destination” Neal Adams MD Copyright 2008 68

What Do People Want? v Commonly expressed goals of persons served Manage their own lives Social opportunity Activity / Accomplishment Transportation Spiritual fulfillment Quality of life Education Work Housing Health / Well-being Satisfying relationships . . . to be part of the life of the community 69

Building a Plan Outcomes Services Objectives Strengths/Barriers Goals Prioritization Understanding Assessment Request for services

The Problem is, However… v Many/most clinician’s have little training in writing plans v The focus tends to be on filling out forms and meeting paperwork requirement v The plan is viewed as an administrative requirement with little relevance to patient care v Because clinician's don’t know how to plan well, they don’t see it as useful for themselves or patients v Rather than using the plan as a point of engagement, it is a burden outside their “real work”

Creating The Solution v the treatment / recovery management plan can be the bridge

Change Model Competency knowledge, skills and abilities Change Management behavior and attitude Neal Adams

In Conclusion… v We must move beyond endorsing the values of person-centered medicine shared decisionmaking and make it the everyday norm—for patients and providers v Treatment planning based on common ground and shred decision-making can be an effective strategy for making practice more personcentered and recovery oriented