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Institute of Medicine (US) Committee on Crossing the Quality Chasm: Adaptation to Mental Health and Addictive Disorders. Improving the Quality of Health Care for Mental and Substance-Use Conditions: Quality Chasm Series. Washington (DC): National Academies Press (US); 2006.

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Improving the Quality of Health Care for Mental and Substance-Use Conditions: Quality Chasm Series.

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3Supporting Patients' Decision-Making Abilities and Preferences


Residual stigma, discrimination, and the multiple types of coercion that sometimes bring individuals with mental and/or substance-use (M/SU) illnesses into treatment have substantial implications for their ability to receive care that is respectful of and responsive to their individual preferences, needs, and values—what the Quality Chasm report refers to as “patient-centered care.” Concerns about impaired decision making and the risk of violence are responsible for much of this stigma and the resulting discrimination. The failure of many to understand the biological and medical nature of drug dependence creates additional stigma for those individuals whose alcohol or other drug use has progressed to physiological dependence. Moreover, coerced treatment, common in substance-use health care though less so in mental health care, raises the question of how all patients with M/SU illnesses can be the source of control for their treatment decisions.

However, there is great diversity in the decision-making abilities of individuals with M/SU illnesses—just as there is in the general population. Even when care is coerced, patients can and should have a voice in the options available within their care plan. Actively supporting these patients' decision making at the point of care delivery can preserve respect for patient preferences, needs, and values and improve patient outcomes. The committee recommends specific actions that all clinicians, organizations, accrediting bodies, health plans, and purchasers involved in M/SU health care should take to ensure patient-centered care for individuals with M/SU problems and illnesses. It further recommends actions to preserve patient-centered care when coercion into treatment is unavoidable.


Crossing the Quality Chasm defines “patient-centered care” as care that is “respectful of and responsive to individual patient preferences, needs, and values and ensur[es] that patient values guide all clinical decisions” (emphasis added) (IOM, 2001:40). A number of the rules for redesigning health care set forth in the Quality Chasm report (see Box 2-2 in Chapter 2) relate to achieving patient-centered care (see Box 3-1).

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BOX 3-1

Rules for Patient-Centered Care. Customization based on patient needs and values. The system of care should be designed to meet the most common types of needs but have the capability to respond to individual patient choices and preferences. The patient (more...)

The aim of patient-centered care and its associated rules emphasize (1) clinical care that is based on individual patient preferences, needs, values, and decision making; and (2) patient access to and receipt of information that permits well-informed health care decisions. Yet consumers of all types of health care face substantial barriers to making such decisions. These barriers include inadequate comparative information and poorly structured mechanisms to enable meaningful choices of plans, providers, and treatments1; poor general and health literacy (IOM, 2004a); a tension that can sometimes occur between consumer-directed and evidence-based care (IOM, 2001); and providers' lack of understanding of cultural differences.

When one is diagnosed with a mental and/or substance-use (M/SU) illness (and sometimes an M/SU problem), additional obstacles to decision making arise from the lingering stigma attached to some of these illnesses and from the practice of coerced treatment. The effects of this stigma and coercion (especially as they relate to perceptions of patients as having impaired decision-making abilities and posing a danger) are complex and have substantial ramifications for the delivery of patient-centered care. These issues and related evidence are presented in the following four sections of this chapter, which address, respectively:

  • Effects of stigma and discrimination in impairing patient decision making, patient-centered care, and patient outcomes. Understanding these effects points to actions that can counteract stigma and discrimination.
  • Two stereotypes that uniquely stigmatize individuals with M/SU problems and illnesses—impaired decision making and dangerousness—as well as additional stigmatizing misperceptions about drug dependence.
  • Coercion into treatment that results from concerns about impaired decision making and dangerousness.
  • Actions clinicians, organizations, insurance plans, and governments (federal, state and local) can take to combat stigma and discrimination and support patient-centered care.

The committee's recommendations for achieving patient-centered M/SU care are presented in the final section.


“Stigma” is defined as the negative labeling and stereotyping of a group of individuals that is based on some observable trait they share and that leads to discrimination against them by individuals or society at large (Corrigan and Penn, 1999; Link and Phelan, 2001). “Stigma” refers to the negative attitudes toward members of a group; “discrimination” refers to the behaviors that result from these attitudes.

Within a stigmatized group, different personal, social, and economic resources shape the lives and personal power of individual group members and produce substantial variation in the extent to which any given member personally experiences the effects of stigma (Link and Phelan, 2001). Nevertheless, American society as a whole—like that of most if not all countries—has for centuries stigmatized individuals with M/SU illnesses and discriminated against them socially, in employment, and in their efforts to secure such necessities of life as housing (Farina, 1998; Join Together, 2003; SAMHSA, 2000). Although understanding of the causes of mental illnesses has improved among the general population over the past 50 years, stigma continues (Hall et al., 2003; Pescosolido et al., undated) to varying degrees for individuals with different M/SU illnesses. In general, substance-use illnesses are more stigmatized than mental illnesses, and some mental illnesses (e.g., schizophrenia) more than others (e.g., major depression) (Mann and Himelein, 2004; Martin et al., 2000).

Two negative stereotypes in particular stigmatize individuals with M/SU illnesses and affect their ability to receive patient-centered care: (1) misperceptions about the extent to which individuals with various M/SU illnesses are capable of making decisions about their treatment, and (2) erroneous beliefs about the extent to which these individuals pose a danger to themselves or others (Martin et al., 2000).2 Individuals who have developed physiological drug dependence may also suffer from the erroneous stereotype that their drug cravings and compulsion to continue using drugs in the face of serious adverse consequences are solely a matter of weak moral character or lack of willpower (SAMHSA, 2000). This failure to understand the biological mechanisms and consequences of drug dependence interferes with these individuals' ability to participate in and receive care that may be most effective in treating their chronic condition.

Evidence pertaining to the above stereotypes is presented in the next section. In this section, we examine three ways in which these stereotypes threaten the receipt of patient-centered care: (1) by lessening patients' ability to participate in the management of their illness and achieve desired treatment outcomes; (2) by encouraging pessimistic and nontherapeutic attitudes and behaviors among clinicians, making them less likely to foster and support patients' self-management efforts; and (3) by promoting discriminatory public policies that create barriers to patient-centered care and recovery. All three of these effects of stereotyping can contribute to poorer health outcomes (Link and Phelan, 2001). Understanding them can point to ways of remedying them and thereby promoting patient-centered care.

Adverse Effects on Patients' Ability to Manage Their Care and Achieve Desired Health Outcomes

As noted below, the adverse effects of stigma lead down a pathway to diminished health outcomes. The steps along this pathway are depicted in Figure 3.1 and described below.

FIGURE 3-1. The stigma pathway to diminished health outcomes.


The stigma pathway to diminished health outcomes.

Diminished Self-Esteem

Stigma influences not just how individuals with M/SU illnesses are perceived by others, but also how they perceive themselves (Farina, 1998; Link and Phelan, 2001; Wahl, 1999; Wright et al., 2000). Individuals with a mental illness who have greater concerns about or experiences with stigmatization3 have lower self-esteem (Link et al., 2001; Wright et al., 2000), perform more poorly on tasks (Farina, 1998), and have weaker social and leisure relationships and interactions (Perlick et al., 2001), all of which are associated with a greater risk of relapse or no remission (Cronkite et al., 1998; Sherbourne et al., 1995). Among individuals with mental health problems, stigma also is associated with not taking prescribed medications (Sirey et al., 2001) and is a significant reason why some individuals do not seek treatment (SAMHSA, 2004b). Moreover, stigma leads to self-deprecation and compromised feelings of mastery over life circumstances (Wright et al., 2000), and thereby diminishes beliefs and expectations regarding self-determination and the ability to make decisions on one's own behalf. In short, diminished self-esteem correlates with decreased belief in “self-efficacy” (Markowitz, 1998).

Decreased Self-Efficacy

Perceived self-efficacy refers to a person's belief that that he or she is capable of carrying out a course of action to reach a desired goal. Self-efficacy beliefs touch every aspect of peoples' lives—whether they think productively, self-defeatedly, pessimistically, or optimistically; how well they motivate themselves and persevere in the face of adversity; their vulnerability to stress and depression; the life choices they make; the courses of action they pursue; how much effort they will make in pursuing a course of action; and their emotional reactions to the course of events. Self-efficacy also is a critical determinant of how well knowledge and skills are obtained (Pajares, 2002) and an excellent predictor of behavior. Unless people believe they can produce desired events through their actions, they have little incentive to act. Self-efficacy beliefs are constructed from four main sources of information: personal experience of mastery; vicarious experience through others with similar characteristics; verbal persuasion; and physiological capability, strength, and vulnerabilities (Bandura, 1997b).

There is evidence that self-efficacy is key to individuals' successful self-management of a variety of chronic illnesses and achievement of resulting improvements in health outcomes (Lorig and Holman, 2003; Lorig et al., 2001; Shoor and Lorig, 2002), as well as an important component of recovery from substance use (Samet et al., 1996). Self-efficacy is among the most powerful predictors of favorable posttreatment outcomes among treated alcohol patients (Project MATCH Research Group, 1998). It is also theorized to be a common mechanism in the effectiveness of psychosocial treatments for a variety of mental illnesses (Bandura, 1997a; Mueser et al., 2002).

Impaired Illness Self-Management

Illness self-management encompasses the day-to-day tasks an individual carries out to live successfully with chronic illness(es). Experts in the study of effective illness self-management interventions identify five core skills needed by patients: problem solving, decision making, resource utilization, formation of an effective patient–provider relationship, and taking action. These five skills are necessary to manage the effects of illness in three areas: medical or behavioral health practices, social and interpersonal role functioning, and emotional management (Lorig and Holman, 2003). These skills pertain, for example, to monitoring illness symptoms; using medications appropriately; practicing behaviors conducive to good health in such areas as nutrition, sleep, and exercise; employing stress reduction practices and managing negative emotions; using community resources appropriately; communicating effectively with health care providers; and practicing health-related problem solving and decision making. Self-management support programs for a variety of chronic illnesses, including heart disease, lung disease, stroke, and arthritis, have been shown to reduce pain and disability, lessen fatigue, decrease needed visits to physicians and emergency rooms, and increase self-reported energy and health. These improvements in health outcomes are strongly associated with increased self-efficacy (Bodenheimer et al., 2002a; Lorig and Holman, 2003; Lorig et al., 2001).4

Components of illness self-management for individuals with chronic mental illnesses such as schizophrenia and bipolar illness (i.e., psychoeducation, behavioral practices to support taking medications appropriately, relapse prevention, and teaching of coping skills and actions to alleviate symptoms) also have been developed, tested, and found effective in addressing many of the behaviors necessary for patient recovery (Mueser et al., 2002). A standardized approach for illness self-management has been developed and empirically validated by Stanford University (Stanford University School of Medicine, 2005). Illness self-management also is included as one of the six essential components of the Chronic Care Model (Bodenheimer et al., 2002b), which is discussed in Chapter 5 and is achieving improved health outcomes for a variety of physical and mental illnesses.

Weakened Patient Activation and Self-Determination

Self-efficacy and self-management also are related to the concepts of “patient activation” and “patient self-determination.” “Patient activation” refers to the constellation of skills, knowledge, beliefs, and behaviors necessary for an individual to manage a chronic illness successfully (Von Korff et al., 1997). An “activated” patient also is one of the key elements of the Chronic Care Model (Bodenheimer et al., 2002a). Self-determination theory is concerned with individuals' innate inner resources for personality development and behavioral regulation and how these resources are influenced by social contexts so as to affect human motivation (Ryan and Deci, 2000). Research in this area has established the central importance to self-determination of three innate psychological needs: self-perceived competence (self-efficacy, discussed above), autonomy, and relatedness. This research also has shown that people must perceive themselves as competent (self-efficacious) and experience their behavior as volitional if they are to possess intrinsic motivation (Cook, 2004).

Whether one is discussing patient self-management, self-activation, or self-determination, the underlying theme is the same: patients' behaviors will be determined by how meaningful a given problem is to them and how capable of resolving the problem they perceive themselves to be. As described above, stigma can adversely affect individuals' self-efficacy beliefs, their ability to manage their M/SU illness, and thereby their recovery. Clinicians, through their clinical expertise and close relationship with their patients, should be vehicles for increasing their clients' beliefs in their self-efficacy. However, not all providers foster their patients' self-efficacy beliefs and support patient decision making—the second way in which stigma obstructs patient-centered care.

Stigma Affects Clinician Attitudes and Behaviors

Because of their scientific knowledge and special relationship with their patients, clinicians have a singular opportunity through their attitudes and practices to promote patient self-esteem, self-efficacy, decision making about treatment, illness self-management practices, and recovery. While many health care professionals exemplify these positive attitudes and related practices in their treatment relationships with their patients, some do not. Testimony to the committee from consumer groups (Bergeson, 2004; Leibfried, 2004) revealed that poor provider support for patients' decision making and illness self-management and pessimistic beliefs about their abilities were serious obstacles to their decision making and recovery. As articulated by one speaker (Bergeson, 2004):

We believe that the majority of physicians and other health care providers must fundamentally change their approach toward their patients, an approach revealed through the use of that “special voice.” Sadly, far too many professionals have a manner of speaking to us as if we are slightly stupid children.

It's that voice that reminds us that we aren't really partners in care with our health care providers. No matter that we may know more about the latest efficacy data on specific medications than our doctors; no matter that we may be following rTMS and vagus nerve studies as treatment options and our nurses haven't even heard of them; no matter that we may be aware of the outcomes of CBT [cognitive behavioral therapy] with bipolar patients, and our talk therapist—who is most frequently a social worker—isn't schooled in the fundamentals of CBT.

It's that voice that reminds us that health care providers still think of themselves as taking care of us, instead of working with us. It's the voice of learned helplessness.

Such negative and discouraging attitudes and practices are a serious problem. Experts in self-efficacy research note that it is usually easier to weaken self-efficacy beliefs through negative appraisals than to strengthen them through positive comments (Pajares, 2002).

With respect to treatment for substance dependence, some providers hold the stereotypical view discussed above that fails to understand the biological aspects of dependence and regards the illness simply as a matter of failed willpower or weak character. As a result, a treatment provider or program may not offer or support a patient's choice to use medications, such as methadone, to treat the illness.

Nontherapeutic clinician attitudes and behaviors may have several sources. First, health care providers, through general societal acculturation, initially can be expected to hold the same attitudes and beliefs about individuals with M/SU illnesses as society at large unless they have had substantial prior contact with such individuals (Corrigan et al., 2001; Kolodziej and Johnson, 1996) and/or been assimilated into a different culture that counteracts this misinformation. However, the clinical settings in which some graduate mental health students receive their training provide predominantly inpatient as opposed to outpatient care. Graduate education of medical residents, for example, has been slow to shift training away from inpatient settings (Hoge et al., 2002). Clinical training in inpatient settings, as opposed to the ambulatory settings in which most individuals receive treatment, provides experience with patients with mental illnesses during their most acutely ill phase and may thus reinforce a view of those with such illnesses as being more disabled than is the case. Moreover, most academic education and training programs for clinicians focus on the cognitive domain of learning, along with some skill development. Few programs have content or instructional strategies targeting the affective or attitudinal domain of learning. Thus it should not be a surprise that clinicians' attitudes may mirror those of society at large and be unchanged by their education (Stuart et al., 2004).

Also, as discussed in Chapter 7, education of the general health care workforce has addressed substance-use illnesses inadequately. To the extent that health care providers do not understand and have knowledge of alcohol and drug dependence as distinct diseases, their treatment of these illnesses will be ineffective. Unfortunately, evidence presented in Chapter 4 indicates that such poor understanding and limited knowledge may be widespread. In one study, treatment of alcohol problems and illnesses nationally ranked the lowest on measures of health care quality for a wide variety of illnesses (McGlynn et al., 2003).

Moreover, the terminology used by society to refer to M/SU health care is different from that used in general health care and may foster stigmatizing beliefs. For example, “mental illness” often is used as a singular noun instead of the plural “mental illnesses.” Research indicates that some people attach different levels of stigma to different mental illnesses, based in part on the extent to which a given illness is perceived as treatable (Mann and Himelein, 2004). Consistent with this attitude, surveys of the public show a reluctance to label an individual as “mentally ill,” but a greater willingness to use more-specific mental health labels, such as “schizophrenia,” “major depression,” or “alcohol dependence” (Link et al., 1999). A one-size-fits-all label of “mental illness” could foster a perception that all mental illnesses have equal consequences, disabilities, and handicaps, and perhaps contribute to stereotyping. In contrast, we no longer typically refer to individuals as having “cancer” as if it is a single disease; rather, we more often (and more accurately) refer to them as having leukemia, breast cancer, melanoma, lung cancer, colon cancer, prostate cancer, etc. A parallel can also be drawn with references to HIV, measles, tuberculosis, and so on instead of simply “infectious disease.”

In addition, some terminology and phrasing used in M/SU health care is different from that commonly used in general health care and may encourage clinicians' nontherapeutic attitudes. For example, the terms mental “disorders” (as in the Diagnostic and Statistical Manual of Mental Disorders [DSM]) and emotional “disturbances”5 are used to describe mental illnesses, problems, and symptoms. In general health care, the terms “disorders,” “disordered” and “disturbance” are used less frequently. The International Classification of Diseases (ICD), the coding system used in the United States and worldwide for the collection and analysis of health care data, generally uses the terminology “diseases,” “conditions,” “symptoms,” “problems,” and “complaints” for most health conditions but, like the DSM, typically refers to mental illnesses and conditions as “disorders” (AMA, 2001). Calling mental and emotional problems and illnesses “disorders” and “disturbances” disinclines those so labeled and those applying the labels to think of individuals thus afflicted as having an illness, a condition, symptoms, or perhaps a “problem” that is amenable to short-term intervention. Rather, these labels could contribute to a perception that mental illnesses and problems should be viewed differently from most general health care illnesses, symptoms, and problems.

Moreover, the phrasing “serious and persistent,” used in some federal laws to refer to a subset of mental illnesses, has no counterpart in general medical care, which describes general illnesses with similar consequences as “severe” and “chronic.” The word “serious,” for example, is not used in general health care terminology such as that in the ICD (e.g., it is not common to talk about “serious” cancers). The term “persistent” could connote a lack of belief in the ability to improve and recover. A less pejorative and clinically more meaningful way to categorize individuals with mental illnesses that are accompanied by chronic functional limitations might be to refer to them as having mild, moderate, or severe disability associated with a mental illness symptom or diagnosis, rather than referring to them as “seriously” mentally ill.

The use of the word “abuse” as opposed to substance “use” or “dependence” also has been identified as pejorative. It implies that alcohol or other drug dependence connotes a “willful commission of an abhorrent (wrong and sinful) act” and misstates the nature of alcohol or drug use and dependence (White, undated:4).

Recognizing the power of terminology to contribute to stigma, the Substance Abuse and Mental Health Services Administration's (SAMHSA) National Treatment Plan Initiative for improving substance abuse health care called for a language audit to identify problems inherent in the terminology used in the field and in public discussions, and for the development of a nonstigmatizing taxonomy to describe alcoholism, drug “addiction,” and available treatments and services (SAMHSA, 2000). A similar process could be beneficial in reducing stigmatizing language used throughout the mental health field.

Finally, major factors in clinicians' beliefs and behaviors may be notions of M/SU patients' inability to make decisions competently and difficulties encountered when individuals are coerced into treatment—a common occurrence for those entering treatment for substance use. Evidence on both of these factors is discussed later in this chapter.

Relationship Between Stigma and Discriminatory Policies

The discrimination that results from stigma can be direct from person to person, such as that described above, or may involve an individual in a position of authority denying employment, housing, or a social relationship to an individual who is a member of a stigmatized group. More structurally imbedded societal discrimination can also occur, as when treatment settings are located in more disadvantaged neighborhoods or when society decides to expend fewer resources on a stigmatized group (Corrigan and Watson, 2003; Link and Phelan, 2001). Thus, the effects of stigma extend beyond the attitudes and practices of individual members of the public, patients, and clinicians to influence public policy as well—the third way in which stigma obstructs patient-centered care. The most visible manifestation of this level of discrimination is the more limited insurance coverage of M/SU health care compared with general health care. Such discrimination is also seen in public policies that impose additional penalties beyond those imposed by the judicial system on individuals convicted of some types of drug use.

Discrimination in Health Insurance Coverage

Coverage of mental health care Despite federal and state laws aimed at encouraging equal coverage of mental health and other health benefits offered by employers,6 the National Compensation Survey of private employers, conducted in 2000 by the Department of Labor, documented that inpatient and outpatient mental health care is less often covered in employee health benefit plans than is general health care. Approximately 7 percent of employees with medical care benefits do not have inpatient or outpatient mental health care included in their benefit package. Of the 93 percent of employees with mental health benefits, 85 and 93 percent are subject to limitations on inpatient and outpatient mental health benefits, respectively, that are more restrictive than those on general medical benefits. The most common difference is more restrictions on inpatient days of care and outpatient visits, experienced by 76 and 72 percent of employees, respectively. Higher copayments or coinsurance for inpatient and outpatient care are also experienced by 16 and 50 percent, respectively (Bureau of Labor Statistics, 2003).7

Results of a 2002 survey of public employers indicate that limitations on inpatient and outpatient days of care may have increased over the past few years, while cost sharing has declined (Barry et al., 2003). In 2003, 27 percent of workers in public and private firms with three or more workers were restricted to 20 or fewer outpatient visits per year, and 37 percent were restricted to 21–30 inpatient days per year. An additional 13 percent were limited to 20 or fewer inpatient days per year (Claxton et al., 2003). These benefit limits most often are reached by individuals with some of the most severe mental illness diagnoses, including depression, bipolar illness, and psychoses. Moreover, some state laws narrowly define mental illness to include only specific diagnoses, such as schizophrenia, schizoaffective disorder, bipolar disorder, major depression, and obsessive-compulsive disorder (Health Policy Tracking Service, 2004).

There is also evidence that benefit limits are reached more often by children than adults (Peele et al., 1999). In addition, some specific diagnoses that are common in childhood, such as autism, attention deficit hyperactivity disorder (ADHD), and conduct disorders, are excluded from coverage under certain private health benefit plans (Peck and Scheffler, 2002; Peele et al., 2002). In other cases, benefits are constructed in ways that prevent effective treatment for some childhood conditions (Peck and Scheffler, 2002).

The U.S. Government Accountability Office (GAO) found that such limitations on insurance coverage contribute to the phenomenon whereby some families resort to placing their children (most often adolescents with severe mental illness) in the child welfare or juvenile justice system even though the family is not neglectful or abusive of the child, and the child has committed no criminal or delinquent act. Because the child welfare and juvenile justice systems often have ways of paying for mental health services, they are used by parents for this purpose even though they were not designed to care for children who have not been abused or neglected or committed a criminal or delinquent act (GAO, 2003). Doing so sometimes requires parents to give up legal custody of their children and place them in an out-of-home residential or foster care setting (Giliberti and Schulzinger, 2000). In 2001, 19 states and 30 counties estimated that 12,700 children in their jurisdictions were placed in the child welfare or juvenile justice system for the purpose of receiving mental health services. Because there is no systematic tracking of these children, the extent to which this phenomenon occurs nationally is unknown; however, GAO states that it is likely higher than the numbers reported by this limited number of states (GAO, 2003). In Virginia alone, for example, 2,008 children—approximately 1 of every 4 children in Virginia's foster care system as of June 1, 2004—were there either because mental health care was not fully covered by the parents' insurance or because the family did not have access to any insurance (Jenkins, 2004).

Coverage of substance-use health care Individuals with substance-use illnesses face even greater discrimination in insurance coverage than those with mental illnesses. Fewer employer-sponsored health plans cover substance-use treatment than cover either general or mental health care. Only 84 and 85 percent of employers providing medical care benefits, respectively, have coverage for outpatient drug or alcohol rehabilitation, compared with 100 percent who have coverage for general hospital and physician office visits and 93 percent who have coverage for inpatient and outpatient mental health care. When coverage for substance-use illnesses is available, it also is typically more restrictive than that for general illnesses (Bureau of Labor Statistics, 2003). For example, some policies provide for only two lifetime episodes of treatment for substance-use problems or illnesses.8 Although as of 2000, 41 states and the District of Columbia either explicitly included substance-use treatment within the scope of their mental health benefit laws or had separate statutes addressing substance-use treatment coverage, 13 of these state laws covered only treatment for alcoholism, as opposed to treatment for other drug use (GAO, 2000).

Moreover, private insurers sometimes deny insurance claims for the care of an injury sustained by an individual if he or she was intoxicated or under the influence of any narcotic at the time of the injury. A late 1998 review of insurance statutes in all 50 states found that 38 states and the District of Columbia allowed policies that denied health insurance coverage for injuries due to alcohol use (Rivara et al., 2000). Representative data do not exist on the extent to which insurance plans exercise these provisions. However, provider perceptions that this may occur and result in denial of reimbursement discourage emergency departments and trauma centers from screening for alcohol use (Cimons, 2004)—this despite the strong associations between alcohol use and trauma and the effectiveness of screening and brief interventions in reducing substance use (D'Onofrio and Degutis, 2002; Gentilello et al., 2005; Moyer et al., 2002).

Insurance discrimination is not limited to private-sector insurance programs. The traditional Medicare indemnity program (the fee-for-service program in which the great majority of Medicare beneficiaries are enrolled) covers mental health and substance-use care. However the outpatient benefit requires relatively high cost sharing (50 percent), except for medication management (20 percent copayment).

Other Discriminatory Public Policies

Restrictions on access to student loans for some drug offenses Because federal student loan programs can help pay for higher education, they can play an important part in helping individuals realize their plans for recovery from substance-use illnesses. However, the 1998 Amendments to the Higher Education Act of 1965 added a provision9 that makes an individual convicted (in the criminal as opposed to juvenile justice system) of the possession or sale of a controlled substance ineligible to receive any federal grant, loan, or work assistance funding for higher education. The period of ineligibility varies from 1 year to an “indefinite” length of time according to whether the conviction is for possession or sale and whether it is for a first, second, or subsequent offense. These restrictions are placed on an individual in addition to the sentence imposed by the criminal justice system. Eligibility can be reinstated subsequent to satisfactory completion of an approved drug rehabilitation program (which is defined liberally but must include at least two unannounced drug tests). This law does not include alcohol-related convictions, such as multiple drunk-driving convictions or manslaughter as a result of drunk driving. Nor does it prohibit student loans for individuals convicted of non–drug-related violent crimes, such as assault, rape, or murder.

Potential lifetime ban on receipt of food stamps or welfare for felony drug conviction Under section 115 of the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (often referred to as the “Welfare Reform Act”), individuals convicted of a state or federal felony offense of possession, use, or sale of drugs (i.e., controlled substances, not alcohol) are subject to a ban on receiving federal cash assistance (Temporary Assistance for Needy Families [TANF] or “welfare”) and food stamps, even if they serve the full term of their sentence, unless the state in which they reside has passed legislation opting out of or mitigating this restriction.10,11

Moreover, although a convicted individual cannot be included in the calculation of household size for TANF benefits or food stamps, his or her income and resources are included in calculating eligibility for food stamps.12 Including the ineligible person's income in determining food stamp benefits penalizes the entire household, which is thereby eligible for less assistance each month. This and the TANF provisions diminish the resources available to convicted individuals living in poverty to change their life circumstances in ways that are important to achieving recovery. For example, they are less capable of paying for child care, securing transportation, and paying for education—all of which may be necessary in securing and retaining employment. These resources may also be critical to removing these individuals from contact with people, places, and situations associated with their former drug use. Such contact creates a biological response in an individual with a drug dependence that induces cravings for the addictive substance (Hyman and Malenka, 2001).


Two Harmful Stereotypes: Incompetent Decision Making and Dangerousness

The 1996 General Social Survey of the attitudes, beliefs, and behaviors of Americans documented the extent to which Americans believe individuals with M/SU illnesses are incompetent to make decisions and are a danger to themselves or others (Pescosolido et al., 1999):

  • More than a third (36 percent) of Americans believed that individuals with major depression are “not very able” or “not able at all” to make decisions about their treatment; 74 percent believed this to be true for individuals with schizophrenia. A minority (6.8 percent) further believed that an individual with a mental health “problem” not severe enough to be considered a mental illness also is not very able or not able at all to make treatment decisions.
  • The public perceived those with drug problems as least competent in decision making. About half (51 percent) believed individuals with alcohol dependence are not very able or not able at all to make decisions about their treatment; 72.1 percent believed this of individuals with cocaine dependence.
  • The belief that individuals with major depression are “very likely” to do something violent to others was held by 9.2 percent; 12.8 percent believed this of individuals with schizophrenia. The percentages were higher for individuals with dependence on alcohol (17.5 percent) and cocaine (42 percent).
  • As the public's perception of the seriousness of an individual's condition increased, so, too, did the belief in that individual's dangerousness, while belief in the person's competence to make decisions decreased.
  • Significantly, the proportion of Americans who associated mental illness with “violent or dangerous behavior” in 1996 was nearly double that found in the 1950 General Social Survey (Pescosolido et al., undated).

Such beliefs are inconsistent with the evidence (discussed below) that a clear majority of individuals with mental illnesses (including those with severe illnesses such as schizophrenia) and substance-use illnesses are able to make treatment and other life decisions, and do not represent a danger to themselves or others. Stereotypes of incompetent decision making and dangerousness are refuted by strong evidence showing great diversity in the decision-making abilities of individuals with M/SU illnesses—just as there is in the population without these illnesses. Variable proportions of “normal” research subjects have been found to have deficits in decision making. Many situations (e.g., stress, serious illness, pain, or, more commonly, poor judgment) can undermine mentally healthy people's decision-making capacity. Moreover, individuals with M/SU illnesses are a minor source of the acts of violence committed in society; most acts of violence are committed by individuals who traditionally would not be considered mentally ill.

Evidence on Decision-Making Capacity13

Conceptual Framework

The process of determining the decision-making capacity of any individual (whether with or without an M/SU illness) can be conceptualized as involving three interrelated sets of factors: (1) the individual's innate abilities at a point in time to understand, appreciate, reason, and communicate preferences; (2) the risks and benefits inherent in the specific decision to be made; and (3) the knowledge and biases of the person making the judgment about the capacity of the individual in question. The influence of each of these factors on decision-making capability is discussed below.

Ability to understand, appreciate, reason, and communicate preferences Analyses and reviews of the legal and ethics literature over many years have identified several abilities as integral to the concept of “competence” (Appelbaum and Grisso, 1988; Brody, 1998; Culver and Gert, 1990; Faden and Beauchamp, 1986; Roth et al., 1977). The abilities to understand, appreciate, reason, and communicate one's preferences are those most often accepted as salient in the clinical setting, cited in major policy recommendations, and used in clinical reports on competence (American Psychiatric Association, 1998; Appelbaum and Grisso, 1995; Berg et al., 1996; National Bioethics Advisory Commission, 1998). The model based on these four abilities was developed, operationalized, and tested over the past two decades (Appelbaum and Grisso, 1988, 1995; Appelbaum et al., 1999; Berg, 1996; Grisso and Appelbaum, 1995; Grisso et al., 1997). This model is the basis for three generations of instruments (Appelbaum et al., 1999; Grisso et al., 1995, 1997) employed in studies of decision making involving persons with general medical illness (heart disease) (Grisso and Appelbaum, 1995; Grisso et al., 1995), schizophrenia (Carpenter et al., 2000; Grisso and Appelbaum, 1995; Grisso et al., 1997), major depression (Appelbaum et al., 1999; Grisso and Appelbaum, 1995), HIV (Moser et al., 2002), and Alzheimer's disease (Kim et al., 2001) disease.14 In this model:

  • Understanding refers to an individual's ability to comprehend relevant facts. The individual need not be able to apply, believe, or acknowledge that the facts pertain to him or herself. For instance, one might be able to explain that doctors are recommending a specific course of treatment and clearly articulate their rationale, and yet refuse to believe that this rationale applies to one's own case (Appelbaum et al., 1982). The concept of understanding thus has a fairly narrow meaning.
  • Appreciation is the ability to apply the facts of a situation to oneself.
  • Reasoning refers to the formal aspects of decision making, such as the ability to compare, make judgments about probability, and think about the consequences of potential actions (Grisso and Appelbaum, 1998). It does not refer to the reasonableness of the content of a belief; rather, the focus is on the process of arriving at a decision.
  • Evidencing a choice is a minimal, necessary requirement.

When these functional abilities are fully intact, the person's decision-making capability is not in question (Meisel, 1998). When these functional abilities are obviously absent (for example, when a patient is in a catatonic state and unable even to express a preference), the determination of incapacity also is straightforward. The determination is more difficult when decision-making abilities fall somewhere in between. For example, as discussed below, multiple studies using various methodologies have shown that persons with schizophrenia have impairments in the abilities needed for informed consent (Grisso and Appelbaum, 1995; Grisso et al., 1997; Grossman and Summers, 1980). Given such impairment, how do we decide whether individuals are competent to decide for themselves? Two other sets of factors have been identified as influencing the competency determination process: the risk context, and the knowledge and characteristics of those making the judgment about decision-making capacity.

Contextual risk–benefit factors It is widely accepted that decision-making capacity should be measured separately for different types of decisions, rather than inferring a uniform ability or inability to make all decisions on the basis of a specific diagnosis or a generic cognitive screening test (Grisso and Appelbaum, 1998). Thus there are many types of decision-making competencies, such as competence to give informed consent to research, to give informed consent to medical treatment, to make a will, and to manage finances.

It also is widely held that the threshold for finding an individual capable of making a decision (Grisso and Appelbaum, 1998) and/or the criteria used to make such a finding (Appelbaum et al., 1998; Cournos et al., 1993) should vary depending upon the risks and benefits involved (i.e., when the stakes are higher, a higher level of ability is necessary). Although there is some philosophical debate about this risk-related model of competence (Brock, 1991; Cale, 1999; Wicclair, 1991), it is reflected in major policy statements (American Psychiatric Association, 1998; Keyserlingk, 1995; National Bioethics Advisory Commission, 1998; New York Department of Health Advisory Work Group on Human Subject Research Involving the Protected Classes, 1999; Office of the Maryland Attorney General, 1998). Moreover, many clinicians report adhering to this model in practice (Masand et al., 1998; Umapathy et al., 1999). The application of this model has implications for designing and implementing an overall evaluation process, especially when standards for competence are being set. For example, whether a person is capable of participating in a self-directed mental health services program may depend not only on that person's abilities, but also on the extent to which decision-making assistance is provided and safety net practices are in place so that any adverse events are anticipated and procedures exist for their prevention and management.

Characteristics of the competency evaluator Ideally, individuals making judgments about others' decision-making capability would use only objective evidence on the relevant abilities of the subject and information on the risks and benefits of the situation to make such a judgment. However, an evaluator who places greater value on protecting an individual from potential harm may, for any given risk–benefit scenario, require a higher threshold of ability than another evaluator who tends to err on the side of allowing the person to determine his or her own course (Faden and Beauchamp, 1986). Thus, determinations of competency status inevitably involve value judgments (National Bioethics Advisory Commission, 1998; Roth et al., 1977).

Most studies of decision-making capability conducted to date have focused on the abilities of the individual; however, application of the data from these research studies will inevitably involve the contextual and evaluator elements as well. Currently, there is no “gold standard” or algorithm that can be used by competency evaluators to make a final decision about an individual's decision-making capability (Grisso and Appelbaum, 1998).

Decision-Making Abilities of Individuals with and without M/SU Illnesses

Mental illnesses Most research on decision-making capability in mental health has involved persons who might be expected to have the greatest impairments in this capability—those with chronic psychoses such as schizophrenia and schizoaffective disorder. Individuals with less severe illnesses, such as depression, have less often been the subjects of such research; however, findings to date suggest that this lack of research attention may be appropriate. Mild to moderate depression, for example, appears to have little effect on decision-making capability; even inpatients with depression tend to perform quite well on decision-making capacity interviews (Appelbaum et al., 1999; Grisso and Appelbaum, 1995; Stiles et al., 2001; Vollmann et al., 2003). Severe depression without dementia or psychosis also is not associated with severe impairments in decision-making capability (Bean et al., 1994; Lapid et al., 2003).

The findings of research on decision-making capability involving individuals with psychotic symptoms also are encouraging:

  • 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, understand, and reason). In this respect, individuals with severe mental illnesses, such as schizophrenia, that can affect cognition (Goldman-Rakic, 1994) may have much in common with those having other chronic general medical conditions, such as Parkinson's disease, multiple sclerosis, or brain injury, that can impair brain functioning, memory, and cognition, as well as individuals who are otherwise considered healthy but make poor decisions.
  • There is substantial evidence that understanding of factual information (even among persons with psychotic symptoms) can be improved through interventions.

Difference in decision-making ability Despite methodological heterogeneity and idiosyncrasies, studies over time consistently have found impaired understanding in persons with schizophrenia as a group (Benson et al., 1988; Grossman and Summers, 1980; Irwin et al., 1985; Munetz and Roth, 1985; Roth et al., 1982; Schacter et al., 1994). The most significant study to date, the MacArthur Treatment Competence Study (Grisso and Appelbaum, 1995), found that persons with schizophrenia performed worse than their normal counterparts on every measure of decision-making ability. Using a psychometrically derived threshold score defined as the bottom 5 percent of the normal controls, about 25 percent of those with schizophrenia failed on any given measure of decision-making ability. Further, 52 percent of those with schizophrenia failed on at least one such measure. Subsequent studies have yielded similar findings (Carpenter et al., 2000; Grisso et al., 1997; Moser et al., 2002; Vollmann et al., 2003). Even when the capacity construct is operationalized very differently, the pattern of group impairment is found (Saks et al., 2002).

Despite this unequivocal evidence for impaired decision-making capability in persons with chronic psychoses as a group, there is tremendous within-group heterogeneity (Palmer et al., 2004). For example, in the MacArthur study of acutely ill psychotic patients with symptoms severe enough for psychiatric inpatient admission, nearly half performed adequately on all the subscales relevant to decision-making capability. This heterogeneity is so great that any policy that ignores it will be either too restrictive or too permissive for large proportions of this population. For example, while it may appear from an intuitive standpoint that patients with obvious and severe psychotic symptoms (e.g., actively hallucinating or delusional) may be readily identified as lacking decision-making capability, this is apparently not the case.

Poor decision-making abilities better predicted by cognitive than by psychotic symptoms Some contemporary models of decision-making capacity suggest that certain cognitive abilities (e.g., memory, information processing, and executive functions) underlie specific tasks involved in decisional capacity (Dymek et al., 2001; Marson and Harrell, 1999; Marson et al., 1996, 1997). Among older persons with schizophrenia, diabetes, or Alzheimer's disease, cognitive impairment has been shown to be a significant predictor of decisional capacity (Palmer et al., 2004); this is the case even within diagnostic groups. Consistent with these findings, research has shown that although patients' decision-making performance is correlated modestly with psychotic symptoms, it is correlated more strongly with cognitive dysfunction (Moser et al., 2002; Palmer et al., 2004; Saks et al., 2002). In total, these findings suggest that decisional incapacity is best conceptualized as a reflection of brain dysfunction resulting in cognitive impairment, rather than as a direct by-product of positive symptoms of psychosis, such as hallucinations and delusions. The lay perception of schizophrenia, defined largely by positive symptoms, thus poorly predicts decision-making incapacity. Decisional capacity is a multidimensional construct reflecting the interaction of a wide range of patient characteristics and contextual/environmental factors.

Ability of interventions to improve decision-making capability The ability to understand the factual elements of informed consent has been shown to be highly responsive to interventions aimed at improving performance (Moser et al., 2002; Stiles et al., 2001; Wirshing et al., 1998; Wong et al., 2000). For example, a comparison of routine informed consent and consent enhanced by an educational session for older, chronically psychotic individuals and normal controls found that although the patient group performed worse than the controls on a comprehension test, the patient group that received education to enhance consent showed comprehension similar to that of the normal group (Dunn et al., 2002). In another study, even those who performed very poorly on an understanding scale tended to improve considerably with a remediation session, to the point where their performance as a group became comparable to that of the normal control group (Carpenter et al., 2000). However, few data exist on the effects of such interventions on other decision-making abilities, such as appreciation and reasoning.

Summary The evidence detailed above shows that it is inappropriate to draw conclusions about individuals' capacity for decision making solely on the basis of whether they are mentally ill, or even whether they have a particular mental illness, such as schizophrenia. Many people with mental illnesses—indeed, many with severe mental illnesses—are not incompetent on most measures of competency. Even among patients hospitalized with schizophrenia, the MacArthur researchers found only 25 percent incompetent on any given measure, and only 50 percent if the measures were aggregated (Grisso and Appelbaum, 1998). Other studies have found a higher proportion of individuals with schizophrenia to be competent in decision making (Saks et al., 2002). The evidence shows that poor decision making has a stronger relationship to cognitive problems (e.g., problems with memory, attention, learning, and thought) and deficiencies in higher-level executive functions than to the symptoms of mental illness, such as psychosis. The minority who experience a decline in such cognitive abilities because of their mental illness may not be very different from individuals who have general medical conditions such as cerebrovascular disease, are under the effects of serious emotional stress or in pain, or generally have lower abilities to understand and analyze information. Simple screening instruments are needed to allow evaluators to determine when a more thorough investigation is warranted, and it may be that such screening is just as appropriate when patients are seriously physically ill as when they are seriously mentally ill.

Effects of substance use on decision making and compulsive behavior Individuals with substance-use problems and illnesses can experience varying degrees of impaired decision making, as well as compulsive behaviors, depending upon a variety of factors, including the substance in use, whether use extends to dependence, and whether the individual is in a state of intoxication or withdrawal. For example, although manifestations of intoxication vary greatly—according to the individual, the substance, the dose, the duration of exposure to the drug, the period of time since the last dose, and other factors—individuals intoxicated from use of any substance are likely to have impaired cognition and judgment, including disturbances of perception, attention, and thinking; mood lability; belligerence; and impaired social functioning. These symptoms may be short-lived or persist for hours or days beyond the time when the substance is detectable in bodily fluids (American Psychiatric Association, 2000).

Apart from these known cognitive and behavioral characteristics of intoxication, decision-making capacity has not been examined as closely in substance-use illnesses as in mental illnesses. This is in part because with substance-related problems and illnesses, there are fewer concerns about decision-making capability in a nonintoxicated state than about the ability to maintain a desired pattern of behavior over time (Hazelton et al., 2003; Rosen and Rosenheck, 1999). For example, although nonintoxicated individuals with substance-use problems or illnesses may perform quite well on a typical interview assessing decision-making capability (unless there are other issues, such as dementia due to substance use), they may still relapse in the face of drug-related cravings and cues in their environment. According to the usual criteria, such persons would be considered to have intact decision-making capability. Indeed, this is the way researchers treat decision-making capability for the purposes of enrolling patients in studies of substance-use problems and illnesses (Gorelick et al., 1999).

However, substance dependence is characterized by compulsive alcohol- and other drug-taking behaviors, even in the face of serious adverse consequences (Hyman and Malenka, 2001). Research designed to shed light on these behaviors has produced findings similar to those for individuals with mental illnesses: although nonintoxicated individuals with substance dependence as a group exhibit problems in decision making, there are great within-group differences in decision-making abilities (Grant et al., 2000). Studies of decision making by individuals dependent upon alcohol, cocaine, or methamphetamines, for example, revealed three different decision-making subgroups. The first did not differ from normal comparison subjects in decision-making abilities. The second performed similarly to people with certain types of brain lesions; they made choices that were insensitive to future consequences and favored short-term rewards, even though this strategy resulted in long-term losses. The third subgroup made choices that offered the promise of high rewards, regardless of short-or long-term consequences, and the presence or prospect of obtaining those rewards dominated their behavior (Bechara and Damasio, 2002; Bechara et al., 2002).

Impaired decision making by individuals not mentally ill or using substances As mentioned above, the absence of an M/SU illness does not necessarily mean that one is unimpaired in decision-making ability. There are many situations that stress mentally healthy people's decision-making capacity. They may be under the sway of a strong emotion, desperate because of bad medical news, physically frail in a way that affects their thinking, under severe stress, or in great pain. Any of those factors, and many others, can affect a mentally healthy person's ability to process medical information and make a competent decision.

In addition, even when not under such stress, mentally healthy people regularly process information in ways that are not completely rational. They overvalue vivid memories, misunderstand probabilities, depart from the laws of logic, and let irrational ideas affect their judgment (Kahneman et al. 1982). Indeed, there is a separate branch of cognitive psychology that identifies such reasoning frailties in much of the population (Garnham and Oakhill, 1994; Connolly et al., 2000). Not surprisingly, variable proportions of “normal” research subjects have been found to have deficits in decision-making capability (Davis et al., 1998; Roth et al., 1982).

In short, not all, but also not only, individuals with M/SU illnesses are sometimes less than competent in their decision making.

Risk of Dangerousness

As noted above, fear of individuals with severe mental illnesses because of their perceived greater dangerousness is a significant factor in the development of stigma and discrimination (Corrigan et al., 2002; Martin et al., 2000). However, findings of population-based epidemiological and cohort studies show that the vast majority of individuals with a mental illness and no concurrent substance use pose no greater risk of violent behavior than those without M/SU illnesses.15

The empirical literature on violence and mental illnesses is copious. Samples and methods differ greatly across studies, making comparisons difficult and rendering each study susceptible to challenge on one basis or another. The following summary of the data is illustrative of the major studies, rather than exhaustive, and does not attempt a detailed methodological critique.

The first large-scale epidemiological data on the prevalence and incidence of violence (assaultive behavior) among individuals with M/SU illnesses were produced in the early 1980s as a part of the Epidemiological Catchment Area (ECA) study, which was designed primarily to determine the prevalence of untreated psychiatric illnesses in community populations across the United States.16 A secondary analysis of these data (Swanson, 1994) found that the vast majority of individuals with mental illness who had not qualified for a substance-use or -dependence diagnosis in the past year were not violent. Even among individuals with major mental illnesses (such as schizophrenia) having no co-occurring substance-use diagnosis, the proportion committing an act of violence was only somewhat higher than that in the population without mental illness. Only about 7 percent of those with a major mental illness (but without a substance-use or dependence diagnosis) had engaged in any assaultive behavior in the preceding year, compared with slightly more than 2 percent of individuals without any major psychiatric diagnosis. Individuals with less-severe mental illness were at no greater risk of committing an act of violence than those with no mental illness. Because major mental illness is a relatively rare occurrence, individuals with mental illnesses (but without a substance-use or -dependence diagnosis) account for a very small proportion (about 3–5 percent) of the risk of violence in a community.

Substance-use illnesses by themselves and in combination with major mental illnesses were found to be related more strongly to violence. The ECA study found a 1-year violence prevalence rate of 19.7 percent among respondents with a substance-use or -dependence diagnosis without the presence of a major mental illness, and rate of 22 percent among those with dual mental and substance-use or -dependence diagnoses. Individuals with substance-use or -dependence diagnoses alone represented 26–27 percent of the risk of violence in the community, while those with both diagnoses contributed a much smaller share of the risk (5–6 percent) because of their smaller numbers.17

The ECA study also found that the presence of severe M/SU illnesses is only one factor helping explain (and statistically predict) violence. Other factors, such as age, gender, and socioeconomic status, also are associated with violent behavior.

A number of subsequent studies have examined cohorts selected from the general population and followed them at one or more points in time to determine their rates of violence and mental illness. These studies have tended to be performed in countries other than the United States—Denmark (Brennan et al., 2000), Sweden (Hodgins and Janson, 2002), New Zealand (Arsenault et al., 2000), and Finland (Tiihonen et al., 1997)—where comprehensive databases are available. Many of these studies focused on individuals with psychotic illnesses and major depression. All found a link between individuals with these illnesses and violence: persons with these severe illnesses had 2–27 times higher rates of violence, depending on diagnosis and gender, compared with persons without such illnesses. Many of the studies controlled for substance-use diagnoses, socioeconomic status, and other variables likely to inflate rates of violence (Monahan, 1981). However, studies from countries with lower overall rates of violence than the United States, such as the Scandinavian countries where many of these studies were conducted, are likely to show a greater effect of mental illnesses, and hence the results cannot be extrapolated directly to this country (Simpson et al., 2003). In the United States, however, an epidemiological sample in an economically impoverished, largely immigrant neighborhood in New York City (Link et al., 1992) found that a group of current psychiatric outpatients and former psychiatric inpatients had significantly elevated rates of reported violence compared with the never-treated members of the study sample.

In contrast to the above epidemiological and cohort studies, the MacArthur Violence Risk Assessment Study, the largest prospective study to date of a clinical sample (i.e., newly discharged psychiatric inpatients) found that persons with severe mental illnesses were at no greater risk for community violence than nonhospitalized persons in their neighborhoods, as long as they did not have concurrent symptoms of a substance-use diagnosis. However rates of substance-use problems and illnesses were significantly elevated in the patient sample compared with the community comparison group (31.5 percent at the first 10-week follow-up versus 17.5 percent) (Steadman et al., 1998). Other studies that attempted to control for a co-occurring substance-use diagnosis, however, including the ECA analysis, found that its presence did not fully account for the effect of mental illnesses on violence. Further emphasizing the discrepancies in the data, the MacArthur study found that persons with schizophrenia had the lowest violence risk of the major diagnostic categories, whereas several other studies have found schizophrenia to have the strongest relationship with violence (Arsenault et al., 2000; Wessely, 1997). Two studies that followed patients after their first episode of schizophrenia found an increased risk of violence compared with other psychiatric patients (in England [Wessely, 1997]) and compared with a matched sample from the general population (in Australia [Wallace et al., 2004]).

In summary, although findings of many studies suggest a link between mental illnesses and violence, the contribution of people with mental illnesses to overall rates of violence is small. Based on the ECA data, Swanson (1994) and colleagues estimated that roughly 3–5 percent of violence in the United States could be attributed to persons with mental illnesses. Moreover, results of studies from England and New Zealand indicate that in those countries, the percentage of homicides accounted for by persons with major mental illnesses has fallen in recent decades despite policies of deinstitutionalization that have placed more people with severe mental illnesses in the community (Monahan, 1981; Shaw et al., 2004; Taylor and Gunn, 1999). Data also suggest that most violence committed by persons with mental illnesses is directed at family members and friends rather than at strangers (Simpson et al., 2003; Steadman et al., 1998) and tends to occur in the perpetrator's or the victim's residence rather than in public places (Steadman et al, 1998). Indeed, persons without mental illnesses are more likely to attack strangers and to be violent in public (Shaw et al., 2004; Steadman et al., 1998). Thus while there may be a causal relationship between mental illnesses and violence, the magnitude of the relationship is greatly exaggerated in the minds of the general population.


Individuals with substance-use illnesses, and to a lesser extent those with mental illnesses, are more likely to be forced or coerced into treatment than are individuals with general medical illnesses.19 Coerced treatment sometimes occurs as the result of a legal order; sometimes as the result of pressure from other formal organizations, such as employers or social agencies; and at other times through informal pressures exerted by family members or friends. Forms of coercion exist along a continuum, ranging from friendly persuasion, to interpersonal pressure, to control of resources, to force. How individuals perceive this coercion is variable and is influenced by the nature of the coercive process, that is, the extent to which they view those who are coercive as acting out of concern for them, treating them fairly, with respect, and without deception; providing them a chance to tell “their side of the story”; and considering what they have to say about treatment decisions (Dennis and Monahan, 1996). Within the legal system, specialty drug or mental health courts offer individuals with M/SU problems or illnesses the option of treatment as an alternative to criminal processing or sentencing. This and other types of coercion are intended to compensate for poor decision making, compulsive behavior, or a risk of danger to oneself or others. These practices generate great controversy and raise the question of how patient-centered care with the patient as the source of control can and should be provided in their presence.

Coercion and Mental Illnesses

Until relatively recently in the history of the treatment of mental illnesses, coercive interventions were the norm. In the United States, the first statute authorizing voluntary hospitalization of persons with mental illness was not enacted until 1882, and even through the 1960s, the vast majority of psychiatric hospitalizations took place on an involuntary basis. (Voluntary hospitalizations accounted for only 10 percent of admissions in 1949 and 24 percent in 1961 [Brakel, 1985].) Once hospitalized, even voluntarily, patients were assumed to have no right to decide whether to accept the treatment chosen for them. And under provisions for conditional or probationary discharge, many patients in the public system of care could be called back to the hospital at their psychiatrist's discretion (Lindman and McIntyre, 1961).

There are several reasons for this reliance on involuntary hospitalization and treatment, and they relate to the themes discussed earlier. Violence committed by some individuals with mental illnesses led to a general misperception of all such persons as dangerous and thereby in need of confinement. This attitude was compounded by the belief that mental illnesses usually rendered persons incompetent to make decisions for themselves; asking them whether they desired hospitalization or treatment was therefore regarded as pointless. The convenience for caregivers and treaters of making decisions for rather than with persons with mental illnesses may also have contributed to the use of coercive approaches.

In the 1960s and 1970s, as the rights of underrepresented groups in general received attention, involuntary commitment statutes were narrowed in every state to limit nonconsensual hospitalization to persons who manifested clear dangerousness to themselves or others. Procedures were revamped simultaneously to afford protections, such as judicial hearings and assistance of an attorney, characteristic of the criminal process. By the 1980s, many states—often prompted by judicial decisions—had instituted substantial rights for even involuntarily hospitalized patients to refuse unwanted treatment. A large number of these states required a formal finding of decisional incapacity before a patient's decisions could be overridden (Appelbaum, 1994).

Compared with the situation in 1960, today's mental health system is substantially less coercive. But coercive approaches remain significant features of the system, and as the majority of treatment episodes have shifted to the community, new mechanisms for pressuring or compelling persons with mental illnesses to undergo treatment have evolved (Monahan et al., 2001b). These developments have been motivated by the concerns about impaired decisional capacity and dangerousness described above, as well as by more recent concerns about reducing the burden on the criminal justice system for treating mental illnesses and addressing the needs of untreated persons with severe mental illnesses.

Outpatient commitment is probably the most discussed of the community-based mechanisms for compelling persons with mental illnesses to receive care (Swartz and Monahan, 2001).20 A majority of states now have statutes permitting commitment to outpatient treatment (Judge David L. Bazelon Center for Mental Health Law, 2000a). Criteria in the newer statutes are typically broader than those for inpatient commitment, often being predicated on the likelihood that without treatment, the person will deteriorate to the point that standards for inpatient commitment will be met. In most statutes, this prediction must be based on a pattern of previous deterioration after release from the hospital. For persons who are found eligible for outpatient commitment, courts can require compliance with a treatment plan, including outpatient visits and medication. Although findings of a number of uncontrolled studies suggest positive effects from outpatient commitment (e.g., reduced rates of hospitalization), the only two controlled studies had methodological problems that rendered their results ambiguous (Appelbaum, 2001).

While outpatient commitment has garnered the most attention, with critics claiming both that it unfairly extends the state's coercive powers and that it would be unnecessary if enough high-quality outpatient services existed (Brown, 2003; Judge David L. Bazelon Center for Mental Health Law, 2000b), less visible approaches can be more coercive and may be more common as well. This is because outpatient commitment statutes are generally without effective enforcement mechanisms. Statutes may allow noncompliant persons to be picked up by the police and brought for evaluation to a mental health center, but they generally do not permit involuntary administration of medication or hospitalization unless the usual criteria required for those interventions are met.

The criminal justice system also exercises coercion in several ways. Persons who have been arrested and convicted of an offense can be required by the terms of their probation or parole to participate in treatment of their mental illness, at the risk of being incarcerated if they fail to comply. The extent and effectiveness of this process are essentially unstudied (Skeem et al., 2003). In addition, the last decade has seen the growth of mental health courts in many jurisdictions, modeled on specialty drug courts that are common nationwide (Steadman et al., 2001). Defendants identified as having a mental illness may be given the option of referral to a mental health court prior to or following trial; ongoing compliance with treatment may be required to avoid incarceration. As yet, there is no unitary model for mental health courts, and as with interventions by the probation and parole systems, their effectiveness is unknown (Redlich et al., 2005; Wolff, 2004).

More-informal means of leveraging persons with mental illnesses into treatment also exist but are less visible (Monahan et al., 2001b). These include control of their money by family members or formally appointed representative payees. The latter can be designated by the Social Security Administration to receive payments on behalf of recipients who are believed to be too impaired to manage their money; the Veterans Administration has a similar mechanism. Recent data suggest that formal and informal money managers are common for persons with severe mental illnesses, and that control over a person's finances is often used in an attempt to promote compliance with treatment (Luchins et al., 2003; Monahan et al., 2005; Redlich et al., 2005). Access to housing may similarly be conditioned on treatment involvement, even where laws would appear to preclude such conditions (Monahan et al., 2001b, 2005).

Overall, the degree of coerciveness in the current mental health system may be underestimated and the source of the majority of coercive pressures misidentified. A recent cross-sectional study of the extent to which four types of coercion were experienced by chronically mentally ill individuals receiving mental health services in public-sector settings in five states during 2002–2003 found that across all sites, 44 to 59 percent of individuals experienced at least one of four types of coercion into treatment. Making housing contingent upon compliance was the most frequently used form of leverage (experienced by 23–40 percent of individuals). Other types of leverage and the frequency with which they were encountered across sites were use of criminal sanctions (15–30 percent), outpatient commitment (12–20 percent), and withholding access to money (7–19 percent) (Monahan et al., 2005). Questions remain about both the extent to which such practices are used more broadly and their impact—both positive and negative—on persons subjected to them.

Coercion and Substance-Use Illnesses

The majority of individuals entering treatment for substance-use illnesses do so as a result of coercion (Weisner and Schmidt, 2001). As is the case with mental health care, this coercion takes many forms and can be thought of as ranging along a continuum. Thus coercion ranges from subtle forms, as when an individual acts to please family, friends, or significant others, to more overt forms, such as coercion by an employer through a stated risk of loss of employment, or a situation in which an individual is threatened with the loss of custody of a child or liberty and the establishment of a criminal record, as is the case in the criminal justice system. In the private sector, for example, many clients enter treatment with some degree of coercion from the workplace, either by employers, employee assistance programs, or unions (Polcin and Weisner, 1999; Roman and Blum, 2002; Weisner et al., 2002). These referrals are due to positive drug tests on the job or to alcohol or drugs interfering with job performance. Public benefit programs also exercise coercion. For example, local welfare agencies sometimes exert pressure on individuals with alcohol or drug problems to receive treatment for their substance use in order to maintain their benefits and become ready to work (Capitani et al., 2001).

In addition, most states have mechanisms in place for involuntary civil commitment of individuals with substance-use illnesses and involuntary treatment mechanisms in the criminal justice system (e.g., through drug courts) (Hall and Appelbaum, 2002). Drug courts are increasing in number throughout the country. They focus on criminal behavior related to illicit drugs (rather than alcohol) and are designed to reduce the number of nonviolent substance-using offenders who are incarcerated, as well as potentially to provide better outcomes (Longshore et al., 2005; Marlowe, 2003, Marlow et al., 2004). Drug courts rely upon the identification of substance-use offenders during the pretrial or presentencing period and in return for a guilty plea offer these individuals the option of receiving community-based treatment for their substance use in lieu of incarceration (Belenko, 1999Belenko, 2002; Longshore et al., 2005; Marlowe et al., 2004). Successful treatment (completion of a year or more) results in dismissal of the original charges, while failure to complete treatment results in immediate incarceration, since the individual has already pled guilty. In some states, such as California, specific legislation exists to offer treatment for individuals arrested for nonviolent felony offenses related to alcohol or drug use.

Research on the effects of coerced treatment (through the legal system, the workplace, welfare, and informal pressure) for substance-use illnesses has yielded mixed results but on the whole has found higher retention and similar outcomes relative to voluntary clients (Farabee et al., 1998; Lawental et al., 1996). A review of 18 longitudinal studies of the effectiveness of compulsory substance-use treatment published between 1988 and 2001 found that compulsory treatment (legal, formal, informal, and mixed) generally achieved better treatment retention, but no reduction of substance use or criminal behavior (Wild et al., 2002). This same review identified the need for stronger research and analytic models to illuminate the utility of compulsory treatment. Further, agreement needs to be reached on appropriate measures of the outcomes of coerced treatment; these can range from increased attendance at treatment appointments for outpatients; to the absence of illicit drugs in urine/blood; to improved functioning in family, work, and educational roles. Finally, when patients are mandated to treatment, it is not always clear that they are getting the most appropriate treatment, or that they are aware of the consequences of not doing well in treatment. Thus, issues relating to patient-centered care and decision making in health care for both mental and substance-use conditions are important here. When patients make choices between treatment and criminal justice sanctions, it is essential that they be informed about the treatment they will receive, have as much choice in the decision as feasible, and be informed about the “usual” outcomes of that treatment so they can make an informed decision.


The phenomenon of coercion, like the consequences of stigma and discrimination, has implications for the implementation of the Quality Chasm rule of patients being able to “exercise the degree of control they choose over health care decisions that affect them.” Despite these difficulties, however, the committee finds that the aim of patient-centered care applies equally to individuals with and without M/SU illnesses. To compensate for the obstacles presented by coercion, as well as those posed by stigma and discrimination, the committee finds that health care clinicians, organizations, insurance plans, accrediting bodies, and federal and state governments will need to undertake specific actions to actively support all M/SU patients' decision-making abilities and preferences, including those of individuals who are coerced into treatment.


Our knowledge of how stigma develops, how it affects stigmatized individuals, and how it can be eradicated is incomplete but growing (Corrigan, 2004; Farina, 1998). Many advocacy, governmental, and public service organizations in the United States and elsewhere have used this knowledge to establish campaigns to combat the stigma of M/SU illnesses, usually through the use of one or more of the following strategies: (1) educating the public about M/SU illnesses; (2) creating opportunities for the public to have contact with individuals with these illnesses; (3) protesting against erroneous, stereotyped portrayal of these individuals by the media21; and (4) pursuing legal action to guarantee rights to health care, housing, employment, and other justice-related concerns (Corrigan and Penn, 1999; Smith, 2002). These initiatives include those of SAMHSA's Resource Center to Address Discrimination and Stigma (SAMHSA, 2000); SAMHSA's National Addiction Technology Transfer Centers Network initiative to develop and disseminate a training module on stigma for treatment providers, and to collect and distribute research-based information on fighting the stigma of drug and alcohol dependence (Woll, 2001); Faces & Voices of Recovery, a national recovery advocacy campaign and organization that promotes public policies and actions to end discrimination against individuals with substance-use illnesses22; the National Alliance for the Mentally Ill's (NAMI) “In Our Own Voices” and “StigmaBusters” initiatives; the National Institute of Mental Health's (NIMH) Outreach Partnership Program (NIMH, 2005); and the efforts of many other consumer and advocacy organizations, such as the National Mental Health Association and the National Council on Alcoholism and Drug Dependence, that fight stigma by using a combination of the above strategies. Some consumers report that becoming involved in these initiatives helps them cope with the adverse effects of stigma and develop feelings of self-empowerment and self-enhancement (Wahl, 1999).

The committee applauds and supports the continuation of these campaigns. However, national, state, and local initiatives to eliminate stigma and discrimination often are targeted at changing the attitudes of society at large. Research has shown that public attitudes are not the sole determinant of behaviors; behaviors are also influenced by a number of personal and situational features present in the interactions of stigmatized individuals with others. Thus, to combat the effects of stigma on patient-centered care, additional actions are required of (1) health care organizations and clinicians providing treatment services; (2) insurance plans that shape patient–provider relationships; and (3) public policy makers and quality oversight organizations, who are able to address other situational conditions that foster and permit stigmatizing attitudes and behaviors at the locus of care delivery.

Combating Stigma and Supporting Decision Making at the Locus of Care Delivery

Health care clinicians, organizations, insurance plans, accrediting organizations, and government bodies can counter the adverse effects of stigma on patient-centered M/SU health care by taking several concrete actions. These include (1) endorsing and supporting decision making by M/SU health care consumers as the default policy in their organizational polices and practices; (2) involving M/SU health care consumers in service design, administration, and delivery; (3) providing decision-making support to all M/SU health care consumers, including those under coercion and making decisions about diversion programs; and (4) supporting illness self-management practices for all consumers and formal self-management programs for individuals with chronic illnesses.

Endorsing and Supporting Consumer Decision Making in Organizational Polices and Practices

All organizations have cultures, defined as the dominant and commonly held beliefs, attitudes, values, and behaviors that shape organizational goals, policies, and procedures (Schein, 1992). In health care, the effect of an organization's beliefs, attitudes, values, and behaviors on the practices of its individual members is so widely accepted that substantial analysis and tool development have taken place to help organizations create, for example, “cultures of safety” (Bagian and Gosbee, 2000; Wong et al., 2002). Desired cultures can be consciously built and objectively assessed. Recently, for example, the Agency for Healthcare Research and Quality (AHRQ) developed a survey instrument for use by hospitals in assessing the extent to which they have been effective in creating an internal culture of safety (AHRQ, 2005). Organizations similarly can create cultures that endorse and support consumer decision making through their leadership and formal policies, and through employee education in the adverse effects of stigma and the capabilities of M/SU consumers to engage in decision making.

Leadership and policy practices Effective leadership within an organization is essential to achieving cultural change (Davenport et al., 1998; Heifetz and Laurie, 2001). If patient-centered care is to be provided and decision making by consumers of M/SU services is to be ensured, leaders within treatment organizations must see that their organizational culture actively supports these practices. Organizational leaders can take many different actions to create such a culture. First, organizational managers and leaders can demonstrate behaviors that recognize and support consumer decision making in their interactions with other organizational employees. As noted above, each patient's right to make treatment decisions and receive support in doing so should be clinicians' and organizations' default policy unless there is evidence of a danger to the patient or others, or the patient has been determined to be incompetent to make decisions. Organizations' formal, written policy documents, such as mission statements and policies and procedures manuals, can explicitly endorse and specify this default policy and other organizational actions to support consumer decision making. If the organization has a consumer bill of rights, it can include content on consumer decision making. The orientation of new providers and ongoing training of existing providers also should include content on the adverse effects of stigma on patients' self-efficacy and recovery, and reaffirm organizational polices and practices that support patient decision making.

Continuing education of clinicians and other service personnel Because it is not reasonable to expect that all clinicians (especially those newly licensed) will come to their practice settings possessing all of the necessary knowledge and skills, organizations need to provide for their clinicians' ongoing training (IOM, 2004b) and education (see Chapter 7). Education has been shown to decrease stigma and improve clinicians' attitudes regarding persons with mental illnesses (Corrigan and Penn, 1999; Farina, 1998). Empirical evidence also indicates that having credible and competent leaders deliver this education is important if some of these messages (e.g., those related to stigma) are to be taken up by learners (Corrigan et al., 2001). The education and training provided should include, for example, content on patient-centered care and decision making, erroneous beliefs about dangerousness, and the clinician's and the organization's need to tolerate “bad” choices and achieve the right balance between “beneficence” and autonomy (Murdach, 1996).

Tolerance for “bad” decisions23 The Quality Chasm report (IOM, 2001) notes that among all consumers, there can at times be a tension between the aim of providing patient-centered care and that of providing effective (evidence–based) care. For example, a patient may have received information on and desire to receive a particular type of treatment, but the provider may know that evidence of the treatment's effectiveness is lacking or inconclusive, or has shown the treatment to be ineffective. The provider may have evidence that an alternative treatment may be more or equally effective at lower cost. The Quality Chasm report notes that in such instances, health care institutions, clinicians, and patients need to work together to reconcile competing and conflicting aims through shared decision making.

A more difficult situation exists when patients, particularly individuals with severe mental illnesses, propose a course of action that their mental health professional believes to be misguided. Without guidance in such situations, clinicians may react in ways that may reflect their own values more than the patient's, and thereby undermine patient-centered care. For example, some clinicians may believe that the apparent irrationality of a patient's treatment decision raises questions about the individual's competence to make such decisions, and use this to justify excluding the patient from decision making about his or her care. Others may formally respect their patient's autonomy and decision making but do so in a way that distances them from the patient and his or her decisions. For example, when a patient disagrees with a mental health professional about the course of treatment, the professional may “respect” the patient's decision but formally or informally withdraw from the treatment partnership. Patient decision making is preserved, but the treatment relationship is weakened, and the patient has in effect been punished for disagreeing with the mental health professional (Stefan, 2004).

In contrast, in her autobiographical book An Unquiet Mind, Kay Redfield Jamison paints a vivid portrait of patient-centered care as she describes her relationship with her psychiatrist, who remained steadfast through her many disagreements with his recommendations that she take lithium for her bipolar illness. While Jamison does not represent a “typical” patient, her concerns, her reluctance to pursue a recommended course of treatment, and the concomitant risks are not unusual. Moreover, the manner in which she was involved in decision making is a strong example of patient-centered care.

Jamison explains that over a 1-year period, she started and stopped taking lithium multiple times:

… I still somehow thought that I ought to be able to carry on without drugs, that I ought to be able to continue to do things my own way. My psychiatrist, who took all of these complaints very seriously—existential qualms, side effects, matters of value from upbringing—never wavered in his conviction that I needed to take lithium…. (Jamison, 1995:102)

Her psychiatrist stayed with her, recording her decisions and their consequences and continuing his attempts to help her. He never took steps to commit her involuntarily24 or medicate her against her will, although her “depressions were getting worse and far more suicidal” (p. 103). Jamison eventually decided that she needed to take lithium and, because she had made the decision herself after struggling with it, has continued to do so despite experiencing adverse effects. Her psychiatrist discussed and persuaded but did not coerce. Instead, he listened to, respected, and responded to her concerns, exemplifying being “respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions” (IOM, 2001:40).

Jamison's experience can be contrasted with that of a patient involved in the research of the MacArthur Research Network on Mental Health and the Law on coercion. That experience illustrates the opposite of Jamison's—the absence of patient-centeredness:

I talked to him [the therapist who had arranged for his commitment] this morning. I said, “You … didn't even listen to me. You … call yourself a counselor…. Why did you decide to do this instead of … try to listen to me and understand … what I was going through.” And he said, “Well, it doesn't matter, you know, you're going anyway.” He didn't listen to what I had to say…. He didn't listen to the situation…. He had decided before he ever got to the house … that I was coming up here. Either I come freely or the officers would have to subdue me and bring me in. (Bennett et al., 1993:298)

It is important to be clear about what patient-centered care does and does not mean. Patient-centered care does not mean that professionals must agree with all of the patient's decisions. Nor does it mean that a provider should abandon a patient if the patient's decisions disagree with the provider's own. A Michigan policy on self-directed care explicitly provides that “self-determination shall not serve as a method for a [community mental health support program] to reduce its obligations to the consumer, or to avoid the provision of needed specialty mental health services or supports” (Michigan Department of Community Health, 2003). Patient-centered care does involve supporting the patient through disagreements about treatment decisions, asking about the patient's goals for recovery, and factoring these into shared decision making for the recovery process.

Taking these and other actions to endorse and support the primacy of consumer decision making in treatment polices and practices lays the groundwork for implementing three additional practices that can support consumer decision making more directly: (1) involving M/SU health care consumers in service design, administration, and delivery; (2) providing decision-making support to all M/SU health care consumers; and (3) supporting illness self-management practices for all consumers and formal self-management programs for individuals with chronic illnesses.

Involving Consumers in Service Design, Administration, and Delivery

Contact with individuals with mental illnesses improves health care workers' attitudes toward them and decreases negative stereotyping (Corrigan et al., 2001; Kolodziej and Johnson, 1996), including erroneous perceptions of dangerousness (Corrigan et al., 2002; Farina, 1998). The same is true for the public at large (Rasinski, 2003). Contact is most effective in countering erroneous beliefs and stigma when participants have equal status, interact in a highly collaborative manner, have personal rather than formal interactions, and have support from the institution in which the contact occurs (Corrigan and Penn, 1999; Kolodziej and Johnson, 1996). Equal status is facilitated when individuals work together on specified activities giving those in a stigmatized group the opportunity to apply and demonstrate their own knowledge and skills. Such contact can be achieved by involving individuals with M/SU illnesses in administrative, clinical care delivery, and policy-making roles.

Consumer participation in service design and administration Consumers have served in key administrative and service design roles in a number of M/SU health care organizations. For example, they have served on key policy-making bodies that plan, design, and oversee internal performance measurement and quality improvement (Hibbard, 2003; Sabin and Daniels, 1999, 2001), and that design and implement mechanisms for soliciting consumer feedback on the quality of delivered services (Sabin and Daniels, 1999). Serving on bodies that develop and oversee utilization management policies (when the care-providing organization is also a health plan) is another way for consumers to participate in service design and administration (Sabin et al., 2001). These mechanisms for direct involvement in service design and administration are more effective in reducing stigma than simply having consumers serve on separate advisory councils because they provide opportunities for consumers to work side by side with care providers in a collaborative manner.

Consumers as service providers People with M/SU illnesses have for many years served as providers of treatment and recovery support services by leading and participating in self-help or mutual help groups such as Alcoholics Anonymous (Humphreys et al., 2004); serving as case managers, counselors, crisis workers, job coaches, and residential managers; and providing care in a variety of other positions supporting psychiatric rehabilitation and recovery (Kaskutas and Ammon, 2003–2004; Mowbray et al., 1997; Solomon and Draine, 2001). These positions range from those that are unpaid, to those that are paid but created or set aside exclusively for consumers (available only to people with mental illnesses), to those that are paid and competitive (available to consumers and nonconsumers) (Cook, 2004).

Consumers also serve as providers in peer support programs that help individuals with severe M/SU illnesses achieve recovery. Georgia's Peer Support program, for example, employs individuals who (1) are current or former recipients of mental health services for a major mental illness, (2) openly identify themselves as consumers, (3) have had advocacy or advisory experience, (4) have made a demonstrated effort at self-directed mental health recovery, and (5) have successfully passed a written and oral examination after completing a 2-week training program. The Georgia Division of Mental Health, Developmental Disabilities, and Addictive Diseases trains and certifies these peer specialists to model competence and recovery by providing (under the direct supervision of a mental health professional) structured, scheduled activities that promote socialization, recovery, self-advocacy, development of natural supports, and maintenance of community living skills to individuals with “serious and persistent” mental illnesses. Their primary responsibility is to assist consumers in regaining control over their recovery process and developing the attitudes and skills that facilitate recovery. They do this through a variety of activities ranging from helping consumers create a wellness recovery action plan, to supporting consumers in their vocational choices, to informing them about community and other supports and how to utilize them in the recovery process (Sabin and Daniels, 2003).

SAMHSA's Recovery Community Services Program similarly uses peer support to help consumers of substance-use treatment services prevent relapse, promote timely reentry into treatment when relapse occurs, and aid in achieving sustained recovery and an enhanced quality of life. Grants made through this program support peer-to-peer recovery assistance, including help in securing housing, education, and employment; building constructive family and other personal relationships; managing stress; participating in alcohol- and other drug-free social and recreational activities; and obtaining services from multiple systems, such as the primary and mental health care, child welfare, and criminal justice systems (SAMHSA, 2004a).

Peer support programs are discussed further below as an important mechanism for increasing consumers' self-efficacy beliefs and decision-making capabilities.

Providing Decision-Making Support to All M/SU Health Care Consumers

Supporting consumer decision making means providing consumers with (1) a choice of treatments and providers; (2) information about the benefits and risks of different treatment options; (3) assistance in making choices; and (4) for those individuals with significantly impaired cognition or diminished self-efficacy beliefs, compensatory mechanisms such as peer support programs and advance directives.

Providing consumers with real choices Decision making is less relevant if the only choice presented is that between one treatment and no treatment. As evidence presented in Chapter 5 shows, there may be multiple different therapeutic approaches for a given M/SU illness—different medications, medication alone without psychotherapy, psychotherapy alone without medication, and medication combined with psychotherapy (frequently shown to be most effective). Some of these approaches have more proven effectiveness than others; others may have less evidence to support their effectiveness but offer the promise of fewer side effects. Because of this and other factors, patient preferences are likely to differ. The Quality Chasm report notes, for example, that among all patients, some people are “risk averse,” while others may choose a riskier intervention despite a lesser likelihood of benefit.25 Moreover, patients with more chronic medical conditions often have been shown to be more willing to take risks in the hopes of achieving better health. Their preferences also have been shown to be motivated in part by a concern for social health (defined as the ability to develop, maintain, and nurture major social relations), not solely by a desire for physical or mental health (Sherbourne et al., 1999).

When consumers are coerced into treatment or have no choice of provider, offering them a choice of treatment is especially important. In general, few inpatients—whether voluntarily or involuntarily admitted—choose the psychiatrist, therapist, or nurse who is assigned to their care. A similar situation occurs for the many individuals who receive care in a clinic setting. In these inpatient and outpatient settings, individuals receive care from the providers scheduled to provide care on that day. For patients receiving care from a specialized team (e.g., an assertive community treatment [ACT] team), there is typically only one team available. With respect to choice of treatments, rules for involuntary treatment of committed patients vary across states, with some states (but not all) precluding involuntary treatment with medications unless patients are first declared incompetent to make decisions about their care. Whatever rule is in effect, and regardless of whether patients are able to choose their providers, individuals can still exercise choice by selecting among different treatment approaches, medications, and strategies for treating and recovering from their illness. Patients should be supported in expressing their treatment preferences and having them incorporated into treatment decision making. Supporting decision making and treatment preferences requires that patients have information on the various treatment options available.

Providing information about the benefits and risks of different treatment options Information needs to be available to consumers to support their decision making and to promote their exercise of choice. Clinicians and their sponsoring health care organizations should provide patients with information (in a user-friendly format) about the comparative effectiveness of different treatment approaches (regardless of whether those approaches are offered by the clinician or health care organization) and any risks/contraindications/side effects that may be present given the patient's clinical profile. When information on the comparative effectiveness of different treatment approaches is not available (see the discussion of the limited evidence base in Chapter 4), this lack of information should be made known to the consumer. Patients should also be given information on whether a specific therapeutic approach is available from their clinician, organization, or health plan.

Providing decision support to all patients It is widely acknowledged that all clinicians need support in their clinical decision making to stay abreast of recent developments in therapeutics. If patient are truly to share in clinical decision making, it is likely that they, too, will need information to support that decision making. However, decision-support tools are just beginning to be used in general health care to help consumers select among different treatment options for a limited number of medical conditions, for example, problems with vision or specific diseases such as benign prostatic hypertrophy (Stanton, 2002). Consumers of M/SU health care services also need such decision-support tools, although their availability is currently very limited.

In the interim, clinicians and health care organizations can support all M/SU consumers in their decision making by (1) providing them with the information described above (in a user-friendly format); (2) avoiding undermining their decision-making abilities (verbal support is effective in increasing individuals' belief in their ability to make treatment decisions, or their self-efficacy; see the discussion earlier in this chapter [Bandura, 1997b]); and (3) appreciating the changing nature of consumers' decision-making preferences. The Quality Chasm report, for example, underscores that shared decision making is a dynamic process that changes as patients' circumstances and preferences change. As evidence presented in the preceding section indicates, decision-making capacity appears to be less a fixed, unchangeable trait and more a state dependent on a variety of factors. The capacity for decision making should therefore be viewed not as an all-or-nothing state, but as the result of the interplay of multiple functional abilities that can vary according to the context and over time. For example, a person may understand a consent form one day but not the next when he or she is distracted, confused, under duress, in pain, or delirious. Similarly, a person may be impaired in the acute phases of a severe mental illness, such as schizophrenia or bipolar illness, but may return to normal when in remission. The Quality Chasm report also acknowledges that patients vary in their preferences and views about how active they want to be in decision making: some patients desire a very active role, while others may prefer to delegate decision making to their providers or a proxy.

Providing stronger decision support mechanisms for individuals with significantly impaired cognition or diminished self-efficacy beliefs Peer support services and advance directives can be used to assist individuals with significantly impaired cognition or diminished self-efficacy beliefs.

Peer support programs As noted earlier in this chapter, evidence shows that individuals' belief in their self-efficacy can be increased through four mechanisms: (1) their own success in mastering a task or activity, (2) observation of others' success in the same area, (3) verbal persuasion and social influences, and (4) individuals' own physiological and affective states. Vicarious experience is particularly powerful when the observer can identify with some of the characteristics of the person performing the activity. Observing the successes of a model with whom one identifies enhances one's belief in one's own capabilities. Empowerment and belief in one's self-efficacy are also influenced by the verbal encouragement of others (Bandura, 1997b).

The positive effects of seeing or visualizing people similar to oneself successfully perform specific activities are proportionate to the degree of similarity between the person performing the activities and the observer. Modeling that conveys effective coping strategies by individuals who begin timorously, but who gradually overcome their difficulties through persistent efforts can be more helpful than “masterful” models, that is, individuals who perform calmly and faultlessly. Observers are persuaded that if others can do it, they can too (conversely, observing the failures of others similar to themselves decreases the self-efficacy beliefs of observers) (Bandura, 1997b).

Peer support programs involve individuals who serve as models of self-efficacy. These programs provide verbal persuasion and social influences, as well as the opportunity to observe others' success in facing the same challenges. Peer leadership has been found to be a key component of successful self-management programs (Lorig et al., 2001). Peer support programs also are identified in the Chronic Care Model of illness management (described in Chapter 5) as a useful mechanism for supporting patients in their illness self-management (Bodenheimer et al., 2002b). Studies of illness self-management programs have shown that when peers are well trained and given a detailed protocol, they teach as well as and possibly better than health professionals (Lorig and Holman, 2003).

Peer support programs are a strong component of mental health care, as described above. Peer-based support services in recovery from substance-use problems and illnesses have an even longer history, extending from the eighteenth century to the present and encompassing Native American “recovery circles”; fraternal temperance societies; and social support provided within inebriate homes and asylums, half-way houses, and self-managed recovery homes (White, 2002, 2004). Twelve-step mutual support groups such as Alcoholics Anonymous (AA), Narcotics Anonymous (NA), and Cocaine Anonymous (CA) are used as a routine adjunct to treatment and are relied on as a form of long-term aftercare for many alcohol and drug treatment programs today (McElrath, 1997; Troyer et al., 1995). The efficacy or effectiveness of the largest addiction-oriented mutual aid/self-help group, AA, has been the focus of increased research and several reviews in recent years (e.g., Emrick et al., 1993; Kaskutas et al., 2003; Kelly et al., 2002; Tonigan and Toscova, 1996). This work has documented correlational evidence of a relationship between AA attendance and, more strongly, AA “involvement” (e.g., having a sponsor, being a sponsor, working the steps) and positive drinking-related outcomes. In addition, participation in self-help groups has been associated with lower subsequent health care costs (Humphreys and Moos, 1996, 2001).

Advance directives26,27 Psychiatric advance directives, like advance directives used in general health care, are intended to preserve consumers' ability to engage in self-direction during times when their decision-making capacity or ability to communicate their preferences might be impaired. Psychiatric instructional directives typically address such issues as preferred medications, treatments, service providers and locations, and who is to be notified about hospitalizations and allowed to visit. Psychiatric proxy directives (sometimes combined with instructional directives) allow people to designate someone to make treatment decisions on their behalf (Srebnik and La Fond, 1999). Allowing individuals to state their treatment preferences ahead of time increases the likelihood that care during times of psychiatric crisis and/or lack of decision-making competency will reflect their values and preferences. A number of approaches to preparing mental health advance directives have been developed, including completion of paper-and-pencil checklists, use of templates available on the Internet, and use of an interactive CD-ROM on a computer. Duke University's Program on Advance Psychiatric Directives provides tool kits and user-friendly instructions for consumers, clinicians, and family members to use in completing psychiatric advance directives (Cook, 2004).

Although there is much interest in advance directives for mental health care, few people with mental illnesses create such directives or find them honored in times of crisis. The reasons for failing to honor an advance directive include lack of provider awareness of the directive; concerns about an individual's competency at the time the directive was prepared; written directives that are unclear; poor communication with proxies about treatment preferences; limited availability of desired services in many communities; revocation issues, such as who can revoke a directive and under what circumstances; and legal and ethical issues involved in implementing directives that physicians disagree with or perceive as harmful to the individual (Cook, 2004). Moreover, although this option appears sensible and potentially applicable within the substance-use treatment field, there are as yet no published studies of its use in this field, and very few treatment programs have employed this approach with alcohol- or drug-dependent patients.

Several evaluation studies have found psychiatric advance directives to be feasible for use (with support) by individuals with severe and chronic mental illnesses (Peto et al., 2004; Sherman, 1998; Srebnik et al., 2004). Use of such directives is also perceived positively by consumers and associated with decreased feelings of coercion and increased perception of having a choice in their treatment decisions (Srebnik et al., 2004; Sutherby et al., 1999). Psychiatric advance directives, like advance directives for general medical conditions, can help ensure patient-centered care in times of diminished medical decision-making capacity (Backlar et al., 2001; Swanson et al., 2000).

Supporting Illness Self-Management Practices and Programs

The evidence reviewed earlier in this chapter shows the value of patients' self-management of their illnesses. However, it is important to underscore that successful self-management programs go far beyond traditional patient education programs by requiring teaching, supporting, and working closely with patients. Also, as cited earlier in this chapter, expert designers and researchers on these programs caution that many programs calling themselves self-management programs do not teach all the core skills involved and fail to address the necessary scope of issues (Lorig and Holman, 2003). Self-management support is defined as the “systematic provision of education and supportive interventions to increase patients' skills and confidence in managing their health problems, including regular assessment of progress and problems, goal setting, and problem-solving support” (IOM, 2003:52 [emphasis added]). Whereas traditional patient education offers technical information and skills training (typically in areas defined by the clinician), self-management education supports patients in identifying their problems and provides techniques to help them make decisions, take appropriate actions, and modify these plans as circumstances or the course of their illness changes. Patient self-management thus requires that a clinician utilize a collaborative model of practice in which the patient and clinician are equal partners, with equal expertise (Bodenheimer et al., 2002a). Whereas the clinician brings expertise in the illness and therapeutics, patients are experts in their own lives and in what concerns them and motivates and enables them to make changes in their lives. This model is the basis for a collaborative process between the health care provider and patient in which attainable, short-term goals are identified by the patient, discussed jointly, and agreed upon.

Several approaches have been developed in recent years to support individuals' self-management. One example, the Wellness Recovery Action Plan (WRAP), is a structured approach designed to help individuals with mental illnesses identify internal and external resources for facilitating recovery, and then use these tools to create a plan for successful living (Copeland, 2002). Creating a WRAP plan generally begins with development of a personal Wellness Toolbox, consisting of simple, safe, and (usually) free self-management strategies such as a healthy diet, exercise, good sleep patterns, and pursuit of adult life roles. The person then uses this toolbox to create an individualized plan for using each strategy to attain and/or maintain recovery. The plan also includes identification of early warning signs of symptom exacerbations or crisis, and ways in which the toolbox can help people manage and feel better. In addition, WRAP encourages development of a crisis plan, which states how the person would like to be treated in times of crisis (similar to an advance directive), as well as a postcrisis plan for getting back on the road to recovery.

Patient self-management of chronic illness also has become one of the pillars of the Chronic Care Model, reflecting recognition of the fact that for chronic illnesses, patients themselves are their principal caregivers— assuming such responsibilities as regulation of diet and exercise, self-measurement of laboratory values (e.g., blood glucose levels), and medication use. The Chronic Care Model helps patients and their families develop the skills and confidence to manage their chronic illness, providing self-management tools (e.g., symptom-monitoring flow charts, diets) and routinely assessing the patient's and family's problems and accomplishments in illness management (Bodenheimer et al., 2002b). Components of the Chronic Care Model have been applied successfully to the treatment of depression (Badamgarev et al., 2003; Gilbody et al., 2003; Pincus et al., 2003), and the model has been identified as having potential applicability to the care of persons with chronic substance-use illnesses as well (Watkins et al., 2003).

Eliminating Discriminatory Legal and Administrative Policies

In addition to the practices recommended above to be undertaken at the locus of care, public policy needs to be aligned to support patient-centered care. One very important policy change needed is ending insurance discrimination. Restrictions on access to student loans and the potential lifetime ban on receipt of food stamps or welfare (discussed earlier in this chapter) also need to be reexamined to determine whether their success in deterring drug use or achieving other purposes outweighs the obstacles they pose to the recovery of individuals with substance-use illnesses.

Attention needs to be paid as well to how coerced treatment is used for individuals with M/SU illnesses. Although the use of coercion is somewhat different for mental and substance-use illnesses, it is likely to continue for the foreseeable future for many individuals with substance-use illnesses, as well as for a minority of individuals with mental illnesses. For this reason, it is important that policies governing the use of coercion (1) reduce the risk of its use in situations in which it is not needed by making transparent the policies and practices used to assess decision-making capacity and dangerousness; (2) preserve as much patient decision making as possible whenever coercion is used, in part by providing comparative information on treatment and providers; and (3) minimize the risks associated with coerced treatment. Research also is needed to better understand the need for, appropriate use of, and outcomes of coercive practices for treatment of M/SU illnesses. Moreover, coercion can sometimes be avoided altogether. In a study of inpatient psychiatric admissions in two states, many individuals who experienced involuntary legal commitment reported that they were not offered the opportunity to enter the hospital voluntarily, and more than half indicated that they would have entered voluntarily had the offer been made (Hoge et al., 1997).

Transparent Policies and Practices for Assessing Decision-Making Capacity and Dangerousness

As previously discussed, the source of coercion into treatment for M/SU illnesses can be either informal (e.g., family and friends) or formal or governmental (e.g., mandatory outpatient treatment for individuals with mental illnesses because of a perceived danger to themselves or others, or criminal justice diversion programs such as drug courts for individuals with substance-use illnesses). Moreover, pressure for treatment can be expressed in both positive (persuasion or inducements) or negative (threats or force) forms. Evidence shows that threats and force lead to high levels of perceived coercion relative to persuasion and inducement. For this reason, positive pressure, such as persuasion, should be the strategy of choice to get people to accept treatment. Negative approaches should be used in emergencies or when all other options have failed (Dennis and Monahan, 1996).

With respect to involuntary commitment or treatment for mental illness or other governmentally imposed treatment for substance use, carefully crafted criteria for applying governmentally imposed coercion and due process protections would help minimize the risk that involuntary treatment mechanisms will be used to serve other than therapeutic ends (Hall and Appelbaum, 2002). However, application of even the best-crafted criteria is hampered by the lack of standardization in the approaches used by evaluators and the courts to determine both decision-making capacity and the risk of violence for individuals with mental illnesses. Variation is due both to infrequent (though growing) reliance on standardized assessment measures and to a lack of consensus on the relevant normative questions. These normative questions include (1) how much impairment of decision making is tolerable, or at what level of impaired decision making it is appropriate to override a patient's preference to avoid treatment; and (2) how much risk of violence should be tolerated before a person is confined for treatment or other coercive interventions are undertaken. These questions cannot be answered solely by empirical research because they involve identifying and reaching agreement on matters of values. As noted in the previous discussion of decision making, for example, decisions about a person's competency status inevitably involve the value judgments of the individual performing the evaluation (National Bioethics Advisory Commission, 1998; Roth et al., 1977). For this reason, some recommend that these judgments be made by a group of individuals from diverse backgrounds (Saks and Jeste, 2004).

Until more standardized instruments with better normative data and consensus on standards and processes for making such a determination are available, following the Quality Chasm's rule of transparency could help minimize the risk that coerced treatment will be used for other than therapeutic purposes or for protection of the public, as well as help establish a normative database to guide decision making in this area. The rule of transparency states:

The health care system should make information available to patients and their families that allows them to make informed decisions when selecting a health plan, hospital, or clinical practice, or choosing among alternative treatments. This should include information describing the system's performance on safety, evidence-based practice, and patient satisfaction. (IOM, 2001:8)

In M/SU health care, the health care “system” encompasses other societal systems that are not as strongly involved in the delivery of general health care—the criminal and juvenile justice, education, and child welfare systems. The health care delivered under the auspices of these systems and the policies that influence the delivery of that care also must be transparent to clients, their families, and the public at large so that individuals in need of care, their families, and society can make informed decisions about when and how coerced treatment is to be used. Policies and practices not only for initiating coercive treatment, but also for terminating it should be transparent, providing information on what one has to do to be discharged from involuntary inpatient or outpatient treatment or to have one's status changed to voluntary. Moreover, documenting the tools and approaches used in the judicial system to arrive at decisions to invoke mandatory outpatient treatment would be of help in developing the normative database needed to provide better guidance to individuals charged with making these decisions.

Preserving Patient-Centered Care and Patient Decision Making in Coerced Treatment

As previously discussed, the ways in which individuals perceive coercion vary and are influenced by the nature of the coercive process—the extent to which patients perceive those who are coercive as acting out of concern for them; treating them fairly, with respect, and without deception; giving them a chance to tell “their side of the story”; and considering what they have to say about treatment decisions (Dennis and Monahan, 1996). In all circumstances then, but especially when negative pressures are being used, patients need to be afforded “as much process as possible.” Further, individuals who are coerced into treatment should still be involved in decision making about the types of treatment to be used for their illness and in the choice of provider.

Minimizing Risks in Involuntary Treatment

As evidence in Chapter 4 shows, treatment itself is not without risks. These risks can result from errors in care as well as from the delivery of ineffective care. As discussed earlier, while unsafe and ineffective care permeates all of health care, individuals with M/SU illnesses may be especially at risk for errors and vulnerable to their effects. This is the case because the symptoms of some severe M/SU illnesses, such as major depression or schizophrenia, when not alleviated by therapy, may decrease patients' ability to be involved in the management of their care and therefore to detect and report errors in their care. Moreover, the stigma attached to individuals with M/SU illnesses may render them less likely to be believed when reporting information about errors and adverse events. These risks may be multiplied for an individual who has been committed involuntarily to inpatient or outpatient mental health treatment or coerced into treatment for substance use. When the patient's autonomy and treatment preferences are superseded, it is critically important that those responsible for making treatment decisions use comparative information on provider and treatment safety and effectiveness and continue to involve the patient in selecting and evaluating treatment alternatives.

Ensuring safe and effective care and preserving patient decision making can be accomplished by providing patients and their family members or other proxy decision makers with information about the illness to be treated; the range of available, evidence-based treatments for the illness and evidence on their relative effectiveness; and comparative information on the performance of individual providers and organizations in treating the illness (see Chapter 4).

Needed Research

More research is needed on how best to minimize the use of coercion and how to use it most effectively when it is unavoidable. In mental health care:

Little hard information exists on the pervasiveness of the various forms of mandated treatment for people with mental disorders, how leverage is imposed, or what the measurable outcomes of using leverage actually are. The many vexing legal and ethical questions surrounding mandated treatment have not been thoroughly aired…. If policy makers and practitioners in mental health care are to embrace—or repudiate—some or all forms of mandated community treatment, an evidence-based approach must soon replace polemics. (Monahan et al., 2003:37)

With respect to the use of coercion in treatment for substance use, research is needed to determine the effects, both positive and negative, of outpatient commitment, drug courts, the use of treatment conditions in probation and parole, and less formal mechanisms of pressure on persons with substance-use problems and illnesses. Empirical data will not resolve the debate about the legitimacy of these approaches, but to the extent that their consequences are known, such data can inform treatment interventions and policy making. Data can also help identify how involuntary interventions can be avoided.


The committee finds that actions in all of the areas addressed in this chapter can help to counteract the effects of stigma and discrimination on patient-centered care. To this end, the committee makes two recommendations.

Recommendation 3-1. To promote patient-centered care, all parties involved in health care for mental or substance-use conditions should support the decision-making abilities and preferences for treatment and recovery of persons with M/SU problems and illnesses.

  • Clinicians and organizations providing M/SU treatment services should:
    • - Incorporate informed, patient-centered decision making throughout their practices, including active patient participation in the design and revision of patient treatment and recovery plans, the use of psychiatric advance directives, and (for children) informed family decision making. To ensure informed decision making, information on the availability and effectiveness of M/SU treatment options should be provided.
    • - Adopt recovery-oriented and illness self-management practices that support patient preferences for treatment (including medications), peer support, and other elements of the wellness recovery plan.
    • - Maintain effective, formal linkages with community resources to support patient illness self-management and recovery.
  • Organizations providing M/SU treatment should also:
    • - Have in place policies that implement informed, patient-centered participation and decision making in treatment, illness self-management, and recovery plans.
    • - Involve patients and their families in the design, administration, and delivery of treatment and recovery services.
  • Accrediting bodies should adopt accreditation standards that require the implementation of these practices.
  • Health plans and direct payers of M/SU treatment services should:
    • - For persons with chronic mental illnesses or substance-use dependence, pay for peer support and illness self-management programs that meet evidence-based standards.
    • - Provide consumers with comparative information on the quality of care provided by practitioners and organizations, and use this information themselves when making their purchasing decisions.
    • - Remove barriers to and restrictions on effective and appropriate treatment that may be created by copayments, service exclusions, benefit limits, and other coverage policies.

The committee wishes to underscore that, with respect to the recommendation that health plans and direct payers of M/SU treatment services pay for peer support and illness self-management programs for individuals with chronic mental and substance-use illnesses, we are not calling for payment for all programs that involve peer support (including self- and mutual-help 12-step programs) or all programs that aim to teach illness self-management. Rather, the committee recommends funding of peer support and illness self-management programs that provide a standardized intervention encompassing all components found necessary through empirical testing and modeling, that have themselves been empirically tested, and that have been shown to improve health outcomes. The Georgia Peer Support program and the Stanford University School of Medicine's standardized approach for illness self-management are two examples of such programs.

Recommendation 3-2. Coercion should be avoided whenever possible. When coercion is legally authorized, patient-centered care is still applicable and should be undertaken by:

  • Making the policies and practices used for determining dangerousness and decision-making capacity transparent to patients and their caregivers.
  • Obtaining the best available comparative information on safety, effectiveness, and availability of care and providers, and using that information to guide treatment decisions.
  • Maximizing patient decision making and involvement in the selection of treatments and providers.

The committee notes that the above recommendations will be ineffective if the receipt of care by those who need it is not timely, if the care received is of poor quality, and if the necessary linkages with supportive human services are not in place. Improving the quality of M/SU therapies is addressed in the next chapter, while coordinating M/SU health care with other needed services is addressed in Chapter 5. Implementation of the above recommendations, as well as those made in succeeding chapters, is necessary to ensure the provision of patient-centered care.


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Some consumer information needs and choices pertain to the patient's role as a consumer in the health care marketplace, that is, as a purchaser of health insurance and chooser of both health plan and individual providers. Other information needs and choices relate to consumers' role within the patient–health care provider treatment relationship, one that involves selecting among different treatments and being active partners in the management of their illness and recovery. This chapter addresses the individual's role as patient within the treatment relationship; the patient's role as informed consumer and purchaser in the health care marketplace is discussed in Chapter 8.


Individuals with mental illnesses also historically have been stereotyped as possessing a number of other negative attributes, such as lack of interpersonal skills; the display of alienating behaviors; and among the seriously mentally ill, unattractive appearance (Farina, 1998; Martin et al., 2000).


Evidence suggests that actual experiences with social rejection are likely to be a more powerful influence than the expectation of rejection (Wright et al., 2000).


A recent analysis of self-management education programs (Warsi et al., 2004) found a small to moderate effect on outcomes for some clinical conditions (diabetes and hypertension) but no significant consistent benefit for asthma programs. This same analysis noted wide variation in the methodologies used and inconsistent reporting of measures of self-efficacy in these programs. Experts caution that many programs calling themselves self-management programs do not teach all the core skills involved and fail to address the necessary scope of issues (Lorig and Holman, 2003).


The term “serious emotional disturbance” is found in multiple federal statutes and regulations (e.g., the Individuals with Disabilities Education Act [IDEA], Public Law 101-476) and has thus pervaded the vocabulary of mental health care for children.


The Mental Health Parity Act, passed by Congress in 1996, prohibited annual or lifetime dollar limits on coverage in firms with 50 or more employees unless equal limits were placed on nonmental health care. However, the law did not prohibit other types of benefit coverage disparities, such as different copayment requirements and limits on outpatient visits or inpatient days. Also, although 34 states have enacted some form of parity legislation, these laws vary greatly in the population covered, types of limitations prohibited, and excluded diagnoses (Barry et al., 2003).


The Medicare program similarly requires a 50 percent copayment for visits to a psychiatrist, in contrast to a 20 percent copayment for visits for other illnesses.


Joan M. Pearson, Principal, Towers Perrin. Personal communication July 8, 2005.


20 USC Chapter 28, Higher Education Resources and Student Assistance, Subchapter IV, Part F, Section 1091(r). Regulations at 34 CFR Chapter VI, Subpart D, section 668.40.


21 US Code Chapter 13, Subchapter I, Part D, Section 862a. Accessed at http://uscode​ on February 2, 2005.


As of 1997, 21 states had done so by opting out entirely (10 states), allowing individuals convicted of felonies who are in substance abuse treatment programs to receive benefits (6 states), or implementing a shorter disqualification period or reduced benefits (4 states) (Gabor and Botsko, 1998).


Implementing regulations for the Food Stamp Program are at 7 CFR Chapter II Part 273 sections 273.11 (c) and (m).


Much of the evidence and discussion in this section is from three papers commissioned by the committee: “Impact of Mental Illness and Substance-Related Disorders on Decision-Making Capacity and Its Implications for Patient-Centered Mental Health Care Delivery” by Scott Kim, MD, PhD, Department of Psychiatry and the Program for Improving Health Care Decisions, University of Michigan Medical School; “Capacity to Consent to or Refuse Treatment and/or Research: Theoretical Considerations” by Elyn R. Saks, JD, Orrin B. Evans, Professor of Law, Psychology, and Psychiatry and the Behavioral Sciences, University of Southern California Law School, and Dilip V. Jeste, MD, Professor of Psychiatry and Neurosciences, University of California, San Diego; and “Decisional Capacity in Mental Illness and Substance Use Disorders: Empirical Database and Policy Implications,” also by Drs. Jeste and Saks.


Although this is the most widely cited model, it is not without its critics (Charland, 1998; Kapp and Mossman, 1996; Saks, 1999; Slobogin, 1996) since what is being attempted is measurement of a fairly abstract and (at least in part) socially constructed concept. Also, while this terminology is that used most frequently, there is some variability in the way these terms are interpreted (Saks and Jeste, 2004).


We focus here on studies of violence in the community because public fears of persons with mental illness typically are based on concerns about the likelihood of their perpetrating violence in the places where most people live and work. A separate literature, not reviewed here, addresses violent behavior by persons with mental illnesses in institutions, which can be a major problem for front-line staff and directly contributes to difficulties in recruitment and retention and to quality-of-care issues in these settings.


The study conducted a series of parallel surveys in New Haven, Baltimore, Saint Louis, Durham, and Los Angeles.


The contribution of any group to overall rates of violence is a function of three factors: the number of individuals in the group, the prevalence of violence within the group, and the size of the group relative to the total population (Swanson, 1994).


In this report, the term “coercion” is not used in its narrow legal sense, but refers to the full range of pressures applied to individuals to secure their participation in treatment, encompassing workplace mandates; criminal justice diversion programs (including drug and mental health courts); and other sources of leverage, such as social programs that require treatment adherence to receive housing, disability, or welfare benefits.


Individuals are also coerced into treatment for general medical conditions, such as tuberculosis, but this occurs less frequently.


Seclusion and restraint are more intense forms of coercion used in inpatient settings and are addressed in Chapter 4 in a discussion of threats to safe care.


There is less empirical evidence in support of protest as an effective mechanism for reducing stigma than is the case for the other three strategies (Corrigan and Penn, 1999; Corrigan et al., 2001).


Pat Taylor, Faces & Voices of Recovery, e-mail communication, October 11, 2004.


The discussion in this section incorporates content from the paper “Patient-Centered Care/Self-Directed Care: Legal, Policy and Programmatic Considerations,” prepared for the committee by Susan Stefan of the Center for Public Representation.


This may have been influenced in part by his stated belief that she could not be involuntarily committed under the state's laws (Jamison, 1995).


The report further notes that patient preferences are likely to change over time and as a consequence of the issues at hand.


Advance directives for mental health care are legally executed documents stating an individual's preferences regarding various aspects of psychiatric treatment in times of crisis, inpatient care, or otherwise impaired decision making.


Information in this section incorporates content from the commissioned paper “‘Patient-Centered' and ‘Consumer-Directed' Mental Health Services” by Judith A. Cook, PhD, Professor and Director, Center on Mental Health Services Research and Policy, University of Illinois at Chicago.

Copyright © 2006, National Academy of Sciences.
Bookshelf ID: NBK19831


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