Supporting 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.
RULES TO HELP ACHIEVE PATIENT-CENTERED CARE
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).
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
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 as the source of control. Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them. The health system should be able to accommodate differences in patient preferences and encourage shared decision making.
Shared knowledge and the free flow of information. Patients should have unfettered access to their own medical information and to clinical knowledge. Clinicians and patients should communicate effectively and share information.
The need for transparency. The health care system should make available to patients and their families information 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.
Anticipation of needs. The health system should anticipate patient needs, rather than simply reacting to events.
SOURCE: IOM, 2001:8.
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.
HOW STIGMA AND DISCRIMINATION IMPEDE PATIENT-CENTERED CARE
“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
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.
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.
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).
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 addi-
tional 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
21 US Code Chapter 13, Subchapter I, Part D, Section 862a. Accessed at http://uscode.house.gov 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).
in an individual with a drug dependence that induces cravings for the addictive substance (Hyman and Malenka, 2001).
EVIDENCE COUNTERS STEREOTYPES OF IMPAIRED DECISION MAKING AND DANGEROUSNESS
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
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 in-
creased 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 evalu-
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.
ation 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, 1999, 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.
ACTIONS TO SUPPORT PATIENT-CENTERED CARE
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 di-
rectives (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 tradi-
tional 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).
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.
AHRQ (Agency for Healthcare Research and Quality). 2005. Hospital Survey on Patient Safety Culture. [Online]. Available: http:www.ahrq.gov/qual/hospculture [accessed July 7, 2005]. Rockville, MD: AHRQ.
AMA (American Medical Association). 2001. International Classification of Diseases, 9th Revision Clinical Modification 2002, Volumes 1 and 2. Chicago, IL: AMA Press.
American Psychiatric Association. 1998. Guidelines for assessing the decision-making capacities of potential research subjects with cognitive impairment. American Journal of Psychiatry 155(11):1649–1650.
American Psychiatric Association. 2000. Diagnostic and Statistical Manual of Mental Disorders. Fourth Edition, Text Revision, DSM-IV-TR ed. Washington, DC: American Psychiatric Association.
Appelbaum PS. 1994. Almost a Revolution: Mental Health Law and the Limits of Change. New York: Oxford University Press.
Appelbaum P. 2001. Thinking carefully about outpatient commitment. Psychiatric Services 52(3):347–350.
Appelbaum PS, Grisso T. 1988. Assessing patients’ capacities to consent to treatment. New England Journal of Medicine (319):1635–1638.
Appelbaum PS, Grisso T. 1995. The MacArthur Treatment Competence Study. I: Mental illness and competence to consent to treatment. Law and Human Behavior 19(2):105–126.
Appelbaum PS, Roth LH, Lidz C. 1982. The therapeutic misconception: Informed consent in psychiatric research. International Journal of Law and Psychiatry 5(3–4):319–329.
Appelbaum BC, Appelbaum PS, Grisso T. 1998. Competence to consent to voluntary psychiatric hospitalization: A test of a standard by APA. Psychiatric Services 49(9):1193–1196.
Appelbaum PS, Grisso T, Frank E, O’Donnell S, Kupfer D. 1999. Competence of depressed patients for consent to research. American Journal of Psychiatry 156(9):1380–1384.
Arsenault L, Moffitt T, Caspi A, Taylor P, Silva P. 2000. Mental disorders and violence in a total birth cohort: Results form the Dunedin study. Archives of General Psychiatry 57(10):979–986.
Backlar P, McFarland BH, Swanson JW, Mahler J. 2001. Consumer, provider, and informal caregiver opinions on psychiatric advance directives. Administration and Policy in Mental Health 28(6):427–441.
Badamgarev E, Weingarten S, Henning J, Knight K, Hasselblad V, Gano A Jr, Ofman J. 2003. Effectiveness of disease management programs in depression: A systematic review. American Journal of Psychiatry 160(12):2080–2090.
Bagian JP, Gosbee JW. 2000. Developing a culture of patient safety at the VA. Ambulatory Outreach, Spring:25–29.
Bandura A. 1997a. Clinical functioning. In: Bandura A, ed. Self-Efficacy: The Exercise of Control. New York, NY: W.H. Freeman and Company. Pp. 319–368.
Bandura A. 1997b. Self-Efficacy: The Exercise of Control. New York: W.H. Freeman.
Barry CL, Gabel JR, Frank RG, Hawkins S, Whitmore HH, Pickreign JD. 2003. Design of mental health benefits: Still unequal after all these years. Health Affairs 22(5):127–137.
Bean G, Nishisato S, Rector NA, Glancy G. 1994. The psychometric properties of the Competency Interview Schedule. Canadian Journal of Psychiatry—Revue Canadienne De Psychiatrie 39(8):368–376.
Bechara A, Damasio H. 2002. Decision-making and addiction (Part I): Impaired activation of somatic states in substance dependent individuals when pondering decisions with negative future consequences. Neuropsychologia 40(10):1675–1689.
Bechara A, Dolan S, Hindes A. 2002. Decision-making and addiction (part II): Myopia for the future or hypersensitivity to reward? Neuropsychologia 40(10):1690–1705.
Belenko S. 1999. Research on drug courts: A critical review. National Drug Court Institute Review 2(2):1–58.
Belenko S. 2002. Drug courts. In: Leukefeld C, Tims F, Farabee D, eds. Treatment of Drug Offenders: Policies and Issues. New York: Springer. Pp. 301–318.
Bennett NS, Lidz CW, Monahan J, Mulvey EP, Hoge SK, Roth LH, Gardner W. 1993. Inclusion, motivation, and good faith: The morality of coercion in mental hospital admission. Behavioral Sciences and the Law 11(3):295–306.
Benson P, Roth LH, Appelbaum PS, Lidz C, Winslade W. 1988. Information disclosure, subject understanding, and informed consent in psychiatric research. Law and Human Behavior 12(4):455–475.
Berg JW. 1996. Legal and ethical complexities of consent with cognitively impaired research subjects: Proposed guidelines. Journal of Law, Medicine & Ethics 24(1):18–35.
Berg JW, Appelbaum PS, Grisso T. 1996. Constructing competence: Formulating standards of legal competence to make medical decisions. Rutgers Law Review 48:345–396.
Bergeson S. 2004. Testimony before the Institute of Medicine Committee on Crossing the Quality Chasm: Adaptation to Mental Health and Addictive Disorders. Washington, DC, July 14. Available from the Institute of Medicine.
Bodenheimer T, Lorig K, Holman H, Grumbach K. 2002a. Patient self-management of chronic disease in primary care. Journal of the American Medical Association 288(19):2469–2475.
Bodenheimer T, Wagner EH, Grumbach K. 2002b. Improving primary care for patients with chronic illness. Journal of the American Medical Association 288(14):1775–1779.
Brakel S. 1985. Voluntary admission. In: Brakel S, Parry J, Wesiner B, eds. The Mentally Disabled and the Law. 3rd ed. Chicago, IL: American Bar Foundation.
Brennan PA, Mednick. SA, Hodgins S. 2000. Major mental disorders and criminal violence in a Danish birth cohort. Archives of General Psychiatry 57(5):494–500.
Brock DW. 1991. Decision-making competence and risk. Bioethics 5(2):105–112.
Brody BA. 1998. The Ethics of Biomedical Research. New York: Oxford University Press.
Brown JD. 2003. Is involuntary outpatient commitment a remedy for community mental health service failure? Ethical Human Sciences and Services 5(1):7–20.
Bureau of Labor Statistics. 2003. National Compensation Survey: Employee Benefits in Private Industry in the United States, 2000. Bulletin 2555. Washington, DC: U.S. Department of Labor. [Online]. Available: http://stats.bls.gov/ncs/ebs/sp/ebbl0019.pdf [accessed February 25, 2004].
Cale GS. 1999. Risk-related standards of competence: Continuing the debate over risk-related standards of competence. Bioethics 13(2):131–148.
Capitani J, Hercik J, Kakuska C, Schwacter N, Welfare Peer Technical Assistance Network. 2001. Pathways to Self-Sufficiency: Findings of the National Needs Assessment. Pre-release draft. [Online]. Available: http://peerta.acf.hhs.gov/pdf/needsassessment.pdf [accessed May 26, 2005].
Carpenter WT Jr, Gold J, Lahti A, Queen C, Conley R, Bartko J, Kovnick J, Appelbaum PS. 2000. Decisional capacity for informed consent in schizophrenia research. Archives of General Psychiatry 57(6):533–538.
Charland L. 1998. Appreciation and emotion: Theoretical reflections on the MacArthur Treatment Competence Study. Kennedy Institute of Ethics Journal 8(4):359–376.
Cimons M. 2004. Challenging a Hidden Obstacle to Alcohol Treatment: Little Known Insurance Laws Thwart Screening in Emergency Rooms. Washington, DC: The George Washington University Medical Center.
Claxton G, Holve E, Finder B, Gabel J, Pickreign J, Whitmore H, Hawkins S, Dhont K. 2003. Employer Health Benefits: 2003 Annual Survey. Menlo Park, CA and Chicago, IL: Henry J. Kaiser Foundation and Health Research and Educational Trust.
Connoly T, Arkes HR, Hammond KR, eds. 2000. Judgment and Decision Making: An Interdisciplinary Reader. 2nd ed. Cambridge, MA: Cambridge University Press.
Cook JA. 2004. “Patient-Centered” and “Consumer-Directed” Mental Health Services. Paper commissioned by the Institute of Medicine Committee on Crossing the Quality Chasm: Adaptation to Mental Health and Addictive Disorders. Available from the Institute of Medicine.
Copeland ME. 2002. Wellness Recovery Action Plan. West Dummerston, VT: Peach Press.
Corrigan PW. 2004. Don’t call me nuts: An international perspective on the stigma of mental illness. Acta Psychiatrica Scandinavica 109(6):403–404.
Corrigan PW, Penn DL. 1999. Lessons from social psychology on discrediting psychiatric stigma. American Psychologist 54(9):765–776.
Corrigan PW, Watson AC. 2003. Factors that explain how policy makers distribute resources to mental health services. Psychiatric Services 54(4):501–507.
Corrigan PW, River LP, Lundin RK, Penn DL, Uphoff-Wasowski K, Campion J, Mathisen J, Gagnon C, Bargman M, Goldstein H, Kubiak MA. 2001. Three strategies for changing attributions about severe mental illness. Schizophrenia Bulletin 27(2):187–195.
Corrigan PW, Rowan D, Green A, Lunding R, River P, Uphoff-Wasowski K, White K, Kubiak MA. 2002. Challenging two mental illness stigmas: Personal responsibility and dangerousness. Schizophrenia Bulletin 28(2):293–309.
Cournos F, Faulkner LR, Fitzgerald L, Griffith E, Munetz MR, Winick B. 1993. Report of the Task Force on Consent to Voluntary Hospitalization. Bulletin of the American Academy of Psychiatry and the Law 21(3):293–307.
Cronkite RC, Moos RH, Twohey J, Cohen C, Swindle R Jr. 1998. Life circumstances and personal resources as predictors of the ten-year course of depression. American Journal of Community Psychology 26(2):255–279.
Culver CM, Gert B. 1990. The inadequacy of incompetence. Milbank Quarterly 68(4): 619–643.
Davenport T, DeLong D, Beers M. 1998. Successful knowledge management projects. Sloan Management Review 39(2):43–57.
Davis TC, Holcombe RF, Berkel HJ, Pramanik S, Divers SG. 1998. Informed consent for clinical trials: A comparative study of standard versus simplified forms. Journal of the National Cancer Institute 90(9):668–674.
Dennis DL, Monahan J, eds. 1996. Coercion and Aggressive Community Treatment: A New Frontier in Mental Health Law. New York: Plenum Press.
D’Onofrio G, Degutis LC. 2002. Preventive care in the emergency department: Screening and brief intervention for alcohol problems in the emergency department—A systematic review. Academic Emergency Medicine 9(6):627–637.
Dunn L, Lindamer L, Palmer BW, Golshan S, Schneider L, Jeste DV. 2002. Improving understanding of research consent in middle-aged and elderly patients with psychotic disorders. American Journal of Geriatric Psychiatry 10(2):142–150.
Dymek MP, Atchinson P, Harrell L, Marson DC. 2001. Competency to consent to medical treatment in cognitively impaired patients with Parkinson’s disease. Neurology 56(1):17–24.
Emrick CD, Tonigan JS, Montgomery H, Little L. Alcoholics Anonymous: What is currently known? 1993. In: McCrady BS, Miller WR, eds. Research on Alcoholics Anonymous: Opportunities and Alternatives. New Brunswick, NJ: Rutgers Center of Alcohol Studies. Pp. 41–78.
Faden R, Beauchamp T. 1986. A History and Theory of Informed Consent. New York: Oxford University Press.
Farabee D, Prendergast ML, Anglin MD. 1998. The effectiveness of coerced treatment for drug-abusing offenders. Federal Probation 62(1):3–10.
Farina A. 1998. Stigma. In: Mueser KT, Tarrier N, eds. Handbook of Social Functioning in Schizophrenia. Needham Heights, MA: Allyn & Bacon. Pp. 247–279.
Gabor V, Botsko C. 1998. State Food Stamp Policy Choices under Welfare Reform: Findings of 1997 50-State Survey. [Online]. Available: http:www.fns.usda.gov/oane/MENU/Published/FSP/FILES/ProgramDesign/finsum.pdf [accessed January 12, 2005].
GAO (U.S. Government Accountability Office). 2000. Mental Health Parity Act: Despite New Federal Standards, Mental Health Benefits Remain Limited. GAO/HEHS-00-95. Washington, DC: GAO.
GAO. 2003. Child Welfare and Juvenile Justice: Federal Agencies Could Play a Stronger Role in Helping States Reduce the Number of Children Placed Solely to Obtain Mental Health Services. GAO-03-397. Washington, DC: GAO. [Online]. Available: http://www.gao.gov/new.items/d03397.pdf [accessed October 25, 2004].
Garnham A, Oakhill J. 1994. Thinking and Reasoning. Cambridge, MA: Blackwell.
Gentilello LM, Ebel BE, Wickizer TM, Salkever DS, Rivara FP. 2005. Alcohol interventions for trauma patients treated in emergency departments and hospitals: A cost benefit analysis. Annals of Surgery 241(4):541–550
Gilbody S, Whitty P, Grimshaw J, Thomas R. 2003. Educational and organizational interventions to improve the management of depression in primary care: A systematic review. Journal of the American Medical Association 289(23):3145–3151.
Giliberti M, Schulzinger R. 2000. Relinquishing Custody: The Tragic Result of Failure to Meet Children’s Mental Health Needs. Washington, DC: Bazelon Center for Mental Health Law.
Goldman-Rakic P. 1994. Working memory dysfunction in schizophrenia. Journal of Neuropsychiatry and Clinical Neurosciences 6(4):348–357.
Gorelick D, Pickens R, Bonkovsky F. 1999. Clinical research in substance abuse: Human subjects issues. In: Pincus H, Lieberman J, Ferris S, eds. Ethics in Psychiatric Research: A Resource Manual for Human Subjects Protection. Washington, DC: American Psychiatric Association. Pp. 177–218.
Grant S, Contoreggi C, London E. 2000. Drug abusers show impaired performance in a laboratory test of decision making. Neuropsychologia 38(8):1180–1187.
Grisso T, Appelbaum PS. 1995. The MacArthur treatment competence study. III: Abilities of patients to consent to psychiatric and medical treatments. Law and Human Behavior 19(2):149–174.
Grisso T, Appelbaum PS. 1998. Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals. New York: Oxford University Press.
Grisso T, Appelbaum PS, Mulvey EP, Fletcher K. 1995. The MacArthur Treatment Competence Study. II: Measures of abilities related to competence to consent to treatment. Law and Human Behavior 19(2):127–148.
Grisso T, Appelbaum PS, Hill-Fotouhi C. 1997. The MacCAT-T: A clinical tool to assess patients’ capacities to make treatment decisions. Psychiatric Services 48(11):1415–1419.
Grossman L, Summers F. 1980. A study of the capacity of schizophrenia patients to give informed consent. Hospital and Community Psychiatry 31(3):205–206.
Hall KT, Appelbaum PS. 2002. The origins of commitment for substance abuse in the United States. Journal of the American Academy of Psychiatry and the Law. 30(1):33–45; discussion 46-48.
Hall LL, Graf AC, Fitzpatrick MJ, Lane T, Birkel RC. 2003. Shattered Lives: Results of a National Survey of NAMI Members Living with Mental Illnesses and Their Families. Arlington, VA: National Alliance for the Mentally Ill.
Hazelton LD, Sterns GL, Chisolm T. 2003. Decision-making capacity and alcohol abuse: Clinical and ethical considerations in personal care choices. General Hospital Psychiatry 25(2):130–135.
Health Policy Tracking Service. 2004. Parity and Other Insurance Mandates for the Treatment of Mental Illness and Substance Abuse. Issue Brief, December 31.
Heifetz R, Laurie D. 2001. The work of leadership. Harvard Business Review 79(11):131–140.
Hibbard JH. 2003. Engaging health care consumers to improve the quality of care. Medical Care 41(Supplement 1):I-61–I-70.
Hodgins S, Janson CG. 2002. Criminality and Violence among the Mentally Disordered: The Stockholm Metropolitan Project. Cambridge, UK: Cambridge University Press.
Hoge MA, Jacobs S, Belitsky R, Migdole S. 2002. Graduate education and training for contemporary behavioral health practice. Administration and Policy in Mental Health 29(4/5):335–357.
Hoge SK, Lidz CW, Eisenberg M, Gardner W, Monahan J, Mulvey E, Roth L, Bennett N. 1997. Perceptions of coercion in the admission of voluntary and involuntary psychiatric patients. International Journal of Law and Psychiatry 20(2):167–181.
Humphreys K, Moos R. 1996. Reduced substance abuse-related health care costs among voluntary participants in Alcoholics Anonymous. Psychiatric Services 47(7):709–713.
Humphreys K, Moos RH. 2001. Can encouraging substance abuse inpatients to participate in self-help groups reduce the demand for out-patient care? A quasi-experimental study. Alcoholism: Clinical and Experimental Research 25(5):711–716.
Humphreys K, Wing S, McCarty D, Chappel J, Gallant L, Haberle B, Horvath AT, Kaskutas LA, Kirk T, Kivlahan D, Laudet A, McCrady BS, McLellan AT, Morgenstern J, Townsend M, Weiss R. 2004. Self-help organizations for alcohol and drug problems: Towards evidence-based practice and policy. Journal of Substance Abuse Treatment 26(3):151–158.
Hyman SE, Malenka RC. 2001. Addiction and the brain: The neurobiology of compulsion and its persistence. Nature Reviews Neuroscience 2(10):695–703.
IOM (Institute of Medicine). 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press.
IOM. 2003. In: Adams K, Corrigan JM, eds. Priority Areas for National Attention: Transforming Health Care Quality. Washington, DC: The National Academies Press.
IOM. 2004a. Health Literacy: A Prescription to End Confusion. Washington, DC: The National Academies Press.
IOM. 2004b. In: Page A, ed. Keeping Patients Safe: Transforming the Work Environment of Nurses. Washington, DC: The National Academies Press.
Irwin M, Lovitz A, Marder SR, Mintz J, Winslade W, Van Putten T, Mills M. 1985. Psychotic patients understanding of informed consent. American Journal of Psychiatry 142(11):1351–1354.
Jamison KR. 1995. An Unquiet Mind. New York, NY: Alfred A. Knopf, Inc.
Jenkins CL. 2004, November 29. Mental illness sends many to foster care. The Washington Post. Metro Section. Pp. B1 and B4, Column 1.
Join Together. 2003. Ending Discrimination against People with Alcohol and Drug Problems: Recommendations from a National Policy Panel. Boston, MA: Join Together, Boston University School of Public Health. [Online]. Available: http://www.jointogether.org/sa/files/pdf/discrimination.pdf [accessed October 3, 2004].
Judge David L. Bazelon Center for Mental Health Law. 2000a. Involuntary Outpatient Commitment: Summary of State Statutes. Washington DC: Judge David L. Bazelon Center for Mental Health Law. [Online]. Available: http://www.bazelon.org/issues/commitment/ioc/iocchart.pdf [accessed January 25, 2005].
Judge David L. Bazelon Center for Mental Health Law. 2000b. Position Statement on Involuntary Commitment. Washington DC: Judge David L. Bazelon Center for Mental Health Law. [Online]. Available: http://www.bazelon.org/issues/commitment/bazelonposition.htm on [accessed January 25, 2005].
Kahneman D, Slovic P, Tversky A, eds. 1982. Judgment under Uncertainty: Heuristics and Biases. Cambridge, UK: Cambridge University Press.
Kapp MB, Mossman D. 1996. Measuring decisional capacity: Cautions on the construction of a “capacimeter.” Psychology, Public Policy, and Law 2(1):73–95.
Kaskutas LA, Ammon L. 2003–2004. A naturalistic comparison of outcomes at social and clinical model substance abuse treatment programs. International Journal of Self-Help and Self-Care 2(2):111–133.
Kaskutas LA, Turk N, Bond J, Weisner C. 2003. The role of religion, spirituality and Alcoholics Anonymous in sustained sobriety. Alcoholism Treatment Quarterly 21(1):1–16.
Kelly JF, Myers MG, Brown SA. 2002. Do adolescents affiliate with 12-step groups? A multivariate process model of effects. Journal of Studies on Alcohol 63(3):293–304.
Keyserlingk EW. 1995. Proposed guidelines for the participation of persons with dementia as research subjects. Perspectives in Biology and Medicine 38(2):319–362.
Kim SYH, Caine ED, Currier GW, Leibovici A, Ryan JM. 2001. Assessing the competence of persons with Alzheimer’s disease in providing informed consent for participation in research. American Journal of Psychiatry 158(5):712–717.
Kolodziej ME, Johnson BT. 1996. Interpersonal contact and acceptance of persons with psychiatric disorders: A research synthesis. Journal of Consulting and Clinical Psychology 64(6):1387–1396.
Lapid M, Rummans T, Poole K, Pankratz S, Maurer M, Rasmussen K, Philbrick K, Appelbaum P. 2003. Decisional capacity of severely depressed patients requiring electroconvulsive therapy. Journal of ECT 19(2):67–72.
Lawental E, McLellan AT, Grissom GR, Brill P, O’Brien C. 1996. Coerced treatment for substance abuse problems detected through workplace urine surveillance: Is it effective? Journal of Substance Abuse 8(1):115–128.
Leibfried T. 2004. Testimony before the Institute of Medicine Committee on Crossing the Quality Chasm: Adaptation to Mental Health and Addictive Disorders. Washington, DC, July 14. Available from the Institute of Medicine.
Lindman F, McIntyre D. 1961. The Mentally Disabled and the Law. Chicago, IL: University of Chicago Press.
Link BG, Phelan JC. 2001. Conceptualizing stigma. Annual Review of Sociology 27(1): 363–385.
Link B, Andrews A, Cullen F. 1992. The violent and illegal behavior of mental patients reconsidered. American Sociological Review 57(3):275–292.
Link BG, Phelan JC, Bresnahan M, Stueve A, Pescosolido BA. 1999. Public conceptions of mental illness: Labels, causes, dangerousness, and social distance. American Journal of Public Health 89(9):1328–1333.
Link B, Struening E, Neese-Todd S, Asmussen S, Phelan JC. 2001. Stigma as a barrier to recovery: The consequences of stigma for the self-esteem of people with mental illnesses. Psychiatric Services 52(12):1621–1626.
Longshore D, Urada D, Evans E, Hser YH, Prendergast M, Hawken A. 2005. Evaluation of the Substance Abuse and Crime Prevention Act: 2004 Report. Los Angeles, CA: UCLA Integrated Substance Abuse Programs. [Online]. Available: http://www.uclaisap.org/Prop36/documents/sacpa080405.pdf [accessed October 10, 2005].
Lorig KR, Holman HR. 2003. Self-management education: History, definition, outcomes, and mechanisms. Annals of Behavioral Medicine 26(1):1–7.
Lorig KR, Ritter P, Stewart AA, Sobel D, Brown BW, Bandura A, Gonzalez VM, Laurent DD, Holman HR. 2001. Chronic disease self-management program: 2-year health status and health care utilization outcomes. Medical Care 39(11):1217–1223.
Luchins D, Roberts D, Hanrahan P. 2003. Representative payeeship and mental illness: A review. Administration and Policy in Mental Health 30(4):341–353.
Mann CE, Himelein MJ. 2004. Factors associated with stigmatization of persons with mental illness. Psychiatric Services 55(2):185–187.
Markowitz FE. 1998. The effects of stigma on the psychological well-being and life satisfaction of persons with mental illness. Journal of Health and Social Behavior 39(4):335–347.
Marlowe DB. 2003. Integrating substance abuse treatment and criminal justice supervision. NIDA Science & Practice Perspectives 2(1):4–14.
Marlowe DB, Festinger DS, Lee PA. 2004. The judge is a key component of drug court. Drug Court Review IV(2):1–34.
Marson D, Harrell L. 1999. Executive dysfunction and loss of capacity to consent to medical treatment in patients with Alzheimer’s disease. Seminars in Clinical Neuropsychiatry 4:41–49.
Marson DC, Chatterjee A, Ingram KK, Harrell LE. 1996. Toward a neurological model of competency: Cognitive predictors of capacity to consent in Alzheimer’s disease using three different legal standards. Neurology 46(3):666–672.
Marson DC, Hawkins L, McInturff B, Harrell LE. 1997. Cognitive models that predict physician judgements of capacity to consent in mild Alzheimer’s disease. Journal of the American Geriatrics Society 45(4):458–464.
Martin JK, Pescosolido BA, Tuch SA. 2000. Of fear and loathing: The role of “disturbing behavior,” labels, and causal attributions in shaping public attitudes toward people with mental illness. Journal of Health and Social Behavior 41(2):208–223.
Masand PS, Bouckoms AJ, Fischel SV, Calabrese LV, Stern TA. 1998. A prospective multi-center study of competency evaluations by psychiatric consultation services. Psychosomatics 39(1):55–60.
McElrath, D. 1997. The Minnesota model. Journal of Psychoactive Drugs 29(2):141–144.
McGlynn EA, Asch SM, Adams J, Keesey J, Hicks J, DeCristofaro A, Kerr EA. 2003. The quality of health care delivered to adults in the United States. New England Journal of Medicine 348(26):2635–2645.
Meisel A. 1998. Legal aspects of end-of-life decision making. In: Steinberg M, Youngner S, eds. End of Life Decisions: A Psychosocial Perspective. Washington, DC: American Psychiatric Press, Inc. Pp. 235–258.
Michigan Department of Community Health. 2003. Self-Determination Policy and Practice Guideline. [Online]. Available: http://www.michigan.gov/documents/SelfDeterminationPolicy_70262_7.pdf [accessed May 26, 2005].
Monahan J. 1981. The Clinical Prediction of Violent Behavior. National Institute of Mental Health. Washington, DC: U.S Government Printing Office. Reprinted as Predicting Violent Behavior: An Assessment of Clinical Techniques (Sage Publications, 1981).
Monahan J, Steadman H, Silver E, Appelbaum PS, Robbins PC, Mulvey EP, Roth LH, Grisso T, Banks S. 2001a. Rethinking Risk Assessment: The MacArthur Study of Mental Disorder and Violence. New York: Oxford University Press.
Monahan J, Bonnie RJ, Appelbaum PS, Hyde P, Steadman H, Swartz M. 2001b. Mandated community treatment: Beyond outpatient commitment. Psychiatric Services 52(9):1198–1205.
Monahan J, Swartz M, Bonnie RJ. 2003. Mandated treatment in the community for people with mental disorders. Health Affairs 22(5):28–38.
Monahan J, Redlich AD, Swanson J, Robbins PC, Appelbaum PS, Petrilla J, Steadman HJ, Swartz M, Angell B, McNiel DE. 2005. Use of leverage to improve adherence to psychiatric treatment in the community. Psychiatric Services 56(1):37–44.
Moser DJ, Schultz SK, Arndt S, Benjamin ML, Fleming FW, Brems CS, Paulsen JS, Appelbaum PS, Andreasen NC. 2002. Capacity to provide informed consent for participation in schizophrenia and HIV research. American Journal of Psychiatry 159(7):1201–1207.
Mowbray CT, Moxley DP, Jasper CA, Howell LL, eds. 1997. Consumers as Providers in Psychiatric Rehabilitation. Columbia, MD: International Association of Psychosocial Rehabilitation Services.
Moyer A, Finney J, Swearingen C, Vergun P. 2002. Brief interventions for alcohol problems: A meta-analytic review of controlled investigations in treatment-seeking and nontreatment-seeking populations. Addiction 97(3):279–292.
Mueser KT, Corrigan PW, Hilton DW, Tanzman B, Schaub A, Gingerich S, Essock SM, Tarrier N, Morey B, Vogel-Scibilia S, Herz MI. 2002. Illness management and recovery: A review of the research. Psychiatric Services 53(10):1272–1284.
Munetz M, Roth LH. 1985. Informing patients about tardive dyskinesia. Archives of General Psychiatry 42(9):866–871.
Murdach AD. 1996. Beneficence re-examined: Protective intervention in mental health. Social Work 41(1):26–32.
National Bioethics Advisory Commission. 1998. Research Involving Persons with Mental Disorders That May Affect Decision-making Capacity. Volume 1. Rockville, MD: National Bioethics Advisory Commission.
New York State Department of Health Advisory Work Group on Human Subject Research Involving the Protected Classes. 1999. Recommendations on the Oversight of Human Subject Research Involving the Protected Classes. [Online]. Available: http://nysl.nysed.gov/Archimages/14195.PDF [accessed October 7, 2005].
NIMH (National Institute of Mental Health). 2005. NIMH Outreach Partnership Program. [Online]. Available: http://www.nimh.nih.gov/outreach/partners/index.cfm [accessed July 30, 2005].
Office of the Maryland Attorney General. 1998. Final Report of the Attorney General’s Research Working Group. Baltimore, MD: Office of the Maryland Attorney General.
Pajares F. 2002. Overview of Social Cognitive Theory and of Self-Efficacy. Emory University. [Online]. Available: http://www.emory.edu/EDUCATION/mfp/eff.html [accessed October 8, 2004].
Palmer BW, Dunn LB, Appelbaum PS, Jeste DV. 2004. Correlates of treatment-related decision-making capacity among middle-aged and older patients with schizophrenia. Archives of General Psychiatry 61(3):230–236.
Peck MC, Scheffler RM. 2002. An analysis of the definitions of mental illness used in state parity laws. Psychiatric Services 53(9):1089–1095.
Peele PB, Lave JR, Xu Y. 1999. Benefit limits in managed behavioral health care: Do they matter? The Journal of Behavioral Health Services & Research 26(4):430–441.
Peele PB, Lave JR, Kelleher KJ. 2002. Exclusions and limitations in children’s behavioral health care coverage. Psychiatric Services 53(5):591–594.
Perlick DA, Rosenheck RA, Clarkin JF, Sirey JA, Salahi J, Struening LE, Link BG. 2001. Adverse effects of perceived stigma on social adaptation of persons diagnosed with bipolar affective disorder. Psychiatric Services 52(12):1627–1632.
Pescosolido BA, Martin JK, Link BG, Kikuzawa S, Burgos G, Swindle R, Phelan J. Undated. Americans’ Views of Mental Health and Illness at Century’s End: Continuity and Change. Public Report on the MacArthur Mental Health Module, 1996 General Social Survey. Bloomington, IN: The Indiana Consortium of Mental Health Services Research, Indiana University and The Joseph P. Mailman School of Public Health, Columbia University. [Online]. Available: http://www.indiana.edu/~icmhsr/amerview1.pdf [accessed August 18, 2004].
Pescosolido BA, Monahan J, Link BG, Stueve A, Kikuzawa S. 1999. The public’s view of the competence, dangerousness, and need for legal coercion of persons with mental health problems. American Journal of Public Health 89(9):1339–1345.
Peto T, Srebnik D, Zick E, Russo J. 2004. Support needed to create psychiatric advance directives. Administration and Policy in Mental Health 31(5):409–419.
Pincus HA, Hough L, Houtsinger JK, Rollman BL, Frank R. 2003. Emerging models of depression care: Multi-level (“6P”) strategies. International Journal of Methods in Psychiatric Research 12(1):54–63.
Polcin D, Weisner C. 1999. Factors associated with coercion in entering treatment for alcohol problems. Drug and Alcohol Dependence 54(1):63–68.
Project MATCH Research Group. 1998. Matching alcoholism treatments to client heterogeneity: Project MATCH three-year drinking outcomes. Alcoholism: Clinical and Experimental Research 22(6):1300–1311.
Rasinski KA. 2003. Stigma Associated With Drug Addiction: Report of a Language Audit Based on the Results of a National Survey of Drug Policy. Chicago, IL: University of Chicago, National Opinion Research Center.
Redlich AD, Steadman HJ, Monahan J, Petrila J, Griffin P. 2005. The second generation of mental health courts. Psychology, Public Policy, and Law 11(4):527–538.
Rivara FP, Tollefson S, Tesh E, Gentilello L. 2000. Screening trauma patients for alcohol problems: Are insurance companies barriers? Journal of Trauma: Injury, Infection, and Critical Care 48(1):115–118.
Roman PM, Blum TC. 2002. The workplace and alcohol problem prevention. Alcohol Research and Health 26(1):49–57.
Rosen M, Rosenheck R. 1999. Substance use and assignment of representative payees. Psychiatric Services 50(1):95–98.
Roth LH, Meisel A, Lidz CW. 1977. Tests of competency to consent to treatment. American Journal of Psychiatry (134):279–284.
Roth LH, Lidz CW, Meisel A, Soloff PH, Kaufman K, Spiker DG, Foster FG. 1982. Competency to decide about treatment or research: An overview of some empirical data. International Journal of Law and Psychiatry 5(1):29–50.
Ryan R, Deci E. 2000. Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. American Psychologist 55(1):68–78.
Sabin JE, Daniels N. 1999. Public-sector managed behavioral health care: III. Meaningful consumer and family participation. Psychiatric Services 50(7):883–885.
Sabin JF, Daniels N. 2001. Managed care: Strengthening the consumer voice in managed care: I. Can the private sector meet the public sector standard? Psychiatric Services 52(4): 461–464.
Sabin JE, Daniels N. 2003. Strengthening the consumers voice in managed care: VII. The Georgia Peer Specialist Program. Psychiatric Services 54(4):497–498.
Sabin JE, O’Brien MF, Daniels N. 2001. Managed care: Strengthening the consumer voice in managed care: II. Moving NCQA standards from rights to empowerment. Psychiatric Services 52(10):1303–1305.
Saks ER. 1999. Competency to decide on treatment and research: The MacArthur capacity instruments. In: National Bioethics Advisory Commission, ed. Research Involving Persons with Mental Disorders That May Affect Decision-Making Capacity: Volume II, Commissioned Papers. Rockville, MD: National Bioethics Advisory Commission. Pp 59–78.
Saks ER, Jeste DV. 2004. Capacity to Consent to or Refuse Treatment and/or Research: Theoretical Considerations. Paper commissioned by the Institute of Medicine Committee on Crossing the Quality Chasm: Adaptation to Mental Health and Addictive Disorders. Available from Institute of Medicine.
Saks ER, Dunn LB, Maershall BJ, Nayak GV, Golsan S, Jeste DV. 2002. The California Scale of Appreciation: A new instrument to measure the appreciation component of capacity to consent to research. American Journal of Geriatric Psychiatry 10(2): 166–174.
Samet JH, Rollnick S, Barnes H. 1996. Beyond CAGE: A brief clinical approach after detection of substance abuse. Archives of Internal Medicine 156(20):2287–2293.
SAMHSA (Substance Abuse and Mental Health Services Administration). 2000. Changing the Conversation: Improving Substance Abuse Treatment: The National Treatment Plan Initiative. DHHS Publication No. (SMA) 00-3479. Rockville, MD: U.S. Department of Health and Human Services.
SAMHSA. 2004a. Recovery Community Services Program. [Online]. Available: http://rcsp.samhsa.gov/about/history.htm [accessed May 26, 2005].
SAMHSA. 2004b. Results From the 2003 National Survey on Drug Use and Health: National Findings. DHHS Publication Number SMA 04-3964. NSDUH Series H-25. Rockville, MD: U.S. Department of Health and Human Services.
Schacter D, Kleinman I, Prendergast P, Remington G, Schertzer S. 1994. The effect of psychopathology on the ability of schizophrenic patients to give informed consent. Journal of Nervous and Mental Disorders 182(6):360–362.
Schein EH. 1992. Organizational Culture and Leadership. 2nd ed. San Francisco, CA: Jossey-Bass.
Shaw J, Amos T, Hunt IM, Flynn S, Turnbull P, Kapur N, Appleby L. 2004. Mental illness in people who kill strangers: Longitudinal study and national clinical survey. British Medical Journal 328(7442):734–737.
Sherbourne C, Hays RD, Wells KB. 1995. Personal and psychological risk factors for physical and mental health outcomes and course of depression and depressed patients. Journal of Consulting and Clinical Psychology 63(3):345–355.
Sherbourne CD, Sturm R, Wells KB. 1999. What outcomes matter to patients? Journal of General Internal Medicine 14(6):357–363.
Sherman P. 1998. Computer-assisted creation of psychiatric advance directives. Community Mental Health Journal 34(4):351–362.
Shoor S, Lorig K. 2002. Self-care and the doctor-patient relationship. Medical Care 40(4):II-40–II-44.
Simpson A, McKenna B, Moskowitz A, Skipworth J, Barry-Walsh J. 2003. Myth and Reality: The Relationship between Mental Illness and Homicide in New Zealand. Auckland, NZ: Health Research Council of New Zealand.
Sirey JA, Bruce ML, Alexopoulos GS, Perlick DA, Friedman SJ, Meyers BS. 2001. Perceived stigma and patient-rated severity of illness as predictors of antidepressant drug adherence. Psychiatric Services 52(12):1615–1620.
Skeem JL, Encandela J, Louden JE. 2003. Perspectives on probation and mandated mental health treatment in specialized and traditional probation departments. Behavioral Sciences and the Law 21(4):429–458.
Slobogin C. 1996. “Appreciation” as a measure of competence: Some thoughts about the MacArthur Group’s approach. Psychology, Public Policy, and Law 2:18–30.
Smith M. 2002. Stigma. Advances in Psychiatric Treatment 8(5):317–323.
Solomon P, Draine J. 2001. The state of knowledge of the effectiveness of consumer provided services. Psychiatric Rehabilitation Journal 25(1):20–27.
Srebnik DS, La Fond JQ. 1999. Advance directives for mental health treatment. Psychiatric Services 50(7):919–925.
Srebnik D, Appelbaum PS, Russo J. 2004. Assessing competence to complete psychiatric advance directives with the competence assessment tool for psychiatric advance directives. Comprehensive Psychiatry 45(4):239–245.
Stanford University School of Medicine. 2005. Chronic Disease Self-Management Program. [Online]. Available: http://patienteducation.stanford.edu/programs/cdsmp.html [accessed January 27, 2005].
Stanton M. 2002. Expanding Patient-Centered Care to Empower Patients and Assist Providers. AHRQ Publication Number: 02-0024. Rockville, MD: AHRQ and DHHS. [Online]. Available: http://www.ahrq.gov/qual/ptcareria.pdf [accessed February 8, 2005].
Steadman HJ, Mulvey EP, Monahan J, Robbins PC, Appelbaum PS, Grisso T, Roth LH, Silver E. 1998. Violence by people discharged from acute psychiatric inpatient facilities and by others in the same neighborhoods. Archives of General Psychiatry 55(5):393–401.
Steadman H, Davidson S, Brown C. 2001. Mental health courts: Their promise and unanswered questions. Psychiatric Services 52(4):457–458.
Stefan S. 2004. Patient Centered Care/Self Directed Care: Legal, Policy and Programmatic Considerations. Paper commissioned by the Institute of Medicine Committee on Crossing the Quality Chasm: Adaptation to Mental Health and Addictive Disorders.
Stiles PG, Poythress NG, Hall A, Falkenbach D, Williams R. 2001. Improving understanding of research consent disclosures among persons with mental illness. Psychiatric Services 52(6):780–785.
Stuart G, Tondora J, Hoge M. 2004. Evidence-based teaching practice: Implications for behavioral health. Administration and Policy in Mental Health 32(2):107–130.
Sutherby K, Szmukler GI, Halpern A, Alexander M, Thornicroft G, Johnson C, Wright S. 1999. A study of “crisis cards” in a community psychiatric service. Acta Psychiatrica Scandinavica 100(1):56–61.
Swanson J. 1994. Mental disorder, substance abuse, and community violence: An epidemiologic approach. In: Monahan J, Steadman HJ, eds. Violence and Mental Disorder. Chicago, IL: University of Chicago Press. Pp. 101–136.
Swanson JW, Tepper MC, Backlar P, Swartz MS. 2000. Psychiatric advance directives: An alternative to coercive treatment? Psychiatry 63(2):160–172.
Swartz M, Monahan J. 2001. Special section on involuntary outpatient commitment: Introduction. Psychiatric Services 52(3):323–324.
Taylor PJ, Gunn J. 1999. Homicides by people with mental illness: Myth and reality. British Journal of Psychiatry 174(1):9–14.
Tiihonen J, Isohanni M, Raesaenen P, Koiranen M, Moring J. 1997. Specific major mental disorders and criminality: A 26-year prospective study of the 1996 northern Finland birth cohort. American Journal of Psychiatry 154(6):840–845.
Tonigan JS, Toscova R. 1996. Meta-analysis of the literature on Alcoholics Anonymous: Sample and study characteristics moderate findings. Journal of Studies on Alcohol 57(1):65–72.
Troyer TN, Acampora AP, O’Connor LE, Berry JW. 1995. The changing relationship between therapeutic communities and 12-step programs: a survey. Journal of Psychoactive Drugs 27(2):177–180.
Umapathy C, Ramchandani D, Lamdan R, Kishel L, Schindler B. 1999. Competency evaluations on the consultation-liaison service: Some overt and covert aspects. Psychosomatics 40(1):28–32.
Vollmann J, Bauer A, Danker-Hopfe H, Helmchen H. 2003. Competence of mentally ill patients: A comparative empirical study. Psychological Medicine 33(8):1463–1471.
Von Korff M, Gruman J, Schaefer J, Curry SJ, Wagner EH. 1997. Collaborative management of chronic illness. Annals of Internal Medicine 127(12):1097–1102.
Wahl OF. 1999. Mental health consumers’ experience of stigma. Schizophrenia Bulletin 25(3):467–478.
Wallace C, Mullen PE, Burgess P. 2004. Criminal offending in schizophrenia over a 25-year period marked by deinstitutionalization and increasing prevalence of comorbid substance use. American Journal of Psychiatry 161(4):716–727.
Warsi A, Wang PS, LaValley MP, Avorn J, Solomon DH. 2004. Self-management education programs in chronic disease. Archives of Internal Medicine 164(15):1641–1649.
Watkins K, Pincus HA, Tanielian TL, Lloyd J. 2003. Using the chronic care model to improve treatment of alcohol use disorders in primary care settings. Journal of Studies on Alcohol 64(2):209–218.
Weisner C, Schmidt L. 2001. Rethinking access to alcohol treatment. In: Galanter M, ed. Services Research in the Era of Managed Care. New York: Kluwer Academic/Plenum Press. Pp. 107–136.
Weisner C, Matzger H, Tam T, Schmidt L. 2002. Who goes to alcohol and drug treatment? Understanding utilization within the context of insurance. Journal of Studies on Alcohol 63(6):673–682.
Wessely S. 1997. The epidemiology of crime, violence and schizophrenia. British Journal of Psychiatry 170 (Supplement 32):8–11.
White WL. 2002. Addiction treatment in the United States: Early pioneers and institutions. Addiction 97(9):1087–1092.
White WL. 2004. Addiction recovery mutual aid groups: An enduring international phenomenon. Addiction 99(5):532–538.
White WL. undated. The Rhetoric of Recovery Advocacy: An Essay on the Power of Language. [Online]. Available: http://facesandvoicesofrecovery.org/pdf/rhetoric_of_advocacy.pdf [accessed September 13, 2005].
Wicclair MR. 1991. Patient decision-making capacity and risk. Bioethics 5(2):91–104.
Wild TC, Roberts AB, Cooper EL. 2002. Compulsory substance abuse treatment: An overview of recent findings and issues. European Addiction Research 8(2):84–93.
Wirshing DA, Wirshing WC, Marder SR, Liberman RP, Mintz J. 1998. Informed consent: Assessment of comprehension. American Journal of Psychiatry 155(11):1508–1511.
Wolff NP. 2004. Law and Disorder: The Case against Diminished Responsibility. Paper commissioned by the Institute of Medicine Committee on Crossing the Quality Chasm: Adaptation to Mental Health and Addictive Disorders. Available from the Institute of Medicine.
Woll P. 2001. Healing the Stigma of Addiction: A Guide for Treatment Professionals. Chicago, IL: Great Lakes Addiction Technology Transfer Center.
Wong J, Clare I, Holland A, Watson P, Gunn M. 2000. The capacity of people with a “mental disability” to make a healthcare decision. Psychological Medicine 30(2): 295–306.
Wong P, Helsinger D, Petry J. 2002. Providing the right infrastructure to lead the culture change for patient safety. Joint Commission Journal on Quality Improvement. 28(7): 363–372.
Wright ER, Gronfein WP, Owens TJ. 2000. Deinstitutionalization, social rejection, and the self-esteem of former mental patients. Journal of Health and Social Behavior 41(1): 68–90.