3
Supporting Patients’ Decision-Making Abilities and Preferences

Summary

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,



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Improving the Quality of Health Care for Mental and Substance-Use Conditions 3 Supporting Patients’ Decision-Making Abilities and Preferences Summary 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,

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Improving the Quality of Health Care for Mental and Substance-Use Conditions 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 BOX 3-1 Rules for Patient-Centered Care Customization based on patient needs and values. The system of care should be designed to meet the most common types of needs but have the capability to respond to individual patient choices and preferences. The patient 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.

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Improving the Quality of Health Care for Mental and Substance-Use Conditions 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 1   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.

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Improving the Quality of Health Care for Mental and Substance-Use Conditions 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 2   Individuals with mental illnesses also historically have been stereotyped as possessing a number of other negative attributes, such as lack of interpersonal skills; the display of alienating behaviors; and among the seriously mentally ill, unattractive appearance (Farina, 1998; Martin et al., 2000).

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Improving the Quality of Health Care for Mental and Substance-Use Conditions likely to foster and support patients’ self-management efforts; and (3) by promoting discriminatory public policies that create barriers to patient-centered care and recovery. All three of these effects of stereotyping can contribute to poorer health outcomes (Link and Phelan, 2001). Understanding them can point to ways of remedying them and thereby promoting patient-centered care. Adverse Effects on Patients’ Ability to Manage Their Care and Achieve Desired Health Outcomes As noted below, the adverse effects of stigma lead down a pathway to diminished health outcomes. The steps along this pathway are depicted in Figure 3.1 and described below. FIGURE 3-1 The stigma pathway to diminished health outcomes. Diminished Self-Esteem Stigma influences not just how individuals with M/SU illnesses are perceived by others, but also how they perceive themselves (Farina, 1998; Link and Phelan, 2001; Wahl, 1999; Wright et al., 2000). Individuals with a mental illness who have greater concerns about or experiences with stigmatization3 have lower self-esteem (Link et al., 2001; Wright et al., 2000), perform more poorly on tasks (Farina, 1998), and have weaker social and leisure relationships and interactions (Perlick et al., 2001), all of which are associated with a greater risk of relapse or no remission (Cronkite et al., 1998; Sherbourne et al., 1995). Among individuals with mental health problems, stigma also is associated with not taking prescribed medications (Sirey et al., 2001) and is a significant reason why some individuals do not seek treatment (SAMHSA, 2004b). Moreover, stigma leads to self-deprecation and compromised feelings of mastery over life circumstances (Wright et al., 2000), and thereby diminishes beliefs and expectations regarding self-determination and the ability to make decisions on one’s own behalf. In short, diminished self-esteem correlates with decreased belief in “self-efficacy” (Markowitz, 1998). 3   Evidence suggests that actual experiences with social rejection are likely to be a more powerful influence than the expectation of rejection (Wright et al., 2000).

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Improving the Quality of Health Care for Mental and Substance-Use Conditions Decreased Self-Efficacy Perceived self-efficacy refers to a person’s belief that that he or she is capable of carrying out a course of action to reach a desired goal. Self-efficacy beliefs touch every aspect of peoples’ lives—whether they think productively, self-defeatedly, pessimistically, or optimistically; how well they motivate themselves and persevere in the face of adversity; their vulnerability to stress and depression; the life choices they make; the courses of action they pursue; how much effort they will make in pursuing a course of action; and their emotional reactions to the course of events. Self-efficacy also is a critical determinant of how well knowledge and skills are obtained (Pajares, 2002) and an excellent predictor of behavior. Unless people believe they can produce desired events through their actions, they have little incentive to act. Self-efficacy beliefs are constructed from four main sources of information: personal experience of mastery; vicarious experience through others with similar characteristics; verbal persuasion; and physiological capability, strength, and vulnerabilities (Bandura, 1997b). There is evidence that self-efficacy is key to individuals’ successful self-management of a variety of chronic illnesses and achievement of resulting improvements in health outcomes (Lorig and Holman, 2003; Lorig et al., 2001; Shoor and Lorig, 2002), as well as an important component of recovery from substance use (Samet et al., 1996). Self-efficacy is among the most powerful predictors of favorable posttreatment outcomes among treated alcohol patients (Project MATCH Research Group, 1998). It is also theorized to be a common mechanism in the effectiveness of psychosocial treatments for a variety of mental illnesses (Bandura, 1997a; Mueser et al., 2002). Impaired Illness Self-Management Illness self-management encompasses the day-to-day tasks an individual carries out to live successfully with chronic illness(es). Experts in the study of effective illness self-management interventions identify five core skills needed by patients: problem solving, decision making, resource utilization, formation of an effective patient–provider relationship, and taking action. These five skills are necessary to manage the effects of illness in three areas: medical or behavioral health practices, social and interpersonal role functioning, and emotional management (Lorig and Holman, 2003). These skills pertain, for example, to monitoring illness symptoms; using medications appropriately; practicing behaviors conducive to good health in such areas as nutrition, sleep, and exercise; employing stress reduction practices and managing negative emotions; using community resources appropriately; communicating effectively with health care providers; and practicing health-

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Improving the Quality of Health Care for Mental and Substance-Use Conditions 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 4   A recent analysis of self-management education programs (Warsi et al., 2004) found a small to moderate effect on outcomes for some clinical conditions (diabetes and hypertension) but no significant consistent benefit for asthma programs. This same analysis noted wide variation in the methodologies used and inconsistent reporting of measures of self-efficacy in these programs. Experts caution that many programs calling themselves self-management programs do not teach all the core skills involved and fail to address the necessary scope of issues (Lorig and Holman, 2003).

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Improving the Quality of Health Care for Mental and Substance-Use Conditions (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.

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Improving the Quality of Health Care for Mental and Substance-Use Conditions 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

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Improving the Quality of Health Care for Mental and Substance-Use Conditions 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 5   The term “serious emotional disturbance” is found in multiple federal statutes and regulations (e.g., the Individuals with Disabilities Education Act [IDEA], Public Law 101-476) and has thus pervaded the vocabulary of mental health care for children.

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Improving the Quality of Health Care for Mental and Substance-Use Conditions 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-

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