Improving the Quality of Health Care for Mental and Substance-Use Conditions (2006) / Chapter Skim
Currently Skimming:
3 Supporting Patients' Decision-Making Abilities and Preferences
3 Supporting Patients' Decision-Making Abilities and Preferences
Pages 77-139
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From page 77... ...
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 substanceuse 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.
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From page 78... ...
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)
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From page 79... ...
· 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.
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From page 80... ...
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 2Individuals 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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From page 81... ...
. 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)
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From page 82... ...
. 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)
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From page 83... ...
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)
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From page 84... ...
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.
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From page 85... ...
. 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.
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From page 86... ...
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 5The term "serious emotional disturbance" is found in multiple federal statutes and regulations (e.g., the Individuals with Disabilities Education Act [IDEA]
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From page 87... ...
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.
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From page 88... ...
. These benefit limits most often are reached by individuals with some of the most severe mental illness diagnoses, including depression, bipolar illness, and psychoses.
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From page 89... ...
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.
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From page 90... ...
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)
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From page 91... ...
11As 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)
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From page 92... ...
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.
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From page 93... ...
. The model based on these four abilities was developed, operationalized, and tested over the past two decades 13Much of the evidence and discussion in this section is from three papers commissioned by the committee: "Impact of Mental Illness and Substance-Related Disorders on DecisionMaking Capacity and Its Implications for Patient-Centered Mental Health Care Delivery" by Scott Kim, MD, PhD, Department of Psychiatry and the Program for Improving Health Care Decisions, University of Michigan Medical School; "Capacity to Consent to or Refuse Treatment and/or Research: Theoretical Considerations" by Elyn R
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From page 94... ...
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)
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From page 95... ...
, 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)
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From page 96... ...
. In this respect, individuals with severe mental illnesses, such as schizophrenia, that can affect cognition (Goldman-Rakic, 1994)
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From page 97... ...
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)
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From page 98... ...
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.
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From page 99... ...
. 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)
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From page 100... ...
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)
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From page 101... ...
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)
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From page 102... ...
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)
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From page 103... ...
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)
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From page 104... ...
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.
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From page 105... ...
. 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.
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From page 106... ...
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)
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From page 107... ...
. 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)
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From page 108... ...
Summary 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.
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From page 109... ...
; 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)
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From page 110... ...
supporting illness selfmanagement 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)
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From page 111... ...
. Education has been shown to decrease stigma and improve clinicians' attitudes regarding persons with mental illnesses (Corrigan and Penn, 1999; Farina, 1998)
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From page 112... ...
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.
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From page 113... ...
. 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.
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From page 114... ...
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)
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From page 115... ...
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)
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From page 116... ...
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.
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From page 117... ...
The Quality Chasm report, for example, underscores that shared decision making is a dynamic process that changes as patients'
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From page 118... ...
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.
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From page 119... ...
. Peer support programs also are identified in the Chronic Care Model of illness management (described in Chapter 5)
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From page 120... ...
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)
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From page 121... ...
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)
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From page 122... ...
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)
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From page 123... ...
. 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)
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From page 124... ...
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)
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From page 125... ...
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)
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From page 126... ...
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 through out 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)
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From page 127... ...
Remove barriers to and restrictions on effective and appropri ate treatment that may be created by copayments, service ex clusions, 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)
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From page 128... ...
I: Mental illness and competence to consent to treatment. Law and Human Behavior 19(2)
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From page 129... ...
2000. Major mental disorders and criminal violence in a Danish birth cohort.
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From page 130... ...
2001. Three strategies for changing attributions about severe mental illness.
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From page 131... ...
1999. Clinical research in substance abuse: Human subjects issues.
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From page 132... ...
2004. Parity and Other Insurance Mandates for the Treat ment of Mental Illness and Substance Abuse.
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From page 133... ...
2001. Stigma as a barrier to recovery: The consequences of stigma for the self-esteem of people with mental illnesses.
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From page 134... ...
2003. Representative payeeship and mental illness: A review.
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From page 135... ...
2002. An analysis of the definitions of mental illness used in state parity laws.
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From page 136... ...
In: National Bioethics Advisory Commission, ed. Research Involving Per sons with Mental Disorders That May Affect Decision-Making Capacity: Volume II, Commissioned Papers.
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From page 137... ...
2004. Mental illness in people who kill strangers: Longitudinal study and national clinical survey.
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From page 138... ...
2001. Improving understanding of research consent disclosures among persons with mental illness.
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From page 139... ...
2002. Compulsory substance abuse treatment: An over view of recent findings and issues.
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