A mother's love for her child is like nothing else in the world.
It knows no law, no pity. It dares all things.
Agatha Christie
I was cruising around on the web and came across "Improving the Quality of Health Care for Mental and Substance-Use Conditions" a book that is this from the Institute of Medicine and the Board on Health Care Services. This post is my take on how decision making and stigma are relevant to my experience as the parent of a trauma victim diagnosed with schizophrenia.
Chapter 2
Expectations are rising for consumer decision making in the purchase of health care and selection of treatments.
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Decision-making ability often is not anticipated or supported and often is challenged.
Decision making ability is more than "challenged;" and the professional perception of a psychiatric patient's decision making in-ability extends to others. Parents and guardians can find that their right to make Informed Consent decisions on behalf of a child is compromised, if not stripped from them altogether without Due Process of Law for not giving a child a neurotoxic teratogenic drug. Mary Anne Godboldo had CPS bring the Police with a Swat Team and a tank come to get her 13 year old daughter when she sought a second opinion, and made the decision to withdraw her daughter off of Risperdal. I was told by a psychiatrist who taught many of the psychiatrists who have "treated" my son: "Parents who objected to medical treatment they would see as at best ill informed and at worst impaired themselves."
In effect, parents apparently do not have the right to refuse to drug their children...
I can attest that I was never appropriately informed about the drugs prescribed to my son when he was a minor. I say this in retrospect, after having read the Ethical Guidelines for Informed Consent, and after hundreds of hours of research. I can further attest that my now adult son has never been informed of the serious risks for the drugs he takes on a daily basis; drugs he has been taking for over a decade, since he was 13.
My point is simply this: the stigma is so entrenched and embedded within our culture, within psychiatry and the public mental health system, that not a single one of the 6 psychiatrists who have prescribed him the drugs in the last 8 years have thought to inform, educate or even listen to him.
Due to the manner he has been treated, my son has no small amount of fear associated with clinics and hospitals, and he doesn't have any reason to trust any of the professionals he knows. I am utterly at a loss to explain or understand how mental health professionals seem to lack any awareness for how he has been traumatized repeatedly by drugs, and inpatient treatment---his PTSD symptoms are so bad when he has to go to appointments; he becomes utterly terrified.
There is no compassion or any recognition, validation or offer of support or empathy for how he feels. No offer of any actual help to process his traumatic experiences, or any help coming to terms with the profound iatrogenic neurological and emotional injuries he has sustained. No apparent willingness to understand that his lack of trust is valid; Isaac's initial iatrogenic injuries were not inflicted by the professionals he sees now; but he is acutely aware of the cause of his iatrogenic injuries. If any professional would bother to open their mind and stop looking at him as a "mental patient;" perhaps simply consider that his perceptions and his fears, even of them, just might be valid. His injuries were caused by the type of treatment they provide him now. I wonder why there is no understanding of that? Or that they need to earn his trust? Without it, there is little chance he will come to feel safe enough for them to be trusted by him. How would they ever be able to actually help him, much less learn what his level of awareness and his abilities are without his being able to trust them? First things first: earn his trust. Stop being willfully blind by refusing to acknowledge his injuries. Stop pretending that his trauma and fears are not valid; all things considered, it's despicable.
It is as if professionals do not even see him as a human being, and have absolutely no clue at all that what is causing his ongoing lack of trust of them; and is also causing him further trauma, is their unwillingness to even consider his truth. His story of what happened to him and how it hurt him is irrelevant.
The most profound negative effect of my son's treatment resulted from the denial of his humanity, the invalidation of him as a person. He was a kid who had problems; eventually he came to believe, he was the problem. Shortly after going to Child Study and Treatment Center, he realized no one was ever going to listen to him, or help him process his trauma; and that is when, "I went into my head because it was the only safe place left." He told me because he trusts me; my hope is someday he will know he can trust other people too.
Almost eight years ago I brought him home and it has only been in the last couple of years that he has shown a little self-confidence. It was obvious to me within the first week he was home that Isaac perceived any and all correction as criticism and condemnation. He was a kid who had problems who eventually felt and believed he was the problem. When a human is traumatized repeatedly and is without escape; they feel as if they are being tortured.
One cannot recover overnight or without trust. I believe my son when he tells me his story. I am grateful he trusts me and his brother; it's a start. He's doing great, all things considered.
via The National Center for Biotechnology Center Bookshelf:
only red links are embedded
Improving the Quality of Health Care for Mental and Substance-Use Conditions
Quality Chasm Series
Institute of Medicine (US) Committee on Crossing the Quality Chasm: Adaptation to Mental Health and Addictive Disorders.
Washington (DC): National Academies Press (US); 2006.
ISBN-10: 0-309-10044-5
Copyright © 2006, National Academy of Sciences.
Hardcopy Version at National Academies Press
a few excerpts:
Chapter 3
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 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
Evidence pertaining to the above stereotypes is presented in the next section. In this section, we examine three ways in which these stereotypes threaten the receipt of patient-centered care: (1) by lessening patients' ability to participate in the management of their illness and achieve desired treatment outcomes; (2) by encouraging pessimistic and nontherapeutic attitudes and behaviors among clinicians, making them less likely to foster and support patients' self-management efforts; and (3) by promoting discriminatory public policies that create barriers to patient-centered care and recovery. All three of these effects of stereotyping can contribute to poorer health outcomes (Link and Phelan, 2001). Understanding them can point to ways of remedying them and thereby promoting patient-centered care.
Adverse Effects on Patients' Ability to Manage Their Care and Achieve Desired Health Outcomes
As noted below, the adverse effects of stigma lead down a pathway to diminished health outcomes. The steps along this pathway are depicted in Figure 3.1 and described below.
FIGURE 3-1
The stigma pathway to diminished health outcomes.
Diminished Self-Esteem
Stigma influences not just how individuals with M/SU illnesses are perceived by others, but also how they perceive themselves (Farina, 1998; Link and Phelan, 2001; Wahl, 1999; Wright et al., 2000). Individuals with a mental illness who have greater concerns about or experiences with stigmatization3 have lower self-esteem (Link et al., 2001; Wright et al., 2000), perform more poorly on tasks (Farina, 1998), and have weaker social and leisure relationships and interactions (Perlick et al., 2001), all of which are associated with a greater risk of relapse or no remission (Cronkite et al., 1998; Sherbourne et al., 1995). Among individuals with mental health problems, stigma also is associated with not taking prescribed medications (Sirey et al., 2001) and is a significant reason why some individuals do not seek treatment (SAMHSA, 2004b). Moreover, stigma leads to self-deprecation and compromised feelings of mastery over life circumstances (Wright et al., 2000), and thereby diminishes beliefs and expectations regarding self-determination and the ability to make decisions on one's own behalf. In short, diminished self-esteem correlates with decreased belief in “self-efficacy” (Markowitz, 1998).
Decreased Self-Efficacy
Perceived self-efficacy refers to a person's belief that that he or she is capable of carrying out a course of action to reach a desired goal. Self-efficacy beliefs touch every aspect of peoples' lives—whether they think productively, self-defeatedly, pessimistically, or optimistically; how well they motivate themselves and persevere in the face of adversity; their vulnerability to stress and depression; the life choices they make; the courses of action they pursue; how much effort they will make in pursuing a course of action; and their emotional reactions to the course of events. Self-efficacy also is a critical determinant of how well knowledge and skills are obtained (Pajares, 2002) and an excellent predictor of behavior. Unless people believe they can produce desired events through their actions, they have little incentive to act. Self-efficacy beliefs are constructed from four main sources of information: personal experience of mastery; vicarious experience through others with similar characteristics; verbal persuasion; and physiological capability, strength, and vulnerabilities (Bandura, 1997b).
There is evidence that self-efficacy is key to individuals' successful self-management of a variety of chronic illnesses and achievement of resulting improvements in health outcomes (Lorig and Holman, 2003; Lorig et al., 2001; Shoor and Lorig, 2002), as well as an important component of recovery from substance use (Samet et al., 1996). Self-efficacy is among the most powerful predictors of favorable posttreatment outcomes among treated alcohol patients (Project MATCH Research Group, 1998). It is also theorized to be a common mechanism in the effectiveness of psychosocial treatments for a variety of mental illnesses (Bandura, 1997a; Mueser et al., 2002).
Impaired Illness Self-Management
Illness self-management encompasses the day-to-day tasks an individual carries out to live successfully with chronic illness(es). Experts in the study of effective illness self-management interventions identify five core skills needed by patients: problem solving, decision making, resource utilization, formation of an effective patient–provider relationship, and taking action. These five skills are necessary to manage the effects of illness in three areas: medical or behavioral health practices, social and interpersonal role functioning, and emotional management (Lorig and Holman, 2003). These skills pertain, for example, to monitoring illness symptoms; using medications appropriately; practicing behaviors conducive to good health in such areas as nutrition, sleep, and exercise; employing stress reduction practices and managing negative emotions; using community resources appropriately; communicating effectively with health care providers; and practicing health-related problem solving and decision making. Self-management support programs for a variety of chronic illnesses, including heart disease, lung disease, stroke, and arthritis, have been shown to reduce pain and disability, lessen fatigue, decrease needed visits to physicians and emergency rooms, and increase self-reported energy and health. These improvements in health outcomes are strongly associated with increased self-efficacy (Bodenheimer et al., 2002a; Lorig and Holman, 2003; Lorig et al., 2001).4
Components of illness self-management for individuals with chronic mental illnesses such as schizophrenia and bipolar illness (i.e., psychoeducation, behavioral practices to support taking medications appropriately, relapse prevention, and teaching of coping skills and actions to alleviate symptoms) also have been developed, tested, and found effective in addressing many of the behaviors necessary for patient recovery (Mueser et al., 2002). A standardized approach for illness self-management has been developed and empirically validated by Stanford University (Stanford University School of Medicine, 2005). Illness self-management also is included as one of the six essential components of the Chronic Care Model (Bodenheimer et al., 2002b), which is discussed in Chapter 5 and is achieving improved health outcomes for a variety of physical and mental illnesses.
Weakened Patient Activation and Self-Determination
Self-efficacy and self-management also are related to the concepts of “patient activation” and “patient self-determination.” “Patient activation” refers to the constellation of skills, knowledge, beliefs, and behaviors necessary for an individual to manage a chronic illness successfully (Von Korff et al., 1997). An “activated” patient also is one of the key elements of the Chronic Care Model (Bodenheimer et al., 2002a). Self-determination theory is concerned with individuals' innate inner resources for personality development and behavioral regulation and how these resources are influenced by social contexts so as to affect human motivation (Ryan and Deci, 2000). Research in this area has established the central importance to self-determination of three innate psychological needs: self-perceived competence (self-efficacy, discussed above), autonomy, and relatedness. This research also has shown that people must perceive themselves as competent (self-efficacious) and experience their behavior as volitional if they are to possess intrinsic motivation (Cook, 2004). (emphasis mine)
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.
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).
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 t