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In Reply: In response to the thoughtful letters about our Open Forum—the two above and the letter in the December issue from Peyser and Shadoan (1)—we would like to offer this vignette and commentary.
In a psychiatric medication clinic located in an urban center in the Midwest, a young woman arrived for her appointment accompanied by her case manager. She was a longtime client of the center and had a diagnosis of a substance use disorder and schizophrenia. Her presentation on this day was disorganized, distressed, and psychotic. At the clinic, she was greeted by a peer specialist, offered food and beverage, and encouraged to use assistive technology to organize the information she wanted to share with her doctor. The young woman sat at a kiosk, put on headphones and, when prompted, entered her responses via a touch screen. The software organized the story that she wanted to tell her doctor, at a time when she could not organize this story herself. When finished, she pressed a print icon, walked to the printer and picked up her one-page report.
The report generated by the software program summarized how this client felt she was doing, how she had been using medications, and what her goals for meeting with her doctor were. It also identified her decisional uncertainty about using medications. She brought the report into her appointment. According to the young woman and her doctor, assistive technology enabled her to effectively communicate her concerns and to participate in shared decision making.
The technology described in the vignette is part of a decision support center in a psychiatric medication clinic. It represents the types of innovations in decision support that are the future of medicine in the 21st century. As the vignette illustrates, when we move beyond medical paternalism and the related notions of compliance and coercion, innovative strategies to collaboratively engage even the most challenging clients in shared decision making often emerge. Sweeping assumptions that large groups of people require benevolent paternalism and are not fit for shared decision making are empirically unsubstantiated (2). Most people, including those with a diagnosis of schizophrenia, want some level of involvement in medical decision making (3). Reliance on unilateral decision making and involuntary interventions can lead to unnecessary curtailment of fundamental civil liberties and little clinical or psychosocial improvement (4). The 2006 follow-up to the Institute of Medicine's Quality Chasm report concluded that the principles of person-centered care can be applied to those with substance use and mental disorders. Shared decision making is a key to realizing the report's recommendation and "ensuring that patient values guide all clinical decisions" (5).
Shared decision making may not be possible in situations of temporary decisional incapacity. In such situations the use of medical guardianships, advanced crisis planning, and psychiatric advance directives may help clinicians remain faithful to clients' values and preferences. However, this does not mean that shared decision making is a privilege for those with milder mental disorders. Shared decision making is an ethical imperative and is a fundamental tenet of evidence-based medicine. People with psychiatric disabilities want to be involved in treatment decisions. Rather than excluding large groups of people on the basis of clinical or cultural characteristics, we seek ways to create assistive technologies and supports so that all people with psychiatric disabilities can participate in shared decision making.
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