When e-patients are denied alternatives – that is crazy: Will the Participatory Medicine movement impact coercive psychiatry?

By Maria Mangicaro

Participatory Medicine is a new  paradigm in healthcare spearheaded by the Society for Participatory Medicine (SPM).  The organization defines Participatory Medicine as a cooperative model of health care that is : “a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

The movement is one that promises to enhance healthcare efficiency,  transform the experience for both the patient and their providers, and improve  healthcare outcomes.  This cultural shift requires adaptation among healthcare  professionals (including physicians) as well as patients and  caregivers. [1]

SPM recognizes the value of empowerment during the recovery process and acknowledges the possibility that economic inequities can interfere with a patient’s ability to become empowered.  The Journal of Participatory Medicine recently published the article, “Participatory Medicine: Must You Be Rich to Participate?”,  expressing fears that the Participatory Medicine movement may be leaving too many people behind.

Advocates should consider not only are many mental health patients being left behind, but in many circumstances they are completely excluded from the Participatory Medicine movement.

SPM promotes advocacy supporting a patient’s right to obtain their own data.  In a story published today,  Patient’s fear of being ‘difficult’ may hurt care, SPM member Hugo Campos writes:

“I want to be empowered, I want to be in charge, I want to know what’s going  on,”   “My understanding of their [his doctors] perception is they want me to consent, comply and  basically shut up – to let them do their job,”  Read the full article here.

Many mental health patients feel this way too and they are being denied much more than just data.  Some mental health patients are legally forced to contract services of providers who prescribe a potentially lethal medication management regime.   Their options are limited and alternatives are not made available.

Most of the literature associates empowerment with personal control, an aspect of life that many individuals who experience symptoms of psychosis or mania may end up loosing permanently.

Rappaport (1987) points out that “by empowerment I mean our aim should be to enhance the possibilities for people to control their own lives” (p. 119). Cochran (1986) believes that people understand their own needs far better than anyone else and as a result should have the power both to define and act upon them. The Ottawa Charter for Health Promotion notes that “people cannot achieve their fullest health potential unless they are able take control of those things which determine their health” (World Health Organization, Health and Welfare Canada, & Canadian Public Health Organization, 1986, p. 1). [2]

Unlike any other medical condition, symptoms of severe mental illness create many obstacles that must be overcome for patients to become enabled, empowered, and engaged.   Overcoming these obstacles and establishing provider-patient partnership has the potential to improve treatment results and possibly help reduce health care costs, crime rates, recidivism, and homelessness. [3]

Coercive psychiatric treatment tends to have an adverse effect on  patient empowerment because of the loss of autonomy and exclusion from participation.  Forced medication management also limits a patient’s ability to choose safer alternative treatment options, or in some cases denies the patient completely of the right to choose alternative, integrative or complimentary therapies.

THAT’S CRAZY is a documentary project in New York by Lise Zumwalt exposing coercive psychiatry and forced medication management.  Click here is you are interested in supporting That’s Crazy through Kickstarter.  There are only six days left to reach the goal of $15,000.

The film is about Eric and two other mental health patients who are on the frontlines of a revolution in mental health.  They are part of a new phenomenon – a growing number of people who say we need to rethink mental illness. The critics are the patients.

PATIENT NAME:The Mental Health SystemDIAGNOSIS: BrokenSIGNED BY: The Patients
CLINICAL SUMMARY: THAT’S CRAZY is the story of Eric and two others who are on the frontlines of a revolution in mental health. They are part of a new phenomenon – a growing number of people who say we need to rethink mental illness. The critics are the patients.
STATUS: Eric, a genetics major, and his father, a doctor living in Madison, Wisconsin never thought they would challenge the mental health system. But when Eric, diagnosed as schizophrenic, decided to refuse his medications because they made him feel worse, the county issued a set of court orders that allowed police to pick him up and take him to a local hospital to be force medicated. Eric’s decision to refuse involuntary treatment with the help of his family and mental health activists triggers a series of personal, medical and legal battles that are captured with Iphones, Flip and Hi Def cameras by everybody involved as the events take place in real time.

Eric’s goal – to try a talking based treatment that has the highest success rate for psychosis in the world. Leading mental health activists and allies such as David Oaks and Robert Whitaker explore the science and the ideas behind the movement that believes people like Eric have a right to a voice and a choice in their treatment. Stylized verite reveals the story – animation by Em Cooper illustrates the inner experience.

“When I talk to family members of people with psych diagnoses who support coercion, I know it’s a well-meaning love. They see this upset family member perhaps disrupting their home environment, frequently ending up locked up, in the street so I have total compassion; what do you do at that point.The thing I don’t get is why not have a dialogue with people who have reached full recovery. Where’s the curiosity about full recovery? We have people in our movement who have been institutionalized repeatedly, homeless, revolving door for decades, multiple suicide attempts and yet they’ve somehow found this way for the human spirit to come back in a lot of diverse ways. So where’s the curiosity about how folks got better?”   David Oaks, Psych Survivor Human Rights Activist, Executive Director, MindFreedom International


The Process of Empowerment: Implications for Theory and Practice

John Lord and Peggy Hutchison Published in Canadian Journal of Community Mental Health 12:1, Spring 1993, Pages 5-22.


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