This story from Stephany's blog is tragic to say the least. Why are none of the the parent and family advocacy groups known for advocating for children's mental health treatment and family-driven care talking about this? Advocacy groups bring a message that mental illnesses are the result of a broken and/or diseased brain. In fact declare, the disease can be treated safely, with medication. Like any other disease.

This statement denies the real world outcomes of those who are dead and disabled as a result of taking psychiatric medications. Failing to provide any information on the very real risks, inherent in the medications, while declaring them to be necessary and harmless; particularly for children, is suspect. Spreading the news about the the safety of medications in the treatment of an ever-expanding catalog of "brain diseases" while failing to provide a balanced view, specifically, real world outcomes of their use; is not advocacy with any integrity, in my humble opinion.

Why is it that biased "Educational Literature" is all that is available to desperate parents looking for help? Where does it come from? Many parents and other family members believe the safety and efficacy message without question; they feel informed, empowered even, by being involved with these advocacy and support groups. Advocacy groups are not obligated to, and do not inform those seeking information and support about the Conflicts of Interest which exist in the educational materials used. So called, "Facts on Mental Illness" and "Medication Fact Sheets" distributed often use biased statements, which are opinions, written by marketing departments; NOT information based on science.

The source of the information is not cited or disclosed and is often the drug manufacturers themselves; who pay for the printing and distribution of the materials through donations to the nonprofit advocacy groups. So, in effect, this literature is more in the nature of direct consumer marketing and advertising of the drugs. To be educational, (not commercial) would require the information be based on relevant research, and it would require an unbiased presentation of information. To provide education and advocacy for those who are in need of support in coping with a diagnosis that is ethical and person-centered with transparency; these issues need to be addressed. Literature which is developed and funded by drug companies would also provide the added benefit of a charitable contribution Income Tax deduction for the "donor."

A current example of a Conflict of Interest that in my opinion is alarming, CABF, now called The Balanced Mind Foundation, has 6 scientific advisory board members who are currently getting money for working with/for the manufacturers of the medications they are recommending. One of them, Joseph Biederman, lost his job a Harvard due to research fraud in the research of the diagnosis and treatment of bipolar in children. Apparently, lack of ethics and fraud now qualifies psychiatrists for an advisory position for a nonprofit advocacy group!

Information on Informed Consent according to the American Medical Association which Psychiatry uses:

Informed consent is more than simply getting a patient to sign a written consent form. It is a process of communication between a patient and physician that results in the patient's authorization or agreement to undergo a specific medical intervention.

In the communications process, you, as the physician providing or performing the treatment and/or procedure (not a delegated representative), should disclose and discuss with your patient:

The patient's diagnosis, if known;
The nature and purpose of a proposed treatment or procedure;
The risks and benefits of a proposed treatment or procedure;
Alternatives (regardless of their cost or the extent to which the treatment options are covered by health insurance);
The risks and benefits of the alternative treatment or procedure; and
The risks and benefits of not receiving or undergoing a treatment or procedure.

In turn, your patient should have an opportunity to ask questions to elicit a better understanding of the treatment or procedure, so that he or she can make an informed decision to proceed or to refuse a particular course of medical intervention.

This communications process, or a variation thereof, is both an ethical obligation and a legal requirement spelled out in statutes and case law in all 50 states.

In my opinion, Informed Consent does not occur in mental health treatment. This opinion is based on just under 20 years of accessing mental health care for myself and my two sons. The first time I read the Ethics Guidelines for Informed Consent approximately 8 years ago, I became profoundly aware of a betrayal of trust that had in fact occurred; particularly in my son Isaac's care. I have yet to have one of the conversations described above with a psychiatrist, or any other prescriber of psychiatric medications. I no longer believe my experience unusual, nor do I believe it is due to my son's mental health services being paid by Medicaid. Psychiatry as a profession, does not value or comply with The Ethics Guidelines for Informed Consent; in the real world they do not have to. In the words of one Psychiatrist and children's advocate, "Parents who objected to medical treatment would be seen as at best ill informed and at worst impaired themselves."

Final Thoughts

How do advocacy groups advocating for medication without acknowledging adverse events and outcomes of long-term medication use affect the current effort to transform the current mental health system in which client-centered and family-driven services are the goal?

How is the goal in which TRANSPARENCY in all aspects of policy and program development, recognized as a necessary value, being affected by advocacy groups? This question is specific to groups who receive funding from the pharmaceutical industry directly or indirectly; or whose advisors and/or board members do.

Why is Informed Consent ignored for the practice of mental health care?

Is is possible that everyone who disagrees with a psychiatrist or other mental health prescriber, on a medication issue is "ill informed" or "impaired?"

Does the perception a person is "ill informed" or "impaired" exclude them from client-centered and/or family-driven care and Informed Consent is not required?

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