Imagine your brother has schizophrenia. When he takes his medications, he can hold a part-time job in a mom and pop hardware store. When he stops the drugs–something he does every few years because he simply does not perceive himself to be sick–your brother becomes hostile, wildly delusional (believing the radios in the hardware store are pulling thoughts out of his head), and does not come home for days at a time, sleeping in the street and eating out of garbage cans.
#ad#Clearly, your brother is someone who needs to take those medications regularly. Unfortunately, like about one-half of all patients with psychotic illnesses, he lacks insight into his condition. In fact, he thinks the medications are for a bad cold he caught back in 1988, and unless watched closely by his psychiatrist and family (he lives with his parents who dole out the meds daily), he could easily neglect to take them.
Recently, the federal Substance Abuse and Mental Health Services Administration (SAMHSA), part of the Dept. of Health and Human Services, has released its Consensus Statement of Mental Health Recovery. It is a travesty of psychiatric care. In fact, if a psychiatrist treating patients with severe mental illness followed most of the ten “fundamental” principles of recovery elaborated in the statement, he would be at risk of committing malpractice.
The statement, according to the press release, was “developed through deliberations by over 110 expert panelists representing mental health consumers [the politically correct term for psychiatric patient], families, providers, advocates, researchers, managed care organizations, state and local public officials and others.” I wasn’t one of them. Despite being a member of the Advisory Council for the Center for Mental Health Services (the arm of SAMHSA expressly devoted to the nation’s mental health services), neither I nor several other members, nor the council as a body, was shown the document and asked to comment.
Consider some of the “Fundamental Concepts of Recovery” from the Consensus Statement:
Concept #1 Self-Direction: “Consumers lead, control, exercise choice over, and determine their own path of recovery by optimizing autonomy, independence, and control of resources to achieve a self-determined life. By definition, the recovery process must be self-directed by the individual, who defines his or her own life goals and designs a unique path towards those goals.”
Concept #2: Individualized and Person-Centered: “There are multiple pathways to recovery based on an individual’s unique strengths and resiliencies as well as his or her needs, preferences, experiences (including past trauma), and cultural background…”
Concept # 3: Empowerment: “Consumers have the authority to choose from a range of options and to participate in all decisions–including the allocation of resources–that will affect their lives, and are educated and supported in so doing. They have the ability to join with other consumers to collectively and effectively speak for themselves about their needs, wants, desires, and aspirations…”
Concept #9: Responsibility: “Consumers have a personal responsibility for their own self-care and journeys of recovery. Taking steps towards their goals may require great courage. Consumers must strive to understand and give meaning to their experiences and identify coping strategies and healing processes to promote their own wellness.”
Reality check: How can a person like your hypothetical brother described above exercise full self-direction-empowerment-responsibility? His “choice” would be not to take his medication–a choice that leads to relapse rather than recovery. Should we let him, and the thousands like him, hit rock bottom every once in a while, as the Consensus Statement seems to suggest?
The list continues, rounded out by vague feel-good directives and descriptions. Recovery should be “holistic” yet it is a “non-linear” process, says the statement. What? Also, patients should be treated with “respect,” and, of course, there must be “hope.” Reminding “providers” of the need to respect patients and instill realistic hope is patronizing. Such principles are vital to good care, as we learn in medical school and residency. True, they are not always practiced, but this reflects the separate, real problem of the uneven quality of mental health treatment available.
This is déjà vu all over again. In 2003, President Bush’s New Freedom Commission on Mental Health released its report, “Achieving The Promise: Transforming Mental Health Care in America.” President Bush had charged the 22-member group with making a “comprehensive study” that would “advise [him] on methods of improving the system.”
Though more detailed and somewhat more sophisticated than the Consensus Statement, the Freedom Commission report was also woefully incomplete. It, too, failed to take on the most difficult cases, and considered severe mental illness only in terms of a “recovery model.” The model holds that sufficient therapy, housing options, and employment programs will enable people with schizophrenia or manic-depressive illness to take charge of their lives. Many will, but thousands won’t.
The problem with the recovery vision is that it is a dangerously partial vision. It sets up unrealistic expectations for those who will never fully “recover,” no matter how hard they try, because their illness is so severe and their dependence on medications so great. By neglecting the needs of the most severely ill–that is, the individuals whose very awareness of being sick is blunted–the Consensus recovery guidelines are applicable to only half of those with mental illness. Picture the outrage that would be aimed at the National Cancer Institute if it sent out “recovery guidelines” on breast cancer that ignored half the clinical population of women with the disease.
What’s more, exclusive emphasis on recovery as a goal steers policymakers away from making changes vital to the needs of the most severely disabled. (See here.)
Every few years, there are calls to abolish SAMSHA, which was created in 1992. It should be. The main task of SAMSHA is to allocate the state mental-health and substance-abuse block grants. It is a bureaucracy that could be absorbed by the Health Resources Services Administration. Discretionary grants for pilot programs–those that can actually survive a rigorous review–could be controlled by evaluation scientists at the National Institute of Mental Health and the National Institute on Drug Abuse.
The new Consensus Statement only fuels the well-deserved image of an agency that is often sorely misguided and naïve in its approach to the most vulnerable (and costly) of its constituents: the severely mentally ill.