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Professional Issues - Standard of Care
A Standard of Care
Many professional efforts and various publications have recently addressed the concept of best practice guidelines for schizophrenia and related disorders. The American Psychiatric Association, the Expert Consensus Guidelines project spearheaded by Allen Frances and published by the Journal of Clinical Psychiatry, and other individual and group attempts have been made. However, few of the resulting guidelines have addressed what is actually most critical to the person with serious and persistent mental illness - the notion of recovery.
Thus, we hope to begin a dialogue with everyone who believes in recovery as a valid outcome for schizophrenia, in order to help establish best practice guidelines which include recovery. Limited in the past by less than state-of-the-art technology, we are today mandated by the new technologies to demand the very best. Together with those who suffer from the terrible disease known as schizophrenia, we must aspire for nothing less than full recovery.
Until recently, it was believed that the long-term prognosis for schizophrenia was total disability - even though studies have shown that roughly 50% of persons with schizophrenia actually require minimal support and have good quality of life. These are the people living either with their families or independently, functioning well in society, and working or contributing in many ways.
Unfortunately, it is the other 50% who have gotten most of the attention (much of it negative). High resource utilization and unfavorable media attention, coupled with generally poor outcomes, have for the most part defined schizophrenia in the public sector, including many non-profit organizations. This has been - and continues to be - an arena that too often must contend with poor resources and low staff morale.
So with traditional and academic psychiatry reinforcing the notion that schizophrenia leads inevitably to total disability, few improvements have been made in this field over the years. And it is not unusual to find caseloads per psychiatrist of 800 patients with serious and persistent mental illness, inevitably leading to visits at least three months apart, a total disconnect between the inpatient and outpatient settings, and virtually no meaningful communication between the rehabilitation world and the psychiatric world.
One unhappy result is that roughly 90% of Americans with psychiatric disabilities do not receive any kind of psychiatric rehabilitation - despite the fact that years ago, Hargreaves and Shunway showed conclusively that rehabilitation can make a tremendous impact on long-term prognosis.
Best practice guidelines now exist for virtually every medical condition, and psychiatric disorders should be no exception. But in fact there are no best practice guidelines for the long term with respect to schizophrenia and bipolar disease. We believe strongly that this is an essential challenge for the future.
There is no doubt that these are difficult problems to rectify. As a start, we must first come to a consensus that schizophrenia and related disorders can be overcome, and that these patients can be fully reintegrated with proper interventions.
In the last few years, thanks in large part to atypical anti-psychotic medications, some aspects of schizophrenia such as cognition, negative symptomology, and disruptive mood disorders have, in fact, been dramatically improved. Yet it is these very aspects (according to the rehabilitation literature) which have often been perceived as key reasons why persons with serious and persistent mental illness haven't been able to successfully reintegrate.
Understanding that schizophrenia will finally be defeated only when we work together as a team is a necessary first step; this team must also include the person with serious and persistent mental illness and those who are most involved in his or her life. The various helping disciplines - psychiatrists, nurses, social workers, rehabilitation professionals, etc. - must accept that it is only with the patient as captain of the ship that will we truly succeed.
We must also shift from a therapeutic alliance to a rehabilitation alliance. Here the starting point must be the outcome goals of those actually struggling with recovery, including a job, a decent place to live, and a support network of family and friends. This will not happen overnight, or even in a six-week trial. It may take years; for some, it may not even be rehabilitation at all, but habilitation.
We know that this disease strikes in the formative years and can involve different degrees of impairment. But we do not yet know what defines who will and who won't be successful with their reintegration. Therefore, everyone with schizophrenia must have the opportunity to reintegrate - anything less would mean the potential loss of countless persons who could both help themselves and improve society.
We must ask the question: "How many great talents are we losing to schizophrenia simply because they haven't gotten the best treatment?" If we can agree that the answer is "Far too many," we can begin traveling together down the road leading to fully defined and generally accepted best practices for treatment of this terrible illness.
1 Half of the people who receive treatment for schizophrenia either recover completely or are able to live independently with only modest psychosocial support (Biology of Mental Disorders, OTA, 1992)
2 Outpatient treatment and rehabilitation programs for people with schizophrenia can reduce psychiatric re-hospitalization rates, improve quality of life, prevent homelessness and increase the likelihood of gainful employment (Hargreaves & Shumway, 1989)