On April 1, 1944, Mary began keeping a personal diary of her experience as a patient in a tuberculosis hospital, a sanatorium. She was a professional woman in her early 30’s, married with a toddler of 15 months. She had been admitted to the hospital, according to the medical standards for care at that time, which called for months to years of rest, relaxation and fresh air—the best therapeutic regimen known then for her illness. She had to leave Bill, her husband, as well as her work, community and baby son, Mark, for an extended period of institutional care—with no guarantee of success. She did recover, over many months, yet wrote “…I feel bitter and miserable…anyone with some intelligence must surely learn how to treat oneself…” remarking on how the care she received was one to avoid, if at all possible.
It was also in 1944, after 100 years of service, that TB sanatoriums, began to close, giving way to care that could be done, effectively and more agreeably, as patients lived in their homes, walked in their own neighborhoods and were surrounded by people who knew them and wanted to help. Mary experienced the end of a once necessary but, by then, dated era.
The origins of mental hospitals, with their mission of delivering humane medical care, date back well before the TB sanatoriums: asylums, as they were first called, began in the late 1700’s abroad and the early 1800’s here in the U.S. At first, they were true to their mission. Over time, they were not—not because of their intent or the dedicated people who worked in them. Instead, patients, families and doctors came to realize that dependent, institutional living typically undid a person’s abilities to function as did their extraction from family and everyday life.
‘Mental patients’ in asylums also became (not for the first time) a target of social discrimination and stigma. To make matters worse, lengthy inpatient treatments have not delivered demonstrable rates of clinical improvement, nor ensured that people who were mentally ill would no longer be a danger to themselves or others once out of hospital confinement. Also, the great financial and social investments in hospital-based treatment have not produced desired improvements in functioning for many people with chronic mental illnesses that would enable them to build a life with relationships, school or work, purpose, and dignity—the same aspirations that we all harbor.
What makes today, right now, opportune for realizing the hopes of 50 years ago is that states and counties no longer can afford to sustain the dysfunctional and costly medical, social and correctional services that have evolved.
Massive reductions in hospital treatment for people with serious mental illnesses began in the 1960s, with the passage of the Federal Community Mental Health Act; the introduction of Medicare and Medicaid to pay for general hospital and some community services; and the widespread use of antipsychotic and anti-manic medications that brought some of the most disturbing and disruptive symptoms under control. The aims of these massive social, clinical and economic changes, at that time, were to provide better care more humanely, sustain safety for patients and their communities, and more responsibly spend public dollars.
But while inpatient psychiatric beds decreased substantially over the ensuing decades, a commensurate increase in accessible and quality community mental health services and housing did not. Some attribute the growth of shelters and street homelessness and the high prevalence of mental illness in jails and prisons with the failure to deliver on the promises of the 1960’s; this has been called ‘trans-institutionalization” where vulnerable people continue to be housed in institutions (like correctional settings or shelters) or tough it out on the streets.
What makes today, right now, opportune for realizing the hopes of 50 years ago is that states and counties no longer can afford to sustain the dysfunctional and costly medical, social and correctional services that have evolved. It is not only legally mandated (see below) but it costs less to have people live in supportive housing with mental and social services in the community than it does to pay for jails, prisons, shelters and acute care hospitals (that often ‘house’ people with mental illness admitted with infections, trauma, heart failure and the like because of their medical needs have gone neglected). Now is the time for today’s psychiatric patients to write, in journals or elsewhere, and record the transition from history’s lengthy era of institutional treatment to lives of dignity, with family and friends, in their communities.
Three principal social and economic forces make achieving safe, humane and affordable mental health (and substance use) treatment in the community now seem inescapable are: 1) requirements that people be treated in what is called the ‘least restrictive environment’; 2) that costs be controlled by managing care to ensure that cost-effective treatments prevail over financially wasteful and ineffective services; and 3) that ‘patient/family first’ care is provided, with vocal patient and family advocacy groups insisting that this works far better than services organized for the convenience of payers, practitioners and health care organizations.
While achieving these ends has to date defied real success, we now have the opportunity to try again, leveraging current, macro forces to escape centuries of institutional care in hospitals, other medical settings (like nursing homes), correctional facilities, and shelters.
The US Department of Justice (DOJ), acting on decisions driven by the Americans with Disabilities Act (ADA) and a Federal legal decision (Olmstead) has taken up the cause of people who are confined to settings that restrict their freedoms.
New York State is among many states where the DOJ has determined that entire groups of people are being denied their rights: some of these people are in nursing homes, some in adult homes (congregate settings with disproportionate numbers of adults with mental illnesses), and some in psychiatric hospitals. But no matter where they are, the DOJ has demanded of New York and other states that they re-engineer their services to ensure that these individuals live in less restrictive settings designed for them to succeed, even thrive, in community settings where they are more the masters of their own lives.
Olmstead has already resulted in plans, in New York and other states, to move people out of nursing facilities, adult homes and state psychiatric hospitals. Not only will those already institutionalized need to be given opportunities outside of where they now reside but it also will impact those about to enter institutional care who will be entitled to receive clinical services in community settings, including housing, fit to meet the needs of people with significant disabilities.
Many states have engaged managed care companies to try to stem the runaway costs of Medicaid. Some began over 20 years ago. But the early years of managed medical care, especially for mental and substance use disorders, often were characterized by profit seeking that drained money from patient care and generated corporate windfall profits. Those excesses appear to be over, at least in this country, as clinical performance goals drive contracting and consumer advocacy organizations and governments have learned to better protect their interests.
The Affordable Care Act (‘Obamacare’) will result in tens of millions of people nationally becoming insured, especially under Medicaid. New York State, with over 5 million people on Medicaid (with the state responsible for 50% of their costs), spends more per person and overall to provide medical services to these recipients than almost any other state or territory in the USA. More people entering the insurance pool, in Medicaid and commercial carriers, will further raise the demand for prudent and effective management of services and dollars—an essential alternative to sustaining financially unbearable and less than ineffective care. The vast expenditures of money on health and social services have not produced better outcomes for patients, families and communities.
Medicaid is a ‘budget buster’ in most states. And money spent on Medicaid is not available for education, transportation, safety, public health or other valued goals for a state’s citizens. In 2015 (2016 for children and adolescents), all NYS mental health and addiction services will be managed by health plans, not under The Office of Mental Health and The Office of Alcohol and Substance Abuse Services (OASAS), respectively, that heretofore have had responsibility for people with the most serious and persistent mental and substance use disorders.
What this means is that the Medicaid health plans will be the purchasers of mental health and addiction services. They will be at risk, financially and contractually, to improve access and health, using measurable, evidence based, quality services, and for doing so less expensively.
This is a profound change in the landscape of care for mental health (and substance use) patients. This has happened in other states. Generally, it has not been pretty to observe as many states have had to learn the hard way to do it right. Providers of services, as well, have had to transform their work to be in compliance with Federal mandates for ADA and Olmstead.
This second force, cost control through managed care, is upon NYS, and continues to spread throughout the nation. There is still time to get it right, but not much. Time spent pretending it will not happen or imagining that hospitals or state and municipal governments will continue to ineffectively spend disproportionate state (and Federal) dollars for high need individuals only delays the inevitable and will likely make it harder to effectively transform today’s care into better, more affordable community based services.
The use of hospitals, which by their nature abridge liberty, is the least desirable alternative for someone with an acute mental illness.
A remarkable change in the culture of health care is underway, and rapidly unfolding. Instead of ‘the doctor knows best’ or delivering services for the convenience of providers we are witnessing an inversion: services must now meet the clinical and personal need of recipients, not of those delivering or paying for them.
Recipients of services, patients and families, wisely want to be informed partners in their health care. “Nothing about us without us” is one way this has been articulated. For this to happen, medical information must be transparent and comprehensible. Data on the performance of providers (and governments) also must be publicly available, comprehensible and meaningful.
Advocates for mental health (and addictions) service recipients and families know that what works best are comprehensive, continuous, evidence-based services delivered at times and in places that allow recipients to not have their work or family responsibilities disrupted. The use of hospitals, which by their nature abridge liberty, is the least desirable alternative for someone with an acute mental illness. Everyone has something to gain from preventing involuntary treatments delivered late in the course of an illness in settings removed from family and community.
The end of tuberculosis hospitals 70 years ago heralds the future of mental health care today, with its own unique movement away from institutions and into the community.
We owe people with mental illness, including substance use disorders, ‘patient-centered’ care—not as a slogan but as a standard of practice. People in crisis or leaving acute care need immediate access to services, same day appointments or home visits, instead of waiting for days or weeks for an appointment. Clinicians will need to meet with patients (and families) outside the four walls of a clinic, in settings more natural and less stigmatizing (this is particularly necessary for younger people). Care managers and patient “navigators” will need to help vulnerable people understand how to engage and remain in care that will give them a chance at recovery.
Patients and families must be active participants in treatment, and living a healthy life, especially for the vast majority of illnesses which do not abate in days, weeks or months (the global burden of disease has now tipped to chronic disorders, mental and general medical). “Shared decision-making” is but one way to make patients partners in their care and helps them take responsibility for managing their conditions.
Humane, patient-centered services in least restrictive environments with prudently managed resources are the paths out of suffering, disability, coercion and unbridled costs.
We have learned a great deal about what treatments work (evidence-based treatments) for mental and substance use disorders. But the gap between what medical professionals know and what they do remains vast—and represents an immediate opportunity to improve the public mental health (e.g., the cost of not caring for people with serious mental illness, and addressing addiction.
Special attention needs to be paid to what is needed to keep youth in school and adults in work, or on a path to work. Medications must be prescribed in a highly judicious manner with particular attention to limiting or managing the side effects that frequently deter patients from taking them. Over-reliance on medications for children and adults, without using—instead of or in addition to—an effective psychotherapy or rehabilitation service, is unfortunate and shortsighted. Alternative and complementary medicine, including meditation, yoga, exercise, diet, and nutraceuticals, is employed by patients far more than doctors know; it needs to be welcomed into medical care as an ally, not as something alien to be eschewed.
We must enlist the help of families who can serve as an early warning system for problems in their loved ones. Most often (though not always) families also are the most reliable and enduring source of support for a person with a medical illness, including mental disorders.
All these ideas are not new. Many have been around for some time. But achieving on them will take an overhaul, not just more tinkering. We can provide better care with dignity and find ways to restore and save lives—and money. Success will depend on undaunted leadership and relentless efforts because change of this magnitude is really hard, even when indisputably needed and conditions seemingly opportune.
Humane, patient-centered services in least restrictive environments with prudently managed resources are the paths out of suffering, disability, coercion and unbridled costs. Staying the course, achieving these goals, would be something to be proud of.
This article originally appeared in the Huffington Post. Edited for the2x2project by Dana March.