This is the second in a mini-series of posts–responses to a controversial essay by University of Pennsylvania bioethicists titled "Improving Long-term Psychiatric Care: Back the Asylum"–exploring the state of mental health care in America, and how to fix it.
Just beyond the bustle of Philadelphia, in a quiet green patch of Chester County, a derelict complex of red-brick structures provides fertile ground for various species of vines and weeds. Just as its painted stately columns shed their pristine white skins into the tangle of overgrowth obscuring its facades, the echoes of the horrors that the Pennhurst State School and Hospital once housed are fading from public memory.
Conceived in 1908, what should have functioned as a pastoral sanctuary for the care and treatment of the area's most vulnerable turned into a nightmare of neglect and abuse. Today, the formerly state-funded institution has become a Halloween-season haunted house attraction. Its central role in America's struggle for the human rights of the people living with severe mental, physical, and intellectual challenges who suffered there, and in places like it, seems long forgotten.
In 1968, Pennhurst Asylum, as it is colloquially known, became the "The Shame of Pennsylvania." Bill Baldini, a young reporter on Philadelphia's TV10 (now NBC) exposed appalling conditions there in a series of news segments called "Suffer the Little Children," replete with shocking images of psychiatric patients bound to bars of large metal cribs that seemed more like cages, and others staring vacantly, appearing overwhelmed and gutted by the vast isolation of institutional life. Almost 20 years of reform attempts marked the life of the institution, and mental health care in the United States, after Baldini's report.
A comprehensive history of mental health policy in the United States by the Kaiser Commission on Medicaid and the Uninsured notes that the policies of institutionalization were recognized as a failure–and as a civil rights issue–early on. President John F. Kennedy communicated a special message to Congress in 1963 specifically addressing the need to replace institutions with comprehensive community programs to provide outpatient care, day treatment, rehabilitation, foster-home services, and public education on mental health. Kennedy's call to Congress promised federal funding to communities and facilities, not states. The idea was simple: inhumane state hospitals would be completely replaced by integrative community programs that treated people needing services with dignity.
The same Kaiser Commission report notes that, by 1981, ideas of "cost-neutrality" were at the fore in care–an overriding concern for cost that pervades public policy on mental health today. Reagan-era, Republican-led initiatives that decried federal involvement shifted responsibility back to states. The Mental Health Systems Act, signed by President Carter just months before and meant to protect the rights of the mentally ill, was repealed. Funds for community mental health were dumped into block grants to states, minus 25 percent.
The new Reagan administration's goal was to drastically reduce human services, income support, medical care, basic living supports (such as food stamps), transportation, and education. It also accelerated "reviews" of individuals on federal Social Security Disability Insurance. As a result, hundreds of thousands of people with mental illnesses were kicked off SSDI, and left without income. At the same time, President Reagan deeply cut federal support for public housing. As low-income housing became less available, and income support was withdrawn, many of those with serious mental illnesses were left on the streets. Surveys showed that they made up at least a quarter of the homeless population.
Pennhurst finally closed in 1987. The "Shame of Pennsylvania" was defunct. But this was the kind of shame that resonated beyond the Philadelphia region, through national headlines, and up to the U.S. Supreme Court (read on). It's the kind of shame that we're reluctant, in this enlightened and technological age, to revisit. But bioethicists the University of Pennsylvania recently did just that, in a paper in the Journal of the American Medical Association that recommended a return to the institutional system of inpatient treatment. The director of the university's Scattergood Program for the Applied Ethics of Behavioral Healthcare, Dominic Sisti, and co-authors Ezekiel Emanuel and Andrea Segal, suggest that the best solution to treating the 10 million Americans with severe mental illness is a return to the asylum system of residential treatment.
"Deinstitutionalization has really been transinstitutionalization," the group writes in JAMA. "As state hospitals were closed, patients with chronic psychiatric diseases were moved to nursing homes or to general hospitals where they received episodic psychiatric treatment at significantly higher costs. Others became homeless, utilizing hospital emergency departments for both care and housing."
First, let's look at what this paper gets right: today's treatment options for mental illness are inadequate, and the lack of care has flooded the prison system and increased the homeless population with people who are in dire need of mental health care. Chillingly, almost 40 percent of those who suffer from severe mental illness will spend some time in jail. Obviously, this is unacceptable in a civil society, in our society, and in our city.
But here's what the Penn professors miss: closing the failing and abusive system of state "hospitals" wasn't the root cause of our current problem, nor is re-creating a contemporary version of it the solution. They paint de-institutionalization as a well-intentioned mistake, a movement furthered because "shocking reports about abuses at hospitals, such as Massachusetts' Bridgewater State Hospital, offended the public consciousness and added momentum to closures of psychiatric hospitals."
Implicit in that argument, however, is a disregard for why de-institutionalization happened in the first place—a new, truly enlightened concern and respect for the personhood and community membership of the severely mentally ill. There had been a societal recognition that there was a better way, and that the isolation of institutions often created more problems than it solved. The "asylum" argument misses a key historical point: the community system of treatment, the better alternative, was never given a chance to thrive, and that the social policies and funding needed to support those with mental illnesses were ripped away before they could help.
As it turns out, the real solution to de-institutionalisation is bound to Pennhurst itself, in the first federal class action suit of its kind, Halderman v. Pennhurst State School & Hospital. Filed in 1974, it went all the way to the Supreme Court. And among the many findings and judgments of the case, was a unifying theme: the severely mentally ill had the right to live, and to be treated, in the community, and the conditions of institutionalization were a violation of a patient's human right to be treated in a setting of as much autonomy and freedom as possible. It was the same duty of community care that President Kennedy called for 1963.
The point of this landmark ruling, and of the movement to close "asylums" that followed, wasn't to encourage us to build more gilded cages, or to create a new gleaming, modern, "humane" system of isolation for the vulnerable in our communities. It was to encourage us to demand that those resources be used to keep our loved ones: brothers, mothers, fathers, sisters, spouses, daughters, sons, and friends, close to us. That we finally give the community-based model of treatment a real chance. That we treat people with the most sophisticated and intensive techniques in their communities, where they have the dignity they deserve, and the right to belong.
An ethical solution to the troubles of the post-deinstitutionalized era isn't in a building or complex, relics of a past that so many recognized as faulty and fought to change. Rather, the future depends on our recognition that our communities ought to be the true places of respite, sanctuary, and support. The Penn ethicists should know that recognition of humanity happened, in part, right around here … in a quiet, green patch of Chester County.
Jaime Anne Earnest is a doctoral candidate and Lord Kelvin/Adam Smith Research Scholar in Epidemiology and Public Health Policy at the University of Glasgow, U.K.. Her work explores policy innovations for public health and the intersections of medicine, psychology, politics, and society.