Last month, three ethicists from the University of
Pennsylvania argued in
the Journal of the American Medical Association that the movement to
deinstitutionalize the mentally ill has been a failure. Deinstitutionalization,
they wrote, has in truth been “transinstitutionalization.” As a hospital
psychiatrist, I see this every day. Patients with chronic, severe mental
illnesses are still in facilities — only now they are in medical hospitals, nursing homes and,
increasingly, jails and prisons, places that are less appropriate and more
expensive than long-term psychiatric institutions.
The ethicists argue that the “way forward includes a return
to psychiatric asylums.” And they are right.
Their suggestion was controversial. Critics argued that
people should receive treatment in the least restrictive setting possible. The
Americans With Disabilities Act demanded this, as has the Supreme Court. The
goals of maximizing personal autonomy and civil liberties for the mentally ill
But as a result, my patients with chronic psychotic illnesses
cycle between emergency hospitalizations and inadequate outpatient care. They
are treated by community mental
health centers whose overburdened psychiatrists may see even the
sickest patients for only 20 minutes every three months. Many patients struggle
with homelessness. Many are incarcerated.
A new model of long-term psychiatric institutionalization,
as the Penn group suggests, would help them. However, I would go even further.
We also need to rethink how we care for another group of vulnerable patients
who have been just as disastrously disserved by policies meant to empower and
protect them: the severely mentally disabled.
In the wake of deinstitutionalization, group homes for the
mentally disabled were established to provide long-term housing while
preserving community engagement. Rigorous regulations evolved to ensure patient
safety and autonomy. However, many have backfired.
A colleague of mine who treats severely disabled patients on
the autism spectrum
described a young man who would become agitated in the van on outings with his
group home staff. Fearing the man would open a door while the vehicle was
moving, staff members told his family that he would no longer be permitted to
go. When the parents suggested just locking the van doors, they were told that
this infringed on patients’ freedom and was not allowed.
Group homes have undergone devastating budget cuts. Staffs
are smaller, wages are lower, and workers are less skilled. Severe cognitive
impairment can be accompanied by aggressive or self-injurious impulses. With
fewer staff members to provide care, outbursts escalate. Group homes then have
no choice but to send violent patients to the psychiatric hospital.
As a result, admission rates of severely mentally disabled
patients at my hospital are rising. They join patients who are suicidal,
homicidal or paranoid. We have worked to minimize the use of restraint and
seclusion on my unit, but have seen the frequency of both skyrocket. Nearly
every week staff members are struck or scratched by largely nonverbal patients
who have no other way to communicate their distress. Attempting to soothe these
patients monopolizes the efforts of a staff whose mission is to treat acute
psychiatric emergencies, not chronic neurological conditions. Everyone loses.
The problem is compounded by the fact that group homes often
refuse to accept patients back after they are hospitalized. One of my patients
with severe autism and a mood disorder is on his 286th day of hospitalization.
Another with autism and developmental disability has been on the unit for more
than a year. Insurance companies won’t pay for inpatient admission once
patients are no longer dangerous, so the cost of treatment is absorbed by the
hospital, or paid for by taxpayers through Medicaid.
So institutionalization is already happening, but it is
happening in a far less humane way than it could be. The patient with autism
who has spent a year in a psychiatric hospital is analogous to the patient with schizophrenia who
has spent a year in prison: Both suffer in inappropriate facilities while we
pat ourselves on the back for closing the asylums in favor of community care.
Modern asylums would be nothing like the one in “One Flew
Over the Cuckoo’s Nest.” They could be modeled on residential facilities for
patients with dementia, who
would have languished in the asylums of yore, but whose quality of life has
improved thanks to neurological and pharmacological advancements.
Asylums for the severely mentally disabled would provide
stability and structure. Vocational skills would be incorporated when possible,
and each patient would have responsibilities, even if they were carried out
with staff assistance. Staff members would be trained to address the needs of
minimally verbal adults. Sensory issues often accompany severe intellectual
disability, so rooms with weighted blankets, relaxing sounds and objects to
squeeze would help patients calm themselves.
Facilities for chronically psychotic patients would have
medication regimens and psychoeducation tailored to the needs of those living
with mental illness.
Neither my chronically psychotic nor my mentally disabled
patients can safely care for themselves on their own. They deserve the relief
modern institutionalization would provide. Naysayers cite the expense as
prohibitive. But we are spending far more on escalating prison and court costs,
and inpatient hospitalizations. More important, we are doing nothing about the
chaos and suffering in patients’ lives.
We can’t continue to abandon our most vulnerable citizens in
the name of autonomy.