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Linda Rosenberg

Former President and CEO, National Council for Behavioral Health

Asylum or Warehouse?

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Dr. Ezekiel Emanuel has mastered the art of controversy. In a recent piece, Why I Hope to Die at 75, he talks about his plan to eschew regular prostate screenings, colonoscopies, even the flu shot, and to accept only palliative treatment, but not curative treatment for diseases, he may acquire, like emphysema or cancer.

The edgy nature of his argument raised awareness of overuse of imaging and intense treatments for those unlikely to benefit. It drew ire from many, including some physicians, for “suggesting a human life becomes less valuable with age.”

Controversy sparks conversation and debate about deeper issues, even deeper than those in the headline.

So it shouldn’t have surprised me to see Dr. Emanuel’s name on an article in JAMA titled Bring Back the Asylum.

On April 21, Dr. Emanuel will be speaking at the National Council’s annual conference.  Appreciating his health policy expertise, intellect, and willingness to state his mind, we knew he would be an enlightening albeit controversial speaker. Little did I know how close to home his opinion might hit.

Dr. Emanuel and his co-authors present a simple solution, the creation of “asylums” – and we all like simple solutions – to a complex problem. They accurately describe the problems resulting from the closure of state hospitals – a form of “transinstitutionalization” from hospitals to jails, prisons and nursing homes and the revolving door admissions to acute hospitals as alternatives to community services and decent housing.

The authors are correct when they call the process of re-qualifying for benefits “confusing and onerous.” And I couldn’t agree more that people with serious mental illness placed in board and care homes are treated as “commodities”.  I’ve spent enough time in these homes to agree that many are probably “reminiscent of the private madhouses of 18th-century England.”

The solution offered by the authors is to just simply lock some people up. Most frightening is how the piece characterizes people as either high functioning and able to benefit from community services or “chronically psychotic, un- able to care for themselves, and potentially dangerous to themselves and the public.” It would seem that the authors are able to determine who belongs in which group and that once so assigned, it is a lifelong categorization and your fate is an “asylum.”

The piece is dismissive of programs like Fountain House and of psychiatric survivors – the very places and people that taught us recovery is possible and should be expected.  The hundreds of thousands of people with serious mental illness that live successfully in our communities appears to be the result of genetics and not the result of the ability of all people to make progress with the right services, supports and grit.

The piece ends with a bucolic description of the Worcester Recovery Center and Hospital.  I urge the authors to read Atul Gawande’s new book Being Mortal to understand the effects of institutionalization – how even the most well meaning assisted living and nursing homes are based on the rules of congregate living, taking away ones autonomy and dignity.

State psychiatric hospitals have improved precisely because we don’t expect people to live there permanently. I have seen the imbalance of power that is created when one group of people are in charge of another for long periods of time.

As a new college graduate I went to work in a state hospital. I saw adults marched into a communal bathroom, counted at the change of every shift.  I saw adults restrained because they dared to question staff, and patients and parents who were afraid to complain for fear of retribution.

I vowed that I would join the pioneers working to remake mental health care, from despair to possibilities.  We all agree there is still much to improve and many we are failing. In a speech last year, Dr. Emmanuel said that issues around mental health are “the big black cesspool we tend to ignore.” On this point we could not agree more.

In his controversial writings he ensures these issues will not be ignored, but widely debated. But the simple solution offered, recreating asylums, is not helpful — it’s dangerous. Dr. Emanuel has the right to give up at 75, but it is not his right to decide who should and should not live among us. Conference 2015 will be interesting.