Dying with Your Rights On: Mental Illness, Civil Rights and Saving Lives

I am a psychiatrist who has treated patients for over 35 years, but I still cannot bear to read or hear a story of a fatal outcome for a person with a serious mental illness who dies from neglect or some form of self-harm.
06/07/2011 08:19am ET | Updated August 7, 2011
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I am a psychiatrist who has treated patients for over 35 years, run all varieties of psychiatric services and worked in city and state government. But I still cannot bear to read or hear a story of a fatal outcome for a person with a serious mental illness who dies from neglect or some form of self-harm. I was especially distressed to read an article in The New Yorker (Rachel Aviv, May 30, 2011, Annals of Mental Health) called "God Knows Where I Am: What should happen when patients reject their diagnosis?" The article deeply troubled me because of the outcome for the person it profiled: Linda Bishop was found dead, presumably from starvation and hypothermia, in a home she had broken into in New Hampshire several months after she had a two-year psychiatric hospitalization. Her last journal notation was in January 2008, and her body was accidently discovered in May.

Neither Bishop's sister, a longtime advocate for her (who works in the justice system) whom a court years earlier declined to make Bishop's legal guardian, nor Bishop's daughter were informed of her condition during her extended stay in New Hampshire's state hospital -- nor were they told when she was discharged. Instead, a fantasy relationship that Bishop had for years in her head, with no contact with the man, was her plan for support, even marriage, upon leaving the hospital.

The story of Linda Bishop's multiple psychiatric hospitalizations, her misdemeanor (non-violent) offenses and time in jail, her abandonment of her teenage daughter, her assertion that she was not mentally ill and her refusal to follow any treatment plan, the lack of evidence that she could care for herself, and the self-imposed distance from her family was all too familiar to me and my colleagues working in public mental health, even if the details of her situation may vary in some ways from others. Recognized experts (and longtime colleagues) Drs. Tom Gutheil and Paul Appelbaum in 1979 (!) aptly called this type of tragedy "rotting with their rights on."

Our laws stipulate that Bishop had to consent to provide information to her family, which she did not. Privacy violations would have been the consequence of the hospital contacting her family during the hospital stay or at the time of discharge. Bishop's "right" to live where (and how) she wanted derives from legal rulings that stipulate a person's right to live in what is called "the least restrictive setting."

The letter of the law had been met. And the patient died.

Arguments have been made on the polar extremes of this dilemma. On one side are patient rights advocates who are stalwart about privacy and self-determination. In fact, legal organizations are present to defend these rights in state hospitals throughout this country. Considerable legal rulings now protect individuals from involuntary hospitalization and involuntary treatment by requiring court action to achieve both, with the exception of emergency situations. On the other side are advocates calling for increasing commitments of people with serious mental illness, including outpatient commitment (and requiring that those committed take psychiatric medications for their disorders), and longer hospital stays.

Never having been one for extremes, except maybe when it came to my playing sports, I believe there are viable middle grounds -- even if difficult to reach.

For example, nine years ago the first Mental Health Court was established in New York City, under the remarkable (and continued) leadership of Judge Matthew D'Emic. There are now seven such courts in NYC, about 25 in New York State and approximately 200 around the country (not counting drug and domestic violence courts). A mental health court accepts referrals from other courts where there appears to be a mental illness complicating the crime. Court mental health specialists evaluate the person for a mental illness, and if present, the defendant can plead guilty (in New York State) and be "sentenced" to court ordered treatment under the supervision of the judge; other states may divert the person from jail, have charges held in abeyance pending completion of the treatment program, or other procedures according to local statute. This form of supervised treatment is typically for a year (the maximum sentence for a misdemeanor). More recently, there are mental health courts working with felons where the court ordered treatment can go on for years.

For example, outpatient commitment already exists in almost every state (this has been the case in New York State for over 10 years, instituted after Kendra Webdale was pushed before an oncoming subway train by a man with a psychotic illness). The law, Kendra's Law, has been renewed twice, each time for five years. We don't need more outpatient commitment (though some state statutes warrant updating); we need more outpatient treatment that works.

Which brings me to my main point: outpatient mental health services in this country don't work very well, despite the dedicated people who work for them. The result is that early intervention and the provision of comprehensive, continuous, proven (evidence-based) treatments is being delivered to less than 20 percent (!) of people who need it. That means more than four out of five people are not getting what they need for their illness and recovery. Lack of good care coupled with lack of housing are the principal drivers for the clinical deterioration, chronic homelessness, use of jails and prisons as institutions to contain people with mental disorders, and suicidal and violent behaviors among those who are mentally ill. This country is in need of a mental health overhaul, as candidly portrayed in the President's New Freedom Commission on Mental Health (December 2002; disclosure: the Commission's chair was Michael Hogan, Ph.D., now Mental Health Commissioner for the state of New York, and my boss).

Mental health has treatments that work. It has mission-oriented professionals and provider organizations. But it lacks organization, accountability and financing that pays for what is accomplished rather than what is simply done. Sounds familiar? That's because mental health care is part of health care, where the same issues apply in capital letters.

As this country grinds its way to a more responsive, and hopefully affordable, health care system, what can be done now? For one, mental health clinics can be held to specific standards of care and their licenses made dependent on delivering those standards. Measurement-based care can be introduced (and required) where improvement from mental illness is tracked just like we track blood pressure, blood sugar and lipids. Incremental financing reforms can better support evidence-based practices as well as outreach and engagement of those hardest to reach and retain in care. People in recovery from mental illness (called peers or consumers) can be made a part of the public mental health system so they serve as navigators and trusted persons for those wary of mental health care. And no one stands a decent chance of getting better from a serious mental illness without safe and reliable housing with access to quality health and mental health services.

Indifference is cruel and costly. We can make a difference. People can have their rights and their lives -- and their families, too. That's what health care, including mental health care, is really all about.

The opinions expressed herein are solely my own as a psychiatrist and public health advocate.

I receive no support from any pharmaceutical or device company.

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Appelbaum PS, Gutheil TG: Rotting with their rights on: constitutional theory and clinical reality in drug refusal by psychiatric patients. Bulletin of the American Academy of Psychiatry and the Law 1979; 7:308 317