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Lloyd I. Sederer, MD

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

Posted: 06/ 7/11 08:19 AM ET

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.

For reviews, stories and questions you want answered, visit my website, www.askdrlloyd.com.

References:

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

 
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 ...
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 ...
 
 
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11:48 AM on 06/20/2011
All too often people suffer with mental health issues but keep quiet for fear of retribution whether it be from the medical industry (doctor's, social service's etc.) or the public. It is hidden away like something to be utterly ashamed of, the fear of admitting something is wrong, the fear that if the truth does come out that you will lose everything, your family, children taken into care (worst case scenario), seen as unstable/not right in the head.

Medication is supposed to help, well maybe in the short term, what is needed is more support in the community, therapist's, counsellor's that are in it for the long haul. Throwing pills at the patient is not the solution, time, understanding and commitment is needed as well as medication to help get to the root of the cause and make a steady and positive move to regaining full health.

Until people start taking "mental health" seriously and start providing the appropriate means necessary for people to get "well" then unfortunatley for some, the prospect of death is ineviatable.
04:33 PM on 06/12/2011
We have more mental health treatment than ever before , including tens of millions on brain damaging drugs, so why are there more mantally ill than ever ?
04:29 PM on 06/12/2011
You can't measure mental health improvement as you measure whether a drug lowers blood sugar because the outcomes can't be accurately measured . You cant even accurately measure the effects of type two diabetes drugs because many of them have so many fatal side effects that people are more likely to be dead in several years if they take them.

If psychiatric drugs are doing such a great job , why are there far more mentally ill than in past decades and why are there so many mass shootings ?

Psychiatric drugs don't pass accurate double blind srrutiny and have life destroying side effects. Some references on psych drugs are www.antidepressantsfacts.com/pinealstory.htm ,
books by Robert Whitaker,, Joanna Moncrieff, Peter Breggin,and many others.
02:19 PM on 06/11/2011
This video provides some insight into who benefits first and foremost from the increasing use of psychiatric medications -- whether that use is voluntary or forced -- and why the backers of these drugs have such influence: http://www.youtube.com/watch?v=E9em-6sTzvk&feature=player_embedded
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HUFFPOST COMMUNITY MODERATOR
DallasDon
Yo Yo Yo, This Is My Crow... ✈. Bye, Yo.
10:11 PM on 06/09/2011
"Better Living Through Chemistry!"
12:22 PM on 06/08/2011
It seems to me, in Canada, that if enough citizens really cared about the disgraceful, inhumane care for the seriously mentally ill, they would make their voices heard--LOUD and PERSISTENT.

Is the task of correcting the problems too onerous and complex and expensive? Is there some foolish shame about caring too much about insanity. Many organizations name Advocacy as their mission, but they seem to run out of money ,then must depend on goverment funds, which keeps them in line and prevents them from doing the useful advocacy we need to fix the current mismash:
The Mental "Health"System.

I have been involved in advocacy for the last thirty years, following the suicide of my 20-year-old schizophrenic son. I worked as Executive Director, Schizophrenia Society of Ontario, an organization that has lost its way. Since I retired, I have become concerned for all seriously mentally ill people (not just schizophrenia, which killed my son). So, it disturbes me to see that our care system care has become too little funded, and has degraded, not improved, over the last 30 years. False prophets have revisited and then "bought" unproved, no-science assumptions that families are to blame, that serious mentall illnesses have a social, not a medical cause. They ignore the latest scientific brain research, dismissing it out of hand, but accept junk science, uncritically.

Meanwhile, the poor souls ,who develop these no-fault mental illness, do not receive the kind of care desperately need.
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somewhatodd
micro-bio undetectable to the naked eye
11:17 AM on 06/08/2011
prior to any significant expansion of the powers of psychiatrists i'd like to see that profession somehow manage to purge its own ranks of the radavan karadzic's and the nidal hasan's before they kill us all.
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09:34 AM on 06/08/2011
Until mental health care stops hurting so many of its patients, I cannot in good conscience support more of it. After 9 years of mental health care, having encountered dozens of therapists, nurses, doctors, and dietitians, I have only just found a couple who have done me more good than harm. Most mental health care situations I have been in have perpetuated my mental illness by treating me abusively, both according to the professions own definitions and the statutory definitions. I know that there are a great many people who do find actual help and healing in mental health care, but I also know too many people who have come out more damaged than they went in. Mental health is precious and that is a gamble that I cannot in good conscience encourage someone else to take. Our society is generally more comfortable with mandates that demand harm be reduced rather than that happiness be increased. Likewise, I take the position that reducing harm (by staying out of mental health care) is more important than increasing happiness (by going into mental health care), especially when it is a gamble as to what will happen inside that mental health care.
08:09 AM on 06/08/2011
Most mentally ill persons live at the poverty level. That fact alone greatly increases stress. Along with prescribeing meds, write a prescription for money so these folks can have a decent place to live, food to eat, clothes, trensportion, etc. Most will need a financial gaurdian to oversee the patients finances. The VA has a good program which not only provides medical support, but also financial support. Who would pay for this? Who pays the doctors and the pharmeceutical companies? There seems to be a wide gap in the income levels between the mentally ill and the people who profit from the mentally ill.
01:04 AM on 06/08/2011
Two years is a long time to have been locked inside a psychiatric institution. I can well imagine that experience having been so horrible that Linda Bishop would've preferred to face the possibility of freezing or starving to death than to seek help from the system ever again. The psychiatric system in the U.S. teaches people to avoid seeking help because doing so can result in treatment so brutal and barbaric that it might be a fate worse than death, and once the system has you in its clutches there is nothing you can do to get away -- nothing but wait for it to end. Forced treatment means that people can be legally forced to endure any kind of treatment the state chooses to subject them to, no matter how bad and damaging it might turn out to be.

Truly humane mental health treatment can be even less expensive than some of the very bad treatment people are subjected to now, but it has to allow people to have a say in how they are treated. There are now too many people who can make a lot of money by abusing people in the name of "treatment". It's harder for powerful and influential people to come up with humane alternatives for people in crisis to choose from than it is for them to just mandate that these poor, unfortunate "others" have no choice but to accept whatever treatment is decided on for them.
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aurora59
Sarcasm: just one of the many services we offer
05:06 PM on 06/08/2011
Well spoke and oh so true. Fanned and faved!
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HUFFPOST SUPER USER
RedDogBear
09:30 PM on 06/07/2011
As I've been reading and commenting one thing occurred to me. This seems to me to be one example of what Naomi Klein calls the shock doctrine. The pattern is:

1) Withhold funding from an essential service to the point where awful things start to happen.

2) Then proclaim that we must "reform the system" by taking away basic civil rights and/or giving money to large corporations to fix the problem.

I agree with many of the people who are describing the horror of our mental health care system. Its unfortunate that some of them such as Dr. Sederer and Mia Nodecker think that the answer to this problem is to take away basic civil rights from the mentally ill. That's not the answer. We need to provide humane mental health services that are available to all.
12:01 AM on 06/08/2011
I agree.
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HUFFPOST SUPER USER
TWeissMA
http://www.disabilitymessage.com
08:40 PM on 06/07/2011
Mental illness leading cause of disability in youth
http://thechart.blogs.cnn.com/2011/06/06/mental-illness-leading-cause-of-disability-in-youth/

"Mental health problems such as depression account for nearly half of all disability among young people between the ages of 10 and 24, according to a new study from the World Health Organization (WHO). Among adolescents and young adults, 45 percent of disability was related to depression, bipolar illness, schizophrenia, and other mental disorders, including alcohol abuse."

Why don't you tell us about the support you have for People with Disabilities, 'leaders,' of America? While you are at it, why don't you tell us the date you plan to ratify The Convention on the Rights of Persons with Disabilities?

PAKISTAN has now ratified The Convention; can America?

Or don't you care, 'leaders?'
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HUFFPOST SUPER USER
TWeissMA
http://www.disabilitymessage.com
08:35 PM on 06/07/2011
The leaders of entire nations have continuously ignored the rights, education, and defense of people who experience disabilities. An article this very day states that nearly half of all disabilities - forty-five percent (!) - experienced by young people between 10 and 24 years of age are mental health disabilities such as depression, bipolar disorder, and schizophrenia.

Yet where is America concerning the ratification of The Convention on the Rights of Persons with Disabilities? What a terrible message to send to the young people in America. Efforts to dismantle Medicare and Social Security *also* send a huge, huge message that the leaders of this nation just don't care.

While the mental health disabilities being experienced by these young people may or may not be directly related to the actions of leaders - you can bet these young people's mental health is surely being affected by the actions of the leadership in this nation.

This article describes very well how badly the leaders of America are performing in relation to disability rights, education, and defense of People with Disabilities in general.

OMG.
08:03 PM on 06/07/2011
Mental health courts do help; except they cannot help until after the crime has occurred. Too late to be called early intervention. Yes, we need accountability. Yes, the system will always utilize new money. Yes, the guise of confidentiality has been the mask for poor discharge planning and aftercare. And, yes, more considerate, well funded, peer supported voluntary care will be better for many people. But, the lady of whom you wrote did not know she was ill; wouldn't accept the services offered to her. Assisted Outpatient Treatment (aka outpatient commitment) does help those people who are like her and who also may be otherwise found dead with their rights on. Its a moderate step towards sanity in the system and and desperately needed as part of that "system" in those people and their families' behalf.
05:22 PM on 06/07/2011
My teenage daughter had weekend visits with her father, my ex, who was living at his Mother's house. He was increasingly showing signs of mental illness, talking to people who were not there, making physical threats to his mother, yelling outbursts, and shunning our daughter for no reason. I had no knowledge of any of this until my daughter told me what had been going on for about a year then due to her grandmother's fear of me taking my daughter away from them, and during a weekend visit my ex was banging his head on a wall and screaming he was going to kill everyone in that house soon so his mother called the police for help. I called the mental health facility he was at to check up on his treatment, and to let them know he had a teenage daughter visiting her grandmother at his home and we were concerned with her safety. They assured me he would be in treatment for some time and to check back in a few days concerning his diagnoses. Four hours later when I picked up my daughter from her grandmothers house my ex was walking up the driveway barefoot and filthy returning to his mothers, and no one was notified of his release what so ever. The hospital lied to me about everything, and my ex passed away in his Mother's home 6 months later.