The price of free will

Dr. Partovi found herself helpless trying to care for a dementia patient whose “heart failure was very treatable, but only if he would take his medications appropriately.”

[T]he hospital psychiatrist claimed that William knew his name and where he lived — and that he was very insistent on not being placed.

"But he can't take care of himself, he doesn't have food, he can't pay his bills, he won't take his medications," I replied. "It's his free will to not take his medications." Thus, he was deemed "fully competent."

Dr. Partovi tells the sad story of her patient William who eventually could barely breathe and still refused to go to the hospital. By the time he was taken to the emergency room, it was too late – he died that night.

In California it seems that people with dementia face the same standards for treatment intervention as do people with mental illnesses. William’s story may be a wake-up call for the millions of baby boomers who face the prospect that they or a loved one might become incapacitated by Alzheimer’s or dementia. Are we as a society finally going to care for all people who lack capacity to make medical treatment decisions? Or do we accept "free will" as the propaganda that allows us as taxpayers to avoid paying for proper treatment for these individuals?

Right to be psychotic

Dr. David Fennell, the outgoing Atascadero medical director, in today's LA Times:

A lot of times, a family will say: 'Please treat our son. He's ill.'"And I say: 'I'm sorry. I can't.' I know it's the best thing for him medically. But as a society we have decided you have the constitutional right to be very psychotic and medically ill — and miserable."

Legal fallacies of antipsychotic drugs

A fascinating paper was profiled yesterday on Dr. Helen's blog.

An excerpt:

The safeguarding of individual liberties is an important function of the courts. Indeed, antipsychotic medications are associated with numerous side effects ... But the implication that such medicines are mind-controlling and have the propensity to sabatoge intentionality of free thinking fundamentally misunderstands the effects that these life-saving medications have for millions of people. More crucially, the notion that antipsychotic drugs impair cognition for people suffering from psychosis is in direct opposition to the wealth of scientific studies that have demonstrated just the opposite: that these medicines improve cognition.

The lead author is Steven K. Erickson. You can read the whole study here: "Legal Fallacies of Antipsychotic Drugs"

England: Many say new law needed now

Letters to the editor in reaction to Tim Salmon's oped about his son have been fierce. A few examples ...

In all The Observer coverage last week of the new Mental Health Bill, the insightful portrayal by Tim Salmon of his son's schizophrenia best explained why we must reform the law to help patients and their carers ensure that the small number of who need it receive the treatment and protection they need. The proposals in the Mental Health Bill are essential to reflect how care is now delivered. Eight years of consultation have shown how difficult it is to find a consensus, but there is broad agreement that we must update the 1983 Act, and it is urgent that we make these changes.

- Rosie Winterton Minister of State for Health, London SW1

As doctors, we, too, have noted the linguistic shifts where people are called 'service users' when they may only be 'using' the services after legally being forced to do so. The aim, apparently, is to empower patients. In fact, health providers use this language to withdraw care. To talk of 'choices' makes it easy to present them as no longer in need. One of us has suffered a mental illness for the past 25 years. The 'care' was perfunctory and punitive. It is almost now non-existent. We were told to 'take responsibility', often by people unable to do so themselves.

- Sally Baker and BJ Brown Llanrug, Caernarfon

England: "They're getting away with murder"

There has been much public outcry in the aftermath of the headline-grabbing tragedy of John Barrett, a man with schizophrenia who killed a stranger in England.

A distraight father, Tim Salmon, talks poignantly in the Observer about stigma and the system and the impossibility of getting real help for his son in a cuture that values language and empowerment above all else - including medical intervenation. He writes that one mental health worker noted his son was "having issues" - a euphamism for his schizophrenia, and then discuses:

... the intractable and messy nature of an illness whose distinguishing feature is loss of reason. Not that you are allowed to say that, because it runs counter to the 'ethos of optimistic realism', probably promotes stigma and generally interferes with our modern desire to pretend that there are no inequalities or other unpalatable differences between people.

This extreme aversion on the part of the caring professions to calling things by their proper names is one of the most vexatious 'issues' I have encountered. The sick are no longer patients, but clients or service users and, by implication, considered capable of evaluating their own needs, entering into contractual relations with doctors and other agencies whose function is to deliver the chosen service or care package. If this seems a surprising way of approaching people who, when ill, are almost by definition 'not in their right minds', what are we to make of the recent 'best value' review of mental health services by Camden council in north London in which it proposes to give patients/clients direct payments from social services with which 'to organise and buy the services you need for yourself'? And this, when one of the most notorious symptoms of schizophrenia is an inability to understand your own situation.

Camilla Cavendish in today's Times is also up in arms about the culture of what we way seeming to matter more than the importance of what we actually do to help people.

[The] determination [of the mental health lobby] to stamp out stigma can lead them to rewrite reality. Illness has become health. Patients have become clients. Savage attacks on other people have become "untoward incidents".

Now last week’s devastating inquiry into the death of 50-year-old Denis Finnegan, murdered while cycling through Richmond Park by a paranoid schizophrenic, John Barrett, is being twisted by powerful groups who put patient "rights" above public protection.

A respected consultant psychiatrist neatly summed up his profession’s hostility to inquiries. "Being retrospective," he said, "they foster a simplistic notion of the preventability of homicides". Really? What last week’s inquiry showed was that Finnegan’s death was wholly preventable, caused by gross incompetence and arrogance — from the tribunal that discharged Barrett in the absence of his doctor, to the psychiatrist who gave him an hour's leave from hospital, to the nurses who
failed to warn the right people that he had not returned ....

The whole reaction has been surreal. On Friday the Royal College of Psychiatrists insisted that "all the professionals involved in this inquiry [must] be supported" and
announced that it is planning — a seminar. Shouldn’t someone be sacked? ...

The Mental Health Alliance, a group of 80 charities, is concerned only to emphasise that Finnegan’s death was "extremely rare". This is a familiar refrain from those who fear the public will shun schizophrenics. But it borders on falsehood. When I called the Department of Health this week, I discovered that between 55 and 63 people are killed every year by people who have recently been in contact with mental health services. At about 10 per cent of the total murder count, dare I say this is quite a lot? The charity SANE believes that at least one in three of those murders is preventable. Its analysis of 69 such inquiries finds that in half the cases, professionals had ignored warnings from family and friends. Some psychiatric patients refuse treatment. What is less well known is how many others are denied it, even when they or their relatives are crying out for it ....

There was a preference for "engaging" with patients, over "intervening". There is an understandable reluctance to act in loco parentis for adults who may at times be perfectly capable. But the jargon of "empowerment" creates nonsenses. It means a manic depressive choosing not to "engage" with social services, which then walk away. It means a schizophrenic choosing whether or not to take medication, even if he has a violent history. It means setting Barrett free to buy a packet of knives
and take a taxi to Richmond Park. In most cases, treating people who have lost
their reason as though they were rational beings leads to misery and neglect. In
a few cases it leads to death.

Short bits …

• Pete Earley testified before a congressional hearing, saying that “he was appalled that the government refused to help his son's disorder but would punish him for it.” Earley’s book CRAZY is still a hot seller – get a copy for your vacation reading stack or get your book group to read and discuss.
• Rockthepsychiatryvote on Dr. Torrey’s call to divorce mental illness from mental health …
• Alaska’s state supreme court in Myers corrected an oversight in state law, clarifying that a person’s "best interests" be taken into account when the state exercises its duty to protect an individual from themselves. (Most other state laws and the Treatment Advocacy Center’s Model Law for Assisted Treatment include similar determinations.) Myers is one of many cases decided each year in the state courts that has no real impact nationally, but can hopefully make a difference for some people in Alaska.
• “The mental health consumer needs to recognize that liberty is precious, but not everyone in our cohort can "handle" liberty …”
• Pam Wagner’s (coauthor of “Divided Minds”) recent blog entries on outpatient commitment are compelling reading, as she weighs honestly how she feels about it and hears from blog visitors what they think.

Reader response

An anonymous blog reader submitted the following comment. Because it is fairly typical of some common misconceptions about assisted treatment and our organization, we want to take a moment to respond.

Blogtac reader: Although these tragedies are certainly horrific, I am alarmed that your organization seeks to use them as justification for forced drugging.

TAC: Assisted outpatient treatment is not the same as forced drugging. It is court-ordered treatment that relies on individuals to comply with treatment orders. The majority of people who refuse medication subsequently agree to take it in oral form when informed that they must. “Forced drugging” is a phrase used by those who oppose AOT to scare people into believing that people under orders will be held down and injected. This is not the case. [Read a prior response to a reader on this topic.]

Blogtac reader: Only a very small percentage of the mentally ill are violent and, as yet, there is no reliable way to determine which people will become violent.

TAC: People with severe mental illnesses who are taking medication are no more likely to be violent than the general public. But failure to take medication is one of the top three predictors of violence. Every person with a mental illness is not, of course, violent, but those who are make national headlines, increasing the stigma on the large majority who are not.

Blogtac reader: In addition, many of the violent mentally ill *are* actively seeking help and being turned away before they commit these monstrous acts. This was certainly the case with the gentleman in New York whose crime prompted Kendra's Law.

TAC: In the two years prior to pushing Kendra Webdale to her death in front of a New York City subway train, Andrew Goldstein received 199 days of inpatient and emergency room services, on 15 different occasions, in six different hospitals from1997 to 1999. Four different clinics provided outpatient services in this time period. This is hardly the profile of a patient who was refused services - it was Goldstein who often refused treatment.

Interestingly enough, one of the many positive outcomes of the law enacted after this tragedy is that it has reduced harmful behavior for participants (47 percent fewer physically harmed others).

Blogtac reader: Your remedy (which appears to be force drugging everybody with a psych label) is worse than the problem you are trying to solve. I really hope you reconsider and give a little more thought to civil liberties.

The remedy is to save people’s lives by getting them help before they deteriorate to suicide or homicide or become a victim of violence.

In terms of who AOT affects, it is specifically and carefully designed only for the sickest of the sick, those who are incapable of maintaining their own treatment or making informed decisions concerning it. For instance, Kendra’s Law is used on less than ½ of 1 percent of all the people with bipolar or schizophrenia in the state. [Completely opposite of the prediction of the opposition five years earlier, which may be where you are getting this concept that everybody with a mental illness would be affected ...]

As to civil liberties, don’t take our word for it. Read this essay by the board of directors of the B.C. Civil Liberties Association, “Far from respecting civil liberties, legal obstacles to treating the mentally ill limit or destroy the liberty of the person.” Or some perspectives of consumers (and research on their perspectives) who have actually experienced AOT. Or voices of those who have seen how their lives were saved.

Thanks for the questions.