Wednesday, June 22, 2011

The Right to Die from Mental Illness

Rachel Aviv has a superb article - "God Knows Where I Am: What should happen when patients reject their diagnosis?" - in the May 30 New Yorker.

The story takes off at a sprint. I dare the reader to put it down. Here's the first paragraph:
On October 5th, 2007, two days after being released from the New Hampshire Hospital in Concord, Linda Bishop discarded all her belongings except for mascara, tweezers, and a pen. For nearly a year she had complained about the restrictions of her psychiatric unit, but her only plan for her release was to remain invisible. She spent two nights in a field she called “Hoboville,” where homeless people slept, and then began wandering around Concord, avoiding the main streets. Wary of spies, she cut through the underbrush behind buildings, walked through gullies beside the roads, and, when she needed to rest, huddled in the bushes. Her life was saved along the way, she later wrote, by two warblers and an owl.
Linda, who was 51, had been a healthy, cheerful, intelligent child. She graduated from college, married in her late 20s, had a daughter, Caitlin, in 1985, but separated from her husband shortly after Caitlin's birth. A psychiatric illness, with paranoid delusions as the main feature, emerged gradually. In 1999 she and Caitlin fled from the persecution Linda feared from the "Chinese Mafia." At first Caitlin shared her mother's fear, but as she said in an interview with Rachel Aviv - "at some point, I just thought to myself, I know better than this." Later that year Linda abandoned Caitlin, explaining in a note that she was going to meet the governor.

For several years Linda was itinerant - often homeless, and occasionally staying with her sister Joan and her parents. After 9/11 Linda went to New York City for a time and patrolled the edge of ground zero, speaking to visitors about the importance of what had happened. In 2004 Caitlin moved back with her mother. She and Linda's sister Joan tried to get Linda to see a psychiatrist, but Linda felt she was perfectly healthy, only suffering from various forms of persecution.

In 2005 Linda was arrested after a motor vehicle accident. The authorities recognized that she was unwell and not competent to stand trial. In 2006 Linda was committed to New Hampshire Hospital. She refused medication and consistently rejected the suggestion that she had an illness. The hospital tried to make Linda's sister Joan her guardian, which would (with Joan's consent as guardian) have allowed them to give Linda antipsychotic medication, but Linda spoke rationally to the judge, who turned down the guardianship proposal.

Shortly thereafter the hospital, which felt hamstrung in their effort to treat Linda, discharged her. Four days after discharge Linda broke into an abandoned farmhouse. The diary she kept details her life from October 9, 2007 until a final note on January 13, 2008, shortly before her death from starvation.

In the house Linda lived on apples she collected. A cloud formation that looked like the number four convinced her that a delusional lover would come to rescue her on December 4. When this didn't happen, Linda gradually resigned herself to whatever God might have in store for her. The heartbreaking quotes from her diary show a sensitive, intelligent, thoroughly deluded person, struggling to deal with imaginary persecutors while starving to death.

Dealing with people like Linda Bishop, who are (a) profoundly ill but (b) do not see themselves as ill, (c) have their own version of reality, and (d) do not meet the typical criteria for involuntary detention of being an acute danger to themselves or others, is (e) the most difficult challenge for psychiatry and an unsolved ethical conundrum for society. Over the years I've spoken with innumerable concerned family members like Linda's daughter Caitlin and sister Joan. They've asked - "why can't you do something - isn't it obvious that X is deeply unwell?" I explained that X's condition was indeed obvious, but that we in the U.S. have chosen liberty over allowing imposition of control, however benevolent the intentions might be.

I see the standoff between liberty values and caretaking values as a dead heat. We've seen how totalitarian societies have abused the power to declare who is insane and in need of external control. In the 1975 film "One Flew Over the Cuckoo's Nest," Jack Nicholson embodies the spirit of rebellious liberty fighting (and losing to) Nurse Ratched, who embodies totalitarian domination. We in the U.S. place a supreme value on individual liberty. Years ago, in a visit with psychiatrists in China, I asked how they would deal with patients like Linda, who are seen as needing medication but refuse to take it. The psychiatrists did not understand the question. In China the local authorities would be told that Linda needed medication, and it would be given to her.

But stories like Linda Bishop's challenge another basic value - our sense of decency. If we saw a drowning child and had the ability to rescue it, it would be unthinkable to ignore the situation. Antipsychotic medication might not have "rescued" Linda, but not being able to try seems comparably unthinkable.

When two values - here, liberty and caring for others - deserve equal respect, it's a mistake to make one the winner, entitled to trump the other. That's what happened with Linda. The hospital felt constrained by privacy laws not to tell Caitlin and Joan that Linda was being discharged. Had I been consulting about Linda, I would have advised a discreet form of civil disobedience, as by saying - "we know how eager you are to leave the hospital, and the judge concluded you don't need a guardian, but we can't in good conscience let you leave without contact with your daughter and sister..." The situation would have been messy - Linda would have refused and insisted on leaving, to which the response would be "we want you to be be able to leave - you're an intelligent and capable person, but our conscience requires us to contact Caitlin and Joan as part of the leaving plan."

In a court trial, the outcome is binary - the defendant is either innocent or guilty. In a situation like Linda's, binary reasoning doesn't work. Linda was profoundly ill, but also impressively capable, which is what led the judge to turn down guardianship.

Death from her illness might have been inevitable, but in the final three months of her life, no one was able to try to rescue Linda from her delusions. The state motto in New Hampshire is "Live Free or Die." As applied to Linda it should be reworded - "Live Free and Die."


Anonymous said...

The problem with forcibly treating the "mentally ill" is that the definition of “mental illness” varies between cultures, eras, and psychiatrists. During the 1950s, 60s, and early 70s, Americans were routinely involuntarily committed to psychiatric hospitals because they:

* Were LGBT. Homosexuality was officially considered a mental illness that needed to be treated for the good of both the patient and the community. (At the time, most psychiatrists considered transgendered people to be flamboyant homosexuals.) Mental health professionals debated on the proper combination of electroshock, surgical lobotomy, surgical castration, and drugs to “cure” homosexuals. Even psychiatrists who felt homosexuality was not treatable used these techniques to make patients institutionalized for homosexuality more 'manageable' and 'compliant.'

Well into the 1990s, parents found psychiatrists willing to forcibly treat and hospitalize LGBT youth for demonstrating “gender inappropriate behavior.” Patients were diagnosed with gender identity disorder or tranvestic fetishism, and given a "treatment plan" where they could demonstrate "progress" by wearing "gender-appropriate" clothing and expressing interest in patients of the opposite biological sex. If they showed "insight" and "accepted their illness," their meds were lowered and they were given "privileges" such as going outside under supervision. If they were refused, they were additionally diagnosed with "oppositional defiant disorder" and given more drugs in an escalating cycle of psychiatric control.

* Annoyed their husband. In many states, women who were “difficult” could be committed by their spouse for treatments intended to help them “adjust” to marriage life. Other states required the formality of getting a psychiatrist to agree with the husband. ECT was a favorite approach as it made women less able to verbalize complaints, and terrified women who underwent the procedure without anesthesia. Psychiatrist Peter Breggin has written extensively on this subject. Lobotomies were also popular:

"In some cases, patients’ families pleaded for doctors to perform lobotomies so that the victims— mostly women— would stop worrying so much and do their housework or so they would quit having homosexual thoughts."

Anonymous said...

(Part II)
* Made religious choices that upset their families. Families were able to have their adult children institutionalized or placed under conservatorship because the children converted to Buddhism, Islam, Wicca, Hari Krishna, evangelical Christianity, or other “non-traditional” religions. Protecting the reputation of the (purportedly mentally ill) patient’s family outweighed, in the minds of the establishment, the civil rights of the patient.

* Expressed unpopular political views. Americans who (correctly) challenged the official narrative regarding US involvement in Vietnam were sometimes diagnosed with paranoid delusions. The government would not, after all, lie to get the US into a war. Patients who felt their life was too important to be lost in a nameless rice paddy were labeled pathological narcissists. Some were even thrown into the California state hospital system.

This practice has continued: In 2003, the Bush administration tried to cover-up its warrantless wiretapping program by having a government doctor falsely label a whistle-blower as "suffer[ing] from psychotic paranoia" despite lacking any of the symptoms. After the NY Times and other newspapers covered the story in 2005, the Bush Administration changed its story, telling Congress that no one in Congress was cleared to hear what Mr. Tice wanted to tell them. It is now clear that he was a legitimate whistle-blower, not mentally ill man with delusions regarding government conspiracies involving telephones.

Jim Sabin said...

Dear Anonymous -

Thank you for your extensive comments, which point to several important issues.

There's no doubt that psychiatry can be distorted into becoming an agent of social repression. The kinds of abuses you describe did occur. As residents we were taught that homosexuality was a psychiatric disorder, and that there was no point in undertaking treatment unless the person wanted to work on changing the homosexual orientation. To its credit, the American Psychiatric Association reversed its views on this, so that while many conservative religious groups still see homosexuality as an "abomination," psychiatry sees it as a normal variant in human nature.

As a resident I had a fascinating experience with regard to electroconvulsive treatment. On a quiet afternoon in our "walk in" clinic I saw a married woman who came in with her husband and parents. She was suffering from an episode of depression and anxiety, and was asking for shock treatment, which she had received in the past for similar episodes. I had no other patients to see, so we talked for an hour or two. What emerged was a series of interpersonal issues which, once we'd gone into them as a group, led to a reduction of the symptoms. The woman and her family agreed that ECT wasn't needed.

The issue of whistleblowers is especially complex. (1) People who are truly suffering from paranoia often "blow the whistle" on the target of their delusions. (2) But, people inclined towards suspicion may be readier than others to believe they are seeing secret purposes at work, and sometimes they are right. (3) And, people without a drop of paranoia who blow the whistle and then face universal criticism for questioning the emperor's new clothes may become paranoid from the experience of ostracism.

Working with patients to understand the "truth" of their situations is a challenging task, but often deeply helpful.



eric said...

Jim--We must have had Linda Bishop's twin, but a different outcome. She almost starved to death, but ultimately court-ordered ECT and meds relieved her of her delusions and she is functional again. Perhaps the title of your post identifies the proper place to draw the line between autonomy and authority: we mustn't allow people to die from mental illness. We do all we can to prevent suicide by any means. However, the gray zone here is in people with life-threatening medical illness who choose comfort care rather than possibly life-saving, but possibly lethal care. The question arises as to whether the decision to forgo possibly life-saving care may be due to depression. --Eric

Jim Sabin said...

Hi Eric -

Thank you for your commnent. It's always good to hear from you!

The "gray zone" you speak about is fascinating and important. "Depression" is itself a challenge to interpret. When is a sad mood and rejection of possibly life saving interventions a symptom of depressive illness that clouds judgment, and when is it a "normal" response to life circumstances? It's not always easy to make that distinction.

The patient you describe is unlike Linda Bishop in one important way - she was dying in plain sight, whether at home with family or in the hospital. When Linda was hospitalized she could look "normal" - speak coherently, eat her food, and take care of herself. When the hospital was unsuccessful in its effort to establish guardianship and discharged Linda, she sequestered herself in a secret place and starved to death. As best I can tell from the story, she was not trying to kill herself, but to live as best she could within the constraints of her delusions.

If an otherwise healthy 25 year old with a curable bacterial meningitis refused antibiotics I would apply a VERY high standard of competence with regard to the competence of the decision. If a frail 85 year old with advanced cancer for which a chemotherapy with substantial side effects might extend life for a month or two, a much lower standard would be called for.