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Wednesday, 22 June 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, 2011 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."


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