Marie Mandy's grandmother

Belgian film-maker Marie Mandy has made a documentary about her grandmother Madeleine who underwent a lobotomy at the hands her psychiatrist husband in the 1950s.

The film, Madeleine au Paradis (Madeleine in Heaven), was shown at the Reel madness film festival in London in 2003:

"At the age of 90 Madeleine reflects on her life and impending death. A gentle and poetic meditation on life's great themes - childhood, love, marriage and war interwoven with a rich narrative, which chronicles experiences of mental breakdown and psychosurgery. This intimate documentary honours all aspects of human experience."

You get to vote!

If anyone is in London on Tuesday 18th July why not got along to the Royal Institution where an event called "From Bad to worst: the worst ideas on the mind" is being held.

"From bad to worse: the worst ideas on the mind

Prof Edgar Jones , Dr Joanna Moncrieff , Richard Webster , Prof Simon Wessely

The human mind is complex, mysterious and vital to who we are, so it's probably no surprise that over the years some treatments for mental conditions have turned out to be complicated, ridiculous and damaging to patients. In this fun and interactive event four experts will each name and shame an idea from psychiatric history and try to get the audience to name it ‘worst idea on the mind’.

As ideas on the mind go, it’s tough to get much bigger than psychotherapy. Invented by the psychological legend Sigmund Freud in the 1890s, it’s been one of the most common mental therapies ever since. But has it led to more sagging therapist’s couches than actual good? Leucotomy is better known as a prefrontal lobotomy, and is a famously radical surgical therapy that can dramatically change a patient’s behaviour. It hasn’t been practised widely since the 1950s – could it be the worst-ever idea on the mind?

It might be surprising to see post-trauma counselling nominated as the worst idea – or even a bad idea – on the mind. But some studies have shown that forcing people to talk to therapists soon after a traumatic event may actually hinder their natural coping mechanisms and make them more likely to develop psychological problems in the future. Finally, drug company advertising may be a new idea, but it’s also been nominated as the worst. If you’ve ever been exhorted to ‘ask your doctor’ about a new medication you might want to come along and see what our panel has to say.

So which of these ideas on the mind should never have entered our heads? In the end it will be the audience who decides as it all goes to a vote and one idea takes the most dubious honour in psychiatry."

Judging from the brief biographies of the participants, it is diffult to see who will be presenting the case against leucotomy. Joanna Moncrieff will presumably be paired up with drug advertising; and Richard Webster with Freud. But that leaves Simon Wessely and Edgar Jones, both of whom have a particular interest in military psychiatry and neither of whom, as far as I know, have ever written anything about psychosurgery.

Lobotomised orphans

The following article appeared in the Montreal Mirror in November 2000.

The Kristian Perspective
Lobotomized by the state
by KRISTIAN GRAVENOR
I'm running my fingers through the bristly black hair of 48-year-old Paul Saint-Aubin, an illiterate hunchback sitting at a breakfast table in Joliette. My index finger feels a series of parallel grooves that run diagonally to his forehead, almost meeting the souvenirs of two other surgical incisions that stand perpendicular to his bushy eyebrows.

He's an exceptionally easygoing guy considering the journey that followed the day the Grey Nuns told his mother--a native from the Wolinak reserve--that he died as a baby. The nuns kept him in an orphanage until age 11, then sold him into farm slavery along with six other boys where, for six years, Saint-Aubin was forced to subsist on horse and pig feed. One day when he was caught eating raw eggs in the chick coop, the man of the house tossed him onto a fence, resulting, he says, in permanent damage that has caused his back to slant dramatically forward.

As a 17 year old in 1969, Saint-Aubin pulled a Barrabas against his brutal overlords. The police came, and although being of sound mind, he was deemed "profoundly retarded" and was sentenced "indefinitely" to a mental hospital. Although effectively mute at the time, he was offered no legal representation before being sent away.

Once inside the cuckoo bin, he was doped with dozens of different medications, including Largatil, known as "the liquid straitjacket," suffered electroshock, isolation, sexual abuse and experimental brain surgery. "I was forced into straitjackets and they made me sleep in the worst section of the hospital, full of piss and shit," he says.

In 1987, after 18 years inside, his mother, who ran a pet grooming operation in Laval, used new access to information laws to find out about her long-dead son. She discovered that the nuns had lied about his fate. The two were reunited for just three years before she died of cancer in 1990.

The heart-wrenching saga might merit a skeptical ear were it not for the immaculately documented records kept by his friend, Rod Vienneau. In the last three years, the middle-aged Joliette native has doggedly researched and written a thousand letters to elected officials around the world publicizing the cause of Saint-Aubin and of other so-called Duplessis Orphans that up until the mid-'70s were tossed into psych wards with no justification.

"The province would give the nuns 75 cents a day per child in the orphanage, but they gave $2.75 a day if they were in psychiatric hospitals," says Vienneau. A UQÀM report from last year estimates that the Catholic Church made $70-million (in 1999 dollars) from the manoeuvre.

Vienneau points out that parallel victims, such as Mount Cashel or natives sterilized in Alberta were compensated for their sufferings, yet in June of this year, Premier Bouchard declared the Duplessis Orphan issue closed. "Premier Bouchard is in a clear conflict of interest," says Vienneau. "He represented the Church in court in 1961 and several members of his family are important members of the Quebec clergy."

Sitting calmly at the table is Vienneau's wife--and mother of his six children--who recounts how, after her mother died of tuberculosis, she too was forced into six years in a Catholic-run insane asylum. She tells of the ice-baths, nights spent on a bare-spring mattress, sexual abuse and other memories of her own private hell. She was sprung after her younger sister escaped to tell her father of the shocking turn of events. Amazingly, the nuns wrote to the village priest to have the sisters recommitted.

Saint-Aubin, and the thousands of others whose lives were shattered at the hands of the Church seem no closer to the compensation that they are so rightly due. Saint-Aubin, who now works inserting rubber rings inside twist-off caps, shyly makes a last sad request. "If you could ask your readers, I don't have a television and I'd really like to have one." (Montreal Mirror, 23/11/2000)

Paul Saint-Aubin's lobotomy scars can be seen on this 2004 CBC-TV news programme.
According to CBC=TV, about 350 of the Duplessis orphans were given lobotomies.

It's been done before...

Scotland recently legislated to put DBS (deep brain stimulation) in the same category as psychosurgery, making it a treatment that can only be given with a person's consent. England and Wales have done nothing, although experiments in the treatment of depression and OCD (obsessive compulsive disorder) are starting at the University of Bristol and Queen Elizabeth's Hospital, Welwyn Garden City respectively. In the absence of specific legislation DBS could be carried out on people without their consent or even a "second opinion" from a Mental Health Act Commission psychiatrist.

The treatment must therefore fall within the scope of section 63, for which neither consent nor a second opinion is required. Even though we doubt that any doctor would, in practice, implant electrodes in a detained patient without that patient's consent, this would seem to make such action theorectically legal, if perhaps particularly vulnerable to challenge under human rights law" (Mental Health Act Commission Tenth Biennial Report 2003).

The Mental Health Act Commission may consider the use of DBS without consent unlikely, but it has been done before.

In a 1980 article Robert G Heath of Tulane University in New Orleans and co-authors described the case of an anorexic patient who was opposed to the operation: "Initially, she refused to wear the pacemaker, and restraints were required to keep it operating. During the past year, however, she has showed gradual change. Compulsive rituals have been significantly reduced, and she states she now wants to wear the pacemaker because it makes her feel pleasant and relaxed." (R G Heath, R C Llewellyn and A M Rouchell,The cerebellar pacemaker for intractable behavioural disorders and epilepsy: follow-up report, Biological Psychiatry vol 15, no 2, 243-256) However, she still had to be tube-fed and was described by the authors as only "minimally improved".
Read the article here

And more about Robert Heath's experiments here.

Naomi Ginsberg

Allen Ginsberg's mother Naomi underwent a lobotomy in New York's Pilgrim State Hospital in 1947. Allen signed the papers. Naomi remained incarcerated, dying nine years later in New Jersey's Greystone State Hospital.
Naomi was the subject of one of Allen's best known poems, "Kaddish for Naomi Ginsberg 1894-1956".

And who is going to hold 50,000 clickers?

The November/December 2005 issue of Mother Jones contained an article by Lauren Slater about Deep Brain Stimulation (DBS) entitled "Who holds the clicker?" The title was taken from the following exchange at a meeting of the President's Council on Bioethics

DR. COSGROVE: It's a little computer that's telemetry, via telemetry, the same way you do cardiac pump pacemakers, the same technology.
And the neurologist or the psychiatrist, as we do for patients with Parkinson's disease, you can select which contacts, the current, the pulse duration, the frequency, and you do that all through the little hand held device that is superimposed over the pulse generator.
PROF. SANDEL: Who holds the clicker? Like where is that, in the doctor's office?
DR. COSGROVE: The doctor has that, yeah, yeah.
The patient can turn the device on or off with a magnet that they just pass over the device. So they only have the ability to turn it on or off. The physician is the one who has the ability to program.

The Guardian recently published an article about DBS, written by the paper's science correspondent Alok Jha, which, in its uncritical enthusiasm for the procedure, was reminiscent of early media coverage of psychosurgery. This topic was covered by Gretchen Diefenbach and co-authors in their analysis "Portrayal of Lobotomy in the Popular Press: 1935-1960" (Journal of the History of Neuroscience1999 Apr;8(1):60-9). They noted that: "in most cases mention of negative side effects was either absent or cursory." In the Guardian article there is no mention at all of any risks or side effects to brain surgery. Just as the early articles on psychosurgery stressed the precision of the operations ("the psychosurgeon… cuts at exactly the right angle in exactly the right plane") so too does the Guardian article ("Brain scans are used to pinpoint which parts of the brain are acting incorrectly"). It may be possible with modern scanning techniques to accurately locate structures inside the brain, but can we be sure they are acting incorrectly? Do we even know what correct is?

The Guardian article claims that an "estimated 50,000 people in the UK who suffer from depression but cannot be helped by drugs or electroconvulsive therapy" are potential candidates for DBS. But it doesn't say how they arrived at that estimate. If these people haven't been helped by ECT, then they must be taken from the ranks of ECT survivors and there are probably some 200,000 of those in the UK. So 50,000 who hadn't been helped (and were prepared to continue with evermore invasive treatment) would represent quite a high failure rate for ECT.

The true purpose of the article is revealed in the following passage:

Identifying suitable volunteers for the trial will be crucial. "It can either be people referring themselves or health professionals referring them," said Dr Malizia. "They must have good medical information from the past and they must be anchored to a local clinical service that will carry on looking after them."

But if there are really 50,000 candidates for DBS in the UK there should be over 300 in the Bristol area. So why do Andrea Malizia and his colleagues need the help of the Guardian to recruit eight patients?

Although the Burden Neurological Institute wasn't mentioned in the article, Andrea Malizia and David Nutt are part of the Bristol Neuroscience Group which includes the BNI, and Nik Patel is a neurosurgeon at the Frenchay Hospital, where the BNI is based. It is a shame that Alok Jha didn't even glance into the bizarre history of brain experiments at the BNI (coming to this blog soon!).

In response Sophie Corlett (the acting chief executive of MIND) urged caution - "Regrettably, miracle cures invariably aren't" and pointed out "If the NHS cannot currently fund comparatively cheap treatments such as therapy, how are we to expect that 50,000 people will be able to benefit from an expensive, invasive operation?"
She also mentions something Alok Jha ignored - the ethical problems associated with DBS:

And who's to say that deep brain stimulation is the solution for these people? A narrow medical model of depression, a complex problem, fails to do justice to human psychology and the human condition. We hope that this research leads to positive results, but we also hope no one will ever suggest that using "hair-thin electrodes" to apply electricity "into the core of the brain" will be a substitute for a cohesive and holistic approach to mental wellbeing.