Editorial Note: This is a brief synopsis of Dear Luise by Dorrit Cato Christensen – a story of power and powerlessness, and a most extraordinary book. Extraordinary because of the horror it outlines. Extraordinary because of Dorrit’s restraint when writing about her daughter. Do things go as badly wrong as this often – yes. Are we doing anything to stop disasters like this – not obviously.
From an early age my daughter Luise displayed signs which would now almost certainly be recognized as Asperger’s Syndrome – at the light end of the spectrum. Many different psychologists, neurologists and psychiatrists struggled to arrive at a diagnosis. Initially it was thought she suffered from ‘hidden epilepsy’ and she was given heavy anti-epilepsy mediation. She was only eleven years old. This was to be the beginning of Luise’s mental deterioration and my struggle with the psychiatric system into which she later sank.
This system, we were to discover, is one which pays no heed to the voice of the patient or the family. We experienced an overrigid, Kafkaesque bureaucracy which seems incapable of seeing patients as individuals with strengths as well as symptoms.
Following her inital diagnosis, Luise was heavily medicated with anti-epilepsy drugs for four years. This treatment had a disastrous impact on Luise’s life and health. The doses she was given were suitable for a stout adult not an 11 year old child.
In June 1988 Luise was admitted to hospital following her third suicide attempt since she had started taking anti-epileptics. She was admitted to the same ward she had been on four years earlier where her treatment began. However a according to a new specialist Luise didn’t suffer from ‘hidden epilepsy’ – and never had.
The doctor’s order was that Luise’s medication should be halted, she should be treated as a normal girl and start living a normal life. But this wasn’t going to be straight forward. Luise hadn’t been in mainstream schooling since her original diagnosis. In addition, for five years Luise had been constantly told how very ‘abnormal’ she was, and that the medication could make her ‘normal’. She had been in and out of a vast number of institutions and had to talk to doctors and specialists again and again. The consultants all described carefully what she was supposed to be capable of doing but couldn’t. For example, she couldn’t hop on one foot which was blamed on the hidden epilepsy. And worst of all, when the medication she had been taking for years was suddenly stopped, Luise suffered from severe after-effects and there was nobody in the health care system who would help us with that.
All the social services could offer was that Luise saw a psychiatrist for her problems. I feared that a psychiatrist would put Luise back to the Hell she just had come out of – overmedication with anti-psychotic or anti-epileptic medicine, hospitalization and institutionalization. So now everything for Luise and me was about how to avoid any ‘medical help’.
In August 1992, Luise was admitted for a ‘psychiatric evaluation’ – just observation not medication. She had at that time been drug free for about four years. She was an adult and the evaluation was meant to measure, among other things, where Luise needed help to get on with her life educational wise.
Everything went wrong. From day one she was given high doses of neuroleptics. A week after Luise started on this medication she suffered from neuroleptic malignant syndrome (NMS), a medical emergency which leads to death if not promptly treated. After this terrifying episode Luise became extremely strange, not at all like the lovely daughter I used to know. I’ve later been told that this reaction is normal, but nobody told me that at the time. On the contrary, I was told that Luise had a terrible aggravation of her disease. She was severely psychotic and had to be treated with antipsychotics so that this condition would not turn into a permanent state.
I was scared to death and wasn’t able to think straight. Luise was in a completely different world. This became the start of our second nightmare that went on for years.
Considering Luise’s reaction to the neuroleptics it might have been reasonable to assume that the specialists would rethink the treatment. But no! Luise was given still more medication and different psychotropics (polypharmacy). Luise kept showing more and more signs of not being able to tolerate the treatment. No consideration was given to her pleadings regarding the negative effects the drugs had on her or to my contention that Luise was acutely sensitive to psychiatric medication. She began to hallucinate, she slept, slowed up, gained 35 Kilos, had Parkinsonisms, strange movements of the face (tardive dyskinesia) and chronic vomiting which led to an ulcer and often terrible pain. Her menstruation stopped. And on top of all these side effects, she sometimes lost consciousness.
I was deeply scared by this and told her psychiatrist about this phenomenon. He replied that Luise had just fainted to attract attention to herself and that this was part of her disease. I had to give up. I had this strange feeling that the psychiatrist saw me as a very irritating and disturbing person, who just obstructed his work. So he did everything to get rid of my intervention. He did not see me as the worried mother who was extremely distressed to see how her daughter had deteriorated. He didn’t see me as a person who actually knew my daughter and as such could be a resource in his treatment of his patient.
I watched powerlessly as my beloved daughter gradually succumbed to the devastating effects of the cocktail of drugs in ever increasing doses, the lengthy stays in psychiatric institutions, the regular use of physical restraint and the use of the law to enforce this regime of ‘care’. As her state got worse she became filled with anxiety and experienced psychotic symptoms, which inevitably led to a diagnosis of schizophrenia and more drugs.
In 2003, Luise spent a long time in a special psychiatric hospital. She was transferred so the experts could find the right treatment for her. In the chart notes on admission it was written that Luise should be stabilized and have her medication adjusted. After a stay of a year and a half, her medication was reduced a lot, and she certainly was a lot better. The diagnoses of mental retardation given by her daily psychiatrist many years ago was taken away. This change in treatment obviously didn’t please Luise’s daily psychiatrist. Maybe that was the reason why he wrote in Luise’s charts that during her time in hospital she had become increasingly psychotic, which was so very wrong.
But that note could give him a plausible excuse for increasing her medication again. When something is written down in the hospital records it becomes THE TRUTH. There was no account of side effects in Luise’s extensive records and the psychiatrists never accepted that Luise had any, even though she repeatedly told him about her severe problems. He just took her words for waffle and catalogued her complaints as an aggravation of her disease.
Luise tried almost every anti-psychotic on the market, often at the same time. The regime and doses were constantly changed and she didn’t get any better. In fact, she became increasingly worse. Why didn’t her psychiatrist ever reconsider his treatment approach? Luise deteriorated physically and got more and more psychotic as time passed. Her medication was increased to heights which corresponded to three or four times the highest recommended doses. She was hallucinating as never before. She was now at times running around trying to avoid the snakes and fictitious blood-soaked creatures coming out of the walls.
Why did the specialists never realize that something was completely wrong? WHY? It should, in my opinion, have occurred to them that Luise’s diagnosis may have been wrong. And if so, the medication would be wrong too.
It turned out that Luise’s diagnosis was wrong. When a psychiatrist finally started to listen to me, and more importantly started reading the different records that pointed in that direction, he declared that Luise suffered from Asperger’s syndrome and she should stop the psychotropics. Unfortunately by then it was too late.
Luise died in hospital in 2005, hours after she was given her first depot injection despite the strenuous objections of both Luise and me. We were convinced it would lead to her death and we had good reasons for fearing depot injection. We argued that nobody ever knew how much medication Luise could tolerate as she had been vomiting all the years. However, Luise foretold that the medication would kill her. She told me several times that on her tombstone should stand ‘the medication killed me’.
I keep asking myself ‘Why did it happen? Why couldn’t I avoid this happening?’ But I can only see one answer. I did all I could. But Luise and I didn’t get a chance to speak up about our experiences, and nobody was ever interested in Luise’s story. The chart notes in Luise’s long file did not show that anybody had ever read it. There was absolutely no continuity in her treatment, her notes just showed a long collection of single consultations where nobody ever wondered why Luise, after 10 years of heavy medication, didn’t get better.
So why do things often go so completely wrong in a very well functioning modern health care system based on evidence from advanced scientific research? Although Luise lived in Denmark and her story concerns the Danish psychiatric system, I know for sure that the same could happen, and does happen, in most other Western countries. Why is the treatment culture so extremely inhumane? Why do we accept the increase in forced treatment and coercion? It seems to me that it has become state sanctioned in the name of care and cure.
One of the reasons could be because the practice of psychiatry is based solely on the biomedical model which sees all symptoms as arising from some fault in the brain for which the only cure is medication – the same way as insulin is the cure for diabetes. When a mental health problem is considered to originate from a ‘chemical problem’ in the brain, the specialists can easily justify why it is important first to put that ‘chemical imbalance’ right. This approach consequently leads to the treatment of a ‘diagnosis’ rather than the human being. The patient all too easily becomes a dehumanised object and the doctor the all knowing expert.
As the foreword to ‘Dying for a Cure’ by Rebekah Beddoe says:
‘Drugs are available on prescription only, and when we go for treatment we are linked inescapably to the prescriber. In the ordinary course of events for most of us, going to the doctor is like going to the bank manager or the head teacher – we feel a few inches tall, absurdly grateful for the smallest signs of favour, and often completely forget what we had meant to say. This situation is compounded if things begin to go wrong after some treatment starts, when the doctor may quickly seem like our only way out. We become ever more dependent on him, and grateful.
We are unaware we are heading into a medical version of Stockholm syndrome – the puzzling state where hostages are often close to being in love with those who have taken them hostage. If the difficulties we develop are caused by the treatment and the doctor doesn’t recognise that what he has done or is doing is wrong for us, then we become almost hostages to fate.
The ultimate bind is that our questions will be put in the weighing scales against the scientific answers and found wanting. What self respecting doctor in an evidence based medicine era will want to be seen to go against the evidence? Can all the guidelines be wrong? There is no-one on our side who is likely to point out that the so-called scientific evidence has been carefully constructed by pharmaceutical companies, who suppress trials that don’t suit their interests, and who selectively publish data from trials so that even a trial that has shown a drug fails to work and can trigger suicide can be transformed into a trial that shows unparalleled evidence of efficacy……’
Bad treatment stories like Luise’s damage people’s trust in the healthcare service. But as more people go public with treatment stories that have gone wrong, and even more importantly, specialists like Peter Gøtzsche come forward to speak about why psychiatric treatment, in their opinion, is not as successful as it was predicted to be in the fifties when all the new psychotropics came on the market, the system will surely be forced to change.