I am sharing my story in support of the CRPD campaign: Absolute Prohibition of Involuntary Commitment and Forced Treatment. This campaign is of utmost importance. Treatment and commitment carried out by force is torture, and must be abolished immediately. For psychiatric ‘help’ to happen by force is a paradox and makes absolutely no sense. It can destroy people’s personality and self-confidence. It can lead, in the long run, to physical and psychological disability – and unfortunately, as I know only too well, it can also result in sudden death.
I have been in very close contact with the Danish psychiatric treatment system. My dear daughter Luise got caught in this ‘helping system’ by mistake, but she didn’t make it out alive. I’m sad to say I later discovered that the way Luise was treated was more the rule than the exception. After writing a book about Luise and the psychiatric system, Dear Luise: A story of power and powerlessness in Denmark’s psychiatric care system, people from all corners of the world contacted me to say that Luise’s story could have been their own or their loved one’s story.
As a leader of the Danish association Dead in Psychiatric Care, I am constantly in contact with desperate people who have been committed or who have experienced some kind of forced treatment. They all talk about the tremendous amount of psychotropics they are forced to take. They feel powerless when they complain about horrible side effects and are told in response that the disease has developed and the dose has to be increased. I hear about the smug certainty of some mental health professionals, both doctors and caregivers, and the concomitant dehumanization of their patients through indifference, harassment, coercion and the use of force. Through my experience with my dear Luise, I saw this cold and dangerous treatment world.
Luise died in 2005 when her body and mind could not tolerate the inhumane treatment anymore. After her death, I got access to the hospital records. Reading Luise’s 600-page chart was a wretched experience. It presents an impersonal diagnosis, with signs of coercion, both direct and indirect, permeating the stack of chart notes. Luise wanted me to help her, but the psychiatrists didn’t want to hear my opinion. They believed that they knew better. So I watched powerlessly as Luise deteriorated both physically and psychologically. I witnessed arrogance and dishonesty, repeated misdiagnoses, professional collusion, missing official records, and falsified hospital charts.
Luise started down this path in 1992 at the age of 18. She was supposed to have a psychiatric examination without medication, however, she was heavily medicated from the very minute she set foot in the hospital. After eight days she was close to dying from medication poisoning. That was in August, 1992. In October of 1992, she was still deeply marked by the poisoning. I have no doubt that she suffered brain damage from this. Instead of treating this injury, the psychiatrists wanted to give her more medication.
Luise said no. She argued that the psychotropics had made her very ill, which was true. The psychiatrists interpreted her arguments as a sign of her illness. Shortly after that, the mandated medication began – administered by a syringe – along with the periodic use of belt restraints.
She fought for two months against the terrible drugs. The staff always won this battle, of course. They used manpower, the belt, and the syringe.
At a certain point, Luise gave up fighting. She was broken. My heart bleeds when I read the chart from November 11, 1992. Two and a half months after she first contacted the psychiatric ward for help, her chart reads, “Today the patient offers no physical resistance but is anxious about being medicated and holds hands (the psychiatrists), and afterward, she is somewhat tearful.”
After reading the chart notes, I realize that coercion, both overt and covert, plays a much greater role in treatment than I had ever imagined.
Initially, Luise fought back, which resulted in long-term coercive measures. I can see that eventually just the threat of forcible measures was enough to make Luise give in. It’s the same story I hear from many of the people who contact me. At a certain point, everybody gives up on fighting back.
July 14th, 2005, around four p.m., was the last time Luise experienced this act of cruelty. She was involuntarily committed to a closed psychiatric ward. She had a psychotropic injected. That was on top of the four other antipsychotics she was already on. On the 15th, during the night, she was walking around as usual (akathisia). A bump was heard. At 5 a.m. Luise was declared dead. The doctor’s attempt at resuscitation was in vain. My Luise was gone forever.
The hospital chart, written not many hours before she died: “The patient was persuaded today to take prolonged-release medicine.” Then a few words about the dose and about how she was feeling well and could be moved to an open ward the next day.
Luise did not want me visiting her, that afternoon of July 14. This was unusual, so I called the ward and was told that she was doing fine and she just did not want to see me. I asked if there had been a change in her medication ― I dreaded the injection the doctor had talked about, which I said would be Luise’s death. The woman on the telephone answered that, for the best of Luise, they had decided to inform me about any medication changes only once a week, so I could find out about this the following Thursday. That’s when I really got scared. Just a few words in the chart about such an important decision as giving a new drug by way of depot injection.
Medical law requires that a patient’s chart must record what information the patient has received about a new product, and what the patient has articulated about it. Nothing was noted in her chart. No informed consent. Luise would have done anything to avoid the syringe. So the sentence “The patient was persuaded today to take prolonged-release medicine” is ominous. I’m sure she fought against getting this injection, as she had earlier been about to die from injection with psychotropics.
The autopsy also revealed marks around her body, which the coroner could not explain. I have no doubt that these marks stem from the staff holding Luise down by force when she fought against getting the drug by syringe ― the injection she died from, eight to twelve hours later.
Mental health problems are not a deadly disease. Yet many people, far too many people, still die in psychiatric care. They die because they are treated with far too high doses of psychotropics, often given against their will and by force. Luise’s tragedy is far from unique in Denmark ― or indeed any other ‘advanced’ industrialized country.
After Luise’s death, I sent a complaint to the National Agency for Patient Rights and Complaints, and to The Patient Insurance Association. My complaint’s headline was “Death from drug poisoning.” I named the four different drugs she had been on, which all together was a huge cocktail.
According to these agencies, Luise received the highest standard of specialist treatment. They wrote:
The antipsychotic medication treatment has complied with the best professional standards. That the outcome has not been satisfactory is due to the nature of the condition and the circumstances that the profession’s knowledge and treatment options are limited.
As stated, I believe that the risk inherent in the medication treatment must be weighed against the sufferings Luise H.C. would have undergone without treatment.
It is incomprehensible that Luise’s treatment was judged up to standard, when in fact they administered psychoactive pharmaceuticals at three times the highest recommended dose. There was no informed consent of this polypharmacy, and nothing written in the hospital records about her treatment in the last days of Luise’s life.
According to the UN Convention, everybody should be equal under the law. So why is this equality not carried out in practice? And why is nobody held responsible when the law is violated? Will we accept a society where far too many people die from an illness that is not deadly? Can we accept a society where forced treatment is often the cause of severe disability?
My answer is NO. Please, STOP forced treatment. Why on earth are psychiatrists so keen on keeping up such dangerous and degrading treatment? I want to tell them: Please get down from your ivory tower. Down to the real world, with real people, and stop saying that this kind of treatment is “for the best of the patient.”