Guest post: Andy Espersen on the treatment of mental illness

Regular readers of this blog may recognise the name Andy Espersen. Not only is Andy an occasional commenter, but he was mentioned in a Dominion Post column of mine in February 2018, which was reproduced on this site. Now in his 80s, Andy (who emigrated to New Zealand from Denmark) spent 40 years working in psychiatric institutions and has campaigned tirelessly on the issue of care for people with a mental illness - more specifically, schizophrenics. A central thrust of his argument is that many schizophrenic people now living in the community would be much better off in institutional care - an option denied them by the Mental Health Act of 1992.  It's an issue I have some knowledge of, having had a brother-in-law with schizophrenia.

Last year, a parliamentary select committee "took note of" a petition presented by Andy seeking a royal commission into harm suffered by schizophrenia sufferers as a result of the closure of mental hospitals. The committee's essentially sympathetic report on his petition is reproduced HERE. But Andy is dissatisfied with the outcome of the government inquiry into mental health, whose report the committee repeatedly cites, and wants to keep the debate going. I'm very happy to provide him with this platform. 

Been and gone is the million-dollar, much-vaunted Inquiry into Mental Health and Addiction, chaired by Ron Paterson.  The Government has accepted most of its  recommendations, including its main recommendation, namely the repeal and replacement of the 1992 Mental Health Act.

It is odd that this has not engendered any  reaction from interested parties such as district health boards and the Mental Health Foundation. I remember very well the furore and debate when this Act came into being.  It replaced all previous mental health legislation which was based on our first such legislation (of 1846).  In the report's chapter 11 (p.191)  we read, “New Zealand needs a national level discussion to reconsider  beliefs, evidence and attitudes about mental health and risk (sic)”. So let me start the ball rolling   -  noticing that until now we have had only a deafening silence. The Inquiry report brazenly declares the 1992 Act  “out of date”  -  but it most certainly does not back this statement up with adequate reasons. Quite the opposite: the report displays total incomprehension as to why we need mental health legislation in the first place  -  namely, to be legally able to contain  and protect totally vulnerable, demented people.  Let me explain :

If you Google the question, “Why do we need mental health legislation?”, you get answers such as, “The legislation sets out special rights to protect you if you are being assessed or treated for mental illness without your consent, and your rights if you are under compulsory assessment or treatment”. In other words, the Act is there to protect you against excessive intrusion into your personal autonomy by authorities. But the reason for our original 1846 legislation was to protect you as an individual from the terrible effects of the illness  -  and to protect you from being held responsible for criminal actions committed by you while demented. 

There is a world of difference between these two paradigms. One puts the responsibility for applying the legislation in a particular case on a psychiatrist who must assess the degree and quality of the patient's volition to decide whether to apply the law or not.  The other makes it mandatory to apply the law, simply because the person is demented – and traditionally, this was never determined by psychiatrists (these being a very recent invention).  This was decided in a court of law  -  often by a jury.

The 1992 Act had  two consequences which represented a radical change in the philosophy governing the  treatment of mental illness that had prevailed since the European enlightenment.  Firstly, it removed a mentally ill person's  legal right to asylum for life.   Since 1846 a mentally ill person had a legal right to be admitted (or before the voluntary inpatient legislation in 1960, "committed"), to a mental hospital  - simply because of being mentally ill.  Secondly, it removed society's  right and duty to contain an obviously mentally ill person and place him (or her) in a mental hospital. This proviso, of course, was both to protect psychotic persons against their own actions, of which they are no longer in control,  and to protect innocent citizens from being harmed by them. My meaning of  “mentally ill”  extends only to people suffering from  either functional or organic dementias   -  mainly the senile dementias, the schizophrenias and the manic-depressive or other endogenous depressions and psychoses.

Our first legislation on these matters was a direct effect of the European Enlightenment  - that amazing wave of rational,  intellectual and humanistic understanding of our human condition which swept over Europe from the mid-18^th century. Immanuel Kant wrote that it consists of humankind's emergence from its self-incurred immaturity, and its submission to the dogmas and formulae of religion or political authority.  And  its cornerstone was freedom of thought and speech.  Lunacy had always  been just a fact of human life, never to be questioned.  But Dorothea Dix, a young  Sunday School teacher in  early 19^th century Massachusetts,  was not afraid to question the  way the sufferers  of this terrible mental condition were treated.  She laboured all her life to persuade states in the US and  other governments to establish asylums for these unfortunate people.

And so it happened in New Zealand  :  a benign, charitable government  in 1846 formulated and enacted the Lunatics Ordinance. To begin with, the sufferers  just became special inmates in prisons and hospitals; but the building of our huge asylums soon began,  and from then on schizophrenic sufferers no longer presented any great problem in our society.  

As always, the great majority of patients still lived  with their families. It is not generally known today that  “in a typical New Zealand mental hospital, 86% of those admitted in 1955, not suffering from congenital mental deficiency and under the age of 60, were discharged within 12 months of admission;  one third of these were discharged within one month of admission” (K. R. Stallworthy,1959).  And please note, this was 1955 – before the advent of powerful tranquillising medication which greatly shortened the average length of time spent in the hospitals by patients.

But the asylums were always there for the many who had no family, who were too afflicted by their illness to be able to leave, who had a recurrent, acute  psychotic episode (a common complication in probably half the chronic cases), those who needed respite care and those who were dangerous to themselves or others.

An interesting  debate went on in asylums in the latter part of the 19^th century between the adherents of medical and  moral treatment of the insane. One faction, the medical profession, wanted to treat and cure schizophrenic people,  though they could not boast of much treatment other than blood-letting, whipping or forced labour. Then there was the other faction: lay people who from their experiences of living with the insane knew the futility of any treatment.  Very soon our medical doctors were persuaded of the superiority of the moral way of treating the patients  -  and in the 20^th century they greatly improved on the moral treatment through such innovations as the villa system and occupational therapy.

Science, reason, humanism, progress  -  all were the bases of the Enlightenment. And the fruits of the Enlightenment were  the institutions of our modern world which we now take for granted: democratic governments, schools, hospitals, the  fourth estate (with its self-imposed code of ethics) and so forth.   But alas, over the past half-century all these institutions have come under increasing attack. People with small minds, incapable of seeing the wood for trees, are disdainful of their governments, critical of sound academic knowledge in any sphere (though quite ignorant themselves) and rejecting  reason and humanism as the only yardstick to measure things by.   Here in New Zealand  we now see people attacking the Treaty of Waitangi, or the understanding of it as it was always accepted.  In its time this was regarded as a crowning example of enlightened European civilisation. The amazing benefits from the enlightened institutions that  the colonisers brought with them to share with indigenous Maori count for nothing in the twisted minds of these backward-looking, self-proclaimed reformers.

Nowhere has this counter-Enlightenment been more evident than in the case of mental asylums.  From the 1960s onwards people slowly again began to “submit to dogmas and formulae” (as Kant astutely put it).  Instead of soberly observing disabled human individuals and intelligently accepting the evidence before their very eyes with realism and charity, it became the norm to follow the indoctrination preached by well-meaning ideologues.  It was felt very deeply by many that it was wrong for so many schizophrenic people to be institutionalised in mental asylums. The fact that mental hospitals were never prisons and that doctors tried their level best to discharge as many patients as possible  back to their families was not understood.  Likewise, after the enactment of the 1992 Act, the fact that the schizophrenic population as a whole became much worse off than when we had residential hospitals was deliberately ignored.

New mental health legislation  will now be written.  It is my fervent hope that this legislation will again oblige our society to grant lifelong protection and hospice care to all sufferers of functional and organic  dementias.  Yes, I agree that we must review the 1992 Act; but the Inquiry report's vague, wholly unrealistic reasons for doing so should not be heeded.

Footnote: Andy invites and welcomes comment.

A peaceful death after a tormented life

(First published in the Nelson Mail and Manawatu Standard, January 15.)

We buried my brother-in-law three weeks before Christmas. While it was painful, there was also a sense of release for both him and his family.

Andrew was schizophrenic. For many years he was a committed patient in Porirua Hospital. Later, when it became fashionable for mentally ill people to be released into the community, he was moved into a flat that he shared with another former patient.

My wife, Andrew’s older sister, managed eventually to get him into a pleasant hostel on the Kapiti Coast, close to their elderly mother and other family members, where his meals were provided and resident staff kept an eye on him. It was there that he spent his last years.

He had a measure of independence and his essential physical needs were met, but he passed most of the time shut in his room.

Did he derive any pleasure from living? To be honest, it was impossible to see how he could. From a normal perspective, his life was devoid of purpose or enjoyment.

He did seem to like being with his family, at least as far as we could discern. Andrew never showed much emotion, still less talked about his feelings.

Conversation with him, a struggle at the best of times, became impossible towards the end. Though only 58, he seemed to have succumbed to a form of dementia which I assume was the result of the drugs he had been on for decades.

He was permanently confused, asking the same questions over and over again and forgetting things he had been told only moments before.

He would rarely sit down but would restlessly pace up and down, constantly looking at his watch. He gave the impression that no matter where he was, he was anxious to be somewhere else – as if by removing himself, he could escape whatever was tormenting him. This struck me as a particularly cruel form of torture.

In his last months he developed a strange spending compulsion, splurging money on incongruous items like electric toothbrushes and cellphones for which he had no use. Clearing his room, we even found a lavish edition of the complete works of the Bronte sisters, which Andrew would never have read.

For all that, his dementia (if that’s indeed what it was) gave him a degree of peace after decades of crippling anxiety. It seemed to take over the mental space previously inhabited by fears that he was never able to articulate.

Where there were previously demons, there was now just an apparently benign haze. I regarded it as a blessing.

I had known Andrew (as everyone knew him, although his original Polish name was Andrzej) since he was at secondary school. Even then he was almost painfully shy and withdrawn.

He certainly didn’t lack intelligence. He was keen on astronomy and after leaving school, began studying for a qualification in electrical engineering.

He was in his early 20s when his mental condition suddenly deteriorated. He retreated to his bedroom. He stopped eating and washing. He wouldn’t talk.

He withdrew into a world where no one could reach him. His hair grew long and lank and his nails were uncut. He looked like one of those painfully emaciated figures you see in photos taken after Nazi concentration camps were liberated.

Electro-convulsive therapy (ECT) saved his life. I have absolutely no doubt about that. It was administered after the family doctor intervened at our request. 

Prior to our giving consent for ECT, I had consulted my own GP. ECT was a highly controversial treatment (it still is), but my doctor was emphatic. “Get it done,” he said. “No one knows exactly why it works, but it can have dramatic results.”

And so it did. It brought Andrew back from the brink of death. He never again became the same person we had known before his illness set in, but for many years afterwards he was able to enjoy some quality of life, at least intermittently.

There are lots of Andrews in the world. I’ve never encountered anyone else quite like him, but I know from our circle of friends that many families have direct experience of mental illness or intellectual disability.

Get any bunch of New Zealanders together and you’ll find, if they are prepared to open up, that there are people in their families with schizophrenia, manic-depressive illness, autism, ADHD, eating disorders or any of the other mental afflictions that restrict and diminish people’s lives.

Such illnesses can be source of great anguish, especially when the condition is such that the family can’t provide the necessary care. In those cases we have to rely on the state, and it doesn’t always respond as we might like.

Andrew’s condition was managed rather than treated – a consequence, presumably, of the mental health system being overloaded and reduced to dispensing medication.

Family members battled for years on his behalf but found the health bureaucracy frustratingly sluggish and unresponsive. Appropriate sympathetic noises were usually made, but information was difficult to obtain and it was hard to pin people down. Accountability seems more talked about than practised. 

Admittedly, Andrew wouldn’t have been the easiest patient to deal with, because he was so uncommunicative; but it didn’t help that the psychiatrists nominally treating him changed constantly and none really had a chance to get to know him.

His death leaves us with a few nagging questions. Could we have done more for him? That’s a tough one. There were times when we believed a repeat treatment of ECT would have jolted him back to some semblance of normality, but once he was no longer a committed patient that required his personal consent, which he wouldn’t give.

We wondered whether he was influenced more by what he had heard than what he had experienced himself. Horror stories about ECT being used as punishment in mental hospitals during the 1960s and 70s had made it almost unmentionable, despite its proven efficacy when properly administered. One Flew Over the Cuckoo’s Nest has a lot to answer for.

Could we have given him a better life if we had looked after him ourselves? Perhaps, but we would need to have been saints. Even the most supportive family often has to admit it can’t cope with the stress of caring for a member who is mentally ill.

Why was a gentle soul like Andrew cursed with such a cruel illness? What perverse lottery selected him to suffer, and for what reason? Those are questions I won’t even attempt to answer.

Andrew died after choking on a piece of cake that had been baked in honour of a fellow resident’s birthday. He went into cardiac arrest and his brain was deprived of oxygen for about 40 minutes.

The family decided to turn off his life support system several days later. The doctors at Wellington Hospital told us that even if he had been able to continue breathing on his own, he would have been severely brain damaged.

Did we make the right decision? I believe so.  In his comatose state, Andrew looked at peace for the first time in decades. He may have died clinically on November 28, but to all intents and purposes he had stopped living a long time ago.