November 16 2015.
The Sunday Independent published on 15th November an article with the headline “Mentally ill still forced to endure shock treatment”. The article, by Allison Bray, commented on a report by the Mental Health Commission (MHC) published on Thursday 12th November regarding the use of electro-convulsive therapy (ECT) in Ireland. The MHC reported a “worrying” rise in the administration of ECT without consent between 2012 and 2013, from 27 courses of treatment to 46 nationally in a year.
The lurid headline, which will have been written by a sub-editor rather than by the author of the piece, begs to be picked apart. Every word in the headline is problematic.
“[The] Mentally ill”, referring to people with mental illness, is a terrible phrase, as is the word “epileptics” used elsewhere in the article to describe people who have epilepsy. People with mental illness, who form a large proportion of any population, are not “the mentally ill”. Mental illness does not define these people, as epilepsy does not define people, like me, who have a diagnosis of epilepsy. It is not their essence. It is not us and them, as that phrase implies. Language is important.
The word “still” is intended to imply that ECT is some archaic throwback. (“I can’t believe they still do that!”) “Forced” implies a degree of physical coercion that is not there. “Endure” we will come back to – as if the worst a severely depressed person had to endure was an effective treatment. And “shock treatment” is thrown in purely to sensationalise. No one calls it that, except headline writers.
Each of these articles discussed ECT without consent. None of them read as if its author understood the fragility of capacity to consent to treatment. Each article cited the Mental Health Act concepts of “unable” and “unwilling” with respect to consent for ECT without appearing to know the difference. (Section 59(b) of the Mental Health Act, 2001, deals with the administration of ECT to people who are “unwilling” and/or “unable” to consent. Most people who receive ECT under section 59(b) are both unwilling and unable; They can’t consent, and they don’t assent.)
None of the articles read as if the authors had any knowledge of severe depression.
Nowhere in the articles was there a recognition that a person with severe mental illness might lose the capacity to consent to treatment by virtue of the severity of their illness, and so become “unable” to consent to treatment, such as ECT.
There was much discussion of the wish of the MHC and the Government to ban ECT without consent for people who were “unwilling” to consent, but who were not deemed “unable”.
This does not translate, as one relying on these articles for information would think, to a ban on treatment without consent. Consent is not saying yes. Consent and assent are different. A person who loses capacity but still says yes to treatment – unable but willing – still has to receive the treatment under section 59(b).
A ban on “unwilling” means a ban on treatment without consent for people who retain capacity to make decisions about treatment but who refuse ECT. This is an obvious and necessary move.
No one thinks people with capacity to decide who say no to this treatment, or to any other treatment, should have the treatment. Capacity means the ability to make decisions about treatment. Most people who receive treatment for mental illness retain capacity at all times to make their own decisions. The College of Psychiatrists of Ireland stated as long ago as March 2010 that the provision to treat people who are “unwilling” to accept treatment but able to refuse should come out of the Act.
The College also stated that Section 59(b) needed to stay in the legislation. People will still need ECT without consent when “unwilling” comes out – when their illness is severe enough that they lose the capacity to make decisions about their own treatment, and they are “unable” to consent; when other treatments have failed, or their lives are endangered by their depression, and ECT is likely to help.
It is a daily reality that people with mental illness of various kinds – usually severe depression or mania or schizophrenia and related disorders – temporarily lose capacity because of their symptoms.
A person with severe mania admitted after driving at 100 miles an hour thinking himself incapable of coming to or causing harm, who believes he’s in hospital to heal all around him by laying on of hands, and who angrily refuses treatment for mania, does not have capacity to refuse that treatment.
A person with severe psychotic depression who believes it is better for the world if he dies because he is certain that his inherent evil kills children does not have the capacity to refuse treatment for that depression.
Back, with this context, to the headline: “Mentally ill still forced to endure shock treatment”.
ECT is a safe and effective treatment for a number of serious psychiatric conditions. It is not perfect. No treatment is. It has adverse effects, some of which are severe. All treatments do. It is used rarely. The most common use for ECT is in the treatment of severe depression, for which it is the most effective treatment.
That word “endure” is gnawing at me, and it has angered me. Its use diminishes the suffering of people with severe depression of the kind that makes psychiatrists like me gingerly suggest ECT.
No one could write that headline if they knew how low ECT comes on the list – the long, long list – of horrors that people with severe depression endure.
William Styron wrote “The pain of severe depression is quite unimaginable to those who have not suffered it, and it kills in many instances because its anguish can no longer be borne. The prevention of many suicides will continue to be hindered until there is a general awareness of the nature of this pain.”
Styron is a starting point. But we can be more specific.
People with severe depression endure the certain knowledge, every day, all day, that they are worthless. That they are pointless, and that the world would be better off without them.
People with severe depression are often more agitated than they are depressed or sad. They cannot rest. They cannot have peace. “Depression” is often the wrong word; Lewis Wolpert coined “malignant sadness”.
Severe depression is often a painful absence of feeling; it’s a sickening numbness, a hollowness, that brings with it a shocking loneliness.
Severe depression is often anguished hopelessness. Styron, again: “The pain is unrelenting, and what makes the condition intolerable is the foreknowledge that no remedy will come – not in a day, an hour, a month, or a minute. If there is mild relief, one knows that it is only temporary; more pain will follow. It is hopelessness even more than pain that crushes the soul.”
People with severe depression endure psychic pain that people without severe depression can’t understand; that goes almost beyond our capacity for empathy. They may endure the constant, pressing, urgent wish to die. They may wish they had never been born. They sometimes say that they would kill themselves if they weren’t so tired; but they are bone-tired.
They feel guilt that they are alive, guilt that they are sick, guilt that they are a burden, though they’re not. People with severe depression feel guilt that they can’t, as they see it, even kill themselves properly. They may feel depressive guilt to such an extent that they believe they deserve their torment.
People with severe psychotic depression endure auditory hallucinations telling them they are scum, they are hated, they should die; these voices scream at them.
They endure delusions that you wouldn’t believe if you hadn’t heard them first hand. That they are evil and sinful; that they have caused wars, that they are responsible for murders, that they are physically hurting other people just by being in their physical presence. I would bet anything that there is a depressed person in Dublin right now who believes he is responsible for the Paris attacks. It’s impossible but he knows.
People with severe psychotic depression believe these things, that are physically impossible, with utter conviction. They know these things, that are wrong and terrifying, as surely as they know their own names.
People with severe depression endure the belief that their organs are rotten, or that they have already died (the “nihilistic delusion”). Sometimes, when they believe these things, they stop eating and drinking. What’s the point of eating if your insides are rotten, or if you’re already dead? Then, they endure starvation and kidney failure and they can easily die, untreated.
There is no talk therapy that works here. People who are severely depressed are too tired and hopeless and agitated and they are incapable of adequately listening and concentrating.
There is sometimes no drug that works, or works quickly enough. And supportive care alone is not enough.
So sometimes other options are needed.
I’ve sat with these people and I have reached out to them and failed to reach them; they’re too far away, across a gap that depression has rendered unbridgeable. I’ve sat with their families in solemn rooms and joined them in tough decisions, and it’s gone either way; not every time has my opinion that ECT is needed held sway.
I’ve hardly ever reached for ECT. But I have used it. And it has worked. And it has been transformative. Looking back I wonder if I’ve used it too little; if I’ve let suffering go on too long, unnecessarily, because of a stigma imposed on ECT by commentators who are not in the room when those decisions are made, but who I still hear in my head.
It belittles the suffering of people with severe depression and their families when broadsheet newspapers publish articles about mental illness that don’t understand their subject. When they publish ill-informed, poorly thought through and provocatively headlined pieces about depression, and the treatments that we reach for when nothing else has worked.
It belittles the suffering of these people when authors casually throw in the words “inhumane” and “barbaric”, as the author of the Sunday Independent piece did. (“Some [psychiatrists] have denounced it as inhumane and barbaric” – in fact, I would challenge the author to find one consultant psychiatrist who would use these words.)
Let’s say we took these commentators seriously, and looked at what happens when we refuse to consider treatment with ECT for a person who lacked the capacity to consent.
So a person with severe depression has suffered for weeks or months. Nothing is working. Every hour of every day for that person is torment. They are starting to refuse food, and slowly shutting down.
They are so sick that they believe they are evil and they deserve their unremitting anguish. I have a treatment that works – an unpopular, ‘barbaric’, effective treatment – available to me.
I have a choice here.
Because my patient, delusionally, says no, because he can’t envision his recovery, and because I’ve listened to the authors of articles in the national newspapers decrying ECT without consent, I let the anguish go on. It goes on. I don’t know, then, if this person lives – the hypotheticals have stopped now, and in real life I’m treating this patient.
In real life, I recognise that people who are so severely depressed as to be utterly lacking in hope and delusional need help with decisions that they can’t make, and need steps taken that they can’t consent to, to bring them back for themselves and their families.
As long as I am practicing medicine, I will believe that barbarism is permitting suffering that you could have ended or death that you could have prevented. I want to be on the side of William Styron and to prevent those deaths that ensue because people fail to grasp the calamitous seriousness of severe depression. I want to be on the side of life, of patients and their families; I want to understand.