Living with mental illness is very difficult. Living with someone who is living with mental illness is also very difficult. Watching a loved one suffer from an illness that nobody really seems to understand is the most difficult thing I've had to deal with in my life. From the very first psychotic episode through the most recent hospital stay (over a period of almost three years), very few people - nurses, doctors or other patients - have been able to describe in words the illness that has affected my wife. None have been able to say why it has happened to her, and none have been able to say that she will get better.

The ambiguity around mental illness has made for some interesting debate in society around the ethical treatment of individuals who show symptoms of the disputed disease. On one hand, every human being has certain human rights that have been guaranteed by governing bodies around the world, including the right not to be treated involuntarily. On the other hand, treatment needs to be given to improve the quality of life of persons suffering from a treatable illness, as well as the people who live with that person. When a person does not want to be treated, what response should we take as a society? What options do we have? What options do the people suffering from a supposed mental illness have? Is involuntary treatment really a human rights violation?

Before we can begin to examine what our response should be as a society to those who suffer from mental illness, we need to understand what mental illness is - if it is. It was difficult at first, from my standpoint, to believe that mental illness does not exist in the way that it is defined by many in the medical profession today - as a brain disease.

Textbooks of medicine, with chapters on schizophrenia and mood disorders written by psychiatrists, present major psychoses as proven brain diseases.[1] However, when my wife was first admitted to the psychiatric ward at a local hospital, I requested a test to find out what the problem was. I needed to know why my wife had fallen into a catatonic-like state and why, before that, her behaviour had suddenly changed so dramatically. I needed to understand why she had started talking to voices that only she could hear responses from, and why she no longer seemed to care about eating, sleeping or bathing. I thought that there had to be some biological reason for this. When the psychiatrist told me that there was no test they could do, and that they could not diagnose my wife's illness for at least six months of observing the symptoms, I was confused. If mental illness is a proven brain disease, then there must be a test that can diagnose that it is in fact a specific brain disease. Otherwise, it cannot be proven. The contradiction was evident from that point on.

A panel of experts assembled by the U.S. Congress Office of Technology Assessment in 1992 concluded that many questions remain about the biology of mental disorders. "...Research has yet to identify specific biological causes for any of these disorders . . . Mental disorders are classified on the basis of symptoms because there are as yet no biological markers or laboratory tests for them."[2] This idea has remained in the forefront of discussions within the psychiatric community, with many psychiatrists and medical doctors backing it up as truth. In a 1998 letter of resignation to the American Psychiatric Association, psychiatrist Loren R. Mosher said, " . . . there are no external validating criteria for psychiatric diagnoses. There is neither a blood test nor specific anatomic lesions for any major psychiatric disorder."[3] In his book Prozac Backlash, Joseph Glenmullen, M.D., said, "In medicine, strict criteria exist for calling a condition a disease. In addition to a predictable cluster of symptoms, the cause of the symptoms or some understanding of their physiology must be established." He goes on to state that psychiatry is unique among medical practices in that there is not yet proof of the cause or the physiology for any psychiatric diagnosis.[4]

With strong statements being made within the psychiatric community, it seems as though mental illness is not a disease at all. If the only concrete measures we have of mental illness are the symptoms, and no biological proof of the illness exists, then why is there such a widely held perception in society that mental illness is a treatable disease?

In a published paper written by researcher Richard Gosden, the point is made that diagnosis is limited to medical practitioners "subjectively forming opinions about what patients choose to say about their private thoughts and beliefs and observing how this inner mental activity is manifested outwardly in behaviour." He further suggests that the brain chemistry imbalance hypothesis and its general adoption by the psychiatric community owes more to the rationale it provides for neuroleptic drug treatment than to its founding in scientific evidence.[5] The idea that an association of medical doctors would intentionally treat patients with medication for financial gain while not acknowledging the lack of biological proof of illness is reprehensible. If psychiatrists know that anti-psychotic medication does not effectively treat supposed mental illnesses, but instead serves as a method of settling the patient down and making them conform to societal standards of behaviour, then an enormous violation of human rights is being carried out in hospitals around the world.

"Most if not all psychiatric drugs are neurotoxic, producing a greater or lesser degree of generalized neurological disability. So they do stop disliked behavior and may mentally disable a person enough he can no longer feel angry or unhappy or 'depressed'. But calling this a 'cure' is absurd."[6] The way in which neuroleptic drugs, or anti-psychotics, 'treat' supposed mental patients needs to be examined in greater detail. This needs to be done to bring the debate into focus. These drugs are used to moderate the seemingly irrational behaviour associated with ‘diseases’ such as schizophrenia and manic depression. In fact, more than 90% of hospitalized patients with a diagnosis of schizophrenia are prescribed neuroleptic drugs.[7]

These drugs heavily sedate the patient, by blocking dopamine receptors in the brain. Promoters of the chemical imbalance theory tend to think that if dopamine blockers can moderate the patient's irrational behaviour, then schizophrenia and other such 'diseases' must have at their root the hyperactivity of dopamine in the brain or the production of excess dopamine.[8] It is important to note that this is only an assumption. It is a very risky assumption, in the least, as the consumption of neuroleptics over a prolonged period can lead to many debilitating problems.

Possible side effects to anti-psychotic medication include insomnia, restlessness, anxiety, euphoria, agitation, drowsiness, depression, lethargy, headache, confusion, vertigo, grand mal seizures, and provocation of psychotic symptoms including hallucinations and catatonic-like behaviour states. It is difficult to see from this list of possible side effects how anti-psychotic medication actually can be said to help the patient with the said symptoms of mental illness, since while the medication might dull certain symptoms, it may cause a new set of symptoms. Psychiatrist Peter Breggin says in his book, Toxic Psychiatry, that neuroleptic drugs are a thoroughly inappropriate treatment regime because they are only used to make people more docile and easier to control.[9] They don't actually clear the symptoms, but instead create a long list of new, though possibly milder and seemingly less threatening, symptoms.

In retrospect, the truth of Dr. Breggin's statement is staggering to me. Throughout the lifetime of my wife's treatment, many different medications were used, predominantly anti-psychotics and anti-depressants. She suffered from nearly every one of the side effects listed above. At times, it was impossible to tell if the behaviour she was exhibiting was a symptom of the illness or a side effect of the medication. While the medication seemed to help with the hallucinations and psychotic breaks, they increased her anxiety level so high that she could not sit down for a meal or to watch television. She would often pace in circles for hours at a time, causing her feet to bleed on at least one occasion. She could not concentrate long enough to read a single paragraph of writing. At other times she would sleep for eighteen to twenty hours and, when she was awake, was lethargic and depressed. It was not until we had been through five psychiatrists and a dozen different medications that we found a psychiatrist who was less trusting of the medication and decided to reduce the dosage that my wife was on, and to begin psychotherapy. Immediately we noticed an improvement in many areas. The lethargy disappeared and her anxiety level was reduced, though still existent. Through it all, we are still not sure what happened and why, but we are sure of one thing - the many psychiatrists who believe in medication as the only means of dealing with mental illnesses effectively are playing a dangerous game with the lives of their patients.

According to Thomas Szasz, A.B., M.D., D.Sc. (Hon.), L.H.D. (Hon.), and Professor of Psychiatry Emeritus at the State University of New York Upstate Medical University in Syracuse, New York, "It's a matter of determining who has control over one's body - the State or the individual. "It is enough to acknowledge who defines what and controls whom. For example, in the typical case of bodily illness, say myocardial infarction, the subject identifies himself as suffering from an illness and so does his physician; whereas in the typical case of mental illness, say schizophrenia, the psychiatrist identifies the subject as ill but the subject does not identify himself as ill."[10] Therein lies the difficulty in treating those who are said to have a mental illness. If one is suffering from symptoms but is not convinced that it is mental illness, or even if one does believe there is a possibility of mental illness, if one does not want to be treated for it, who has the power to decide otherwise? Should anyone have that power over another person?

While there appears to be some truth to this statement by Szasz, it is not always the case that there is a hidden agenda of domination or control in seeking involuntary treatment. During my wife's psychotic episodes, if that is in fact what they were, I in no way wanted to dominate or control the situations. I did not feel good about going against her wishes. What I wanted, as her husband and friend, was to ensure that she would be okay. The first time she had an episode, it took all of my courage to call 911 and have the medical "experts" intervene, against her will. Being in that situation caused me to question what I knew and had known for my entire life as reality. It made me question my part in the situation, and it made me question God. But at no time did I enjoy having the power to control her actions with respect to this mysterious illness. Over the years there were times when I was questioned by the ambulance attendants and the police as to the nature of her illness and why I needed them to take her to the hospital. If they determined that she wasn't a threat to herself or anyone else, they would not take her. I once had to work very hard to convince the authorities that by not eating or drinking or sleeping over a period of a few days, she was threatening her own health. They finally gave in and took her in to the hospital, but with reluctance.

Why the reluctance? Because forcibly taking a person anywhere is a violation of that person’s human rights, specifically the right to liberty, as stated in article seven of the United Nations International Covenant on Civil and Political Rights (ICCPR), unless that person has committed a crime. However, article 18-3 of that same document says that the "Freedom to manifest one's religion or beliefs may be subject only to such limitations as are prescribed by law and are necessary to protect public safety, order, health, or morals or the fundamental rights and freedoms of others."[11] In this case, My wife had the right to decide not to eat or drink or sleep, as these choices were based on a belief she had at the time, and the manifestation of that belief did not make it necessary to protect public safety, order, health or morals, or the fundamental rights and freedoms of others. However, Ontario's Mental Health Act says that by threatening harm to yourself or another person, one is committing a criminal act. If there is no deliberate threat made the authorities cannot intervene, but since there was the implied threat of harm to herself by not eating, drinking or sleeping for a number of days, she was arrested under the Mental Health Act.

Looking at that particular situation in hindsight, I do not know if the correct decision was made. At the time I was thinking with my heart, and as a concerned husband and a friend. At the time it was the only decision I could have made. I exercised power over another individual and made a decision for her that she would not have made for herself. I don't know if I was ethically correct in doing so. She even verbalized her need to not go to the hospital. I used coercion to get her to the hospital so she could receive treatment for her symptoms. For all I know, she could have decided to start eating at any time. For all I know, she did not need treatment, just time. There were other aspects of her behaviour at the time that I also did not understand, such as the catatonic-like state that she entered into and came out of every so often. But at no time during that particular occasion did she verbalize the desire to kill herself, or to harm anyone else.

When my wife began going to psychotherapy sessions, she began to discuss how she had lost her voice in our relationship during the years of her illness. It was the psychotherapy sessions that helped her to not only realize this, but to begin to gain that voice back. Psychotherapy helped her to name her needs and then ask to have them met. If that task were to be left to education alone, those who have learned it but go through a traumatic event may need to re-learn it. The importance of psychotherapy to patients who have had mental breaks is like physiotherapy is to stroke victims.

There were times when my wife did threaten suicide. At those times I also admitted her, against her will, to the psychiatric ward at the local hospital. There was no question in my mind when I made those decisions that I was doing the right thing at the time. Again I was thinking with my heart. She had experienced what I think, and doctors are certain, were hallucinations. She was told by 'God' in those times that she had to die right away, and if she didn't she would be condemned to hell. It was a terrible thing for her to live through. She described the entire scene to me in detail while in the hospital. She truly believed she was going to hell because she had failed to kill herself when she had the opportunity. Still, I imposed my values, as did the psychiatrists, and told her that she had to live and she had to take medication and that it would soon all go away.

The doctors and social workers said I did the right thing. They said her mental illness made her incompetent to make decisions about her own well being. While this may be true using my value system and the value system of our North American society in general, what I really did was impose my value system on someone who had decided to believe in an alternate reality. The injustice of that act is apparent in most situations, but in the emotion of the moment when someone has decided that they must take their own life, it is not so. It seems to be less about suicide and more about selfishness. I wanted her to live though she did not want to. It is about me not respecting her wishes and her value system. Though I was told that she was ill, and even before I was told, I assumed that she was ill, I don't know that she was ill. Her hallucination, though not reality for many other people, and myself, was her reality. And I still think I would make the same decision if it were to happen again today.

While it can be pretty clear where value judgments come into play in the involuntary treatment of the supposed mentally ill, hallucinations and delusions are much more difficult to pinpoint. However, in our society, value perspectives often still play a role in determining whether a person is hallucinating or not. Hallucinations and delusions are known as the two classic symptoms of psychosis. Thomas Szasz points out that they are metaphorical symptoms, based on the fact that a physician cannot see them unless they are complained about by a patient or pointed out by someone who knows the patient. Unlike precordial pain, which is a literal symptom of a possible literal disease (coronary artery disease or gall bladder disease or even arthritis, to name a few), hallucinations or delusions are the illness. Since psychosis cannot be scientifically proven, where coronary artery disease can be proven, hallucinations and delusions are the metaphorical psychosis. So, even though the concept of hallucination or delusion is metaphoric, it is interpreted literally in psychiatry. For example, if a lonely, de-institutionalized, former mental patient populated his world with imaginary people who talk to him, we say he is hearing non-existent voices; he is hallucinating and is therefore mentally ill. When Beethoven heard melodious music in his head and translated that music onto paper and played it on the piano, we called it genius, not hallucination.[12] When a middle-aged woman hears a voice in her head telling her to become a minister for Christ, she is either called crazy, by those who either don't believe in God or don't believe that God would speak to that woman, or she is praised and encouraged by members of her church congregation. It seems obvious that some objective discernment is necessary, and that maybe value systems should be set aside or given lesser weight in deciding on something as important as the involuntary treatment of the supposed mentally ill.

So, when a person does not want to be treated what response should we take in society? Through my experience and research I have found that there are likely no correct answers. However, there are good and bad responses, or maybe more correctly, there are positive and negative responses in different situations. What options do we have? Ethically, one can allow another the liberty to make decisions about their health for themselves, whether one agrees with their behaviour or their decisions or not, so long as they do not negatively effect the liberty or health of anyone else. Or, also ethically, one can decide to administer medication to another person, or have another person treated for symptoms that imply that person does not have the control or the competence to make the decision for themselves - against that person's free will. The more correct or positive response seems to depend largely on circumstance, social or religious values or personal discernment of what is best in each individual situation.

On one of the occasions when I admitted my wife involuntarily to the psychiatric ward in our local hospital, she told me I was breaking her will. It was the first time I had actually stopped to think that I might have done the wrong thing. I may have violated her human rights. The decisions I made were the decisions I felt I had to make, not for me, but for the survival of my wife. All I could try to understand about the situation in those moments was what my wife had told me of her experience and what the medical doctor told me of his expertise. What my wife told me was far more terrifying than what the psychiatrist told me, so I chose to side with him. Over time I learned that the medical doctor's expertise was not in communicating, or not even in understanding what my wife was going through, but his expertise was in doling out medication. His expertise was in hoping that the medication would eventually start to work, adjusting dosages to minimize side effects, or adding new medications to counteract other side effects. It was less expertise and more memorization of medications and what they could do to a person alone or in combination with other drugs. Perhaps the expertise was in not knowing anything in particular, but in guessing based on probabilities and the weighing of hundreds of variables.

For those who are suffering from symptoms of a supposed mental illness, their options are limited depending on the degree of their symptoms. If they have good, strong family support they may ask for help. If they don't, they may end up out of work with nowhere to go. They may end up on the street. Wherever they end up, they need people who understand that there is ambiguity in the way they see things. They do not need psychiatrists telling them they are schizophrenic and they do not need to be doped up in a psychiatric ward for six months to get some rest. They need people to explain to them that they are not alone. They need people to really listen for and respond to their needs on different levels. We truly have to listen to the words that they speak without prejudging. We have to first acknowledge and then address the ambiguities that exist in the on-hand research and continue to research unexplored avenues creatively. We must care for these people as individuals and above all, we must respect their human rights.

Notes:

[1] Thomas Szasz, Insanity: The Idea and Its Consequences, John Wiley and Sons, Toronto, 1987, p. 73.

[2] Lawrence Stevens, J.D., Does Mental Illness Exist?, posted on the Internet October 8, 1999 http://www.antipsychiatry.org/EXIST.HTM.

[3] Ibid., "1998 Updates".

[4] Joseph Glenmullen, M.D., Prozac Backlash, Simon & Schuster, New York, 2000, pp. 192 - 196.

[5] Richard Gosden, 'Shrinking the Freedom of Thought: How Involuntary Psychiatric Treatment Violates Basic Human Rights', Monitors: A Journal of Human Rights and Technology, Vol. 1, Number 1, February 1997, http://www.cwrl.utexas.edu/~monitors/1.1/

[6] Stevens, Does Mental Illness Exist?, op. cit., http://www.antipsychiatry.org/EXIST.HTM.

[7] Gosden, 'Shrinking the Freedom of Thought', op. cit., http://www.cwrl.utexas.edu/~monitors/1.1/.

[8] Ibid., http://www.cwrl.utexas.edu/~monitors/1.1/.

[9] Ibid., http://www.cwrl.utexas.edu/~monitors/1.1/.

[10] Szasz, Insanity: The Idea and Its Consequences, op. cit., p. 21.

[11] Gosden, Shrinking the Freedom of Thought, op. cit., http://www.cwrl.utexas.edu/~monitors/1.1/.

[12] Szasz, Insanity: The Idea and Its Consequences, op. cit., pp. 95 - 96.