Tuesday, November 29, 2011

Non Compliance to Medication

Dear Friends, greetings.

I wanted to write about the biggest problem that I had in my journey through mental health problems: it was resistance to medication.  For many years I thought that the medication would hurt me and that I didn't need it, even though I had repeated episodes every time I went off the medication.  I couldn't see that every time I took the medication I got better.  Instead I resisted it again and again.  Finally, after many relapses, I woke up.  A light went on and I saw that if I took the medication that I could have a normal life back again.  It was a wonderful day.  My doctor was amazed.  She said that the resistance is part of the illness.  I knew that other patients were still refusing medication and not getting better.  Mental illness is perhaps the only illness where this resistance to treatment is actually part of the description of the illness.

How I got through the resistance, while others still struggle with it, I do not entirely know.  I prayed to Yogi Bhajan, my spiritual teacher and I know that it helped. My opening to medication was almost like a spiritual awakening.  Since I've been back on medication I've been able to go back to school, get married and return to my faith-based Ashram community in Los Angeles.  I have a new beginning in life.

I was correct however that the medication does have some problems for me. When I take it, it lowers my dopamine and serotonin and makes me mildly depressed.  For that, I take an antidepressant.  Still the benefits of the medication outweigh the problems because it gave me my life back

I thought to write this story for you so that you would know this unique feature of mental illness, that it usually includes resistance to treatment.  There are many mentally ill in the street because of this and the more the public understands, the more compassion can be had for these people and for the mentally ill generally.

Blessings, Hari Simran Kaur Khalsa

~   ~   ~

Resistance is a part of any human growth experience. We say 'no' to what we don't understand, we say 'no' to protect what feels safe, or we say 'no' to protect our sense of independence from the therapist. Therapists know this and are taught to respond to resistance by accepting the resistance.

In the case of mental illnesses, non compliance to medication is a common problem. The Masters thesis by Scott Caton, submitted in 2007, describes the problem as follows. In the case of schizophrenia, non compliance to medication increases the risks of symptoms, including suicidal ideation, hospitalization, homelessness and violence. But very little is known about the causes for this non compliance and there are few studies which, combined, lead to lack of conclusive evidence. So far "family psychoeducational approaches, and daily professional supervision of medication intake appear to be the most effective." Almost a third of patients with a schizophrenia diagnosis are unaware of their illness or deny being ill. The World Health Organization considers the lack of insights into one's illness as a hallmark of schizophrenia. And those who fall in this category are less likely to be medication-compliant.

Testimonials by patients can be very helpful in understanding this type of resistance and Hari Simran Kaur's testimonial is relatively unique in this context.

My experience with patients with schizophrenia is that they can be quite smart and they may sometimes state that they are not ill in order to justify not needing medication. If the desire not to take medication is strong enough, their experience of their symptoms may not be that important to them and they may conclude that they are not ill. This may not be denial as it may come from a point of view of what matters to them at the time.

Understanding the world of a patient may lead to healing insights which are easily overlooked otherwise. The question must be asked: What is the patient's point of view? For instance, I had a client who suffers from paranoia. He had problems trusting people who treated him, therapists, doctors, and naturopaths. One needs to be careful to build trust with any patient and especially with someone with paranoia. So, I inquired about his childhood and it became obvious that he was physically and emotionally abused. One of the ways he shows his paranoia is by thinking in terms of conspiracies or by his fear that he is responsible for someone's death if he is close to them when they die. When a doctor or an alternative health practitioner treats him without giving him explanations about the treatment used because they don't want to influence the effect of this treatment, he immediately assumes the worst about their intentions, and, as a result, he does not trust them, nor does he trust their treatment. He becomes non compliant to the medication or herbal remedy prescribed. There are ways these practitioners could approach him without triggering his paranoia if only they tried to understand him first.

Beers (read my previous post) experienced schizophrenia and argued that his logic was never impaired. He explained that what was impaired was his ability to judge whether something was good for him or not, and sometimes his ability to judge someone's intentions toward him. But his response was always logical if you understood the premise behind it. This is important, because that means one can have a logical conversation with someone with a schizophrenia diagnosis, but one needs to understand the assumptions such a patient is making.

How does one truly understand where a patient is coming from? If my patient is non compliant, I would assume that I still haven't understood her. I still need to ask questions until I see the world she live in from her perspective. The key is to have as few assumptions about patients as possible, no judgments, and approach them as if we were completely new to their experience. Which we are! We may have years of experience with people with mental illnesses and yet I recommend we approach new patients by trying to understand their experience as if no one else experienced the illness in the same way they do. I also recommend not assuming that the symptoms are negative. Depression, paranoia, schizophrenia can all be expressions of spaces a patient feels drawn to that are better than anything else they know. And finally, I recommend not to assume that the patients understand why they make the choices they make, for instance,  why they do not take their medication. I see it as my job to help patients understand themselves so they can engage in their own healing process.

Depression can be a way to express to those close to us how powerless we feel, paranoia may be a way to be vigilant so as to prevent the reoccurrence of previous trauma, and schizophrenia may be a way to avoid a scary reality. If we assume the symptoms are dysfunctions and treat them with medication, we may miss what the patient is trying to express, we may take them away from their place of refuge, and this may be one of the mechanisms that leads to medication non compliance. On the other hand, if we don't use medication, it may be very hard to have a coherent conversation with some of these patients. So we may need both approaches in tandem.

In relation to the intake of medication, a conversation to help a patient understand herself may go something like this:

"Last night you were supposed to take your medication, but you chose not to, right?"

"That's right."

"At the time, you were supposed to take it, what was going on through your mind?"

"I did not want to take it."

"OK. Was there a part of you that wanted to take it and another part of you that did not?"

"Yes, you're right!"

"Tell me about the part that did not want to take the medication. What was going on for you?"

By having a conversation like this with a patient, a therapist makes little assumptions and no judgment. This helps in getting into the world of a patient. And, by doing this, the patient feels that the therapist cares and trust starts being restored for the patient. If you notice, in this example, the patient shows ambivalence about taking the medication. there is an inner battle about it. This is very important information. As a result, it is no longer just the therapist wanting her to take the medication. The battle is within the patient and that is where it has a chance to be resolved. This approach preserves her autonomy and keeps her engaged and trusting in the process.

The conversation I quoted above may not appear very different from what most therapists might do and yet I am surprised that my clients are not asked such simple questions.

I do not want to convey the impression that I know in advance the questions I'll ask a client and why they are important. The analysis of a conversation and how it was important comes afterwards. What guides me with the questions I ask is understanding a client not just intellectually, but in the core of my being. If I feel I have too much information pulling me in different directions, I tell my client I need some time to integrate everything by meditating briefly on what we have discussed so far. My clients have always welcomed this process when I use it. I close my eyes and feel all my sensations. I let peace come within me while I become very present to all that has been shared, taking all the details, conflicting or not, into account. When peace is restored in my body, I usually understand much better what is going on and where to go next.

Other therapists have chosen the approach of entering the reality of their patients as well. One of the reasons is it is the easiest way to foster a trusting relationship, but another, a side effect perhaps, is that once a therapist enters the reality of a patient, he can be engaged in his own healing and the therapist can guide the process toward healing as a team with the patient. Check out the article by Yuliya Cohen (http://wholistichealingresearch.com/102cohen) which I also added to the pages of references (see above tabs) for easy referral.

I am aware that entering the reality of a patient is not the only method that works with schizophrenia. I know of a case where constantly reframing a person experiencing a delusion (seeing a lion instead of a little dog) by letting that person know that the reality is just that it is a little dog and the person who did the reframing also added at the end of each reframing words: "... and I am your friend Sam." This process took 4 hours. The reframer never lost patience and conveyed the feeling of support and friendliness throughout. The person in delusion came out of this delusion in which he had been trapped for several days if not weeks as the result of an inner conflict while being trained in the army in the Middle East.

In summary, I offer that medication non compliance may come for reasons worth exploring with the patient and that understanding these reasons may lead to understand key elements crucial to his healing. The method I suggest to explore such reasons is to enter the world of the client. Such an approach fosters a trusting relationship, engages the patient in his healing and releases previous resistances that may have seemed insurmountable.

Luc (Awtar Singh) Watelet

Friday, November 25, 2011

The Need for Compassion in Mental Health

By Luc (Awtar Singh) Watelet

The story of Clifford Beers is an uncommon testimonial of someone who suffered suicidal ideation, delusions, hallucinations, paranoia, periods of elation and depression (i.e., schizophrenia and bipolar disorder). He recovered and told his story in a book called: A Mind That Found Itself, published in 1908. He went on to start the Mental Hygiene movement in 1909. This movement became international. 

While talking with Hari Simran Kaur about her story, we both thought it might be important to remember Beers' requests for improvement in the care of the mentally ill. The key message from Beers was that a person suffering from a mental illness may easily misunderstand and misinterpret, but still feels very deeply and compassion is the best way to help such a person overcome paranoia and delusions so they can trust the world again.  

Beers describes his internal battle: 
The biographical part of my autobiography might be called the history of a mental civil war, which I fought single-handed on a battlefield  that lay within the compass of my skull. An Army of Unreason, composed of the cunning and treacherous thoughts of an unfair foe, attacked my bewildered consciousness with cruel persistency, and would have destroyed me, had not a triumphant Reason finally interposed a superior strategy that saved me from my unnatural self. (p.1)

Beers describes the process of his recovery: 

Few have ever had a better opportunity than I to test the affection of their relatives and friends. That mine did their duty and did it willingly is naturally a constant source of satisfaction to me. Indeed, I believe that this unbroken record of devotion is one of the factors which eventually made it possible for me to take up again my duties in the social and business world, with a comfortable feeling of continuity. (p. 52)    
For over two years I considered all letters forgeries.Yet the day came when I convinced myself of their genuineness and the genuineness of the love of those who sent them. Perhaps persons who have relatives among the more than a quarter of a million patients in institutions in this country to-day will find some comfort in this fact.To be on the safe and humane side, let every relative and friend of persons so afflicted remember the Golden Rule, which has never been suspended with respect to the insane. Go to see them, treat them sanely, write to them, keep them informed about the home circle; let not your devotion flag, nor accept any repulse. (p. 53)

Beers felt some caretakers to be against him and then constructed, in his mind, conspiracy stories about them. But he also felt the kindness of others. He was very reluctant to follow guidance from those he suspected to be a part of a conspiracy against him, but was very willing to follow guidance from those who showed kindness to him.

Within a month of his first discharge from mental hospitals, Beers first thought of studying art, but his business instincts prevailed. He describes how he was able to "secure a position of trust."

During the negotiations which led to my employment, I was in no suppliant mood. If anything I was quite the reverse; and as I have since learned, I imposed terms with an assurance so sublime that any less degree of audacity might have put an end to the negotiations then and there. But the man with whom I was dealing was not only broad-minded, he was sagacious. He recognized immediately such an ability to take care of my own interests as argue an ability to protect those of his firm. But this alone would not have induced the average business man to employ me under the circumstances. It was the common-sense and rational attitude of my employer toward mental illness which determined the issue. This view, which is, indeed, exceptional today, will one day (within a few generations, I believe) be too commonplace to deserve special mention. (p. 171)   

We are still waiting for Beers' prediction to come true. Before concluding, Beers has these words:

"After all," said a psychiatrist who had devoted a long life to work among the insane, both as an assistant physician and later as a superintendent at various private and public hospitals, "what the insane most need is a friend!" (p. 204)

"These words spoken to me, came with a certain startling freshness." (p.204)

Beers ends with a quote from the bible about the life of Jesus, leaving no uncertainty as to his wish that love be the central part of our care of the mentally ill.

My Story

By Hari Simran Kaur Khalsa

I'm writing to share some of my personal experiences with the mental health system in this country. I became sick about eight years ago and had my first experience in a hospital ever at that time. I was very surprised  that on the psychiatric unit there was no therapist, but it turns out that this is standard practice for psychiatric units everywhere. The problem was that there was no one to really talk with. I did work with the social worker and I spoke with the nurses, but there was no one to help me understand what I was going through and how to help my community and family understand me. It came as a surprise that psychiatrists on these psychiatric units and in regular practice no longer do therapy but only prescribe medications.  As a result I also did not do therapy with my psychiatrist while at the unit.  

One of the far reaching results of this was that I unwittingly accepted the idea that I had to move away from my community and stay separate as a result of my illness. This was the guidance of my closest friend at that time, with whom I was living and who was giving me the most guidance. I really longed to go back to my community and home there. However, I was very disturbed and shocked by the advent of my own illness and so was my community. I needed guidance and encouragement to go back and speak with friends and administrators there to explain what had happened. I did not understand myself what had happened and I very much needed a therapist on the psychiatric unit to help me get perspective and help make arrangements to  go back home and stand up for myself and stay rooted there. This did not happen. Instead, my illness began a long process of disengagement from everything that I had known and ended with my being alone in new surroundings and with an illness I did not understand.

When I got out of the psychiatric unit I could not afford a therapist.  Later when I finally did get a therapist, it was hard for her to understand why I wanted to go back to my community.  It seemed to her that they had not supported me during my illness, so why would I want to go back.  I found that reaction in many therapists over the years.  However, I do understand that it is hard for behavioral health providers to understand whether the patient is better with their family and community or in a new environment.  It is generally agreed that patients need family and community support.     

What I am proposing here is that it is important to have a therapist on modern psychiatric units where the therapeutic process often begins for a patient.  I am also proposing that the role of that therapist could be pivotal in helping the patient stay integrated in her or his community and family, by helping to understand the process of the illness and recovery and stop the disengagement process that often takes place around the onset of the illness. Mental illnesses have a tendency to create separation rather than integration, by their nature. This was my over arching experience when I first became a mental health patient. Since, I became stable on medication and started to become aware of my situation, I realized that a lot of pain could have been avoided with proper understanding and support.