I wrote this letter a couple of months after my husband took me to the emergency room and I was diagnosed as having a manic episode and admitted. It was my first experience with mania and I didn’t have a psychiatrist; I did not know the doctors who treated me. Although my stay was only one night long, I was unhappy enough with the way I was treated in the hospital to write to the doctors about it.
Dear Dr. X,
[introductory comments not included]
The main reason that I am writing is because I would like to tell you more about what I experienced on the day I was admitted to the hospital. I am telling you this in the hope that you may be able to use this somehow as you treat patients in the future.
I believe that Ms. A, the head nurse of the psychiatric unit, has told you that I was somewhat distressed about what happened to me on that day; in particular I was very upset that I was forced to take medication. I certainly understand that the medication significantly contributed to my recovery and I understand that the medical staff acted in what they thought were my best interests. I do believe, however, that some of my distress could have been avoided and I will attempt to articulate how as I describe my experience.
On that Tuesday I voluntarily went with my husband to the emergency room, accepted the diagnosis that I was mentally ill and agreed to be admitted to the hospital for treatment. While I was in the emergency room I exhibited anxiety that was witnessed by others about being separated from my husband; I had a fear that something might happen to one or other of us if we were separated and also a feeling that I needed him to stay with me to help me to deal with what was going on.
As I was admitted, I relaxed somewhat and began to fall asleep; by the time I got to my room I lay on the bed and did fall asleep for a few minutes. When I woke up (and I had no idea how long I had slept) I was totally disoriented and my husband was gone. I rushed out of the room to go and find him; when I did (he was filling out forms with Mr. B, I believe) I was told to go back to my room and rest. But I would say now that I definitely should not have been alone at this time; I should not have had to look for my husband; and I should have had someone there when I awoke. Ideally I should also have been given an explanation about the unit when I awoke. My awaking experience had a very bad effect on me; having to find my husband significantly increased my anxiety and the lack of information about my situation forced me to conclude that “no one is telling me what to do so I must work out what to do for myself in this situation”. My sleep should have helped me to calm down but the anxiety caused by my disorientation on awakening overrode the effect of the sleep. This was unfortunate, because, as you know, the most important thing for a manic patient to do is to calm down.
This idea “I must work out what to do for myself” was part of my mania and I had been thinking it to some extent already, but it seems very ironic that the first effect of my admission was to reemphasize and strengthen this conviction. But I was not yet to the point that “I cannot trust what others say, especially the medical staff”. Yet I did get to that stage very soon afterwards and as far as I am concerned, it was the treatment I received from the medical staff which which led me to that conclusion. And this is what really concerns me about my treatment; that the way I was treated caused my anxiety level to increase, which in turn made me act even more irrationally, which led to stronger control on the part of the staff, which increased my resistance to them, and so on. The result, from my point of view, was that my basic rights – to have my medication explained when I asked about it, to refuse medication and more fundamentally, to be treated with respect and dignity as a patient who voluntarily admitted themself, were violated. I can understand why patients who have experienced this type of humiliation might go on to refuse medication as soon as they are well again. It must be hard for them to believe that something beneficial was being done to them, considering the lack of respect with which they were treated. I firmly believe that mental patients are entitled to as much dignity and respect as any other patients and that, if anything, they deserve more understanding, because of the nature of their illness.
According to what Ms. A told me, you acknowledged to her that my behavior on Wednesday was very different from the way you were told I was behaving on Tuesday. My behavior was very different and part of the reason for that was the medication I had received. But I had also made some decisions during my time alone in the “quiet room” (this happened within the first minutes after I was left alone, before the medication took effect). I decided in that time that I would accept my circumstances, even though I had become convinced that I was not as ill as I thought the medical staff thought I was. I had become convinced that they thought I was dangerous and likely to harm other patients and that they may keep me in the “quiet” room for days or weeks. I wish someone would have told me that I probably was not going to be in there for long; this would have been very reassuring and helpful to me to know.
My decision to accept my circumstances meant that I would listen to the doctors and cooperate with them and stop trying to argue with them about my mental state. Although I was convinced that they misunderstood my condition, I could also see that their treatment of me a direct result of my outward behavior. I felt like they were reacting to my outward symptoms and I was not being given an opportunity to express to them what was really going on inside. I do think I should have been asked why I grabbed the other patient; then by telling them and their reaction I would have had an opportunity to see whether the staff did think I was dangerous or not.
One thing that helped me not to lose my trust in the staff altogether was that Dr. Y was very kind to me on Tuesday. I felt like she was genuinely trying to help me. Because of this I did not associate the forced medication with her; I assumed that it was the tall male nurse who decided to do that since he was the one who I perceived to be treating me harshly and without respect. In the heightened emotional state of mania, I stood there in front of him, in the realization that I would have to take this medication and that I was not even going to be permitted an explanation of it before I took it, and felt a powerlessness that I hope I never have to endure again; a feeling that I had been misunderstood and that as a consequence I was going to have to take something which for all I knew may cause me serious harm. I had no way of knowing in that moment that I was just being given some short term medication to calm me down and help me sleep. I already had come to have a negative view of this person, based on my limited experience. I understood why he had forcibly removed me to the “quiet” room but I was very upset by my interaction with him earlier about why my husband had to leave at 1 o’ clock (he took charge of answering that question, as I recall). He responded that “It was the rules”. I felt very insulted that I was asking a logical, reasonable question and I was not receiving a reasonable answer. I could not see how having my husband remain in the room could possibly cause them any problems and I had been expecting that he would be able to stay with me all day, so this was a big shock to me. I found out later, from reading the book I was given about the hospital, that there is some discretion about the visitor rules, so I think it would have been more truthful to tell me that the staff thought it best for him to leave at that time. As far as I can see, the time was being used as a convenient way for the medical staff to end my attempts to “explain” that I was not as ill as they thought by removing the other people from the room. But did anyone consider telling me (tactfully) the truth about why he had to leave?
Evidently Dr. Y had told me about the medication; I must have been distracted at the time. But at the time she spoke of it, I did not know I would have to take it, otherwise I certainly would have paid attention to what it was and asked her about any concerns I had.
I asked her the next day why I had been forced to take the medication; at the time I was well aware that the patient rights sheet said that patients were allowed to refuse medication. She responded that in emergency situations the staff can override that right. I cannot believe that I was really in an emergency situation; I was left alone, in the “quiet” room, with two video cameras watching me. What could I have done?
But I also believe that I would have voluntarily taken medication to help me sleep; it was the fear that some powerful mind-altering drug was being administered that led to my resistance. Once it was pointed out to me, I realized that I had had very little sleep in the nights leading up to my admission. I would say that there is no evidence that the drugs helped me except to the extent that they made me sleep more. I consider myself fortunate that the possibility of being pregnant prevented me from being started on long-term lithium until I was able to request that I did not take it for the present. My husband and my psychiatrist are agreed that there is no need for it unless my condition worsens again.
In summary, what I am trying to say is that what I was doing on Wednesday was deliberately setting aside my misgivings about my treatment the day before; I was giving you, the doctors, the “benefit of the doubt”. I wish that I had been encouraged to have a natural trust that you understood my illness (and I was in part, by Dr. Y’s talk with me on Tuesday) rather than having to come to the conclusion that I should listen to you despite the lack of respect with which I had been treated the day before. You were the trained professionals and I was the confused patient, struggling with something completely new to me. So shouldn’t it have been the other way round, that you should have given me the benefit of the doubt by treating me with respect and answering my questions courteously and truthfully? This would have encouraged me to trust you, to listen to you and, I believe, to have taken medication voluntarily. Even if you find this hard to believe, I hope that you can see that my distress would have been less if I had been treated with more kindness.
I am writing this in the hope that my experience may be used to help other patients. So I would ask that you think about what I have written and also pass it on to Dr. Y if you think it is important.
Sincerely,