Personal Accounts: Reflections on Adherence to a Medications Regimen
Ever since 1984, when I was 33, I've been plagued by bipolar I disorder, dissociative disorder, and posttraumatic stress disorder. The first is genetic, the second came about through my father's odd pastime of hypnotizing me, and the third was the result of his sexual abuse of me. In 1997 iatrogenic lithium toxicity resulted in kidney failure, which led to hypoxia, and because of an error in rehydration tempo, a brain injury as well as diabetes insipidus. So much for background.
From 1984 to 1986 I was hospitalized involuntarily many more times than I can remember. My two long involuntary stays occurred while I was touring Israel on an immigrant visa. I also had one voluntary stay when I was temporarily living with family back in the United States. After all of that, I stabilized, and I was never again hospitalized until a mixed state occurred in January 2000. This and all subsequent hospitalizations have been voluntary.
In December 2003, February 2004, and May 2005, I was hospitalized in either manic or mixed states, depending on who was making the diagnosis. Persons such as my psychiatrist, who saw my post-2000 history as being mixed, were probably thinking of my overwhelming fear whenever I am even a little hypomanic; I am terrified of getting into a manic state and from there, becoming psychotic. The December 2003 and the February 2004 hospitalizations followed unsuccessful attempts at employment.
In the year 2000 I had a psychiatrist whom I've since replaced. Having been on neuroleptics since 1984, I was antsy, and I wanted to have a drug holiday. I persuaded my psychiatrist in December of that year to leave me solely on Depakote. However, I began to have suicidal ideation, even though, as a pious Jew, I would never actually attempt suicide. (It is a rarified form of anguish to be unable to carry out the longing for death.) There was the complication that I had a separate psychotherapist, and for some reason that was more insane than I have ever been, the psychotherapist telephoned the psychiatrist and told him that I was just seeking attention in saying that I was suicidal, and the psychiatrist believed this. I was so (justifiably) angry when I found out about this at the end of December that I switched psychiatrists. My psychiatrist ever since is a person with whom I have enjoyed a cordial relationship.
It was December 2000 when I stopped taking the neuroleptics. My new psychiatrist wanted to complete a full assessment before deciding on what treatment to offer me. Two months later, I was floridly psychotic. My new psychiatrist was consulting in another state at the time. When I was voluntarily hospitalized, I had given my name as "Mary Smith" at first, as my voices commanded. When I realized that my Medicaid and Medicare benefits would not be accessed with the wrong identity, I gave my true name. The hospital staff remained very concerned and contacted my new psychiatrist. Amazingly, he cut short his work and returned to identify me. I have thanked him and have thanked him since, but he always says that it was just his choice and I need not feel grateful (fat chance!).
Interventions in the event of decompensation
It was no surprise that when I left the hospital I was on neuroleptics again. My psychiatrist and I have tweaked my regimen over the subsequent years. The only effective regimen has been a combination of depot and oral antipsychotic and mood-stabilizing medications and numerous other drugs, such as one to manage my brain injury's symptoms. How inelegant—but it has the singular benefit of working! This is the regimen that we came to after my last hospitalization in May 2005.
Psychiatrists may want to take the opportunity to share this sad tale with their patients or clients who believe that they may be able to get along without neuroleptics. However, after a trial of mood stabilizers alone, if there is decompensation, patients should consider it a badge of courage to return to a regimen that includes neuroleptics. Taking only mood stabilizers may seem heroic, but if in the long run patients become more symptomatic, taking responsibility for their treatment trumps all, and this means following the necessary medication regimen.
Nobody adheres to a medication regimen or follows doctors' orders all of the time. Something or another comes up that the patient finds impossible to fit into his or her life. In my case, although I have found succor in my present psychiatrist's promise that I will never become psychotic again, there is an "if" lurking, and that "if" means cooperating with my doctor's orders. I have failed to do so only once. And that was even though, on ever so many occasions, I had told him that I would do "anything" to avoid becoming psychotic again.
In the spring of 2005, which was not a period of seasonal affective disorder for me (in which all of my prior hospitalizations had occurred), my psychiatrist was very worried that I was not taking my oral antipsychotic as prescribed, because of the low drug levels in my serum. I have home health care aides, and I remonstrated to my doctor that the certified nursing assistant put my medications out in a tray and that both my aide and I took great care in identifying and counting my medications as I was taking them. My psychiatrist said, however, that I needed to have a stay in an intermediate care facility such as a group home to ensure that I would take my medications as prescribed. He knew that I was trying to take them but worried that, to quote Palladas, there "is many a slip 'twixt the cup and the lip."
I refused. Because of my brain injury, I am often unable for some time to verbalize a reason for my gut feelings. Thus it was a while before I remembered that under a Section 8 housing voucher (which I have the benefit of), one cannot be away from the residence for more than a month without losing the voucher.
My psychiatrist then said that I should check myself into partial hospitalization. I countered that aides from the agency I use commonly work on daytime shifts of two hours or longer and that I risked losing their service if I were to enter an intensive outpatient program, which runs during aides' assigned shifts. This excuse was feeble, of course—sheer rationalization as I later saw in its glibness. After all, aides often have dropped me off or picked me up from medical appointments.
Thus it is clear that although I had said that I would do anything to avoid becoming psychotic again, there was a loophole in "anything" as broad as former President Bill Clinton's fatuous, "If 'is' means is, … that is one thing."
The result of all of this was that I had a voluntary inpatient stay of four days over a weekend, and I left the hospital as early on Monday morning as was humanly possible to impose upon the staff. There was, however, a benefit. I felt a sense of horror that I might be like my fellow patients—so ill—and I have conducted myself more carefully ever since.
Best practices
Ever since my 1984–1986 debacle of almost continuous florid psychosis, I have always been a voluntary patient. I am motivated to continue a cocktail of medications that will keep me out of the hospital. But what of the involuntary patient, as I was in those early years?
People who are involuntarily admitted to hospitals generally refuse to take medications. In California, there is a hearing to determine whether the patient must take neuroleptic drugs (called a capacity hearing), which is separate from hearings at which the issue is whether the patient can be confined beyond his or her currently required stay (known as certification review hearings).
The crux of the issue about whether to take medications is the attitude that the clinician presents to the patient. Is it that the patient or client must comply with the regimen? This option produces an authority figure and a pawn. Or is it a matter of adherence to taking a set of medications that the patient or client and his or her provider have jointly decided upon? Such a collaborative "I-Thou" relationship is the very essence of the recovery model in psychiatry.
The recovery model postulates that clients can return to a social life and a work life similar to what they had preceding their acute illness. It is a biological, social, and psychological triumvirate endeavor in which clinician and client are equal. Supported employment and housing are as important in this model as supportive or cognitive-behavioral psychotherapy and the use of medications. The goal is to achieve a quality of life beyond an empty "remission," with the patient unable to work or to live successfully in the community.
Now, as psychiatrists you know all of this. But if your patient or client does not see you "walking the walk," you will never help him or her achieve recovery.
When talking with your patient or client, speak about the options of choosing life or choosing death. It is always up to the patient to decide. Both psychosis and major depression are states in which his or her life is at stake. Manic people saunter across busy boulevards as though they are invincible. Depressed people sometimes complete suicide attempts. Any psychotic person risks "suicide by police," where his or her behavior may be interpreted as threatening and provoke a police officer to use lethal force. However, it is never too late for a relationship that is strong enough to make adherence to treatment a "glue" of equality. It is never too late for recovery for a patient or client who chooses to sustain his or her life.
Footnote
Ms. Sanders is coauthoring a book titled Your Spirit Can Heal Your Brain: Recovery From Mental Illness. She can be reached at P.O. Box 642464, San Francisco, CA 94164 (e-mail: [email protected]). Jeffrey L. Geller, M.D., M.P.H., is editor of this column.
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Published online: 1 April 2008
Published in print: April, 2008
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