Long-Term Care of an Individual With Schizophrenia: Pharmacologic, Psychological, and Social Factors

Schizophrenia is a complex neuropsychiatric disorder that has many effects on an individual’s ability to lead a meaningful and satisfying life. Progress in psychopharmacology has provided us with an array of compounds that assist in reducing many of the symptoms of the disease. However, even with optimal pharmacologic treatment, many individuals with schizophrenia are impaired in their ability to achieve occupationally and to establish the long-term intimate human relationships that provide meaning and context to their lives. Helping affected individuals and their families to deal with the diminished expectations that are often forced on them by the disease is also an important treatment issue. I try to illustrate the issues involved in the long-term management of schizophrenia in the case of R, with whom I have worked for over 10 years. R participated actively in the preparation of this case history.

PAST HISTORY

No one in R’s family was known to have had a psychotic illness. His mother received outpatient treatment for a “situational depression,” while his father had mild eccentricities in demeanor and communication pattern.

Although R was born prematurely and developed neonatal jaundice, his childhood years were unremarkable. In adolescence, he played football, ran in track events, and was outgoing and popular. He began college as a premedical student.

R recalls that his first psychotic episode and hospitalization, which occurred when he was 19, began with sad mood, insomnia, confusion, visual illusions, hallucinations, and “mild” delusions, the content of which he could not recall. The hospital record states that R was admitted for “intense anxiety, sadness, and difficulty with thoughts.” At admission, he complained of insomnia, thought blocking, thought insertion, and thought withdrawal. He felt that he had been poisoned by the marijuana and alcohol that he had consumed. His mood was sad and anxious and his affect somewhat blunted. He was hospitalized for 5 weeks and treated with perphenazine.

After discharge, R returned to college, discontinuing the perphenazine treatment. He remained well over the next 3 years and returned home after graduation, working part-time. He then took an entry-level administrative position. The job was demanding, and R fell in love with a co-worker, who rejected his advances. The first symptom of the second psychotic episode was the feeling that other people could experience directly the thoughts in his mind. This soon developed into the conviction that everyone in the city knew exactly what he was thinking. He also began to “receive” thoughts that seemed to enter directly into his mind, that were quite distinct from his own thoughts, and were “thought-like” and not “voice-like” in quality. R found that he became able to carry on two-way conversations by “telepathy.” R recalls becoming so busy communicating with people through telepathy that he did not respond to people around him. R also experienced delusions of reference and recalls passing a stadium full of people and being sure they were all watching him. When the crowd burst into applause, R knew they were applauding him.

At this time, R also became preoccupied with religious themes, spending hours reading the Bible, sometimes becoming convinced that he was a great religious leader. Immediately before his second hospitalization, he stood in one posture in the backyard of his parents’ house for a long time, believing he was communicating with others by telepathy. In discussing these symptoms years later, R noted that they occurred with great veracity and that at the time it was “impossible for me to believe that these experiences were not true.”

The records from the second hospitalization note that for 2 weeks before admission, R developed staring episodes, withdrawn behavior, inattention to work-related tasks, and irritability. He made repeated inappropriate advances to women in the administrative program, persisting despite discouragement. At admission, he had “agitation, emotional withdrawal, blunted affect, unusual behavior, cognitive disorganization, and auditory and visual hallucinations.” During this 5 week hospitalization, he had blunted and inappropriate affect, posturing with staring spells, and auditory hallucinations.

R was initially treated with trifluoperazine, and the delusions and hallucinations resolved rapidly. Because the trifluoperazine produced blurred vision, several other antipsychotic medications were tried. Eventually, thiothixene at 5 mg/day was decided on.

After discharge, R remained unemployed for several months and then, at the age of 24, registered in a 2-year master’s degree program in business administration. He describes his illness as quiescent and his academic performance as good during this period, while he was taking 5 mg/day of thiothixene. Because of side effects, he would intermittently reduce the dose to 3 or 4 mg daily and would often then experience symptoms—particularly of “thought transfer.”

During the second year, R worked intensely on his master’s thesis, and he developed a romantic relationship with a woman in the program. As the program ended, R began to decompensate in the context of 1) reduction in his dose of thiothixene, 2) breakup of his social group as people left to take jobs, 3) the departure of his girlfriend to a distant city, 4) increased smoking and drinking, and 5) participation in a diet study during which he lost 20 pounds.

R realized that he was getting sick again, but he did not know how to halt the relapse. He was taken to the hospital emergency room, yelling that he wanted to be the hospital CEO. He recalls a period just before he went to the hospital during which he was immobile for some period of time. The telepathic feelings were again pronounced. He had feelings that he could communicate through thought patterns and was able both to receive thoughts from people outside and to communicate back to them directly through his thoughts. R recalls a bewildering array of delusions during the first few days in the psychiatric intensive care unit, including the beliefs that he was moving backward in time, that there was a conspiracy to torture him because he was a Communist insurgent (the lights in the ceiling being part of the torture technique), that he had AIDS, and that, because his father had done something terrible to him when he was a child, R had to harm him in some way. R remembers the first day in the psychiatric intensive care unit as the worst day of his life, that it was “like a living hell.”

The records from this third hospitalization were not highly informative but note that on admission he had agitation, loosening of associations, delusions, and homicidal thoughts. He was treated with thiothixene, 15 mg/day.

In the months after discharge, R completed his thesis, passed his oral examinations, and received his master’s degree in administration. While instructed to continue thiothixene at 15 mg/day, R refused because of side effects. He was, however, willing to take 10 mg, eventually reduced to 7 mg. He was employed in a series of clerical positions over the ensuing 2 years, during which, he recalls, his illness was fairly well controlled with medication.

PRESENTATION

When I first met R, he was 27 and living at home and had recently begun a demanding administrative leadership position. His medications consisted of 7 mg of thiothixene and 2 mg of benztropine per day. At our first meeting, R was alert, well oriented, and well groomed. His speech was organized, goal directed, and without pressure. Although anxious, he related well and had good eye contact and a full affect without euphoria or irritability. He reported persistent insomnia, unformed auditory hallucinations, and recurrent brief episodes of “thought transfer.” These symptoms worsened in response to job stress. R also reported falling in love with a co-worker. R denied symptoms of depression or mania. He reported being in good health and denied current drug use except cigarettes and alcohol in moderation. The results of standard laboratory reports were unremarkable.

When I met with R’s parents, substantial tension was evident. They were angry about his psychotic illness and were understandably puzzled about what had happened to their son. They were strongly encouraging him to continue to work at a level commensurate with his education. While there were several sources of tension between R and his parents, one of the strongest was their concern about his adolescent drug use, which had consisted mostly of modest amounts of cannabis. His parents felt that this drug use had strongly contributed to his psychotic illness. Furthermore, the parents disagreed about whether R should continue to live with them.

During this first family meeting, I stated that I was concerned that R was in the early stage of relapse, which might progress quickly toward a full psychotic decompensation if nothing was done. I recommended two courses of action. First, I suggested increasing R’s level of thiothixene. There was, I argued, substantial clinical experience and some research evidence that increasing antipsychotic medication in the presence of prodromal psychotic symptoms could forestall a full relapse.

Second, reviewing with them the prior association in R’s history between stress and psychotic episodes, I raised the issue of whether R was well enough to assume the responsibilities of his current job. While R was by training and intellect capable of holding this position, I was concerned that he was not psychiatrically well enough to deal with the associated stresses. I suggested an extended medical leave and, if this was not possible, resignation on health grounds. His parents were visibly angry at this suggestion and asked whether I wanted to make R an invalid. Wasn’t it my job, they argued, to help him live up to his potential? The meeting ended without resolution of this issue.

R’s clinical state was slightly improved the next week with 10 mg/day of thiothixene. However, he continued to experience “soft” psychotic symptoms, which clearly worsened with job stress. His parents told me that they did not agree with my recommendation about R’s employment and that they felt he could “stick it out.” We discussed R’s adolescent drug use. I told the family that, in my judgment, R’s prior illicit drug use had nothing to do with his psychotic illness. I also told them that R’s presentation and history suggested that he probably had schizophrenia but that some features of his history suggested the possibility of affective illness. I reviewed for R and his parents my approach toward medication management of chronic psychotic illness, which was based on two principles: 1) keeping the dose of antipsychotics at the lowest effective level, which may reduce long-term risk for tardive dyskinesia, and 2) flexible dosing, so that patients can have control over their own medication level, being able to self-titrate within predetermined limits. I used the model of a diabetic who can take best care of himself by adjusting his insulin dose as a function of diet, stress, and exercise levels. I also stated that there was some evidence that lithium carbonate could be usefully added to antipsychotic medication for individuals with schizophrenia or with a mixture of schizophrenic and affective symptoms and wondered whether a trial of lithium would be indicated.

A few days later, I received a telephone call from the woman with whom R had become romantically involved. R’s behavior was, she said, “completely out of line,” and if I could not get him to stop, she would call the police. He was constantly harassing her, calling her at all hours by phone, visiting her house, and leaving messages pushed under her door and placed on her windshield. She said that, although she knew he was mentally ill, she was scared. I said that I would immediately meet with R and try to get him to stop this behavior. She agreed that if there was no escalation, she would wait a week before calling the police.

I called R for an emergency meeting. He had no insight into how his behavior was affecting this woman and insisted that he was just being romantic. I told him that she certainly did not see it that way and that he had to stop this behavior immediately to avoid police involvement. The soft psychotic symptoms had increased over the last week, and we agreed to a further increase in thiothixene to 12 mg/day. I told him that I was quite concerned with his state of mental health and again suggested that he take a leave of absence. He said that his parents would not support that, but he did agree to stop having contact with the woman in question. I ordered baseline tests of thyroid and renal function in anticipation of the beginning of lithium therapy.

At our next meeting, R told me that he had been fired. His increasingly disorganized behavior had become evident to his employer. He had stopped harassing his co-worker and had had no further contact with her. However, his parents felt that he should continue to support himself. At their urging, he was job hunting again. We agreed to a trial of lithium carbonate, and R began taking 900 mg/day of lithium carbonate. I requested another family meeting.

When R returned, he was ebullient. After 2 days of lithium treatment, the “thought transfer” experiences had stopped. “You cannot imagine how distracting it is to feel that the thoughts of thousands of people, some from cities far away, are being routed into your mind.”

In the subsequent family meeting, I stated more forcefully my belief that R was not now ready to work at the high-level administrative jobs for which he was trained. We discussed three options. He could continue to try to obtain jobs commensurate with his intelligence and education, try to get “lower-level” jobs that would be less stressful, or apply for Social Security Disability Insurance benefits and focus on improving his psychiatric condition. I argued strongly against the first option, stating that R did not need additional failures and pointed to his last experience, in which I felt that he had come close to psychotic decompensation. I felt the third option was probably the best and said that I would support his application for disability benefits on the condition that he would participate actively in an available day program or in a planned course of volunteer work. However, R and his parents felt that he should continue to look for work. We also discussed R’s living arrangements. I felt that the emotional atmosphere in the home was not good for R and suggested he get his own apartment, as he would have, in my opinion, no difficulty with the tasks of independent living.

In the next month, R found work in the trust department of a local bank and moved out of his parents’ house. He continued to describe soft psychotic-like ideas, which tended to occur when things became stressful at work. Instead of the “thought transfer” phenomenon, however, he described delusion-like preoccupations about his parents. Things got worse at his bank job, and he decided to resign and seek disability benefits. His parents accepted this decision. Without the job stressors, we were able to reduce his dose of thiothixene to 7 mg/day. He and I agreed that, when feeling stressed he could increase this up to 10 mg/day without consulting me. He reported that the increased medication definitely helped him cope with bad days. At a lithium dose of 900 mg/day, R had no side effects and had blood levels ranging from 0.4 to 0.6 meq/liter.

COURSE OF TREATMENT

Over the next 9 years, R and I usually met monthly, for a 30–45-minute session. He has continued to receive disability benefits and received special housing through a county program. R has never demonstrated symptoms of tardive dyskinesia. He has had a series of outside activities, beginning with several years’ attendance at a local day program. Unfortunately, R found this program to be oriented toward “sicker” patients and of limited relevance for him. He enjoyed the social contact but felt uncomfortable with the widespread illicit drug use of some of the clients. While he returned to this facility at times, his activities shifted to volunteer jobs at a nearby nursing home and the local Red Cross. In addition, he participated in the Master’s Swimming Program at the YMCA. Although R has experienced several exacerbations of his psychotic illness, rehospitalization has never been required.

During these early years, I urged R to keep up his mental and physical activity. Several times, he wanted to quit his volunteer work and I had to remind him of our agreement, stressing the importance of keeping up his “people skills.” I encouraged him to read. He liked chess, and this became a frequent subject of discussion. At one session he showed up with a chess set, and for nearly a year we played a game at the end of each session.

R saw himself as a religious person. We spoke of our shared interest in the Bible and the “healthy” uses of religion to help us find our place in the universe and to serve as a source of values and a guide for life decisions. We contrasted this with the less “healthy” uses R had made of religion during his psychotic episodes. R was surprised that I encouraged his religious interests.

R often spoke of his loneliness and sense of failure. “Look at what my friends from college and grad school are doing. They all have good jobs and wives and kids, and look at me.” R was prone to form “crushes” on women with whom he would have contact. Usually, these were in situations in which it was unrealistic to expect any romantic relationship to emerge. While painful, I would suggest to R that he not act on his feelings.

Three years after we began working together, he met M at the day program. M, a few years younger than R, had intractable grand mal epilepsy and mild mental retardation. R was quite attracted to her but anxious and frightened at the strength of these feelings. We spent hours discussing how he might approach M and win her trust and affection. Having been sexually assaulted by several male patients in the past, she was initially put off by R’s attention. However, over a period of months, they started to date and R slowly earned both her trust and that of her guardians.

As they became closer, R was frequently troubled by feelings of jealous rage. When he saw M talking with other men, he was often overwhelmed with anger and on several occasions acted on these feelings, with an ensuing bitter argument with M. After much discussion, R gradually became able to accept the fact that M enjoyed male attention and might flirt because it made her feel good about herself.

More than a year after they met, they started spending nights together, and R eventually received permission to live with M. He assumed an increasing proportion of her care: checking her antiseizure medications, bathing her, washing her long hair, and brushing her teeth to control the diphenyl­hydantoin-induced gum hypertrophy. In the early years of their relationship, before new medications brought her seizures under better control, R would get up with M several times each week to change the sheets after she had urinated on them during a nocturnal seizure.

M would accompany R to see me every couple of months. She and I developed an agreement whereby she was to call me when R developed worrying symptoms. Over nearly 8 years, she called me three times to report problems, always appropriately. As R assumed more and more responsibilities for the care of M and for the apartment, he became less willing to spend time at volunteer work as he felt that caring for M was “his job.”

Each of my more than 100 sessions with R followed a similar pattern. I would ask about his mental health, specifically asking about psychotic symptoms and medication side effects. We would discuss the relationship with M and any problems that might be emerging. R wanted both to care for M but not to make her too dependent on him. We discussed their sexual relationship. I would ask after his family, how his parents were doing and how he was getting along with them. If the weather was nice, in the early years, we would sometimes take a walk and talk rather than sit in the office.

One topic we discussed at length, which illustrates the nature of our interactions, began with a flirtation between R and a staff member at the Red Cross where he was volunteering. Initially, R was uncertain how to respond to her apparent interest in him, and he initially concluded that he should quit the volunteer job. We talked about the difficulty everyone has in accurately perceiving the “signals” that men and women send each other. Perhaps, I suggested, he was misinterpreting her interest. Regardless, I urged R to be polite to her but not otherwise encourage any personal relationship. It became clear, however, that he was quite attracted to her, and we spoke of issues of fidelity. Eventually, he decided that he could keep the job, did not want to try to have an affair with her, and could act professionally with her without risking losing his composure.

Four times over 10 years R had exacerbations of his illness. These would begin by his spending hours pacing, muttering, yelling, and laughing to himself. He would develop delusion-like ideas such as the staff were against him or were trying to break up his relationship with M or that his parents had done something terrible to him as a child (e.g., tortured him on a rack). The “thought transfer” experiences would return but without their prior intensity. He never displayed any thought disorder nor did he completely lose insight into the possibility that these were “sick thoughts.” In each instance, with increased thiothixene, more frequent meetings, and sometimes a meeting with R and M to discuss issues, the disturbance would pass within 1 to 2 weeks.

R and I discussed new pharmacologic treatments. Shortly after the publication of the Kane et al. study (1), I raised the issue of a clozapine trial. While not an ideal candidate for this treatment (his positive symptoms having responded well to thiothixene), its low side effect profile, possibly reduced risk for tardive dyskinesia, and greater efficacy with negative symptoms suggested that a trial might be indicated. R read up on clozapine and decided he did not want to take the risk of agranulocytosis. About a year after risperidone became available, we tried this agent, proceeding with a slow double taper, increasing the risperidone while decreasing, in approximately equal increments, the thiothixene. When we got down to 4 mg/day of thiothixene and 4 mg/day of risperidone, R experienced a clear exacerbation of his symptoms. He was frightened, and we agreed to discontinue the risperidone and reinstate his full dose of thiothixene. He recovered within 2 weeks. We have recently been discussing the possibility of another trial of one of the new atypical antipsychotics. His negative experience with risperidone has made him hesitant, but he has been expressing more interest in this idea lately.

DIAGNOSIS

“By the book,” R meets the DSM-IV criteria for schizophrenia. He had bizarre delusions and hallucinations for at least several weeks before the second and third hospitalizations, and these symptoms ceased only with neuroleptic treatment. For more than 6 months after his third hospitalization, he had “soft” psychotic-like phenomena that would meet criteria for residual symptoms. He has experienced substantial occupational dysfunction as a result of his illness. Indeed, his history indicates that he is chronically “at risk” for active psychosis that can be precipitated either by psychosocial stressors or reduction in medication.

However, there are several atypical features in R’s illness that suggest a schizoaffective syndrome. Grandiose delusions and excited behavior were evident in his second and third psychotic episodes. Catatonic symptoms, long recognized as a possible concomitant of affective illness (2), were also present. He has had a positive response to lithium, although the effect seems to be predominantly antipsychotic in nature. Although noted during his earlier admissions, he has never, in the course of our therapy, had any more than the mildest levels of avolition, and he has never demonstrated alogia, apathy, or emotional blunting. His grooming and self-care have always been excellent.

The major problem with the diagnosis of schizoaffective disorder is the absence of any evidence for substantial depressive or manic symptoms. I have watched closely for these and never noted more than mild dysphoria without substantial neurovegetative symptoms.

I would conclude that R has a form of schizophrenia that is dominated by positive symptoms with little if any negative symptomatology. From neither a symptomatic nor a psychosocial perspective has he been able to make complete interepisode recoveries, so a schizophreniform diagnosis is probably not appropriate. While some atypical features are present in his illness course, the absence of prominent affective symptoms rules out the diagnosis of schizoaffective disorder.

REVIEW OF TREATMENT COURSE

In writing this article, R and I independently listed features of our work together that were particularly helpful. Some items appeared on both lists; others on only one. Here is a sampling.

1. R recalled more clearly than I the discussion with his parents about the etiologic role of adolescent drug use in his psychotic illness. I was surprised to hear him say, “One of the most important things you ever did for me was to tell my parents that the marijuana I smoked as a kid did not cause my schizophrenia. You were an authority for my parents, so when you said that, they stopped blaming me. That was really important.”

2. We both agreed that encouraging R to stop getting high-level jobs commensurate with his education was important. While I recalled that both R and his parents resisted my suggestion, R remembered that he and I had both agreed and it was his parents that needed convincing. This is the one area in my work with R about which I am still ambivalent. R has not had paid employment since he began receiving disability payments. When I suggest he seek low-stress employment, he resists, in part because too much outside income would threaten his benefits. Furthermore, he argues that he needs to be with M to supervise her during most daytime hours. Caring for her, he states, is his job.

3. We both agreed that much of the satisfaction that R feels with his life derives from his relationship with M. He surprised me by stating that he could not have established and maintained this relationship without my guidance. He was, he said, “able to talk to you about this man to man and could always trust your advice.” In retrospect, I can see that R was ill equipped to navigate the strong feelings of attraction, love, and jealousy that accompany enduring love relationships. Two of his psychotic episodes involved romantic breakups. Given his vulnerability to a breakdown in reality testing when confronted with the vicissitudes of a romantic relationship, R’s ability to establish and maintain an intimate and mutual loving relationship with M is a major triumph. He recently wrote, “As a result of many years of therapy, it is very clear to me that fantasy and limited personal involvement with other women is OK, but actual infidelity is clearly wrong. I have always been very confused on this point.”

4. R saw my giving him “permission” to alter his dose of thiothixene as vital to the success of his therapy. “I would have had probably half a dozen relapses over these last years if you hadn’t taught me that—at the first sign of problems—I should increase my dose. I only wish that I had known that earlier. It might have prevented some of my previous breakdowns. But then, it took me a pretty long while to learn that these medicines were really my friends and that I needed them. I guess I was a slow learner.”

5. We both agreed that the lithium therapy, in particular its effect on reducing the “thought transfers,” had been helpful.

6. R recalled more than I did our discussions about religion. He said that he felt that I have helped him to develop a “healthy religious life.” He had wanted to have a religious and prayer-full life that brought him close to God. Yet he knew that too much focus on religion and the Bible could make him get sick again. He said that our discussions helped him find a way to “more lightly pray” and to “ pursue religion with reasonable zest” but not to become preoccupied and risk “getting sick again.”

7. Finally, R spoke about his learning the “proper attitude toward a life of chronic mental illness.” He said this had two main parts. The first was the importance of habit. He referred here to my oft-repeated insistence on his keeping himself busy with intellectual and physical activity and being involved in activity outside the home. The second was the “right attitude.” Here, I think he was reflecting on the many discussions we had about how to deal with the disability of schizophrenia—about how to accept but not “give in” to these problems and how to avoid bitterness. In one of our most recent meetings, I asked him if he had thought about why he had developed schizophrenia. He replied,

CONCLUSIONS

This course of therapy with R illustrates the multifaceted nature of the treatment of chronic psychotic illness (3). Interventions were made at the level of pharmacology (flexible neuroleptic dosing and lithium carbonate augmentation), social factors (moving out from a conflictual home environment and reduction of occupational stress), psychological issues (intimacy in love relationships), and spiritual concerns (developing a “healthy approach” toward religion). I did not begin my work with R with an overarching theoretical perspective of how to treat schizophrenia. Rather, I tried to deal with the range of issues that confronted us in as pragmatic a way as I could given the available resources. In reflecting on my work with R, I have realized that my relationship with him has had two facets that have interwoven with one another over time. I have tried to be for him both a “physician-expert” who has helped to “manage” his schizophrenia and an “advisor-colleague” who has tried to provide guidance and counsel on a range of very human problems.

Received April 14, 1998; revision received July 16, 1998; accepted Aug. 6, 1998. From the Departments of Psychiatry and Human Genetics, Virginia Institute for Psychiatric and Behavioral Genetics, Medical College of Virginia of Virginia Commonwealth University, Richmond. Address reprint requests to Dr. Kendler, P.O. Box 980126, Richmond, VA 23298-0126. Supported in part by NIMH Research Scientist Award MH-01277 to Dr. Kendler The author thanks Patrick Sullivan, M.D., Alan Gruenberg, M.D., Elizabeth Gander, M.A., and R for helpful comments on earlier drafts.