Living and Dying With HIV/AIDS: A Psychosocial Perspective

CASE PRESENTATION

History

Jose was a 32-year-old Mexican American man who self-referred himself to me for treatment of his anxiety and fears about contracting HIV. He had attended a presentation on HIV/AIDS prevention that I had given 1 year earlier at a “professional group.”

Around the age of 14, Jose realized that he was attracted to men. He had his first homosexual experience at age 16. Jose had moved away from home at the age of 18 because he was concerned and afraid that his parents would not approve of his homosexual orientation. His father was a general surgeon, and his mother was a housewife. Both parents were born in Mexico and had migrated to the United States 3 years before Jose was born. Jose had a younger sister who was a teacher and was married with two children.

For years after he had moved away from home, Jose lived alone in an apartment. However, for the past 3 years he had been living with a steady lover who was 2–3 years older, Caucasian, Catholic (as was Jose), and worked in the same profession (accounting).

Initial Assessment

When I saw Jose for the first time in the early 1990s, he appeared anxious, tense, worried, and very fearful. Jose’s symptoms at the time of assessment included worries and fears about contracting HIV, a steady weight loss of about 25 pounds over the previous 6 months, difficulty in falling asleep, lack of concentration, tension, and fatigue. He was quite concerned about his steady weight loss, lack of concentration, sleep difficulties, and his feeling tired most of the time. He noted that his loss of weight and fatigue had started about 6 months earlier; the rest of his symptoms had developed over the previous 4–5 months and had become progressively worse during the past 3–4 months. It was around this time that Jose began to think that he might have become infected with the HIV virus.

Before living with his steady partner, Jose had been very conscientious in protecting himself during his homosexual encounters. However, after 1 year or so of steady living together, Jose and his partner saw no reason to protect themselves any longer, since they both had previously tested negative for HIV and were fully committed to each other.

Jose denied any history of psychiatric illness in his family or himself and also denied any history of surgical procedures or serious medical illness. He also denied any current drug use. During his high school years, he had occasionally experimented with marijuana while socializing with his peers. His drinking pattern was limited to occasional social gatherings. He described his childhood as a happy one, devoid of any substantial trauma or major negative events. He also denied any sexual abuse as a child.

Jose noted that even though he had lost about 25 pounds in the last 6 months, his appetite had not diminished. While he reported difficulties in falling asleep—it sometimes took up to 2 hours—he did not experience early morning wakening. He denied having crying spells or suicidal ideation. He also denied having hallucinatory experiences or delusions. He did not appear confused and was oriented to time, place, and person. Some cognitive difficulties were noted in that he initially had trouble subtracting seven from 100, but he was finally able to do so toward the end of the assessment interview after he was more relaxed and calm. He was able to think abstractly, and his recent memory and remote memory were intact. He recalled three objects after 5 minutes without difficulties; his judgment was good. He showed no loosening of associations, and neither ambivalence nor autism was detected, but he displayed an anxious mood. While he demonstrated very good insight, he also was demonstrating considerable denial vis-à-vis his situation and condition. His fund of knowledge was excellent, and he appeared to be quite intelligent and intellectually driven. He denied having phobias or experiencing panic attacks or obsessive-compulsive manifestations. He denied ever having problems with the law.

I thought that Jose was suffering from generalized anxiety disorder. I told him that I was willing to see him in individual therapy and that I would not be prescribing him any medications at that time. I also told him that it was more important that he have another HIV test. He was very concerned about confidentiality issues, potential problems at work, difficulties with his family, and relationship problems with his partner. He was also greatly concerned about his potential death. I provided him with understanding, empathic listening, active support, and extensive education, at a professional-peer level, about HIV and AIDS. I also referred him to an infectious disease specialist whom I knew well as a result of previous collaborations with HIV and AIDS cases. I told Jose that the infectious disease specialist would confidentially report the results of the HIV test to me and that I would personally report the results to Jose. I thought that the already developing doctor-patient relationship and therapeutic alliance would put me in a better position to communicate to him any possible untoward news.

Course of Treatment

At the next session, he addressed his concerns about disappointing his family vis-à-vis his homosexuality. He was the oldest child and only son. Throughout Jose’s life his father had demonstrated high expectations for Jose: a good marriage, a nice wife, wonderful children, and a family-oriented life similar to his own. His mother also frequently told Jose that she wanted to have several grandchildren and live close to them during her golden years. These were some of the reasons Jose left home several years ago without ever telling his family about his homosexual orientation. Jose always thought that he could keep his real sexual identity hidden by living in a big city while occasionally visiting his family at home.

After two or three weekly sessions with Jose, I learned from the infectious disease specialist that two serial HIV tests had shown that Jose was HIV-positive. By that time, the therapeutic alliance with Jose had been well established, and he showed much trust in me. I told him about the results of the HIV tests, counseled him about it, discussed his treatment options and therapeutic plans, referred him back to the infectious disease specialist, and underlined the fact that I would continue to treat him as needed. By the end of the session, I noted that he was in many ways more calm and relaxed, as if he knew all along that he was, in fact, HIV-positive. I thought that perhaps what he had primarily needed was empathy while he confronted the realities of his situation.

During the next several sessions, Jose was both angry and disappointed with his partner. At times, he was numb; at other points he would express disbelief and anger at the whole world. During these times I listened empathetically and underlined the fact that we were all “human beings,” each with our own strengths and weaknesses. Slowly, Jose began to accept his condition, his limitations, his realities, and his options. On two to three occasions I met with him and his partner and helped them settle ambivalent feelings and emotions. I also noted that despite the fact that his partner had infected Jose with HIV, they still cared a lot for each other. By this time his partner had also been retested for HIV, and the results had been positive. He had contracted HIV during an out-of-town business trip when he attended a party at a friend’s apartment while under the “heavy” influence of cocaine. By this time, Jose and his partner were under the care of the infectious disease colleague for their HIV infection.

Somewhat later, Jose began to show a lot of guilt about his family and religion. Actually, he had slowly been developing a moderate major depressive episode, with symptoms of early morning wakening, depressed mood for most of the day, diminished interest for almost all daily activities, strong feelings of guilt and worthlessness, difficulties in concentrating, crying spells, and mild suicidal ideations but no definite plan of action. Up to then, I had been prescribing for him a regimen of oral lorazepam, 1 mg t.i.d., on an as-needed basis for treatment of his anxiety or insomnia. At this point, I added a regimen of oral bupropion, which I slowly titrated up to 300 mg/day. After 5–6 weeks, Jose’s depression improved; I discontinued bupropion treatment after about 1 year, and Jose never showed any signs of relapse.

After close to 2 years of providing HIV treatment to Jose, the infectious disease specialist informed me that Jose was not responding well and that there were signs of deterioration in Jose’s illness. Likewise, I also had begun to note that Jose was suffering from mild signs of memory impairment, some language disturbances, and mildly impaired judgment. When Jose was first given zidovudine, his HIV infection was quite advanced, since he had been infected for some time before the treatment began. In addition, zidovudine treatment resulted in severe bouts of nausea and headaches. These side effects led to periods of noncompliance that, in turn, worsened the HIV infection. This clinical deterioration required higher doses of zidovudine, which resulted in severe hematological reactions, primarily granulocytopenia. Later on, Jose received treatment with dideoxyinosine and dideoxycytidine, but both medications produced severe pancreatitis.

During this period, I focused Jose’s treatment on family and work concerns. Jose felt that it was time to begin settling issues with his family and also time to go on medical leave from work. He expressed his desire that I be present when he told his parents about his sexual orientation and illness. I consented. I met with Jose, his father, and his mother in my office. It was a difficult moment for everyone involved, including myself. Jose’s father showed complete denial and disbelief, even anger at Jose. His mother was devastated and in shock. I decided to see them both daily for several sessions, sometimes with Jose and sometimes without him. The treatment process was certainly not an easy one. In the beginning, the parents were thinking more about themselves than about Jose. At times I had to be mildly confrontational with them, since education and empathic listening were not enough to break their denial and resistance. Finally, they began to accept the reality of the situation and, eventually, started to provide emotional support for Jose. Later on, Jose’s sister and her family were apprised of the situation; they were more understanding of Jose’s major life challenges.

After 2–3 months, Jose began to think again about suicide. This time, however, the suicidal thoughts were more realistic in nature, more existential, and not at all related to any signs of depression. He also became more “spiritual,” and the topics of religion, faith, and dying were openly addressed. By this time, Jose’s partner was feeling very guilty, not only because he had infected Jose with HIV but also because Jose’s illness was getting worse while his own illness had stabilized. At Jose’s request, I saw both of them together on many occasions. During this time, I referred Jose to a self-help religious/spiritual HIV/AIDS group. He began to feel better and was more able to cope with the deterioration caused by his illness and the dying process.

A few months later, Jose developed Pneumocystis carinii pneumonia; he had to be hospitalized and almost died. A full-blown AIDS illness had developed. Upon his discharge from the hospital, Jose addressed his work situation in several of his therapy sessions. His cognitive functions were not getting any better. He proceeded to go on medical leave from work, which was then followed by a disability leave. At this point, I prescribed a regimen of oral methylphenidate, 30 mg/day, in consultation with and with the approval of the infectious disease specialist. Over the next several sessions, Jose’s legal situation was addressed; obviously, it was time for Jose to put his legal affairs in order. A lawyer was consulted, life and disability insurance were reviewed, Jose’s properties were inventoried, and a will was drafted and signed. Jose decided to leave part of his estate to his partner, the rest to his family.

A few months later, Jose’s AIDS had worsened. It was difficult for him to be ambulatory. He was concerned about not being able to continue to come to see me for his therapy sessions. His concern and despair about the situation were quite clear. I told him that I would continue our therapy sessions at his home. He felt more relaxed when he heard that. During the home therapy sessions, death was discussed at length. By this time, denial, projection, and rationalization were no longer needed. Jose had slowly mastered his fate, his destiny. During one of the home therapy sessions, his parents were visiting him. At one point, Jose’s father said that he had bought a family burial site, and that he and his wife wanted Jose to be buried there. Jose consented and said nothing else; he then looked at me and peacefully smiled; it was obvious to me that Jose had finally found peace within himself and about his own identity. During our next session, Jose asked me if I would attend his eventual funeral. I said I would.

About 2 months later, the infectious disease specialist told me that death was imminent for Jose and that Jose’s partner and family had been informed. It was late in the afternoon, about 6:00 p.m., when I arrived at Jose’s apartment. Jose’s father was holding one of Jose’s hands; Jose’s partner was holding the other; Jose’s mother was quietly praying in front of a picture of a Catholic saint in Jose’s bedroom. I sat near her in a chair and reflected for a while on what it meant to live and to die with HIV and AIDS. About 1 hour later, Jose was dead.

Two days later, I attended a Catholic mass held in memory of Jose as well as his funeral, both of which were held in Jose’s parents’ town. While in church during the mass, Jose’s father delivered a brief eulogy. In this eulogy, Jose’s father said, “We are all, especially me, very proud of Jose’s life; Jose lived in accordance to his principles and his identity. While dying, Jose achieved self-actualization. Because of it, he died in peace. Jose will always be an ideal role model for all of us.”

DISCUSSION

I have presented the case of a Mexican American homosexual man who suffered from HIV and AIDS as an illustration of 1) the psychiatric aspects relevant to the diagnosis and treatment of HIV and AIDS, 2) the neuropsychiatric complications of HIV and AIDS and their management, and 3) the psychosocial implications associated with the diagnosis and treatment of HIV and AIDS.

With respect to the psychiatric aspects relevant to the diagnosis and treatment of HIV and AIDS, it is very important to recognize a series of issues and conditions that are likely to surface. For instance, it is imperative that a strong doctor-patient relationship and therapeutic alliance be established as soon as possible (1, 2). Without the trust and confidence that emanates from this therapeutic relationship, it is very difficult to ensure compliance and the much-needed continuity of care required by patients suffering from HIV and AIDS—or any potential fatal illness for that matter.

Anxiety disorders become very prominent among patients with HIV and AIDS (3–5). When the onset of these illnesses occurs, it is important to know not only the role of psychopharmacological agents (5, 6) but also of the role and relevancy of psychotherapeutic interventions (7, 8). In many ways, the psychotherapeutic interventions play a much bigger role when anxiety disorders are present among HIV and AIDS patients, as this case illustrated. Similarly, it is most important that the psychotherapeutic approaches be flexible enough to primarily address the needs of the patient rather than the training background, treatment philosophy, or type of practice of the therapist. In this respect, the type of illness, the medical and psychiatric complications, and psychosocial conditions should dictate the treatment approach.

Mood disorders are bound to develop in patients suffering from HIV and AIDS, given the frequency and severity of the stressors that these patients have to face during their illness (9, 10). When episodes of depression arise, they must be promptly and aggressively treated, preferably with an integrated approach that involves psychotherapeutic (3, 4) as well as psychopharmacological interventions (11, 12). Suicide, in particular, is a frequently observed phenomenon among patients suffering from HIV and AIDS (13–15). At times, as this case illustrated, suicide can be a symptom not only of depression but also of an existential condition related to life situations.

It is also important to underline the role of consultation-liaison psychiatry in the diagnosis and treatment of HIV and AIDS (4, 16). In this case, the collaboration between the infectious disease specialist and the psychiatrist (myself) was essential in handling the HIV testing phase (complete with pre- and posttest counseling), ensuring the patient’s medical and psychiatric compliance with treatment, and addressing the confidentiality issues, work-related factors, legal ramifications, and the dying phase of the illness.

Also illustrated in this case is the role of the use and abuse of substances in the mechanisms of contagion of HIV infection (17, 18). This type of contagion has become very prevalent in recent years. In fact, in 1998 the percentage of AIDS cases contaminated through intravenous drug use in the adult/adolescent population was 27% (19).

In the management of neuropsychiatric complications, several disorders and conditions are frequently observed among patients suffering from HIV and AIDS. Dementia (16, 20, 21) and delirium (20, 22) are the most common disorders or conditions seen in these patients. However, other neuropsychiatric conditions have also been observed, such as encephalitis, central nervous system infections and malignancies, Kaposi’s sarcoma, lymphomas, vitamin deficiencies (e.g., B₆, B₁₂, or E), peripheral nervous system disorders, and other related neuropsychiatric conditions (20, 21).

At times, the treatment approaches for dementia and even depression require the utilization of psychostimulants, as this case illustrated (11, 23). In this regard, it is important to be aware that antidepressant agents with anticholinergic qualities can certainly make the dementia worse (21). The type of dementia observed in HIV and AIDS is of a subcortical nature (18). The neuropsychiatric manifestations are characterized as an acquired intellectual impairment that results in persisting deficits in areas such as memory, language, cognition, visuospatial skills, and personality changes (18). However, it is important to keep in mind that patients suffering from HIV and AIDS might also suffer from dementia that is unrelated to their illness.

Finally, psychosocial complications are rather common among patients suffering from HIV and AIDS (24, 25). It is, therefore, very important for psychiatric practitioners to be aware of and sensitive about them. Otherwise, lack of compliance, treatment failure, and frustration for both patients and practitioners are likely to occur. In this case, many psychosocial as well as cultural factors were clearly depicted, such as the role of “machismo” among certain cultural groups, particularly Hispanics, with its barriers vis-à-vis the understanding and acceptance of homosexual identity (9, 24). Another factor to consider is the difference between first and second migrant generations in the process and levels of acculturation (26). Even though this case has several cultural connotations, there is nothing in the case that is culture-bound. In other words, the psychosocial factors addressed in this case are relevant and applicable to patients suffering from HIV and AIDS from any ethnic or cultural group. Other factors to consider in the treatment of patients with HIV and AIDS include reactions related to the HIV-infected sexual partner’s feelings of betrayal, such as anger and mistrust, as illustrated in this case.

As this case has shown, the need for counseling both before and after HIV testing is of utmost importance when addressing psychosocial concerns of patients with HIV and AIDS. Likewise, legal issues related to confidentiality, disability, life insurance, will and testament, and the like are all very important psychosocial factors that need to be addressed when treating HIV and AIDS patients or any potential terminally ill patient. In addition, the psychosocial underpinnings of learning about one’s positive HIV test results—as well as the reactions of numbness, denial, anger, and, eventually, acceptance—were very well illustrated in this case. The impact of religion, particularly the Catholic religion, in the process of coping with HIV and AIDS was also well illustrated in this case. Furthermore, the beneficial role of spiritually oriented self-help groups needs to be underlined when treating HIV and AIDS patients (27). Work setting issues also need to be attended to when treating potentially disabling illnesses like HIV and AIDS. Finally, this case strikingly illustrates the very critical and, I should add, human needs of patients with HIV, AIDS, or any other potentially fatal illness for that matter: acceptance, support, stable continuity of care, treatment flexibility, and ongoing availability during the dying phase.

Treatment flexibility from a psychotherapeutic point of view was illustrated in this case with the provision of couples therapy, family therapy, and home visits. Along these lines, treating a terminally ill patient requires a full commitment to continuity of care. The treatment cannot stop after an episode of depression has lifted, after anxiety symptoms have subsided, when the patient is no longer ambulatory, or during the patient’s dying phase. As this case illustrated, the treatment process can sometimes require our intervention even after the patient dies.

CONCLUSIONS

While the availability of antiretroviral and other useful medications for the treatment of HIV and AIDS was rather limited in the early 1990s, we are fortunate now in that there are much better treatment options for HIV and AIDS that can prolong life and also improve the quality of life. Still, there can be no doubt that psychiatric, neuropsychiatric, psychopharmacological, psychotherapeutic, psychosocial, and cultural aspects all play a major role in the diagnosis and treatment of patients with HIV and AIDS. Therefore, it is most important for psychiatric practitioners to learn and to incorporate these clinically oriented aspects, particularly the psychosocial aspects, in their treatment armamentarium. This case illustration was written and published with this aim in mind.

Received Aug. 9, 1999; revision received Nov. 2, 1999; accepted Nov. 3, 1999. From the Department of Psychiatry and Behavioral Sciences, University of Texas Medical School at Houston. Address reprint requests to Dr. Ruiz, Department of Psychiatry and Behavioral Sciences, University of Texas Medical School at Houston, 1300 Moursund St., Houston, TX 77030; [email protected] (e-mail).