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Copyright 2000 American Psychiatric Association.
Living and Dying With HIV/AIDS: A Psychosocial Perspective [Clinical Case Ruiz, Pedro M.D.
From the Department of Psychiatry and Behavioral Sciences, University of Texas Medical School at Houston.
Received Aug. 9, 1999; revision received Nov. 2, 1999; accepted Nov. 3, 1999. Address reprint requests to Dr. Ruiz, Department of Psychiatry and Behavioral Sciences, University of Texas Medical School at Houston, 1300Moursund St., Houston, TX 77030; (e-mail).
Jose was a 32-year-old Mexican American man who self-referred himself to me for treatment of his anxiety andfears about contracting HIV. He had attended a presentation on HIV/AIDS prevention that I had given 1 year earlierat 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 notapprove of his homosexual orientation. His father was a general surgeon, and his mother was a housewife. Bothparents 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 thesame profession (accounting).
When I saw Jose for the first time in the early 1990s, he appeared anxious, tense, worried, and very fearful. Jose'ssymptoms at the time of assessment included worries and fears about contracting HIV, a steady weight loss of about25 pounds over the previous 6 months, difficulty in falling asleep, lack of concentration, tension, and fatigue. Hewas quite concerned about his steady weight loss, lack of concentration, sleep difficulties, and his feeling tired mostof the time. He noted that his loss of weight and fatigue had started about 6 months earlier; the rest of his symptomshad developed over the previous 4-5 months and had become progressively worse during the past 3-4 months. It wasaround 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 homosexualencounters. However, after 1 year or so of steady living together, Jose and his partner saw no reason to protectthemselves any longer, since they both had previously tested negative for HIV and were fully committed to eachother.
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 droccasionally experimented with marijuana while socializing with hL,occasional social gatherings. He described his childhood as a happy one, devoid of any substantial trauma or majornegative 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. Whilehe reported difficulties in falling asleep-it sometimes took up to 2 hours-he did not experience early morningwakening. He denied having crying spells or suicidal ideation. He also denied having hallucinatory experiences ordelusions. 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 judgmentwas good. He showed no loosening of associations, and neither ambivalence nor autism was detected, but hedisplayed an anxious mood. While he demonstrated very good insight, he also was demonstrating considerabledenial vis-d-vis his situation and condition. His fund of knowledge was excellent, and he appeared to be quiteintelligent 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 greatlyconcerned about his potential death. I provided him with understanding, empathic listening, active support, andextensive education, at a professional-peer level, about HIV and AIDS. I also referred him to an infectious diseasespecialist whom I knew well as a result of previous collaborations with HIV and AIDS cases. I told Jose that theinfectious disease specialist would confidentially report the results of the HIV test to me and that I would personallyreport the results to Jose. I thought that the already developing doctor-patient relationship and therapeutic alliancewould put me in a better position to communicate to him any possible untoward news.
At the next session, he addressed his concerns about disappointing his family vis-a-vis his homosexuality. He wasthe oldest child and only son. Throughout Jose's life his father had demonstrated high expectations for Jose: a goodmarriage, a nice wife, wonderful children, and a family-oriented life similar to his own. His mother also frequentlytold Jose that she wanted to have several grandchildren and live close to them during her golden years. These weresome of the reasons Jose left home several years ago without ever telling his family about his homosexualorientation. Jose always thought that he could keep his real sexual identity hidden by living in a big city whileoccasionally visiting his family at home.
After two or three weekly sessions with Jose, I learned from the infectious disease specialist that two serial HIVtests had shown that Jose was HIV-positive. By that time, the therapeutic alliance with Jose had been wellestablished, 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 perhapswhat 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; atother points he would express disbelief and anger at the whole world. During these times I listened empatheticallyand underlined the fact that we were all "human beings," each with our own strengths and weaknesses. Slowly, Josebegan to accept his condition, his limitations, his realities, and his options. On two to three occasions I met with himand his partner and helped them settle ambivalent feelings and emotions. I also noted that despite the fact that hispartner had infected Jose with HIV, they still cared a lot for each other. By this time his partner had also beenretested for HIV, and the results had been positive. He had contracted HIV during an out-of-town business trip whenhe attended a party at a friend's apartment while under the "heavy" influence of cocaine. By this time, Jose and hispartner 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 formost of the day, diminished interest for almost all daily activities, strong feelings of guilt and worthlessness,difficulties in concentrating, crying spells, and mild suicidal ideation but no definite plan of action. Up to then, Ihad been prescribing for him a regimen of oral lorazepam, 1 mg t.i.d, on an as-needed basis for treatment of hisanxiety 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 nevershowed any signs of relapse.
After close to 2 years of providing HIV treatment to Jose, the infectious disease specialist informed me that Jose wasnot 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 impairedjudgment. When Jose was first given zidovudine, his HIV infection was quite advanced, since he had been infectedfor some time before the treatment began. In addition, zidovudine treatment resulted in severe bouts of nausea andheadaches. 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 bothmedications produced severe pancreatitis.
During this period, I focused Jose's treatment on family and work concerns. Jose felt that it was time to beginsettling issues with his family and also time to go on medical leave from work. He expressed his desire that I bepresent when he told his parents about his sexual orientation and illness. I consented. I met with Jose, his father, andhis mother in my office. It was a difficult moment for everyone involved, including myself. Jose's father showedcomplete denial and disbelief, even anger at Jose. His mother was devastated and in shock. I decided to see themboth daily for several sessions, sometimes with Jose and sometimes without him. The treatment process wascertainly not an easy one. In the beginning, the parents were thinking more about themselves than about Jose. Attimes I had to be mildly confrontational with them, since education and empathic listening were not enough to breaktheir denial and resistance. Finally, they began to accept the reality of the situation and, eventually, started toprovide emotional support for Jose. Later on, Jose's sister and her family were apprised of the situation; they weremore 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 morerealistic 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 wasfeeling very guilty, not only because he had infected Jose with HIV but also because Jose's illness was getting worsewhile 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 tocope 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. Afull-blown AIDS illness had developed. Upon his discharge from the hospital, Jose addressed his work situation inseveral of his therapy sessions. His cognitive functions were not getting any better. He proceeded to go on medicalleave from work, which was then followed by a disability leave. At this point, I prescribed a regimen of oralmethylphenidate, 30 mg/day, in consultation with and with the approval of the infectious disease specialist. Over thenext several sessions, Jose's legal situation was addressed; obviously, it was time for Jose to put his legal affairs inorder. A lawyer was consulted, life and disability insurance were reviewed, Jose's properties were inventoried, and awill 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 aboutnot 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 heheard that. During the home therapy sessions, death was discussed at length. By this time, denial, projection, andrationalization were no longer needed. Jose had slowly mastered his fate, his destiny. During one of the hometherapy sessions, his parents were visiting him. At one point, Jose's father said that he had bought a family burialsite, and that he and his wife wanted Jose to be buried there. Jose consented and said nothing else; he then looked atme and peacefully smiled; it was obvious to me that Jose had finally found peace within himself and about his ownidentity. 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'spartner and family had been informed. It was late in the afternoon, about 6:00 p.m., when I arrived at Jose'sapartment. Jose's father was holding one of Jose's hands; Jose's partner was holding the other, Jose's mother wasquietly praying in front of a picture of a Catholic saint in Jose's bedroom. I sat near her in a chair and reflected for awhile 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 inJose's parents' town. While in church during the mass, Jose's father delivered a brief eulogy. In this eulogy, Jose'sfather said, "We are all, especially me, very proud of Jose's life; Jose lived in accordance to his principles and hisidentity. While dying, Jose achieved self-actualization. Because of it, he died in peace. Jose will always be an idealrole model for all of us." I have presented the case of a Mexican American homosexual man who suffered from HIV and AIDS as anillustration of 1) the psychiatric aspects relevant to the diagnosis and treatment of HIV and AIDS, 2) theneuropsychiatric complications of HIV and AIDS and their management, and 3) the psychosocial implicationsassociated 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 importantto recognize a series of issues and conditions that are likely to surface. For instance, it is imperative that a strongdoctor-patient relationship and therapeutic alliance be established as soon as possible (1.2). Without the trust andconfidence 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 thatmatter.
Anxiety disorders become very prominent among patients with HIV and AIDS (3-_5). When the onset of theseillnesses occurs, it is important to know not only the role of psychopharmacological agents (5, and relevancy of psychotherapeutic interventions (78). In many ways, the psychotherapeutic interventions play amuch 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. Inthis respect, the type of illness, the medical and psychiatric complications, and psychosocial conditions shoulddictate the treatment approach.
Mood disorders are bound to develop in patients suffering from HIV and AIDS, given the frequency and severity ofthe 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 (34_) 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 bea 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 andAIDS (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'smedical 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 HIVinfection (17, 18). This type of contagion has become very prevalent in recent years. In fact, in 1998 the percentageof AIDS cases contaminated through intravenous drug use in the adultladolescent population was 27% (19).
In the management of neuropsychiatric complications, several disorders and conditions are frequently observedamong patients suffering from HIV and AIDS. Dementia (16, 20, 21) and delirium (20, 22) are the most commondisorders 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, vitamindeficiencies (e.g., B6, B12, or E), peripheral nervous system disorders, and other related neuropsychiatric conditions At times, the treatment approaches for dementia and even depression require the utilization of psychostimulants, asthis case illustrated (11, 23). In this regard, it is important to be aware that antidepressant agents with anticholinergicqualities can certainly make the dementia worse ),221 . The type of dementia observed in HIV and AIDS is of asubcortical nature (18). The neuropsychiatric manifestations are characterized as an acquired intellectual impairmentthat results in persisting deficits in areas such as memory, language, cognition, visuospatial skills, and personalitychanges (18). However, it is important to keep in mind that patients suffering from HIV and AIDS might also sufferfrom 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 ofcompliance, 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 certaincultural groups, particularly Hispanics, with its barriers vis-a-vis the understanding and acceptance of homosexualidentity (9, 24). Another factor to consider is the difference between first and second migrant generations in theprocess and levels of acculturation (26). Even though this case has several cultural connotations, there is nothing inthe case that is culture-bound. In other words, the psychosocial factors addressed in this case are relevant andapplicable to patients suffering from HIV and AIDS from any ethnic or cultural group. Other factors to consider inthe treatment of patients with HIV and AIDS include reactions related to the HIV-infected sexual partner's feelingsof 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 whenaddressing 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 beaddressed when treating HIV and AIDS patients or any potential terminally ill patient. In addition, the psychosocialunderpinnings 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 Catholicreligion, in the process of coping with HIV and AIDS was also well illustrated in this case. Furthermore, thebeneficial role of spiritually oriented self-help groups needs to be underlined when treating HIV and AIDS patients . 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, treatmentflexibility, and ongoing availability during the dying phase.
Treatment flexibility from a psychotherapeutic point of view was illustrated in this case with the provision ofcouples therapy, family therapy, and home visits. Along these lines, treating a terminally ill patient requires a fullcommitment 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.
While the availability of antiretroviral and other useful medications for the treatment of HIV and AIDS was ratherlimited in the early 1990s, we are fortunate now in that there are much better treatment options for HIV and AIDSthat 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 rolein the diagnosis and treatment of patients with HIV and AIDS. Therefore, it is most important for psychiatricpractitioners to learn and to incorporate these clinically oriented aspects, particularly the psychosocial aspects, intheir treatment armamentarium. This case illustration was written and published with this aim in mind.
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