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Routine Care and Psychosocial Support of the Patient With the Acquired Immunodeficiency Syndrome
AIDS and Other Medical Problems
in the Male Homosexual
0025-7125/86 $0.00
+ .20
Routine Care and Psychosocial Support of the Patient With the Acquired Immunodeficiency Syndrome Donald 1. Abrams, M.D.,* James W. Dilley, M.D.,t Linda M. Maxey, R.N.,:j: and Paul A. Volberding, M.D.§
INTRODUCTION When the AIDS Outpatient Clinic and Ward were established at San Francisco General Hospital in 1983, epidemiologists and statisticians were forecasting a future epidemic of unimaginable magnitude. By mid-1985, over two new cases of acquired immunodeficiency syndrome (AIDS) were diagnosed each day in the city. As of January 1, 1985, there was an average of one death a day from AIDS in San Francisco. The foresight involved in anticipating this dilemma by the creation of centralized care facilitie~ has yielded tangible benefits. Through the close cooperation of the City of San Francisco and the University of California, AIDS patient care and research activities at San Francisco General Hospital serve as a worldwide model system.·so The AIDS Clinic, beginning with one physician, two nurses, and an administrative secretary, has grown to a full-time staff of nearly 50 healthcare providers, epidemiologists, protocol managers, computer personnel, psychosocial support teams, and clerical workers. In mid-1985, the average census reached 1200 patient visits per month, reflecting health-care services provided to roughly 35% to 40% of AIDS cases alive in San Francisco and *Assistant Director, AIDS Activities, San Francisco General Hospital; and Assistant Clinical Professor of Medicine, Cancer Research Institute, University of California, San Francisco, School of Medicine, San Francisco, California t Assistant Clinical Professor, Department of Psychiatry, San Francisco General Hospital; and University of California, San Francisco, School of Medicine, San Francisco, California *Collnseling Coordinator, Department of Nursing, San Francisco General Hospital; and Shanti Project, San Francisco, California §Assistant Professor of Medicine, Cancer Research Institute, Universitv of California, San Francisco, School of Medicine; Chief, Medical Oncology, and Director, AIDS Activities, San Francisco General Hospital, San Francisco, California
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a substantial number of patients with AIDS-related conditions. Centralization of facilities in this manner has allowed for the development of expertise among the health-care professionals, all of whom are dedicated to providing top-quality care with compassion and sensitivity. It has also facilitated the implementation of well monitored, carefully controlled research protocols aimed at understanding the epidemiology, psychosocial response, and optimal treatment modalities available for combating this complex and devastating disease. Overcoming initial concerns over the creation of a "leper colony" ambiance, the 12-bed AIDS inpatient ward has developed into one of the model units at San Francisco General Hospital. Staffed by professionals who have voluntarily chosen to work on the ward, the nursing personnel has developed a degree of familiarity and expertise regarding hospital problems unique to the AIDS patient that enables them to serve as a valuable resource to medical house staff, off-unit nursing staff, and attending physicians. Patients hospitalized on the unit enjoy the spirit of comradery that prevails, as well as the on-site availability of psychosocial support services and frequent social distractions, complete with catered meals and entertainment, donated by members of the San Francisco community. Currently a 12-bed unit, the AIDS ward will soon double in capacity. Within the first 6 months of its inception, the success of the inpatient unit, in addition to the growing number of patients evaluated in the outpatient clinic, necessitated boarding of AIDS patients off of the specialty ward. Over the past year, the AIDS census of the llO-bed medical service at San Francisco General Hospital has ranged from 20 to 32 inpatients. Again, this concentration oflarge numbers of patients in a single setting not only serves to provide optimal care, but also facilitates clinical investigation. The demographics of the San Francisco AIDS epidemic are somewhat unique in that, to date, 98% of patients diagnosed have been homosexual or bisexual men. 22 , 37, 38 AIDS patients not employing the services of San Francisco General Hospital are cared for in the community by a score of physicians who have established themselves as expert in the problem and who have previously been identified as providing the bulk of health care to the local homosexual community. Patients are often referred to the AIDS Clinic for a one-time consultative visit or for participation in an outpatient experimental treatment protocol. An ongoing dialogue is maintained with the community physician regarding the progress of the patient on protocols, as well as the availability of new treatment programs. As much as possible, patients with established primary-care providers are encouraged to maintain their relation with their specified physician. Hospitalization for intercurrent opportunistic infection is encouraged at the admitting facility of the private doctor to ensure equitable distribution of cases among the numerous hospitals in the city, thereby allowing local staffs to gain the necessary firsthand experience that can only serve to alleviate fears and encourage highquality patient care. This article will focus on routine medical care and psychosocial support of the patient with an AIDS diagnosis. It has become obvious, however, that those who have been diagnosed with a malignancy or opportunistic infection meeting the Centers for Disease Control criteria constitute only
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the "tip of the iceberg." Infection with the AIDS retrovirus results in a spectrum of states ranging from the asymptomatic carrier or seropositive individual, through patients with often debilitating AIDS-related conditions, to those with bona fide AIDS. I, 2, 19, 28, 44, 49 Although focusing on the last group, this article will also highlight some of the peculiar concerns relevant to care and support of those constituting the base of the AIDS "iceberg." ROUTINE CARE OF THE AIDS PATIENT AIDS is a constellation of a multitude of disparate disease processes unified by a common thread of severe acquired immune dysfunction. 12, 13, 43 The treatment currently available for the malignancies and opportunistic infections associated with AIDS has been reviewed in this issue. The routine care of the person with AIDS is complicated by the persistence of mystery and fear that shrouds the epidemic, permeating throughout society to reach even the most enlightened of health-care providers. Guidelines for routine care are also confounded by the wide variation in pace of progression observed among individuals within the same category of disease diagnosis. Some patients with Kaposi's sarcoma, for example, may remain essentially well with relatively indolent disease for years with or without therapeutic intervention. 26 , 35, 50 Others may rapidly develop a complicating opportunistic infection and begin a brisk downhill course. An apparent certainty, however, remains that an AIDS diagnosis is currently accompanied by an ensurance of death within 2 years. 39 With this ultimately fatal prognosis, the provision of routine care can be divided into two phases. In the early stage following an AIDS diagnosis, the provider should encourage standard practices of health maintenance and should be on guard for early warnings of significant changes in clinical condition. For the patient approaching death, ensurance of physical comfort and avoidance of a sense of rejection and isolation are paramount considerations. Early-Stage Routine Care The average age of the AIDS patient in San Francisco is 35 years.:J8 For the young man in the prime of his life with newly diagnosed Kaposi's sarc~ma or just discharged following therapy for an episode of Pneumocystis carinii pneumonia, acceptance of his own mortality is frequently sublimated. Patients most often are hopeful that through manipulation of life-style factors, they may be able to "beat the odds" and become "one of the survivors." Patients in this situation are encouraged to adopt programs of adequate rest, balanced nutritional intake, vitamin supplementation, tolerable exercise programs, and restriction of nonessential alcohol and recreational drug intake in conjunction with any primary disease therapy or experimental protocol in which they may be participating. Elimination of exogenous stress often includes terminating employment and accepting disability. For many patients, especially those in the "honeymoon period" following treatment of a first episode of Pneumocystis pneumonia, the months following an AIDS diagnosis may be experienced as some of the more healthful of their lives due to such life-style modifications.
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Physicians should monitor patients monthly for changes in clinical condition or laboratory parameters that may suggest an impending deterioration. Development of more severe constitutional symptoms, deterioration in hematologic values, or a rising erythrocyte sedimentation rat~, with or without specific organ system complaints, may herald the development of an opportunistic infection. If such changes in clinical condition or laboratory parameters occur, additional organ-specific tests or a general work-up including chest x-ray, pulmonary function tests, total-body gallium scanning, computed tomc6raphy of head or abdomen, and/or bone marrow aspirate with culture and biopsy may be warranted. Serum cryptococcal antigen titer may indicate the presence of occult cryptococcal meningitis or sepsis in the absence of central nervous system findings. Serum titers for Toxoplasma do not routinely correlate with the presence of central nervous system lesions. 32 In evaluating fever in the ambulatory non debilitated AIDS patient, the unorthodox procedure of obtaining outpatient blood cultures has been useful. Patients will rarely be found to have a bacterial process. More frequently, the studies will yield positive results on fungal or mycobacterial culture. 34 If no source of fever can be discovered, patients often obtain symptomatic relief from institution of therapy with acetaminophen or a nonsteroidal anti-inflammatory agent. Although there has been no conclusive evidence that early diagnosis and therapeutic intervention actually improve the survival for any of the AIDS-associated infections or malignancies, attentive evaluation of the patient's complaint relieves an often perceived sense of hopelessness and helplessness of the physician in combating the ultimate outcome of their disease. Many patients in this phase focus their energy on keeping intact and strong so that they might be able to benefit from "the miracle cure," often perceived as being just a few months away. Late-Stage Routine Care The goals of care for the patient with preterminal disease revolve around maintaining patient comfort and ensuring that the patient has finalized his worldly affairs. Discussions regarding the patient's attitudes toward cardiopulmonary resuscitation are mandatory should the patient be admitted to the hospital during the terminal phase. Through sensitive counseling, knowledge of the natural history of AIDS, and a desire to achieve a "death with dignity," most patients choose a "no code" status at our institution. Despite a marked increase in hospital bed utilization by AIDS patients at San Francisco General Hospital over the past years, intensive care unit days have decreased for this population. 51 A large percentage of AIDS patients choose to remain at home during the final days of their illness. This has been greatly facilitated by the outstanding contribution of the Visiting Nurse Association and the Hospice of San Francisco AIDS Unit. In addition to initiating discussions regarding resuscitation with the patient, preferably long before the need arises, the physician should also explore the patient's preparedness regarding termination of his affairs. Preparation of a will is encouraged. Many AIDS patients experience a
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debilitating dementia terminally. 4, 5, 29, 40, 47 Destructive central nervous system pathology or delirium secondary to fever or metabolic derangements may cloud the sensorium in the final days. Where available, patients should be counseled regarding appointing someone to represent them with durable power of attorney to ensure that their wishes are heeded. In addition to the frequent presence of substantial psychologic pain, the dying AIDS patient must often endure severe physical pain, often neurogenic in origin. Liberal use of analgesics and sedatives should be employed in this situation. Fear of narcotic addiction is unwarranted and effective pain relief should be provided following guidelines established for the patient with terminal cancer. 30, 33 PSYCHIATRIC ISSUES IN THE CARE OF PATIENTS WITH AIDS In considering psychiatric issues in an individual diagnosed with AIDS, it is important to consider the social and psychologic implications of the diagnosis. It is well known that patients with AIDS are often stigmatized and subsequently experience social and emotional isolation. The source of this stigma appears to be multifaceted, and is partly attributable to characteristics of the disease and partly attributable to the characteristics of the groups that are most afflicted. These can be summarized as follows: 1. Because AIDS is a previously unknown and complex disease,
many well intentioned but uninformed individuals are confused about the risk of contracting the disease, and are frightened of and standoffish to people with AIDS. 2. AIDS is a venereal disease, and on the basis of early epidemiologic profiles, people with AIDS are still often seen as people who have engaged in frequent anonymous sexual activities and have ingested a variety of mind-altering drugs. 3. Historically, homosexual men have been stigmatized solely on the basis of the social bias against homosexuality that is prevalent in the United StatesY 4. AIDS is seen as a terminal disease. Each of these factors can contribute to an individual patient's sense of isolation, both because of the reactions of others and because of the patient's own feeling about these issues. For example, in a review of psychiatric consultations at San Francisco General Hospital, a commonly encountered theme among AIDS patients seen was that of patients experiencing their illness as retribution, and blaming themselves for their disease. Such patients experienced the greatest discomfort, requiring more support and psychotherapeutic intervention than others.1O It is also important to consider the natural history of the disease in assessing a patient's psycho logic responses to his illness. The natural history of AIDS is frequently marked by the intermittent development of illnesses not usually seen in the general population. Each new illness is a major psycho logic stressor in and of itself. Sometimes this intercurrent illness can
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only be treated symptomatically, leaving the patient with the need to cope with a regimen of medications, their side eflects, and any residual symptoms of the illness. This intermittent development of illnesses is most often progressive and additive, leading to both physical and emotional exha~stion. A second psycho logic stressor is that of coping with the knowledge that AIDS is a life-threatening illness. The individual with AIDS is a young adult, homosexual or bisexual man, faced with the sadness accompanying multiple losses-the loss of body control and physical stamina, the loss of cmployability, career, and income, and at times, the loss of significant relationships. In addition, many patients report fears of pain and dying. There is often a sense of betrayal and diffuse anger displayed, as has been described in patients with other severe illnesses, for example, cancers or burn patients.:16 Diagnostic Considerations The psychiatric aspects of AIDS have received relatively little attention in the literature despite the profound psychosocial implications of the disease. Two studies have published diagnostic information on psychiatric disorders in hospitalized patients with AIDS. IO • 41 One study reported that "depression" or "depression and/or anxiety" were the foremost reasons for consultation obtained on hospitalized AIDS patients.]() The second study presented findings on a retrospective chart review to determine the prevalence of psychiatric complications in AIDS. Twenty-one of 27 patients wcre diagnosed with organic mental syndrome with or without a major depression. 41 A recently reported controlled study of neurologic functioning in patients with AIDS and AIDS-related conditions reported that 50% of patients showed evidence of some cognitive impairment on formal testing. 48 Deficits included mental slowing, forgetfulness, and difficulty with severalstep tasks. The most common diagnosis, however, was an adjustment disorder with depressed and/or anxious features. The diagnosis of major depression in AIDS is problematic in that the somatic symptoms commonly used to make a diagnosis of depression can also result from the primary underlying disease process. Fatigue, weight loss, difficulty in sleeping, and anorexia are common symptoms used to diflerentiate a major depression from lesser forms but are also common complaints of patients with AIDS. How, then, does one differentiate whether these somatic symptoms are attributable to medical or psychologic causes? To determine the presence of a major depression, the clinician should begin by taking a careful and thorough history. Emphasis should be placed on cognitive/affective symptoms, while relying minimally on somatic concerns. The role of self-esteem as a useful discriminator of serious depression has been emphasized. 7 , 42 Seven other items from the Beck Depression Inventory have also been shown to be useful. These include: feeling like a failure, loss of interest in people, feeling punished, suicidal idcation, dissatisfaction, difficulty with decisions, and crying, The first four of these occurred only at high levels of depression, and thus, their presence should particularly alert primary-care givers to the possibility of marked depression, Similarly, a history of major depression requiring either hospitalization, previous antidepressant therapy, or prior history of suicide
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attempts should be a flag to the clinician that the patient is at high risk for psychiatric morbidity. Of note, while suicidal ideation is common among AIDS patients, repeated discussions of suicide should be considered a request for help and the patient should be referred for consultation. Individuals with such a history or displaying the symptoms noted above should also be referred for psychiatric consultation and management. The other major diagnostic group is composed of those suffering from organic mental syndrome. As neuropsychiatric symptoms can overlap between these categories, psychiatric consultation can be useful in differentiating between psychogenic and organic causes of an altered mental status. 25 Because it has become increasingly clear that AIDS patients suffer from a central nervous system infection by the AIDS retrovirus itself, this distinction becomes increasingly problematic. 15, 24, 47 It should be noted, however, that the unexplained onset of a depressive syndrome in a patient with AIDS may also herald the onset of other central nervous system infections and should not be overlooked or minimized. 9 Treatment Approaches When a patient with AIDS is felt by the clinician to fulfill criteria for a major depressive disorder, antidepressant medication is indicated. The antidepressant chosen should be one with the least anticholinergic activity possible. Two lines of reasoning converge to support this contention. First, many AIDS patients develop some degree of central nervous system dysfunction, and it is known that anticholinergic activity can exacerbate disorientation and memory difficulties, and can even produce a toxic psychosis. 11, 45 Second, the drying of mucous membranes by anticholinergic activity likely reduces the mechanical protection of the membranes offered by the secretions. There is a theoretic rationale for believing that drying can facilitate the growth of Candida and other opportunists commonly seen in AIDS patients. IS For both these reasons, antidepressants with little or no anticholinergic activity such as alprazolam (Xanax)14 or trazodone (Desyrel)16 are recommended. However, because of reports of reversible priapism in a small number of patients on trazodone,46 alprazolam appears to be the drug of choice. In patients with organic mental syndromes, agitation and psychotic phenomena are probably best treated with haloperidol (Haldol) or trifluoperazine (Stelazine). Both drugs have low anticholinergic activity. Haloperidol is probably the drug of choice, however, since it has only limited effects in lowering the seizure threshold 3 and very minimal potential for inducing hypotension. 6 The management of patients in either of these groups requiring psychoactive medication is optimally provided by the psychiatrist in consultation with the primary-care provider. In addition to possible need for pharmacologic support, there are three general levels of care required by patients with AIDS who may be referred for psychiatric consultation. The first is for those recently diagnosed. Sometimes these patients, who may have had only a few symptoms prior to diagnosis, will ask to talk to someone. Sometimes they will be referred by the primary physician because of concern that the patient's reaction to the diagnosis is inappropriate-that is, the patient appears either emotion-
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ally overwhelmed or almost nonchalant. Such patients are best characterized as exhibiting a stress response syndrome. Once this is understood, the consultant can begin working with the patient while educating the primary physician about the nature of this reaction. The diagnosis of AIDS can be an acutely traumatic event, although some patients, particularly those with long-standing AIDS-related conditions, may experience the diagnosis with relief. The types and patterns of psychologic responses to traumatic events described by Horowitz are applicable to what is seen in newly diagnosed patients with AIDS.23 When confronted with a traumatic event, an individual usually responds with an effective outcry or affective numbing ("emotional shutdown"). Unbidden thoughts or images spawned by the event intrude into the patient's awareness and keep him in a continual state of anxiety. Many AIDS patients report intrusive thoughts of suffering and death. Commonly, patients will vacillate among these states. It is important for the consultant to keep in mind that both of these initial reactions probably serve an adaptive function in helping the individual fend off too painful affects, while moving toward what Lindemann has called affective completion. 31 Affective completion may be thought of as a state of relative psychologic calm in which the patient is able to shift his focus of attention at will, demonstrating the ability to discuss his illness when desired without becoming emotionally overwhelmed, as well as being able to focus his attention elsewhere without being intruded upon by thoughts of his illness. Once affective integration of the diagnosis occurs, at least partial control of the acute anxiety and dysphoria is achieved. The patient's focus now turns to other issues. The need for education about the illness and the possible reactions he may encounter from others, how and what to tell family members, friends, and employers, the need for ongoing emotional support, and financial planning are all at the forefront. Assertiveness training may be helpful in providing the patient with skills to secure help and support from others. Decisions regarding the use of free time and staving off boredom are issues for many, as they are either unable or not allowed to continue employment. Concerns regarding infectious contamination of others, in terms of both living arrangements and possibly continued sexual activity, are common and need to be addressed. A frank discussion about alternative approaches to sexuality that do not involve the exchange of body fluids (for example, mutual masturbation, the use of condoms, the use of erotica) is helpful. Feelings of guilt or self-blame need to be addressed and explored. Connections between sexual orientation and the illness should be actively challenged, pointing out the existence of the disease in other groups and discussing the difference between association and causation. In addition, support of psychologic defenses such as altruism and denial is also useful during this early period. Encouraging the patient to become involved in altruistic activities is helpful, as this involvement enhances selfesteem and provides a meaningful outlet for the patient's remaining energies. Self-help groups, political action groups, or involvement in research projects are examples of altruistic activities. Supporting denial may also be adaptive. Earlier writers have found that patients facing terminal illness who are successful "deniers" not only lower their anxiety and raise their hopes, but also survive significantly
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10nger. 2o , 21, 52 (Note: A successful "denier" may also be thought of as one who "accepts" his illness.) While acknowledging the seriousness of the illness, the consultant can facilitate this process by communicating his or her belief that the patient can recuperate to a level of functioning that will allow him to continue to be productive. Empathically pointing out others who have continued to engage in meaningful activity is often helpful, giving the patient hope and countering the idea that with his diagnosis life is over. If permission can be obtained from both parties, arranging a meeting between those successfully managing their illness with those newly diagnosed can be extremely helpful. Thus, individuals who acknowledge their disease, comply with medical treatment, and are able to accommodate to their illness while maintaining an active life seem to cope most effectively. Other important treatment strategies for this early group include relaxation training, hypnosis, and visualization. Visualization is a process of guided imagery in which the patient learns to see himself as healthy and disease-free. Many patients find that these skills both give them a greater sense of being in control (turning passive into active) and are helpful in reducing anxiety. For patients at a midstage in the disease process (for example, those hospitalized with a second bout of P. carinii pneumonia) the focus of treatment often begins to change. Loss of hope and emotional exhaustion are often encountered. The ability of the patient to continue denying his illness is lessened, and frequently he begins to engage in more detailed grief work. The consultant encourages ventilation of feeling as the patient anticipates and mourns the multiple losses of important people and objects. Frequently, the patient begins a life review, at times focusing on a particular problematic relationship or experience. Sometimes he seeks encouragement to deal with a particularly troublesome issue in his life as he begins to think more specifically about death and dying. He may desire to discuss issues related to extent of treatment-wishes regarding intubation, resuscitation, and so forth. He may need to write a will, as well as consider appointing someone with power of attorney should he become unable to make decisions for himself. He may want to begin discussing plans for a funeral or a memorial service. The consultant should encourage and support this process, taking his cues from the patient and communicating to him that these are not frightful or morbid topics and that it is useful to explore them. He should also provide support to family members, friends, and lovers. The final group of AIDS patients that the psychiatric consultant may be asked to see are those admitted for terminal care. In these cases, treatment is supportive and often involves working with the family, friends, and lovers, as well as with the patient. Treatment consists largely of reassuring the patient that he will not be abandoned and that he will be given adequate pain medication. The use of antidepressants as an adjunct to pain management is sometimes helpful. Often, the patient will begin to withdraw emotional investment in others as he begins to turn away from the living and focus more on himself and his approaching death. Understanding this as a common development and communicating this to family, friends, and lovers can often be very comforting to them. Furthermore, the patient is often relieved by the opportunity to discuss his fears and concerns about dying. He is encouraged to take care of any business he
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feels is left to finish, is supported in his decisions regarding treatment, and ultimately may be given permission to let go of life with the understanding that the consultant will do all he can to see that the patient's wishes are followed after his death. -
COMMUNITY-BASED PSYCHOSOCIAL SUPPORT In addition to the routine care and psychologic support provided by medical professionals, the AIDS patient in San Francisco may avail himself of the services of a community-based organization providing comprehensive support. Founded in 1974, the Shanti Project was organized as a volunteer organization to provide nondirective peer support, advocacy, and companionship for patients with terminal illnesses. The original goal was to decrease the feelings of isolation and to foster the hope and strength needed for the patient and their loved ones to face and manage an often overwhelming situation. Since the advent of the AIDS epidemic in San Francisco in 1981, the Shanti Project has focused its energy on persons with AIDS. Approximately 80% of the 1100 persons with AIDS in San Francisco have utilized one or more of the current Shanti programs. In an effort to meet the rapidly increasing numbers of AIDS clients, the Shanti Project has grown from a volunteer body of 60 to a current total of 204 emotional support volunteers and 67 practical support volunteers. Persons with AIDS are active board members and participate in training Shanti volunteers. The Shanti Project has been mandated by the City of San Francisco as the organization to provide psychosocial services to persons with AIDS and their families, friends, and loved ones. Shanti's major source of funding comes from a contract with the City and County of San Francisco, supplemented by individuals and private foundations. In addition to the emotional support program, Shanti has a practical support program, a residence program, and a counseling program at San Francisco General Hospital. Emotional Support Program This volunteer counseling program provides free individual and group support to persons with AIDS and their families, friends, and loved ones. An individual's reactions to life-threatening illness and grief are viewed as legitimate human responses, rather than as "abnormal" or "pathologic." After being interviewed and screened, volunteers undergo a 40-hour training, in which they learn to respond to a wide range of emotions as well as to put aside any agendas about how clients should deal with their illness or grief. Shanti believes that when people are given unconditional support and caring, they become empowered to live with their illness in a way that is best far them. Volunteers are often assigned to a client shortly after their diagnosis and accompany them through the entire course of the illness. Emotional support volunteers make a commitment of 6 hours a week for 6 months. Two of these hours are spent in a mandatory weekly support and supervision group led by experienced and specially trained volunteers. These groups are considered essential in preventing "burnout," and as a result many volunteers remain in the project longer than 6 months.
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Many clients attend support groups in addition to or in place of individual counseling. In these self-help groups, the patient not only derives support from the group, but is also given the opportunity to be of help to others. This fosters self-esteem as well as confronting the patient's view of himself as helpless. The group also serves to reduce social isolation and encourage socialization and interaction among the members. Clients often come to the first group meeting feeling alone. Many subsequently form meaningful ongoing friendships. There are support groups for persons with AIDS, anticipatory grief groups, and a bereavement group. Each group is cofacilitated by a Shanti staff member and an experienced volunteer. Practical Support Program This program developed from the realization that often basic everyday needs of clients were not being met. Practical support volunteers assist patients in a variety of ways, including grocery shopping, meal preparation, laundry, banking, moving, and cleaning. In addition, several practical support volunteers staff the AIDS Outpatient Clinic at San Francisco General Hospital, assisting with transporting patients and running errands. The Shanti Project owns and operates a van to transport people with AIDS to and from clinic appointments. This service is equipped to provide services to ambulatory people in nonemergent situations. Modeled on the emotional support program, practical support volunteers undergo a 20-hour training and make a commitment of 6 hours per week for 6 months. The trainings include a medical overview of AIDS, instructions on moving people in and out of bed, feeding people in bed, changing sheets, and cleaning bedridden people. Volunteers are presented a panel session by persons with AIDS and participate in role playing and exercises in exploring their feelings and fears about grief and death. After the training, volunteers attend 2-hour support and supervision groups every 2 weeks. The goal of this program is to enable patients to live with dignity, having their survival needs met at home. Residence Program The impetus for this program came from the fact that people with AIDS were being displaced from their homes due to fearful landlords and roommates or financial crises. The purpose of the Residence Program is to provide low-cost, permanent, stable, and supportive housing to San Francisco residents with AIDS. The locations of the residences are kept confidential to protect privacy. The cost is 25% of a person's income plus $5.00 a month. The Residence Program pays the utilities and maintains the houses. There are currently seven houses or apartments housing 28 people with AIDS. In the past 2 years, over 80 persons with AIDS have lived in the residences. Designed as an independent and cooperative living situation, each resident has their own bedroom and shares the kitchen, living room, and bathroom facilities. Where only the residents permanently reside in the homes, practical support volunteers and a Shanti staff member weekly clean the residences. When persons living in the houses become unable to care for themselves independently, referrals are made to the Practical Support Program and/or licensed home care agencies such as a hospice for nursing and attendant care. By carefully planning and coordi-
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nating services, patients are able to remain at home through the terminal stages of their illness. Hospital-Based Counseling Program The Shanti Project's counseling program at San Francisco General Hospital was initiated in the AIDS Clinic through the impetus of a patient who became concerned about fellow patients sitting in the waiting room, alone and afraid, awaiting a diagnosis and watching others with advanced disease. A Shanti Project counselor was hired to provide support services for AIDS outpatients. From an initial 3 hours a week, the position quickly expanded to 26 hours weekly and became funded through a contract with the City of San Francisco. The counselor provides support and referrals for people awaiting diagnoses, newly diagnosed patients, patients with deteriorating conditions, and families and friends. There are currently over 100 patient visits per month with Shanti counselors through the outpatient clinic. In addition to the outpatient services, two counselors staff the AIDS inpatient facility at San Francisco General Hospital, providing support, patient advocacy, information, and referrals for legal, religious, financial, housing, and funeral needs 7 days a week. Hospital-based counselors are selected from the Shanti Project's volunteer body. They receive additional training in medical, ethical, and legal issues, addressing life-support and resuscitation, in-depth psychosocial assessment, and referral making. These counselors are also available to provide support and consultation for the nurses, physicians, and other hospital staff. SUMMARY Due to the magnitude of the AIDS epidemic in San Francisco, centralization of services has been essential for providing maximal patient care and support, and allowing for efficient performance of clinical investigation. \Vhile other locales with fewer numbers of documented cases may not have the need for such extensive organization, lessons can be adopted from the San Francisco experience. It is never an easy task to provide routine medical care and psychosocial support for a young patient with an ultimately fatal illness. Close cooperation of the medical establishment and the community at large, with governmental assistance and support, facilitates this difficult undertaking. REFERENCES 1. Abrams, D. I.: Lymphadenopathy syndrome in male homosexuals. In Gallin, J. I., and Fauci, A. J. (eds.): Advances in Host Defense Mechanisms. Volume 5, New York, Raven Press, 1985, p. 75. 2. Alien, J. R.: Epidemiology of the acquired immunodeficiency syndrome (AIDS) in the United States. Semin. Onco!., 11 :4, 1984. 3. Bernstein, J. G.: Chemotherapy in psychiatry. In Hackett, T. P., and Cassem, N. H. (eds.): \1assachusetts General Hospital Handbook of General Hospital Psychiatry. St. Louis, C. v. Mosby Co., 1978. 4. Blum, 1. W., Chambers, R. A., Schwartzman, R. J., et a!.: Progressive multifocal leukoencephalopathy in acquired immune deficiency syndrome. Arch. Neuro!., 42:137, 1985.
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5. Britton, C. B., and Miller, J. R.: :-.Jeurologic complications in acquired immunodeficiency syndrome (AIDS). I\'eurol. Clin., 2:315, 1984. 6. Byck, R.: Drugs and the treatment of psychiatric disorders In Goodman, 1. S., and Gilman, A. (eds.): The Pharmacologic Basis of Therapeutics. :-.Jew York, The .\1cMillan Co., 1975. 7. Cavanaugh, S., Clark, D., and Gibbons, R.: Diagnosing depression in the hospitalized medically ill. Psychosomatics, 24:809, 1983. 8. Dergatis, L. R., Morrow, G. R., Fetting, J., et a!.: The prevalence of psychiatric disorders among cancer patients. J.A.M.A., 249:751, 1983. 9. Dilley, J. W., and Macks, J.: Secondary depression in patients with AIDS. Manuscript in preparation. 10. Dilley, J. W., Ochitill, H. 1\'., Perl, M., et a!.: Findings in psychiatric consultations with patients with AIDS. Am. J. Psychiatry, 142:82, 1985. 11. Drachman, D. A., and Leavitt, J. B.: Human memory and the cholinergic system. Arch. I\'eurol., 30:113, 1974. 12. Fauci, A. S., Macher, A. M., Longo, D. L., et a!.: Acquired immunodeficiency syndrome: Epidemiologic, clinical, immunologic, and therapeutic considerations. Ann. Intern. Med., 100:92, 1984. 13. Fauci, A. S., Masur, H., Gelmann, E. P., et al.: The acquired immunodeficiency syndrome: An update. Ann. Intern. Med., 102:800, 1985. 14. Feighner, J. P., Aden, G. C., Fabre, 1. F., et a!.: Comparison ofalprazolam, imipramine and placebo in the treatment of depression. J.A. M.A., 249:3057, 1983. 15. Gajdusek, D. C., Gibbs, C. J., Epstein, 1. G., et a!.: Retrovirus HTLV-III identified in the brains of patients with AIDS encephalopathy by transmission to chimpanzees. (abstract) In Proceedings of the International Conference on AIDS. Atlanta, 198.5, p. 69. 16. Gershin, S., and I\'ewton, R.: Lack of anti-cholinergic side effects of a new anti-depressant: Trazodone. J. Clin. Psychiatry, 41:100, 1980. 17. Gottlieb, M. S., Groopman, J. E., Weinstein, W. M., et a!.: The acquired immunodeficiency syndrome. Ann. Intern. Med., 99:208, 1983. 18. Gottlieb, M. S., Schroff, R., Schanker, H. M., et al.: Pneumocystis carinii pneumonia and mucosal candidiasis in previously healthy homosexual men: Evidence of a new acquired cellular immunodeficiency. N. Engl. J. Med., 305:1425, 1981. 19. Groopman, J. E., Mayer, K. R., Sarngadharan, M. G., et al.: Seroepidemiology of human T-Iymphotropic virus type III among homosexual men with the acquired immunodeficiency syndrome or generalized lymphadenopathy and among asymptomatic controls ill Boston. Ann. Intern. Med., 102:334, 1985. 20. Hackett, T. P., and Cassem, N. H.: Psychological reactions to life-threatening illness. In Abram, R. (ed.): Psychological Aspects of Stress. Springfield, Ill., Charles C Thomas, 1970. 21. Rackett, T. P., and Weisman, A. D.: Denial as a social factor in patients with heart disease and cancer. Ann. :-.J. Y. Acad. Sci., 164:802, 1969. 22. Hardy, A. M., Alien, J. R., Morgan, W. M., et al.: The incidence rate of acquired immunodeficiency syndrome in selected populations. J.A. M.A., 253:215, 198.5. 23. Horowitz, M. J.: Stress Hesponse Syndrome. New York, Jason Aronson Inc., 1976. 24. Jordan, B., I\'avia, B. A., Cho, F., et a!.: Neurological complications of AIDS: An overview based on 110 autopsied patients. (abstract) In Proceedings of the International Conference on AIDS. Atlanta, 1985, p. 49. 25. Kiloh, 1. G.: Pseudo-dementia. Acta Psychiatr. Scand., 37:336, 1961. 26. Krigel, H., Ostreicher, R., LaFleur, F., et al.: Epidemic Kaposi's sarcoma (EKS): Identification of a subset of patients with a good prognosis. Proc. Am. Soc. Clin. Oncol., 4:4, 1985. 27. Larsen, K. S., Reed, M., and Hoffman, S.: Attitudes ofheterosexuals toward homosexuality. J. Sex Hes., 16:245, 1980. 28. Laurence, J., Brun-Vezinet, F., Schutzer, S. E., et al.: Lymphadenopathy-associated viral antibody in AIDS. N. Engl. J. Med., 311:1269, 1984.
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29. Levy, R. M., Bredesen, D. E., and Rosenblum, M. L.: Neurological manifestations of the acquired immunodeficiency syndrome (AIDS): Experience at UCSF and review of the literature. J. Neurosurg., 62:475, 1985. 30. Lewis, B. J.: Supportive care of the cancer patient, management of pain: Pharm~cologic approaches. In DeVita, V. T., Hellman, S., and Rosenberg, S. (eds.): Cancer: Principles and Practice of Oncology. Philadelphia, J. B. Lippincott, 1982. 31. Lindemann, E.: Symptomatology and management of acute grief. Am. J. Psychiatry, 101: 141, 1944. 32. Luft, B. J., Brooks, R. B., Conley, F. K., et aI.: Toxoplasmic encephalitis in patients with acquired immune deficiency syndrome. J.A.M.A., 252:913, 1984. 33. McGivney, W. T., and Crooks, G. M.: The care of patients with severe chronic pain in terminal illness. J.A.M.A., 251:1182, 1984. 34. Mess, T. P., Hadley, W. K., and Wofsy, C. B.: Bacteremia due to Mycobacterium tuberculosis (MTB) and Mycobacterium avium intracellulare (MAl) in homosexual males. In Proceedings of the International Conference on AIDS. Atlanta, 1985, p. 47. 35. Mitsuyasu, R., Afrasiabi, R., Taylor, J., et aI.: Immunologic prognostic variable in patients with AIDS and Kaposi's sarcoma (KS). (abstract) Proc. Am. Soc. Clin. OncoI., 4:1, 1985. 36. Moos, R. (ed.): Coping With Physical Illness. New York, Plenum, 1977. 37. Moss, A. R., Abrams, D., Conant, M., et aI.: Incidence of the acquired immunodeficiency syndrome in San Francisco. Front. Radiat. Ther. OncoI., 19:14, 1984. 38. Moss, A. R., Bacchetti, P., Osmond, D., et aI.: Incidence of the acquired immunodeficiency syndrome in San Francisco. J. Infect. Dis., 152:152-161, 1985. 39. Moss, A. R., McCallum, G., Volberding, P. A., et al.: Mortality associated with mode of presentation in the acquired immune deficiency syndrome. J.N.C.I., 73:1281, 1984. 40. Nielsen, S. L., Petito, C. K., Urmacher, C. D., et al.: Subacute encephalitis in acquired immune deficiency syndrome: A postmortem study. Am. J. Clin. PathoI., 82:678, 1984. 41. Perry, S. W., and Tross, S.: Psychiatric problems of AIDS inpatients at the New York Hospital: Preliminary report. Public Health Rep., 99:200, 1984. 42. Plumb, M., and Holland, J.: Comparative studies of psychological function in patients with advanced cancer: 1. Self-reported depressive symptoms. Psychosom. Med., 39:264, 1977. 43. Rosen, R. S.: The acquired immunodeficiency syndrome (AIDS). J. Clin. Invest., 75:1, 1985. 44. Salahuddin, S. Z., Groopman, J. E., Markham, P. D., et al.: HTLV-III in symptom-free seronegative persons. Lancet, 2:418, 1984. 45. Scher, M.: Trazodone and priapism. Am. J. Psychiatry, 140:1362, 1983. 46. Shader, R., and DiMascio, A.: Psychotropic Drug Side Effects, Clinical and Theoretical Perspectives. Baltimore, William & Wilkins Press, 1970. 47. Shaw, G. M., Harper, M. E., Hahn, M., et al.: HTLV-III infection in brains of children and adults with encephalopathy. Science, 227:177, 1985. 48. Tross, S., Holland, J., Wetzler, S., et al.: Psychological and neuropsychological function in AIDS spectrum disorder patients. (abstract) In Proceedings of the International Conference on AIDS. Atlanta, 1985, p. 67. 49. Valle, S.-L., Saxinger, C., Ranki, A., et aI.: Diversity of clinical spectrum of HTLV-III infection. Lancet, 1 :301, 1985. 50. Volberding, P. A.: The clinical spectrum of AIDS-implications for comprehensive patient care. Ann. Intern. Med., 103:729-733, 1985. 51. Wachter, R. M., Luce, J. M., Turner, J., et al.: AIDS patients admitted to the intensive care unit: Outcome and changing patterns of utilization. Am. Rev. Respir. Dis., in press. 52. Weisman, A. D., and Hackett, T. P.: Denial as a social act. In Levin, S., and Kahana, R. (eds.): Creativity, Reminiscing and Dying. New York, International Universities Press, 1966.
Assistant Director, AIDSiKS Clinic San Francisco General Hospital Building 80, Ward 84 995 Potrero Avenue San Francisco, CA 94110
in the Male Homosexual
0025-7125/86 $0.00
+ .20
Routine Care and Psychosocial Support of the Patient With the Acquired Immunodeficiency Syndrome Donald 1. Abrams, M.D.,* James W. Dilley, M.D.,t Linda M. Maxey, R.N.,:j: and Paul A. Volberding, M.D.§
INTRODUCTION When the AIDS Outpatient Clinic and Ward were established at San Francisco General Hospital in 1983, epidemiologists and statisticians were forecasting a future epidemic of unimaginable magnitude. By mid-1985, over two new cases of acquired immunodeficiency syndrome (AIDS) were diagnosed each day in the city. As of January 1, 1985, there was an average of one death a day from AIDS in San Francisco. The foresight involved in anticipating this dilemma by the creation of centralized care facilitie~ has yielded tangible benefits. Through the close cooperation of the City of San Francisco and the University of California, AIDS patient care and research activities at San Francisco General Hospital serve as a worldwide model system.·so The AIDS Clinic, beginning with one physician, two nurses, and an administrative secretary, has grown to a full-time staff of nearly 50 healthcare providers, epidemiologists, protocol managers, computer personnel, psychosocial support teams, and clerical workers. In mid-1985, the average census reached 1200 patient visits per month, reflecting health-care services provided to roughly 35% to 40% of AIDS cases alive in San Francisco and *Assistant Director, AIDS Activities, San Francisco General Hospital; and Assistant Clinical Professor of Medicine, Cancer Research Institute, University of California, San Francisco, School of Medicine, San Francisco, California t Assistant Clinical Professor, Department of Psychiatry, San Francisco General Hospital; and University of California, San Francisco, School of Medicine, San Francisco, California *Collnseling Coordinator, Department of Nursing, San Francisco General Hospital; and Shanti Project, San Francisco, California §Assistant Professor of Medicine, Cancer Research Institute, Universitv of California, San Francisco, School of Medicine; Chief, Medical Oncology, and Director, AIDS Activities, San Francisco General Hospital, San Francisco, California
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a substantial number of patients with AIDS-related conditions. Centralization of facilities in this manner has allowed for the development of expertise among the health-care professionals, all of whom are dedicated to providing top-quality care with compassion and sensitivity. It has also facilitated the implementation of well monitored, carefully controlled research protocols aimed at understanding the epidemiology, psychosocial response, and optimal treatment modalities available for combating this complex and devastating disease. Overcoming initial concerns over the creation of a "leper colony" ambiance, the 12-bed AIDS inpatient ward has developed into one of the model units at San Francisco General Hospital. Staffed by professionals who have voluntarily chosen to work on the ward, the nursing personnel has developed a degree of familiarity and expertise regarding hospital problems unique to the AIDS patient that enables them to serve as a valuable resource to medical house staff, off-unit nursing staff, and attending physicians. Patients hospitalized on the unit enjoy the spirit of comradery that prevails, as well as the on-site availability of psychosocial support services and frequent social distractions, complete with catered meals and entertainment, donated by members of the San Francisco community. Currently a 12-bed unit, the AIDS ward will soon double in capacity. Within the first 6 months of its inception, the success of the inpatient unit, in addition to the growing number of patients evaluated in the outpatient clinic, necessitated boarding of AIDS patients off of the specialty ward. Over the past year, the AIDS census of the llO-bed medical service at San Francisco General Hospital has ranged from 20 to 32 inpatients. Again, this concentration oflarge numbers of patients in a single setting not only serves to provide optimal care, but also facilitates clinical investigation. The demographics of the San Francisco AIDS epidemic are somewhat unique in that, to date, 98% of patients diagnosed have been homosexual or bisexual men. 22 , 37, 38 AIDS patients not employing the services of San Francisco General Hospital are cared for in the community by a score of physicians who have established themselves as expert in the problem and who have previously been identified as providing the bulk of health care to the local homosexual community. Patients are often referred to the AIDS Clinic for a one-time consultative visit or for participation in an outpatient experimental treatment protocol. An ongoing dialogue is maintained with the community physician regarding the progress of the patient on protocols, as well as the availability of new treatment programs. As much as possible, patients with established primary-care providers are encouraged to maintain their relation with their specified physician. Hospitalization for intercurrent opportunistic infection is encouraged at the admitting facility of the private doctor to ensure equitable distribution of cases among the numerous hospitals in the city, thereby allowing local staffs to gain the necessary firsthand experience that can only serve to alleviate fears and encourage highquality patient care. This article will focus on routine medical care and psychosocial support of the patient with an AIDS diagnosis. It has become obvious, however, that those who have been diagnosed with a malignancy or opportunistic infection meeting the Centers for Disease Control criteria constitute only
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the "tip of the iceberg." Infection with the AIDS retrovirus results in a spectrum of states ranging from the asymptomatic carrier or seropositive individual, through patients with often debilitating AIDS-related conditions, to those with bona fide AIDS. I, 2, 19, 28, 44, 49 Although focusing on the last group, this article will also highlight some of the peculiar concerns relevant to care and support of those constituting the base of the AIDS "iceberg." ROUTINE CARE OF THE AIDS PATIENT AIDS is a constellation of a multitude of disparate disease processes unified by a common thread of severe acquired immune dysfunction. 12, 13, 43 The treatment currently available for the malignancies and opportunistic infections associated with AIDS has been reviewed in this issue. The routine care of the person with AIDS is complicated by the persistence of mystery and fear that shrouds the epidemic, permeating throughout society to reach even the most enlightened of health-care providers. Guidelines for routine care are also confounded by the wide variation in pace of progression observed among individuals within the same category of disease diagnosis. Some patients with Kaposi's sarcoma, for example, may remain essentially well with relatively indolent disease for years with or without therapeutic intervention. 26 , 35, 50 Others may rapidly develop a complicating opportunistic infection and begin a brisk downhill course. An apparent certainty, however, remains that an AIDS diagnosis is currently accompanied by an ensurance of death within 2 years. 39 With this ultimately fatal prognosis, the provision of routine care can be divided into two phases. In the early stage following an AIDS diagnosis, the provider should encourage standard practices of health maintenance and should be on guard for early warnings of significant changes in clinical condition. For the patient approaching death, ensurance of physical comfort and avoidance of a sense of rejection and isolation are paramount considerations. Early-Stage Routine Care The average age of the AIDS patient in San Francisco is 35 years.:J8 For the young man in the prime of his life with newly diagnosed Kaposi's sarc~ma or just discharged following therapy for an episode of Pneumocystis carinii pneumonia, acceptance of his own mortality is frequently sublimated. Patients most often are hopeful that through manipulation of life-style factors, they may be able to "beat the odds" and become "one of the survivors." Patients in this situation are encouraged to adopt programs of adequate rest, balanced nutritional intake, vitamin supplementation, tolerable exercise programs, and restriction of nonessential alcohol and recreational drug intake in conjunction with any primary disease therapy or experimental protocol in which they may be participating. Elimination of exogenous stress often includes terminating employment and accepting disability. For many patients, especially those in the "honeymoon period" following treatment of a first episode of Pneumocystis pneumonia, the months following an AIDS diagnosis may be experienced as some of the more healthful of their lives due to such life-style modifications.
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Physicians should monitor patients monthly for changes in clinical condition or laboratory parameters that may suggest an impending deterioration. Development of more severe constitutional symptoms, deterioration in hematologic values, or a rising erythrocyte sedimentation rat~, with or without specific organ system complaints, may herald the development of an opportunistic infection. If such changes in clinical condition or laboratory parameters occur, additional organ-specific tests or a general work-up including chest x-ray, pulmonary function tests, total-body gallium scanning, computed tomc6raphy of head or abdomen, and/or bone marrow aspirate with culture and biopsy may be warranted. Serum cryptococcal antigen titer may indicate the presence of occult cryptococcal meningitis or sepsis in the absence of central nervous system findings. Serum titers for Toxoplasma do not routinely correlate with the presence of central nervous system lesions. 32 In evaluating fever in the ambulatory non debilitated AIDS patient, the unorthodox procedure of obtaining outpatient blood cultures has been useful. Patients will rarely be found to have a bacterial process. More frequently, the studies will yield positive results on fungal or mycobacterial culture. 34 If no source of fever can be discovered, patients often obtain symptomatic relief from institution of therapy with acetaminophen or a nonsteroidal anti-inflammatory agent. Although there has been no conclusive evidence that early diagnosis and therapeutic intervention actually improve the survival for any of the AIDS-associated infections or malignancies, attentive evaluation of the patient's complaint relieves an often perceived sense of hopelessness and helplessness of the physician in combating the ultimate outcome of their disease. Many patients in this phase focus their energy on keeping intact and strong so that they might be able to benefit from "the miracle cure," often perceived as being just a few months away. Late-Stage Routine Care The goals of care for the patient with preterminal disease revolve around maintaining patient comfort and ensuring that the patient has finalized his worldly affairs. Discussions regarding the patient's attitudes toward cardiopulmonary resuscitation are mandatory should the patient be admitted to the hospital during the terminal phase. Through sensitive counseling, knowledge of the natural history of AIDS, and a desire to achieve a "death with dignity," most patients choose a "no code" status at our institution. Despite a marked increase in hospital bed utilization by AIDS patients at San Francisco General Hospital over the past years, intensive care unit days have decreased for this population. 51 A large percentage of AIDS patients choose to remain at home during the final days of their illness. This has been greatly facilitated by the outstanding contribution of the Visiting Nurse Association and the Hospice of San Francisco AIDS Unit. In addition to initiating discussions regarding resuscitation with the patient, preferably long before the need arises, the physician should also explore the patient's preparedness regarding termination of his affairs. Preparation of a will is encouraged. Many AIDS patients experience a
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debilitating dementia terminally. 4, 5, 29, 40, 47 Destructive central nervous system pathology or delirium secondary to fever or metabolic derangements may cloud the sensorium in the final days. Where available, patients should be counseled regarding appointing someone to represent them with durable power of attorney to ensure that their wishes are heeded. In addition to the frequent presence of substantial psychologic pain, the dying AIDS patient must often endure severe physical pain, often neurogenic in origin. Liberal use of analgesics and sedatives should be employed in this situation. Fear of narcotic addiction is unwarranted and effective pain relief should be provided following guidelines established for the patient with terminal cancer. 30, 33 PSYCHIATRIC ISSUES IN THE CARE OF PATIENTS WITH AIDS In considering psychiatric issues in an individual diagnosed with AIDS, it is important to consider the social and psychologic implications of the diagnosis. It is well known that patients with AIDS are often stigmatized and subsequently experience social and emotional isolation. The source of this stigma appears to be multifaceted, and is partly attributable to characteristics of the disease and partly attributable to the characteristics of the groups that are most afflicted. These can be summarized as follows: 1. Because AIDS is a previously unknown and complex disease,
many well intentioned but uninformed individuals are confused about the risk of contracting the disease, and are frightened of and standoffish to people with AIDS. 2. AIDS is a venereal disease, and on the basis of early epidemiologic profiles, people with AIDS are still often seen as people who have engaged in frequent anonymous sexual activities and have ingested a variety of mind-altering drugs. 3. Historically, homosexual men have been stigmatized solely on the basis of the social bias against homosexuality that is prevalent in the United StatesY 4. AIDS is seen as a terminal disease. Each of these factors can contribute to an individual patient's sense of isolation, both because of the reactions of others and because of the patient's own feeling about these issues. For example, in a review of psychiatric consultations at San Francisco General Hospital, a commonly encountered theme among AIDS patients seen was that of patients experiencing their illness as retribution, and blaming themselves for their disease. Such patients experienced the greatest discomfort, requiring more support and psychotherapeutic intervention than others.1O It is also important to consider the natural history of the disease in assessing a patient's psycho logic responses to his illness. The natural history of AIDS is frequently marked by the intermittent development of illnesses not usually seen in the general population. Each new illness is a major psycho logic stressor in and of itself. Sometimes this intercurrent illness can
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only be treated symptomatically, leaving the patient with the need to cope with a regimen of medications, their side eflects, and any residual symptoms of the illness. This intermittent development of illnesses is most often progressive and additive, leading to both physical and emotional exha~stion. A second psycho logic stressor is that of coping with the knowledge that AIDS is a life-threatening illness. The individual with AIDS is a young adult, homosexual or bisexual man, faced with the sadness accompanying multiple losses-the loss of body control and physical stamina, the loss of cmployability, career, and income, and at times, the loss of significant relationships. In addition, many patients report fears of pain and dying. There is often a sense of betrayal and diffuse anger displayed, as has been described in patients with other severe illnesses, for example, cancers or burn patients.:16 Diagnostic Considerations The psychiatric aspects of AIDS have received relatively little attention in the literature despite the profound psychosocial implications of the disease. Two studies have published diagnostic information on psychiatric disorders in hospitalized patients with AIDS. IO • 41 One study reported that "depression" or "depression and/or anxiety" were the foremost reasons for consultation obtained on hospitalized AIDS patients.]() The second study presented findings on a retrospective chart review to determine the prevalence of psychiatric complications in AIDS. Twenty-one of 27 patients wcre diagnosed with organic mental syndrome with or without a major depression. 41 A recently reported controlled study of neurologic functioning in patients with AIDS and AIDS-related conditions reported that 50% of patients showed evidence of some cognitive impairment on formal testing. 48 Deficits included mental slowing, forgetfulness, and difficulty with severalstep tasks. The most common diagnosis, however, was an adjustment disorder with depressed and/or anxious features. The diagnosis of major depression in AIDS is problematic in that the somatic symptoms commonly used to make a diagnosis of depression can also result from the primary underlying disease process. Fatigue, weight loss, difficulty in sleeping, and anorexia are common symptoms used to diflerentiate a major depression from lesser forms but are also common complaints of patients with AIDS. How, then, does one differentiate whether these somatic symptoms are attributable to medical or psychologic causes? To determine the presence of a major depression, the clinician should begin by taking a careful and thorough history. Emphasis should be placed on cognitive/affective symptoms, while relying minimally on somatic concerns. The role of self-esteem as a useful discriminator of serious depression has been emphasized. 7 , 42 Seven other items from the Beck Depression Inventory have also been shown to be useful. These include: feeling like a failure, loss of interest in people, feeling punished, suicidal idcation, dissatisfaction, difficulty with decisions, and crying, The first four of these occurred only at high levels of depression, and thus, their presence should particularly alert primary-care givers to the possibility of marked depression, Similarly, a history of major depression requiring either hospitalization, previous antidepressant therapy, or prior history of suicide
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attempts should be a flag to the clinician that the patient is at high risk for psychiatric morbidity. Of note, while suicidal ideation is common among AIDS patients, repeated discussions of suicide should be considered a request for help and the patient should be referred for consultation. Individuals with such a history or displaying the symptoms noted above should also be referred for psychiatric consultation and management. The other major diagnostic group is composed of those suffering from organic mental syndrome. As neuropsychiatric symptoms can overlap between these categories, psychiatric consultation can be useful in differentiating between psychogenic and organic causes of an altered mental status. 25 Because it has become increasingly clear that AIDS patients suffer from a central nervous system infection by the AIDS retrovirus itself, this distinction becomes increasingly problematic. 15, 24, 47 It should be noted, however, that the unexplained onset of a depressive syndrome in a patient with AIDS may also herald the onset of other central nervous system infections and should not be overlooked or minimized. 9 Treatment Approaches When a patient with AIDS is felt by the clinician to fulfill criteria for a major depressive disorder, antidepressant medication is indicated. The antidepressant chosen should be one with the least anticholinergic activity possible. Two lines of reasoning converge to support this contention. First, many AIDS patients develop some degree of central nervous system dysfunction, and it is known that anticholinergic activity can exacerbate disorientation and memory difficulties, and can even produce a toxic psychosis. 11, 45 Second, the drying of mucous membranes by anticholinergic activity likely reduces the mechanical protection of the membranes offered by the secretions. There is a theoretic rationale for believing that drying can facilitate the growth of Candida and other opportunists commonly seen in AIDS patients. IS For both these reasons, antidepressants with little or no anticholinergic activity such as alprazolam (Xanax)14 or trazodone (Desyrel)16 are recommended. However, because of reports of reversible priapism in a small number of patients on trazodone,46 alprazolam appears to be the drug of choice. In patients with organic mental syndromes, agitation and psychotic phenomena are probably best treated with haloperidol (Haldol) or trifluoperazine (Stelazine). Both drugs have low anticholinergic activity. Haloperidol is probably the drug of choice, however, since it has only limited effects in lowering the seizure threshold 3 and very minimal potential for inducing hypotension. 6 The management of patients in either of these groups requiring psychoactive medication is optimally provided by the psychiatrist in consultation with the primary-care provider. In addition to possible need for pharmacologic support, there are three general levels of care required by patients with AIDS who may be referred for psychiatric consultation. The first is for those recently diagnosed. Sometimes these patients, who may have had only a few symptoms prior to diagnosis, will ask to talk to someone. Sometimes they will be referred by the primary physician because of concern that the patient's reaction to the diagnosis is inappropriate-that is, the patient appears either emotion-
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ally overwhelmed or almost nonchalant. Such patients are best characterized as exhibiting a stress response syndrome. Once this is understood, the consultant can begin working with the patient while educating the primary physician about the nature of this reaction. The diagnosis of AIDS can be an acutely traumatic event, although some patients, particularly those with long-standing AIDS-related conditions, may experience the diagnosis with relief. The types and patterns of psychologic responses to traumatic events described by Horowitz are applicable to what is seen in newly diagnosed patients with AIDS.23 When confronted with a traumatic event, an individual usually responds with an effective outcry or affective numbing ("emotional shutdown"). Unbidden thoughts or images spawned by the event intrude into the patient's awareness and keep him in a continual state of anxiety. Many AIDS patients report intrusive thoughts of suffering and death. Commonly, patients will vacillate among these states. It is important for the consultant to keep in mind that both of these initial reactions probably serve an adaptive function in helping the individual fend off too painful affects, while moving toward what Lindemann has called affective completion. 31 Affective completion may be thought of as a state of relative psychologic calm in which the patient is able to shift his focus of attention at will, demonstrating the ability to discuss his illness when desired without becoming emotionally overwhelmed, as well as being able to focus his attention elsewhere without being intruded upon by thoughts of his illness. Once affective integration of the diagnosis occurs, at least partial control of the acute anxiety and dysphoria is achieved. The patient's focus now turns to other issues. The need for education about the illness and the possible reactions he may encounter from others, how and what to tell family members, friends, and employers, the need for ongoing emotional support, and financial planning are all at the forefront. Assertiveness training may be helpful in providing the patient with skills to secure help and support from others. Decisions regarding the use of free time and staving off boredom are issues for many, as they are either unable or not allowed to continue employment. Concerns regarding infectious contamination of others, in terms of both living arrangements and possibly continued sexual activity, are common and need to be addressed. A frank discussion about alternative approaches to sexuality that do not involve the exchange of body fluids (for example, mutual masturbation, the use of condoms, the use of erotica) is helpful. Feelings of guilt or self-blame need to be addressed and explored. Connections between sexual orientation and the illness should be actively challenged, pointing out the existence of the disease in other groups and discussing the difference between association and causation. In addition, support of psychologic defenses such as altruism and denial is also useful during this early period. Encouraging the patient to become involved in altruistic activities is helpful, as this involvement enhances selfesteem and provides a meaningful outlet for the patient's remaining energies. Self-help groups, political action groups, or involvement in research projects are examples of altruistic activities. Supporting denial may also be adaptive. Earlier writers have found that patients facing terminal illness who are successful "deniers" not only lower their anxiety and raise their hopes, but also survive significantly
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10nger. 2o , 21, 52 (Note: A successful "denier" may also be thought of as one who "accepts" his illness.) While acknowledging the seriousness of the illness, the consultant can facilitate this process by communicating his or her belief that the patient can recuperate to a level of functioning that will allow him to continue to be productive. Empathically pointing out others who have continued to engage in meaningful activity is often helpful, giving the patient hope and countering the idea that with his diagnosis life is over. If permission can be obtained from both parties, arranging a meeting between those successfully managing their illness with those newly diagnosed can be extremely helpful. Thus, individuals who acknowledge their disease, comply with medical treatment, and are able to accommodate to their illness while maintaining an active life seem to cope most effectively. Other important treatment strategies for this early group include relaxation training, hypnosis, and visualization. Visualization is a process of guided imagery in which the patient learns to see himself as healthy and disease-free. Many patients find that these skills both give them a greater sense of being in control (turning passive into active) and are helpful in reducing anxiety. For patients at a midstage in the disease process (for example, those hospitalized with a second bout of P. carinii pneumonia) the focus of treatment often begins to change. Loss of hope and emotional exhaustion are often encountered. The ability of the patient to continue denying his illness is lessened, and frequently he begins to engage in more detailed grief work. The consultant encourages ventilation of feeling as the patient anticipates and mourns the multiple losses of important people and objects. Frequently, the patient begins a life review, at times focusing on a particular problematic relationship or experience. Sometimes he seeks encouragement to deal with a particularly troublesome issue in his life as he begins to think more specifically about death and dying. He may desire to discuss issues related to extent of treatment-wishes regarding intubation, resuscitation, and so forth. He may need to write a will, as well as consider appointing someone with power of attorney should he become unable to make decisions for himself. He may want to begin discussing plans for a funeral or a memorial service. The consultant should encourage and support this process, taking his cues from the patient and communicating to him that these are not frightful or morbid topics and that it is useful to explore them. He should also provide support to family members, friends, and lovers. The final group of AIDS patients that the psychiatric consultant may be asked to see are those admitted for terminal care. In these cases, treatment is supportive and often involves working with the family, friends, and lovers, as well as with the patient. Treatment consists largely of reassuring the patient that he will not be abandoned and that he will be given adequate pain medication. The use of antidepressants as an adjunct to pain management is sometimes helpful. Often, the patient will begin to withdraw emotional investment in others as he begins to turn away from the living and focus more on himself and his approaching death. Understanding this as a common development and communicating this to family, friends, and lovers can often be very comforting to them. Furthermore, the patient is often relieved by the opportunity to discuss his fears and concerns about dying. He is encouraged to take care of any business he
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feels is left to finish, is supported in his decisions regarding treatment, and ultimately may be given permission to let go of life with the understanding that the consultant will do all he can to see that the patient's wishes are followed after his death. -
COMMUNITY-BASED PSYCHOSOCIAL SUPPORT In addition to the routine care and psychologic support provided by medical professionals, the AIDS patient in San Francisco may avail himself of the services of a community-based organization providing comprehensive support. Founded in 1974, the Shanti Project was organized as a volunteer organization to provide nondirective peer support, advocacy, and companionship for patients with terminal illnesses. The original goal was to decrease the feelings of isolation and to foster the hope and strength needed for the patient and their loved ones to face and manage an often overwhelming situation. Since the advent of the AIDS epidemic in San Francisco in 1981, the Shanti Project has focused its energy on persons with AIDS. Approximately 80% of the 1100 persons with AIDS in San Francisco have utilized one or more of the current Shanti programs. In an effort to meet the rapidly increasing numbers of AIDS clients, the Shanti Project has grown from a volunteer body of 60 to a current total of 204 emotional support volunteers and 67 practical support volunteers. Persons with AIDS are active board members and participate in training Shanti volunteers. The Shanti Project has been mandated by the City of San Francisco as the organization to provide psychosocial services to persons with AIDS and their families, friends, and loved ones. Shanti's major source of funding comes from a contract with the City and County of San Francisco, supplemented by individuals and private foundations. In addition to the emotional support program, Shanti has a practical support program, a residence program, and a counseling program at San Francisco General Hospital. Emotional Support Program This volunteer counseling program provides free individual and group support to persons with AIDS and their families, friends, and loved ones. An individual's reactions to life-threatening illness and grief are viewed as legitimate human responses, rather than as "abnormal" or "pathologic." After being interviewed and screened, volunteers undergo a 40-hour training, in which they learn to respond to a wide range of emotions as well as to put aside any agendas about how clients should deal with their illness or grief. Shanti believes that when people are given unconditional support and caring, they become empowered to live with their illness in a way that is best far them. Volunteers are often assigned to a client shortly after their diagnosis and accompany them through the entire course of the illness. Emotional support volunteers make a commitment of 6 hours a week for 6 months. Two of these hours are spent in a mandatory weekly support and supervision group led by experienced and specially trained volunteers. These groups are considered essential in preventing "burnout," and as a result many volunteers remain in the project longer than 6 months.
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Many clients attend support groups in addition to or in place of individual counseling. In these self-help groups, the patient not only derives support from the group, but is also given the opportunity to be of help to others. This fosters self-esteem as well as confronting the patient's view of himself as helpless. The group also serves to reduce social isolation and encourage socialization and interaction among the members. Clients often come to the first group meeting feeling alone. Many subsequently form meaningful ongoing friendships. There are support groups for persons with AIDS, anticipatory grief groups, and a bereavement group. Each group is cofacilitated by a Shanti staff member and an experienced volunteer. Practical Support Program This program developed from the realization that often basic everyday needs of clients were not being met. Practical support volunteers assist patients in a variety of ways, including grocery shopping, meal preparation, laundry, banking, moving, and cleaning. In addition, several practical support volunteers staff the AIDS Outpatient Clinic at San Francisco General Hospital, assisting with transporting patients and running errands. The Shanti Project owns and operates a van to transport people with AIDS to and from clinic appointments. This service is equipped to provide services to ambulatory people in nonemergent situations. Modeled on the emotional support program, practical support volunteers undergo a 20-hour training and make a commitment of 6 hours per week for 6 months. The trainings include a medical overview of AIDS, instructions on moving people in and out of bed, feeding people in bed, changing sheets, and cleaning bedridden people. Volunteers are presented a panel session by persons with AIDS and participate in role playing and exercises in exploring their feelings and fears about grief and death. After the training, volunteers attend 2-hour support and supervision groups every 2 weeks. The goal of this program is to enable patients to live with dignity, having their survival needs met at home. Residence Program The impetus for this program came from the fact that people with AIDS were being displaced from their homes due to fearful landlords and roommates or financial crises. The purpose of the Residence Program is to provide low-cost, permanent, stable, and supportive housing to San Francisco residents with AIDS. The locations of the residences are kept confidential to protect privacy. The cost is 25% of a person's income plus $5.00 a month. The Residence Program pays the utilities and maintains the houses. There are currently seven houses or apartments housing 28 people with AIDS. In the past 2 years, over 80 persons with AIDS have lived in the residences. Designed as an independent and cooperative living situation, each resident has their own bedroom and shares the kitchen, living room, and bathroom facilities. Where only the residents permanently reside in the homes, practical support volunteers and a Shanti staff member weekly clean the residences. When persons living in the houses become unable to care for themselves independently, referrals are made to the Practical Support Program and/or licensed home care agencies such as a hospice for nursing and attendant care. By carefully planning and coordi-
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nating services, patients are able to remain at home through the terminal stages of their illness. Hospital-Based Counseling Program The Shanti Project's counseling program at San Francisco General Hospital was initiated in the AIDS Clinic through the impetus of a patient who became concerned about fellow patients sitting in the waiting room, alone and afraid, awaiting a diagnosis and watching others with advanced disease. A Shanti Project counselor was hired to provide support services for AIDS outpatients. From an initial 3 hours a week, the position quickly expanded to 26 hours weekly and became funded through a contract with the City of San Francisco. The counselor provides support and referrals for people awaiting diagnoses, newly diagnosed patients, patients with deteriorating conditions, and families and friends. There are currently over 100 patient visits per month with Shanti counselors through the outpatient clinic. In addition to the outpatient services, two counselors staff the AIDS inpatient facility at San Francisco General Hospital, providing support, patient advocacy, information, and referrals for legal, religious, financial, housing, and funeral needs 7 days a week. Hospital-based counselors are selected from the Shanti Project's volunteer body. They receive additional training in medical, ethical, and legal issues, addressing life-support and resuscitation, in-depth psychosocial assessment, and referral making. These counselors are also available to provide support and consultation for the nurses, physicians, and other hospital staff. SUMMARY Due to the magnitude of the AIDS epidemic in San Francisco, centralization of services has been essential for providing maximal patient care and support, and allowing for efficient performance of clinical investigation. \Vhile other locales with fewer numbers of documented cases may not have the need for such extensive organization, lessons can be adopted from the San Francisco experience. It is never an easy task to provide routine medical care and psychosocial support for a young patient with an ultimately fatal illness. Close cooperation of the medical establishment and the community at large, with governmental assistance and support, facilitates this difficult undertaking. REFERENCES 1. Abrams, D. I.: Lymphadenopathy syndrome in male homosexuals. In Gallin, J. I., and Fauci, A. J. (eds.): Advances in Host Defense Mechanisms. Volume 5, New York, Raven Press, 1985, p. 75. 2. Alien, J. R.: Epidemiology of the acquired immunodeficiency syndrome (AIDS) in the United States. Semin. Onco!., 11 :4, 1984. 3. Bernstein, J. G.: Chemotherapy in psychiatry. In Hackett, T. P., and Cassem, N. H. (eds.): \1assachusetts General Hospital Handbook of General Hospital Psychiatry. St. Louis, C. v. Mosby Co., 1978. 4. Blum, 1. W., Chambers, R. A., Schwartzman, R. J., et a!.: Progressive multifocal leukoencephalopathy in acquired immune deficiency syndrome. Arch. Neuro!., 42:137, 1985.
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Assistant Director, AIDSiKS Clinic San Francisco General Hospital Building 80, Ward 84 995 Potrero Avenue San Francisco, CA 94110