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AIDS & HIV Infection Update:
New Research, Ethical Responsibilities, Evolving Legal Frameworks, & Published Resources
ABSTRACT: An update on the implications of AIDS [acquired immune deficiency syndrome] and HIV [human immunodeficiency virus] infections for mental health practitioners. The chapter discusses new research, ethical responsibilities, and legal considerations for practitioners; denial, delay, and distortion; test reliability, risk factors, and risk groups; general principles of counseling those people who have AIDs or who are or might be HIV-positive; suicide, the dilemma of the right to die, and foregoing life-sustaining interventions; neuropsychological aspects of AIDS and HIV infections; is there a legal duty to protect or warn third parties; and education and prevention.
No therapist can ethically ignore the challenge that the AIDS virus has thrust upon us. A few stark statistics only hint at the tragic dimensions of this disease. At the time we are writing this article, AIDS is the leading cause of death for men age 25-45 and women age 25-34 in New York City; it is the leading cause of death in the U.S. for people with hemophilia and for people who are intravenous (IV) drug users (Institute of Medicine/National Academy of Sciences/Nichols, 1989). The San Francisco Department of Public Health estimates that half of all gay and bisexual men in San Francisco are infected with the AIDS virus (Schochet, 1989). A recent study showed that almost 2% of babies born in New York City had HIV antibodies, indicating that their mothers are infected with HIV (Lambert, 1988).
Any fatal disease is a source of tragedy. AIDS, however, has created an emergency that seems especially vicious. The tragedy has been magnified because of what the Presidential Commission on the Human Immunodeficiency Virus Epidemic (1988) identified as the severely "limited access to quality care, as well as the limitations of financing illness care in general across the nation" (p. 141).
The tragedy has also been magnified by relatively high infection rates among several groups that are the objects of latent and not-so-latent bias from the health care professions as well as the more general culture. The American Medical Association, for example, recently refused to approve a bylaws change that would have prohibited discrimination on the basis of sexual orientation ("DB Protests," 1990). Within the profession of psychology, a national survey found that almost 1 out of 5 (23.5%) psychologists practicing as psychotherapists treated homosexuality per se as pathological (Pope, Tabachnick, & Keith-Spiegel, 1987). The bias in the general culture is likewise widespread and may include violence (Herek, 1989). Finally, the tragedy has been magnified by our initial - and to a great extent continuing - tendency to respond to the epidemic with denial, delay, and distortion.
The purpose of this contribution is to highlight some of the recent research and other developments that may be useful to practitioners.
DENIAL, DELAY, AND DISTORTION
One of the first steps in overcoming the denial of the AIDS epidemic is to learn from the available data about the spread of the disease. Interested readers may wish to review some of the grim summary statistics collected by the Center for Disease Control (CDC, 1990) and the World Health Organization (WHO, 1990a, 1990b). Although it is crucial that those of us in the U.S. recognize the. spread of the disease within our own country, it is equally important that we not view these data in a vacuum, as if the rest of the world were nonexistent or unimportant. As the WHO data indicate, Africa has been hit especially hard. Those suffering from AIDS already fill almost half the beds in some Central Africa hospitals ("The Extent," 1989). As the CDC (1990) data indicate, the annual rate of increase in the U.S. appears to be decreasing.
Short- and long-term projections of the spread of the disease are difficult. Using a relatively conservative approach, the Central African Journal of Medicine announced:
Current, short-term predictions have projected a global cumulative total of over one million AIDS cases by the end of 1991. Africa and the Americas may experience about a threefold increase in cumulative cases by 1991, while Asia may experience about a tenfold increase of AIDS cases in the same period because the epidemic in most Asian countries is still in its very early stages when case doubling times are much shorter. ("Forty-Second," 1989, p. 518)
Longer-term projections indicate that "over 5 million new cases of AIDS may develop between 1990 and the year 2000" ("Forty-Second," 1989, p. 518). The Chief of the Surveillance, Forecasting and Impact Assessment Unit of the WHO Global Programme on AIDS and the Director of the Global Programme emphasize that "because of the very long (mean of 8-9 years) incubation period between HIV infection and the development of AIDS, new cases over the next five years will be mostly derived from persons who became infected with HIV in or before 1987" (Chin & Mann, 1989, p. 1; see also Chin, 1989; Mann, 1989).
Another crucial step in overcoming denial is for AIDS to become personally real and immediate to us, to recognize that the mass of overwhelming statistics represent people like ourselves. For many of us, this translation from abstraction to human immediacy probably comes when we are with those we care about - our friends, our clients, our colleagues, our lovers, our family - when they discover that they are infected, when they struggle with the reality of a deadly disease, and finally, when they die. This process tends to bring more than grief to us. As the statistics become real, we begin the bitter realization of the costs of our own denial and delay - our denial and delay as individuals, as members of various organizations, and as a society - in regard to this epidemic. In Graham Greene’s The Third Man (1950/1977), the sinister Harry Lime takes Rollo Martins up in a Ferris wheel and makes a cruel observation concerning the sense of unreality produced by denial. He points out the people far below, referring to them as "dots," and asks Rollo how he would feel if he were offered a large sum of money for every "dot" he was willing to let disappear. He asks Rollo if he would reject the offer immediately, or if he would begin figuring out how many of the dots might be eliminated.
For too long, many of us as individuals and as a society have treated those suffering from HIV disease as "dots" rather than as people with a reality and an importance equal to our own. Our "payments" for this inhumane view are varied: We spare ourselves the personal discomfort and fear of acknowledging a fatal epidemic; we "save" tax dollars and other funds that might more rapidly bring about a cure and a preventive vaccine or extend the life and reduce the suffering of those infected; we comfort ourselves by maintaining that we are not in a high risk group or are practicing safe(r) sex and thus the epidemic is not our problem. Meanwhile, people are dying.
Perhaps a third crucial step in confronting the denial and delay is to acknowledge and educate ourselves about the barriers to effective action and the ways in which social and governmental responses have too often been founded upon distortions. Shilts’ (1987) carefully researched And the Band Played On: Politics, People, and the AIDS Epidemic is an excellent resource. Also extremely useful are AIDS and the Health Care System (Gostin, 1990a), Mobilizing against AIDS (Institute of Medicine/National Academy of Sciences/Nichols, 1989), and AIDS and Its Metaphors (Sontag, 1989).
Finally, as practitioners we must overcome our denial concerning the full range of psychological consequences that the HIV epidemic may cause for our patients. For example, many therapy patients may themselves be in a state of denial about the extent to which they may be at risk or may be placing others at risk. The psychological consequences, however, reach far beyond issues of possible new infections. As yet, for example, we have not attended adequately to, and know relatively little about, multiple grief reactions in younger age groups. Many gay men have lost most of their friends over the last 9 years.
WHO HAS OR MIGHT HAVE HIV?
TEST RELIABILITY, RISK FACTORS, AND RISK GROUPS
Most therapists are doubtless aware that in each country AIDS has spread much more rapidly within some groups than others. In the U.S., for example, AIDS has spread more rapidly among gay and bisexual men, among adults in the 20-50 age range, among blacks and Hispanics, among those living in cities of over 1,000,000, and among IV drug users, as the CDC (1990) data indicate. Efforts to meet the urgent needs of individuals who are HIV infected in such "high risk" groups must not only continue but must increase substantially and promptly.
Increased efforts to meet the needs of infected individuals within these groups, however, must be accompanied by a realization of the needs of infected individuals who do not fall within these groups. For example, heterosexual transmission of HIV among individuals who have reached or passed age 65 in the U.S. has recently increased significantly (Folsom, 1990; Riley, Ory, & Zablot sky, 1989).
Even more problematic is the observation made by Benjamin Bowser, Director of Multicultural Inquiiy and Research on AIDS (MIRA):
We define people who are at risk of being infected with HIV by their public identities--they are gays or bisexuals, intravenous drug users and now possibly crack cocaine users and dealers. Yet for many it is their private behaviors, often not reflected in their self-selected public identities, that put them at risk for HIV infection. [Thus], critical subpopulations are neither well-defined, accessible, nor self-identified. (1990, p. 1)
That even relatively few sexual contacts with an infected individual may, under certain conditions, transmit the virus was documented by contact-tracing 16 women who had been sexually intimate with a man who was HIV-infected (Clumeck et al., 1989). The median number of sexual contacts with the man was 2.5. None of the women ever used IV drugs, engaged in sex in geographic areas where HIV was common, or received blood transfusions. During the past 3 years, their mean number of sexual partners was 2.5 (range 1-4). Nine of the 16 women were infected, a transmission rate of 56%. Compounding the problem, low risk individuals may be unaware that their sexual partner is infected (see, e.g., Cochran & Mays, 1990).
The issue of testing for the presence of HIV has been tragically complicated by the practice of administering the test without obtaining informed consent and sometimes without notifying an individual at all. Henry, Maki, and Crossley’s (1988) research, for example, indicated "that HIV anti body testing is often done without consent" (p. 229). Similarly a UCLA study "found widespread use of clandestine AIDS testing by hospitals in the United States, a procedure that violates the law in many states.. . and runs counter to standards of ethics and appropriate practice" ("The Illogic," 1990; see also Bloch, 1990). Furthermore, studies have indicated that "laboratory reports for HIV antibody tests may be incomplete and even inaccurate" ("Quality of HIV," 1990).
Testing is likely to increase, in part because, as numerous CDC researchers have concluded from diverse research studies: "Risk reduction counseling combined with testing has become one of the important intervention strategies available to change sexual and needle sharing behavior" (Brick man, 1989, p. 1). Also, recent evidence increasingly suggests that those who are infected with HIV but not yet suffering from AIDS may benefit significantly from early treatment. Thus, for example, medical groups in the Los Angeles areas recommended in May, 1990, that those who received blood transfusions between 1978 and March, 1985 (the month in which hospitals and blood banks began screening for HIV) consider undergoing testing. (Some clinics and individual physicians in the Los Angeles area have made testing available on not only a confidential but also a completely anonymous basis [i.e., the individual never provides a name or personally identifying information; he or she is simply provided a code number for receiving results and counseling].) This recommendation to consider undergoing testing "was made because recent studies indicate the drug AZT can slow progression of AIDS in children and even in people who were infected by the deadly virus but haven’t yet developed symptoms" ("AIDS Tests Urged," 1990, p. 7).
Psychotherapists working with individuals who are considering (or have already undergone) HIV testing need to maintain an awareness of the rapid evolution and complexities of the testing instruments and processes (e.g., Frosner, Dobler, & von Sonnenberg, 1990; Gershey-Damet, Kodjo, & Benoit, 1990; Jackson et al., 1990). Generally the initial tests screen blood samples for antibodies to the virus; such tests are termed ELISA (enzyme-linked immunosorbent assay). If the individual reacts positively to ELISA tests, a more difficult, expensive, and supposedly accurate test such as the Western Blot (which searches for antibodies against specific protein molecules) or radioimmuno precipitation or radioimmunofluorescence assay can be administered. Each test has a different level of sensitivity (percentage of true positives) and specificity (percentage of true negatives). For example, the San Francisco County Alternative Test Sites administer three ELISAs and then an immunofluorescent assay; only if the results are positive to all four tests is the testing series itself considered positive (Dilley, Pies, & Helquist, 1989).
The complexity of the process and the extent to which understanding is evolving rapidly is hard to overstate. For example, Rabeneck and her colleagues (1990) report that a sample of 16 homosexual men who were referred for evaluation due to painful swallowing (odynophagia) and whose HIV serologic findings were negative at the time of referral were suffering from acute HIV infection.
Psychotherapists working with individuals who are considering HIV testing need also to maintain an awareness of the major psychological issues surrounding taking the antibody test. Research has identified three major reasons that individuals refrained from testing: (a) anxiety about taking the test, (b) fear of loss of confidentiality, and (c) fear of discrimination (Coates et al., 1988). Over time, the fears related to confidentiality and discrimination have decreased; anxiety about the test, however, appears to have increased. Thus, individuals may seek psychotherapy to address such anxiety and fear and to help decide whether to take the test. Many patients use group therapy to work through fears and anxiety before being tested. As a group, we practitioners may greatly underestimate the psychological pain and struggle that people experience in regard to testing for HIV infection.
What is crucial is that those who are considering or have undergone HIV testing be accorded full informed consent and not be deprived of empathetic and knowledgeable counseling, education, support, and resources (AIDS Health Project, 1989; Brickman, 1989; Dilley et al., 1989; Institute of Medicine/National Academy of Sciences/Nichols, 1989). It is also crucial that the potential negative consequences of some testing approaches be acknowledged and that focusing on testing in and of itself as the sole or primary means to halt the spread of the virus is ineffective and potentially counterproductive (Coates et al., 1988).
GENERAL PRINCIPLES OF COUNSELING
Psychotherapists providing professional services to people with the HIV infections (whether or not the infection has produced discernible symptoms) need to remain abreast of the discoveries, advances, and innovations made by their colleagues working in this area. The published resources help us to remain aware of a variety of issues including therapeutic modalities and strategies, adequate and integrated resources (e.g., the therapy patient’s access to medical, educational, religious, and legal resources, to social support, and to housing, nutrition, and transportation), prejudice, countertransference, and adequate resources for therapists experiencing profound grief, despair, anger, frustration, lack of institutional support, and potential "burn-out."
The following published resources may be useful to therapists working with people infected by the virus:
- Dilley, Pies, and Helquist, Face to Face: A Guide to AIDS Counseling, 1989
- Fawzy, Namir, and Wolcott, "Structured Group Intervention Model for AIDS Patients," 1989 and Fawzy, Namir, Wolcott, Mitsuyasu, and Gottlieb’s, "The Relationship between Medical and Psychological Status in Newly Diagnosed Gay Men with AIDS," 1989
- Adler and Beckett, "Psychotherapy of the Patient with an HIV Infection: Some Ethical and Therapeutic Dilemmas," 1989
- Barrows and Halgin, "Current Issues in Psychotherapy with Gay Men: Impact of the AIDS Phenomenon," 1988
- Ludington and Wychules, "Developing Peer Support for Those Living with HIV Infection," 1989
- DeMaio, "Counseling Issues for People with Hemophilia and HIV Infection," 1989
- Lane and Levine, "Caring for Homeless People with HIV Disease," 1990
- Paul, "AIDS Counseling and Prevention among Bisexual Men," 1989
- Fullilove, "Ethnic Minorities and HIV Disease," 1989
- Danziger, "Women and AIDS," 1989
- Hauer, "Pregnancy and HIV Infection," 1989
- Namir, Alumbaugh, Fawzy, and Wolcott, "The Relationship of Social Support to Physical and Psychological Aspects of AIDS," 1989 and Namir, Wolcott, and Fawzy, "Social Support and HIV Spectrum Disease," 1989
- Capaldini, "Primary Medical and Emotional Care for HIV Infection," 1989
- Cooper, "Caring for Children with HIV Infection," 1989
- Greenspan, "HIV Infection among Prisoners," 1989
- Wolcott, Fawzy, and Namir, "Clinical Management of Psychiatric Disorders in HIV Spectrum Disease, 1989
- Caldarola and Helquist, "Counseling Mixed Antibody Status Couples," 1989
- K.. Sheridan and E. P.
Sheridan, "Psychological
Consultation to Persons with AIDS," 1988
SUICIDE, THE DILEMMA OF THE RIGHT TO DIE,
AND FOREGOING LIFE-SUSTAINING INTERVENTIONS
Psychotherapists serving people with HIV infection and people who are being tested for the virus must be alert to the possibility of suicidal risk. Marzuk and his colleagues (1988) studied suicide among men in New York City and found that "the relative risk of suicide in men with AIDS aged 20-59 years was 36.30 times... that of men aged 20-59 years without this diagnosis, and 66.15 times. . . that of the general population" (p. 1333). Perry, Jacobsberg, and Fishman (1990) studied the effects of testing on suicidal ideation among 244 men and 57 women who were physically asymptomatic:
During the week after notification, rates of self-reported suicidal ideation decreased significantly among seronegative subjects and did not significantly increase among the seropositive subjects. About two months later, suicidal ideation had significantly decreased even among the seropositive sample. Less reassuring is the finding that even in the context of confidential HIV testing with extensive pretest and post-test counseling of self-selected volunteers, suicidal ideation persisted after notification in over 15% of both the seropositive and seronegative groups. (p. 681)
In Miami, seven people during a 6-week period took their own lives after testing positive for the virus, even though they were asymptomatic (Pierce, 1987).
Whether a psychotherapy patient suffering from AIDS--or, for that matter, any individual-- has the right to choose to commit suicide without oppositional interventions from the therapist (and perhaps with the implicit or more active support of the therapist) is a controversial question which the profession has not adequately addressed. State regulatory statutes may require therapists to intervene to prevent a patient’s suicide, and criminal statutes may declare any help, advice, or encouragement - rendered by either a therapist or nontherapist to commit suicide as constituting a felony. Nevertheless, a national study of psychologists found that at least I out of 5 had accepted a client’s decision to commit suicide, that less than half (45.2%) of all respondents believed that to do so was always unethical, and that less than half (48%) believed that to do so was always poor practice (Pope, Tabachnick, & Keith-Spiegel, 1987, 1988).
Another study of psychologists’ decisions regarding whether to break the law in light of perceived patient welfare found that, because the principles of civil disobedience were inapplicable to many clinical situations, therapists were often unprepared; they tended to lack adequately consid ered and internally consistent strategies for insuring humane and responsible courses of action when believing that compliance with a legal obligation would be harmful, unjust, or otherwise wrong.
Absolute compliance [with the law] connotes a "just follow orders" mentality all too ready to sacrifice personal values and client welfare to an imperfect system of rules and regulations. Selective noncompliance connotes an association of people who have anointed themselves as somehow above the law, able to pick and choose which legal obligations and recognized standards they will obey. (Pope & Bajt, 1988, p. 828)
An adequate, sensitive, caring, and ethical response to people with AIDS who are considering suicide (and who may request support and assistance) will rest in part on our willingness to discuss these issues much more openly, on informing ourselves about the complex clinical and ethical as pects, and on our ability to identify factors within ourselves that extinguish, block, or distort our respect and empathy for our fellow humans. The following resources benefit clinicians confronting profoundly complex issues concerning AIDS and the choice of a time and a way to die:
1. Brody, Suicide and Euthanasia,
1989
2. Sprung, "Changing Attitudes
and Practices in Foregoing Life-Sustaining Treatments," 1990
3. Yarnell and Battin, "AIDS,
Psychiatry, and Euthanasia," 1988,
4. Mackim, Mortal Choices:
Bioethics in Today’s World, 1987
5. Pellegrino and Thomasma,
For the Patient’s Good, 1988
6. Humphry and Wickett, The
Right To Die: Understanding Euthanasia, 1987
7. Dilley, Pies, and Helquist,
Face to Face: A Guide to AIDS Counseling, 1989
8. Wood, Marks, and Dilley,
AIDS Law for Mental Health Professionals, 1990
NEUROPSYCHOLOGICAL ASPECTS OF AIDS AND HIV INFECTIONS
Therapists helping people infected with the virus need to remain aware of the emerging re search data regarding HIV and possible neuropsychological impairment. Adequately assessing neuropsychological complications is an important step in treatment planning.
The course of AIDS seems clearly associated with increased likelihood of developing neuropsy chological impairment. For example, Tross and her colleagues (1988) utilized a group of neuropsy chological tests to evaluate gay men falling into the following categories: (a) 40 were suffering from AIDS and had been specifically referred for neurological consultation, (b) 44 were suffering from AIDS that had been very recently diagnosed, (c) 16 had tested positive for HIV antibodies but had not developed AIDS, and (d) 20 had tested negative for HIV antibodies. Both of the AIDS groups showed significantly more impairment than the other two groups in the following areas: concentra tion, fine motor control, motor speed, and visuospatial problem-solving.
Apparent organic problems may arise from an infection related to HIV, to organic damage unrelated to HIV infection, or to a psychological response to the knowledge that one has AIDS (or is HIV infected) and to the social, economic, legal, and other consequences of being known to carry the virus. Research conducted by Bruhn and the Copenhagen Study Group of Neurological Complications in AIDS (1987) led them to emphasize that "the diagnosis of dementia should not be ascribed to AIDS patients on the basis of nonspecific, psychobehavioral deviations that may actually represent a normal psychologic reaction to the disease, extreme fatigue, or both" (p. 443).
If the neuropsychological impairment is due to infection, it is important to determine whether the impairment results from opportunistic infections that are treatable (e.g., toxoplasmosis, crypto coccal meningitis) or from a brain infection, such as AIDS Dementia Complex (ADC), for which effective treatment has not yet been identified (Dilley et al., 1989). The Center for Disease Control (CDC) found that among 39,332 people with HIV, encephalopathy (degeneration of the brain) occurred in 6.5% of the adults and in 11.5% of the children (Dilley, 1989). "Encephalopathy is rarely reported as the only early manifestation of AIDS, and appears to be most common at the extremes of age: older adults and younger children" (p. 1).
Ostrow and Stryker (1990) note:
In addition to treatment of possible coexisting depression, behavioral improvements are often achieved through the correction of nutritional or metabolic disturbances, the elimination of neurotoxic agents, and the management of delirium or psychosis. Although psychoactive drugs may be necessary. .. they need to be carefully titrated and minimal dosages used to avoid toxicity. HIV-infected patients appear to be especially sensitive to the anticholinergic and other adverse effects of psychotropic medications. The increased sensitivity to drug effects is similar to that seen in elderly patients, with beneficial responses often occurring at dosages below the therapeutic range for unimpaired persons. (p. 36)
While remaining alert to the possibility of neuropsychological complications and the need to insure adequate assessment of any emerging consequences, it is useful to be mindful that HIV infection in and of itself is not a good indication of neuropsychological problems. The World Health Organization’s (1988) Report of the Consultation on the Neuropsychiatric Aspects of HIV infection emphasizes monitoring the medical status of the individual; for example, when T4 cell counts fall below 200, complications are common.
Psychologists who conduct neuropsychological assessments as well as those who provide other services to people with HIV infections need to develop efficient ways to remain abreast of the relevant research findings concerning the progression and effects of the virus throughout the human body. Among some recent findings are those reported or reviewed by Bolognesi (1990); Hamburg and Fauci (1990); Hessol and Lifson (1990); Fahey et al. (1990); Bukantz and Lockey (1990); Douglas (1990); Hirsch (1989); Institute of Medicine/National Academy of Sciences/Nichols (1989); and Lang (1989).
IS THERE A LEGAL DUTY TO PROTECT OR WARN THIRD PARTIES?
Whether a therapist has a duty to protect third parties when his or her patient, if HIV-positive, persists in engaging in unprotected sex with an unknowing partner involves complex clinical and -legal questions which have not been adequately addressed or resolved (Pope, 1988). Most of the at tempts of the courts to grapple with the issue of attempts to infect a third party seem to have involved assaults. In some instances the courts have held that attempts, generally through some form of overt attack, to infect someone with the virus is a criminal offense. To date, eight individuals with the virus have been charged in the U.S. with intent to murder for biting or spitting, with one sentenced to life in prison ("Inmate Sentenced," 1990).
Regarding the issue of whether a therapist could be successfully sued for failing to notify an unknowing partner of an HIV-positive patient’s condition--assuming the absence of relevant legislation mandating confidentiality in that jurisdiction--the authorities whom we have consulted are divided in their opinions (e.g., Clifford Stromberg, JD, Joe George, PhD, JD). Rick Imbert, President of the American Professional Agency, which provides professional liability insurance to psychologists through the APA plan, notes that there have, as yet, been no suits filed against psychologists in regard to failing to warn or protect for patients who are HIV-positive, although "it is only a matter of time" (personal communication, May 14, 1990).
Readers interested in examining the complex and rapidly evolving legal and clinical discussions of this dilemma may find useful recent publications by the following authors:
1. Gostin’s excellent series, published in the Journal of the American Medical Association (JAMA), presenting the AMA’s review of judicial and commission decisions regarding the HIV spectrum of infections, such as "National Review of Court and Human Rights Commission Decisions, Part I: The Social Impact of AIDS" (1990b), and "Part II: Discrimination" (1990c). Note: This series, like some of the other resources listed below, is relevant to a wide range of legal aspects of AIDS beyond the issue of the duty to warn or protect.
2. Dickens, "Confidentiality and the Duty to Warn," 1990; Dickens, "Legal Limits of AIDS Confidentiality," 1988a; and Dickens, "Legal Rights and Duties in the AIDS Epidemic," 1988b
3. Melton, "Ethical and Legal Issues in Research and Intervention," 1989
4. Wood, Marks, and Dilley, AIDS Law for Mental Health Professionals, 1990
5. Meinhart, "AIDS and Issues of Partner Notification," 1989
6. Zonana, "The Duty to Protect: Confidentiality and HIV," 1989
7. American Bar Association AIDS Coordinating Committee’s, AIDS: The Legal Issues, 1988
8. AIDS Task Group of the American Academy of Hospital Attorneys of the American Hospital Association’s, AIDS and the Law: Responding to the Special Concerns of Hospitals, 1987
9. Eth, "The Sexually Active, HIV Infected Patient: Confidentiality Versus the Duty to Protect," 1988
10. Gray and Harding, "Confidentiality Limits with Clients Who Have the AIDS Virus," 1988
11. Kain, "To Breach or Not To Breach: A Response to Gray and Harding," 1988
An additional set of documents is exceptionally important in addressing this dilemma. First, as this contribution is written (May, 1990) the APA governance structure is considering a policy state ment on "Confidentiality and Prevention of HIV Transmission" developed by the APA Task Force on Psychology and AIDS (APA, 1990); readers are encouraged to contact the APA Office on AIDS to obtain information about the current status of this proposed policy. Second, the World Health Organization’s Global Programme on AIDS (GPA) and Sexually Transmitted Disease Programme (VDT) convened a special Consultation on these issues in 1989. Emphasizing the WHO’s deep commitment to protecting the rights and dignity of HIV-infected persons (e.g., Resolution WHA41.24: "Avoidance of Discrimination in Relation to HIV-Infected People and People with AIDS"), the Consultation stated:
Partner notification as part of a comprehensive AIDS prevention and control programme is acceptable only if the following principles are adhered to. Partner notification should:
(a) be in accordance with the Global AIDS Strategy and national AIDS programme goals;
(b) respect the human rights and dignity of the partners and the index person;
(c) be a balanced part of a comprehensive AIDS prevention and control programme and be coordinated in the context of primary health care with other public health activities such as programmes on sexually transmitted disease (STD), maternal and child health, family planning and substance abuse prevention;
(d) be voluntary and not coercive, and index persons and their partners should have full access to available services independent of their willingness to cooperate with partner notification activities;
(e) be confidential, including written records, locating information for partners, and, in provider referral, the identity of the index person. Nevertheless, in an occasional provider referral situation such as where an index person has had only a single partner, the identity of the index persons may be able to be inferred;
(f) be undertaken only when appropriate support services are available to index persons and partners; the minimum requirements are counseling on the implications of having been exposed to infection, the availability of voluntary, confidential HIV testing with pre- and post-test counseling and appropriate health and social services; the quality of these services should be assured and regularly monitored. (WHO, 1989, p. 78)
The American Medical Association’s House of Delegates voted to recommend that the health officials of each community establish contact-tracing programs. These programs would alert sexual and needle-sharing partners of persons who test positive for HIV to the possibility that they could be infected ("AMA Revises," 1990).
EDUCATION AND PREVENTION
Opportunities for primary, secondary, and tertiary prevention are numerous, and the needs are obviously pressing.
The tragic dimensions of the AIDS emergency have been magnified by both the inadequacies of the health care system and longstanding social prejudice. Both must be addressed. As the Presiden tial Commission on the Human Immunodeficiency Virus Epidemic (1988) stated:
Ethically, decisions about individual diagnosis, treatment, and care should not be made on the basis of socioeconomic concerns, such as ability to pay, or more global concerns, such as allocation of scarce health care resources. In addition, social prejudices of any type should not in any way influence decisions on treatment. (p. 138)
Practitioners who are planning programs designed to prevent the spread of the virus may find useful resources prepared by Sieber, Song, and Kelzer (1990); Sieber and Sorensen (in press); Morin (1988); Koop (1990); Burke and his colleagues (1990); Haven and Stolz (1988); National Association of State Boards of Education (1989); Keeling (1990); Wilson et al. (1989); Batchelor (1988); Peterson and Mann (1988); Des Jarlais and Friedman (1988); Stall, Coates, and Hoff (1988); Mays and Cochran (1988); Brooks-Gunn, Boyer, and Hem (1988); Flora and Thoreson (1988); Mason, Olson, and Parish (1988); Rugg (1990); Walters (1988); Kelly (1990); Gostin (1990a); and the Institute of Medicine/National Academy of Sciences/Nichols (1989).
The Presidential Commission (1988) wrote:
It is clear that the key to an enlightened response is education and the planning and development of HIV programs and policies well in advance of the occurrence of the first case of HIV infection. The Commission believes that every employer, school system, and community should start that education and planning process now. (p. 119)
Those of us who are employers or who work within organizations such as hospitals, clinics, or universities have an important responsibility to see that the educational and related programs advocated by the Presidential Commission are in place and functioning in our own organizations.
ADDITIONAL RESOURCES
In addition to the specific published resources cited in this contribution, there are three additional sets of resources practitioners may find useful in remaining abreast of this rapidly evolving field and in finding answers to their own or their patients’ questions.
First, the APA Office on AIDS (American Psychological Association, 1200 Seventeenth Street, N.W., Washington, DC 20036) provides numerous valuable resources, including an AIDS Resource Network and a periodic Psychology and AIDS Exchange.
Second, the AIDS Health Project, which is affiliated with the University of California at San Francisco and the San Francisco Department of Public Health, provides a wide range of materials including FOCUS: A Guide to AIDS Research and Counseling, which is published monthly.
Third, a variety of national and local 800 phone lines provide research, treatment, and policy information. The numbers can be obtained from the 800 Directory Assistance. Examples are the National AIDS Hotline (providing a wide variety of information 24 hours a day, 7 days a week) operated by the American Social Health Association, the National Institute of Health’s information line for HIV-related clinical trials, San Francisco’s Project Inform, and Los Angeles’ AIDS Project Hot Line.
Stephen F. Morin, PhD, is Legislative Assistant for Health Policy to U.S. Representative Nancy Pelosi (D-CA) and Assistant Clinical Professor of Medicine in the Department of Internal Medicine and the Center for AIDS Prevention Studies at the University of California, San Francisco. He is former Chairperson of the American Psychological Association’s Task Force on Psychology and AIDS, former President of the California Psychological Association, and served as a member of the APA’s Board of Directors.
REFERENCES & RESOURCES
Adler, G., & Beckett, A. (1989). Psychotherapy
of the patient with an HIV infection: Some ethical and therapeutic dilemmas.
Psychosomatics, 30, 203-208.
AIDS Health Project. (1989). The San Francisco Protocol: Disclosing HIV
Test Results. San Francisco, CA: Author.
AIDS Task Group of the American Academy of Hospital Attorneys of the American
Hospital Association. (1987). AIDS and the Law: Responding to the Special Concerns
of Hospitals. Chicago: American Hospital Association.
AIDS tests urged for those who received blood between ‘78, ‘85.
(1990, May 18). Los Angeles Daily News, p. 7.
AMA revises AIDS policies in light of treatment advances. (1990, January 19).
Psychiatric News, pp.1,9.
American Bar Association. (1988). AIDS: The Legal Issues (Discussion draft
of the American Bar Association AIDS Coordinating Committee). Washington, DC:
Author.
American Psychological Association. (1990). Proposed Policy on Confidentiality
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See also: