The almost limitless diversity of physician experience and attitudes, as well as variability from patient to patient in prognosis and social setting, makes the title of this chapter seem at first glance hopelessly naive. Yet, despite the obvious complexities, many common underlying themes can guide the physician conveying the diagnosis of HIV infection.
Physicians, for the most part, are members of the dominant culture, whereas HIV-infected patients generally belong to socially and politically isolated and stigmatized groups. While physicians are usually heterosexual, belong to the middle class, and do not use injection drugs, their patients with HIV disease are often homosexual, members of a racial or ethnic minority, or users of injection drugs, or sometimes all of these. Despite their many differences from clinicians, HIV-infected patients as a group often have two things in common: relative youth and the prognosis of a stigmatizing, chronic, disfiguring, transmissible, and potentially fatal disease. Clinicians should keep in mind these shared features and differences when informing patients of a diagnosis of HIV disease. This mind-set and the principles of honesty and practical support should guide the physician in this discussion. Obviously, the stress of conveying and receiving a diagnosis of HIV disease has been substantially reduced, but not eliminated, due to effective current therapy.
The first goal in relaying a diagnosis is to empower the patient to participate in subsequent decisions by providing sufficient factual information in terms he or she can understand. This effort takes time, but the reward is increased trust between patient and physician. This trust and the active involvement of the patient can help in making the many difficult decisions that characterize management of HIV disease.
In discussing the diagnosis, first assess the patient's level of information and degree of anxiety. Many people at high risk have friends or acquaintances who are HIV infected or knew someone who died of HIV disease. Thus, they may be quite familiar with the disease, but they still need information pertaining to their specific cases. The physician should relay the needed information with language befitting the estimated level of medical sophistication of the patient, while also remembering that this is a very emotionally charged situation for the patient. The first discussion of the diagnosis should be direct, using lay terms in most cases, and brief. The physician should expect that the patient will not "hear" a detailed description of management options, which should be discussed or reviewed at subsequent visits. These visits should be scheduled promptly if the patient is not hospitalized. If the patient has a close friend or family member, that person should be invited to participate in discussing the diagnosis, because someone not so directly involved can retain more of what is said and thus help inform and support the patient after visiting the physician.
Medical information given to the newly diagnosed patient with an HIV-related opportunistic disease should include the name of the HIV-related diagnosis in medical terms (eg, Pneumocystis carinii pneumonia) as well as a lay description of the disease. The physician should discuss the relationship of any particular diagnosis to HIV infection in explicit terms.
Generally, the patient should be educated about the basics of HIV infection, CD4 cell depletion, and the importance of prolonged suppression of viremia as the cornerstone of HIV management. Again, this does not need to be done at the first visit in most cases. If antiretroviral therapy can be safely deferred, time taken for patient education may well result in improved decision making and medication adherence.
Although the process of patient education obviously must be individualized, it is possible to delineate some common principles.
Expect the diagnosis to be stressful even for the patient who is quite aware of the favorable outcome of current antiretroviral therapy. As mentioned, HIV remains a stigmatizing and serious chronic disease that will change the patient's life, particularly if advanced disease is already established.
Anticipate the patient's access to extensive information in the community--some of which is seriously outdated or simply wrong. Encourage the patient to discuss his or her beliefs, knowledge, and usual sources of information. Guide the patient to trusted individuals, organizations, Web sites, and other publications. Encourage the patient to consider all treatment options, and address misinformation in a supportive and nonjudgmental but direct way.
Anticipate the patient's fear of death. Particularly in the patient already symptomatic with advanced disease at the time of diagnosis, fear of death may be immediate and realistic. Without oversimplifying the situation, it is important to help the patient understand that HIV infection is now quite treatable in almost all cases. Help prepare the patient for the complexity of necessary therapy, after giving a realistic level of reassurance that this disease, once a certain death sentence, is now a manageable chronic disease.
One area of care that the physician can address immediately is the patient's practical needs. A newly diagnosed patient is, in many cases, suffering severe stress and needs to know where to turn for help. Often, this help is simply the availability of someone to talk to about the meanings of the diagnosis. HIV disease often affects people who have a limited array of close friends and family members. Thus, for many HIV-infected patients, help for this immediate need has come from volunteer, nonprofessional counseling organizations that offer opportunities to "talk out" the diagnosis in individual or group meetings. Although these resources are not suitable for all newly diagnosed patients, they are helpful for many; the physician should be aware of them so that patients can be appropriately referred. Additionally, nurses and social workers can provide invaluable assistance to patients throughout this difficult period.
Patients with HIV disease may also need housing, emergency financial help, or food. As with counseling, existing community organizations may meet these needs and, again, it is the physician's responsibility to appropriately refer patients to these agencies.
A final area to address is the assignment of power of attorney. Through this process, a patient empowers another person to participate in clinical management decisions with the physician if the patient is unable to do so. As with medical management options for any serious chronic disease, assignment of power of attorney is best addressed early in the course of HIV disease, before the occurrence of conditions that may affect the patient's ability to express treatment preferences.