The Physician's Role in the Pre-HAART Era

Before we had antiretroviral therapy, physicians learned how to accompany patients through their illness in ways that were humbling but inescapable. Although physicians had traditionally been accustomed to playing this role with incurable illnesses, AIDS was particularly humbling: It was a newly discovered, rapidly fatal disease that affected young adults in vulnerable populations and occurred at a time when life-threatening infectious diseases were increasingly thought to be only of historical interest. With no specific treatment for HIV even conceivable-indeed, for several years before HIV itself was even identified-we learned to bear witness to sickness and dying, offering help to patients and their families with issues of suffering, closure, and legacy. First and foremost, we provided support and advocacy, helping our patients to confront their fears of dying, abandonment, and stigma.

Unprotected by our accustomed therapeutic armamentarium, we also learned to face our own vulnerability and powerlessness and the prospect of our own mortality. Given our lack of ability to change the underlying course of the disease, we spent much of our time and energy learning how to palliate symptoms and treat pain and other debilitating consequences of advanced HIV disease. We also learned a great deal about drug addiction, the stigma of homosexuality, and the fundamental importance of addressing our patients' pressing social needs if we were to have any hope of meaningfully affecting their medical condition. Care for HIV infection was viewed as paradigmatic primary care [5], an example of the importance of approaching disease in its broader human and social context.

The Medicalization of AIDS

Since we became better at treating the virus, a new temptation has emerged to dwell on quantitative aspects of HIV management and complex algorithms of antiretroviral therapy. The tendency to medicalize HIV infection-to reduce the goals of therapy to the reduction of viral loads-reflects our new ability to slow disease progression but may also lead us to take refuge from some of our own anxieties about death and our patients' seemingly intractable life circumstances. As physicians, it comes as a relief for us to be able to reduce the overwhelming complexity of AIDS to a simple causal relation in which the effects of our therapy are direct, timely, and measurable. However, it is important to always keep in mind that HIV disease is never reducible to the virus, that the ascendancy of a virologic model of pathogenesis should not obscure the human dimension in which HIV infection continues to be expressed. If we ignore this dimension, we run the risk of losing touch with our patients' lives, of treating the numbers instead of the patient, of focusing on the treatment regimen and not the person intended to take it. These tendencies may become even more prominent as HIV care becomes more specialized [6, 7], a development that makes the need for a patient-centered, comprehensive approach even more critical. We must not let the temptation of more sophisticated and complicated therapies lead us too far astray from this basic human relationship.

The skills that we learned earlier in the epidemic are still necessary to provide good patient care. First, an integrated, multidisciplinary approach to care, which was always important for effective HIV care [8], is now critical to improving adherence with complicated antiretroviral regimens. If anything, it is more important than ever to attend to the social, psychological, and logistic aspects of our patients' lives if we are to have any hope that our promising new therapies will be effectively used. Patients' trust in and satisfaction with their care providers is highly correlated with adherence and follow-up [9, 10]. Moreover, attention to such psychosocial factors as patients' belief systems and social supports, always part of good palliative care, have been shown to influence adherence [11, 12]. Effective interpersonal communication is a key element in promoting adherence and engagement with care [13-15]. In addition, good symptom management is still needed. A recent study of pain prevalence found that 38% of ambulatory HIV-seropositive patients reported persistent pain over a 2-week sampling period; other studies have shown that pain is consistently underrecognized and undertreated in patients with AIDS, as in other patient populations [16-19]. Although HAART clearly improves survival, the new multidrug combinations are often toxic and are associated with substantial adverse effects that may influence tolerability and effectiveness [1, 20-22]. Being able to treat these symptoms is critically important to improving both adherence to treatment and patients' quality of life.

Treatment beyond HAART: Accompanying Patients through Illness

The ability to effectively manage patients' viral loads, T cells, and combination antiretroviral regimens should also not distract us from the sometimes more difficult and necessary task of simply being there for patients for whom HAART is no longer effective. The availability of powerful new treatments should not cause us to lose sight of the inevitable fact that they sometimes stop working, cannot be tolerated, or are simply not accessible to patients on a real-world basis for various social, economic, or behavioral reasons. Our intense interest in new therapeutic options should not obscure the fact that patients still die of AIDS and that in some cases, we are no more able to stop the relentless progression of HIV disease than we were before the advent of antiretroviral therapy. Otherwise, we give the message that we are effective and worthwhile only as long as we are providing curative therapy and devalue the fundamentally important task of accompanying patients through an illness that we cannot cure. At such times, the role of the clinician should be to help patients and their loved ones come to terms with the fact that the promise of the new therapies cannot always be fulfilled.

Ironically, the success of the new therapies may make us less able to recognize and accept this fact and more likely to feel guilty or inadequate as clinicians. This is especially true when we watch our heavily pretreated patients-those who dutifully followed our earlier, well-intentioned recommendations on sequential monotherapy or dual nucleoside therapy-continue to worsen despite our efforts, unable to benefit fully from the new combination regimens. Our growing ability to treat HIV brings with it the parallel emerging possibility of failure and self-blame. Because we feel that we have failed the dying patient, we may respond defensively either by emotional withdrawal or inappropriate overtreatment. Our unwillingness to accept "defeat" should not keep us from seeing this clearly and helping patients through the last phases of the illness when the time has come. There are important tasks to attend to at the end of life for our patients and their families, and these tasks have psychosocial, emotional, and spiritual dimensions, as well as legal and financial ones [23, 24]. Many dying patients experience personal or spiritual growth as they seek meaning and closure in their lives [25]; our well-meaning or unconscious attempts to forestall the inevitable may interfere with this process and obscure what is really taking place.

The Balance between Curative and Palliative Care

In addition to the emotional background that may affect our clinical decision making [26], the current situation is further complicated by the fact that prognostic factors for HIV and HIV disease trajectories in the HAART era continue to change. Objective criteria for assessing the appropriateness of hospice referral or the discontinuation of antiretroviral therapy, for example, are uncertain except at the very end of life. Moreover, many clinicians have seen seemingly miraculous cases of the "Lazarus syndrome" after initiation of HAART in antiretroviral-naive patients with advanced HIV disease. These experiences make it difficult to know when to forgo further antiretroviral therapy. It must also be noted that in some situations, palliative care for HIV disease is indistinguishable from curative therapy-for example, long-term antiviral therapy to prevent blindness in sight-threatening cytomegalovirus retinitis or intravenous amphotericin B to permit oral feeding and relieve pain in azole-resistant candidiasis-and that the definition and practice of end-of-life care for patients with AIDS will continue to evolve with the continued advances in HIV therapeutics.

In this way, AIDS may come to resemble other chronic and treatable but ultimately fatal illnesses, such as end-stage pulmonary disease, congestive heart failure, and metastatic cancer, for which clinicians must continually readdress with their patients the balance of curative and palliative interventions as the disease process unfolds over time. Curative or restorative interventions predominate early in the disease course, whereas palliative or symptom-oriented measures predominate later, but these two approaches often coexist. It is a false dichotomy to consider these approaches strictly separate; this separation is implied, for example, in patients' hospital records when progress notes indicate an abrupt shift from "aggressive" to "comfort" care, as if to suggest that palliative care cannot be aggressive or that curative care cannot decrease symptom burden.

Empowerment, Failure, and Blame

For our patients, the inability to benefit from the new antiretroviral therapies may be perceived as a sign of personal failure, weakness, or bad choices. Ironically, there may now be more of a tendency to "blame the victim" in an era in which the hope of remission or cure is held up as a tantalizing possibility. Before the promise of therapy for AIDS, the virus exerted a grim equalization, a democratization of death that devastated at-risk communities yet sometimes united them in the face of a common fate. The notion of fate-universal, unyielding, and unavoidable-has been replaced by one of tragedy as fate becomes more selective, malleable, something that can be influenced by choices and individual action. This possibility holds up great promise and hope but also opens the way to guilt, regret, and blame. Unsuccessful empowerment can be experienced by patients as failure, and it is important for clinicians to anticipate this, in addition to anticipating their own self-doubts when their patients do not do well after taking the new therapies. The current stress on adherence may mean that when therapy is ineffective, patients are more likely to berate themselves for having missed doses of medication that, but for their failing to take it properly, would have saved them. Our language colludes in this self-blame when we casually speak about patients "failing their medication" instead of vice versa.

The success of the new therapies may have other unexpected consequences. For example, some patients may find having a "second chance" at life to be anxiety provoking. One such patient recently admitted to us, "Now I'm not so much scared of dying as scared of living." Many patients who had planned for their dying by selling their life insurance, leaving their jobs, and saying their goodbyes are now, with the advent of HAART, facing the daunting question of what to do with the rest of their lives. Others, having received disability insurance for years, are now challenged with the prospect of having to return to work. Helping patients to address the psychological, emotional, and economic consequences of the success of HAART should now be an integral part of HIV care [27].

For the larger community, it must be acknowledged that some of the normalcy of death caused by AIDS has thankfully been replaced by decreasing mortality statistics. Although this trend is clearly welcome, it has meant, ironically, that when death occurs, it can seem more aberrant, more unusual, more isolating. Rather than uniting patients and the larger community in an expression of mutual grief as the expression of a common fate, death now serves as an unpleasant reminder that the new treatments are not as potent as we would like them to be. This may lead to greater marginalization of dying patients, a loss of the sense of a common destiny that, although harsh, was softened somewhat by the community of shared experience. As a result, dying patients may feel even more cut off and alone as the community rituals of grieving and bereavement have faded from view [28, 29]. This requires our further sensitivity as care providers, with continued attention to the changing psychosocial and bereavement issues for patients and families.

A New Challenge

The early years of the AIDS epidemic in the United States, an era rapidly receding from memory, were a time of therapeutic helplessness, frustration, and, for many, despair. It was also a time in which some patients and their care providers were united in a kind of immediate, naked solidarity. Many clinicians learned or relearned the critical importance of accompanying patients through life-threatening illness, when patients valued above all else from their physicians the commitment not to abandon them to their fate. We now have the opportunity, for the first time, to substantially affect the course of HIV disease. Let us not abandon these older skills and sensibilities to our newfound expertise in managing the virus and juggling combination antiretroviral regimens. The challenge will be to continue and encourage the maintenance of a primary care mentality, with attention to the larger psychosocial issues, end-of-life care, bereavement, and a focus on the patient as opposed to the illness, in an age in which the antiretroviral paradigm is so triumphantly ascendant. Otherwise, the age of HAART will end up conspicuously lacking in heart as we run the risk of forgetting what we learned about healing from a disease that we could not cure.