The proliferation of new medical options for people with HIV comes as a welcome respite. Particularly compared with the earlier days of the epidemic, HIV infection and even clinical AIDS are no longer "death sentences." Yet the very expansion of options has made treatment decision making more difficult. For many, the sense of urgency about treatment decision making and timing creates a potent anxiety. Complicating this is the reality that while standard therapies have been published, many physicians, especially those who are not HIV specialists, are unsure about or unfamiliar with them and fail to adequately manage patients with HIV. As a result, people living with HIV/AIDS (PLWHAs) are faced with the need to make a number of decisions about treatment: whether or not to begin combination therapy; when to do so; whether to change treatments in response to an increase in viral load or intolerable side effects; and, in some cases, whether to stop combination therapy.
The First Decision: When -- and Whether -- to Begin Antiviral Therapy
At first glance it might seem ridiculous for an individual to even consider not initiating combination therapy considering its life-extending potential. Yet, the data is far from clear on this question. Especially for individuals infected with HIV who are "treatment naive" (that is, those who have never taken an antiviral drug), there is considerable uncertainty about when it is best to begin therapy. However, one matter about which almost all the experts are certain is that no one should begin monotherapy, that is, treatment with a single antiviral drug. In order to prevent resistance, and to be most effective, these drugs must be taken in combination. Combinations often includes drugs from at least two of the currently existing different classes of antiviral drugs, although there are some regimens that include three drugs from the same class, or drugs from three different classes of antiretrovirals.
"Uncertainty" is perhaps the key word and concept that best describes one of the major dynamics faced by people confronted with the choice of when is the best time for them to begin combination therapy. Such uncertainty is a constant issue and dynamic for all people with HIV and AIDS, but especially individuals who are contemplating beginning or are currently on HAART (Highly Active Antiretroviral Therapy).
If a seropositive individual is treatment naive and is in good health, there are conflicting theories about when is the best time to initiate treatment with combination therapy. One school of thought, highlighted in a 1995 article by Dr. David Ho, declared that it is "Time to Hit HIV, Early and Hard." The "hit early and hard" perspective acknowledged the body of evidence that the untreated virus is doing damage even in asymptomatic people with HIV and encourages people who are asymptomatic to begin taking combination therapy as soon as they know they are HIV-positive. The evidence that early intervention with antivirals is effective has been compelling enough that many major AIDS service organizations have issued policy statements urging all people at risk for exposure to HIV to get tested so that they can begin treatment as early on in the disease process as possible.
Despite the enthusiasm for hitting early and hard, however, the approach is not universally endorsed, especially as hopes of viral eradication (i.e., complete elimination of HIV from the body of an infected person) have proven unfounded. One of the most notable voices of caution has come from pioneering AIDS virologist Jay Levy, of the University of California, San Francisco. Citing concerns about the need to take antiviral medication indefinitely, on a strict schedule, and with serious potential side effects and drug interactions, Levy asks, "With these concerns, are we then choosing the right direction by giving these drugs to all infected individuals who have evidence of virus in their blood? Would we not serve infected people better by reserving certain therapies and administering them at a time when their use is clearly required?" Levy also discusses the importance of preserving the immune system's capacity to fight the virus. Among individuals who have gone off combination therapy, he notes that there is often a dramatic increase in viral load, suggesting "that the immune system has either been compromised by the drugs or 'put to rest' by the therapy. Without exposure to a sufficient amount of viral antigens the ability to recognize replicating HIV is lost. Thus the host, off treatment, cannot respond effectively to a re-establishment of productive virus infection." Following Levy's line of thought, some people with HIV -- including many who are highly sophisticated about treatment are opting to postpone treatment for as long as possible. Indeed, several organizations around the country conduct support groups for individuals who choose to not begin any form of antiviral therapy.
Questions in the Decision Making Process
Counseling can play an important role in helping PLWHAs figure out whether they are ready to act on a physician's suggestion to begin combination therapy, and if so which combination will be right for them. One practical way to begin this important process is to make lists of what is most important to them and how the decisions they are facing will impact on various aspects of their lives. For instance, if spontaneous socializing around meals is something the person cherishes, then he or she may decide not to begin taking Indinavir which requires very precise scheduling of both medication and meals. If a person is very athletic, or travels a lot for business, he or she may decide not to begin taking medication that will likely cause diarrhea.
"Factors that go into making treatment decisions are so varied that it is truly difficult to format the complex thinking into words," explained Charles Carpenter of Brown University Hospital. "For those who do not want to initiate aggressive triple combination therapy including a protease inhibitor, I generally recommend that no therapy at all, with monitoring of plasma viral loads quarterly is generally preferable to beginning dual nucleoside therapy. In such instances I try to work out with each patient a virtually agreed upon measurement (e.g. when the plasma viral load exceeds 40,000) which will eventually trigger initiation of triple therapy."
To Cal Cohen of CRI/New England, "the primary issue is a person's interest/enthusiasm to take medications. If the patient is ambivalent, I'd rather wait a bit and have them try taking vitamins to see how it feels to take pills regularly." Michael Lederman of Cleveland, Ohio said, "I am not eager to begin therapy unless the patient is committed for the long haul and prepared to make adherence to the regimen a major priority." Michael Para of Columbus, Ohio stressed, "I don't decide, the patient does. I may recommend it but will go along with almost all patient wishes if they are informed and understand risks/benefits." Rona Vail of Gouverneur Hospital in Manhattan stated: "I believe that ability to adhere to treatment is the strongest decision point for beginning treatment. I would rather have the patients hold off on therapy than to take it and not be committed to it."
One barrier to the use of combination therapy, and a very real concern that has to be explored by all people considering it, is that current recommendations are that once started, these drugs may need to be taken for the rest of an individual's life. For individuals who may have become infected in their twenties or thirties, the specter of sustaining a demanding drug regimen for decades is understandably daunting. For example, some of the protease inhibitors must be kept refrigerated, and must be taken on a very precise schedule that involves coordinating them with meals and other medications. Others must be taken with food, while still others must be taken either two hours after eating or one hour prior to eating in order to assure effective absorption of the drug. In addition, some medications require drinking large quantities of water daily in order to prevent the onset of kidney stones, and perhaps more during the summer when the risk of dehydration is greater. Thus, if an individual is concurrently taking ddI which also has to be taken either two hours after eating or one hour before eating, but cannot be taken at the same time as Indinavir, the scheduling of dosages becomes a nightmare. To this must be added the fact that most people with HIV already coordinate an extensive regimen of drugs for other conditions.
"I was an attorney before I went out on medical disability," explained Bob, a psychotherapy client. "Managing my medical care and prescriptions, and monitoring when and how each needs to be taken has become my full time job. I've put it all on my computer. There is simply no other way I could keep track of it all." Even the most sophisticated consumer of medical care, who has the capacity to organize his or her own life, can find managing the required scheduling of anti-HIV drugs a daunting task. For parents of children with AIDS, many of whom are single mothers themselves infected with HIV, making certain that they and their children adhere to the rigorous medication schedule is often nearly impossible.
Thus, mental health professionals, and the PLWHAs with whom they are working, have to first educate themselves about the difficulties in taking combination therapy in order to be ready to work with clients to evaluate the issues related to beginning and maintaining treatment. The following are the tasks necessary to tackle when PLWHAs are contemplating beginning combination therapy:
- Understanding that there now exists a new approach to treatment that may help prolong their lives.
- Translating the realities of the difficulties in taking these drugs including that they may have severe side effects and may have to be taken for the rest of a person's life (it is important to note that research is pursuing alternatives to the scenario of life-long treatment).
- Evaluating if they want to begin this new treatment.
- Asking if the rigorousness of the adherence issues make these drugs a viable option for them.
- If drug therapy is begun and then stopped, restructuring the experience from one of failure and pathology to a self-empowering decision about their own health care.
It is important to note that society does not encourage anyone to advocate for him or herself in medical settings. But, when a person is middle class and well-educated, it may be easier for him or her to be a sophisticated and demanding consumer of health care. When a person is poor and less educated, he or she may be more likely to have had little experience in advocating with doctors, nurses, and health care institutions and agencies. Thus, some clients need to be supported and coached on how to go about becoming empowered, self-advocating consumers of medical care without necessarily becoming adversarial.
Patient-Doctor Medical Decision Making: A Framework
Baruch Fischoff and Julie Downs have conceptualized a multipart strategy to assist people faced with making important medical decisions. The first step is for the individual to identify his or her options. Traditionally, patients have relied on their health care professionals to research and present treatment and care options. But the People With AIDS self-empowerment movement has encouraged all people living with HIV to become well-informed and sophisticated consumers of health care, in order to enter into a healing partnership with their health care professionals. Especially in the area of combination therapy, where there is no one agreed upon standard of care, the person's personal understanding of the consequences of each potential decision is crucial. Once all the options have been identified, it is then necessary to be sure that ramifications of each option are clearly understood. It can also be useful to write down questions in advance of seeing their physicians.
The second step in the decision-making process is to address the uncertainties inherent in facing a large field of choices. Once the options are understood, people "can focus on how likely it is that the consequences will come to pass." It is often helpful to the individual wrestling with these monumental decisions to hear from a member of his or her treatment team that indeed "treatment dilemmas often pose irreconcilable trade-offs." For example, it can be very validating for there to be an acknowledgment that there will be difficulties in juggling medication schedules and meal times to allow for a three hour window when the person can not eat, and thus loses the ability to spontaneously eat at will. Additionally since several of these drugs cause diarrhea, it is useful to acknowledge the potential discomfort, the inconvenience of needing to either stay close to a bathroom, the need to take other medication to control the diarrhea, and the potential indignity of soiling oneself. It is important for there to be a realistic assessment of the difficulties likely to be encountered in order to achieve a viral load below the level of detection, and come to grips with all of one's feelings about what will have to be put up with in order to try and achieve this goal.
This leads to the third part of decision making: developing an understanding of as many of the consequences as possible in advance of actually choosing a particular course of action. It is important to consider trade-offs, for instance, in determining whether a PLWHA wants to take a drug that has the potential to extend life while leaving him or her with chronic fatigue, nausea, diarrhea, and disrupted sleep. In order for the decision making to be as informed as possible, the potential consequences have to be as specific as possible. Individuals facing choices about beginning treatment drugs need to speak with or read accounts by other people who have already been on the drug or regimen in order to hear real-life reactions. People also often feel burdened by the societal construct that the extension of life "at any cost" is the only or best option. Those who question this belief should consider alternate views, including those that center on personal values about the kind and quality of life a person desires and feels able to manage. This attention helps PLWHAs to assert control over their lives, thus turning the burden of decision making into a life-affirming challenge.
Coping with Uncertainty
Once they begin to take antiviral medications, many people feel uncertain whether improvements will hold up over time. This uncertainty is not ill-founded, since the long-term effectiveness of combination therapy has not been established (although with each passing month the durability of therapy has continued to be confirmed) and creates a potent anxiety.
Robert Remien and Glenn Wagner developed a model for counseling long-term survivors prior to the advent of combination therapy, work that takes on increased significance in the new world of HIV treatment. They write that one challenge facing long-term survivors is coping with the uncertainty of future health, which makes it difficult to plan for the future. They also suggest that other issues to consider include: responding to grief and multiple loss; difficulties accessing support networks; managing romantic relationships; handling the relationship with a primary physician; navigating treatment options; attending to progressive symptoms; and confronting career matters. All of these issues remain active for the individual responding well to combination therapy. Remien and Wagner go on to enumerate the corresponding therapeutic tasks: "validating emotional reactions; focusing on short-term goals; facilitating feelings of empowerment; helping clients obtain concrete services; assessing psychiatric risk and suicidal ideation; promoting adaptive coping strategies; fostering family communication and cooperation; and talking about the meaning of death and dying."
For some people the reality of unanticipated survival may present a period of difficult readjustment, with some patients feeling overwhelmed, depressed and even suicidal. Remien and Wagner note that "to carry on, clients may need help in finding new meanings in their lives. Sources of pleasure and satisfaction need to be reexamined so that goals become focused on obtaining the most out of the present" while at the same time planning realistically for an uncertain, but likely future. Studies demonstrate that an active behavioral approach to coping with HIV illness is associated with a decrease in psychological distress in the context of HIV infection."
People whose health has rebounded may also need to mourn their recently acquired identity as an ill and disabled individual. Michael Ignoffo discusses taking a reality therapy approach to "quality living when there is no cure." He states, PLWHAs "need to feel that they have regained control over their lives. In addition, they need to feel that they still belong to the world of the living. Furthermore, they need to look forward to being able to manage the rest of their lives as well as to face their eventual deaths with a sense of both responsibility and serenity. Ultimately, they need to understand that AIDS and death are not the uncontrollable terrors which they seem to be."
For some people grappling with these issues, spiritual issues such as the meaning of life and death and the possibility of an after life come to the forefront. Avi Rose states that those people with HIV disease fortunate enough to be doing very well "face a complex set of issues in going about the profound task of reconstructing the future and balancing the issues of hope, uncertainty, meaning, and survival." He continues by noting that among the large questions that remain for all people living with HIV, even those now doing well are:
- How long will the new treatments remain effective?
- Will my particular strain of the virus become resistant to my treatment?
- What are the short-term and long-term side effects of these new drugs, and what side-effects might develop over time?
- Will the next wave of treatment alternatives arrive in time for me to benefit from them?
- If these new treatments do arrive, will they be made available to everyone who needs them?
- What happens if I make major life changes based on how I am currently feeling, get sick again, and feel more vulnerable, physically, emotionally, and financially, than I ever did before?
Most people carry around "an illusory and exaggerated sense of control" which needs to be relinquished in order to maximize adaptive coping to life crisis like living with a life threatening illness. Rose then suggests the need to learn to distinguish between what can, within constraints of environment, health and economic circumstances, be controlled, (for example, current and future life decisions, health care choices, and personal goals) and what cannot be controlled (for example, being infected with HIV, the past, other people's behaviors, and who your parents and siblings are). Further, he suggests that it is often therapeutically useful to pursue an examination of the cultural meanings of control, which some people pursue unrealistically, and others abandon out of a sense of despair or defeat.
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This article was adapted by the authors from HIV Treatment: Mental Health Aspects of Antiviral Therapy (University of California, San Francisco (UCSF) AIDS Health Project Monograph Series, 2000). Michael Shernoff, M.S.W., is a psychotherapist in private practice in Manhattan. Raymond A. Smith, Ph.D. is editor of Body Positive magazine.