Evolving Realities of Quality of Life
Being diagnosed with any chronic and potentially life-threatening illness can be a powerful motivation to examine your life and grapple with how to define what is meaningful. One of the most vague, and yet crucial, areas for such self-examination is determining how to increase your quality of life. As a long term HIV-positive non-progressor, this has certainly been true for me personally. Additionally, having worked with large numbers of psychotherapy clients who are living with HIV/AIDS, I routinely initiate discussions aimed at helping individuals determine what factors contribute to a satisfactory quality of life.
In the early days of the epidemic, the hopelessness of an AIDS diagnosis increased the urgency of the question: "How much am I willing to sacrifice quality of life just to extend my life?" Another question, though less urgent now than before, is: "What else do I want to accomplish before I die?"
Both personally and professionally, I have seen a radical change over the past 17 years in the way quality of life issues are framed. In September's FOCUS: A Guide to AIDS Research and Counseling, Robert Marks notes: "As combination treatment extends life, some people with HIV may exchange a threat to life for insults to the quality of life, as the debilitating but sustainable symptoms of antiviral therapy undermine feelings of health." He also wisely cautions that "both people living with HIV and providers may fail to recognize the fragility of improved spirit and may minimize, even yearn to minimize, the physical challenges of renewed health." Today, physical, emotional and interpersonal issues of renewed health form the core of quality of life concerns for all people with HIV, whether they are treatment naive, benefiting from combination therapy, or being bypassed by the so called "protease miracle." Taking these medications is not simply a matter of popping a few pills a few times a day. Rather, these drug regimens have a radiating effect, which profoundly influences eating, sleeping, and work schedules as well as day-to-day interactions with other people. All of these factors have an important bearing on a person's sense of well-being and confidence.
". . . quality of life is a balancing act, a matter of living fully in the moment while still planning for a future that is far from certain."
A Balancing Act
Assessing your quality of life is complicated by its often puzzling and changing character. It results from a complex interaction of many personal realities, character traits, and convictions, notably disease progression, emotional state, the nature and extent of the personal and professional support you are receiving, spiritual beliefs, maintaining hope and the ability to tolerate and respond to uncertainty.
Martin, a long-term non-progressor, says he feels that he has been balancing a level of what clinicians call "supportive denial" about having a potentially life-threatening illness against the realities of medically managing the condition. He never stopped saving for his retirement or making long-term plans. To maintain his emotional equilibrium, he made significant psychological accommodations, learning to live with the paradox of absolute uncertainty. "Most of the time I allow myself to really believe that I do have a chronic, yet manageable health condition," but one "that could be fatal." Even with new treatments, Martin feels both blessed by his undetectable viral loads and anxious about how long he will retain his health. For him, quality of life is a balancing act, a matter of living fully in the moment while still planning for a future that is far from certain.
Disability or Work
Individuals lucky enough to have had private disability insurance when the first antiviral drugs became available were faced with a major quality of life decision: whether or not to go on disability, retire early and give up a beloved career in order to spend their remaining time doing things other than working. In September's FOCUS, Lisa Capaldini, an HIV physician, researcher and long time activist, suggests that, when discussing quality of life, it is essential to remember that: "Different people have different priorities and these influence their quality of life concerns." The following two individuals made very different choices based on their personal priorities.
Barnaby was a brilliant attorney who loved practicing law. As he became progressively ill, his firm was supportive and made numerous accommodations in order for him to continue working. Following a hospitalization early in his illness, we explored his motivations for planning to continue to work as long as he could. We spent months discussing his feelings about retiring from the career that formed the core of his identity. He was unwilling to allow the illness to deprive him of work he loved. In the end, he continued to work until the combination of blindness from CMV retinitis and uncontrollable diarrhea made it virtually impossible for him to get to the office. Near death, he explained to me that he was pleased to have been able to work for so long. Not being partnered or close to his family, he was already spending quality time with his friends. He had traveled a lot, and there was not much else he had wanted to do during his lifetime. He explained that having the ability to work was practically the only thing that gave him respite from the ravages of his illness.
Jim, a designer and executive at a cosmetics firm, was a long-term psychotherapy client. He entered treatment long after he knew he was HIV-positive, because he was unhappy not being partnered. He was a charming, attractive, sensitive man, and we worked on his dating skills. Jim met and fell in love with a wonderful man who had already lost a partner to AIDS. These two carved out a private life together around their demanding work lives. When Jim's condition worsened, he eventually decided to retire from work and become a full time househusband at their country residence, which was not far from where his sister, her lover, and their child lived. He died having spent the end of his life close to these people he loved most in the world, doing what made him happiest.
A New Lease on Life
The onset of combination therapies has greatly complicated the quality of life equation. So many seriously ill people with HIV disease have seen significant improvements that combination therapies are described as producing a "Lazarus Syndrome," named for the biblical story about a man Jesus was said to have raised from the dead. HIV disease has now become a chronic and manageable illness for more than a small minority of those infected.
Many people responding positively to combination therapy say that their primary concern is financial security. While they could accept the prospect of living on a limited and fixed income so long as an early death seemed likely, this tolerance declined as their probable life spans lengthened. Cruelly, the fiscal resources of many long-term survivors have been depleted by their having previously opted to run their credit cards up to their limits, spend their life savings and viaticate their life insurance policies. These decisions, intended to improve their short-term quality of life, increase the fragility and vulnerability many long-term survivors and non-progressors now feel.
Perhaps the most noticeable change resulting from successful HIV treatment is a renewed capacity to participate fully in life. For some, this has meant a return to work, a change that has brought joy and fulfillment to many. For others, however, a range of psychosocial challenges, many of which can negatively impact a person's quality of life, lessens the excitement of returning to work. Some people find that a "clean slate" may be inspiring, but for most, having let go of the means and structure of a previous life becomes unsettling in the context of extended life. Adding to this confusion is the uncertainty about whether health recovered by combination therapy will be permanent, and by the understandable fear that working may mean that disability income will be lost forever. Trading off more free time for a work routine in order to earn more money can be a difficult emotional transition.
Additionally, people contemplating a return to work may experience a sense of failure and regret, a fear of having lagged too far behind to catch up, grief over lost dreams and opportunities, anger at themselves for not trying harder to overcome disability, and psychological paralysis. These feelings may be fed by the practical challenges of dealing with resumes that are no longer so impressive and professional skills that are no longer up-to-date. In addition, individuals re-entering the job market at the same level they had been at when they stopped working may now be competing for jobs with people who are younger than they are.
The case of Eric, completely blind at age 23 as a result of AIDS-related CMV, offers a poignant illustration of how a sense of well being is directly related to life expectancy. Successfully responding to combination therapy, he began once again to make plans, learning to walk independently with a seeing eye dog, joining a gym to regain weight, beginning a new relationship, and joining a support group for the visually impaired, where he became a role model for other group members. Despite these improvements, Eric stressed that his motivation to rebuild his life hinged on the thought that his time was limited. He has not made peace with the prospect of growing old as a blind man, feeling that this would entail an unacceptable quality of life.
The Impact of Side Effects
People with HIV/AIDS routinely have to make important 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 or not to stop combination therapy altogether. It might seem ridiculous for an individual to even consider not initiating combination therapy, given its life-extending potential. But there is plenty of reason for uncertainty, especially for individuals who are treatment naive since there is considerable disagreement about the best time to begin therapy.
If an individual decides to begin combination therapy, he or she must determine which combination will be right for them. It is helpful at this point to make a list of life priorities and how these might be affected by various medications. For example, if spontaneous socializing around meals is something you cherish, you may not want to take drugs that require precise scheduling of medication and meals. Juggling medication schedules and meal times can make a person feel trapped. If you are very athletic or travel a lot for business, you may opt not to try medications that may cause diarrhea. You need to consider the possible negatives, such as the potential indignity of soiling yourself, of needing to stay close to a bathroom, or the need to take anti-diarrheal medication. If you work at home with ready access to a bathroom, diarrhea may not be as big a concern.
"People living with a potentially terminal illness often feel burdened by the societal construct that the extension of life -- at any cost -- is the only or best option."
Individuals facing choices about beginning treatment need to speak with or read accounts by other people who have been on the drug or regimen in order to hear real-life reactions. For many people, side effects may be perceived as the primary effects of the medications -- and in the short term they may seem more serious than HIV infection. They can be a valid reason to alter the course of a medication regimen. Side effects are significant when they limit mobility or otherwise prevent people from going about their normal routines. Even relatively minor side effects, such as flatulence or excessively dry skin and scalp caused by Crixivan or loss of body hair sometimes caused by Epivir (3TC), impact how a person feels about himself by possibly impairing self-esteem and self-image. This must be factored into the emotional cost of taking various drugs.
Both treatment success and failure have raised the bar regarding quality of life expectations for people with HIV/ AIDS. Capaldini writes, "Four years ago when people with HIV were relieved not to be dying or hospitalized, medication side effects were a welcome exchange for longer lives. Now as they extend over the long term, side effects have become less tolerable. Many people with HIV have unexpectedly tasted the possibility of normal lives, and are reacting to the limitations imposed upon them by diarrhea, peripheral neuropathy and fatigue."
When wrestling with these decisions, it can be helpful for a medical and/or mental health professional to acknowledge that treatment dilemmas often pose trade-offs. There should also be frank acknowledgment of the difficulty of achieving a viral load below the level of detection. Each individual needs to examine his or her feelings about what they might have to put up with in order to try to achieve this goal. Capaldini urges medical providers to "attend to a person's symptoms and side effects even when, after applying quantitative criteria, treatment seems to be successful. The easiest mistake a medical caregiver may make in the new era of HIV treatment is to falsely assume that improving viral load and CD4 cell readings translate into feelings of day-to-day well being."
Recently there has been much discussion of the therapeutic effects of "structured treatment interruptions." Although still under study, this new approach is welcome news for people on antiviral drug regimens, holding out the prospect of periodic relief from potentially debilitating side effects. These medically supervised "drug holidays" have also greatly improved people's emotional states even while creating an additional potent anxiety related to all of the medical uncertainties.
Living Long or Living Well
People living with a potentially terminal illness often feel burdened by the societal construct that the extension of life -- at any cost -- is the only or best option. Medical and mental health professionals can help people who question this belief by providing support for alternative views, including those that center on the life priorities and capacities of the individual. Such conversations can help people assert control over their lives, turning the burden of decision making into a life-affirming and empowering challenge.
People with HIV often experience anxiety when they are awaiting the results of blood work. Downplaying the importance of the numbers can have a positive psychological effect. People on combination therapy should steer away from an either/or view of what constitutes treatment success or failure. Instead, try to think in terms of a spectrum extending from the achievement of a level of viral replication that is beneath the detectable level, including symptom reduction but incomplete viral suppression, to a high level of viral activity and continued CD4+ cell depletion. Such an approach speaks to the reality that a number of people with HIV have not only survived, but thrived, on combination therapy for more than three years, requiring re-evaluation of the old HIV disease model of "infection -- latency -- sickness -- death."
Thomas, a 50-year-old living in Manhattan, illustrates this point . "Combination therapy has not made my viral load undetectable, but it has still been a godsend, and I am not complaining, despite the side effects. The few KS legions I used to have are now gone, and my CMV retinitis has not gotten any worse. Prior to beginning these drugs I would also become confused at times, which my physician assumed was a neuropsychiatric complication of HIV. This symptom is also a thing of the past. I feel like I have regained my life. My first year on combination therapy was focused on regaining my health. The second year was about allowing myself to slowly develop a cautious optimism that these treatments were going to benefit me on a long-term basis. This third year has been about the challenges of improving my quality of life in terms of resuming my career and attempting to regain some kind of financial stability for the rest of my life, no matter how long that will be."
In the end, it is each individual who sets their own quality of life agenda, always in light of the existing medical and psychosocial options. For anyone to reach informed decisions about treatment, each person will need help in the form of treatment education and information. Some people are comfortable evaluating the existing medical options and their subsequent physical and emotional consequences on their own or through conversations with friends, family members or peers. Others benefit from professional counseling to sort through all the information and accompanying feelings. However, only after an individual has accepted his or her own responsibility for their role in the decision-making process, can health-care professionals provide them with the necessary guidance. This way, each person living with HIV and the members of his or her health care team can strive together towards insuring that quality of life goals are always a priority.
Michael Shernoff, M.S.W. is a psychotherapist in private practice in Manhattan who has written extensively on mental health issues of people with HIV/AIDS and of gay men. His most recent books are HIV Treatment: Mental Health Aspects of Antiviral Therapy and AIDS and Mental Health Practice: Clinical and Policy Issues.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication CRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.