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, benefitting 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.
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
Athat 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.
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 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 nor 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.
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.
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.
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 and 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.
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 reevaluation 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, MSW 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.
Key Words: HIV/AIDS, Combination therapy, medical decision making, quality of life