"Making Decisions About Antiviral Treatment"(This excerpt is from HIV Treatment: Mental Health Aspects of Antiviral Therapy, pages 33-44. This book is geared for social workers and psychologists but can be helpful for anyone making treatment decisions.)
Helping Clients Make Treatment Decisions
One way to begin the life-changing conversation with clients facing complex treatment decisions is to suggest that they make lists of what is most important to them and how the decisions they face will affect various aspects of their lives. For instance, if spontaneous socializing around meals is something the client cherishes, then he or she may decide not to begin taking indinavir, which requires precise scheduling of both medication and meals. If a client is very athletic or travels a lot for business, he or she may decide not to begin taking medication that will likely cause diarrhea. At the same time, therapists should engage with clients to evaluate how well they cope with ambiguity and uncertainty and determine how clients feel about the fact that there is usually no "one right answer" when it comes to treatment options.
A survey in Treatment Issues, a newsletter published by GMHC, quotes several physicians about their approaches to helping clients make treatment decisions. "Factors that go into making treatment decisions are so varied that it is truly difficult to format the complex thinking into words," Charles Carpenter of Brown University Hospital explained. "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 (for example, when the plasma viral load exceeds 40,000) which will eventually trigger initiation of triple therapy."53 Cal Cohen of Community Research Initiative (CRI)/New England explained, "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."53
Michael Aldermen, a physician from 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."53 Michael Para, a physician from 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 the risks/benefits."53 Rona Vail of Gouverneur Hospital in Manhattan said, "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."53
To help clients evaluate issues related to beginning and maintaining treatment, mental health providers should be prepared to:
Explain to clients that there now exists a new approach to treatment that may help prolong their lives;
Help clients evaluate if they feel that they want to begin this new treatment;
Communicate to clients the difficulties of taking these drugs, including the possibility of severe side effects and of lifelong treatment (although it is important to note that research is pursuing alternatives to the scenario of perpetual treatment);
Discuss with clients the challenge of adherence;
It is important to note that, by and large, society does not encourage anyone to advocate for him or herself in medical settings. But, it is easier to encourage a middle-class and well-educated client to be a sophisticated and demanding consumer of health care. When a client is poor and less educated, he or she is likely to have had little experience advocating with doctors, nurses, and health care institutions and agencies. It is, therefore, necessary to support and coach some clients on how to become empowered, self-advocating consumers of medical care without necessarily becoming adversarial. Hospital social workers play an especially vital role in communicating patient decisions about combination therapy to medical colleagues, seeking to do so in such a way that medical staff will not view these patients as non-compliant or self-destructive. It is important that patients who cannot or choose not to employ combination therapy are seen as having made a treatment decision that is correct to them at the present time. Finally, if clients, after beginning combination therapy, decide to discontinue treatment, it is important for providers to help them redefine the experience, to ensure that clients see it as a self-empowering decision about health care rather than as a failure or the result of pathology.
Medical Decision Making: A Framework
Baruch Fischoff and Julie Downs, researchers at Carnegie-Mellon University, have developed a multipart strategy to assist people faced with the task of making important medical decisions.54 The first step is for the client to identify his or her options. Traditionally, clients have relied on their health care professionals to research and present treatment and care options. But the AIDS self-empowerment movement has encouraged 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 common standard of care, a client's understanding of the consequences of each potential decision is crucial. Once the options have been identified, the provider must work with the client to ensure that he or she understands the ramifications of each option. It is useful for clients to write down all their questions before 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 clients understand their options, they can focus on how likely it is that the consequences will come to pass."54 Fischoff and Downs urge clinicians to avoid vague terms such as "rarely," "uncommon," or "likely," because clients are very good at remembering and interpreting actual numerical data about potential outcomes, efficacy, and side effects. This is especially useful for people pondering whether to begin an existing treatment protocol or to wait for the results of a clinical trial that may give them clearer information in the near future.
It is often helpful for the client wrestling with these decisions to hear from a member of his or her treatment team that indeed "treatment dilemmas often pose irreconcilable trade-offs."54 For example, in evaluating a regimen that includes indinavir, it is important to acknowledge that there will be difficulties in juggling medication schedules and meal times to allow for a three-hour window (two hours prior to taking the drug and one hour after taking it) during which the client cannot eat. Additionally, since several antiviral drugs cause diarrhea, it is useful for providers to acknowledge the potential discomfort, and the inconvenience of either needing to stay close to a bathroom, taking other medications to control the diarrhea, or suffering the potential indignity of soiling oneself. It is important for the provider to help the client come to a realistic assessment of the difficulties likely to be encountered in order to achieve a viral load below the level of detection and to elicit all of the client's feelings about what he or she will have to put up with to try and achieve this goal.
This leads to the third part of the decision-making process: developing an understanding of as many of the consequences as possible before actually choosing a particular course of action. It is important for the client to consider trade-offs, for instance, in determining if he or she 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 need to be as specific as possible. Individuals facing choices about beginning treatment should speak with or read accounts by other people who have already been on the drug or regimen to learn about real-life reactions. Clients often feel burdened by the societal construct that the extension of life -- at any cost -- is the only or best option. Providers can help clients who question this belief by offering support for alternate views, including those that center on personal values about the kind and quality of life a client desires and feels able to manage. This attention helps clients to assert control over their lives, thus turning the burden of decision making into a life-affirming challenge.
Culture and Countertransference
While counseling clients with HIV disease may require providers to be directive at times, helping clients make treatment decisions is a quintessentially client-centered process. But it is also one particularly prone to the effects of a provider's own perspective about health care and medical approaches to HIV disease. Two areas in which such perspectives may undermine the counseling process are the lack of cultural competence and the presence of unacknowledged countertransference.
The Effect of Culture on Treatment Decisions
Attitudes toward health and health care are very much influenced by a person's culture. Health may be perceived as related to everything from spiritual balance to fate to a divine response to sin. Health care may be affected by issues of economic access and racial or ethnic marginalization. It may also be associated with cultural attitudes toward governmental institutions or quasi-governmental institutions. For example, many people of color in the United States -- reflecting experiences ranging from the Tuskegee Institute syphilis experiments and forced sterilizations to diminished access and quality of care available to poor people -- historically have a high level of distrust of what is perceived as the White-dominated, Euro-centric health-care system, at variance with their cultural values regarding health, illness, and help seeking.55 Understandably, the legacy of these experiences continues to exert a powerful influence on many marginalized populations, instilling in them an unwillingness to trust the existing medical system; in the context of HIV, this may lead to disbelief in theories about causes and treatments and the motives of health care providers and health care systems.24
For some cultural groups, language may be a barrier, particularly in the context of communicating about complex topics such as treatment. But culture implies a whole set of ways of living that go beyond language to either support or undermine the process of making and implementing treatment decisions. For example, Columbia University researcher Alex Carballo-Dieguez notes that while the main problem for Latinos dealing with HIV treatment is access to medical care, other culturally influenced behaviors may affect treatment: "Many of the medications have regimens which require a very structured lifestyle, but many Latinos have a different relationship to time, such as having their meals at hours that may differ day by day."56,57
The variety of cultural influences is staggering, and seeking to understand them may lead counselors, however well-informed, to construct stereotypes that will interfere with the individuality of each client. As San Francisco therapist and researcher Amanda Houston-Hamilton states:
Counselors establish cross-cultural credentials with clients not by showing off bits of knowledge about the traditional behaviors or beliefs of a group, but by regularly demonstrating an openness to learning about the forces that affect clients. . . . To this end, it may be useful for providers to consider every client interaction to be cross-cultural and to wonder out loud and without interpretation when they encounter behaviors that seem inappropriate or incomprehensible. . . . It is essential to go through an explicit process of uncovering expectations and determining with the client the parameters of an appropriate exchange.58
While counselors may learn about culture from colleagues, consultants, friends, and acquaintances, clients are the greatest teachers about themselves and their cultural perspectives. Counselors helping clients make treatment decisions must remember this and use client-centered counseling skills to uncover the meaning of health and treatment as a way of helping clients clarify their own values.
Countertransference and Bias
This approach is also crucial when dealing with the countertransference that inevitably arises as counselors watch clients make decisions about treatment. In practice, countertransferential biases are similar to cultural ones. Both involve the overlay of the counselor's perspective on the client's, both may interfere with the counselor's ability to help the client make decisions that are consistent with the client's values, and both are remedied by a strong commitment to a client-centered approach.
In the context of HIV treatment decisions, countertransference may manifest in a variety of ways. For instance, if a counselor is a strong believer in nontraditional healing methods, this can be a useful resource to bring to the client's process, but it can also be a potential liability if the counselor is unable to explore and support the client's decisions to employ more conventional medical approaches to HIV. Alternately, if a clinician is a strong believer in the appropriateness of early medical intervention, he or she may communicate disapproval to a client who chooses to wait before starting on medication. For all counselors working in the epidemic, the issue of antiviral treatment may raise feelings about illness, physical and mental deterioration, and their own mortality. For counselors who may for some reason identify strongly with the epidemic, the challenge may be even greater: if the counselor is a parent, a gay man, or a person living with HIV, for instance, countertransferential conflicts may be especially problematic. For this reason, regular, ongoing supervision is an essential component of working with clients facing HIV.
Two hypothetical case studies (a composite of actual cases using fictional names for both the client and therapist) offer some insights into dealing with the range of personal feelings and biases that may enter into the therapeutic dyad and undermine therapy. Focused, in particular, on treatment decision making, they suggest the importance of dealing with these feelings in the context of any HIV-related treatment issue.
Gladys and Sarah: Caring Too Much
"Gladys Staley, PhD" is a 40-year-old seropositive, second-generation White American of Irish-Scottish descent and a psychologist who works in the AIDS program of a major New York City hospital. She has been on combination therapy since 1996, has experienced relatively minor side effects, and has achieved a viral load below the level of detection.
"Sarah," a young, professional, African American woman initially consulted Staley about her fears of taking an HIV antibody test. After Sarah received a seropositive test result, she began ongoing therapy with Staley, which was available to her as a client of the hospital's AIDS clinic. Staley also used these sessions to introduce Sarah to the idea of examining her role as caretaker within her family and her feelings about being in this role.
In the weeks following Sarah's HIV diagnosis, Staley took a psychoeducational approach, eliciting Sarah's feelings and concerns about having tested HIV-positive and exploring ways in which Sarah might disclose this information to her family. As Sarah had predicted, her mother and sisters were frightened by her news. Sarah and her family saw Staley for six sessions of family therapy, during which the therapist educated family members about HIV, validated their feelings and reactions, and helped them attain a realistic assessment of Sarah's health status. Staley also referred Sarah's mother to a group for mothers whose adult children were living with HIV.
As the family crisis resolved, Staley provided Sarah with a variety of articles and HIV-related internet site addresses about treatment options. Although Sarah felt fine physically, her blood work indicated that she had a low CD4+ count and an extremely high viral load. During an early supervision session, Staley said, "I felt that this indicated that Sarah was an ideal candidate for antiviral treatment and shared this opinion with her -- without pushing her in any direction." When Sarah decided, at least temporarily, not to start any treatment -- despite a recommendation from her doctor -- Staley acknowledged that she began to feel frustrated with Sarah. "When I explored her reasons for not beginning antiviral treatment at this time, she explained that since she was not yet ill, she did not want to use up any treatment options. I explained that there were reasons to consider early treatment, especially with such a high viral load, but Sarah told me that she had never completely trusted traditional western medicine, and she felt that there were too many uncertainties about the drugs, their side effects, and long-term impact for her to be willing to begin taking them."
When Staley pushed Sarah to explore her reluctance to initiate treatment, Sarah said that she did not want to face the side effects of medications because she had just begun a demanding new job. Sarah said she was afraid that treatment would impair her vitality, energy, and independence. She also explained that her schedule was unpredictable, and that she was not confident of her ability to take the drugs on a precisely timed schedule. As Staley explored various options with Sarah, Sarah's frustration only grew. Finally Sarah said, "Even if I could handle the drugs, what proof do I have that it's not another Tuskegee?* I've heard of plenty of people who have failed on the drugs, plenty who just got sicker -- even if they got better for a little while!" Staley responded cautiously, "I can understand that you might be concerned about side effects, and I think we should talk more about this, because there are many people who successfully balance demanding jobs and antiviral treatment. Perhaps we should also talk a little about why you think this might be a conspiracy, when these efforts are really focused on getting you to feel well."
Sarah continued cautiously, "Well, you might not understand, but I just can't get the history of Tuskegee out of my mind. Lots of my friends talk about it, and it is only one example of a time that the government has lied to Black folk. Stranger things have happened." Surprised, Staley said, "Well, I'm sure we can help you put these fears behind you. After all, as an educated woman, you don't have to take on other people's paranoia. Then we can tackle your real concerns about fitting treatment into your life." Staley spent the next five minutes reminding Sarah about the evidence for the efficacy of antiviral treatment. Staley then went on to suggest that she and Sarah bring in some of these treatment articles to review together.
Staley recalled, "Although I believe that I behaved clinically appropriately and kept exploring her reasons for not wanting to start treatment, in hindsight it is clear that my judgments about her decision were having a negative impact on our relationship. But I was blind to this effect. I believed Sarah needed information to make an educated decision. When she chose to behave in a way that I did not feel was in her best interest, I began to treat her as a disappointed parent might treat her child."
Staley continued, "And I really missed the boat on the Tuskegee reference. I know about the experiments -- and how horrible the real Tuskegee incident was -- but I just could not see how an educated -- a brilliant -- woman could buy into these AIDS conspiracy theories. I grew up with parents who blamed everything on the English, and who tried to fill me with superstitions, but they were simple country folk. As a child, I knew they were just scared and ignorant. I got an education so that I could be more in control of my life than that. I thought Sarah was the same."
Much to Sarah's credit, she discussed with Staley the change in Staley's attitude. "Up to that point, I had not been aware that my feelings were contaminating the therapy," Staley reflected. "I did not feel it was appropriate to share with Sarah that I had struggled with this exact issue only a few months earlier. Yet I could not move beyond the feeling that I wanted to shake her and scream that she was playing with her life. When she raised Tuskegee, I felt she was really grasping at straws, and it took me right back to arguments with my parents." Eventually, Sarah requested a transfer to another therapist. As Staley explored Sarah's reasons for wanting to change therapists, she realized that Sarah was, after all, behaving appropriately and in an informed way that reflected Sarah's experience and perceptions -- ones that were different from Staley's. Further, Staley became aware of the irony of the situation: her unwillingness to acknowledge their differences had made it impossible for therapist and client to establish an alliance.
During their final sessions, Staley told Sarah that she respected her decision and saw it as an example of Sarah's skill at taking care of herself. Staley also urged her to continue to be as "take charge" with all members of her health-care team as she had been with Staley. Their last session was warm, and both women became teary upon saying good-bye.
As a result of Sarah's termination, Staley sought private, outside supervision, during which Staley more clearly recognized Sarah's decision as a good one. "I only wanted to help this woman who I really liked and identified with. Clearly one problem I had was that I overly identified with her and wanted to protect her." Staley's supervisor, "Rosalind Wells, PhD," explored Staley's feelings of being powerless to do anything to influence the course of HIV progression in her life other than to be aggressive in traditional medical ways. Staley also identified that Sarah had triggered strong maternal instincts in her and forced her to begin to confront her decision not to have children. Finally, Wells discussed Staley's response to Sarah's concern about the experimental nature of antiviral drugs and the history of exploitation of African Americans. Staley realized that her own cultural shame and bias coupled with her overwhelming desire to protect Sarah had led Staley to dismiss what was clearly an emotionally significant concern. Further, Staley had implied that Sarah should do what African Americans had done through much of their history in the United States: accept the dismissal of their concerns by White people who "knew better."
Over the course of the supervision, Staley confronted several options, including discontinuing HIV-related work and considering ways to be alert in the future to emotionally charged situations with clients. Staley chose to continue to work with people with HIV disease and to resume her own individual psychotherapy. The encounter with Sarah also opened Staley to the possibility that her parents' stories, which she had considered oppressive and limiting, had also helped them cope with hard choices. She resolved to rethink her self-imposed distance from her own culture. This case illustrates how unrecognized cultural biases and countertransference can impede the clinical work of an otherwise astute and self-examining clinician.
Stephan and Leonard: Choosing to Let Go
"Stephan Peretz, LCSW" is a 50-year-old, gay, White, seropositive social worker in private practice. He is on triple combination therapy but his viral load has never dropped below detectable levels. Nonetheless, his health is excellent and he has never had any HIV-related symptoms. In 1994, just before protease inhibitors became widely available, his partner of many years died of AIDS. "Leonard," a 54-year-old, seropositive, gay White man was referred to Peretz for psychotherapy by his doctor, because Leonard was depressed and was not adjusting well to the death of his lover, "Hank." Hank had died a few months earlier after failing to benefit from combination therapy. The physician saw Leonard's refusal to begin combination therapy as symptomatic of his depression, and referred Leonard to Peretz specifically because Peretz was open about being HIV-infected and was, like Leonard, a gay widower.
Leonard presented with very flat affect and multiple symptoms, diagnosable as either a complex depression or complicated grief. Leonard had been with his partner for more than 30 years, and his partner was the last person in his extended friendship group to die. To make matters worse, Leonard's cat died suddenly three days after his partner's death. When Peretz asked Leonard why he refused to begin combination therapy, Leonard said he no longer felt that he had any reason to live. As Peretz probed the extent of Leonard's depression, Leonard explained that he would never actively hurt himself, but he felt that by refusing to take any antiviral or prophylactic medication, he was acting in a way to hasten his own death; Leonard said he was fine with this approach.
In response, Peretz said that he had felt similarly in the weeks following the death of his own lover. But when Leonard asked him if at that point there were any people he loved, Peretz had to answer truthfully that he had been blessed with numerous friends and family who had been actively supportive. Leonard then told Peretz that he had no family or friends left alive. He had never been career-oriented; he had a relatively undemanding job that minimally interested him but paid well. Peretz asked, "If you are feeling so hopeless, helpless, and powerless, why have you contacted me?" Leonard's answer posed a tremendous professional challenge to Peretz.
"I was hoping to find someone with whom I could talk about all of this without his wanting to fix me. I know that I could try taking antidepressants in order to feel better, but to what end? I have had a wonderful life, filled with love, friendships, and lots of rich memories. I no longer have the energy or desire to do anything but to keep going for as long as I am alive. I am not suffering greatly; I am only lonely, tired, and sick, but I have no desire to try and meet new people to begin new relationships. After my cat died and I did not even consider getting a new animal, I realized that I was preparing for the end of my life. Are you willing to work with me on these terms?"
In recounting this session to his supervisor, "Sam Carter, LCSW," later that same week, Peretz reported telling Leonard that he wanted to think this over before reaching a final decision. Peretz told Carter that he felt confused about his ethical responsibilities. But Peretz came to believe that if Leonard were to try antidepressants -- an outcome that might result from therapy -- there might be the possibility that Leonard might feel better. If, however, Peretz refused to work with Leonard, there might not even be this one small chance for Leonard to change his mind. Peretz agreed to work with Leonard on Leonard's terms.
Peretz felt challenged not to impose his own values onto Leonard and to support Leonard's right to choose his own life's course. Peretz worked with Leonard for a little more that a year, during which time Leonard never chose to begin antidepressants or antiviral drugs, despite escalating pressure from his doctor, whom he eventually fired. At their final session in the hospital, shortly before Leonard died, Leonard thanked Peretz for having accompanied him on his journey. "I know that my choices were not the ones you felt would have been in my best interests. But I really respected and grew to value you for supporting me at all time and even going so far as to advocate with the hospital staff for my right to choose this way. You were my last and greatest friend and ally. I can never thank you enough."
As the science of HIV treatment continues to evolve, treatment decisions may become easier, even obvious. But for the foreseeable future, these decisions will require a laborious process of weighing risks and benefits. Mental health providers -- armed with an awareness of their own cultural and countertransferential biases -- are in a good position to facilitate this process.
*Between 1932 and 1972, government-funded researchers openly conducted the Tuskegee Syphilis Study in Alabama, during which 400 low-income African American men were told that they were being treated for syphilis, when in fact, researchers were observing the long-term effects of untreated syphilis to the end point, that is, death: at least 28 and perhaps more than 100 participants died.59 Others suffered mental illness and permanent disability, including palsy and paralysis, and were unable to work. All risked transmitting the disease to wives, lovers, and children.
Halkitis P. Sticking to it! Protease inhibitors and the challenges of adherence. The Volunteer. 1997; 14(5): 4-5, 18.
Gay Men's Health Crisis. Treatment Issues's second survey of physicians' treatment practice. Treatment Issues: Newsletter of Experimental AIDS Therapies. 1998; 12(1): 3-17.
Fischhoff B, Downs J. Decision-making theory and HIV disease. FOCUS: A Guide to AIDS Research and Counseling. 1997; 12(5): 1-4.
Dalton H. AIDS in blackface. In McKenzie N, ed. The AIDS Reader: Social, Political and Ethical Issues. New York: Meridian Publishing Inc., 1991.
Carballo-Dieguez A. Latinos. In Smith R, ed. The Encyclopedia of AIDS: A Social, Political, Cultural and Scientific Record of the HIV Epidemic. Chicago: Fitzroy Dearborn Publishers, 1998.
Carballo-Dieguez A, personal communication, December 1998.
Houston-Hamilton A, Day N. Prevention and culture: Working downhill to change HIV risk behavior. In Dilley JW, Marks R, eds. The UCSF AIDS Health Project Guide to Counseling: Perspectives on Psychotherapy, Prevention and Therapeutic Practice. San Francisco: Jossey-Bass Publishers, 1998.
Thomas SB, Quinn SC. The Tuskegee syphilis study, 1932 to 1972: Implications for HIV education and AIDS risk education in the black community. American Journal of Public Health. 1991; 81(11): 1498-1504.
Copyright © 2000 UCSF AIDS Health Project.
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