HIV Treatment Education in 2002
Last night a particular client crept into my mind. Her doctor had just prescribed her first combination therapy and recommended that she talk to me before actually starting the regimen. We talked for about two hours, covering everything from dosing schedules and food restrictions to potential side effects and -- in my opinion, she wanted to know -- how long this regimen would work before she would have to change medications. But our conversation started with her question, "Why do I have to take these medications?" Her doctor had not taken the time to explain the Whens and Hows to her, so it should have come as no surprise that he did not explain the Whys either.
This morning when I got into the office, the phone rang and I had a call from a former client. He abruptly began, "You probably don't remember me, but I talked to you about a year ago after a presentation you did." I vaguely remembered the conversation, but I really did not remember him. I could not put a face to the name or recall the particulars of our conversation except his complaints about how his doctor did not take his side effects as seriously as he thought he should. According to him, however, I did take them seriously and spent quite a bit of time talking with him about how to manage the side effects he was experiencing. He informed me that all of my side effect management tips had worked and that he was doing great. Without the side effects, he was now perfectly adherent to his medications and, as a result, his labs were the best they had ever been.
As I reflected on these two very different individuals with very different treatment education needs, one common thread connected them: they both received inadequate treatment information from their physicians. The woman's doctor did not spend the necessary time with her to prepare her for taking HIV medications. Being emotionally ready to take medications -- in this case, having all of her questions answered and understanding the impact of starting medications -- is crucial to successful compliance. The man's doctor did not really listen to his concerns or take him seriously, an all-too-familiar criticism of physicians. Side effects are real, and quality of life and lifestyle issues must be addressed as clinically significant.
The revelation that some physicians provide insufficient treatment information is not new. Were physicians always capable of providing comprehensive treatment information, community-based treatment educators would not be necessary. This is not, however, a blanket indictment against physicians. There are three reasons why doctors cannot fully educate their patients and, as a result, properly serve as treatment educators.
First, many physicians do not have -- or possibly make -- the time to fully inform their patients about treatment issues. Large numbers of patients and increasing pressure by healthcare administrators to see patients as expediently as possible make it difficult, if not impossible, to give each patient the time and attention she or he deserves. Treatment educators, on the other hand, make the time to inform clients and answer their questions. At AIDS Treatment Initiatives, for example, it is not uncommon to spend two to three hours with a client who is either newly diagnosed or has multiple treatment issues that need to be addressed.
Second, some physicians are incapable of explaining treatment issues in language that patients are able to understand. Treatment educators, however, strive to discover the most effective ways to explain treatment issues in consumer-friendly terms. Using illustrations, analogies, examples, and other devices, treatment educators "translate" complex medical data into easily understood information.
Third, physicians approach health from a philosophy of "treat the symptom." Specialization training (infectious disease, oncology, etc.) creates insular expertise in a particular field, often at the expense of a broader, more comprehensive approach to care. Physicians are not trained or educated, for example, in nutrition, exercise, or integrative therapies and, as a result, either do not lend credibility to these disciplines or are not willing to make recommendations or referrals for such complementary care. Treatment educators are usually more open to integrative approaches to healthcare. They are often better versed in offering balanced information about complementary therapies or more amenable to providing referrals to dietitians, fitness trainers, or acupuncturists.
In general, treatment educators approach education opportunities -- either one-on-one counseling sessions or group educational programs -- from a wider, more diverse standpoint. This outlook allows the treatment educator not only to propose a wider range of treatment options but also to view the client's health status from a more holistic perspective. Treatment educators are good at looking beyond the symptom itself to addressing the cause of the problem. This involves an understanding of the client's medical history as well as getting to know some of the client's personal history and understanding the psychosocial dynamics involved in her or his treatment issues.
When the first client popped into my thoughts, I wondered how she was doing. Was she taking her medications? Had she moved back to Chicago to live with her sister like she wanted to do? Was her eleven-year-old son living with her again? For her, these family dynamics would play a role in her adherence and were factors that would need to be addressed. For the thankful client on the phone, essential side effect management was all that had been required. Both situations had their unique complexities, but the ability to give each client the time, attention, and fundamental respect she or he deserved allowed me as a treatment educator to meet their particular needs.
Guy Pujol is Executive Director, AIDS Treatment Initiatives, Atlanta, Georgia.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.