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Personal Perspective

Person First/Patient Second

Winter 2004/2005

As the Director of Clinical Care of the William F. Ryan Community Health Center, I provide medical care to people living with HIV as part of a multi-disciplinary treatment team. The Ryan Center is a not-for-profit community health center that provides primary and preventive care, including integrated HIV clinical and support services to underserved, minority communities in northern Manhattan. As part of my duties at the Center, I spend a lot of my time administering quality assurance projects, but I also have the pleasure of providing an orientation to medical services for each new HIV-infected patient. I have found the approaches discussed below to be helpful in establishing good working relationships with my patients.

Every patient I treat is an individual. I try to remember that your previous experiences with the medical profession may have been minimal to non-existent. When you come through the Center's doors, you arrive with a unique set of experiences with health care (the good and the bad): varying degrees of knowledge about HIV infection and the treatments you may already be taking, and your own approach to dealing (or, sometimes, not dealing) with your health issues.

HIV is unlike any other disease treated today. Social stigma against people living with HIV still exists in many communities, and many patients have almost no knowledge of treatment advances. This includes both the "good" advances (highly effective therapies that have moved HIV infection into a chronic care model) and the "not so good" advances (daily pill taking, regular blood draws and medical visits, side effects, etc.).

Your First Visit

Your first visit with any medical practitioner is critical. It is at this visit that a patient obtains the sense of where he/she fits into the care process. The practitioner may give the impression that you are just a "number" or he/she will make you feel like an individual with unique issues that need to be addressed. At my center, every new patient attends an orientation to medical services. It does not take place in an examination room but in my office. In this non-clinical setting, we can sit and talk face-to-face. If you are newly infected, I immediately find out how you are coping and offer emotional support and a mental health referral, if needed. The focus of the orientation goes beyond simply obtaining an initial medical history and ordering your first blood tests. You are provided with a framework for your future medical care.

It is important to remember that you, as the patient, are the leader of your individualized healthcare team that includes the medical practitioner, nurse, case manager, and other support staff. The staff assesses your medical and psychosocial status and, based upon their knowledge and experience, makes recommendations for treatment. However, you always make the final decision on any treatment course. This is especially important if you feel that HIV has taken control of your life -- understand that you are still in charge.

Also, during this visit, I explain the basic blood tests that we will monitor together and encourage questions. At our clinic, every patient receives a packet of information, including brochures on the Center's services and information on HIV infection, blood testing, and others. ACRIA has some excellent patient information booklets we use that provide simple but complete information on HIV care issues -- visit their website or call them.

We all have trouble remembering every question we want to ask our healthcare practitioner, so I encourage patients to go through the information in the packet at their leisure and to write down their questions so that they can ask them at their first clinical visit. If you cannot bring materials home because your family or housemates may not yet know of your diagnosis, I suggest reading the materials while you are in the clinic. Most clinics have HIV information booklets and magazines available in the patient waiting areas (POZ, HIV Plus, etc.) for everyone to read. For those patients that have literacy issues, I refer them to support groups and/or individual sessions with support staff.

At our clinic, patients are also given a Pocket Health Journal. This combination datebook and treatment guide provides more information on care issues as well as a place to keep a medication list and to track T-cell and viral load measurements. Tracking of T-cells and viral load is an excellent way for you to keep an active role in your medical treatment.

The Unengaged Patient

Many patients do not take an active role in their medical care. While this can be due to many factors (lack of comfort in a medical setting, language/cultural barriers, literacy issues, etc.), I try to engage the patient, even briefly, during each visit to discuss their care. To help start a dialogue with you, your medical practitioner may ask you open-ended questions to encourage discussion, instead of questions that can be answered with a "Yes" or "No." For example,
  • Instead of asking: "Are you having any problems with your new medication regimen?"

    I would ask: "What side effects have you noticed since taking your new medication?"

  • Instead of asking: "Do you have any questions about your blood work?"

    I would say: "Tell me what you think about your current T-cell level."

I want to hear what you think about your treatment plan and your quality of life. Also, I never underestimate the value of other care team members in providing you with information. Visits to nurses, case managers, and social workers are all part of the care process where you can get information. Some staff might have a closer relationship with you or perhaps can speak your language more fluently, and they can help you get more informed.

Finally, our responsibility as medical practitioners is to encourage open communication with you and to have a genuine interest and regard for your well-being. It is important for you to know that you are more than the "sum of your laboratory values and physical assessment." Demonstrating that I care for my patients as individuals goes a long way toward making every visit an educational opportunity.

Too Many Issues/Too Little Time

If you have many questions, sometimes it may be impossible to adequately answer all of them during one visit. When this happens, I try to focus on your one or two major questions and then, if necessary, schedule another time to come back to continue our discussion. These follow-up visits are during the hours I set aside for medical education appointments each week. They take place in my office and focus solely on answering your questions regarding your care. I have found that this consultative approach also helps to foster the spirit of collaboration as a team.

Remember, ask questions and continue to educate yourself about HIV. You are in control.

In addition to his work at the Ryan Center, Paul Stabile, P.A.-C. is a member of the New York State Department of Health, HIV Quality of Care Advisory Committee and a former member of the New York City HIV Health & Human Services Planning Council (Ryan White Title I).

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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.
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