Here is a quiz all patients need to be able to answer correctly: Which of the following characteristics best predicts how healthy you are? (A) Your race or ethnicity, (B) your income, (C) your ability to understand medical information, or (D) your education level. To many people's surprise, the answer is C'that is, according to www.askme3.org, a Web site designed to help patients make better sense of their own health.
For many people, the most important source of health education is their HIV specialist. But if you find yourself confused by what your doctor has to say, you are not alone. Investigators at the Center for AIDS Intervention Research at the Medical College of Wisconsin speculate that one in four HIVers have significant trouble understanding information about their own health. Further, Mark Pettus, MD, author of The Savvy Patient: The Ultimate Advocate for Quality Health Care, says about half of all American patients leave their doctor's office without a firm understanding of the medical issues discussed during the appointment.
This difficulty comprehending the ins and outs of HIV is a serious problem for people infected with the virus. If you do not have a good grasp of how to manage the HIV, you are likely to have lower CD4-cell counts, higher viral loads, more hospitalizations, and worse overall health.
Be Your Own Advocate
To start, we have to face up to an important reality: Medical school is not charm school. Doctors can be intimidating, and they are not always the best communicators. In short, their bedside manner often has room for improvement. Plus they are usually in a rush. At best, your appointment is probably going to last 15 to 20 minutes. And according to www.askme3.org, the average physician allows patients to speak for only 22 seconds at the beginning of the appointment before the doctor starts to talk.
All of these variables are ingredients for a puzzled patient. Unfortunately, many patients are too embarrassed to admit they are confused. Also, they do not organize their thoughts ahead of time in order to make sure they ask the right questions.
The number 1 rule to remember is that you need to fight for yourself. Do not expect your doctor to pause to see if you are confused about what he is talking about. To ensure that you know and understand what is going on with your body and your health care, HIV Plus has come up with several tips on how to get the most out of your doctor visits and access other resources that can educate you about how to cope with HIV.
' Have your questions thought out and written down. Saundra Johnson, coordinator of treatment education at New York City's Gay Men's Health Crisis, advises patients to keep a running diary of health concerns that arise between appointments. Refer to this diary when you write out a list of questions for your doctor. Put the questions in order of priority. Save those at the bottom of the list to ask people other than the doctor.
In addition, www.askme3.org organizers advise patients to ask these basic questions of their physician:
(1) What is my main problem?
(2) What do I need to do?
(3) Why is it important for me to do this?
' Take along a list of all your meds and supplements. John, a Los Angeles resident, keeps all the information about his 14 medications, seven supplements, and his most important blood work numbers typed up in a file on his computer. He also keeps information on the drugs' dosages and about how often he takes each medication. Other HIVers take the receipts that come with each prescription'some pharmacies also provide removable adhesive labels with medication information'and stick them on a single piece of paper in order to keep a record of what they are taking.
' Carry a pad of paper and pen with you and take notes during your appointment with your doctor.
' Develop a partnership with your physician. The two of you should be a team in the fight against HIV. Tell your doctor if you are confused and ask him or her to repeat or rephrase things you do not understand. Summarize in your own words what your doctor has said and ask if it seems like you have it right. At the end of your appointment, ask for a review of all the key points.
' If your doctor is not communicating with you well, say so. You might even write a letter outlining your concerns. If all else fails, consider a new physician.
' Take along a friend, partner, or family member. He or she can help keep track of the doctor's instructions for you. You may even want to role-play with this person before the appointment in order to practice how you will speak to your doctor.
' Ask for more resources. Knowledge is power! Your doctor may have things for you to read that will help you better understand certain issues. Tell him or her if you need materials written in simple language.
' Ask for copies of your medical records. Review your lab reports with people other than your doctor who can help figure out what all the numbers mean.
' Talk with other health professionals. The nurse or physician's assistant in your doctor's office can answer many specific health questions'for example, about when and how to take your medication. Ask if there is a social worker available to help you as well.
' Get a second opinion. Do not worry about hurting your doctor's feelings if you feel the need to visit another physician for more information. Above all else, remember that your goal is not to keep your doctor happy but to keep yourself healthy.
' Be ready to look for help outside of your doctor's office. This is especially important if you do not have one physician that you see regularly! Most urban areas have at least one AIDS service organization where you can speak to a treatment educator about your health concerns. For a list of AIDS service organizations in your area visit www.asofinder.com or look in the yellow pages. These organizations often have health education workshops on topics such as HIV basics or understanding lab reports.