Published in the Bulletin of Experimental Treatments for AIDS April 1998 issue, by the San Francisco AIDS Foundation.

April 1998 Table of Contents

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You and Your Doctor: Ideas on Managing One of the Most Important Relationships in Your Life

Bruce Mirken

The AIDS epidemic has taught doctors and patients new, more cooperative ways of interacting with each other. The old, patriarchal model -- in which the patient was little more than the passive recipient of the physician's wisdom -- is changing, pushed by the very nature of HIV/AIDS medicine with its constantly changing information and substantial uncertainties. Open communication, cooperation and active involvement by people with HIV in their care not only makes the doctor-patient relationship more enjoyable, but some research suggests it may actually contribute to survival. At the same time, financial and time constraints imposed by managed care are adding new difficulties. Learning to make the best use of your interaction with your doctor is a crucial part of any strategy for coping with HIV disease.

The Changing Paradigm

In a 1991 study of long-term AIDS survivors (defined as individuals who had lived at least twice as long as the median survival period after being diagnosed with AIDS), researchers Lew Katoff, MD, Judith Rabkin, MD, and Robert Remien, PhD, made this observation: "While AIDS patients and their physicians recognize that many factors contribute to long-term survival, they single out a strong relationship between patient and physician. Patients repeatedly mention that being treated as an equal by their physician is essential. This means that both patient and physician are jointly involved in healthcare decisions.

"These patients take responsibility for their own health. They are, overall, superb medical consumers. They are not reluctant to change doctors when they are dissatisfied..." This description stands in stark contrast to the traditional view of the patient's role. As described by one author in the early 1950s, a patient's obligations were: 1) to be motivated to get well, 2) to seek technically competent help and 3) to trust the physician. Taking charge of one's care was simply not in the picture. "I think HIV patients have broken the mold," observes San Francisco HIV specialist Jon Kaiser, MD. "They have pushed the envelope on patient participation in care way beyond whatever existed before the epidemic."

Indeed, all one has to do is look at the current sets of guidelines for HIV treatment issued by the U.S. Department of Health and Human Services and by the International AIDS Society-USA to see why it is so important for people with HIV to be actively involved in treatment decisions. These guidelines do not give physicians a cookbook-style recipe for what drugs to use and when to use them. Instead, they outline a complex series of choices and alternatives, explicitly acknowledging that there is no clear "best" approach for all patients, and that individual needs and preferences must be taken into account. The days when a patient was expected to simply "trust the doctor" and passively follow instructions are over.

Picking a Doctor

Before you can start making treatment decisions, of course, you must have a primary care physician, and finding the right doctor is crucial. Unfortunately, a variety of financial and practical considerations, from the vagaries of insurance plans to physical distance, may limit your choice of providers. Still, most people have at least some choice in who their primary care doctor will be, and exercising that choice can make a huge difference in quality of care. Many patients, it should be noted, are routinely treated by physician's assistants or nurse practitioners working under the supervision of a MD. Though the role of such providers is a matter of enough debate that an entire article could be devoted to the subject, much of the discussion that follows applies to your relationship with any primary care provider.

"If I'd done as I was told, I'd be dead today," writes long-term AIDS survivor Robert Rimer in his book, HIV+: Working the System. Rimer and co-author Michael Connolly make a convincing case that Rimer's survival -- he is still alive and well 12 years after his AIDS diagnosis -- is due in substantial part to his active involvement in his care and his willingness to change doctors when confronted by physicians with little HIV experience and little willingness to look beyond the conventional medical wisdom of the day.

"Doctors are just like other professionals," Rimer and Connolly write. "Most are adequate, but some are very good and some are very bad. You must evaluate them individually and determine if they fit your needs." Rimer, like many others, advocates taking the time to actually interview prospective physicians, bringing in a prepared list of questions you want them to answer. The downside of this approach is that you will probably be charged for an office visit, since the financial pressures on physicians these days are such that few can afford to give away half an hour of office time. But the investment in time and money is likely to be worthwhile.

When evaluating physicians, here are some factors to consider:

Experience with HIV Disease

Regardless of the physician's area of specialty, "you want somebody who has a lot of experience caring for people with AIDS," comments Meg Newman, MD, of San Francisco General Hospital. "There's very good literature suggesting that no matter what your credentials are, you need to actually take care of people with AIDS...Physicians who take care of very few AIDS patients definitely have worse outcomes."

Indeed, a study of HMO patients in Washington state conducted from 1984 to 1994 showed a clear relationship between physician experience with HIV and their patients' survival. Those seen by the most HIV-experienced physicians lived a full year longer, on average, than those treated by the physicians with the least HIV experience. Some strongly advocate seeking a physician who is board certified, meaning he has passed an examination given by a medical specialty board.

Keeping Current

The peer-reviewed medical literature often publishes new information a year or more after it first becomes available at meetings or other venues. Does your doctor read treatment newsletters like BETA and AIDS Treatment News that publish the latest information? Does she attend conferences and seminars? While the formal medical literature is tremendously important -- particularly as a means of verifying that preliminary findings first presented at conferences have held up under further scrutiny -- keeping up with the latest developments is essential in this fast-changing field.

Openness to and Experience with Your Particular Circumstances

It can be important to choose a doctor who is open to and experienced with your particular circumstances. If you are a gay man, for example, the last thing you want is a homophobic doctor. If you are or have been a user of illicit drugs, you don't want a physician who regards all drug users as "irresponsible junkies" and who has no understanding of the recovery process. Rimer -- whose personality practically defines the word "chutzpah" -- suggests taking an aggressive approach to these sometimes touchy issues, asking potential doctors if they think, for example, that homosexuality is "treatable." You don't necessarily have to be that aggressive, but you do need to know that your doctor isn't basing decisions on prejudices or stereotypes.

Women with HIV face a particular dilemma, notes Rebecca Denison, who founded Women Organized to Respond to Life-threatening Diseases (WORLD) in part because of the frustrations she experienced as an HIV-infected woman. "For most women, going to an AIDS specialist means firing your doctor," Denison explains. "A lot of time women would rather go to the gynecologist that they have always seen, or the family doctor that sees them and their partner and their kids. It just feels safer." But often those doctors have little experience with HIV.

On the other hand, she continues, many AIDS specialists have little experience treating women with HIV and may not recognize HIV-related gynecological symptoms. "A lot of HIV specialists don't really go there, don't do Pap smears and stuff," Denison says. "They'll just refer you to a gynecologist. But most gynecologists don't have a specialization in HIV." Denison suggests checking with other HIV-infected women as well as AIDS organizations such as WORLD that might be able to recommend physicians with experience treating HIV positive women. She adds, "That's how I found my doctor."

Communication

Given the complexities of HIV care, it is essential to have a doctor who will take the time to explain tests and treatments, and who has the ability to make things clear in non-technical language. You also want someone who will answer your questions and won't be put off if you express doubts or ask for further explanations. "Search for someone you can really be honest with," Denison advises. "Because taking medication these days is so difficult and taking them right is so important, you're going to be in big trouble if you can't have an honest conversation with your doctor about what you are and are not willing and able to do."

Organization and Accessibility

If an urgent situation comes up, can you be seen on the same day? Within 24 hours? Are telephone calls returned? In general, do the physician's office and support staff seem organized and efficient?

Willingness to Fight on Your Behalf

If your HMO wants to limit office visits to 15 minutes but your problem takes half an hour to evaluate, will your doctor insist on taking the time that's needed? If your insurer does not want to pay for the drug that can best treat your condition, will your doctor fight his way through the process of appealing the decision in order to get what you need? These kinds of issues arise all too often, and many physicians have developed strategies for handling them. One way to approach this is to ask your prospective doctor what sort of problems she has had with HMOs or insurers and how she dealt with them.

A Good "Fit"

A good doctor-patient "fit" involves not only attitudes towards treatment decisions, but styles of personal interaction as well. Some people are most comfortable with a warm, personal style of relating, while such an approach makes others uncomfortable. If your physician's way of dealing with you feels intimidating or makes you uneasy, it will be hard to communicate openly and honestly.

You also want a physician who is comfortable with your attitudes about treatment. If you are interested in exploring alternative and complementary therapies, for example, you need a doctor who is open-minded enough to work with you in integrating those approaches into your care and in considering which ones might be worth trying. If your inclination is to "hit early and hard" with aggressive treatments and to consider using new or experimental drugs, you're bound to clash with a physician whose approach is cautious and conservative. There is nothing wrong with having a disagreement with your doctor now and then, but the channels of communication need to be open enough that you can work through them and arrive at a treatment plan with which you both feel comfortable.

Knowledge and skill are crucial, but even a thoroughly qualified physician may not be the right one for you. To the degree that a choice of providers is available to you, use it.

Being an Effective Patient

The cliche' "knowledge is power" has never been truer than in HIV care. Your knowledge can supplement your physician's store of information in significant ways and help you to get better care.

One writer has observed that the best medical care "is based on the partnership between 2 experts: a patient uniquely knowledgeable about his own past and present experiences and a physician who understands disease and, with his patient, respectfully attempts to comprehend and treat both the patient and his specific illness." No one knows your body better than you do; you live in it every day, while your doctor sees it for perhaps half an hour once a month.

Your knowledge of your body and what it is doing and feeling is extremely important in itself, but that knowledge can be better put to use if you know enough about HIV disease and its treatment to put that information into context. Indeed, the one universal piece of advice from doctors, people with AIDS and AIDS activists alike is, "educate yourself." This may seem scary to those without a medical background, but it needn't be. Newsletters, hotlines and other sources offer plenty of basic HIV information for beginners.

Armed with that information, you can ask meaningful questions and better evaluate the choices available. And physicians -- especially those who treat many people with HIV -- are becoming increasingly comfortable with answering questions, explaining their thinking and even working through disagreements. Patients' increasing willingness to question and challenge physicians and seek out their own information "is really a good thing," observes Virginia Cafaro, MD, whose patients include a number of San Francisco's most outspoken treatment activists. "The old, paternalistic model... didn't serve the patient well. You need to have a working relationship where the patient feels comfortable enough to be able to ask questions and tell honestly what's been going on with them."

"Doctors are human and they can't be right all the time," Denison says. "My doctor walks on water, but that doesn't mean she's right all the time. And I don't expect her to be."

Physicians like Cafaro are becoming increasingly comfortable with patients bringing them information about drugs, treatment strategies or clinical trials, something that "old school" physicians used to -- and sometimes still do -- find insulting. "I definitely depend on my patients to bring in information," Cafaro says, acknowledging that new HIV/AIDS developments come out so rapidly that it is nearly impossible for one person to keep up with them all. Every physician we spoke to for this article voiced similar thoughts.

Longtime AIDS activist Matthew Sharp agrees. "It's so important to have that knowledge," he says, ticking off a list of times when he walked into his doctor's office with information the physician hadn't seen yet. "If you don't think you can do it, remember it's your survival." In Sharp's experience it is fairly common for physicians to have gaps in their knowledge, especially about the immune system -- perhaps not surprising, given the rapid pace of research in the field. Of perhaps more urgent concern to most people with AIDS, he says, "I find that doctors don't know a lot about treatment access, surprisingly enough. They tend, especially in private practice, not to know about access mechanisms for some of these drugs."

That, he thinks, may be a symptom of the time and cost pressures imposed by managed care. Learning about expanded access programs for new drugs and the various government and private programs for those unable to afford approved treatments can be time-consuming and sometimes frustrating, but the information is out there and usually not too difficult to comprehend. This is one area where being an empowered, aggressive patient can really make a difference.

Some Practical Hints

But being an aggressive, inquisitive advocate on your own behalf does not mean being rude or hostile. Because we usually encounter them in sterile, clinical surroundings, it's easy to forget that doctors have human feelings and frailties. Respecting those feelings will make the interaction easier.

"If I was rewriting the book today it would be much more about being nice first," Rimer says. Even when problems or disagreements arise, they can often be resolved if the issues are aired in a context of mutual respect.

That doesn't mean ignoring differences. "I like a patient who will fight with me and let me fight with them," comments Mary Romeyn, MD, author of Nutrition and HIV: A New Model for Treatment. "I really favor being able to each have strong opinions and bring them together, and out of that can emerge a care plan which is really based on knowledge." Many physicians can handle intense disagreements as long as they don't descend into personal hostility.

One thing physicians universally appreciate is a patient who makes effective use of the time available in an office visit. "For me the ideal patient is one who comes in really well prepared, so that my time with them is well spent," Romeyn says. That may mean taking a little time in advance to organize yourself. Many patients find it useful to make a list of items to discuss or questions they need answered. If those questions pertain to an article you've read or an item in a treatment newsletter, by all means bring it with you. It's also useful to keep a list of all medications you are taking -- including herbal remedies, vitamins and nutritional supplements -- and bring that along as well. Some prefer to bring the actual pill bottles rather than a list so that there is no possibility for misunderstanding.

If you are a new patient and this is your first appointment, it is particularly important that your physician become up-to-date on your past history, so it may be useful to jot down some notes. If you can avoid wasting time on relatively simple things, it will be easier for your doctor to take the time needed to discuss treatment strategies, evaluate complex problems or fill out that burdensome expanded access paperwork.

Again, knowledge of your illness and its treatment can help you prioritize so that the most important issues get the most time during your visit. "I hate it when almost as they're leaving they say, 'Oh, by the way, I had a fever of 110 last week. Do you think that's significant?' " one doctor observes.

Being well informed will also make it easier to work through disagreements. Rimer writes, "You must do your homework before discussing treatment decisions with your practitioner. Only then can you compare information and reasoning when the doctor recommends a treatment you feel uncomfortable about. If you have no information of your own, the discussion can grind to a halt -- or become adversarial. You're not making good use of your practitioner's time or your own."

But sometimes the relationship just doesn't work. Maybe it's a hopeless clash of personalities and styles, maybe it's that your doctor is just too hard to reach when you need him, or maybe she doesn't have the necessary knowledge of HIV treatments. There is no hard and fast rule about when to fire your doctor, but sometimes a change is essential. If your gut is telling you it's time to switch, it's at least time to give the matter serious thought.

Again, keeping up with treatment information can help you know when you need a new physician. Rebecca Denison recalls, "I met a woman at a retreat a couple months ago who was pregnant, and her doctor had her on AZT and d4T" -- months after data had been released showing that the 2 drugs interfere with each other and an alert had gone out telling physicians that they should not be used together. A doctor who couldn't be trusted to keep up with such vital information, "wasn't qualified to manage her HIV, baby or no baby," Denison says.

In her book, Romeyn offers 2 pieces of advice for switching doctors: 1) If you possibly can, do it when you are feeling well, not when you are sick. "Don't wait for a crisis to make the change." 2) Find a new doctor before you say goodbye to your old one. It is natural for the physician to feel hurt or disappointed at some level when a patient decides to leave, and having to make a return visit to a doctor you've fired may be uncomfortable for both of you.

Denison offers one final piece of advice: when you find a physician with whom you feel comfortable, whose knowledge and style of dealing with patients really works for you, show your appreciation. She says, "When you find somebody who's really good, let them know. Thank them. Tell them specifically what they've done that is helpful to you, because if you don't tell them, how do they know? If your doctor is the only person who knows you have HIV who ever touches you, and it feels good to know that they'll touch you, let them know. They work day in and day out in this hellish war, and we have to support them. Because I don't want the good ones to burn out."

Bruce Mirken is a freelance writer based in San Francisco.

References

Page last updated 5 May 1998