AIDS TREATMENT NEWS No. 111 - September 21, 1991
Michelle Roland

Many patients find themselves dissatisfied with one or more aspects of their relationships with their health care providers. For some, the problem is the amount of time and attention they receive during office appointments or in-patient hospital visits; for other, philosophical differences in treatment approaches leave them feeling misunderstood or unsupported in their decision-making process. Still others find their symptoms undiagnosed and/or untreated for long periods of time.

In this article, we will present some suggestions about how to develop a constructive working relationship between patients and their physicians. In order to do this, we will attempt to explain how doctors are trained to think and how you, as a patient, can assist them in their thought process while having your questions answered to your satisfaction.

What Kind of Patient Are You?

The first step in developing a good relationship with your doctor is to identify the role you wish to play in this relationship. The next step is to find a doctor who feels comfortable working with patients in this way. In order to find such a doctor, you must know what you are looking for.

Many people with HIV infection want to work as full partners with their doctors in managing their health. For such people, frank discussions of diagnostic and treatment possibilities are very important. Others would rather have the doctor do most of the thinking about what could be causing the symptoms and how to treat them without being included in this thought process. They would rather play a more passive role and accept the doctor's suggestions without a great deal of interaction.

This distinction is most often not quite as clear cut as it may sound. Many people fall somewhere in the middle, wanting to be included in the decision-making process, but not really wanting to know all of the details along the way. For these patients, brief explanations about what the doctor is looking for will suffice, followed with a more in-depth discussion of treatment options once a diagnosis has been made.

Determining which role you want to play does not mean that you need to be bound to that role irreversibly. There will be times when you want to know more or less than usual; the challenge will be in identifying those times and being able to communicate your needs to your doctor as they change. Most people, no matter how large a part they want to play in managing their health care, will at times find this role, and the information that comes with it, very scary and threatening. The emotional impact of such information should never be minimized, no matter how active you are in your health care.

Finding the Right Doctor for You

In addition to determining how active you want to be in your health care relationship, you need to decide the general philosophical approach you think you will want to take in terms of treatments. Some people feel most comfortable following the standard of care in the medical community. At this time, that would include such suggestions as starting AZT when your T-helper cell count has fallen below 500, and prophylaxis for pneumocystis pneumonia if the count falls below 200. Most often, the standard of care includes FDA approved drugs or treatments for which there is much data supporting safety and effectiveness.

Other people want to try new treatment approaches which have not yet been proven to be effective. Some recent examples of drugs which fall into this category include compound Q and oral alpha interferon. Some patients want to try new drugs in the context of a clinical trial; others prefer to use them with only their physicians' monitoring and advice. Finding a doctor who is already participating in clinical trials or who is willing to refer you to local trials will be important for patients who want to access potentially effective new treatments in this way. Finding a doctor who is willing to either provide you with largely untested compounds, or monitor you if you get them through another source, will be important if you want to try this approach. Not all doctors feel comfortable participating in the use of unproven drugs with their patients. It is a good idea to determine your doctor's willingness to monitor and support you in this area if you think you may want to try such a drug now or in the future.

Many people may want to add non-traditional (in the Western medical model) approaches like acupuncture, Chinese herbs, homeopathy, relaxation/visualization, vitamin therapy, etc., to their health care program. Finding a doctor who is supportive of your total health care approach is important in this case. If you want to use both unproven drugs and adjunctive therapies, you should find out how your doctor feels about each of these concepts.

Once you have determined the elements you are looking for in a doctor, you will have to talk about these issues with your current doctor or any new doctor you may be considering. You do have a right to have these conversations with your doctor. Realize, however, that your doctor may not be used to having this kind of discussion with his or her patients. Before launching into the details of the discussion, your doctor might be more open if you tell him or her that you want to talk about philosophy and style and arrange a time to have this discussion; this approach will allow the doctor to schedule the necessary time and prepare to switch gears from the purely medical issues with which she or he may be more comfortable to a frank discussion of partnership.

[Note that this article assumes that the patient has a high degree of privilege and accessibility to a variety of doctors from which to choose. The unfortunate reality is that in many of the public health and HMO systems, and in many geographical locations, the patient's ability to choose doctors is very limited. In such cases some of the later suggestions in this article may still be useful, although more difficult to implement.]

Time

There almost never seems to be enough time in any health care setting, whether private, clinic, HMO (Health Maintenance Organization), or public hospital, although some of these settings are certainly worse than others. This problem will probably never be solved, but it may be helpful to think about a few of the reasons that time always seems unnecessarily limited.

In some settings, for example, many HMOs, the doctor essentially has no control over the length of each appointment. You will often find yourself waiting for long periods of time, and feeling very frustrated. Keep in mind, however, that you are most likely waiting because the doctor spent more than the allotted time with other patients. The doctor in this situation is constantly battling conflicting needs: the need to stay on schedule so you don't have to wait too long and the need to spend "extra" time with patients who need medical or emotional attention.

A simple solution may seem to be to schedule fewer patients each day. While it is certainly true that some physicians have large practices for financial reasons, more often the physician is again confronted with conflicting needs: to take patients who need a doctor (good HIV doctors are in high demand), to see patients on short notice (how often do you feel frustrated by having to wait days or weeks for an appointment?), and to schedule sufficient time with each patient. In this difficult equation, appointment time is often the loser.

In spite of this pessimistic assessment of time, some physicians and offices are better than others about staying on schedule and spending sufficient time with each patient for the patient to feel that his or her needs are being met. When possible, talking to other patients who see a particular doctor is probably the best way to determine how much of a problem scheduling will be.

A final comment on time: Often, a fair amount of time is spent thinking about each patient when the patient is not there. A responsible doctor reviews the chart before going in to see the patient, to refresh his or her memory about that patient's history, and then spends some time thinking about what the symptoms mean and how to approach them when they write the chart note after the patient leaves. This fact may not make you feel any better cared for when the doctor seems to be rushed and not giving you the attention you want and need, but it's good to keep it in mind when you are assessing the care you are receiving. Is the care good, even if you don't feel like you are getting enough time? If so, the doctor is probably doing a good job "behind your back." If not, you may need to talk to your doctor about the time issue and other reasons you may not be getting the care you need.

How Do Doctors Think?

Doctors are trained to think in four main steps. Understanding this thought process can help you learn how to ask questions in a way that will help your doctor think better and provide you with answers to your questions.

First, the doctor takes a history, or asks questions about your current complaint and pertinent aspects of your past medical history. At this time, the doctor tends not to examine you, but rather just to talk. This may seem a little awkward, as you may want to show the doctor what it is you are describing. He or she will probably ask you to show where your discomfort is, but will not focus on the physical exam until after asking you as many questions as he or she can think of.

This may be an area where people feel cut short or ignored. The doctor is again working with conflicting needs: the need to listen to you and let you talk and the need to keep on schedule. You can help by trying to answer the doctor's questions completely but to the point, and the doctor can help by being attentive to you. Doctors are told all throughout their training that the majority of information they need to make a diagnosis will come from the history, so they should listen well.

You can also help in this area by reminding the doctor of important facts of which they may have lost track, like weight loss over an extended period of time, recent and past medication changes, adverse reactions to medications, visits to other doctors, recent lab tests or x-rays that have been ordered, etc.

Next, the doctor does a physical exam based on the information from the history. Again, this may seem awkward, because the doctor's thought process has shifted; he or she may not want to talk much while examining you. Some doctors will be able to put you more at ease during the physical by keeping up the conversation. Others may concentrate intently on the exam.

Once the doctor has collected the data from the history and physical, he or she makes an assessment, which should take the form of a differential diagnosis. This is the stage where he or she considers all the possible causes for your symptoms and physical signs found during the physical exam.

Finally, the doctor decides on a plan to determine which of the possible diagnoses is the correct one and how you should be treated.

You can play a crucial role in the last two stages: trying to figure out what is causing the problem and deciding how to treat the problem. This is the thinking that the doctor usually does in his or her own head, or while writing in your chart. If you want to be involved in the process, these are the kinds of questions you can ask: What are the possible diagnoses you are considering to explain my symptoms and physical findings? What makes you consider each of these possibilities? Is there anything else we should be considering? How will we figure out which of these possible diagnoses is the correct one? What tests should we run? How invasive is each test? How expensive? How accurate? Are there some tests we should run more than once (stool samples for ova and parasites, for example)? What are the risks and benefits of each test? In what order should we do these tests? What treatments should I consider at each stage -- before we have a diagnosis, and after we have it figured out?

The most important thing you can do to help your doctor think through the problem and to help you feel assured that you are getting the best possible care is to map out a plan with the doctor. What will you do first? If you cannot make a diagnosis after doing that, then what will you do? Then what? Then what? You can go through the same process with treatment possibilities once a diagnosis has been made. What are my treatment options? If I try this and it doesn't work, or the side effects are too bad, then what could I try? Then what? Are there any other medications I can take with the treatment that might make the side effects more tolerable? What side effects should I expect?

Following Up

Chances are that you will still have questions when you leave the doctor's office or later as you think about all the information you have received. Write your questions and concerns down and bring them with you to your next appointment.

Working with an assertive patient can be threatening to even the most enlightened doctor. To soften the "threat," try to validate your doctor and to take his or her needs into consideration. Find something you like about what the doctor is doing before you jump into all your questions and concerns. Tell him or her that you'd like to talk about several issues and that you are aware there may not be time to cover all of them during this appointment. Ask how much time you do have, and if you can schedule another appointment soon to discuss the issues which are not highest priority. Make sure you know what your priorities are so you can have as many of your needs met as possible during each appointment.

Finally, ask yourself what questions you always seem to have after an appointment. What consistently frustrates you? Try to take those questions and frustrations and figure out how to talk to your doctor about them so that you can decide together how best to take care of all the parts of you.

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