Managing Your Doctor

Introduction

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.