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Go to the Building a Cooperative Relationship Menu Introduction
A positive antibody test, like a diagnosis of AIDS or ARC, sets
off many changes in a person's life. Few aspects shift more profoundly
than the doctor / patient relationship. Many people develop a more
assertive attitude about what is happening and what to do about
it. This shift in attitude can make for a bumpy ride unless both
patient and physician learn to work together. Typically, both are
striving to learn what works from a variety of available but
imperfect treatments. Just as there is no single intervention which
is universally acclaimed by patients, there exists no single approach
among doctors which might be called the "accepted" medical position.
Three factors demand new consideration of the doctor / patient
relationship. First, this late in the epidemic, growing numbers of
people are no longer willing to "wait and see" and instead insist
upon an aggressive treatment strategy, even if it means self
treatment. Secondly, there is an acknowledged uncertainty among
many physicians about how to respond to requests for monitoring
and/or assistance in using medicines not licensed yet by the FDA.
While perhaps only a minority are unwaveringly opposed to such
medications, few will recommend or initiate such approaches. Even
those who are sympathetic search for the right way to deal with
this complex issue. Third and finally, many people with HIV find
taking a more active role in their medical strategies a fundamental
part of their personal empowerment. This might come, however, at
the expense of a change in the traditional power dynamics of the
doctor-patient relationship.
PI suggests the following guidelines for discussion. Our intention
is to help both parties establish reasonable expectations of each
other and set up a climate of cooperation and joint responsibility
for healing. They should be viewed as a starting point in a
challenging situation, not as hard positions or demands.
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Go to the Building a Cooperative Relationship Menu For The Patient:
When unapproved treatments are discussed, some aspects of the usual
patient/physician role may be reversed. Patients often have to take
the more active role in reviewing and selecting treatments. The
use of unapproved medicines needs to be discussed, avoiding
confrontive approaches. This calls for a well-planned visit in
which adequate time for conversation is allowed. It makes no sense
to just demand a treatment, no questions asked, in a brief visit.
Only discord and frustration can result.
When the time and place are right, the patient should discuss what's
known about a treatment and why he or she has decided to use it,
all the while welcoming the physician's input. When requesting
prescriptions for existing approved medications, a friendly and
firm request is likely to work best. If the doctor is opposed, the
patient is entitled to know why, in clear terms. The doctor's
concerns and knowledge are due respect, whether or not you agree
with them. Remember, both parties may be new at this kind of
dialogue.
Some doctors have worked through their concerns with these issues
and actively support patients' who use unapproved treatments
wisely. Their courage has taken them a long way from the traditional
medical model and risks possible criticism from other doctors.
These doctors are exceptional people and deserve to hear our
appreciation expressed.
Whether or not agreement is reached on the use a treatment,
cooperation in the form of proper monitoring through examinations
and lab tests should be secured. The patient, in turn, should agree
to heed to reasonable warnings suggested by the monitoring process.
Just as there are things patients can do to make the relationship more cooperative, there are things the doctor can do as well. While patients are in no position to tell doctors how to run their practices, they are in fact their clients, and for that precious 15 minutes together, the doctor works for the patient. The following suggestions are intended to help doctors deal with patients whose expectations may have been changed by the epidemic or personal education about treatments. Despite the dedication most physicians feel in the epidemic, nothing has fully prepared either doctor or patient for the crisis we now face together.
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Just as there are things patients can do to make the relationship
more cooperative, there are things the doctor can do as well. While
patients are in no position to tell doctors how to run their
practices, they are in fact clients, and for that precious 15
minutes together, the doctor works for the patient. The following
suggestions are intended to help doctors deal with patients whose
expectations may have been changed by the epidemic or personal
education about treatments. Despite the dedication most physicians
feel in the epidemic, nothing has fully prepared either doctor or
patient for the crisis they now face together. A few helpful hints,
doc:
Some physicians express fear that monitoring implies
agreement. When someone asks to be monitored in a course
of treatment, it doesn't imply agreement - only support
for the patient's general well-being. There are no legal
precedent s in AIDS in which a physician has been accused
of malpractice for taking blood counts while a patient used
a drug against his or her recommendation. It is not common,
after all, for a doctor to deny care to a patient involved
in recreational drug use or abuse, so there seems little
basis for refusing to monitor use of a drug taken in the
interests of healing.
In most instances, patients will use a treatment anyway if
determined to do so and the doctor is unable to sway them
against it. Refusal to monitor diminishes a patient's
confidence and actually may increase the risk of harm.
For a variety of reasons, some physicians just can't seem to
prescribe an unapproved treatment. Yet, many others can, so there
is no unanimous consensus of medical or ethical opinion weighing
against doing so. When all a physician can do is just say "no,"
the patient has right to know why - and, always, a right to a second
opinion. This is equally true of diagnosis, prognosis, and treatment
strategy. As long as a patient's request is calm, friendly, and
well-informed, an equally well-informed and candid response is
expected of the physician.
When disagreements exist despite a cooperative relationship, it is
difficult to know what to do. In consideration of active disease
states, such as a bout of PCP, the doctor's expertise must lead
the way because the course of treatment is better known and, in
many instances, there is a degree of medical consensus. Exceptions
might occur in institutions or areas of the country where expertise
with HIV is not at a state-of-the-art level, or where bureaucratic
procedures might hamper the quality of care (such as in the V.A.
system). In such instances, a second opinion should always be sought
from practitioners in the leading AIDS hospitals.
When considering treatment of HIV infection and immune deficiency,
disagreements about treatments often occur in a very different
context. When patients may have as much information as the physician
about experimental therapies, each may arrive at different conclusions
based on similar data. This presents a challenge for both. A
physician must feel that he or she is practicing sound medicine,
yet the patient may feel he cannot compromise on a treatment option
he considers essential to his health or survival. In this instance,
both must strive to listen and understand the other's views. Rather
than butting heads must seek to find ways to satisfy the other's
needs and concerns. Both must begin by acknowledging a common goal
of keeping the patient alive and maintaining health. The patient
might ask:
Sometimes, it is possible to find new alternatives that neither
party had expected before the discussion began.
While this type of dialogue can be very productive, it won't overcome
every possible obstacle. Patients cannot expect physicians to
heartily support the use of remedies for which there is no supporting
evidence of any kind. Nor can patients realistically expect physicians
to give the same credence to highly experimental approaches as they
would to better proven therapies. And physicians no longer can
realistically expect patients to "wait and see" indefinitely while
the research proceeds. At the very least, both parties must take
the time to fully understand each other's beliefs and the reasoning
behind them. Simple confrontation over opposing conclusions is
unproductive for both.
If, in the final analysis, the physician cannot feel comfortable
cooperating with unapproved or unorthodox treatment strategies, and
the patient is equally firm in his or her convictions, then physician
and patient must question whether it is possible to continue having
a mutually acceptable relationship. In many instances, it is possible
to maintain the relationship while disagreeing and continuing to
communicate over the differences. The option of changing doctors,
which is always present, should be reached only as a last resort,
and only when it is clear that the parties cannot accept each other's
approach to the relationship. Each of us must ultimately find the
combination of patient, physician, and approach which makes a
cooperative relationship possible.
"What will it take for you to feel comfortable with what
I want to do? More careful monitoring? Reviewing the decision
in a month or two? More review of available data? Discussion with
other physicians? A statement releasing you from liability?"
Similarly, the physician might ask:
"What can I do to help you better understand the risks and
why I'm concerned with what you want to do?" or "What
other options, if any, have you considered?" or "Will
you wait while I review the matter more carefully?"
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From Project Inform, for more information contact the Project Inform Hotline, 800-822-7422.
Patients:
Doctors:
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