Michael E. Holtby, LCSW, BCD
"Don't Trust Your Doctor"
First published in Resolute!, February, 1998
Not to be reprinted without permission of the author.
Unless you believe that M.D. stands for "medical deity," we have to conclude that our doctors are only mere mortals. Of course, they can be heroic lifesavers, and compassionate healers, but don't bet your life on it! Being human they can be harried, hassled, forgetful, overlook things, and generally screw up. There is only one expert with regard to your medical condition, and that is YOU! This is particularly true in an era when you may be seeing several doctors, each treating a piece of you. Ken Greenberg, D.O., Pharm.D., one of Denver's infectious disease docs with an HIV practice, points to the added complexity of the latest drug combinations which compete with all the other drugs you may be on for processing through your liver. This makes some medications incompatible with your drug cocktail, and others weaker or more potent. If you aren't keeping careful track of all your meds your various doctors' treatment regimen may be in conflict.
It is imperative that you assume responsibility for your health care and not
be passive and compliant. I am not advocating you have an adversarial
relationship with your doctor, but it is your right to insist on a collaborative
one in which your doctor is not your boss, but a colleague. Bernie Siegel, MD
has written, "It is when I can help my patients find what Schweitzer called the
doctor within -- when I play coach, as one of my patients put it -- that I am
most fulfilled in my role as doctor and I serve my patients best. We become a
team with joint participation and responsibility."
In a now classic study by Dr. George Solomon and Dr. Lydia Temoshok they
found that among the qualities of long term survivors of AIDS was "A sense of
personal responsibility for one's health, and a sense that one can influence
health outcomes," and "perceiving the treating physician as a collaborator, not
interacting in a passive-compliant or defiant mode."
This approach has a long history dating back to the origin of the PWA acronym
when "patients" became "people". In 1983 the "Denver Principles" became the
basis of the PWA movement predicated on self-empowerment. In the words of
Michael Shernoff, MSW, "Self-empowerment in its simplest form means taking
charge of your own life, illness and care. Another way of putting it is to say
that self-empowered individuals do not give away their power or allow others to
infantalize them. People with HIV/AIDS need to learn to view themselves as the
experts about what they need and what is involved in taking care of themselves."
PICKING THE RIGHT DOC
Our area's pre-eminent physician in collaborative health is probably Charles
Steinberg, M.D. in Boulder whose old Wellspring Clinic used to have the motto,
"Partners in Health". He believes such a relationship is "crucial" . Steinberg
emphasized to me the added importance of collaboration now that the new
combinations makes compliance so difficult. You have to feel like it is your
plan, not something imposed on you in order to put up with such a rigorous
drug regimen. As Steinberg says, "the patient has to do all the work."
Bob Janowski, M.D., who sees many of Denver's PWA's says in the current
consumer climate a collaborative relationship is a "marketing necessity": "I
don't think any doctor these days would be surprised or adverse to an involved
patient." On the other hand, I recall one doctor presenting on his HIV expertise
who kept referring to his patients as "the host". You want to be a person, not
just a virus' home. Franz Kafka said, "To write a prescription is easy, but to
come to an understanding with people is hard."
You also want to be sure that your approach and values are compatible, and
you need to establish this early on. In order to do this I would suggest you ask
questions about alternative or complementary medicine, ie. herbal remedies,
acupuncture, psychotherapy, massage etc. As Janowski points out, the intent of
such questions is not to "demean the physicians -- although it is pretty obvious
that hardly any doctor of medicine would feel competent to answer such queries.
Raising such questions signals the roles the patient sees himself and his
physician as playing."
Another subject to discuss is dying. If your doctor avoids or dismisses this
topic, he/she probably won't serve you well. The dying process is one in which
you want options carefully explained to you, and your decisions respected. You
may be a long way from being a "short-timer", but life is 100% fatal and
personally, I want to be prepared. A doctor who feels like a failure if his/her
patients die is not going to be there for you in the end. All the doctors I
know, who haven't burnt out in the field of HIV, are as much interested in
healing as in curing. The distinction is important, as Siegel observed, "If
there is a compulsion to cure, which is frustrated, out come the destructive
tendencies, and doctors destroy what they cannot cure." Interestingly, I found a
similar observation in the writing of a cancer specialist, David Spiegel, M.D.:
"If cure is everything, then harm will be done when cure is impossible."
CULTIVATING YOUR RELATIONSHIP
Do your best to humanize the relationship. As Siegel says, "Go out of your
way to form a relationship with your physician in the same way you would to form
a working relationship with anyone else important to you." Work on a first-name
basis. My wife, who has a doctorate degree, had a doctor who called her by her
first name but insisted on being called Dr. Needless to say, that physician's
care of my wife is history!
Come to your appointments armed with a list of questions, and announce at the
beginning that you have an agenda. Too often people say, "Oh by the way..." at
the end of an appointment, and set themselves up to not have their concerns
Take a friend or family member with you to any appointment you anticipate
being in an emotionally vulnerable state, or when your own anxiety may block
your ability to think clearly or absorb what your doctor is telling you.
Don't wait to get help or hide symptoms because you think you're being a
hypochondriac. In fact, so you can provide good information, its a good idea to
keep a daily journal of your symptoms, side effects, sleep, eating and bowel
disturbances, as well as subjective experiences like levels of depression,
anxiety and agitation.
Another good suggestion is to befriend not only the doctor, but his nurse,
and the office staff. If you humanize your relationships with these people as
well they will become invaluable resources.
And finally, when your doctor or his staff do something right, be lavish with
your praise and appreciation. Spiegel writes, "Think of it as shaping their
behavior by providing positive reinforcement for doing what makes you feel
good." They are human, and a card from you can make their day.
DOING YOUR HOMEWORK
I hear people say, "I don't want to devote all my time to HIV, and
be reminded I am sick. Its not thinking positively." I think this is denial in
disguise. Spiegel says, "Since serious illness makes you feel helpless, take
every opportunity to feel as much in control of your treatment as possible."
Take the time to do your homework!
There are so many resources available to you. Besides Resolute!
there are a number of other newsletters such as Beta, and AIDS
Treatment News. There are two national magazines, and a plethora of web
sites (see November, 1997 Resolute!). I also believe one of your best
resources is regular contact with other PWA's. You can do this through
friendship networks, Internet chat rooms, mailing lists and newsgroups, local
support groups, or HIV psychotherapy groups. You need someplace to trade
information, and hear what others are doing to solve the same problems you are
If a doctor is threatened when you bring up things you have read, or heard
from other PWA's, he's not the right one for you. As Janowski observes, "We must
be humble, because we are constantly confronted by patients who have done their
research. Even within the area of my own expertise in allopathic health care, my
patients often know specific facts and late-breaking news I have not yet heard."
GET A SECOND OPINION
A good doctor is not going to take offense to your seeking other information,
including from other doctors. My Tuesday evening HIV group had concerns that a
second opinion from Denver area docs wouldn't yield a fresh enough approach, on
the rationale that they all exchange information and go to the same conferences.
Some members of this group have the free airfare or financial resources to
consider going elsewhere for a second opinion. One member had read a recent
U.S. News & World Report which rated the top two medical centers
for the treatment of HIV as Johns Hopkins and San Francisco General. I contacted
my friend, Kevin Mallinson, R.N., a Ph.D. candidate at Johns Hopkins, and here
is his response:
"I am sure some would find this hard to believe, but your HIV group would
probably find very little variation these days in AIDS care. I say this because
our specialty has perhaps the fastest highway of information of almost any these
days (fax, e-mail, numerous conferences, ANAC, etc. and many, many newsletters).
Yes, there may be small differences in approach, but pretty much everyone
(mainstream) is on the same page. This may be good or not so good... that
remains a matter of debate."
I got the same opinion from William Woodward, D.O., at the St. Joseph Medical
Center in Reading, Pennsylvania: "HIV treaters are in communication with each
other around the world, as this mailing list proves." I don't quite agree with
them that "pretty much everyone is on the same page," particularly when it comes
to dealing with managed health care. HIV is a particularly complex specialty,
and studies have documented the fact that PWAs do better with doctors who see
lots of HIV in their practice. This is true whether the health care provider you
need is a PCP (primary care physician), or a psychiatrist. One of my clients
needed an antidepressant and went through the maze of his managed care system to
finally get a prescription. Upon calling the manufacturer of his protease
inhibitor, he found the antidepressant he was given was counter-indicated as
competing with his drug cocktail to be metabolized by his liver.
Finally, be an activist. Eldridge Cleaver once said, "If you're not part of the solution, you are part of the problem." The problem now in health care is that the patient is no longer the customer. Employers determine the level of medical benefits, and corporations whether they are insurance companies or employers are most interested in the financial bottom line. One doctor in a Denver HMO was told he should average 8 minutes with each patient to be cost effective. It is only consumers who can stem the tide of this trend, and put the power back in the hands of patients.
Letters to Editor: Resolute! Published March, 1998
In Mike Holtby's column titled, "Don't Trust Your Doctor," he doesn't go far
enough in holding our health care providers accountable for our care. Frankly,
the notion of it ultimately being the patient's responsibility to make sure
their doctor's treatment recommendations are correct is ludicrous at best.
That's like saying that when you contract an architect to design a building,
that it's your responsibility to make sure the building design is structurally
sound. I don't think so. The doctor is supposed to be the expert, not the
patient. That is not to say doctors can't make mistakes, but in general, they
should be few and far between. Granted, HIV disease is not easy to treat given
that each individual's disease manifests itself differently. However, the degree
of difficulty in disease treatment does not absolve the doctor of her/his
This may seem like a harsh view, but I have found too often that HIV doctors
hide behind the "standard of care" rather than go the extra mile to incorporate
the most current and best HIV information into treatment decisions. So there is
no confusion, I am saying that the "standard of care" has been lagging far
behind the current advances in battling HIV. One example is how long it took the
powers that be to remove monotherapy from the first line of defense "standard of
care". I know of countless examples of bad treatment recommendations being given
that were consistent with the "standard of care", but inconsistent with more
current, better information that was widely available. A good doctor should be
plugged in to some of the best sources of HIV info (see Doing Your Homework).
That doctor should also dedicate a minimum of 1 to 2 hours per week reviewing
the latest articles and information bytes. Remember, many of the treatment
recommendations given by an HIV doc are a matter of life and death, so they
should not be made with limited information.
Last but not least, if an HIV patient is able to, she/he should be tapped into the HIV info sources as well. This provides a backup to your doctor's wealth of knowledge as well as a very valuable second opinion...Your Own!
I would make a distinction between what the doctor is supposed to be
or do, and the reality of Murphy's Law. Poz Magazine (Feb. '98)
provides a perfect example. They report ten serious prescription errors due to
the similarity between the names of different HIV drugs (ie. Retrovir vs.
Ritonavir), and the poor legibility of doctor's scripts. As Mr. Cantwell
concludes his letter in other words, the buck stops with you... and that was the
point of my article.
Last messed with November 15, 2001
Copyright(c) 2001 Michael E. Holtby, LCSW. All rights reserved.