"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 addressed.

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 experiencing.

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

Dear Editor,

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 accountability.

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!

Lee Cantwell

Holtby's Response:

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