Surviving and Thriving with AIDS: Hints for the Newly Diagnosed Michael Callen, Editor

©1987 PWAC NOTE: THIS IS OLD NEWS, posted for historical research only. The medical information herein is extremely outdated!

DOCTOR/PATIENT RELATIONSHIPS:
WHAT TO LOOK FOR IN A PHYSICIAN

WHAT TO LOOK FOR IN A DOCTOR
A Conversation between Michael Callen and Robert Herman

[EDITOR'S NOTE: The following are excerpts from a conversation between Michael Callen and Bob Herman.
A complete transcript of this series of conversations will be published in a forthcoming pamphlet.]

BOB: It's important when you're first meeting with a new doctor that you discuss their philosophies: in terms of drugs (treatments and pain medication); your wishes concerning being kept alive on mechanical means; who you want to be in charge of medical decisions if you become incompetent.

And you should write all of that down and give it to your doctor so that he has those things in your file. What's most important is that you feel that your doctor's philosophies basically agree with your own. Because you're not going to be able to make those decisions for yourself if they come up; and unfortunately with AIDS, it's a very strong reality at some point. I guess what I'm saying is that you need to develop a sense of trust--trust that your doctor will respect your wishes.

I wanna know that my doctor will freely give me any pain medication necessary. I need to know that when and if I am at that point where pain is unendurable, that my doctor will ease that pain and insure that it's as easy and soft and gentle as it can be, and that there's no hesitation to that.

That's important. It's important that they not just say it, but that you feel that that's where they're coming from.

My current doctor gives me a big hug and kiss when he leaves me in my hospital bed. He's absolutely amazed and amused that I'm as knowledgeable as I am. It's great; I need that support from the doctor. I need to feel that I'm not just being a pain in the ass, but that I am doing the appropriate things.

The other thing that I would say about being a difficult patient is that if you look at statistics, difficult patients are the survivors.

MIKE: That's right!

BOB: You must--in asserting yourself--you must remember that. It's a quote that you should ingrain in your forehead. Difficult patients statistically are the survivors!

MIKE: And we're not talking about, you know, intentionally obnoxious or rude or gross people; we're talking about "difficult," meaning...

BOB: Demanding the little extra things.

MIKE: Those who participate in their own healing process. Doctors get used to being omniscient and not having to explain why a procedure has been ordered, what a drug is for; many are simply not used to answering intelligent questions. But you seem to be suggesting, and I certainly agree, that like any other service, you shop around.

BOB: Hold out for a doctor who will answer your questions, who you feel comfortable with, who will let you participate in your healing.

MIKE: You've switched doctors several times. Why? How did you do it? How did you find a new doctor? How did you let an old doctor go? And just generally, can you review what you believe you can demand--can expect--in a doctor. That would be the first question I'd like you to answer.

What you would say to someone who's looking to choose a primary physician. What can they expect? What should they expect. how do they go about auditioning doctors and then I'd like you to talk about the process of switching doctors.

BOB: I found it, and I think most people do, very difficult to switch doctors, because (1) you're going to somebody else who's new and you feel like you're cutting off...a lot of people feel like they can't change doctors cause if they do, they've burnt a bridge to their old doctor. And when you're ill, that's a hard thing to do, because at least you know what you've got with your doctor--there's a certain security, that he knows you and your problems to a certain extent.

And also, when you're ill, it's very hard to wanna go to somebody new and have to go through your story again--and all your problems, to make this new person understand how they can best treat you. I was very resistant to it every time I did it, which was twice. Twice since I've been diagnosed. But I'd done it before that too. It's in some way, it's like buying a car. Like buying a used car.

To some extent you have to trust--I will always, if I'm in that situation, I will go with a recommendation from somebody who I respect but you've gotta get into the car and take a test drive, and it's unfortunate but that's about the only way you can tell. You need to have a talk with your doctor. Does the doctor give you a quick once over and send you out on your first visit? Is he taking the time to talk to you a little bit?

You must talk about things like living wills and pain medications and treatments and try to get into those kinds of conversations so you'll get a sense of the doctor's emotional qualities and whether they are in tune with yours or not.

MIKE: So again you're talking again about trusting your instincts.

CHOOSING A DOCTOR IN WESTERN NEW YORK
by Russ D.

Here in Western New York we are limited in the availability of medical resources to deal with AIDS. At this end of the state, there are a couple of university-affiliated hospital/medical centers, and a few "community" doctors willing to see PWAs without being especially knowledgeable about AIDS. Take your pick--there's not much difference between the two hospitals.

At the university clinics you're confronted with two very powerful institutions: the medical and the educational. The emphases here are on labels, diagnoses, theories and, perhaps most importantly, a rigid stratification. The attitude is strictly professional, often arrogant, and sometimes outright chilling. It says, essentially, "I am the doctor. I know everything." The patient is often tolerated as a necessary, if bothersome, part of the process. My doctor, with a straight face and in all sincerity told me months ago, "My patients don't ask me questions." The dead ones, anyway!!!

Practitioners can speak eloquently and at length about the difficulty in providing services to PWAs. This is, of course, easily understood by any thoughtful person. However, I have found those occasions when my doctor indicated an understanding of what AIDS means to me in my life as rare indeed.

Several months ago I was hospitalized. I went in terrified, a fact which I shared with my doctor. I constantly besieged my doctor with questions about the many, and often painful, procedures I underwent. His standard response, for as long as four weeks after hospitalization, was to the effect that he had not yet had the opportunity to review the results. That's either a lie, or he's just not a very conscientious doctor.

Finally, desperate, convinced he was holding back some terrible news, I made an appointment to see him in his office to discuss my concerns. He conducted his meeting without the benefit of having my records in his office. Discussing the various aspects of my case, he more than once muttered, half to himself/half to me: "Is that you, or am I thinking of someone else?"

I was so furious, so hurt and angry, that I simply left, my trust severely eroded. It is unlikely that I could again have confidence in him. I would always have nagging doubts about anything he said.

His answers to my questions betrayed an attitude that I did not need, or perhaps could not handle: accurate information. For example, he once told me that my lymphocytes were down. I inquired what is that, what does it mean. He sighed and responded "They're blood cells." Such patronizing non-answers provide no information at all and, in their evasiveness, contribute in no small way to my fears. Furthermore, he betrays a lack of respect for my intelligence and my dignity as a person.

I believe that the most effective medicine against the disease is straightforward, accurate information. When I try to reason with him about my need and desire for information, he's agreeably understanding and says things like, "We'll have to do something about that." I wait!

I've pretty much decided, $11,000 later, that this doctor can offer me nothing positive or constructive in my efforts to heal. Indeed, he frustrates and undermines my efforts, especially when he makes evident his disdain for my pursuit of other treatment modalities: spiritual work, vitamins, acupuncture, etc.

If I remain with this doctor, he will lead me to a great despair and an early death. The medical profession has no stake in PWAs getting better before science discovers a "cure." To paraphrase a fallen hero, Diego Lopez, if I die from AIDS, I will consider it an act of murder by my government, aided and abetted by American medicine.

However, despite my anger and bitterness over these experiences, or perhaps because of them, I continue to learn and grow. When I first learned I had AIDS, I felt devastated. I wanted just to die and get it over with. I felt no hope; I alternated between denial and an almost crippling despair.

Things came to a head for me when I was in the hospital. Relieved of my normal routine, lonely and scared, I began to think about coping, growing, and living. A friend said to me "When I look at you, I see someone who is loving, not someone who is dying." Others may have said that to me before, but this time was like hearing it for the first time. This was a turning point for me, and is often my rallying point when I'm low.

I'm learning to care about myself as never before, and to care FOR myself. I choose life everyday. I am not sure of a cure in my lifetime, and accept that AIDS may be the cause of my death (though I don't know when). I strive for healing, the kind that Stephen Levine describes as "touching with love that which had been touched with fear and hatred."

We're all going to die; what matter is how we live our lives. This requires of me a complete and often painful transformation of all aspects of my life. But AIDS has turned my life upside down anyway. This crisis in my life forces me to heal in those areas that have long needed healing. It's really not easy for me to do this, but it is infinitely more empowering and fulfilling than simply waiting to die.

Though AIDS is assuredly a terrible thing to happen to anyone, and the worst to happen to me, in some crazy way it's a positive force in my life. Someone recently said to me, "Look what God (the Universe) had to do to get your attention." Along the way there have been many signs and warnings of the need for healing in my life, but I kept putting it off until tomorrow. When you realize that there is no guarantee of tomorrow, today is the day to do it.

Don't misunderstand my above comment. God did not give me AIDS, and AIDS is not my punishment. AIDS is a consequence of the way I've lived my life. I'm responsible, but not guilty. None of us are guilty--we had no idea of the risk we were taking, and we never saw this coming. But now that it's here, we can make a choice to let it destroy us, or to somehow find a way to use it for a higher good. And it is a choice, always!

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