Pointers and Prerogatives From and for the Unrepentant Problem Patient
By Carlton Hogan
|“AIDS, when you come right down to it, is about loss. Health, life, mobility, financial security, independence, appearance, dreams: Virtually everything is eventually taken away from us.”
— Carlton Hogan, 1961-2003
“Preparing That Oscar Scene”
On Wednesday, November 19th, Gregg Gonsalves circulated this short and sorrowful e-mail: “One of the great AIDS activists died today. Many of you didn’t know him personally, but Carlton was one of the community’s key experts on clinical trial design and biostatistics and taught many of us how to look at clinical research and AIDS care. He was a mentor to me and many others.” We are all saddened by this great loss and offer our support and condolences to Carlton’s family. For those who did not have the honor and pleasure to work with Carlton over these 13-odd years, this excerpt from one of his many Web site postings may help to color in the many facets of this incredible man and incorrigible activist.
Let’s face it: “Problem patients” often live longer. We may not make a lot of friends in the medical establishment (although it is heartening how many doctors and nurses are beginning to recognize self-empowerment for the positive life force it is), but hey, if making friends were our main objective, I’m sure we could find better places than hospitals anyway. Problem patients have very strong opinions about what is in their best interest, and while willing to listen to reasonable alternatives, are tremendously stubborn when they feel it necessary.
Being a problem patient is easier than it looks. And the results are often quite satisfying. But the point is not to be obnoxious. As a matter of fact, in most situations, you truly can catch more flies with honey than vinegar (the proverb never said why you would want more flies, but maybe they’re a necessary evil, like residents …). It’s probably best to be Little Susie Sunshine until something comes up that might have serious impact on your health or comfort, and then dig in your heels and become the patient from hell until the problem is resolved, at which point you can go back to smiling angelically and humming “The Sound of Music” or something. Positive and negative reinforcement. That’s how you train them. Of course, if you are going to go off half cocked, and make a big noisy scene, it would be much more satisfying (and convincing, so that maybe next time you won’t need the Oscar scene) to be right. That obnoxious, patronizing resident is going to listen a little better next time if you gently (and accurately) point out the essential lab test that he or she forgot, and then sweetly observe, “Boy, that might have made one hell of a malpractice case, huh?”
Of course, you may be like me, and be fortunate enough to have a really good doctor who works in a team with you, your significant others, and all the other available resources to make sure that you get the best care possible. If you are so fortunate, your exposure to medical nimrods will be greatly reduced. Unless you happen to get your care in a teaching hospital, in which case all bets are off. But even in a teaching hospital, you may be able to find a half dozen decent “attendings,” and a double amount of residents so that you are never out of range of a friendly face. Maybe.
Even if you have the best possible situation, with a tremendously committed, available doctor who has full privileges at the same hospital that your insurance pays for, you can still participate in your own health care, and make a big difference. Your doctor may be one of the best HIV-aces in the country, but he or she just doesn’t always have two or three hours to go to the library or to fire up the old PC, and research an obscure complication of HIV disease, or some new treatment made from the wings of Indonesian yellow spotted beetles. Many important innovations in HIV care have come from “problem patients” who have demanded better than the status quo for themselves. The doctor-patient relationship can be a team; after all, the entire endeavor is focused on your body, so you should have some input, right?
Unfortunately, there is a long and infamous tradition in western medicine that you hand over autonomy and control over your own body when you seek care. Put baldly, most of the doors are shut in your face. You can test this, if you don’t believe me: go into the hospital or clinic where you receive your care and ask someone other than your own doctor to let you look at your chart. If you are persistent and aggressive enough, you will eventually find out that it is your full right (with a few caveats, like if you are so out of it that someone else has legal custody of you), but most clinicians will just instinctively stonewall you and deny you access. They are just conditioned to treat you as less than a fully autonomous and competent individual. I’ve even met some clinicians who became very upset when they found out that a patient has full right to access to his or her chart. It’s their Ju-Ju. Why, if patients got access to all their sacred knowledge, their status as witch-doctors of the tribe, those-who-are-not-to-be-questioned, might be jeopardized.
Nowhere is this kind of belief set better exemplified than in medical terminology. Hermetic mystical societies have clearer, less-obscure jargon. “Erythamateous” instead of the good, old fashioned “red?” There is not a single part of the body that doesn’t have a separate medical-speak term. I could understand the need for specialized terms to better delineate and discriminate things that are lumped together in lay terms, but am afraid that I simply don’t see the difference between “edema of the lower extremities” and “swollen legs.” How about “pulmonary?” “Lung-related” seems to cover that OK. Same with “cranium” and head, “cardiac” and heart, “neoplasm” and cancer, “occluded” for blocked … the list goes on and on. If it were a self consistent rational terminology, it might be more excusable. But it’s just an arbitrary mess, with no rhyme or reason to it. Latin and Greek roots are mixed up willy-nilly, sometimes in the same word.
I guess that this criticism might be more relevant if the intent of medical speak were to improve the precision of communication, but I believe that to be a secondary objective at best. As with all “buzz-words,” it’s more a badge of office. Like the handshakes of the Masons, or those ridiculous fez’s that shriners wear, it’s one of those totems that is supposed to indicate “our guys,” whoever they may be. You can see for yourself how protective clinicians are of their pet mumbo jumbo. If you come in spouting a bunch of medical terms, particularly if you use them scrupulously correctly, you will be a good way to having a diagnosis of Munchhausen’s in many doctors’ minds. They restrict access to their pig Latin by making it pathological for a patient to understand what they are saying.
But it’s also an essential skill for anybody with a chronic illness to understand this linguistic crazy quilt. If you hear the doctor mumble, “prep for LP” to a nurse as he or she strides out of the room, wouldn’t you want to know that means they are about to put a long needle into the center of your spine before the doctor is gone, and you can ask no more questions?
Face it, hospitals are big bureaucracies, as prone to screw ups, communication glitches, and mindless SNAFUs as any others. If you are like the typical person with AIDS, your chart is probably more than two inches thick. Do you really think that every doctor who meddles in your care reads it before charging ahead with treatment? Clearly, having someone with full, intimate knowledge of your case always available is essential. Who better than yourself? Of course, if you are in the hospital, you probably aren’t feeling in top form, and maybe you don’t feel up to slugging it out with doctors. That’s why it’s really helpful to make sure that someone else — a family member, your partner or best friend — also knows this stuff, so that he or she can watch the P’s and Q’s when you don’t feel up to it.
But the most important thing is not letting that door be shut in your face. You are buying a service. You have full rights to demand the best possible service, and to use a consumer’s prerogatives in safeguarding your interests. Doctors refer to “doctor shopping” as a negative: manipulative, pathological, and a sure sign of the “problem patient.” Well, they are partly right. It’s certainly the last, as long as the consensual definition of “problem patient” describes someone who demands the best in care for themselves. And if it’s “manipulative” to try and influence systems to take care of you properly, so be it. It’s better they call you manipulative than if they call you “The late …”
Knowing your way around will also help you to understand exactly what is going on with your care. There is no substitute for being able to read your own lab and consult reports, and to be able to understand any changes in your own health over time. And don’t forget, you always get to ask questions. There is a sacred principle in medicine called “informed consent.” It means that you have full rights to as much knowledge as you need to make your treatment decisions. Before any major medical procedure is conducted, some one needs to explain to you exactly what will be happening, and what the potential benefits and drawbacks are.
But what informed consent also means is that you get to ask as many questions as you feel you need to. If there is any part that you are unsure of, you can ask them to repeat it, once, twice, or a hundred times. If there are any words you don’t know, stop the doctor or nurse right in the middle of what they are saying, and ask them what it all means. Before you sign any consent, make sure that you get the gist of what it says. You have the right to fully understand what is going on with you. That is one of the main intents of those consent forms. (The other, of course, is shielding the hospital from liability.) And despite my somewhat harsh words earlier about the medical profession’s possessiveness about their terminology, often a sympathetic doctor or nurse can help you understand things that you need to know. Journal articles, online resources and textbooks can hold incredible amounts of information, but sometimes difficult points are much easier to grasp when they are explained personally. Don’t hesitate to ask. Some clinicians may be abrupt, or overly confusing, but you will eventually find someone who “speaks your language,” who can open lots of doors to you. And never forget. You have a right to know, and to ask, and to decide. It’s your body. This isn’t just nice philosophy. It’s a principle that is woven into many laws and regulations.
There’s no way around it. Having HIV or AIDS definitely sucks. But a good knowledge of medicine, your body, and the systems with which you are forced to interact can make the whole thing much easier to deal with. And never forget: you are a consumer of medical services. You should be able to expect good, appropriate care for your body just as you would expect good services from any other service provider.
More of Carlton’s writings on HIV treatment and research and his life as a person with HIV/AIDS appear at www.actupny.org/documents/Carlton_Hogan_writings.pdf.