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Finding a Doctor |
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As a person living with HIV or AIDS, you face an enormous challenge: keeping
yourself as healthy as possible for as long as possible. To do that, you'll
need to take a very active role in managing your illness. Once you've "taken
charge" of the situation, you can begin to assemble a health care team that
meets your personal standards for treatment and care.
You might assume the first step in this process is finding a doctor-but in reality, that's not enough. To have a real fighting chance, you'll need to find the right doctor for you. Your ultimate goal is to build a comfortable, ongoing relationship that will
provide the foundation of your medical attack. Coping with an Insensitive or Rejecting DoctorYou may choose to continue with your current physician or find an HIV specialist to work with your present doctor. Some physicians may resist caring for HIV-positive patients because they don't feel comfortable dealing with the complexities of the virus. This is a relatively new disease, treatments can be toxic, and recommended therapies are constantly being updated. Your physician may want you to go to a more informed and experienced colleague. (Remember, it's in your best interest to go to an M.D. with experience.) If, however, you feel you've been denied treatment or illegally discriminated against, and you need a constructive way to channel your hurt and frustration, write a letter detailing your objection to the doctor's behavior. Send copies to the doctor, his specialty's medical society, and the chief of staff at the hospital or clinic he's affiliated with. (Save a copy for your own records.) You can also complain to an attorney, or:
The Illinois State Medical Society
Then, let go of your anger and move on to more important issues-namely, you and your care! There's no point in trying to force a reluctant doctor to work with you. It's a waste of time and energy, and unlikely to result ineffective (or pleasant) care. Why You Need an HIV SpecialistEven if your current doctor is extremely supportive, you'll still want to evaluate whether she or he is the best choice to help you deal with this new threat to your health. Some people with HIV go on seeing their "regular doctor" for the sniffles and such, but work with a specialist to monitor
their immune system and treat HIV-related conditions as they arise. If you
decide to stick with your regular doctor, you'll want to make sure that she
or he knows enough to spot HIV warning signs and refer you for treatment when
necessary. (More than half of all HIV patients in the Chicago area are cared
for by family practice M.D.s.) Characteristics of the "Ideal" HIV SpecialistThe "ideal" HIV specialist is a licensed physician who:
Finding the Right HIV SpecialistYou can get names of doctors qualified and willing to treat people with HIV and AIDS from various sources, including:
Streamlining Your CareYou may find you need a variety of medical and non-medical services. Maybe you have children, or more than one member of your family is HIV-infected, or you have day-to-day matters you want help with. Whatever your situation, it can get tricky and exhausting to run all over town taking care of your business. When deciding on a doctor or clinic, it's a good idea to ask if other types of services are provided besides medical care. Some clinical care providers offer other kinds of care on site, which can make things easier for you. For instance, Cook County Hospital's Women and Children's clinic offers a "one-stop shopping" approach, where you can get several types of services in one place--including specialized medical care for you and your children, clinical drug trials, support groups, counseling, help with practical problems such as housing, insurance, or entitlements, and chemical dependency treatment. Other programs also offer useful combinations like these. Besides saving you valuable time and energy, choosing a "one-stop" care facility will help to assure that you actually do take care of all the things you need to. Multidisciplinary HIV services provided in a single setting also are likely to be delivered with a higher level of expertise and sensitivity. The staff is apt to see more of the total HIV picture, rather than just pieces of it. If child care, transportation, or other matters are obstacles for you in
getting the care you need, talk with your doctor to see if the clinic you
visit can offer any help. 1. Physician Referral Services in ChicagoAIDS Foundation of Chicago
2. Chicago Hospitals and HIV ClinicsSome local Illinois hospitals offer other HIV-related services (like home health visits, hospice care, and support groups) in addition to inpatient and outpatient medical care. Ask for details when you call. (If the Physician Referral Department isn't aware of these alternative programs, ask to speak with someone in Pastoral Care.)
Narrowing Down Your OptionsAfter you've selected several good candidates for your new HIV specialist, you'll want to narrow them down and make a choice. If you have an HMO, make certain the doctors you have in mind are on its acceptance list. On the other end, you'll want to make sure the doctor's office or clinic accepts your insurance. It's also a good idea to find out if they'll accept Medicaid, whether or not you currently have it. If you don't have any insurance, your options may be limited to doctors affiliated with public hospitals and health clinics. The best way to choose your new doctor is to have an initial visit with each candidate and decide from there if you want to sign on with one of them. In his best-selling book Final Exit, Derek Humphry gives some excellent advice on how to conduct this screening process with your "finalists":
from Final Exit, c1991, The Hemlock Society. reprinted with permission
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Working with a Doctor |
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Finding the right doctor is only half the battle. Once you settle on one,
you'll need to learn how to work together effectively. It's important to
establish a partnership with the doctor right up front. Make sure it's
understood that you intend to take an active role in managing your illness
and expect to be involved in all decisions affecting your care.
In general, be respectful but assertive. Speak as well as listen; lead as
well as follow. Keep the lines of communication open at all times. Between
visits, don't be timid about alerting your doctor to new developments in the
field. At the same time, ask your doctor to keep you informed. The "Baseline" ExamYour first real appointment with your new doctor will probably involve a "baseline" examination. The purpose of this is to find out how well your immune system is functioning now, and establish a point of comparison for changes that may occur later on. If you're working with an HIV specialist, she or he will want to run a T cell count, order a baseline chest X-ray, give you a skin test for tuberculosis and perform a thorough physical exam. Be prepared to answer a lot of questions about your lifestyle and medical history. If you have a record of your previous vaccinations, bring it with you. If your vaccinations aren't current, now might be a good time to renew them. Plan to bring along any medications, vitamins, or health supplements you are currently taking for the doctor to review. Female patients will need some additional tests. Women living with HIV are especially prone to recurring gynecological problems such as vaginal yeast infections and pelvic inflammatory disease. Cervical cancer also is more common in HIV-positive women. If the doctor doesn't think of it, you may want to request a PAP smear and tests for sexually transmitted diseases and cervical abnormalities at this time. If you decide to continue working with your "regular" doctor instead of an
HIV specialist, there might be some confusion as to which tests are needed or
what early warning signals to watch out for. If that's the case, you and your
doctor may want to do some preliminary reading, or consider a specialist for
an initial consultation. If you don't mesh well with the specialist, tell
your regular M.D. and ask for a referral to a different specialist if the
need arises again. Resources for ProfessionalsAmerican Medical Association
Regular Health MonitoringAfter this baseline visit, you'll want to have regular checkups in order to monitor your "immune status" (meaning your ability to resist opportunistic infections). Do this even if you feel fine and have no symptoms. HIV can progress without notice. Keeping a close eye on it will help you know when to take specific measures to prevent serious disease. You and your doctor can decide together on how frequent these checkups will be. If you are ill or taking medication, you'll probably be seeing the doctor more often. Women also are advised to have more frequent gynecological exams. At your baseline checkup and each regular visit thereafter, feel free to take notes or run a tape recorder if it will help you remember the doctor's instructions. You also may find it helpful to start a journal in order to keep track of symptoms and/or questions between visits. Bring this journal to your doctor's office to help you remember. At each appointment, describe as thoroughly and specifically as possible any symptoms you may have had. Learn to discuss your situation frankly. Detailed information about your lifestyle, eating habits, sexual practices, and use of alcohol, tobacco, caffeine, and other drugs will make your doctor better able to evaluate your health and help you arrive at appropriate treatment decisions. It may help to remember that anything you discuss will be kept confidential. Also, most experienced M.D.'s have "heard it all." A good doctor is not likely to be shocked or distressed by anything you might choose to reveal about yourself. You may find it difficult to assert yourself where your doctor is concerned. However, it's the only way to become a full, responsible partner in your medical care. Don't feel you have to be a "good patient" and not take up too much of the doctor's valuable time. Your time is just as valuable, and your questions and concerns every bit as pressing as anyone else's. Also, now is not the time to worry about appearing ignorant. Don't be afraid to ask the doctor to repeat or re-explain something you didn't understand at an earlier visit. For all their skills and talents, doctors are not mind-readers. They won't know you still have questions unless you ask.
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Patient Rights
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In working with any health care professional, you have certain rights and
responsibilities:
By the same token:
If all goes well, you and your doctor will build an effective, trusting relationship capable of lasting for many years. If not, you may eventually decide to look for another primary care physician. You'll probably know in your gut if things aren't working out. Don't be afraid to pursue other options at any time during the course of your illness.
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Finding and Working
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In addition to finding a doctor, you'll also want to look for a dentist who
serves HIV-positive patients. It's more than simply a matter of good dental
care; HIV infections of the mouth and gums are common and can be severe. Your
current dentist may not be equipped to treat you effectively should the need
arise.
Unfortunately, finding the right dentist can be more difficult than finding the right doctor. Many dental procedures are invasive and therefore viewed as "risky" to both dentist and patient. In the past, dentists often gave that as their main reason for declining to treat people living with HIV and AIDS. A more likely reason was their fear of what may happen to their practice if "word gets out" they treat people with AIDS. The Illinois Human Rights Commission has ruled that it is illegal for a dentist to refuse to treat HIV-positive patients. The American Dental Association has condemned this behavior as unethical. That said, there are dentists in the Chicago area who are able and willing to treat you. You can get referrals through others living with HIV, AIDS service organizations, and by contacting the resources below. In choosing the right dentist, you may decide to go through a selection process similar to that of finding the right doctor. Once you've chosen a dentist you feel comfortable with, take the same care in tracking and reporting symptoms, asking questions, and participating in treatment decisions. Be prepared for your dentist and his staff to take the "spaceman approach" in
dressing for your visit-full gloves, face masks, and eye coverings. Try not
to take offense; you haven't been singled out for special treatment. In fact,
dental and disease control authorities now require that dentists wear those
infection barriers with all patients.
Dental Referral Services in the Chicago AreaChicago Dental Society
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