Chapter 24

Doctors

Each patient carries his own doctor inside him. We are at our best when we give the doctor who resides within each patient a chance to go to work.

—Dr. Albert Schweitzer

 

This chapter highlights the considerations that go into choosing and maximizing your relationship with a doctor. Even if you already have a doctor with whom you are comfortable, and you may not be looking for another physician right now, I suggest you review the following discussion.

Section 1. Choosing a Doctor

When choosing medical professionals, keep in mind three general considerations:

1. You are the captain and the final decision maker. No matter how educated or experienced a doctor may be, doctors are your advisers and are there to support you.

2. Look for a doctor who fits your needs. At a minimum, you will probably need a general practitioner for your overall health and a specialist in the area of your diagnosis, although it is possible that one doctor can fill both needs. It is generally accepted that “the use of a specialist is a major advantage” for people with a life-challenging condition. For example, a study reported in the New England Journal of Medicine found a lower death rate in patients with HIV if they had an HIV-experienced doctor.

3. After doing the amount of research with which you feel comfortable, trust your instincts when choosing a doctor.

Tip. If you live in a rural area and have a condition that is not normally treated in that area, consider moving to, or at least visiting, a large city to get proper care. You have to weigh the extra Life Units for travel against the possibility of a better quality and quantity of life.

Referrals to a specialist. If you are referred to a specialist because of a particular problem, request a list of all the likely medical causes of your condition so you can assess whether you want a specialist, and if so, what kind. If the recommendation is to see specialists in different areas, prioritize your options according to which specialist is most likely to have the answer. If your doctor can’t prioritize the specialists in this manner, prioritize by the cost to you in money and time. See chapter 25, section 11.2, if you are considering surgery.

1.1 Two Routes to Choosing a Doctor

The “seat of your pants” approach. In this method of finding a doctor, you accept the recommendation of a friend, family member, or another doctor. The underlying assumption is that if “it worked for them, it will work for me.” Choosing a doctor just because she is nearby is another example of this method. While these methods frequently work, it can be a very hit-or-miss proposition.

Brigitte D.’s mother chose her doctor because the friend that recommended him said he was “nice.” She had a seemingly manageable situation for which she was taking twelve different pills a day, yet she was still unable to get out of bed for more than three months. Brigitte got involved and researched the available doctors’ education, experience, knowledge, communication skills, and level of care. The doctor Brigitte recommended was not as nice, but quickly realized that some of the pills were canceling each other out and changed drug regimens. Brigitte’s mother healed in a matter of weeks.

The ordered approach. The more reasoned approach is to do a bit of research before bringing anybody on board.

1.2 What to Look For

In addition to the general considerations listed in chapter 36, section 1, before meeting a potential candidate, consider the following issues:

Training and certification.

• At the minimum, the person must have an M.D. and a state license. While the M.D. is required for a doctor to practice in U.S. hospitals (hospital privileges), the degree only means the person graduated from medical school. Furthermore, a state license is not necessarily indicative of a doctor’s quality (some states only require a degree plus one year of internship to obtain a license).

• Look at the country in which the doctor went to school, the name of the school, and where she did her residency training (post-medical-school training). The more developed the country and the better the school, the better the doctor is likely to be—although there are good doctors from all countries and all schools.

• Doctors who continue their studies in depth in their chosen field often choose to pass a demanding test administered by specialty boards composed of their fellow doctors to become board certified. Board certification is an indicator of additional education. It does not test experience. Some boards require doctors to keep current by requiring periodic recertification. To check whether a doctor is board certified, call the American Board of Medical Specialties (800-776-2378), call the county medical society, or look in the medical directory in your library.

Insurance and payment.

• Will the doctor accept your insurance coverage? Will she file your claims for you?

• If you’re covered by Medicare, does the doctor accept assignment of Medicare payments? Does the doctor charge an amount greater than the Medicare reimbursement? If you’re covered by Medicaid, does the doctor accept Medicaid payments? Your local office of the Social Security Administration keeps lists of primary care doctors and specialists who accept Medicare and Medicaid. If you belong to a Medicare health maintenance organization, it will supply you with a list of doctors.

Teaching, hospital privileges, and lab services.

• Does the doctor have teaching responsibilities at a hospital? A teaching position reflects respect from colleagues and assures that the doctor is exposed to new developments.

• At which hospital or hospitals does she have admitting privileges, and would you want to be admitted there, both from the point of view of convenience and your idea of comfort? (See the discussion about hospitals in chapter 29.) If the doctor admits patients to more than one hospital, how does she choose who goes where?

• Does the doctor offer lab services in the office, and if so, what kind? In-office labs may save repeated trips to an outside lab, and money if the doctor charges less than outside labs for uninsured tests. On the downside, doctors can overuse their own labs for their profit.

Availability.

• Is the doctor accepting new patients?

• Are the doctor’s location and hours convenient for you?

• When it comes to booking an office visit, how many people are given the same time slot?

• What is the average waiting time for scheduling an appointment?

• Does the doctor give advice over the phone to regular patients? Is there a charge for such advice?

• Is there a covering doctor twenty-four hours a day when the doctor is unavailable, or at least an answering service that acts as an intermediary in off-hours?

Tip. To learn a particular doctor’s biographical information, contact the American Medical Association free at www.ama-assn.org or send $60 to 515 N. State St., Chicago, IL 60610 (312-464-5199). You can check board certification by calling the American Board of Medical Specialties (800-776-CERT). You can order a compilation, by state, of doctors who have been disciplined by state medical boards or federal agencies, and why. Call the National Practitioner Data Bank (202-588-1000) and ask for “Questionable Doctors” for the state or states in which you are interested ($15 for each individual state plus $3.50 shipping and handling).

1.3 The Informational Interview

An “informational interview” will help determine whether a particular doctor is right for you. This interview may feel awkward at first, but it can save you Life Units.

Inform the person with whom you make the appointment of the purpose of the visit, and repeat it when you meet the professional. Confirm that the interview is at no cost to you. Otherwise the candidate may think of the meeting as a “first visit” for which you should pay.

To get the most out of the meeting, since time with the doctor will be limited, be prepared to discuss your top three health concerns. Take with you whatever documentation you believe the doctor will want to see (such as lab tests or journals you may have about your symptoms).

Be honest about the kind of doctor-patient relationship you’re looking for. Areas to think about and discuss include:

Your relationship.

• Does the doctor understand and support whatever role you want to play in your health care, including the amount of knowledge you want about drugs and treatments and/or your health condition, and which of the two of you is the final decision maker? Trying to adjust to a doctor’s personality is not a good idea. Sarah McS., a breast cancer survivor, smoked marijuana occasionally to alleviate the symptoms from her chemotherapy, an idea that her doctor not only didn’t sanction, but was dead set against because it wasn’t legal in their state. She dreaded going to the doctor and constantly postponed and often canceled appointments rather than face his judgment. Instead of helping her heal, her visits added to her stress. She finally switched to a doctor who treated her physical condition and didn’t judge her choices.

• Is the doctor willing to function as part of your team?

• If you want to consider alternative or experimental treatments, will the doctor give you an opinion about those options?

• Does the doctor have the kind of bedside manner with which you are comfortable?

Tip. Two decades of research have shown that you’re likely to do better medically if you have a doctor you can communicate with—one who makes it easier for you to be actively involved in your health care. Trust your gut.

The doctor.

• Does the doctor work at disease prevention and health promotion or just take care of immediate problems?

• Does the doctor approach a patient’s health conservatively, trying all procedures that are not invasive and safer drugs first?

• Does the doctor support your current feelings about end-of-life matters such as “do not resuscitate” orders, health care proxies, and living wills? (See chapter 32.)

• What is the doctor’s relationship with other specialists in case your doctor doesn’t have expertise that may be needed?

• Does the doctor project common sense?

• Does the doctor devote full attention to you or do other activities distract her?

• Do you feel rushed? Does the doctor take the time to listen to you and explain things until you understand them?

• When you need other medical services, does the doctor make recommendations or are you left to find them on your own (e.g., home care companies)?

• Let the doctor know about any other person (such as spouse, significant other, or friend) you want to have access to your medical information. Is the doctor willing to speak with that person?

• Is the doctor willing to send you copies of all correspondence she sends to anyone else about you, including to Social Security and your employer?

The surroundings—support staff and office.

• You’ll be looking to the doctor’s support staff for such matters as appointments, getting the doctor’s attention when she’s busy, billing, and often just the sympathetic ear the doctor doesn’t have time for. Are the manager, receptionists, secretaries, and nurses trained in your condition? Are they professional? Sympathetic?

• Does the office appear to be professionally run, organized, and busy?

• Is your appointment kept on time?

• Does it appear that all your needs for X rays or simple lab tests will be met in the office, or will you have to go to another location?

1.4 Managed Care Doctors

Regardless of the type of managed care company you use, take care when selecting your gatekeeper and your specialist. The primary care physician is the doctor who acts as your gatekeeper and who decides which specialists you will be allowed to see and when. The managed care company will usually give you the information you need about the education and licensure of each doctor. Don’t worry about whether the doctor will file claims for you: with a managed care system there are no claims to file. Questions about referrals to other doctors and choices of hospitals are also different, as noted below.

Specialist as primary care physician. Since most of your needs will require a specialist, ideally your specialist should be your primary care physician. There are plans today that permit this. For a more detailed discussion, see chapter 14, section 3.

Informational interview. Regardless of whether the plan allows a get-acquainted visit with the doctors in the plan, or you have to ask the questions on your first visit, find out the following facts, each of which will be helpful in deciding whether you want to work with the interviewed person:

• What the primary care physician thinks about

• the managed care organization (MCO);

• the MCO’s doctor-compensation system; and

• whether the doctor is considering leaving the plan. You don’t want a doctor who resents caring for patients in your plan or who will soon be unavailable to you.

• referring patients with your condition to a specialist, and which specialists she uses.

• matters listed in section 1.3 above under the headings “Your relationship” and “The doctor.”

Also ask the doctor the following questions, which will be useful in knowing how assertive you may have to be to obtain the care you need, and how to assess the doctor’s recommendations:

• How is the managed care doctor paid? If the fee to the doctor is “capitated” and she is paid a set amount per year per patient, the more she sees you, the less money she makes. The doctor may also lose money or possibly even her contract with the MCO if she suggests too many treatments or refers patients to too many specialists.

• Is the doctor bound by any “gag rules”? Many managed care companies prohibit their doctors from discussing certain subjects with patients, for example certain expensive treatment strategies. Federal regulation prevents gagging doctors in Medicare MCOs, and so do some state laws.

Changing doctors. Determine the MCO’s procedure for changing doctors in the event you are not pleased with the doctor you choose.

If a managed care plan doesn’t satisfy your needs. If you have a choice, change plans. However, if you work for an employer that only offers one plan, either pay for your health needs by purchasing your own coverage, or go outside the plan. As a last resort, consider changing employers. Your health coverage is that important to you (see chapter 14).

1.5 Alternative Care Practitioners

Alternative care practitioners use therapies and practices that are founded on philosophies different from those of traditional Western medicine. If you are interested in using an alternative practitioner, whether as a sole source of care or in addition to your traditional doctor, read up on the field of alternative medicine that interests you. Be leery of unrealistic claims such as “guaranteed cures.” Reputable alternative practitioners usually don’t make such claims.

The process of finding an alternative practitioner is substantially the same as in looking for a traditional doctor. In addition, ask the alternative practitioner whether she refers to other caregivers, including M.D.’s, if your medical problem is beyond her skills. If she doesn’t, keep looking.

Do not automatically assume the accuracy of what your insurance summary says about covering a visit to an alternative practitioner and/or prescribed herbs or other treatments. Managed care companies and health insurance companies are now examining this area closely, and some are adding coverage for alternative treatments. Also check with your local hospital to find out if alternative doctors have privileges and if any limitations are imposed.

Section 2. What Do You Want to Know About Your Health and Treatment?

Some people want to know everything that is happening with their health and treatments, and others don’t want to know at all. To exercise control over health-care decisions you need information about the state of your health and the alternatives. However, if you prefer to let the doctor make the decisions for you, that is totally your choice. There is no right or wrong. Whatever works for you is right. The key is to consider these matters before making a decision.

Whatever your decision, communicate your wishes about this subject to your doctor so they can be noted in your permanent health record. Also ask the doctor to let any doctors to whom you may be referred know your preferences as well. If you are referred to another doctor, confirm that the doctor is aware of your wishes concerning this matter. And of course communicate your wishes to any family members or trusted friends who may be involved in your care or have access to your medical records.

Section 3. The Doctor/Patient Relationship

Your emotional state can affect the course of an illness. A key factor in your emotional state is the kind of relationship that develops between you and your doctor. Don’t expect a satisfying, comfortable relationship with a doctor to bloom at your first meeting. Establishing any relationship takes time. But if the relationship doesn’t ultimately work for you, then consider changing doctors immediately.

Good doctor/patient communication is important. In addition to all the physical symptoms and facts that seem to be pertinent to your condition, openly and frankly discuss all relevant concerns, stresses, or psychological pressures with your doctor. She cannot read your mind and won’t know about them unless you tell her.

Feel free to discuss any and all therapies you hear about that you think may be helpful. There is no such thing as a stupid question when it comes to your health.

Also, let the doctor know if you’re not getting the time you need or feel like a number instead of a person, or that the doctor is not putting your best interests first.

Tip. Insist on privacy during important discussions. Ideally discussions between the two of you should be conducted in a private room with the door closed. If you feel intimidated because the doctor sits behind a desk, ask her to move to a place where the two of you can sit together. Do not have important discussions in a busy hallway.

If a problem in communication develops between you and your doctor. Look at whether you may be part of the problem. Get advice from other patients who have handled similar problems and/or from your team members. If you are friendly with the doctor’s nurse, talk to her. Once you’re prepared, speak with the doctor about it. If you don’t want to say it, write a note and deliver it to her. If all else fails, consider changing doctors.

Assertive versus obnoxious. Keep in mind that, of all your team members, doctors are the ones particularly used to being the captain of the team. Thus, you may have to be particularly assertive with your doctor. This can be a good thing. According to researchers at the New England Medical Center, assertive patients stay healthier than similar patients who are not assertive.

If you find you’ve crossed the line into being obnoxious—and if you stay alert, you’ll know when you have crossed the line—it can’t hurt to apologize, remind the doctor that it is your health at issue, and ask for her understanding. You are entitled to any information you request.

Section 4. Visits with Your Doctor

It is easy to become nervous or upset when discussing something as important as your health. Prepare for your appointment by writing down the details of your symptoms, as well as whatever questions and concerns you may have. If a particular question is embarrassing or difficult to ask, consider asking it first.

Tip. If you don’t note them in a journal, it may be helpful to keep a running list on which to note your symptoms, questions, or concerns as they come up. If you follow this tip, your list will be prepared continuously and be completely up-to-date.

Tip. Tell your doctor how your condition affects your activities including your ability to work. Be specific. For example, instead of just “diarrhea exhausts me,” add that you are unable to stand or sit for any length of time and have to be near a bathroom. Ask the doctor to include this information in your medical records. It may be helpful for Social Security and other purposes.

Be sure to understand your diagnosis, treatment, and the purpose of any tests. If you’re not sure whether you understand what the doctor is telling you, rephrase your question or ask the doctor to repeat what was said in a different way. It may help to visualize what is being explained to you. If you need her to show you something instead of telling you about it, ask for an illustration—preferably one you can take home with you. Another approach is to repeat to the doctor what you thought was said. If your understanding is not correct, the doctor will have an opportunity to clarify it.

To remember what is said

• take a notepad to write down the answer. Don’t worry if at first you’re uncomfortable asking questions and taking notes. If you were looking to buy a house or a car, you’d jot down notes naturally.

• take a friend. In addition to helping you remember the doctor’s responses, the friend may even help formulate questions. Choose a friend who thinks objectively, with the capacity to listen and remember accurately. Ideally, this friend can also give you emotional support. Be sure you can discuss all embarrassing details in front of the friend.

• consider taking a tape recorder. You can also play it for friends or family later. Be sure the doctor allows taping before you turn on the recorder.

Tip. Ask your most important questions first in case you run out of time. If you do run out of time, ask when you can speak with the doctor again. This future time (and it can even be a phone call) is for discussing the rest of your questions, asking about information you were told that you don’t understand, or asking follow-up questions after you have digested the information discussed during your visit.

A case study—the Patrick O’Dowd method of doctor visits. Patrick, a person living with a life-challenging condition, uses the following system to maximize his doctor visits. Even if his method doesn’t work for you, it provides some interesting ideas for your consideration.

• With Patrick’s condition, as with most life-challenging conditions, doctors use certain markers to determine the progress of the illness or the effectiveness of the treatments. Patrick keeps his own running chart of the progress of the markers, which he takes with him to each visit. This saves the doctor the time required to otherwise flip through extensive medical records. Patrick’s chart also indicates when different drugs or treatments started, so it is easy to track interventions and results.

• Patrick also makes a point of scheduling an appointment to have the test for the marker done in sufficient time before his doctor’s appointment so there will be new results at which to look. This provides information with which to make decisions. He also makes a point of asking the doctor at each appointment to write another request for the test for the next period of time, as well as to set the date when the test should be taken.

• He keeps a running list that includes all his medications, starting with medications that are to treat his condition, then preventives (drugs to prevent infections from occurring), over-the-counter drugs, vitamins and herbs, and finally painkillers. Then Patrick lists side effects from any of the drugs. Last, but not least, he keeps track of the progress of his “old” symptoms, as well as notations of any new ones. He gives a photocopy of this list to the doctor at each visit, saving additional time.

• Next Patrick writes his questions and concerns in large letters (usually taking two lines) in Magic Marker so the doctor can see the list, its length, and that Patrick is organized. His experimentation has shown that a typed list does not have the same effect of involving the doctor. He also uses different colors or underlining to emphasize matters that are really important to him.

• Patrick takes charge of the actual meeting with the doctor by insisting that his questions and concerns be dealt with prior to the physical exam. Since doctors always seem to find the time for an appropriate physical, Patrick has found if he asks his questions first, the answers are not rushed. Patrick’s agenda in his question-and-answer period (unless there is a reason to follow the doctor’s lead at any particular session) is:

(1) Questions and concerns.

(2) Review lab work.

(3) Review prescriptions (what needs to be added, decreased, or eliminated).

(4) Discuss paperwork that Patrick needs the doctor to complete (e.g., Social Security papers).

(5) Patrick then asks, “Can you tell me anything I don’t know enough to ask?” This question has been known to open discussion about treatments Patrick didn’t know about or that had not yet been discussed.

(6) Open forum for any other matters that may come up. Patrick uses this time to bring up a subject he has learned is of interest to the doctor, such as the latest movies or the local ball team. He finds it helps the personal relationship.

For Patrick’s system to work, both parties have to stick to the agenda and not go off on a tangent.

Section 5. Pain

The doctor needs to know if you are experiencing pain. In your journal or in a separate file, keep a log that includes

• the day the pain occurs.

• when it hurts (including the time of day if applicable).

• the exact location of the pain in your body.

• a description of the pain (such as dull, sharp, pins and needles, shooting).

• the severity (such as on a scale of 1 to 10 with 10 being the most painful).

• how the pain affects your everyday life, such as keeping you awake at night or leaving you unable to move, walk, work, enjoy food, or exercise.

• if you are taking pain medication or doing anything else to control your pain. Note how helpful those measures are. Use the 10-point scale and compare your pain level before you administer treatments or drugs to the level approximately one hour afterward.

Take the chart to the doctor with each visit.

Tip. When discussing pain, be sure to tell the doctor what, if anything, you have found helps relieve the pain, and what doesn’t. For example, tell your doctor if lying down with your feet up helps but lying down with your feet on the bed hurts, or if a heating pad helps but ice doesn’t.

Tip. The pain log will also be important should you decide to file for Social Security Disability benefits.

Section 6. Second Opinions

A second opinion is a consultation about a specific matter from a qualified professional other than the one recommending a particular treatment. No hard and fast rules determine when to obtain a second opinion about a proposed treatment. If a second opinion seems called for, try to get the opinion from a doctor who is not affiliated with the first doctor, and preferably not in the same institution either.

Tip. If the news is significant, consider obtaining a second opinion even when you obtain good news. Damien was told his tumor had dramatically decreased in size and the chemotherapy that had previously been strenuously recommended was not necessary. A second opinion revealed that the tumor had actually grown. Chemotherapy was immediately instituted to great success.

If surgery or another radical procedure is suggested, get an opinion from a person with a different background. Surgeons tend to see answers to problems in terms of surgery, while those with other backgrounds may have a different point of view. If you’re still not satisfied after two opinions, go for a third one.

Many health coverages require a second opinion. Most plans that don’t require it will still pay for it. If you are eligible, Medicare will pay for a second opinion.

If you think a second opinion is warranted, the odds are you should obtain one even if it is not covered by insurance.

Section 7. Medical Records

It’s important to periodically inspect and/or copy your medical records.

• The information permits you to be in more control of your health care if you want to be.

• You can be sure the information is correct. This is particularly important

• for health care decisions down the line (particularly by people who have not treated you before who may not know of the error).

• when applying for insurance, government benefits such as Social Security Disability, or selling your life insurance policy.

• possibly even for insurance costs.

• If your doctor retires or changes location or type of practice, records can become misplaced or lost or important medical records may be destroyed after a time.

• Continuity of care will be better since you will be able to take a copy of your medical records with you to a new doctor or when you travel or move, or in the event of an emergency.

Most doctors and hospitals will give you a copy of your medical records when asked. However, if your request is refused, you should examine your state’s law to determine your rights. Most states provide the patient a right of access to medical records held by doctors and/or hospitals. Federal regulations govern the records of long-term-care facilities that accept Medicare or Medicaid payments. Federal employees have a right to obtain medical records maintained by the government. If there is no statute, common law may give you a right to a copy of your records.

Don’t be surprised if you are charged a fee for copying. Some states have a statutory maximum charge per page ranging from $.10 to $1.

When you review your record, make notes of your questions. The next time you see your doctor, bring your questions. If your doctor is too busy, perhaps the doctor’s nurse will have the answers. If not, she can find out when the doctor is not busy seeing patients.

An excellent source of information about state medical records laws, as well as explanations of the entries you are likely to find in your records, is Medical Records—Getting Yours, a publication of Ralph Nader’s Public Citizens Health Research Group (available for $10 by calling 202-588-1000 or writing Public Citizen, 2000 P Street NW, Suite 605, Washington, DC 20036).

If you have been denied access to your records, you may want to ask a patients’ rights advocate in your area for help.

Tip. Rather than rely on the legal process, if your request for your records is refused, consider asking a friendly doctor to request them. The rules of professional conduct of the American Medical Association obligate a doctor to transfer records to another doctor when the patient requests it.