Written by Melissa Palmer, MD
Melissa Palmer, MD is the author of " Dr. Melissa Palmer's Guide of Hepatitis and Liver Disease". (Published 2004. Penguin Putnam).
There are many different kinds of doctors who evaluate and treat people with liver disorders. First, there is the family physician or internist. These doctors are also referred to as primary care physicians (PCPs). They are often the first ones to discover that something is wrong with the liver. From there, the patient is customarily referred to a specialist—either a gastroenterologist, hepatologist, or infectious disease specialist—for further evaluation and treatment. This specialist may be in a practice located at an academic institution or in a private practice located in a community setting. The difference between the various types of doctors a patient with liver disease encounters may sometimes be confusing. Hopefully, this section will clarify these differences in order to eliminate any future confusion.
The Medical Doctor (MD)
Medical Doctors (MDs) are physicians who have successfully completed four years of medical school training. After graduating from medical school, these doctors must complete a minimum of one additional year of training in a hospital in what is known as an internship. They must then pass a state-licensing exam in order to practice medicine in that state. After obtaining their license, they have the right to practice medicine in that state. However, many doctors choose to continue their training in a hospital by undergoing a residency—typically an additional two years.
After completing their residency, these doctors must take an exam in order to become board certified in a specialty, such as family medicine or internal medicine. Doctors may practice medicine whether or not they pass this exam. Doctors who become family doctors or internists have general knowledge in all areas of medicine including the heart, lungs, kidneys, stomach, intestines, and liver. At this time, a doctor may decide to undergo additional specialty training, known as a fellowship, in a specific area of internal medicine, such as gastroenterology, hepatology, or infectious diseases, in order to become an expert in these areas.
The Doctor of Osteopathy (DO)
Doctors of osteopathy (DOs) are commonly referred to as osteopaths. These are doctors who graduated from a four-year osteopathic school. They must also complete a one-year internship in a hospital in order to be eligible to obtain a license to practice medicine. Osteopaths can also choose to undergo an additional two-year residency, and may thereafter undergo specialty training in a specific area of medicine.
Osteopaths tend to focus on treating “the body as a whole,” particularly on the body’s ability to heal itself. Osteopaths typically center their treatment on the musculoskeletal system, the muscles and bones, often using techniques such as bone manipulation and a form of massage.
The Family Physician
A family physician is a doctor—either an MD or a DO—who has been trained to prevent, diagnose, and treat medical conditions in people of all ages. The family physician takes care of the general health of the patient and his entire family. Their training is not limited to internal medicine, but includes some training in psychiatry, obstetrics, gynecology, and surgery. These are the “Marcus Welby” doctors, seemingly able to handle almost any general problem.
There is a separate board certification examination specifically for family practitioners. This is known as the family practice boards. Specializing in family practice medicine requires an additional three years’ training beyond medical school. The amount of exposure to, and degree of expertise in liver disease varies among family practitioners. However, family physicians have not undergone additional specialized training in liver disease.
An internist is a doctor—an MD or a DO—who is trained to prevent, diagnose, and treat medical conditions in adolescents and adults, including the elderly. Internists have received some basic training in subspecialty areas of internal medicine, including gastroenterology, hepatology, and infectious diseases. Internists are trained to treat both straightforward and complex problems of the internal organs. They are also trained in emergency medicine and critical care medicine. There is a separate board certification examination specifically for internists. It is known as the internal medicine boards. Specializing in internal medicine requires an additional three years’ training beyond medical school.
The amount of exposure to, and degree of expertise in liver disease varies among internists. Internists have the option of continuing their training in a subspecialty of internal medicine. This requires applying for, and being accepted into, a fellowship in the subspecialty of their choice. gastroenterology, hepatology, and infectious diseases are among the many subspecialties of internal medicine.
A gastroenterologist is an internist who has completed specialty training in the treatment of digestive disorders. Digestive disorders include disorders of the esophagus, stomach, small and large intestines, pancreas, gallbladder, and liver. In order to become board certified in gastroenterology, the doctor must first become board certified in internal medicine. In order to become eligible to even take the examination for board certification in gastroenterology, a gastrointestinal (GI) fellowship lasting an additional two to three years beyond an internal medicine residency must be completed.
During the course of their two to three years of training in gastroenterology, some gastroenterologists have little exposure to patients with liver disease. On the other hand, some gastroenterologists have a great deal of exposure to patients with liver disease during the course of their gastroenterology specialty training. Thus, the level of experience and expertise among gastroenterologists in diagnosing and treating liver disease varies greatly. It is important for the patient to determine the gastroenterologist’s level of expertise in liver disease prior to establishing a long-term medical relationship with this type of doctor.
A hepatologist is the most experienced and qualified type of doctor to treat people with liver disease. Since there is currently no separate board certification examination in the field of hepatology, there is no official definition of a hepatologist. However, there are specialized training programs for doctors who are focused solely on liver disease. These are known as hepatology fellowships and typically last from one to two years. Over the course of a hepatology fellowship, a doctor receives comprehensive training in the diagnosis and treatment of liver disease. This specialty training typically includes extensive exposure to all liver diseases, including those that are rare and infrequently seen. This intense training in liver disease is rarely matched in a gastroenterology fellowship.
A physician who successfully completes a hepatology fellowship is considered a hepatologist. Most hepatologists, although not all, are also gastroenterologists. These doctors have successfully completed both a hepatology and a gastroenterology fellowship. Occasionally, gastroenterologists who have not completed a fellowship in hepatology nonetheless focus their medical practice primarily on the diagnosis and treatment of people with liver disease. While these physicians do not have a separate diploma in the field of liver disease, they may also be considered hepatologists.
For many reasons, it is to the patient’s advantage to choose a hepatologist to treat his liver disease. The patient can be virtually assured that the hepatologist will have substantial experience in the diagnosis and treatment of the full range of liver diseases. Furthermore, hepatologists are likely to be the first to learn about the most up-to-date therapies—both FDA-approved and experimental—and to incorporate them into their practices. However, whether someone chooses to see a gastroenterologist or a hepatologist, it is important to find a doctor who is willing to work with him as an equal partner in the healing process.
Infectious Disease Specialists
An infectious disease specialist is an internist who has completed a specialty fellowship in infectious diseases of all types. Many infectious disease specialists treat people with liver disease caused by infectious - such as hepatitis B and C (both of which are caused by viruses). During the course of their two years of training in infectious diseases, some infectious disease specialists have little exposure to patients with viral hepatitis. On the other hand, some infectious disease specialists receive a great deal of exposure to patients with viral hepatitis during the course of their specialty training. Thus, the level of expertise among infectious disease specialists in diagnosing and treating viral hepatitis varies greatly. It is important for the patient to determine the infectious disease specialist’s level of expertise in treating hepatitis B or C prior to establishing a long-term medical relationship with this type of doctor. It should be stressed that infectious disease doctors have no special expertise treating liver diseases that are not caused by infections – such as alcoholic liver disease or autoimmune hepatitis.
Academic Physicians Versus Private Practitioners
People searching for a doctor should be aware of the differences between academic physicians and private practitioners. Each type of doctor has pros and cons that must be carefully weighed by the patient as part of the process of choosing a physician.
The Academic Physician
An academic physician is a doctor who has accepted a faculty position on staff at a hospital. Often, though not always, the hospital will be associated with a medical school. These doctors spend a portion of their time teaching medical students and physicians-in-training (interns, residents, and fellows) about their specialty—in this case hepatology. Also, some academic physicians spend a considerable percentage of their time conducting research, as opposed to treating patients. Although some of this research is performed in a laboratory, some is within the context of clinical trials involving patients. (See Chapter 11 of my book for a discussion of clinical trials.)
These physicians are usually, but not always, board certified in their specialty, and some have contributed significantly to the advancement of the medical profession in their specialty. However, this is not always the case. Academic physicians carry a title such as assistant professor, associate professor, or professor. This title is based on a number of factors, including, but not limited to, how long they have been practicing in their specialty, their leadership skills, their teaching skills and the contributions made by them in their specialty. No one should ever assume that the qualifications of a given academic physician are superior to those of a given private practitioner merely based on the academic physician’s title or employment by a hospital. This may even hold true of the department chairman.
Academic physicians are generally expected to stay abreast of the newest developments in their field. Such a physician may have initiated or prompted the investigation of a new drug or may have played a significant role in the development of a new medical procedure. Frequently, but not always, academic physicians are involved in conducting investigational trials on the most promising experimental drugs. However, the requirements of entering a study at an academic center may be very rigid and typically involve a risk that the patient will be given a placebo (dummy drug).
Doctors at an academic institution usually allot some time to patient care. However, since these physicians must also teach, the patient will sometimes be evaluated and treated primarily by a doctor-in-training rather than the more experienced faculty member he was expecting. Although these doctor trainees must discuss the patient with the academic physician, the patient will have no assurance of ever meeting with the academic physician, sometimes the patient will only briefly meet with the academic doctor whose credentials prompted his visit in the first place. This may occur on the initial consultation and/or on subsequent visits. Thus, the patient may experience, but cannot count on a close personal relationship with this doctor. Therefore, it is important for a patient making an appointment with a physician who is on staff at a hospital to inquire whether he will be seeing the doctor in a clinic setting or in some type of private office. And, whether he will be seeing the doctor he is requesting the appointment with, opposed to his associates or staff, both for the initial consultation and follow-up visits.
Finally, since academic physicians are typically based within a hospital, their office hours are often limited. Rarely, if ever, will these physicians make themselves available for routine appointments after 5:00 pm, before 8:00 am, or on weekends. And since these doctors have so many other duties in the hospital, such as meetings, teaching, and lecturing, typically only two or three days at most will be devoted to seeing patients, and then only for a limited number of hours. The result of such limited hours is that typically the patient will only be able to book an appointment several weeks, if not months, in advance. Furthermore, hospital-based physicians are typically away from their practice many weeks out of the year attending meetings and lecturing.
The Private Practitioner
A private practitioner is a physician who typically focuses his career on patient care. Usually, but not always, private practitioners take care of people who are admitted to local hospitals in their communities. That is, these private practitioners have either admitting or consulting privileges at one or more local hospitals. Some private practitioners may also be affiliated with an academic institution, where they also treat patients and occasionally teach. And, some private practitioners do not see patients in a hospital setting at all but only in their office for consultations.
Private practitioner physicians may be in solo practice, wherein only one doctor is running the practice; in a partnership, wherein two or more physicians share the responsibilities of the practice; or in a group practice, wherein several doctors are affiliated across an array of different medical specialties. As compared with at an academic setting within a large hospital, a personal relationship with the physician is more likely to develop in a private-practice setting. (Although this is not always the case). If the physician is not a solo practitioner, the patient should inquire whether he will be seen by the same physician on each visit. Similarly, all patients in the process of choosing a physician should inquire whether they will be seen by an actual doctor, as opposed to a nurse or physician’s assistant (P.A.) on each visit.
Private practitioners typically have much longer and more flexible office hours than physicians who are hospital staff members. Thus, early morning, as well as evening, and weekend hours are often available. Of course, the actual hours of availability vary considerably among private practitioners. Also, as compared with hospital-based physicians, private practitioners are less likely to be away from their offices for extended periods of time. Thus, it is possible to obtain an appointment with a highly qualified hepatologist in private practice much more quickly (usually within a few weeks) than with an academic hepatologist of similar stature.
A person doesn’t necessarily have to be treated at an academic institution in order to enroll in a clinical trial of an experimental drug. Some private practitioners conduct clinical studies as part of their practice, in the same manner as would an academic physician. However, this is not especially common and generally applies only to the most knowledgeable privately practicing hepatologists. This is an important area to inquire about prior to making an appointment with the doctor. Typically, studies run in a private practitioner’s office are less rigid in terms of criteria for including or excluding subjects and are less likely to involve the use of a placebo as compared with those conducted at an academic institution. It is important to thoroughly research the credentials of the physician conducting the study, whether the study is conducted in a private practice setting or at an academic institution. This will be discussed in further detail in Chapter 11.
Finally, many people with liver disease incorrectly assume that, if they are treated by an academic physician who is affiliated with a transplant center, this will automatically increase their chances of obtaining a new liver, should one be required. This is a total misconception, as all people are subject to identical rules, regulations, and criteria for liver transplantation—regardless of whether the patient is being treated within an academic or private practice setting. (See chapter xx for more about liver transplantation).
WHAT TO LOOK FOR IN A SPECIALIST
Now that you are familiar with the different kinds of doctors, the next step is to find out about the specialist you have chosen and how he runs his office.
So, what questions should be asked to determine the doctors experience treating people with liver disease?
Determining The Doctor’s Experience With Liver Disease
It is essential to find a doctor who has a significant amount of experience in taking care of people who have liver disease. Information about hepatitis and liver disease rapidly changes. Thus, unless the doctor deals with these diseases multiple times a day it is unlikely that he will be up-to date with information. Even most textbooks are two to three years out-of-date by the time they are published. In this regard, the patient should pose some basic questions to the doctor. See the sample questions that follow. Also, there is no guarantee that the doctor will be totally forthcoming about his level of experience. It’s very important to remember that just because the doctor’s business card or door sign says liver disease, it shouldn’t be assumed that his practice focuses on liver disease. The printer and the sign maker do not verify the doctor’s qualifications and credentials.
- Did your specialty training include a liver fellowship?
As discussed above, a doctor may have trained in the general specialty of gastroenterology, which includes some training in liver disease, or the doctor may have additional training specifically in liver disease. Doctors typically, but not always, hang their diplomas that they are awarded at the completion of their training on the wall. Therefore, simply looking at the doctor’s wall to see if there are two separate diplomas – one for liver disease and the other for gastroenterology will answer this question in many instances.
• ‑Approximately what percentage of your practice is devoted to liver disease, and about how many liver disease patients are you presently treating?
Some doctors have a very large practice but treat very few individuals with liver disease. Other doctors have a relatively small practice, but it may be one that is devoted primarily to taking care of people with liver disease. And some doctors—despite being well known in the field of hepatology—have not actually treated many people with liver disease. These doctors, who often work at large, well-respected hospitals, have devoted their careers to liver disease research rather than patient care.
• Are you involved in liver disease research?
It is advisable to ask the doctor whether he has participated in or is currently conducting research devoted to liver disease. For example, a doctor may be involved in experimental trials to evaluate a promising new form of diet or drug therapy for liver disease or may be involved in evaluating a new method of diagnosing liver disease. A doctor involved in such investigations will afford the patient the opportunity not only to learn firsthand about the most up-to-date therapies, but also may enable the patient to begin using a promising form of therapy before it becomes readily available to the public.
• Have you written any articles on liver disease? Have you written or contributed to any books on liver disease?
A patient should feel free to inquire about the doctor’s medical research experience and also about whether the doctor has authored any publications on liver disease. Many of the most knowledgeable hepatologists have published articles in any well-respected peer-review medical publications, such as Hepatology, Gastro-enterology, or Seminars in Liver Disease. This can be independently checked by accessing medline on the Internet (see Appendix for website address) or by asking for a copy of the article. Doctors are usually more than happy to comply with such a request. Remember, however, that articles appearing in medical publications are written for other physicians and other members of the medical community. These articles will, therefore, contain technical medical terminology. Some doctors have written articles on liver disease for the general public. These may appear in local newspapers, general circulation magazines, specialty publications -such as “Hepatitis” magazine, or publications such as the American Liver Foundation newsletters and pamphlets.
Some of the doctors who are the most dedicated to liver disease have demonstrated their dedication by writing book chapters, book forwards, or entire books on the subject of liver disease – either for the medical or lay community. The patient should feel free to inquire about any of these publications.
• What is your knowledgeability regarding alternatives to conventional medical therapies?
While a liver specialist is primarily involved in prescribing mainstream medical treatments, he should also be knowledgeable about the available alternatives to conventional medical therapy. Extensive evaluation of any alternative treatment is essential before its effectiveness can be assessed. How familiar is the doctor with the alternative therapy in question? How is the doctor basing his recommendations as to the alternative in question? How many of the doctor’s patients tried this alternative treatment, and what were the results?
If a doctor is going to treat your liver disease, it is important that he be knowledgeable as to the most popular alternative treatments for liver disease. While the doctor may not necessarily recommend their usage, it is important that he be conversant with their pros and cons.
- How many people with liver disease have you treated?
It is important to know how experienced the doctor is in treating patients with liver disease. However, while you may be tempted to ask the doctor his age or how long he has been in practice, these questions are of questionable usefulness. Though most people would prefer not to be treated by a doctor who has just completed specialty training, the actual amount of years in practice may not be a reliable indicator of the doctor’s experience with liver disease. For example, a doctor who has been in practice for thirty years may treat only ten individuals with liver disease each week. While another doctor, who may have been in practice for ten years, treats thirty people with liver disease each week. Who is more qualified? The answer is they both may be sufficiently qualified. The bottom line is that the age of the physician and the actual number of years he has been in practice are not reliable criteria by which to judge a doctor’s level of experience.
THE DOCTOR’S OFFICE AND STAFF
In addition to the qualifications of the doctor, there are several important factors which a prospective patient should consider when choosing a liver specialist. It is important to search for a practice in which the doctor has made many amends to make the practice convenient, available and private. This section discusses some additional issues to consider when finding a doctor to treat your liver disease.
Often, the patient can get a baseline impression of the doctor by observing how the office is run. Take note of whether the office staff seems to be knowledgeable about liver disease. A person telephoning the office may not always be able to contact the doctor immediately. Does the doctor have a nurse, medical assistant, or office manager who can promptly and accurately answer questions in the doctor’s absence?
What is the availability of the doctor and the doctor’s staff? How many days a week is the office open? Are the doctor’s hours flexible? Are evening and weekend appointments available? How long must the patient wait to get an appointment? A doctor may not have an appointment available the same day a patient calls, but no matter how busy the doctor’s practice is (even in the busiest of practices), a patient should be able to schedule an appointment within 3 or 4 weeks—at most.
How long does the patient have to wait once in the doctor’s office? If on every visit, the patient is left waiting for more than two hours in the waiting room, then there is something wrong with the doctor’s method of scheduling. But a long wait on occasion should not be cause for concern. Emergencies sometimes arise and can result in delays.
It is important to be treated by a medical practice that respects your privacy. In fact, it’s the law. Is the nurse’s and office reception area enclosed with a window or door, or is it open thereby allowing patients’ names and personal information to be overheard? Do the doctor or his staff discuss other patients’ information (i.e. on the phone) while in your presence? Can you rely on the doctor and his staff to take the necessary steps to protect your medical information? Is the doctor’s practice in compliance with the Health Insurance Portability and Accountability Act of 1996 (HIPAA)?
What is HIPAA?
HIPAA was developed by the Department of Health and Human Services (HHS). This law applies uniformly to all areas of the United States effective as of April 15, 2003. These laws are a national standard. No doctor’s office or hospital in any area of the country is exempt from this law. The HIPAA law is designed to protect the security and confidentiality of patients’ protected health information (PHI) whether it is on paper, in computers or communicated orally. PHI is any information that the doctor’s office possesses about the patient that identifies the patient and relates to their past, current and future physical and/or mental health condition and the health care products and services that have been provided. Under this law your medical records and conversations with the doctor and doctor’s staff are not readily available to anyone without your written authorization.
All doctors’ offices must provide written notice to their patients describing their rights under this law. Patients typically will be asked to sign, initial or otherwise acknowledge that they received this notice. Furthermore, a notice must also be posted in the doctors’ office describing the basic features of this law. An office which does not display a HIPAA notice is in violation of their patients’ privacy rights and is subject to both civil and criminal penalties. The same applies to an office that does not provide you with a written notice describing your rights under HIPAA.
People with liver disease generally need frequent assessment of their blood work. Therefore, it is important to find out whether blood will be drawn at the doctor’s office or whether the patient will be sent to a laboratory to have blood drawn. Obviously, it is a great convenience to have blood drawn in the doctor’s office at the time of the visit.
Often the patient with liver disease will need evaluation of his digestive system for a variety of reasons. The evaluation will typically include an upper endoscopy and a colonoscopy. An upper endoscopy is a flexible tube with a light at the end and is performed to evaluate the esophagus for possible esophageal varices, and the stomach for possible ulcers or infection. A colonoscopy is a flexible tube with a light at the end of it performed to evaluate the lower intestines (colon), for polyps or rectal bleeding, for example. Some doctors perform these tests in the comfort, privacy, and convenience of their office. Other doctors perform these tests at the local hospital, which is invariably more time consuming for the patient, as well as less convenient.
Who Will The Patient Actually Be Seeing?
It is crucial for the patient to find out whether he will be seeing the doctor on the initial, as well as subsequent visits, or a nurse, physician’s assistant (P.A.), or medical assistant (M.A.). You want to know who is actually going to be treating you. For many doctors, their standard procedure is to only conduct the initial evaluation of the patient. All subsequent visits, phone calls or other contacts with the patient are handled by a doctor’s representative – i.e. nurse, medical assistant, or physician assistant. These doctors’ helpers are commonly referred to as “physician extenders”. In such practices, the doctor is directly involved with the patient’s care only in the event of a serious complication. Baring a serious complication, the management of the patient is mostly left in the hands of the physician extender. However, in many practices, every patient is managed personally by the doctor. In such practices, the doctor himself will perform all examinations of the patient, (both initial and subsequent), will personally evaluate the patient’s response to therapy, and will personally make all treatment decisions - both major and minor. In this type of practice, the physician that you have chosen - after researching his level of expertise and experience in liver disease, will be the individual who is treating you.
Finally, find out how many doctors there are in the practice and whether you will be seeing the same doctor at each visit. It is in the best interest of the patient to establish a relationship with one doctor. This way, the doctor’s familiarity with the patient’s medical history and special needs will be maximized. This is likely to lead to the highest rate of success in treatment of the patient’s liver disease.
THE WAYS DOCTORS HELP PATIENTS OUTSIDE THEIR PRACTICES
Treating each person individually is the standard way a doctor helps patients get better. But there are additional ways that a doctor can help people—ways in which he can reach out to large groups of people with liver disease and to their loved ones all at once.
If a doctor spends his spare time involved in activities relating to liver disease, such as writing articles, lecturing, making radio or television appearances, creating instructional videos, or running a website devoted to liver disease, it’s pretty obvious that this doctor is dedicating his career, as well as his free time and spare energy, to helping people with liver disease. Patients should not hesitate to ask their doctors if they are involved in any of these worthy activities.
A doctor who writes articles on liver disease can reach a large number of people. The article can be contributed to a local newspaper, a health-related magazine, or the newsletter or brochure of a support group or a nonprofit organization devoted to liver disease, such as the American Liver Foundation (ALF) or Hepatitis Foundation International (HFI). Similarly, many pharmaceutical companies involved in the treatment of liver disease have literature concerning the disease and its treatment. The patient should find out if the doctor has contributed to any of these publications. Doctors who have had articles published will often have copies available at their offices that the patient can take home to read.
Does the doctor give lectures on liver disease, either within the local community or nationally? Lectures are regularly sponsored by nonprofit organizations such as ALF or HFI. The general public is normally invited to attend these lectures, either free of charge or for a very minimal fee. A knowledgeable doctor should be able to inform the patient of the date and location of scheduled lectures in the community or nearby areas. The patient should find out if the doctor is invited to speak at these lectures. A doctor who is involved in lecturing to the public will gladly tell the patient when the next lecture is scheduled, so that the patient may attend if he wishes. Or the doctor will describe to the patient the most recent lecture that he has given.
The media is a means by which the doctor can reach out to many people with liver disease and their loved ones all at the same time. By communicating to the public through the media, the doctor is able to spread information about liver disease to thousands, if not millions, of people. Health topics are frequently discussed on news programs and talk shows. Often, local or cable television stations devote entire programs to liver disease, and radio programs often have short segments related to health topics. The patient should find out if the doctor has appeared on television or radio shows concerning liver disease, or if the doctor has participated in the production of any videotapes devoted to liver disease. A doctor who has appeared on television, radio, or videotape will probably be able to provide the patient with a taped copy of the show, or at the very least, provide information about how to obtain a copy.
There are numerous liver-related websites on the Internet. The patient should find out if the doctor is involved in running one of these websites. The doctor should be able to direct the patient to some informative, accurate Internet websites related to liver disease. This topic will be discussed in more detail later in this chapter on page xx.
Associations and Foundations
Methods for the diagnosis and treatment of liver disease change rapidly on an ongoing basis. It is important to be treated by a doctor who is familiar with the most up-to-date developments. There are many professional organizations that keep doctors abreast of the most recent information on liver disease. The most prominent of these organizations in the field of liver disease is the American Association for the Study of Liver Disease (AASLD). A doctor who has been elected to membership in the AASLD is most likely to be actively involved in liver disease. The AASLD is an association of physicians and scientists who are dedicated to the advancement and application of knowledge of liver disease.
There are also numerous lay (non-professional) organizations that are dedicated to increasing the awareness of liver disease. Perhaps the best-known of these is the American Liver Foundation (ALF) is a voluntary nonprofit organization whose membership consists of doctors, patients, and any other individuals interested in liver disease. ALF’s major goals include educating the public about liver disease and fostering the prevention and treatment of liver disease. A doctor may be involved with ALF to varying degrees, ranging from being a member to running a support group to lecturing to the public on a topic pertaining to liver disease. Doctors who have demonstrated exceptional dedication to the cause of helping individuals with liver disease are often invited to serve as a board member of ALF, either at the national or local level. A patient can contact ALF to inquire about a doctor’s level of activity in this organization.
INSURANCE AND HMO PLANS
A full discussion of insurance plans, including HMOs, POSs and PPOs, is beyond the scope of this book. However, the patient should be aware of one very important point concerning insurance plans, which is described in the following scenario: After Tom’s exhausting search, he finally found a specialist that he wanted to consult with. However, when he checked in his insurance book, to his great disappointment, the specialist’s name was nowhere to be found! Now what?
All patients should be aware that most insurance plans will pay for a visit to a doctor who is not included in their plan, if—and this is an important if—the doctor offers special or unique services that no other doctor in the plan offers. For example, some liver specialists offer a wealth of experience treating people with liver disease, which greatly exceeds that of any other doctors who are currently listed on the plan, or they are offering treatment options that are not available through any of the other doctors on the plan. In these circumstances, an appeal letter or even a phone call to the appropriate insurance company representative explaining the dilemma often results in the patient being granted coverage for a consultation with the desired specialist. Also, the patient may want to ask the doctor personally if he would consider joining his health plan.
LIVER DISEASE SPECIALISTS AND THE INTERNET
The Internet may be considered a double-edged sword when it comes to liver disease. It is an ocean of both information and misinformation. Surf with caution. The number of Internet websites continues to grow at an explosive rate. Despite the relative newness of the Internet, there are already over one hundred Internet websites devoted to liver disease and hepatitis. It can be difficult for the layperson to determine which information is correct and which information is not. It is most important for the patient using the Internet to determine who is sponsoring the website.
Is a pharmaceutical company maintaining the website? For example, Schering-Plough, Roche, and Intermune, three major drug companies that manufacture and distribute pharmaceuticals used in the prevention or treatment of liver disease all maintain Internet websites. Each of these websites contains useful information, but, keep in mind that these companies also are promoting their product. Is it a well-respected hepatologist who maintains the website? For example, I maintain a regularly updated Internet website, and there are a number of other excellent hepatologists who also maintain websites devoted to liver disease. Or, is it a health-care professional who is not a hepatologist? Does a well-established not-for-profit organization maintain the website? For example, ALF and HFI, in addition to many other groups maintain helpful websites. Is it a knowledgeable patient eager to help others who maintains the site? Or is it a not-so-knowledgeable patient who is giving false and possibly dangerous information? Be careful. (See Appendix for some helpful website addresses.)
Some websites provide referrals to doctors who purportedly specialize in liver disease. Unfortunately, it is often impossible to ascertain what criteria were used in selecting the referred doctors. Some sites merely require a doctor to pay a fee in order to be listed. While it may be difficult to obtain accurate information from searching the Internet, one generality may be relied on: If the doctor has a website devoted to liver disease, it is likely his practice is focused on taking care of people with liver disease.
CONSULTING WITH THE SPECIALIST
Now that the patient has located a specialist, there are a few tips to follow, which will help make the appointment as smooth and efficient as possible for both the patient and the doctor. It is normal to be nervous about seeing a specialist. So much new and crucial information will be provided to the patient during this visit. It is to be expected that after the initial consultation is over, the patient will not recall a significant amount of what the doctor has said. For this reason, the patient should try to have a relative or close friend along for the consultation. Prior to the visit, the patient should make a list of all of the questions that he wants answered during this visit. The patient should bring this list to the consultation and should not leave the doctor’s office until every question has been satisfactorily answered. It’s perfectly okay to take short notes while the doctor is talking and to check off each question after the doctor has answered it. If necessary, the patient should request that the doctor write down unfamiliar technical medical terms used during the conversation.
The patient can make the initial consultation more productive for the specialist by bringing all prior records from other doctors to the visit. This will better enable the doctor to promptly and accurately assess the patient’s condition on the initial visit. It is especially important to bring the doctor copies of all previously performed blood work, imaging studies, and liver biopsy reports or slides. Doing so will not only assist the doctor, but it can sometimes eliminate the necessity of repeating the tests and/or biopsy.
Remember, all prior records, reports, and slides legally belong to the patient. These records should never be difficult for the patient to obtain. However, most doctors’ offices, hospitals, and medical facilities require a written request authorizing the release of the records to another doctor or hospital. Often there is a fee. Be aware that the maximum fee that by law can be charged for medical records is seventy-five cents per page.
Finally, the patient should always bring the doctor a list of all medications, including over-the-counter medications, vitamins, dietary supplements, and/or herbal remedies, that he is taking. The more comprehensive the information the patient provides, the more accurate the specialist’s advice will be.
FINDING SECOND OPINIONS
If a patient is not comfortable with the advice he receives from a specialist, it is advisable to seek another opinion. Always make sure that a second opinion is provided by a doctor whose knowledge of liver disease is superior to, or at least equal to, that of the first specialist. However, patients should keep multiple opinions in perspective. Under no circumstances should patients ever make it their objective to shop around for opinions until they hear the diagnosis or prognosis that they are looking for. A game plan of this nature could only cause a serious illness to be left neglected, untreated, or treated inappropriately. It is natural for anyone to hope to hear that there is nothing wrong and that a liver biopsy and treatment aren’t necessary. In some cases, these statements may in fact be accurate; however, if the patient has seen two or three well-respected liver specialists, all of whom concur that something is wrong, the patient must accept that he has a chronic illness that may require treatment.