When I was growing up, doctors behaved very differently from the way they do today. For one thing, they went out of their way to suppress information about alternative diagnoses, risks of treatment, and prognoses. They did this because they felt that part of their job was to shoulder the anxiety related to these sometimes horrible possibilities and conceal them from the patient and patient's family. When a fatal outcome was likely, telling the patient was taboo.
This approach wasn't all bad. "Trust me, I'm a doctor" sounded better then than it does now; patients didn't expect to be told everything about their condition.
What would your response be to a doctor who said no more than: "Trust me"? Those who are older may be more inclined to accept this statement, but most of us would press for more information. Rather than asking patients to trust me blindly, I answer questions as best I can. If I don't have an answer, I tell patients quite frankly, then do my best to find out. Common sense tells us that no one doctor has all of the answers, and a doctor may even have some embarrassing gaps in his or her knowledge. However, in my experience, acknowledging that I don't have immediate and definitive answers usually increases a patient's confidence in my abilities. Where there are gaps of information, I can look up the correct answers and respond later. With modern computerized databases and search programs, it is easy for me to get abstracts of the latest published information on just about any medical topic (or combination of topics) within minutes. Reviewing these abstracts and summarizing them for a patient is relatively straightforward, except when the information is contradictory. But if contradictory findings do turn up, that's what I tell my patient. If doctors had clear-cut answers to every question, then there would be no need for further medical research.
There still are wide differences among physicians in the extent to which they try to explain various aspects of each patient's illness. Some continue to believe that patients really don't need to know such details. Others think their patients won't understand them. This attitude has contributed to the demand for articles in general consumer magazines and on health Web sites and in books like this one designed to explain treatment of various diseases in terms that patients can understand.
Some physicians are still made uneasy by patients who read up on their disease and/or proposed treatments and come to the office with a lot of difficult questions, or worse yet, with specific demands, for example, for specific drugs they have seen advertised. Patients want to trust their doctors, and to leave the anxiety to the doctor. But patients need to know that all of the possibilities have been taken into consideration, that their doctor is completely informed, and most of all, that he or she is really concerned about their welfare. Explain your motives and concerns to your doctor. It is hoped that your doctor will be willing to assist you in furthering your knowledge once she realizes you're not second-guessing her.
One patient of mine carried the research of his disease to extremes. He was very keen on second and third opinions. He has seen most nephrologists in the area and some in neighboring areas, and still spends over $100,000 annually in doctor's bills. Typically, he will ask Dr. B and Dr. C to comment on the recommendations of Dr. A, and then he makes his own decision as to what to do and which doctor to entrust his care to.
This sort of "doctor shopping" is hard for physicians to tolerate. It is more than asking for a second opinion. Getting a second opinion (which is reimbursed by many insurers) doesn't imply that a second opinion that sounds better will lead to a change of doctors. No physician wants to spend time justifying his or her diagnosis, prognosis, or recommendations in the face of contrary opinions from another physician, knowing that the patient may switch doctors if he or she doesn't like the answers.
I do want you to be a well-informed patient and to take the knowledge that you learn in this book to your doctor. Take the Assessment of Care Quiz below, and find out whether you are receiving the best care possible for your kidney failure. An outline of the treatment options that might help your disease is presented after the quiz. If your doctor is unresponsive to these options, discuss with him or her why that may be. If you do not feel comfortable with the answers, consider changing doctors.
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