When you are living with a serious illness, your relationship with your doctor becomes especially important. You should feel secure in that relationship, and you should know what you can expect. If you have many doctors, then you should identify one as your primary doctor. This is the doctor you call for emergencies, medication changes, new or changing symptoms, and even to clarify what other doctors may have told you. This doctor may be any of the doctors that you have. If you expect one of your specialists to fill this role, you should explicitly ask the doctor if he will do so. Many specialists expect to limit themselves to advising patients, family practitioners, general practitioners, and internists.
Other specialists, however, are prepared to be the primary doctor who will see you through the frequent changes, complications, and treatments of a chronic, severe disease. Sometimes a nurse, nurse practitioner, or physician 's assistant will be your "primary doctor." Throughout this book, and throughout health care, these professionals function very much like doctors and we'll use the term "doctor" for all.
Often expectations are personal. Only you can decide if a doctor has a sufficiently pleasing personality, comforting bedside manner, and respect for you and your time to establish or continue your relationship. In fact, writing down what characteristics are important to you can help you choose a doctor. But other expectations are universal; your doctor should be competent, dependable, and have a professional demeanor. Your doctor should also have reliable coverage "after hours."
Competence can be judged in several ways. You can ask if the doctor is "board-certified" in his specialty or look for him in medical specialty directories found in many public libraries. Doctors who are "board certified" have had additional training and passed an examination in their fields of medicine. You can ask how much experience your doctor has in caring for patients who lived and died with your disease. And you can ask how those deaths went. In addition, you should consider your previous experiences with the doctor, as well as opinions of friends or other doctors who referred you to him.
Dependability includes many different things. Your phone calls should be returned in a timely fashion by someone who can reasonably be expected to answer your questions. Dependability also means that getting information about yourself and your situation should be easy. Test results should be relayed to you promptly and in a professional manner. That may mean a phone call or mailed note, but not an eternal wait. Ask your doctor how you can expect to get this kind of information and how long it usually takes for different tests to be completed. If you are told, "We only call you if the results are abnormal," then you may be in for days of uncertainty that fades but doesn't completely disappear. If the "no news is good news " approach does not satisfy you, ask how arrangements can be made to notify you when results become available. Or, ask when you should call for the results, or give them a self-addressed envelope to provide a reminder.
Your doctor should be professional in all aspects of your relationship. That doesn't preclude a genuine friendship. It does mean that your medical information and personal concerns are kept confidential by the doctor and staff. It means that your care is not shaped by the doctor's self-interest. Your doctor should be able to handle emergencies at any hour and should be comfortable working in various settings: hospital, nursing home, home, and emergency room. Your doctor should also accommodate reasonable requests to stay in touch with your family. For example, a particular family member could be called before the patient leaves the office or after any examination.
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