In the previous issue of the Resource News, I talked about communication as a means of developing a better relationship with your physician and getting your needs met. Good communication with your physician is just part of a good working relationship. It is also important to understand the organization of the medical care delivery system with which you must interact. This is especially important in a university-teaching medical center such as UCLA.
Receiving Care in a University-Teaching Hospital
Seeing a doctor in a university-teaching hospital has advantages and disadvantages. One major advantage is that these physicians tend to be the most current with research literature and the latest developments. When you have a cold, this does not seem so important, but when you are dealing with cancer, it can be extremely beneficial.
University-teaching hospitals also tend to be affiliated with the latest research protocols. If you need an alternative treatment, you are more likely to be connected to the most appropriate network. Since a university generally is diverse, you have access to many other specialists who are leaders in their fields. This access promotes consultations on difficult problems which can lead to earlier diagnoses and treatments.
A university-teaching hospital also presents some obstacles that patients may not experience in a private-practice setting. For example, the teaching hospital is much larger in size so that patients may have to cover a lot of territory just to accomplish simple tasks. More and more, university hospitals are making efforts to minimize this decentralization of services. Sometimes, the paperwork maze can be bigger and more diffuse in such a big environment, so billings issues may be harder to resolve.
The size of the university-teaching hospital also makes it less personal. Doctors see patients in one area and have their offices in another. You lose that personal sense of seeing your doctor’s diplomas on the wall and pictures of his or her significant others. This can depersonalize your relationship with your physician. Since you come into contact with many different people, it can be harder to feel cared about and “at home.”
Sometimes in university-teaching hospitals your doctor is not the primary physician on call. These responsibilities are handled by residents or fellows. A resident is a physician-in-training who has earned an M.D. and now is in the process of receiving additional training in his or her specialty. Residents typically have three years of training, but some specialties require more. A third-year resident has more responsibilities than a first-year resident. Fellows have completed their residency and are receiving additional training in their specialty. They have decided to become highly specialized and have considerable patient responsibilities. Some physicians also have nurse practitioners who see patients and have on-call responsibilities. Occasionally, you may have contact with medical students, but they have very little individual responsibility and always are supervised. All physicians-in-training receive supervision from faculty members.
The impact of so many different physicians-in-training is that you often see more people than your own doctor who may not be available when you have a problem. The involvement of so many people may affect your sense of feeling cared for and the sense of security that comes from knowing that your doctor will be available when you are in need. Someone always will be available, but you may not be able to specify who it is, and this person may not know you as an individual.
Sometimes, several people may come with your doctor into the exam room, reducing your privacy and possibly making it more difficult for you to express your concerns and feelings. There are two ways to handle the group of medical specialists — ignore them and speak only to the primary physician, or enlist the others in your care by speaking to each one and making eye contact. Tell your doctor if you are not comfortable with the others at certain times or if you need to speak with your doctor privately. Most doctors will accommodate and respect your needs.
If you are being seen in a university-teaching hospital, it is important to understand what you can expect. These are some issues to discuss with your physician:
- Who will take day-to-day responsibility for your care?
- Who will actually perform the surgery or other procedures?
- How often will your doctor visit or check on you when in the hospital?
- If you really need to see your doctor, will he or she come?
- How much contact can you expect from your doctor?
Understand the Basic Mechanics of the Medical Environment
Whether your care is in a university-teaching medical center or in a private office, you should know how the following situations are handled:
Emergencies: Sometimes doctors share on-call duties with their partners, associates and physicians from another office or residents and fellows. Find out what your doctor does so that you are not surprised in an emergency.
Telephone calls : Some doctors take calls immediately from their patients; others answer calls only at the end of the day. You need to know what to expect, and when you can count on your doctor to return your call. Some doctors ask their nursing staff to handle most calls; if so, you will want to know this and whom you should expect to be hearing from. Also find out want what procedure to use if you want to speak directly to your doctor when someone else is covering his or her calls.
Special needs for rush appointments: If you are having a problem and want to see your doctor quickly, what should you expect? Will the office staff fit you into the schedule or will you have to go to another doctor? Knowing this policy in advance may be helpful to you later.
When your doctor is not available: This will vary depending on whether you are in a private-practice environment or a university-teaching medical center.
If you need to go to an emergency room: Find out in advance what procedures to use for notifying your doctor and at which hospitals he or she attends patients. Having this information will save you time and trouble should you have to go to an emergency room. Know what your insurance company wants you to do as well.
Prescriptions and prescription renewals : You will want to be able to get your medication easily and without a lot of telephone calls and trips to the pharmacy. Some doctors ask patients to call the pharmacy and have the pharmacy call them. Finding out the most efficient procedure in advance will facilitate this process when you don’t have time to spare. Often the office manager or the physician’s nurse can give you this information, but it is wise to ask your doctor as well.
Clinical Trials and Experimental Therapies
Organizations such as the National Cancer Institute (NCI) and the American Cancer Society (ACS) fund many types of cancer research. These studies address such issues as understanding the causes, prevention, and treatment of cancer. One advantage of being treated in a university-teaching medical center is that you may have access to a wider variety of these treatments which will give you access to new options as well as the opportunity to personally contribute to furthering science.
New therapies are always under investigation. Research studies continue to test new chemotherapies and different combinations of drugs for different kinds of cancers as well as comparisons among drugs to discover the most efficient treatments. These studies are planned by groups of professionals from a variety of fields. In most cases, many investigators work together to bring multiple levels of expertise into one study. Only the most scientifically sound studies actually receive funding from the NCI or other sources. Once these studies are funded, they have to be carried out, and accurate, reliable information must be collected to answer specific questions. Once the drugs and/or treatments have had some initial testing, a larger study is conducted involving many patients who have similar characteristics. These studies are often referred to as “clinical trials.”
Your doctor may ask you to participate in a clinical trial or you may want to ask if you qualify for one. Your participation represents an important contribution that you can make to learning more about cancer and its treatments. This scientific process is our best method of advancing knowledge about this disease.
You can ask your doctor about clinical trials or you can call a special information line called the “Cancer Information Service” which is funded by the NCI. For information, call 1-800-4-CANCER.
Participating in a Clinical Trial
If you consider participating in a clinical trial, here are a few facts that you should know:
You will be asked to give your informed consent prior to participating. Before you do this, you will be provided with written and verbal information about what is expected of you and what are the possible consequences. Read this information carefully and ask questions if you do not understand it.
Many clinical trials are “randomized trials” which means that you will be assigned to a specific group by a process that is similar to a throw of the dice. This random assignment enables trials to be more scientifically sound.
Some randomized trials are also “double-blind” trials which means that only a few independent scientists know which treatment you are getting. Everyone is kept in the dark about which group you are in until the study is over. This “double blind” technique helps the study to be more scientifically sound by reducing the chance of something influencing the results. Of course, if you experience any problems while on the study and need to find out what treatment you are receiving, you will have access to this information.
Recently, the NCI has required patients who participate in any clinical trial to be asked questions about their quality of life — how they feel, what they can do, and so forth. The NCI now recognizes that, in addition to the impact of treatment on disease, studies need to address quality-of-life issues. You may be asked, therefore, to participate in interviews or to complete checklists and questionnaires. This feedback is a very important aspect of the clinical trial. For example, if two treatments are found to be equally effective in destroying cancer, but one makes a person ill and tired while the other has minimal effects, then this distinction would be important to know. With this information, patients can be more informed and appropriate recommendations can be made.
Ask your doctor, or whoever is in charge of the trial, the following questions:
- Is this the best treatment alternative for me?
- If I do not participate in this trial, what other treatments would you offer me?
- Is this a randomized trial? What are the possible treatments that I might be randomized to?
- What are the benefits and drawbacks to participating in this trial?
- What are the possible side effects?
- How do these side effects differ from the side effects that I would have from the alternative treatment?
- What will I have to pay for?
- What will the study pay for?
- How long do I have to participate?
- What do I need to do to end my participation?
- What will be expected of me? What kind of tests will I undergo? What kind of written materials?
- Will this information be confidential?
- Will I have to see any other doctors?
Clinical trials can be a wonderful opportunity but they are not right for everyone. Consider your options carefully, discuss the issues with people whom you trust, and then make your decision. Our Center’s staff is available to help you consider your psychological needs in this decision-making process and can serve as a sounding board.
Our goal at UCLA is to work with patients and physicians to achieve the best possible working relationships given the constraints of the system. Remember, we are here to help you.
Anne Coscarelli, Ph.D.
Wallis Annenberg Director’s Initiative in Psychosocial Oncology
© Anne Coscarelli, Ph.D. All rights reserved. 1996.
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