* This is the Consumer Version. *
Overview of Medical Decision Making
People and their doctors must make many decisions about medical issues. People must decide whether and when to see a doctor. Doctors must decide what to advise people to do in order to stay well or become well. They both must make decisions about which tests, if any, should be done and which treatment, if any, should be done.
Medical testing decisions and medical treatment decisions can be complex, and they require that doctors balance their knowledge of diseases, tests, treatments, and the individual person to help people meet their health-related goals. Making decisions about medical care is most effective when doctors and patients work together. The best and most appropriate decisions are reached when the doctor’s experience and knowledge of medicine are combined with the patient’s knowledge, wishes, and values.
Before doing complicated, expensive, and/or potentially dangerous tests, doctors typically have a detailed conversation with people regarding the goals of the diagnosis and treatment plan. The typical goals of a diagnostic and treatment plan are to identify and then cure a disease. However, it may not always be desirable to make a diagnosis. The following are just two instances in which this might be true:
For example, if a person in very poor health did not want to have chemotherapy or surgery if a cancer were to be diagnosed, it might not be appropriate for that person to risk the complications of an invasive diagnostic test, such as a biopsy, to diagnose cancer.
Similarly, people may not want to have tests for diseases that have no known treatment. An example is Huntington disease, which is an inherited, progressive, fatal neurologic disorder. Some people with a family history of Huntington disease would prefer not to know whether they have the gene that causes the disease. Other people would like to be tested to help guide life-planning decisions.
Doctors must judge the potential effects on their patients of any diagnostic or treatment recommendations. They must help people weigh the consequences of overlooking a serious condition, even if the diagnosis is unlikely. The same type of reasoning is used in making treatment decisions. Doctors will probably not recommend treatments for people who have a mild condition if those treatments may have serious side effects. However, if the condition is grave but cure is possible, the doctor may advise people that the potential side effects may be worth the risk.
Problems may arise when doctors and the people they treat do not share the same perceptions of risk, particularly regarding treatment. A person who hears about a possible serious side effect of a drug may be very concerned, regardless of how rarely the side effect occurs. The doctor may not be as concerned if the possibility of that side effect is remote. Alternatively, the doctor may not understand that what might seem to be a relatively minor side effect for most people may cause great problems for a particular person. For example, a person who drives for a living may be more concerned about taking a drug that can cause drowsiness.
Often, the balance between the risk of the disease and its treatment is not clear-cut. A doctor may judge the risks—and benefits—of a treatment differently than the person being treated does. People should discuss these differences in judgment with their doctors. Understanding risks can also help a person weigh options. A doctor may outline several approaches and ask the person to help decide among them. By evaluating the risks of the various choices and then factoring in personal values, a person can make more informed choices about medical care.
People should also be clear in expressing their choices to their doctors, especially if they have conditions, such as a terminal illness, that may make it impossible for them to express their wishes at some point later on (see Advance Directives).
For symptoms and disorders for which many studies have been done, there is usually a standard of care. The standard of care refers to tests and/or treatments that doctors generally agree have proven effective and thus to be recommended to people.
However, there is not a standard of care for some disorders, particularly those that are complex and hard to diagnose and treat. There may be no standard of care because studies that have been done show different results. Or in the cases of very rare diseases, because large clinical studies have not been done. When there is no standard of care, there is no one "correct" approach or treatment. One doctor might propose a treatment that is different from that proposed by another doctor. Either might be right, or both might be wrong.
The standard of care changes as new research is done. For example, in the past, doctors gave a drug called lidocaine to every person who had a heart attack. Giving lidocaine was the standard of care because studies had shown that it helped prevent a potentially fatal heart rhythm disorder called ventricular fibrillation. However, studies later showed that even though lidocaine helped prevent ventricular fibrillation, people with heart attacks who were routinely given lidocaine were more likely to die. Then the standard of care became to not give lidocaine routinely.
When there is no standard of care, particularly with rare or serious disorders or with disorders that have not responded to treatments, people may also want to consult with another doctor, particularly one who has additional expertise (that is, get a second opinion).
Most doctors rely on their education and experience: what they have learned from their training, from their colleagues, and from diagnosing and treating people with similar problems. Doctors also read medical books and journals, consult with colleagues, and refer to other resources, such as authoritative health sites on the Internet, to get more information about specific problems and to keep up with new information generated by medical research. They also review recommendations (practice guidelines) published by groups of experts.
As new research findings are published, doctors evaluate the studies and consider how their findings might best be applied. Different types of studies provide different types of information. However, while research studies provide information only about the average risk of harm and benefit, the average effects do not always tell doctors how a particular person will respond to a treatment.
A clinical trial is considered the most accurate type of study. In a controlled clinical trial, people entering the study are divided randomly (by chance) into two or more groups. One group of people receives a particular treatment or test, while the other groups (called control groups) receive different treatments or tests or no treatment or test at all. The random assignment ensures that the different groups are as similar as possible. That way, any difference in outcome is likely to be due to the treatment or test being studied rather than to an underlying and potentially unknown difference between the groups.
Although many people rely solely on their doctors for information, it is often helpful for people to obtain additional information about a recommended test or treatment before making a decision (see Researching a Disorder). Information can be obtained from
These resources may generate additional questions for people to discuss with their doctors (see Making the Most of a Health Care Visit).
The quality of medical information available on the Internet can vary greatly. Forums in which people describe their experiences with illnesses and provide suggestions can sometimes contain information that is inaccurate or even harmful. Other websites or Internet newsletters may describe conspiracy theories or solicit money with promises of providing miracle cures that, in reality, have no benefit. When researching an illness or symptom, a person should seek information from reputable websites, such as those from major medical societies (for example, the American Cancer Society or the American Heart Association) or medical institutions. The following three reputable sources are particularly helpful:
The Medical Library Association has published a resource of 100 health websites that people can trust.
The University of California at San Francisco has published a free guide to help consumers evaluate the accuracy of medical information they encounter on the Internet and red flags that indicate that the information might be untrustworthy.
The Merck Manuals have put forth the STANDS criteria for determining the credibility of online resources.
A doctor can also help a person determine whether information found on the Internet is accurate.
* This is the Consumer Version. *