SEPTEMBER 2017 ON HEALTH CONSUMER REPORTS 11 CR.ORG/HEALTH A  fter seeing an ear, nose, and throat doctor for ear pain and congestion, my 21-year-old son was told to come back 2 hours later for “some testing.” When he returned, no physician was present, and he received no explanation of why the testing (which turned out to be allergy testing) was or- dered, how it would be conducted, pos- sible side effects, or available alternatives. Had that discussion—called informed consent—taken place, my son would have told them that he’d had skin testing at an allergist’s office two weeks earlier. Informed consent is one of the most abused and misunderstood concepts in medical care today. It’s intended to be a conversational process where your clini- cian explains the risks and benefits of a specific test, procedure, surgery, or other treatment to you. The doctor should also outline other options and make it clear that you are helping to make decisions about your care. You confirm your un- derstanding of what you’ve been told and agree to—or reject—the recommendation. Today, however, some doctors have be- come far too casual about how—or even whether­ —they attain informed consent. Instead of the shared decision-making con- versation that should take place, the goal has shifted to getting you to sign a piece of paper (a release) indicating that you are clear on the proposed course of action so that a doctor or hospital feels legally pro- tected in case something goes wrong. But for your consent to be considered valid, it must be voluntary. And most people feel vulnerable when a doctor asks them to sign a release—intimidated, coerced, or uncomfortable about making a fuss. Here’s how to make sure you are truly informed about informed consent: WHEN IT SHOULD HAPPEN Your doctor should initiate an in- formed consent discussion if he or she Proactive Patient recommends anesthesia, surgery, or any invasive procedure (one that “invades” the body, usually by piercing the skin), or you are asked to be in a clinical re- search trial. Unfortunately, there is no national consensus on when informed consent is required. It varies from state to state and can be influenced by a doctor or hospi- tal’s interpretation of recommendations from professional and specialty groups. But those interpretations are not always correct. For example, the Ameri- can Academy of Allergy, Asthma & Im- munology’s sample informed consent form for allergy skin testing notes that a physician or other healthcare professional will be on hand because “oc- casional reactions may require immedi- ate therapy.” That didn’t happen in my son’s situation. HOW THE TALK SHOULD GO During informed consent, your doctor should explain the procedure, test, or treatment in plain words and without jargon—and tell you what roles each healthcare provider will play. This should be a thorough verbal dis- cussion—a release form should serve as a supplement to this, not a replacement. In fact, the form should merely confirm that the discussion took place. A good informed consent discussion also uses decision aids, interactive me- dia, or digital tools. It should include information from medical studies, best practices, and clinical guidelines. Your doctor should pull in a qualified medi- cal interpreter, if needed, and allow for assistance for limited English proficiency or hearing or visual impairment. MAKE SURE YOU UNDERSTAND You should be able to take notes, bring along a friend or family member, ask questions, get clarifications on anything that’s unclear, and have time to consider your options before you decide. (After- ward, it’s useful to summarize back the highlights of what you heard.) If you feel rushed or ignored, ask whether the decision can be delayed until your doctor can answer your questions fully. (In emergencies, or if you are un- able to communicate, informed consent may not be necessary.) And if you’re uncomfortable, you have the right to say no. The Fourteenth Amend- ment provides that no state shall “deprive any person of life, liberty, or property, with- out due process of law.” The principle that a competent person has a constitutionally protected right to refuse unwanted medi- cal treatment applies to informed consent. ORLY AVITZUR, M.D., M.B.A., is Consumer Reports’ medical director. Board certified in neurology, she is a fellow of the American Academy of Neurology, a clinical instructor at the Yale University School of Medicine, and a medical consultant to the New York Rangers hockey team. Why You Need Informed Consent This important doctor-and-patient conversation helps you understand risks and benefits of treatment. But it’s not always done right.   Informed consent is one of the most abused and misunderstood concepts in medical care today. Orly Avitzur, M.D., M.B.A. ILLUSTR ATION: EDMON DE HARO