Usually before a heath care professional can touch a patient, a consent form must be signed. But if patients don’t understand the form, they can’t make informed choices about whether to begin or continue medical treatments. Not fully understanding the risks of a certain procedure puts the patient’s health in jeopardy.
Think about the last time you signed a consent form before a surgery or other medical procedure. Did you understand it? Did you even read it?
Many patients deal with consent forms the same way they handle software downloads where one scrolls to the bottom as quickly as possible and clicks “agree.”
Why? Because the medical disclosure and consent documents often contain technical language that patients do not understand. But rather than giving these forms a cursory read and thereby giving our less-than-informed consent, we need to become invested in making this process more patient-friendly.
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During a meeting with my research team, a research assistant pointed out a puzzling term on the consent form we were reviewing. She said, “ Trocar site complication — well, that risk needs to be translated into English, right?”
“No,” I informed her. “That’s actually already in English.”
If a team of health communication scholars and students with advanced degrees has trouble wading through consent form details, then the average Texas patient, who has a high school education, surely needs our help.
In one of the studies that I led at The University of Texas at Austin, we revised one of Texas’ existing informed consent templates to make it more comprehensible. We simplified complex sentences and gave definitions of medical terms, for example, explaining that “acute myocardial infarction” is “commonly known as a heart attack.”
Then my team quizzed participants about the meaning of the information in the forms. Only 4 percent of patients who read the original form understood all of the terms we asked them to define, but 57 percent of patients got a “perfect score” on our quiz when they reviewed our updated document. The statistical differences we observed were the largest that have ever been published in the scientific literature on informed consent interventions.
If you are a patient, take your time with all consent forms and ask about anything you don’t understand. You are entitled to provide truly informed consent, or refuse treatment, thanks to your constitutionally protected right to privacy; do not relinquish this.
Providers, for their part, can gauge patients’ understanding and use their expertise to describe procedures in greater detail with everyday language and even by drawing pictures. Health care organizations should reach out to health communication scholars for assistance in improving the documents that they distribute to patients.
Texas is becoming a leader in promoting patient-centered consent practices. In addition to my work, researchers at other universities in the state are beginning to take up this topic. Texans are fortunate to have the Texas Medical Disclosure Panel, which is a group of physicians and attorneys that determines what risks and hazards must be disclosed during informed consent and how they should be made.
The panel works to ensure that state regulations serve the needs of patients and health care providers, and they are working to improve our current disclosure and consent forms. These proposed changes are simple, inexpensive and worth it. We owe it to ourselves not to sign our lives away.
Erin Donovan is an assistant professor of communication studies in the Moody College of Communication at The University of Texas at Austin.