Uninformed Consent

The last time you consented to a procedure, test, or drug, were you told the whole story? Research suggests that you most likely were not.

There are a lot of reasons why this happens, but there are some things you can do to be sure that when you give your consent to having something done, your “yes” really means “yes,” and  you genuinely understand.

A True Story

When I was a nursing student at a large university hospital in Los Angeles, I was taking care of a man who was slated for surgery the next day. He had a large tumor in his neck. I was asked to review his consent form with him and ask him to sign it.

Looking over the form, I noticed that the surgery would include removal of his tongue, and because that would have a significant impact on his life, I specifically asked him if he was aware that he would be speechless for some time, perhaps permanently. His answer wasn’t what I was expecting. “What?” he asked.

“Well, as part of the surgery, and I am sure your surgeon explained this to you, your tongue will be removed. As a result, at least initially, you will not be able to speak,” I replied.

He was shocked. I was shocked that he was shocked. He said he had never been told. He picked up the phone and called his wife.  She, too, was completely surprised. He asked me what he should do. I told him he should talk to his surgeon before signing the consent form.

A few weeks later I learned that he had ended up checking  himself out of the hospital that night and having a slightly different surgery at another hospital a week or so later. By the way, he didn’t end up having to have tongue removed.

The moral of the story: know that you can’t assume you’ve been told all that you need to know to make a decision that is right for you.

Uninformed Consent Is Common

Just three out of 100. That’s how many patients were told everything they needed to know before agreeing to an elective (optional) invasive procedure, according to a study published in JAMA Internal Medicine last year. It’s very sad.

The study looked at how many people had heard all the information they needed before consenting to have a heart stent placed. The research found that too many people are not told the whole story, the full range of pros and cons related to a procedure, test or drug.

John Mandrola, M.D., a cardiac electrophysiologist at Baptist Health in Louisville, Kentucky, put it succinctly in an article in Medscape this month:

“Providing a truthful and complete informed consent lies at the core of being an ethical and moral caregiver. If a patient is harmed during a procedure — one in which benefits were greater than harms, and that patient understood the risk — then we sleep at night.” But he added that when the procedure is not necessary, but the patient is led to believe they “need” the procedure, then there is a big problem.

What You Should Do

Dr. Mandrola says there are things you know in order to consent to a drug, test or procedure. Before consenting, be sure you:

  • Understand that you have a role in making the decision.
  • Understand the issue and the decision you are making.
  • Know the alternatives.
  • Know the pros and cons of the alternatives.
  • Know the uncertainties.
  • Express and discuss your preference.

The bottom line: With most of health care today, there’s room to consider a patient’s preference. There are almost always a range of options. There is rarely just one “correct” approach. Your knowledge, understanding and personal choice matter.

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About Barbara Bronson Gray, RN, MN

I'm an experienced healthcare and science editor and journalist. But most of all, I'm a registered nurse with many years of experience working in hospitals. I've learned what patients and families need first hand. But I've also worked to improve hospitals and educate people about their health. I'm committed to helping people take charge of their health care and get what they need from a complex and often discouraging healthcare system.
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