Are you informed as a patient? Don’t bet on it

We want to let you in on a secret.

As your oncologists, we’d like to treat you with two, or three, or four different chemotherapy drugs, each of which has distinct side effects, some of which can kill you.

Or, if we were cardiothoracic surgeons, we might tell you that we need to crack your chest open to repair your damaged heart valve, and for that to happen you will need to undergo anesthesia from which you may never wake up.

As doctors, our goal is to help you, of course, and to do no harm. But we may actually hurt you, irreversibly. Not that this happens frequently, but it might.

How does that sound? Ready to take the plunge?

The secret is that informed consent in health care is commonly not-so-well informed. It might be a document we ask you to sign, at the behest of our lawyers, in case we end up in court if a bad outcome happens. Unfortunately, it is often not really about informing you.

In schools, teachers determine what students know through tests and homework. The standard is not whether the teacher has explained how to add, but instead whether the student can add. If we were truly invested in whether you were informed, we’d give you a quiz, or at least ask you to repeat back to us what you heard so we could assess its accuracy. Instead, our script frequently looks more like this:

Us: Blah blah blah.

You, as the patient, nod, and look like you are paying close attention.

Us: Did you understand everything we said?

You: Yes.

Us: Any questions?

You: No.

There is a sort of collusion that takes place, and we are all complicit. Over your lifetime of seeing us, we have trained you that we will look impatient and concerned if you say you did not understand something or if you have a lot of questions. After all, we are busy and have other patients to see. Shame on us.

We have been on the receiving end of this, too. We have both undergone medical procedures ourselves for which a colleague asked us to acknowledge that we were properly informed. We said we were, fearing disappointing our doctor if we said otherwise.

Unfortunately the farce of informed consent only worsens in medical research. Before you can enroll in a clinical trial of a cancer drug, we will hand you a 25-page document that describes the trial’s purpose, its design, the medications you will receive, other standard treatments and the complications you may suffer. Oh, and we will tell you that you are responsible for any medical costs not covered by insurance or the trial sponsor. That is for the lawyers, again. We will then ask you to sign the final page, acknowledging your understanding and your agreement to participate in the trial.

When is the last time you read a 25-page document from beginning to end?

But maybe it’s OK if you do not read it. Some people do not want to hear about potential bad outcomes. Others trust their doctors to recommend what is best for their health, and find comfort in handing decisions about interventions like chemotherapy or heart surgery over to another. We tell our patients that if it makes their cancer journeys any easier, we will do the worrying for them.

And we really do wring our hands about our decisions, and rend our garments over bad outcomes that result from our recommendations.

A fundamental challenge with this process is that it is often unrealistic to think that you actually could be fully informed of what you are about to undergo. How can we explain to you the experience of having your chest cracked open, or what it feels like when you go through chemotherapy? Neither of us has undergone heart surgery, or treatment for cancer, and we do not kid ourselves that any depiction of the experience we provide will be enough.

We would love for you to help us do a better job of informing you, though. So here is our request:

• Ask us to use common words and terms. If your doctor says that you will end up with a “simple iliac ileal conduit” or a “urostomy,” feel free to say “I don’t understand those words. Can you explain what that means?”

• Summarize back what you heard. “So I should split my birth control pills in half and take half myself and give the other half to my boyfriend?” That way, if you have misunderstood what we did a poor job of explaining, there will be a chance to straighten it out: “No, that’s not right. You should take the whole pill yourself.”

• Request written materials, or even pictures or videos. We all learn in different ways and at different paces, and “hard copies” of information that you can take time to absorb at home may be more helpful than the few minutes in our offices.

• Ask for best-case, worst-case and most likely scenarios, along with the chance of each one occurring.

• Ask if you can talk to someone who has undergone the surgery, or received the chemotherapy. That person will have a different kind of understanding of what the experience was like than we do.

• Explore alternative treatment options, along with the advantages and disadvantages of each. “If I saw 10 different experts in my condition, how many would recommend the same treatment you are recommending?"

• Take notes, and bring someone else to your appointments to be your advocate, ask the questions you may be reluctant to ask and be your “accessory brain,” to help process the information we are trying to convey.

We have seen too many patients regret decisions that they made without fully understanding their options, or the possible outcome. We encourage our patients, and our colleagues, to be partners in what are often life-changing decisions about health care.

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