Just sign here: That isn’t real informed consent

Before patients can become savvy consumers of healthcare, they need information about their healthcare choices.  Too often, such information is nearly impossible to get, especially when it requires doctors to give patients useful statistics about things like treatment side effects.

Since publishing Critical Decisions this fall, I have received a number of emails from readers who have recognized their own medical histories in the pages of my book.  I received a particularly entertaining email from a professor in Canada, who relayed the following story.

He was in an emergency room suffering from kidney stones.  And for those of you who have never experienced kidney stones, take it from my mother: they are insanely painful.  “Worse than having twins,” she told me.  (And this from a woman who, when I asked her how much it hurt to give birth to me, answered: “Ever tried to fart a football?”)

Suffice it to say, then, that Professor Mike was in a whole lot of pain, at least until they gave him a dose of morphine.  Then they decided they needed to further diagnose his problem.

“You need a kidney x-ray,” he was told by the emergency room physician.  Such an x-ray can show whether a huge stone is causing a dangerous blockage of urinary flow.  Professor Mike nodded obediently.  Then an x-ray tech showed up at his bedside and the conversation went something like this:

“You need to drink this dye before your x-ray.”

“Ok.”

“The dye does have some side effects.  It could cause a rash or it could cause death,” the tech continued.  “Just sign here and we can take you to radiology.”

“Umm, are you telling me that the chance of a rash is the same as a chance of death?,” Professor Mike asked.

“Umm, there is a small probability of either one happening.”

“What, exactly, are those probabilities?”

The tech turned and left the room, frazzled by the professor’s unwillingness to sign the informed consent document without more information.  A couple minutes later, the radiologist returned: “I understand you want more information.  But we are reluctant to give patients specific probabilities of side effects, because we have learned that such numbers confuse them.”

Professor Mike, with his advanced training in statistics, was unlikely to be confused by a few simple probabilities, so he pushed back and asked the doctor to give him estimates: “I don’t know them,” the radiologist responded.

“Don’t know them?  So what’s the real reason you don’t tell patients—you think the probabilities will confuse them, or you don’t know the probabilities?”  Professor Mike, even with morphine coursing through his system, kept a clear head in the face of this absurd situation.  He decided to help the radiologist think through the issue:

“Approximately how many x-rays like this has your hospital done in the last few years?,” he asked.

“Oh, at least 350,” the radiologist responded.

“And how many deaths?”

“None.”

“Ok,” said Professor Mike.  “I will sign the form.  But if I die, my wife will sue the hell out of you, because this is not informed consent!”

Peter Ubel is a physician and behavioral scientist who blogs at his self-titled site, Peter Ubel and can be reached on Twitter @PeterUbel.  He is the author of Critical Decisions: How You and Your Doctor Can Make the Right Medical Choices Together.

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  • http://Meddebate.com/ Jamal Ross

    With a large amount of free online information, intended primarily for medical professionals, regarding medical procedures and inherent risks, i often find that patients come to the hospital having already assessed their own individual risks. A lot of the time, that also includes a very small risk of something which, at least to the patient, sounds unbearable. To a patient, statistics don’t usually carry much weight. If there is a chance of something bad happening, they could either be in that unlucky pool or not be in that pool. Most patients I have seen think in this binary way and so it feels more like a 50/50 situation to them almost all of the time.

    • SarahJ91

      I learned percentages in sixth grade. Please try to not be so patronizing.

    • EE Smith

      “To a patient, statistics don’t usually carry much weight.”

      So just deny 100% of your patients the right to informed consent, on the arrogant assumption that they’re all mouth-breathing knuckle-dragging illiterate retards and so any information would be wasted on them anyway?

      Supercilious prick.

      • Noni

        Jeez, overreact much? Where did he say patients should be denied informed consent? He was merely commenting about his observation.

        There is nothing inherently offensive in his post. You’re projecting your hatred of doctors onto him.

    • Homeless

      I have seen studies that show that many doctors don’t understand statistics…one involving primary care physicians and another involving OB/GYNs.

      • bill10526

        When working with parents who had a problem birth, it was observed that everybody, regardless of eduction, believed there was a 50/50 chance that their next pregnancy would be troubled. The 50/50 bias is very strong.

        If the professor had used Bayes Theorem, he would have deduced that any procedure with a meaningful rate of adverse outcomes would have been sued out of existence.

    • penguin50

      I don’t understand why people are responding with such hostility to Jamal’s comment, which, as a patient, I find neither patronizing nor arrogant. He is simply pointing out the interesting psychological dynamic in which people tend to unconsciously take a small-but-highly-feared risk and react to it as though it were a nearly inevitable outcome. This is something that happens all the time and not just in the medical realm. Their fear inflates their perception of the actual risk involved.

      • Kris61

        Ok so if Doctors shouldn’t bother to give Patients any information because the Patients will just misunderstand it anyway, why keep calling it “INFORMED Consent”?? Why not just drop the charade and call it “Consent”? If there’s no point confusing Patients with the Facts, ok, but if there’s no information there’s no informed consent.

        It’s not “INFORMED Consent” if the first half of the equation is missing, and it’s wrong to demand that patients sign a document saying they have been informed when they have not been.

      • Payne Hertz

        Considering some studies show that 1 in 3 hospital admissions result in a medical error, and some 15 percent of admissions result in actual harm to the patient, do you really think patients’ perception of the risk they face is exaggerated?

        • Mike M.

          Exactly.

        • adh1729

          My patients do astronomically better than that. You saying that I walk on water or something? (Honestly I think those studies are trash, or maybe they came out of Cameroon.)

    • Payne Hertz

      Considering how doctors react to a once in a career chance of being sued, how do you expect patients to react to say, a 1 in 100 chance of dying during a procedure? It isn’t informed consent unless the patient knows precisely the risk he’s facing.

    • Suzi Q 38

      I understand your thought process on this, but this particular patient was different and clearly wanted more information.
      I say…just give it to him.

  • JonSanders

    In the last two point five years of wandering through the medical machine I have learned to trust my judgment. There have been times when I was right to say “No” and there were times when “No” would have been the right answer but I didn’t have enough information.

  • ninguem

    I think at that point, I would cancel the X-ray and kick the patient back to the referring physician.

    • Mere Mommy

      So if you try to BS a patient, and he or she calls you on it and tries to get the truth, you punish them?

      • http://www.facebook.com/marilyn.shively.5 Marilyn Shively

        pretty scary isn’t it?

        • SarahJ91

          Yep. And they wonder why we don’t immediately trust them when they walk in the room for the first time.

      • Mandy

        And some doctors wonder why they get bad Press-Ganey scores, or even get sued…

      • Suzi Q 38

        I think his answer was “yes.”

      • Noni

        I think Ninguem is saying that he would not proceed in this case when the patient openly threatens to sue should a complication arise.

        However, in the article I agree with this patient. If that was the really the consent process it was NOT informed and I’d be pretty pissed too!

      • Payne Hertz

        That’s pretty much what happened to me at the VA. Narcissistic doctor lied through his teeth to me, I called him on it, and his baby ego was so bruised at being outed as a fraud by a mortal he had me blacklisted. It has been a ten year battle to get that thug off my back and out of my medical care.

        Be careful when you question the gods. They might stab you in the back.

    • EE Smith

      See, people? Many doctors ARE bullies who will take it out on you if you dare stand up for yourself and your right to informed consent. Have to say I’m a little amazed to see them admit it so publicly, though.

      • ninguem

        To all the hysterical idiots above.

        The person needs informed consent from the beginning. Not just the risk of the procedure, but the risks of NOT doing the procedure, and the reason for doing the procedure in the first place, as opposed to alternatives. That needs to come from the referring physician.

        Frankly, I don’t believe the story in the first place, the risks of the procedure would be well-known to the radiologist. This person needs to understand the risks of doing and not doing the procedure within the context of managing his disease.

        I have had people upset that I ***HAVE*** explained the risks of a procedure, their feeling that by explaining the risks I have somehow immunized myself against lawsuits.

        When I have had too many questions over specialty procedures, the risk of the procedure and the overall need to do the procedure in the management of the person’s disease, yes I **HAVE** cancelled the procedure to kick the patient back to the referring doc to explain the need for that specialty work I was involved in, as opposed to the many other ways the disease could be managed.

        You don’t like it, too bad. I like to think that delaying an elective procedure until the patient understands thoroughly the nature of the procedure AND ALTERNATIVES, is a good idea.

        Obviously some here disagree. And I especially do that if the person is threatening to “sue the hell” out of someone before even starting.

        • MM

          This is what the doctor said: “I understand you want more information. But we are reluctant to give
          patients specific probabilities of side effects, because we have learned
          that such numbers confuse them.”

          And if a patient objected to that, you admitted that you would get narky and “kick the patient back”.

          Dude.

          • ninguem

            First of all, it’s what the doctor is alleged to have said, third-hand. I don’t believe the story.

            If the radiologist really didn’t know the literature complication rate of a contrast study, the patient would be done a favor to cancel and refer back to the primary doc who can refer to a facility where the radiologists know what they’re doing. IF the radiologist didn’t know the complication rate as was alleged…….I don’t believe the story.

            If the question is more likely the complication rate of the procedure versus doing nothing versus urology referral versus alternative imaging………matters not known to the radiologist without the whole clinical picture……the patient is still better off delaying the imaging.

            Since “informed consent” is not taking place, the patient is still better off going back to the referring doc.

            If the patient is saying informed consent has not happened, and the procedure is elective, then cancel and start from the beginning.

          • Homeless

            So you recommend this patient with a painful kidney stone delay imaging? Call his PCP for an appointment next Tuesday so he can be referred to a radiology facility that knows statistics?

          • ninguem

            Uh….hello……it’s the PATIENT who didn’t want the procedure done, unless he was in possession of a certain number, the literature risk of a contrast reaction.

            By the story given, 350 people that year were happy with knowing the benefit outweighed the risk. This individual wanted to know exact numbers.

            The radiologist didn’t have it. It’s not that I want to delay the imaging because of lack of statistics, it’s the patient himself who wanted to delay the procedure for lack of statistics. In fact, he had statistics, he had the knowledge that there hadn’t been a death there for years, the institution had done hundreds over “several years”

            In fact, he was threatening litigation unless he had a number. He was not satisfied with the explanation he was given by the ER doc or the radiologist.

            So…….delay until he gets the number he wants to hear.

          • Suzi Q 38

            Everyone is different.
            Not everyone will just accept what you say.
            They want a two-way dialogue…this one was wanting more information. Be a teacher and sales rep at the same time and explain it to him.
            I would have gladly gone to another radiologist if there was another one available.
            You are a jerk to say that you would refuse to treat him.
            If he went downhill because of your decision, you might be reprimanded for it. If he was mad enough, the lawyer card would come out because you were such a blatant, uncaring jerk.
            He was high on morphine, a few minutes to get him the right information shouldn’t be a problem.

          • ninguem

            OK, what statistic does he want? He was just told their institutional death rate is zero over several years, with 350 procedures performed. HE’S the one not satisfied with that number.

            So, the procedure is delayed until he gets what he wants. That may well require further explanation from the emergency doc right there.

            Did I say anything about “refusing to treat” anyone?

          • Suzi Q 38

            Here’s a very real example: Mine.
            A neurologist needed to rule out MS with a lumbar puncture.
            I was given an appointment for one, along with some blood tests and a brain scan. All to be done in one day.
            My husband and I show up at the teaching hospital, and they do not have an appointment for me to have my lumbar puncture. I was fairly mad, because I pointed out all 3 procedures to the clerical person when I booked the appointments a couple of weeks prior. The LP particularly is “nasty” and uncomfortable, so I needed my husband for moral support and to drive me home. We both had taken the day off of work.
            Anyway, no one had called me to let me know that I needed to withhold my daily aspirin (81 mg) that I had taken every night prior to the LP.

            They did get me an anesthesiologist to do it at the last minute, and I questioned whether it should be done at all. In spite of the fact that I was not happy with the lack of scheduling ( all 3 orders were on the same appointment request paper), I didn’t want to have it if the aspirin intake made it a “deal breaker.”

            The anesthesiologist sensed my concern, so he wisely came up with a study that showed that while it was not preferable to have taken it prior, that it was O.K. to do so. He brought it over to me, and since it came from a credible publication, I “bought it.”

            I allowed the LP to be done.

            I am sure not all of his patients would have done the same thing I did. I am just different.

            If he had been rude to me and kicked me back to my neuro, I would have been fine with it. I would have merely asked for another anesthesiologist to calmly explain it to me in less than neanderthal terms.

            I will admit that the “different” that I am speaking of is
            psychological for me. I have OCD (obsessive compulsive disorder). Patients like me want to see the stats or the study. I have had OCD since the age of 8, so no mere radiologist or anesthesiologist is going to change that.

            Your patients will have a myriad of backgrounds educational, career, social, and psychological. Because you deal with a diverse spectrum of people, it is your job to adjust with each patient. Not everyone will be easy.
            If it is not a huge deal, just be confident rather than annoyed and “go with it.”

        • http://Medicalmalpracticepatient.com/ KNOT JUST a patient

          It is a very real story! It may be a sign here, CYA, formality to you, but it is a consultation for the patient and any and all questions should be answered. If you scare them, then you scare them. Doctors should know the information inside and out on consent forms and where the information came from. It is the patients decision not yours. If you lose a procedure, then you lose a procedure. It is simple! Do your JOB.

          • Suzi Q 38

            Yes! Some people want to know, and some leave it all to the “doctor Gods.”
            We are all different.

          • Kris61

            Doctors want the CYA protection of a signed “INFORMED Consent” contract, but they don’t want to actually have to do the “INFORM” part. They should just cross out the “INFORMED” part of the statement.

            ——–

            “I, Kris61, give consent for this procedure, on the basis that my Doctor said that although it’s all too confusing for ordinary citizens to understand, he thinks I should have it done.” Period. A consent form based on reality, not some fantasy.

      • Mike M.

        First Rule of Holes, Ninguem: Stop digging.

        STOP. DIGGING.

    • http://profiles.google.com/mhirzel Mary L. Hirzel

      You really ought to get out of medicine.

  • petromccrum

    This is going to happen more and more as patients educate themselves.
    Healthcare professionals need “to get with the program”. Know what you are talking about. I was asked to sign a consent form on the way to surgery. How is that informed consent? Would I do it again; absolutely not.

  • meyati

    Informed consent with a surgeon—The top of the release says binding contract-the bottom has room for your name and date, In between it’s blank-and you pay with your body. Conservative isn’t in a surgeon’s dictionary. I have ear troubles because of a wild cut surgeon. I hate them. I had lidocaine-and after being sewed up- the surgeon says I’m sorry- I took too much out-I’m missing part of my nose, lip, and tissue in between. My face always aches. Radiation was difficult because of my nose being too small. It’s hard to eat-and it hurts to talk. In her mind-I’d have all of the flesh removed from the right side of my face. The next one wanted to remove the bone too- Why-it’s incurable?

    • EE Smith

      Whatever you do, don’t question them. As one of the goodly doctors pointed out above, they will use their power over you to make you pay for such impertinences. KNOW YOUR PLACE, you stupid peasants!

      • meyati

        I’ve already been poisoned by a doctor that I got along with-statin toxicity. At least he’s man enough to own up and he takes excellent care of me. It helps that I take responsibility for finally saying-Yes- and taking the poison. Oncology has been something else. I was told told that I needed to have the right side of my face cut out, including bone. The nincompoop didn’t order any lab work either. I got my PCP to order lab work-so the oncologist must be in a stage of dementia, which goes with nincompoop. I cursed in 4 languages-quite loudly-filed complaints all over the place-and I got a good doctor– I have a good team now- My PCP that goes to bat for me-a new team leader that understands my fears- broke some policies and made sure that I can contact him any time-and he goes beyond what I ask-like my PCP. I have a wonderful oncology radiologist that when he met me- He smiled and said-I heard that you kicked ass and shook things up. He tells people that I did my own research. My X was enlisted- but I kicked ass in the military. I’m not a peasant- I’m a redneck Hillbilly that belongs to Phi Kappa Phi and Phi Beta Kappa- All you got to do is to document, document, and document. Another thing- take care of myself- and don’t pester them or whine- Don’t let the jerks know that they’ve beaten you down-I got rid of the stupid nurse navigator–I’ll tell you another tip- bake them cookies or pastries- and smile and say- Thank you. when they do good. You can’t expect a doctor to treat you with respect when you use them for a whipping boy.

  • Suzi Q 38

    “…such numbers confuse them???” Is the doctor a pompous moron?
    I doubt that simple statistics would confuse any one of us.

  • Mike M.

    If you think that your patient is too stupid to understand the risks of the procedure you’re demanding they sign an “Informed Consent” statement for, you shouldn’t skip the explanation and then try to bully them into signing it anyway. Some doctors here seem to think that ALL patients are too stupid to bother trying to explain things to. I find that disturbing.

  • Adriana

    I’ll have to start by giving the poster “Jamal Ross” a hat-tip. Few things more clearly exemplify what’s wrong with healthcare than that posters patronizing remarks. Really? Patients don’t understand percentages, we’re just too stupid or ignorant.

    Thanks for making our case and showing where the real problem is!