One of the highlights of the Telluride Patient Safety Summer Camp was the in-depth discussion of the meaning of informed consent. It is not as straightforward as “here, sign this”. In fact the paper consent itself is in a sense the last and least component of informed consent. I was a bit surprised and secretly glad to hear some places have rid themselves of the informed consent form, which reinforces the notion that informed consent is some kind of administrative scut to be dished out to residents. Informed consent isn’t extra, it isn’t something for special procedures, it really should be an integrated part of every doctor-patient relationship. The heart of it is shared decision making and coming to the best course of action based on the patient’s preferences, values, needs, and goals. (“Preferences, values, needs, and goals” was in fact one of my takeaways – a mental checklist worth committing to memory.) Granted, we do have a long way to go in learning the best way to approach individual patients. The ideal of informed consent and shared decision making poses a number of difficult issues. For example, people don’t perceive risks and benefits in the most rational way, especially when presented as numerical probabilities.
Doctor: “The risk of death is 1 in 100,000.”
Patient: “I’m sorry, all I heard was death!”
(Lest we think we are special, it’s people who struggle with perception, not just patients.)
Further difficulties arise when patients are in some ways incapable of truly understanding certain risks because they do not live in the healthcare world. They haven’t seen what it’s like to be in the ICU for a prolonged stay with a “complicated post-op course”. And of course, there is the perception that risks are things that happen to other people, but not to me.
To add to the complexity, doctors may inject their own biases – either optimism or otherwise – into conversations about risks and benefits. “The risks include bleeding, infection, and death, but that’s like any procedure. We kind of have to say that with pretty much any procedure we do these days…”
Again – I think we have a good idea what the ideal of informed consent looks like, but the issues presented in getting there are a different story.
That said, the issue of publishing infection rates comes up in the context of transparency. In fact, infection rates have everything to do with informed consent, too. If I’m having a procedure that puts me at risk for infection, wouldn’t it be nice to know exactly how much risk I’m undertaking, particularly from hospital to hospital? Sure, I could find some bulk statistics for the infection risk of the procedure in a textbook (or government website) somewhere, and that information is likely to be outdated. If I’m having the procedure done at hospital X, then the most accurate estimate of my true risk of infection will most likely be the actual rate of infections at hospital X. If a hospital has enough volume of a certain procedure, they ought to track their own complication rates. It’s more than just transparency, it’s about being as honest and as forthright as you can, and providing patients with the best, most accurate and up-to-date information about what kind of outcomes they can expect when they come to your hospital.