The current state of informed consent in the US is best described as un-informed consent.
A study this May reported that only 3% of patients with coronary artery disease received full informed consent before having an invasive procedure.
Findings like these, and there are many other similar studies, reflect the ill-health of the medical decision in US healthcare.
It’s hardly a stretch to say most patients falsely believe stenting blockages is a fix for heart disease. Too many patients who receive cardiac defibrillators misunderstand the gamble they made. And don’t get me started on the LifeVest.
Patient-centered care and shared decisions are not platitudes; in an ethical and just healthcare system, they are normal.
Let’s review the current state of informed consent:
A patient takes a day off from work. He shows up at the hospital with a family member or friend, who has also likely taken a day off. He then gets put in a medical gown and lies flat on a gurney. The doctor comes in and stands above him. Then he is shown a piece of paper written in a small font, the language: legalese.
This is not the setting for a good decision. Instead, it’s the setting for a one-sided doctor-centered decision.
When patients don’t understand or take part in the medical decision, it’s a blemish on us as caregivers.
It does not have to be this way. Other than heart attack, stroke, a burst appendix and other emergencies, most medical decisions have multiple paths. There is time to think.
The medical decision (or we could say the medical gamble) is simple: Each path has positives, negatives and possible expectations.
In the decision to ablate AF, patients can decide to live with the disease or they can take the risk of the procedure. How one experiences a disease, or thinks about risks, plays into that decision. My job is to use my experience and expertise to help people make the decision that is best for them.
A patient with risk factors for heart disease can decide to lower that risk by taking a statin, or he can decide the absolute risk reduction isn’t worth taking a pill or possibly experiencing the side effects.
The right answer in a medical decision is not what the doctor or guideline writer says, it’s what the informed patient feels is best for them. Doctors need to remember it is not they who swallow the chemical or have the catheter put in their heart.
The good news is that the broken informed consent of today represents a major opportunity to get closer to Right Care.
First, I think decision quality would make an excellent quality measure. A patient with an ICD should be able to answer a couple of simple questions as to why she received it and what the device does. We could measure decision quality after a procedure and pay doctors extra when patients understand the gamble they just made.
Another thing we could do is scrap the legalese in the informed consent and make it an accessible document (or video) that has legitimate comparisons of the multiple approaches. Imagine an informed consent before a stent in a patient with stable coronary artery disease that made it clear that the stent did not prevent heart attack or death, and, at three years, there would be no difference in chest pain.
(Don’t get mad. This is the evidence. And evidence belongs on the informed consent.)
Finally, informed consent should move to a different area and time. It’s not fair to sign people up on the day of the procedure when they lie flat in a hospital gown.
Right Care is when patients have the time and permission to ask their doctor the four basic questions.
I stand for better medical decisions. That is Right Care.
3 replies on “Right Care Action Week – Un-informed Consent”
Thanks for a great column! Patients could already have access to better, more accessible information — in the form of patient decision aids. There are more than 500 aids available, covering decisions ranging from whether or not a man should get a PSA test to knee replacement to carotid endarterectomy and stents vs medical management alone. Every hospital in America should have a program for acquiring aids and making them available to patients. Physicians and nurses, along with patients, should be demanding that decision aids be made available. That would make a great action for next October for RightCare Action Week.
Such important points, Dr. John. And I appreciate Shannon’s message, too: valuable resources like patient decision aids already exist to help patients and their health care providers decide on what ‘right care’ looks like.
But I’d bet my next dose of nitro spray that few of the millions of patients now on statins, for example, have ever even heard of a statin decision aid (particularly for primary prevention). Effective decision aids (e.g. from Mayo Clinic – https://statindecisionaid.mayoclinic.org/ – or from Vancouverâ€˜s Therapeutics Education Collaboration at the University of British Columbia – http://chd.bestsciencemedicine.com/calc2.html ) – are already available, yet how many physicians are using them routinely?
Docs blame lack of both time and financial incentive for this gap, and patients have long been educated by their docs to expect a physician to act, not chat. And sometimes, when physicians do chat, plain English is often not their language of choice. I’m reminded of the elegant older woman in one of my women’s heart health presentation audiences who raised her hand and asked: “Carolyn, my doctor says I have a ‘heart rhythm’ problem. What does that mean?” (Good Lord, how did she leave her cardiologist’s office without even the slightest clue about her own diagnosis? I can only imagine the quality of any informed consent discussion she may have ever had with a physician…)
I’m so glad to see you speaking out along with the Lown Institute’s Right Care Action Week. I hope your colleagues are listening.
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