Why I've Changed My Mind About Shared Decision-Making

My views on shared decision-making have changed.

In years past, I embraced, somewhat religiously, the idea that nearly all medical decisions ought to be shared. Who could argue against giving patients a major say in their care?

The main reason for my change in thinking is that shared decision-making is too often used as an excuse for dubious care.

Another factor is that medicine has grown exponentially more complex. This renders the notion of shared decision-making too simplistic. Now a retired general practitioner, Richard Lehman, MD, introduced the concept of a shared understanding of medicine. This phrase may sound similar to shared decision-making, but it goes much further. I will make the case that this broader approach is what is required in today’s healthcare.

Common Misuses of Shared Decision-Making

ICD implantation: Recently on Twitter, a doctor presented a case of a very old person with high-risk cardiac features; the question was whether anyone would implant a defibrillator. Nearly all the responses were no.

The part that bothered me was that some doctors suggested using shared decision-making, assuming that after the patient heard the facts, he would decline the defibrillator.

This is wrong thinking. And it's all too common.

The problem is that 9 out of 10 patients might decline the defibrillator, but 1 may want it implanted—which would then force doctors to perform an invasive and wrong procedure. (I had a case like this in my younger days.)

While many medical decisions are chock full of uncertainty, others have a right and wrong path. In these situations, shared decision-making is a terrible idea. The right approach is not to offer subpar therapy.

Of course, the availability of many more therapies, the incentive structure to use them, and the cultural expectation that there is always something to do make this notion harder to implement.

In-hospital CPR: Another example where shared decision-making can fail is in the use of cardiopulmonary resuscitation (CPR) during a hospital admission.

When coronary care units came to be decades ago, rapid defibrillation of ventricular fibrillation (VF) after myocardial infarction (MI) was life-saving, and often life-prolonging.

Now, though, CPR is often used in patients dying not of post-MI VF but of progressive organ failure. It makes no sense to perform rib-breaking chest compressions, followed by intubation and/or shocks, in elderly patients dying of multiorgan failure.

CPR is an invasive medical intervention, and sharing the decision to use this therapy in patients for whom it offers only harm breaks our oath to "first do no harm." Of course, I understand the logistic legal constraints. But the correct medical decision is not to offer this therapy to people in whom it will have no benefit.

First-line ablation for athletes with AF: I recently debated the use of first-line ablation in nonprofessional athletes with atrial fibrillation (AF).

AF is hard to treat in athletes because they do not tolerate most AF medicines and they don’t like to reduce training. My opponent argued that AF ablation was better than drugs and relatively safe. He then invoked shared decision-making: let the patient decide.

There’s an argument about drug vs ablation efficacy and the transient nature of AF, but my main rebuttal was that shared decision-making was problematic because of the chagrin factor. AF in an athlete is a nuisance, but it is rarely dangerous. AF ablation, however, comes with serious risks.

Alvan Feinstein, MD, made the case that medical decisions usually have an active and a passive path. Eventually, a patient and a doctor select an option and the result will be evaluated in hindsight. His summation:

Since the relative magnitudes of chagrin will differ for different types of wrong results, a customary clinical strategy is to choose the option whose wrong result will cause the least chagrin.

AF ablation can cause stroke, cardiac perforation, or esophageal damage, each of which can lead to death. There is obviously far more chagrin with a wrong result from early AF ablation.

The correct answer, therefore, is not to leave it up the patient but to recommend a month or so of detraining and waiting. Then if you ablate and have a complication, there is less chagrin. Our job is not to allow patients to choose a potentially harmful procedure without trying less risky therapy first.

We Struggle to Understand the Complexity of Medicine

From the standpoint of the Centers for Medicare & Medicaid Services, a major payor in U.S. healthcare, showing a patient a decision aid equates to shared decision-making. While this is obviously preposterous, even the typical definition of shared decision-making as a meeting of experts is underwhelming because we are hardly expert in predicting the future, and patients’ preferences often change once they better understand what medicine can and cannot do for their condition.

The reason I like Lehman’s shared-understanding-of-medicine idea is that it incorporates more than patient preferences and evidence. Lehman speaks not only of sharing an understanding with patients but also with colleagues and the public at large, to help change cultural expectations or norms of what can and cannot be accomplished at the bedside.

Take anticoagulation decisions in AF. As Gene Quinn, MD, and coauthors have shown, we have no clear understanding of the untreated stroke risk, and no one knows how much AF warrants anticoagulation, which comes with serious risks. This means that there is vast uncertainty in many of these decisions.

Our profession doesn't seem to understand this concept. We often say that anticoagulation is underused in patients with AF, but we also have a class I guideline recommendation for shared decision-making. If you want shared decision-making, you cannot say there is underuse of any treatment.

A position more consistent with a shared understanding would be that for extreme cases—post-AF–related stroke or permanent AF in a patient with multiple risk factors—there is a right answer: use anticoagulation. But for most anticoagulation decisions there is uncertainty.

Conclusions

We should be leery of a simplistic default to shared decision-making. Clinicians are trusted advisors, and we should advise and even actively protect our patients from harm. You can call this paternalistic if you must, but I call it good doctoring.

The massive progress in medicine has changed one of our main challenges from how do we treat this problem to should we treat this problem.

A truly shared understanding of medicine would lead us to new norms. One would be that no clinician should offer a therapy with more harm than benefit, and the other would be that for many medical decisions, we admit openly that we do not know the best choice.

John Mandrola practices cardiac electrophysiology in Louisville, Kentucky, and is a writer and podcaster for Medscape. He espouses a conservative approach to medical practice. He participates in clinical research and writes often about the state of medical evidence.

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