Shared decision making?

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Recently I read a blog by Dr. Ira Nash at the blog site, KevinMD, where Dr. Nash suggests that it behooves physicians to fully inform patients with carotid stenosis about the pros and cons of proposed treatment. This is in keeping with a general crusade to involve patients in so-called shared decision making.

Dr. Nash points out that “it is a truism that the outcomes of interest to the patient are not necessarily the outcomes that interest the physician, and neither set necessarily includes the outcomes for which reliable evidence exists.” This is especially relevant when one considers treatment for an asymptomatic carotid stenosis.

Dr. Russell H. Samson

Dr. Russell H. Samson

Depending on the point of view of either the physician or patient, the most important outcome may be long-term survival, prevention of cardiac events or the avoidance of short- or long-term stroke. On the other hand, a trumpet player or opera singer may be more concerned about a career-ending cranial nerve injury. Further, there still is considerable debate about the treatment of asymptomatic carotid stenosis.

I do not want to trivialize this important issue, but if we are to follow Dr. Nash’s directive, perhaps the following scenario could be an example of my future office consultations.

8 a.m.: “Mrs. Jones, our duplex scan has shown that you have an 80% stenosis of your carotid artery and we are concerned this may lead to a stroke. Oh, you want to know how we can tell it’s showing an 80% stenosis that can cause a stroke. Well, that’s complicated. It’s all about blood flow and the Circle of Willis. No, that’s not the roundabout where you had that traffic accident. It’s an anatomical structure in your brain. OK let me explain….”

8:45 a.m.: “So, that’s how it works. Some doctors believe that we should operate now and some believe we should wait until the blockage reaches 90%, and some even think we should not operate at all. You probably need to know how they come to those conclusions. OK, let’s see …. Well there were some studies such as NASCET, SAPPHIRE, and CREST and many others. No, Mrs. Jones, they have nothing to do with the stock market, jewelry and toothpaste!!! Yes, I know it’s very confusing even for me.”

9:50 a.m.: “That’s the problem with those studies. Some people think we should repeat them with patients getting statins and antiplatelet agents. What are statins? You read in the National Enquirer that thousands of patients died because of statins. Hmmm, that’s not really accurate.”

10:45 a.m.: “Yes, I have heard of carotid stents. Of course, I do them myself. You want to know why I’m not recommending one for you. Well, let’s see .… You are an 85-year old female with a type III aorta. Yes, that’s just like the drawing I made of your aortic arch. How do I know that’s what it looks like? You want to see for yourself? OK, come over to this monitor…”

1:10 p.m.: “You agree perhaps a carotid endarterectomy is best but you want to know if I use a shunt. Do you know what a shunt is? Your friend told you it’s a plastic tube that I put in your brain!”

2:14 p.m.: “You heard most surgeons are using a patch. Can your husband donate his leg vein? No that’s not a good idea. Why? Well ….”

2:45 p.m.: “You’re hungry? OK, let’s get a bite and resume at 3 p.m.”

3:00 p.m.: “You forgot what I told you and you want me to refresh. You’re kidding right? No? OK then…”

Certainly, this inane scenario should not happen. No patient needs such detailed information and no surgeon could provide such in-depth information. But proponents of shared decision making insist we make the patient an equal partner in treatment. The claim is that without such involvement patients would not make the right choices nor would they be fully committed to the therapy.

Thus we are faced with a dilemma. The benefit of CEA or CAS for asymptomatic carotid stenosis may be minimal in comparison to medical therapy alone. Yet based on the information we provide, patients are expected to make a decision on one regimen or another in spite of the complexity of the arguments. So, how do we discuss treatment options? How much information do we provide and on what data do we base this discussion?

Do we quote NASCET or some other trial? What about SAPPHIRE and CREST? Do we let them know that CREST II is in the works? Do we quote published results from Centers of Excellence or our own results, and, if so, how many of us have accurate data about our short-term results let alone long-term outcomes? Further, how do we avoid our own subjective bias in the discussion, and how do we phrase statistics? This is especially relevant in discussing stroke rates.

A surgeon may tell a patient that without surgery there is a 2% risk of stroke a year, whereas someone motivated toward medical therapy may rather state that there is a 98% likelihood that the patient will not have a stroke. Confusing? You bet!

As physicians and surgeons, we reach our conclusions after diligently evaluating the literature and our own clinical experience. Our judgment may take years to hone and may change as new developments occur, making it almost impossible to discuss options with a patient on a peer-to-peer level. It is therefore inappropriate to expect that we will be able to instruct the patient enough for them to make a truly educated decision. But in the spirit of “shared decision making,” we all should develop a simplified method of informing our patients so that they will be advised without becoming overly confused.

In my practice I make a point of discussing the controversy regarding asymptomatic carotid stenosis. I let them know that there are surgeons who operate for 60%, 70%, 80%,or not at all. I also try to instruct them on how difficult it is to be sure how tight the stenosis actually is. I discuss the difference between CEA and CAS and the pros and cons of each. I explain that many patients that we treat by CEA or CAS may never have needed the procedure, even if their carotid artery eventually occluded.

I tell them that over the years I believe I have helped prevent strokes but equally, some of the patients I treated may never have had a stroke even without CEA or CAS. And, of course, in trying to prevent strokes, I have caused them with my surgery. Lastly, I almost never tell patients what they should do, but leave the decision entirely up to them because they may be making the most important gamble of their lives, since the outcome of therapy is an odds game. By now you may be wondering how on earth any of my patients actually come to a decision. I am sure most patients would prefer that I make their choice easier by being more forceful in my recommendation. Unfortunately, their insecurity is the price they must pay for sharing in the decision-making process.

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