much like jack nicholson said to tom cruise in the movie ‘a few good men’, I sometimes  wonder if providers feel that patients/families can’t handle the truth…

Because I often witness them describing very serious issues, such as a terminal diagnosis or the potential burdens of high-risk procedures/treatments in ways that obscure their true nature. Whether it’s well-meaning ‘sugar-coating’, or that the providers sincerely don’t realize their lack of directness and clarity- it’s nonetheless problematic.  Particularly when complications arise or if the burdens of treatment become more difficult than the patient/family expected, this inexact communication becomes especially problematic.

Mrs G, 78 yrs old, thought she was just slowing down from age.

But her worsening shortness of breath with minimal exertion was actually a sign of 3-vessel coronary artery disease, and coronary artery bypass grafting(CABG) was the recommended treatment.

Although she had been quite active and independent, and her family considered her a ‘young’ 78, Mrs G was physiologically an ‘old’ 78.   She had multiple co-morbidities including:  longstanding diabetes(under so-so control), hypertension, and chronic kidney disease.  While the cardiac surgeons explained that she was at “higher than normal” risk for the procedure, and described the typical list of risks, Mrs G and her family agreed to proceed with CABG.  She had a rocky postop course, with multiple complications.  But after a 6 week hospitalization (much longer than typical for this procedure) a now very deconditioned Mrs G was discharged to a skilled nursing facility for rehabilitation.  And then, another serious complication developed- a sternal wound infection- requiring re-hospitalization, multiple operations and icu care.   A lot for any 78yr old body to handle.

Her post-operative course continued to be difficult.  More complications developed and overall, she just was not improving.  One step forward would be followed by 2 steps backward.  What surprised me most when talking with her and her family, was that despite being told the potential risks of the initial CABG operation, they really didn’t understand what that meant.  And they really didn’t understand the implications of the subsequent sternal wound infection- a devastating complication from which she ultimately might not recover. The family kept repeating that the surgeon said “everything would be fine”.  But it wasn’t.  And eventually, Mrs G died.

Even weeks after her death, Mrs G’s family was still suffering and struggling to understand what happened and why.

And they were angry.

While I have no doubt that Mrs G’s surgeon feels he honestly tried to relay the high-risk nature of the procedure(s), as I noted above, I’ve seen many interactions where the provider talks about  a very serious condition or high risk intervention in ways that do not connote the true reality of the situation. While this may come from a place of compassion, it likely demonstrates a lack of insight into how nebulous our words can be. Because of human nature and that all-important HOPE lurking in the background, this lack of clarity can be responsible for unrealistic expectations which can inadvertently lead to pain and suffering for patients and family.

One way to avoid this, is to go in the opposite direction.  One of my favorite attendings practiced what I call the ‘henny penny’ approach.

She routinely warned her patients/families that the ‘sky was falling’– meaning she emphasized(maybe over-emphasized) the potential burdens very clearly, almost to the extent that they thought complications were an expected part of the post-operative process. So, if something didn’t go smoothly, it was seen as normal.  From a psychological perspective, isn’t it better to have something go easier than expected, rather than much worse?  And when things went smoothly(which it typically did, she was a very good surgeon), it made her a hero.

But, this can be a bit problematic as well.

There is another way.

A team at Univ of Wisconsin have developed a wonderful tool- called “Best Case Worst Case” that can really help.  And (my opinion) this tool really takes informed consent to a more effective level- so I hope you will take the few minutes to watch it.

Instead of listing off a bunch of potential complications (‘bleeding, infection, poor healing…..’), the provider tells a story about potential benefits/burdens of treatment options in a manner that is understandable and relatable to the unique patient in front of you.

By bringing it to the personal, it makes it more real and relatable.

I learned about this tool at a palliative medicine meeting and then we then formed small groups and tried it out among ourselves.  As someone who detests role playing, this was memorable.  I played the surgeon (appropriate) talking to a family about a potential high risk operation.  I went through and discussed the potential best case/worst case possibilities, in the fashion described- not just the risks as a list, but how the risks translate into reality for the patient.

The power of the Best case/Worst case tool comes from the combination of telling a story and then codifying it by writing it down in the shorthand figure.  When I placed the X at the spot where I felt the patient was going to land (which was closer to the worst case), our group collectively paused and there was a noticeable change in our group’s demeanor. It was as if, at that moment, we were no longer in the theoretical,  we were in reality, and it wasn’t so good.  The ability of HOPE and/or denial to overshadow the true risks, was now dampened down allowing the true outcome possibilities to be understood.  And this is critical for true informed consent.

I can’t help but wonder what would have happened if Mrs G’s surgeon had used this technique to discuss her planned operation.  Likely the same decision would have been made and sadly, the same outcome would have occurred.  But my belief is that she and her family would have been much better prepared for her subsequent hospital course and outcome, thereby lessening all of their suffering,  and allowing a less painful and complicated grieving process.