I am scheduled to have septoplasty and/or turbinate reduction in about a month. My ENT would like to surgically straighten my deviated septum and trim my turbinates back to their proper size so I can breathe normally through both nostrils. That would be a pleasure indeed, but I’m vacillating between letting him do both, one, or neither procedure.
The surgery will involve general anesthesia with (I presume) intubation, followed by what will likely be a pretty miserable week-long initial recovery period of sitting and sleeping upright while breathing through my mouth. I’ve never had any kind of surgery, and that—along with my fear of being unable to breathe—makes this a scary proposition. For breathing, I’ve always considered use of the mouth to be only a backup plan—not my primary technique with no additional backup—so this arrangement is highly unnerving. But some YouTubers who have had septoplasty promise that the throbbing headaches during that first week will provide a more than sufficient distraction from the mouth-breathing ordeal. Perfect.
By now you should be asking me, “Ron, this is prostate-proton blog. What’s up with the nose story?” Good question.
While contemplating what to do about my nasal issue I’m reminded that—deviated septum, prostate cancer, whatever—when we face choices about major medical treatment of any kind we need information and we have questions. I’ve been told more than once that on the bell curve of question asking, I fall firmly into the stratospheric range. Well, that’s okay. It’s my right and responsibility to ask questions, and there are multiple ways to obtain answers in this era of readily available information about everything—so why not.
Drawing the line
Ah, yes, but what if I don’t ask the right questions? What if I omit an important one? At least to some degree I must rely on my doctor to volunteer the information I should have, even if I don’t ask. But how much information should I have? How much do I need? Where should my doctor draw the line? Where should I?
I think we can easily agree that the line should be somewhere between telling me nothing and a giving me a full education sufficient to pass the USMLE® exam to become a practicing physician. I suppose each doctor’s tendency combined with each patient’s apparent need for information would determine exactly where their line should be drawn, case by case.
… the line should be somewhere between telling me nothing and a giving me a full education sufficient to pass the USMLE® exam to become a practicing physician.
However, it’s more complicated and that’s certainly an oversimplification. We need to ask not only how much information we need, but why and when we need it. Before we’ve had a procedure, we need to know only enough to decide whether we want to proceed. That begs the question: how much is enough?
Enough is enough
If everything goes as planned with no complications, we have little reason to look back and wonder whether we were sufficiently informed beforehand. At that point, who cares—it worked! It’s only when everything does not go exactly as we hoped that we begin wondering whether we had enough information in the first place.
If medical procedures had no risks, this would not be an issue. But every procedure has associated risks. At one extreme, there might be risks of theoretically possible negative consequences that have never been known to occur—yet. This would be like the risk of falling off a high-railed balcony from which nobody has ever fallen. Clearly possible, but not particularly worth worrying about. Maybe not even worth mentioning. Then again, maybe we’d become the first.
Not quite so extreme are those outcomes that have occurred and can therefore be measured in percentages. A one percent risk of this, a ten percent risk of that. We pay a lot of attention to those numbers. They will determine whether on balance a procedure seems worth the risk. It’s the infamous and daunting risk-reward dilemma, and it’s very personal. There’s no right or wrong answer to such choices, but choices must be made.
The two percent trap
Now let’s suppose we decided to undertake a therapy having a two percent risk of some specific negative outcome. Let’s assume we were informed about that risk, and felt that a ninety-eight percent likelihood of smooth sailing seemed reasonable and acceptable. So we give it a go.
Great, but what if we become part of the two percent? We knew it could happen, and because it did, we might berate ourselves for having made a bad decision. This would be a tragic double jeopardy: a negative outcome along with self-imposed guilt and remorse. A very raw deal, indeed.
Let’s take an even more extreme example. What if there is a scenario with such a small risk—let’s say a tenth of one percent—that it’s on the not-worth-mentioning side of the line. What if your doctor doesn’t mention it—maybe isn’t even aware of it—and you become part of that tiny group that defines the risk? In this case, some people would be angry with the doctor, but would that be fair?
With a nearly 100% chance of success, almost everyone would go for it …
In asking “why didn’t you tell me?” such a patient would be implying that had that risk been known, he or she would not have agreed to the procedure. Of course, that is almost certainly not the case. With a nearly 100% chance of success, almost everyone would go for it—even knowing there is a minuscule chance of things going awry in that manner.
To be not only fair and realistic, but also practical, we must concede that nobody—not our doctor, and not ourselves—can know or provide enough information to cover every conceivable scenario before we decide how to proceed. A line must be drawn, and some information will necessarily remain unmentioned. Even if the doctor went significantly beyond that line, we would reach the point of information overload and probably not remember some of it anyway.
Nevertheless, if a very low risk unmentioned outcome were to happen, that tiny tenth of a percent for us becomes one hundred percent. Would we wish we had known about it? Of course. Should it have been mentioned? Maybe. Maybe not.
There are only three possible scenarios following a medical procedure:
- Everything worked perfectly.
- There was an undesirable outcome you knew was possible.
- There was an undesirable outcome you were unaware could happen.
For #1, we’re totally happy campers. For #2, we can only shrug and say, “Oh well, that’s life.” But if it’s #3 we might get angry with ourselves, our doctor, or both. We might say we should have known. We would expect the doctor to have known, and we could demand to know why we weren’t warned. While such a reaction might be understandable, it would probably not be productive or helpful.
Digestible portions of information
Self-imposed guilt is unfair to ourselves. Blaming the doctor might also be unfair and unreasonable …
Self-imposed guilt is unfair to ourselves. Blaming the doctor might also be unfair and unreasonable, as is the expectation of medical omniscience. We have to make decisions based on a reasonable and digestible amount of information. We cannot consume all relevant information known to mankind, even if it’s somehow provided or offered.
It’s hard to draw our own line regarding when we know enough to intelligently choose a course of action. It is surely at least as difficult for our doctor to draw that line on our behalf. If things go well, congratulate yourself and give your doctor a big thumbs up. If not, remember that a line had to be drawn somewhere.
I must slightly digress to be very clear about one possible point of confusion. This discussion is about how much information we need to decide which—if any—therapy we want, based on success rates and risks of side effects. It is not about which therapies should be on the initial list of options to consider. Omitting any major therapy—in the case of cancer that would certainly include surgery, conventional radiation, and proton therapy—from the initial list is wrong, deceptive, and does not serve the patient. It could be likened to not telling the commander in chief about all weaponry available to win a war. Only by knowing which weapons are available can we evaluate the risks and proceed in an informed, intelligent manner.
Guilt and blame
In the process of evaluating our options, too much information is as useless as too little. The trick is to figure out when enough is enough, make a decision, move on, and hope for the best. Chances are you’ll do well, but if not—hey, that’s life. Don’t relive or second-guess your decision. That ship has sailed, and it’s worse than worthless to waste your limited time or energy on pointless guilt or blame. Life is too short for that.
The trick is to figure out when enough is enough, make a decision, move on, and hope for the best. Chances are you’ll do well …
Finally, you might ask why this was worth writing about. Well, of course I wrote it for you, but also for me. So far, I’ve enjoyed excellent results from the proton therapy I had almost six years ago for my prostate cancer, but I can’t predict the future. Soon I will probably also have something done to help me breathe better, but there are risks I must weigh. If my results in either case should ever become less than perfect, I will reread this article and hope it helps me avoid going down the dismal drain of guilt and blame.
Email me here to let me know where you draw your line.