12 February 2013

What do you want to know?

"I set it down as a fact that if all men knew what each said of the other, there would not be four friends in the world."
              —French mathematician Blaise Pascal
Pascal's quote reminds us that ignorance can sometimes be blissful.

How much should a patient be told about their medical condition? The knee-jerk reaction is to reply: "as much as possible." But as with most things, the truth is more complex.

For a couple of years as a kid I played Magic: the Gathering. It's a card game where you buy up cards at the local comic book store and then assemble your favorites into decks. Your cards attack and defend in various ways. You duel against other players, using a combination of luck, strategy, and the planning you put into assembling your deck. It was a fun game to play. It also proved quite lucrative for its manufacturers. Like lots of other kids, I trooped to the comic book shop to buy sets of cards, because sometimes thrown in with the junk and the mediocre ones were some rare cards that conferred some special advantage over an opponent.

Upon outgrowing my Magic phase, I sold all of my Magic cards to a middle school buddy for a grand total of $20. That is, except for one, which I set aside because I remembered hearing that it was rare and valuable. A few weeks ago, I was cleaning out my room and came across the card. For a moment I thought I should get on the computer to look up how much the card was worth. Then I decided it was probably garbage (what are the odds that anyone even plays Magic these days?), and I tossed it in the trash.

The other day, I spoke to someone who casually mentioned that he plays Magic. I told him that I had just thrown out my last card, and I asked him if it was actually rare. We looked online and found that it would sell on eBay for $150.

I couldn't help but beat myself up for tossing out the card. Why didn't I take a few moments to check its value? I tried to rationalize away my nagging feeling, but I still felt bummed. I could have put the cash towards some extra white coats, or some excellent tickets to the symphony.

Then I felt stupider still for ever asking my friend if the card was rare, for ever going online to check the card's value. Yes, perhaps by learning its true value I might have learned a life lesson, and I can adjust the way I clean my room in the future accordingly. But I'm convinced that I would have been happier never knowing that I had chucked $150 into the garbage.

A number of diseases are in some way avoidable, meaning that many patients end up second-guessing or regretting past decisions. I'm sure some of the patients I've seen dying of cirrhosis wish they had never picked up a can of beer, that some patients dying of lung cancer regret ever smoking a cigarette, that some trauma patients regret ever climbing onto a motorcycle.

But sometimes a disease's link to past behavior isn't obvious to the patient. For example, it's widely known that smoking is strongly linked to lung cancer. But did you know that bladder cancer is strongly linked as well? I doubt that most smokers are aware of that connection. If a former smoker comes in and is found to have widely metastatic and untreatable bladder cancer, should the doctor point out bladder cancer's link to smoking? Bear in mind that there's nothing the patient can do at that point to improve his prognosis. It's hard to take that sort of news, that you've probably caused your own undoing, in stride.

Sometimes, doctors perceive a link that the patient does not. Checking the blood type of multiple family members can expose that the dad did not actually father the child. In such cases, should the father be informed? In an interesting FRONTLINE interview, a doctor discusses a time that a husband-and-wife pair came in, both of them HIV-positive. Over the course of the visit, the doctor figured out that the husband must have known that he was HIV-positive for at least 10 years, but had hid it from his wife the whole time. The wife continued to have no idea. Privacy laws prevented the doctor from informing the wife that her husband had lied about his HIV status. Should the laws be changed?

As for the bladder cancer patient and the wife of the husband with AIDS, I believe that medical ethics dictates that the doctor should withhold the information.

An interesting concept in medical ethics is that the although the patient needs to be well-informed, some things should not be shared. Sometimes, full disclosure harms. This can be tough on doctors, as well, because they possess their patient's secrets, secrets that even the patient doesn't know. It is another counter-intuitive aspect of medicine, and another reason why this field truly is an art.