Patient beware

Last week, I wrote about the anguish of making life-or-death health care decisions for a child (Sorrow in the trenches). As part of that discussion, I used hemicorpectomy as an example of an operation so heinous no one in their right mind would say yes, sign me up — unless the only other option were the death of one’s child.

I encourage you not to google ‘hemicorpectomy’. Hell, you’re all writers (or, at the very least, intelligent readers). You can figure it out. Trust me, you don’t want the details.

At lunch today, I checked Sitemeter to see who was visiting my blog, and surprisingly enough two people found me by searching ‘hemicorpectomy’. I followed this back to the Google search page, where a link to an Annals of Thoracic Surgery article caught my eye. I clicked on it, read the abstract, and wanted to spew.

Yeah, I’m dumb enough to think, “Hey, I’m a doctor, I can read anything.” But this . . . oh, man. A seventeen-year-old boy underwent a high hemicorpectomy for what turned out to be a malignancy best treated by chemotherapy:

“No preoperative tissue diagnostic endeavor was made. Final pathologic diagnosis showed this tumor to be Ewing’s sarcoma. This communication alerts the thoracic surgeon to the need for definitive diagnosis of posterior mediastinal masses with vertebral body involvement, particularly in children. Induction chemotherapy is the accepted standard of management of these sarcomas. ^“

Translation: this boy’s doctors did not biopsy the tumor prior to making the decision to operate. After the operation, they learned that this was a type of tumor best treated by chemotherapy. Conclusion: you should have a definitive, biopsy-proven diagnosis before proceeding with surgery.

Let me be very clear about this. I’m not a thoracic surgeon. I can’t begin to guess at the surgeon’s thought processes leading up to the decision to cut. For all I know, the outcome (Ewing’s sarcoma) was an extraordinary rarity, a one in a million shot. I can imagine comparable scenarios from my own field, but how comparable are they, really? Do I have any right to pass judgment here?

No. I don’t. I’ll let you guess what was going through my head, and I’ll move on to my main point:

Patient beware.

Once upon a time, doctors called the shots in all treatment decisions. You ignored your doctor’s advice at your peril, and God help you if you questioned his decision.

Nowadays, so we’re told, treatment decisions result from an open discussion between doctor and patient. The doctor provides information regarding the various treatment options, including a discussion of the risks and benefits of each. Armed with this knowledge, the patient makes the choice which feels right to him.

In reality, the doctor often knows (or thinks he knows) what’s best for his patient, and can bias the discussion so as to convince the patient to make the ‘right’ decision.

This isn’t always a bad thing. Sometimes we really do know what’s best . . . um, based on available information. Within the limits of current treatment options. Knowing full well that no one can predict the future, and that what’s best for the first 99 patients might well be lethal for number 100.

Once again: Patient beware.

No, you don’t have to freak out every time a doctor puts you on antibiotics. Or, do you? How badly can patients get nailed by relatively innocent treatment decisions?

At one time, docs handed out estrogen pills to post-menopausal women without a second thought. Now we know better. The history of medicine is full of such reversals.

You could go mad worrying about what might happen. Great example: at least once a month, a patient will return for followup and say, “I didn’t fill that prescription. I took one look at the side effects and said, ‘no way.'” Never mind that those side effects are rare. Never mind that the patient took at least some risk by not treating his condition.

Guess what? No matter what you do, there are risks. Choose your poison.

Yes, you can get nailed by a single pill. Swallow it and your life may change forever. Is this likely? Of course not. Should you lose sleep over it? Probably not.

It’s a question of relative risk. Check out this webpage, wherein the risk of shark attack is compared to several other things (lightning fatalities, bicycle-related fatalities, and so forth). See how your predictions match up with reality.

Next time you swallow that tab of penicillin, you’re not likely to die or experience life-changing illness. Same goes for minor surgical procedures.

What about open heart surgery? Cardiac catheterization?

It starts getting messy.

High stakes = high emotion.

High emotion = Clouded decision-making capabilities.

Clouded decision-making capabilities = increased chance the patient will defer the decision to his doctor.

What does this mean? When it comes to minor decisions, many patients will question and quibble. But when it comes to the big stuff, such patients will look their doctor in the eye and say, “What do you think I should do?”

That’s right: when it matters most, many patients will try to abdicate all responsibility for their care. And some doctors will let them.

Think of that Annals of Thoracic Surgery case. What if the parents had given the surgeon the third degree? “This sounds pretty extreme. Is this really the only treatment option? Huh — what — chemo and radiation? What about that? Wait, how do you know surgery is our only option?”

For God’s sake, people. Ask questions. The scarier the situation, the more questions you should ask. ASK. If the answers aren’t clear, KEEP ASKING. Still not clear? Get a second opinion. Do the options still suck? Go to a university hospital and get a second opinion.

Yes, sometimes second opinions delay care and lead to a worsened outcome. Sometimes you have to trust your instincts and go with the first doc who offers treatment. But you can still ask questions. Ask, ask, and keep asking.

I wanted to write something fun this evening. I really did.

Perhaps you’re thinking, “This would never happen to me. I would never be this dumb.”

I hope you’re right.

D.