Thursday, October 20, 2005

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.


Blogger fanatic cook said...

Well, I thought...
And I thought, nah, can't be. So I pasted it into about 8 online medical dictionaries and they all returned nothing. And I thought, nah, isn't. Then I read a case study.
Dear blessed mary of the virgins.

10/21/2005 12:09:00 PM  
Anonymous Candy said...

I have my own cancer horror story to relate, though it's not quite as visceral as the case with the hemicorpectomy.

Anyway, the father of a friend of mine had been feeling sick for a little while, with a nagging cough that progressed to shortness of breath and coughing up bloody phlegm. Went to the doctor, who listened to his chest and prescribed antibiotics.

The antibiotics helped a little, but the bloody phlegm never really cleared up.

He went back a few more times, and each time they gave him antibiotics, different ones each time. He eventually asked for an X-ray, but the doctor assured him he didn't need one. They did, however, eventually give him an MRI (though WHY an MRI instead of an X-ray I have no idea, since aren't MRIs more expensive?). The MRI apparently didn't show anything unusual going on except some inflammation in the lungs.

This went on for THREE YEARS, with the poor guy going back periodically for more antibiotics. My friend's dad was a very timid soul, and I won't tell you how much it took out of him to ask for an X-ray after the abx failed.

So yeah, after three years, he got tired of the runaround, and finally, FINALLY got a second opinion. His cough had gotten a lot worse, and the tight, painful feeling in his chest was now constant. The doctor he went to was horrified that he hadn't been given an X-ray, and scheduled him for one right away.

Cancer. All over his fucking chest cavity. It had started in his lungs but it had spread, boy had it spread.

This doctor asked for his old MRI charts, and guess what? It HADN'T been clean. There were apparently some pretty clear indicators of Shitty Things Happening that the previous hospital had completely missed.

They started aggressive chemotherapy right away, but it didn't help. A few months later, my friend was fatherless.

The original hospital is part of a huge, nation-wide provider of health services, and they advertise on network TV, trying to present themselves as cuddly and innovative and caring and attentive. I still get angry every time I see those ads.

Anyway, I guess the moral of THIS particular story is: Get a second opinion--hell, a third one--if you have a suspicion that you're not getting the whole picture. And don't wait.

But then that's easier said than done for people without health insurance, of course, or people who have crappy, limited coverage.

10/21/2005 12:42:00 PM  
Blogger Douglas Hoffman said...

An all too familiar story, Candy. I think there are doctors out there who refuse to believe in such a thing as illness.

I hope your friend's family sued. I'm not a big fan of frivolous malpractice suits, but this one sure ain't frivolous.

As for me, hemoptysis (bloody cough) means instant chest X-ray. When docs send people to me for hemoptysis (why an ENT? Cuz they want to exclude the nose as the source of the blood) the first question out of my mouth is, "Have you had a chest X-ray yet?" My second is usually: "Have you seen a pulmonologist?"

Hard to believe that these things happen, but they do.

10/21/2005 02:22:00 PM  
Blogger Kate R said...

Since we're all doing it. . .I had a 29-year-old friend who'd been complaining for months that he was dizzy. His doctor said he had an inner ear infection and told him to take dramamine.

He finally showed up at an ER stumbling and with blurred speech. The staff ignored him because they thought he was drunk. I think they ruled out diabetes and tried to send him home but he wouldn't leave.

Turned out to have some sort of huge brain cancer that usually shows up in kids. He died within a few months.

10/21/2005 03:10:00 PM  
Blogger mm said...

Okay, what the hell... My 30 year old cousin jumped out of bed one morning and broke her femur. The doctors went nuts - apparently the femur of a healthy young woman doesn't break unless it's been hit by a truck. Ran a bunch of tests right away and sure enough she had a tumour, bone cancer. Flew her back to Toronto, where she immediately underwent chemo to shrink the tumour, then surgery to remove a section of bone, replace it with a steel rod, replace the kneecap, remove the muscle and skin above the tumour location and replace it with muscle from her back, skin graft from her behind. Then back for more chemo - but her prognosis is very, very good.

Not all doctors drop the ball. Thank goodness.

10/21/2005 05:49:00 PM  
Blogger Douglas Hoffman said...

Most of the time we don't drop the ball, but we all make mistakes.

We -- I -- hope we don't make any mistakes about the big things.

10/21/2005 07:10:00 PM  

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