They sat nervously with their son in the doctor's office, wondering why they were there. John was, after all, the picture of health and had just received a scholarship to Stanford University to play soccer. His mother and father had been to every soccer match through his formative years, enduring the travel schedule with its weekends away from home, long hours, horrible weather. John was staring at his iPhone, his mother clutching a Kleenex. John's father stared out the window. It was raining.
The door opened.
"Hello, I'm Dr. Kiljoy. They asked me to see your son about a finding on his EKG."
"Hello," they said back.
"As you know, we've been looking into EKG's in athletes because we have suspected for some time that an EKG will help us better detect students who might be at risk for sudden cardiac death while participating in sports. You know, even if we can prevent one death in these young people, it would be worth it. None of us want a young person to die. That New York Times article yesterday... dang... with that crying family and all right there at the top... poor boy collapsed, people had no clue what happened at first, people thought he overheated, then waited... only later did they find that AED. Then it didn't work 'cause the battery was dead. So sad! We really are trying to prevent that from ever happening. Seriously. Sad as hell. And to think we could have caught this if that teenager had just had an EKG..."
"Yes, of course!" said John's mother. "I'm SO glad you did this! We'll be so reassured to know that John's going to be okay. "
A pause filled the room...
"He IS going to be okay, isn't he?" she asked.
"Well, Mrs Smith, we're not sure, we have to run some other tests. You see he had a slight elevation to his ST segments in these leads here, see? Then look at his heart rate, it's so slow! And that voltage here, it's more than we usually see... It's probably okay, but I'm going to order an echo to look at his chamber sizes."
"Okay..."
"And a then I'm going to have one of our EP people see him to make sure he doesn't have a congenital ion channel disorder..."
"A what?"
"A channelopathy - a genetic defect of some ion channels in his heart - the most common form is called Brudaga Syndrome..."
"How do you spell that?" She waited with pen and paper to jot it down...
"B-R-U-G-A-D-A. Look, he's probably okay, be we want to be absolutely sure, especially with that ST segment elevation in those leads... We'll also check a stress test to make sure his heart rate comes up appropriately with exercise and that there aren't any funny EKG changes with exercise that might suggest an anomalous coronary artery - I've seen three people die like a dog with that one!"
"How often does that happen?" she asked.
"Well, it's pretty uncommon, but if it's there, sometimes we have to do open heart surgery to reimplant it so that it won't get pinched between the pulmonary artery and aorta when he exercises."
"But he's never had a problem! And no one has ever died suddenly in our family - ever!"
"Mrs. Smith. Remember why we're doing this: John's safety. This is all about John's safety."
"And if you find something in all these tests, then what?"
"Well, he wouldn't be able to play soccer."
John's eyes suddenly lift from his cell phone. "What did you say?" he asked.
"You won't be able to play soccer," Dr. Kiljoy repeated.
"Mom, what the f#$*!? If I don't play soccer, I don't go to Stanford. If I don't go to Stanford, I'll never play soccer again! Are you serious?"
The father, sensing his son's concern, returns to the room from his window transcendental meditation.
"Son, let's just get the tests. Your mother's concerned."
"Mom's concerned? What the hell do you mean 'Mom's concerned?' What about me? I never wanted to get this frickin' EKG anyway! Look, I'm FINE. I never so much as farted wrong. We have no family history of heart disease. I've never felt my heart race, I've never passed out, I'm faster than everyone else on my team and we just won the State Championship! How's THAT for a stress test? I've worked my ass off for YEARS to get this scholarship. And now, just because of this EKG with bullshit findings that don't pertain to kids my age they're going to do a million tests just to be sure? Seriously? Honestly Dad, you gotta be kidding me... How much is all this gonna cost, huh? And maybe I'll lose my scholarship, too? How much is THAT worth?"
"John, honey, it's for your safety," his mother whispers, tears streaming down her cheeks. "We love you so. We just don't want anything bad to happen to you...."
"Your Mom's right, John. We just want to be sure... really....", Dr. Kiljoy continued.
John looked up at Dr. Kiljoy, and said slowly, painfully, with tears in his eyes:
"Doctor, f*&% you."
-Wes
P.S.: For more, please see Dr. John M's take on the New York Times's abysmal reporting on this issue.
Well written, Dr. Wes!
ReplyDeleteHow about the hypothetical athlete signing an affidavit releasing everyone of responsibility in case of a bad outcome? Then skip all or some of the testing. 'Course, he'd have to be 18 to sign.
-Steve
Excellent piece Wes!
ReplyDeleteSteve - I like your thought - but makes me wonder then WHY test in the first place? If the athlete wants to play regardless of what abnormality is found - then wouldn't they be better off not knowing (rather than knowing and signing the affidavit releasing others of responsibility - but always thinking in the back of his/her mind that they might drop at any moment ... ).
Maybe screening ought to be offered with full informed consent (including statistical chance of sudden death during athletics) WITH a right to accept or refuse such screening ... I think I'd prefer not to know.
Again - EXCELLENT piece Wes!
When do we start dying? . . . . . . . . . . The moment we are born.
ReplyDeleteForget being wrapped in a protective medical cocoon, and let people enjoy their lives.
I truly feel sorry for the families who have lost young ones, but at some point, we have to realize just being alive is risky.
In our area, because someone scraped an elbow and broke a finger on a playground, the playgrounds have been dumbed down so far that there is no challenge, and no point. Furthering the dumb down is having them all redesigned for everyone with a handicap. My daughter has a handicap, and prior to being dumbed down, the playgrounds were the places she learned how her body works in space, and how to figure ways around her handicap and built her confidence. No more challenge, no more learning.
It's a different, but parallel conundrum.
Sorry, Dr. Wes, if John, the teenaged son, can't discuss the situation with his parents and the doctor without using the coarse grunts of an incoherent brute, then he shouldn't bother going to university, on an athletic scholarship or otherwise.
ReplyDeleteHe'll only end up with a massive student loan, and insufficient income to pay it off.
His parents have failed to raise a reasoning human being.
The linked article from Dr. John M. was excellent. I think it is pretty easy to send comments into the NYT via email. Do you know if Dr. M has done so? Will you post how much your office charges for an EKG? I thought Dr. M's estimate of $100 was a little lite.
ReplyDeleteThis is a totally legitimate point of view. We've screened 30,000 kids with limited echos and have experienced this first hand. It's also the reason why we don't screen with just an EKG, which even if applied and interpreted correctly, misses many of the SCD conditions. We do a fully directed echocardiogram tailored for youth and athletes with EKG plus AHA guidelines and family history to avoid false positives and increase sensitivity and specificity. If there's a problem, we know it's real.
ReplyDeleteDr. Wes, I'd love to talk to you. More about us here (www.sportlinkheart.com)
-Joel DeJong
Sportlink Founder
joel@sportlinkheart.com
Doc
ReplyDeleteIt's midnight, 5/3 and the comments are still open on the NYT article. Cmon! Hold their feet to the fire!
By the way,
ReplyDeleteConsensus on the $1400 price tag. Most everyone has an EKG at $100 or less.
That's some nice fiction. In reality, after an abnormal EKG, the patient is told that there are often false positives and an echo is scheduled. The patient leaves know that next test is purely a precautionary measure and that they are probably fine. You're phoney scenario is akin to an ER doc telling a person with what's probably indigestion that he might be having a heart attack and should say goodbye to his family because he might never leave the hospital.
ReplyDeleteMany congenital abnormalities, including ones that don't affect sport and really don't affect the patient at all until their 50s or later, are first caught on echos after EKG, sometimes even after false positive EKGs.
Anony 12:27-
ReplyDeleteYou're phoney scenario is akin to an ER doc telling a person with what's probably indigestion that he might be having a heart attack and should say goodbye to his family because he might never leave the hospital.
Glad you noted this was a phoney scenario. We have rules that prevent us from mentioning real ones, Anony. But rest assured, each of us tasked with screening athletes has encountered similar situations.
But lets be clear, anyone who suggests that an expensive echocardiogram thrust on the masses is a good "screening test" is out of touch with the cost of health care today. How many billions should we spend on this project just to keep our low-incident-of-disease kids absolutely safe? And when do the students being screened get to have a say in all of this? Should doctors thrust their beliefs on the masses as mandates despite what our guidelines recommend?
These are not simple issues when "screening tests" are to be considered for large generally healthy populations. Remember, trying to find a rare disease in a population with a low incidence of disease invariably results in large false positive tests, irrespective of the form of test. And even our fanciest tests have limitations.
For instance, when reading an echo, how thick should an LV wall be before we consider it an athlete's heart to be pathologically hypertrophic? 13mm, 14mm, 15mm, more? Suddenly, not only the sensitivity but the specificity of the echo wall thickness in detecting even simple hypertrophy vs hypertrophic cardiomyopathy is not so clear.
Sometimes in medicine, the road to hell is paved with good intentions. I'm okay if people want to study this issue as a trial, but having such a one-sided recommendation for EKG screening published in a major mainstreat media newspaper that fails to these downsides is just shoddy reporting.
Although educated enough to know the scenario is phoney, I just sat through a eerily similar appointment with my top athlete 15 year old daughter yesterday. Thank you dr. wes...not only did it provide some comic relief, I am realizing we are not alone, and her competitive nature may not be over just yet.
ReplyDelete