Family of 19-Year-Old Ignored By Doctors For ‘Googling’ Symptoms Get Apology For Her Death

MSN News ^ | 6/19

[nickcarraway]

It's the worst kind of cautionary tale in medicine: a tragic death that may have been prevented if only doctors had been willing to listen to their patient's concerns.

But this one carries an particularly 21st century twist to it: Doctors told 19-year-old Bronte Doyne and her family to "stop Googling" her symptoms after they brought up the possibility that her rare liver cancer had returned. By the time she was readmitted to the hospital in March of 2013, it was already too late and she died ten days later on March 23, only 16 months removed from the day she first sought treatment for suspected appendicitis. Now two years later, the hospital that managed her care is finally formally apologizing to her family for their fatal lapse in communication.

As the Nottingham Post reports, Bronte was a vibrant 18-year-old girl who received horrifying news in 2011 when she was told that her stomach pain was actually caused by fibrolamellar hepatocellular carcinoma, a rare cancer with no more than 200 cases diagnosed worldwide annually. Surgeons removed part of her liver, and the doctors were confident that she would recover.

But as diary entries released to the Nottingham Post by her mother, Lorraine Doyne, reveal, Bronte wasn’t getting any better. "Feeling sick for months now. Tired of this feeling crap. Hospital not worried so trying to get on with it," she wrote in one such entry in November 2012.

Attempts to get doctors to pay attention to her ailing health fell on deaf ears, as Bronte and her family were ignored when they inquired about the chances of her cancer returning, relying on information about the disease from the Fibrolamellar Cancer Foundation.

"It's not just some pathetic website on Google, it's been endorsed by the White House in publications, and was

[a fool in paradise]

Rationing, ages for pre-screening have been raised as well.

[normbal]

Tragic, but here’s the reality of the situation.

I had a patient about ten years back, first time I’d ever seen her on my panel. She came in to clinic on a Monday morning with a double handful of lab results and emergency department notes.

She and her husband (also with her) spent most of the day before in the ER for a headache.

Her medical history included: migraine (I COULD stop right there, but for those of you with medical backgrounds you’ll appreciate the rest more than most lay people will), asthma, allergies (just about everything), chronic sinusitis, irritable bowel, anxiety disorder and, if the aforementioned weren’t enough, fibromyalgia.

ER treated her migraine.

So why was I seeing her - with her attentive spouse?

Well, on page 12 or so, right there, highlighted in fluorescent yellow with a lab value. Her calcium level was - if I recall correctly - 10.3.

Normal lab values, right there on the page, were something like 9.5 to 10.2.

So her concern was? She looked it up on the internet. High calcium levels can mean ovarian cancer.

I admit, I laughed a little. “Internet”?

I didn’t go into the statistical problems (fake positives, negatives, standard variations) in looking at a single lab value out of the dozens run at her ER visit, something we in medicine deal with on a daily basis, one of the main reasons it’s foolish for non-medical people to order their own labs online and attempt to make sense of them.

Then I reviewed her medication list, asked her to NOT take the calcium tablet for a day or two and repeat the test.

Outcome? Normal. The test, not the patient.

The patient and her spouse went on to file a complaint with my parent organization - I was “arrogant,” “acting like God” “I disregarded the patient’s concerns,” and more. Folie au dieux. Or tre, as the patient representative got sucked into this too.

Sure, I was guilty as charged. I “disregarded” the patient’s concerns because they were bullish*t.

Had the patient had four years of undergraduate premedical education, four years of medical school, four years of residency in family or internal medicine and 10 years of actual practice, I might have taken her concern more seriously.

But I wasn’t the only one, it turned out, as this particular patient had made a habit of complaints and alienating the medical staff, I was just the next in line.

But this case? This girl with PRIOR cancer? You take it as seriously as you can no matter the source of concern, order the tests, run the ultrasound, whatever it takes. Someone screwed up big time.

[pgkdan]

This is British NHC...she had cancer, therefore she’s lucky she received any care at all.