What my 72-hour experience with Stanford Health Care tells about gaps in care and the kindness of strangers

This post has to begin with a giant disclaimer: I can’t claim any of the objectivity and neutrality that most journalists do when writing about a subject. But what I hope is that my experience can show the need for better diagnostic testing and that doctors sometimes should understand that a patient lacking in medical training can be right even in the face of immediate evidence to the contrary.

But first more on the disclaimer.

When Stanford University accepted my brother’s undergraduate application with a no-loan, full financial aid to boot in 1992, it changed the trajectory of both our lives who were born and raised in Kolkata, India. Three years hence my first trip to the U.S. as a tourist was spent exclusively in his senior dorm. Later, I married a Stanford undergrad friend of my brother’s who I met on that trip. The land of the free became home.

That connection to this West Coast institution has only grown stronger over the years. I donate a nominal amount annually to the school of medicine through the alumni network, which includes spouses. Since last year, Stanford Health Care is helping a family member navigate a battle with life itself. It is also where I go when I need to be treated for any malady.

Which is what I needed last week, because it seemed as if I was being taken back to a miserable few days in 2007. At the time, I had to be hospitalized in Belgium with acute tonsillitis. I couldn’t talk, eating food felt likes swallowing stones and doctors decided it would be risky to treat me as an outpatient as my airways could get blocked during sleep and admitted me. When they hooked me up to an IV and pumped antibiotics, I was back to my normal, gregarious self in five minutes. Modern medicine at work I marveled.

So when on Thursday, I felt the sides of my neck hurt badly and had a slight fever with difficulty swallowing, I had a bad feeling of deja vu. My regular primary care physician wasn’t available and neither was any doctor at that location. So I picked the next best option and went to a Stanford Express Care that afternoon.

The young doctor who saw me [this post shall contain no names; all the nurses, doctors and clinicians who interacted with me didn’t know they were treating a journalist, and I didn’t know that I would write anything either] did a partial physical exam. He checked my heart and lungs and checked my throat although I could really barely open it, and my gag reflex didn’t allow him the benefit of a tongue depressant.

He said this is most likely a viral infection.

“We could do a strep throat test but these tests aren’t very good,” he declared, noting they can have false positives. “In adults, the antibiotics would only shorten the duration” of the symptoms.

Being aware of accuracy issues of rapid diagnostic tests, I didn’t argue, although I should have remembered to say that while the rapid testing may not give an accurate answer, a bacterial culture would. But he was sure it was viral, and the pain wasn’t that bad, and having grown up in India, you really don’t question doctors, so I left. I picked up some ibuprofen as he advised but didn’t follow his instructions of dosage and frequency. A few hours later that evening things got worse. Now pain in the right ear showed up and I didn’t sleep well.

Next day was Friday, and I powered through. I slept poorly at night. On Saturday morning, I remembered the doc’s advice — if you feel worse and your voice changes, please come back. Both were true, so on Saturday morning I called again even before Express Care opened and spoke with a nurse. He was concerned that the doc had not done a throat swab and advised me to come back in.

So at 10 a.m. I found myself back at Express Care this time not with a doctor, but an older physician assistant. He appeared slightly incredulous that the rapid test hadn’t been done. He did a more thorough physical exam and it hurt bad when he swiped my throat even in that brief instant.

After 10 minutes, the results came back negative. The physician assistant asked me to follow the ibuprofen dosing instructions more closely and recommended a particular brand of throat lozenge.

“You must feel better knowing that it’s not strep,” he said kindly as he guided me out of the room.

I smiled but didn’t say anything. I needed it to be something so I could get the meds. The day continued to be excruciating and Saturday night, I barely got a wink of z’s. On Sunday morning, I was crying (I am a bit of a wus with an embarrassingly low tolerance for pain, the exception being childbirth) the way I did in Belgium nine years ago. My husband advised going to the ER, but after two trips with nada to show for, I didn’t want to go anywhere.

I called the after hours service at Stanford, determined to talk with an on-call doctor. A nurse took all my information and promised that she would get the on-call physician and call back. She was true to her word.

The doctor heard me out patiently when I said that the pain was unbearable and I need something stronger. Given our culture, she assumed I was asking for a narcotic, something she couldn’t do — it was either not possible over the phone on weekends or without seeing me, I don’t recall which. I responded that I was actually looking for antibiotics.

She said this throat condition is viral based on the evidence she saw, when I countered that a bacterial culture will reveal more but I don’t know if Stanford has dumped the sample. The nurse clarified that the bacterial culture was in process, results for which wouldn’t be available until Monday, at which point I grew desperate.

I said that my voice changed and I feel that whatever I have is very close to what I had in Belgium. The doctor responded that my voice didn’t sound “muffled” and it would be strange if I had a bacterial infection. We were at odds over semantics of voice change, and I felt helpless. That was when I threw genuine guilt into the mix.

“I have just started this new job and I need to be able to get through the next few days,” I said just barely able to keep from breaking down.

I think that convinced her. Her kindness won out over her pragmatism and the evidence in front of her. She realized I was “miserable” and decide to go against protocol and prescribe antibiotics and prednizone (a corticosteroid that reduces inflammation) without even seeing me.

Hallelujah.

A slight pharmacy snafu by the same doc created a delay, but by noon Sunday I was armed with drugs, some clam chowder and a Bengali movie on YouTube. I knew it wouldn’t work as fast as the IV antibiotics, but at least could see light at the end of the tunnel.

A few hours later that Sunday I got a call from Stanford Express Care. The strep throat results were in: they were positive for the bacteria that causes it.

Ah the sweet sound of vindication.

They were willing to give me meds, but I was already a step ahead and told them so. After hanging up with Stanford Express Care, I called and left a message for the kind nurse who had helped me and for her to pass the message to the doc, whose conscience I wanted to help clear. End of 72 hours of sheer misery.

On any given day, I am more interested in MedCity’s website pageviews than patient engagement and care delivery. But I believe what I experienced could have been avoided had the throat swab been performed at the first visit on Thursday. So here are my mix of suggestions and lessons for healthcare veterans given with the acknowledgment that, unlike them, I am not medically trained. (Neither am I saddled with the judgments that need to be made daily regarding evidence-based care, cost and quality.)

• There appears to be a general consensus that rapid strep tests have false negatives – some websites note as much as a third of the tests show false-negatives. That combined with the fact that I had no obvious white or yellow spots in my throat made diagnosis difficult. Perhaps we need to develop better rapid diagnostic testing to begin with and providers should push companies for it.
• For a common problem — sore throat — should bacterial cultures be made routine given the unreliability of rapid tests?
• Even with all the advances in technology, medicine remains as much art as science. I am grateful the on-call doctor chose to prescribe me medication. But she was doing it mainly to give me comfort and out of pure kindness, and not because she thought I was right. Doctors need to listen closely to patients who are contradicting what the immediate evidence is. I realize this is a tricky path but until technology is full-proof, a better partnership between patient and doc is needed.

Continuing on that last bullet point, it’s time for a shameless plug. Patient engagement, population health, and advances in technology will all be topics that MedCity’s ENGAGE conference will address on Oct. 18-19 in San Diego. As long as you don’t have strep, we’d love for you to attend.