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Do doctors listen? Do patients know how to tell their story?

These questions have formulated in my mind many times in recent years, after numerous experiences with a variety of doctors and nurses. I’ve encountered all types of practitioners in the last 10 years, some better than the others. But in 2009, it was painfully clear how important those questions are in matters of life and death.

My husband’s appendix ruptured in January 2009. We were on the train from New York City to Poughkeepsie when Jake realized this wasn’t just a stomach bug or food poisoning. Upon arriving at the E.R. in Poughkeepsie, the nurse dismissed the possibility of appendicitis (Jake didn’t have a fever, and pressing the front of his abdomen didn’t send him yowling in pain). Our case was deemed not urgent. We waited almost 2 hours to see a physician, who lazily ran a urinalysis for kidney stones. No blood-work, no scans. With the doctor standing right next to him, Jake says he’s sure his appendix ruptured (as soon as he vomited his guts out, he felt instantly better). The M.D. didn’t see it that way, and confidently gave Jake pain killers and anti-nausea pills with a diagnosis of influenza. Two hours later, we arrived home at 5 AM Friday morning.

To be fair, it seemed like the flu (which was traveling around): fever, body soreness, vomiting, nausea, chills. Returning to a busy Trauma 1 center E.R. in Albany just to receive another flu diagnosis wasn’t on the top of our list that weekend, so we had ignored the E.R. discharge papers that said to return to the E.R. on Sunday if he wasn’t better. We figured instead we’d go to the doctor Monday morning if his “flu” hadn’t broken. Big mistake.

Monday morning, a Physician’s Assistant (P.A.) at Student Health did a basic exam (at this point, Jake’s eyes had turned red with broken blood vessels due to his violent vomiting) while listening carefully to our experiences the last four days. The P.A. had Jake lay on his back and lift his leg to his chest. “Does that hurt?” she asked. “Yes,” Jake grunted. The P.A. explained to us that Jake indeed might have a ruptured appendix or a peritoneal infection. (Pain with that movement and his symptoms is a sign of a peritoneal problem. For the unfamiliar, the peritoneum holds together our abdominal organs, and an infection of it untreated can kill you.) Just to be safe, we went to the E.R.

We arrived there at noon and had our own room and tests being run 5 hours later. By 7:30, the M.D. (remember, this is a different E.R.) returned to us with an unexpected diagnosis: Jake’s appendix had either ruptured or was about to rupture and needed surgery. Depending on the damage, he could have an open wound for months, a drain, or sutures. At 10:30 PM they took him in to surgery, and at 3AM the surgeon came out and described his appendix as “really dead” (she agreed it had likely ruptured in Poughkeepsie Thursday night), and she said his abdomen was “icky icky icky” (no joke – some lingo, huh?). Let me tell you, at this point I had little confidence in doctors. Then of course the nurses who all had different methods of treatment (the rules changed every 8-12 hours), the attempt to feed him 5 hours after surgery when his bowels weren’t moving (he spent the day vomiting), or the lack of care overall, had me losing all hope in expecting good treatment for my husband. After two hospital stays totaling 9 days, failed antibiotics, two abscesses totaling 10cm, and a month with a drain coming out of his belly, Jake was better 45 days after the rupture.

So, why do I tell you this story? Not very “nice” is it? Here’s the thing: we all have a story like this. My sister has a story like this. My mother has a story like this. I bet you know a story like this. Not all of them have happy endings; luckily mine did. But what I learned from it, I feel the need to share here.

I was raised to respect authority, and the expertise of others. So when the first M.D. sent Jake home with the “flu”, I trusted him. When the surgeon dismissed our concerns that the antibiotic pills they prescribed weren’t working, I trusted her. But Jake returned to the hospital 36 hours later with a spiked fever and a second abscess. I was so angry – they didn’t believe us that the oral antibiotics didn’t work. And I was scared: if they sent him home with them again, would his infection get worse? I called my dad, and in his honest approach he said: “Well, you have two options. Either tell those doctors what you want and GET IT, or start digging a 6 feet hole to bury him in.” Just what I needed to hear: the blunt truth. They tested his blood for sepsis, luckily that came out okay. But to the doctors’ surprise, with different IV administered antibiotics both his abscesses disappeared within 2 days. I have a feeling we were right about the prescription they had given us; after repeating “It’s the antibiotics that caused his relapse,” to every one of the 15 doctors, interns and nurses that littered our room for a full day, they prescribed new antibiotics when he was discharged the next morning.

And that’s when I remembered. Doctors are not the experts of our bodies. WE ARE. We know when something isn’t right. We know when it’s not working. Doctors know how to treat illness, but it is our job to be our own advocates. If something doesn’t seem right, we should continue to fight for the tests to be sure nothing is wrong. Sure we might be mistaken or worrying too much, but what if we’re right? Look at my husband. He almost died from peritonitis because we believed a stranger more than our own guts (no pun intended!).

Now, I’m not trying to demean doctors or nurses. They are human, and like all of us they make mistakes. It’s just that their mistakes can be costly.

In January, PBS did an interview with Dr. Siddhartha Mukherjee about his new book “The Emperor of All Maladies,” who they quoted as saying this:

BETTY ANN BOWSER: Do you think writing this book has been the kind of experience that makes you a better doctor?

DR. SIDDHARTHA MUKHERJEE: I think so.

I think — you know, I think — I think one of the most important things that the book — the book made me realize is the narrative aspects of medicine. And that is that medicine is about storytelling. And if you stop hearing a story, the fundamental activity of medicine will change.

I’m told — I had — there’s a wonderful anecdote. It’s a study actually that was performed several years ago in which they asked the question, when a patient begins to tell his or her story, how quickly and on average does a doctor interrupt the patient? And the answer, I — you know, what would you guess?

It’s a surprising number. It’s 18 seconds. So, less than a sentence opens in medicine before the doctor interrupts, and the doctor, he or she, says — you know, starts putting in her own — his or her own story, intervening.

That reminds us that, you know, one of the best things to do about medicine is first listen, shut your mouth, until — until the full story has been told.

And, actually, I’m told that the practice is changing. It is now up to 21 seconds, I’m told.

(You can read the whole story, or watch the interview, here.)

What Dr. Mukherjee said reminded me of a conversation I had with a P.A. from Connecticut last October. After telling him about the P.A. who saved my husband’s life, the man explained that doctors are in such high demand – so pressed for time – that they are not able to listen to the extent that perhaps they should. But P.A.’s have more time, and therefore often listen to their patients more. And that brings forth more effective care.

So what is the point here?

Be your own advocate. Demand to be heard. Ask lots of questions. If the answer is unclear, have them re-explain until it is plain as day. Expect doctors to know all the details. And don’t edit out the details that you think are unimportant. Let them be the judge of what is and isn’t important. Keep timelines – a running log of symptoms, times of day, what you ate, how you felt, what you were doing. Keep notes from your appointments for future reference.

And one last word: Run the tests. I can tell you of at least two women who were diagnosed with IBS by their family physicians without running any tests or dietary adjustments, only to find out that one of them had Crohn’s disease and the other had ovarian cancer. Don’t mess around. This is your health, your body, your life. If you aren’t feeling right, find the answer.