The problem with doctors

So last week, Annie’s post on Ten Ironies and Truisms of the ER got picked up by Digg.com, a site where users nominate articles they find on the web and the most popular ones get exposure on the front page of the site (or something like that — I don’t use Digg, so I have a pretty superficial understanding of how it works). When Annie’s post hit the Digg front page, our site got 27,000 visits in the space of about three hours, temporarily overwhelming our software. (We’re prepared for another onslaught if it ever happens again, now that I’ve installed a fancy caching plugin.)

One thing about our sudden popularity was a flood of new commenters, as you noticed. Annie’s post got 50 comments on our site and more than 150 on Digg, and you of course noticed that most of them were a bit, er, different from the usual comments on our site. In contrast to Annie’s original piece, which was thoughtful, well-observed, and graceful, a number of the comments were resentful, angry, or peevish. Doctors and (especially) nurses sounding annoyed with patients and bitter about overwork. Patients or family members of patients who have had experiences ranging from bad to horrific. Comments like:

11. Most doctors would prefer that the patient dies rather than admit they didn’t know what the problem is, or that they make mistakes.

and:

95% of the time, it goes like this:
Respond with lights and sirens to a call for chest pain
Get there- find out that the patient has had diarrhea for 3 days, and went to the ER yesterday for the same thing
Realize that the patient’s vital signs are well within normal limits, and he/she is walking around gathering up his/her belongings.
Listen while the patient announces that he/she has Medi-Cal (California’s public insurance)
Listen while the family members tell you why they can’t take the patient to the clinic
Listen to the family tell the patient that he/she will get seen quicker if he/she goes by ambulance, and that it’s free (because the taxpayer pays the $1000 bill)
Drive the person with the sore tummy to the ER, where he/she will be sent right to the waiting room, where he/she will either wait for 8 hours, or just go home and call 911 a few hours later (yes, this happens all the freakin’ time).

and, heartbreakingly:

Dad complained in the morning 2 days after surgery that his stomach hurt like hell. Nurses said a doc would be by to look at him. He told a different nurse later that evening that it hurt real bad. She gave him pain meds and said she didn’t see it on his chart that he was complaining of pain. I complained to the head nurse. Supposedly she called the doc. He was rushed to CCU in the middle of the night. After tests from the house doc (his doc didn’t show) it was determined he had peritonitis. He died later that evening after an agonizing pain filled day in November 2006.

Point is, he and I complained and people still didn’t listen. Fuck doctors, hospitals, and RN’s. Call me bitter, but I don’t believe they give a shit. And if they do, they are so overworked and stretched thin that they can’t care in the way they’d like.

I have several good friends (and co-bloggers!) who are doctors. Even if I didn’t, I don’t think these comments are accurate at face value. But they carry some truth. Anyone who’s had much involvement at all with health care in America knows it has all kinds of problems, some minor and some major.

My most in-depth involvement with the U.S. medical system started my first year of grad school when I had a seizure while watching the Oscars at a friend’s house. I experienced it as a total blackout; I came to while strapped to a gurney and being loaded into an ambulance, confused and then quietly terrified as people explained what had happened. My heart was racing and I’m sure my blood pressure was ridiculously high — the EMTs kept telling me to relax and stay calm, but I was strapped to a board with an IV in my arm and the ambulance had its sirens going and was speeding through suburban Maryland like it was some kind of emergency for fuck’s sake and there was nothing at all about the situation that indicated calm to me.

The ER seemed fairly quiet that night, and I was seen relatively quickly by a youngish, Asian-American doctor. I got the impression that he was knowledgeable and competent. But his bedside manner did nothing to help my immediate problem, which was that I was terrified of this bizarre thing that had just happened to me. “A seizure is just as serious as a heart attack,” he told me, I guess to impress that I needed to see another doctor soon. He also started me on an anti-seizure drug, something my neurologist later told me isn’t usually done after a single seizure. That prescription fit a pattern that has been near-universal in my experience with doctors: They often don’t explain why they’re prescribing the drug beyond “it’ll treat your symptoms,” and they almost never explain side effects or other downsides. (All anti-seizure drugs have serious potential side effects; it’s hard to stop taking them once you’ve started without risking withdrawal seizures; and they’re expensive.)

Luckily, I was insured when all this happened — if it had been a year earlier, I’d have been one of the more than 10 million Americans between the ages of 19 and 29 without health insurance that year, and I have no idea how I would have dealt with the situation. As it was, my HMO was painfully slow about allowing me the appointments I needed: first a primary-care doctor who did nothing but sign a paper that let me see a specialist, then weeks later a neurologist who referred me for a number of tests, each with their own scheduling problems and no particular hurry to work me into the lineup.

About three months into this process, after getting a second MRI because the first MRI had been done at a place that didn’t do a variant of the test that was apparently necessary, I got a call from my neurologist. (I had found her reassuringly knowledgeable and willing to explain things; just taking a couple of minutes at the end of the appointment to answer my questions made her my favorite doctor ever.)

“The first thing I need to say is that it isn’t a tumor.”

Um? I guess I should be not as scared, then? Although I’m suddenly terrified of this thing that’s at least not quite as bad as a tumor.

She said the second MRI had picked up a thing called an arterio-venous malformation or AVM, an abnormal direct confluence of an artery and a vein in my brain. If it were to really bleed, she said, I’d have a massive stroke and possibly die. The statistic she gave was a one-percent chance chance of death per year. (Six Feet Under fans will recognize this as the condition Nate had and eventually died of.) The neurologist sounded calm but had already scheduled an appointment for me the very next day with a neurosurgeon at Georgetown.

So, mildly freaked out, I trekked out to Georgetown by subway and bus, trying to prepare myself to be told I’d have to have my brain cut open. The neurosurgeon swept into the examining room, a caricature of the arrogant surgeon. He did a brief neurological exam and looked at my MRI films. “That’s not an AVM,” he said. “That’s a cavernous angioma.” He explained that this was a different kind of tangle of blood vessels and that it was much less dangerous.

He said he was sure that’s what it was, but if I really wanted to rule out an AVM I’d have to have a cerebral angiogram, an invasive test in which a thin tube is snaked up inside your blood vessels from crotch to neck to release dyes that illuminate parts of the brain’s circulatory system on x-rays. I definitely would like to be sure that I wouldn’t have to live with a one-percent-per-year chance of having my head explode, but the angiogram itself carried a small risk of causing problems, including stroke.

I hesitated. The surgeon quickly said, “Well, come back in a couple weeks and make up your mind,” then swept out of the room before I had time to say “Wait.” If I’d had another 30 seconds, I could have made up my mind. As it was, I had to trek back out to Georgetown two weeks later to explain again to the surgeon what was going on (he was paying less attention this time — because he wouldn’t get to cut open my brain?) and get a referral for the angiogram. (The test went spectacularly, by the way, and ruled out an AVM.)

The last bit of this medical saga that I’d like to share happened several years later. I was (and am) still on anti-seizure medication, and I had switched insurance companies and had to get a new neurologist to write the prescriptions. At the appointment, I told the doctor about some new, fairly minor neurological symptoms I’d been having. He wasn’t sure what they meant, and since it had been several years and I was a new patient he had me get another MRI and EEG. These didn’t show anything he could use to make sense of the symptoms, so he basically shrugged, wrote me a scrip for my refills, and told me to come back if anything got worse. Which it hasn’t. I had the feeling that I could have pressed the issue, but I wasn’t sure myself whether the symptoms were anything more than just annoying.

The point of boring you all with a slice of my neurological history is to say that I sympathize with the commenters who were bitter about their experiences with doctors. The ER doctor I saw was about a 5 on a scale of 1 to 10: He took time to examine and talk to me, since the ER was luckily not very busy, but he did nothing to reassure me as I faced the first serious medical issue of my life and started me on medication that, according to two neurologists, probably should have been held back pending a diagnosis. The specialists I saw were a mixed bag. For the most part they were very competent, although their levels of expertise varied greatly. (The most expert from what I could tell was the interventional neuroradiologist who did the angiogram; he seriously impressed even the technician who was helping with the procedure.) But they also tended to see me as a problem to be solved and were oblivious to larger issues of how my diagnosis and treatment would affect my life. (Ever since I left home and had to quit seeing my old pediatrician, I’ve also found general practitioners to be rushed, uncaring, and incurious about my overall well-being. I know there are plenty of exceptions, and if anyone knows one in New York who’s accepting new patients, let me know.) And I suspect I had a better experience of the whole process than someone from a lower class and educational background would have; I was also able to draw on friends for support and advice, and some of these friends were even doctors themselves.

What I wish some of these commenters — and some other people I’ve talked with who have criticisms of the medical profession — could do is to think about the problems in terms of the systems that create them. A doctor friend tells me insurance rules give GPs about five minutes per patient, including paperwork time. [UPDATE: 15 minutes per patient; five minutes of face time; see comment 9 below.] No wonder most people feel their doctors don’t care about them and don’t really listen to their complaints; no wonder doctors leap to the most likely diagnosis, especially in less serious-looking cases, and don’t pursue odd complaints that don’t fit standard classifications. With insurance companies pushing to cut costs by limiting doctors’ face time with each patient, no wonder medical schools emphasize the technological rather than the human.

Our screwy system for paying for health care causes its own problems. It’s a patchwork of private and public systems that leaves plenty of people with every incentive to wait for problems to become acute so they can get emergency care rather than relatively cheap preventive care. It had me waiting three months for an MRI because I could only go to a facility owned by my HMO, which had obviously decided it would be too expensive to open enough MRI facilities to reduce the wait time. This is to say nothing of the people who end up dying or suffering for life because our country has chosen not to do what every other industrialized country has done and provide basic health care to all citizens.

My point, though, is that doctors aren’t the monsters depicted in some of the comments. They’re creatures of systems — economic systems, education systems, systems of professional prestige. It’s far more productive to discuss the systems that create our current state of health care than to write off doctors as incompetent or greedy or arrogant. And some of them are all of these things. A particular problem with our perception of doctors, I think, is the lingering sense of them as a high priesthood, which some doctors themselves encourage. On discovering that doctors are fallible like the rest of us, some people fall prey to the bitterness of disillusionment. But the bitterness is misplaced: It turns out that doctors are just like the rest of us — fallible, but mostly decent. It is the context they work in that we should be trying to change.

10 responses to “The problem with doctors”

  1. lisa t. says:

    no comments yet? well. maybe that’s because all of your readers, like me, totally agree with you (can you imagine?!). it’s a more-than-complicated issue, but it’s the system that is (purposefully?) complicated– and not necessarily the people who must work within the system.

    as a 10 year educator in california public schools, i can attest that there are similar (purposeful?) complications in that system too.

  2. Stephanie Wells says:

    I think this is an incredibly humane response to a situation that could easily have warranted you feeling as much resentment towards doctors as many of the anti-med. commenters in AW’s post. Your ability to see the larger problem here as a systemic one, not as vocational egotism or indifference, should count in your favor the next time you see the doc, get your visit up to six or seven minutes perhaps–maybe you should have this post included in your chart!

  3. Dave says:

    Lisa — I definitely agree with you about the school system creating similar problems. It can make you furious sometimes (well, not me very often since I don’t have much contact with educational bureaucracies these days — but I used to), but the key is to direct the fury in the right ways. (Still, I just finished reading the fifth Harry Potter book, the one where that awful bureaucrat Dolores Umbridge takes control of Hogwarts, and it was delicious to hate her and see her get her comeuppance. )

    Stephanie — I don’t feel like I have had it so bad in my dealings with doctors and the health-care system. There have been problems, but I’ve largely dealt with them. But then you think about unluckier people, and especially about people who don’t have the resources to work the system, seek out the best specialists when needed, get second opinions, etc. And it’s clear some things need to change.

    Also, I already got an email from a friend who read this post and recommended a new GP to me, so yay!

  4. brooke says:

    Dave, great perspective on the response to Annie’s post and on the health care eco-system as well. I often think of the particular problem of providing good health care as a challenge of improving information quality. Odd, perhaps, but here’s what I mean:

    It’s all too easy to fall into the mindset that doctors are part of an infallible “high priesthood,” and that they possess all of the information to make all of your ailments (real and perceived) evaporate if *only* they would listen more carefully.

    The reality is that doctors (and all health care workers) are in a profession where information is always incomplete and imperfect. To be sure, the value of having the best information available regarding symptoms (by asking the ‘right’ questions, listening carefully, and ordering the right tests) is critical, but even then medicine is a highly imperfect science. I think more times than we like to think, doctors have about as good an idea of what’s wrong with a patient as she does.

    Compounding the problem of information quality, discovery and transmission are the statistical challenges inherent in health care – the number of ailments, the number of patients, the economics of diagnosing one and treating the other. I think this is where most people’s frustration comes from. They are frustrated by the lack of personalized attention. If only doctors and nurses paid more attention to me! But the reality is that were the health care system designed to chase down every potential cause of every symptom, it would grind to a halt and overall mortality and morbidity rates would increase.

    The sheer volume of patients and potential ailments require doctors to play the odds a little bit. My experience is that many doctors adhere to Occam’s razor when making their diagnosis, which can feel a bit like being dismissed or ignored.

    It’s never fun to encounter a disrespectful or condescending person, regardless of the context. When that context is potentially a matter of life and death, it’s understandable that some people would get their panties in a bunch. Understandable, but perhaps not that logical. A broader analysis suggests that there are a lot of moving parts in the health care system, so a blanket statement about how much doctors, hospitals and nurses suck is pretty useless. I’m not surprised by the big (and critical) response on Digg. The blogosphere is not unlike the ER in that those inclined to speak loudest probably have the least to say. But on the Internet, attention is the medicine, so the squeak and the grease are often the same…

    Ultimately, everyone, including patients and the people who treat them, deserve a better health care system, but whatever system we have won’t be perfect.

  5. brooke says:

    Incidentally, after finishing my comment I read the Wikipedia entry on Occam’s razor, which has a couple of paragraphs on its use in medical diagnoses — called Diagnostic parsimony. I was actually mis-using the principle in this context. What I meant was that doctors are typically looking for the simplest explanation of a patients symptoms – not the “explanation with the least causes that would account for all of the symptoms” which could actually be the most complicated and rarest of conditions.

    Anyway, fun read if you’re a geek with too much time on your hands and it’s 3:15 and you don’t want to actually do any work until you leave in 15 minutes to go to yoga. Or something.

  6. Dave says:

    Jeez, brooke, don’t you watch House?

  7. brooke says:

    Not if I can help it.

  8. Kirk says:

    First, you have to understand that ER doctors do exactly what they are supposed to do: treat emergencies. While he probably shouldn’t have given you anti-epileptics, he did tell you to see a neuorologist.

    As for others, bedside manner is very relative. In my experience (also having a cavernous angioma), you need to learn as much as you can so the doctor doesn’t treat you like a child. When I started learning about my condition (which I did pretty quickly) and was able to use some of the same words the doctors did, then they started talking to me very differently. I have been very fortunate to have good doctors who understand my problem and who are frank and open about what they know and don’t know.

    Which brings me to an important point: doctors don’t know everything. CAs are very poorly understood, so you find very different opinions. Go to the Angioma Alliance website (www.angiomaalliance.org) to find out more about CAs so you can know as much as – and in some cases even more than – your doctors.

  9. Dave says:

    Thanks, Kirk. Good points.

    I should correct something in the post, based on correspondence with an actual doctor. Primary care doctors get about 15 minutes per patient, based on seeing enough patients to bill enough to make a decent living. In that 15 minutes, my correspondent writes, a doctor has to:

    hear all the patient’s issues, examine the patient, make a diagnosis, make a plan, educate the patient, answer all questions,
    make a full note in the chart documenting everything done and discussed in the visit,
    write referrals and prescriptions,
    fill out any of the patient’s forms,
    call any specialists to coordinate care,
    order labs,
    review the labs,
    call the patient back/write letter with results or labs and other radiology testing,
    possibly take any further calls from that patient respecting that visit.

    Which means 5 minutes is about as much time as the typical patient will get with the doctor.

  10. AW says:

    Thanks for this thoughtful post, Dave. It’s taken me a couple of days to have time to make an adequate response. What follows is a list of connected but not very organized thoughts:

    –There is no doubt that medicine, as an institution, is sick. The fact that you were able to negotiate the system so successfully is a testament to your tenacity, intellect and self-confidence. You are absolutely right that the system frequently fails people who don’t have the education, interpersonal skills or financial means to make it work for them. What’s worse, is that it does this when people are already feeling fragile or scared from being ill.

    –I think much of the system’s sickness is built into the way medicine is taught. Some of the most malignant people I have ever met are physicians. Ironically, they mistreat patients and med students in the name of teaching medicine. I had an attending physician in my third year of med school who considered that his day had not even started until he had taken my head off in front of a team of about 20 people who gathered every day for rounds. He called me names and repeatedly told me I was stupid–and I would have felt sorry for myself except for that he treated his patients the same way. He kept his job because he was a top-notch researcher and brought my med school lots of money.

    What’s sad, is that this kind of treatment is not just accepted, but common in terms of the way MDs are trained. I have often reflected that it is no wonder many physicians are assholes: med school and residency teach us that to be “a physician” is to behave this way. In a weird take on Stockholm syndrome, students model attending physicians’ behavior in order to survive medical training and then end up becoming oppressors, themselves.

    –I also think the system is financially sick. My personal belief is that basic health care is a right that everyone ought to receive and that our country could learn a lot from other countries that provide basic health care. I hope that I see these changes made in the course of the time I practice.

    –I love my job. I am blessed with both being able to do work I love and to be well-paid enough to make a living–and to pay off the sizable student loan debt that becoming a doctor required. I realize that having these like-my-job/make-enough-money criteria fulfilled at the same time puts me in a minority of working people, and I try to remember this every time I go to work.

    –That being said, there are still times when my job is hard. Particularly in Emergency Medicine, where triage is too often the name of the game. On too many occasions to count, I have had patients and family members yell at me for neglecting their pain or for making them wait, not knowing that the reason I was not attending to them was because I had spent the last hour trying to resuscitate a patient down the hall who died and the thirty minutes that followed it trying to comfort that patient’s grief-stricken family. Privacy and ethics prohibit me from telling the yelling patient the details of why they have had to wait, and so I can only apologize and try to reassure them that their problems are still important, even though I could not attend to them in the way they wished. Sometimes this apology works. Other times people have threatened to sue, and I have even had patients threaten to kill me–one of whom then (because there were no psychiatric hospital beds available) spend four days in the ER for homicidal ideation directed at me. (This was all because I had refused to refill a pain med prescription that records indicated he was also getting filled from multiple other providers).

    –Even with these challenges, I still love my job, but I don’t always do it perfectly. The ED practitioners I admire most work with their heads and hearts going full-steam-ahead on behalf of their patients from the time they start their shift until it is time to go home–and they ignore the complaining colleagues around them. They are leaders not because they are perfect, but because in their imperfection they are willing to work on behalf of other human beings in a system that is very much broken. I will spend a career aspiring to this kind of work and may never catch up. These kinds of MDs do exist, however, and I’m always grateful when I encounter one.

    Enough. Thanks, again, for your post, and for TGW dialogue.