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I have a much lesser scare story of my own that taught me this: you just have to be your own [family's] diagnostician.

Fortunately in the age of the Internet and advanced search engines, you actually can be your own diagnostician.

You have to learn to decide when you must have medical attention, and you must not accept dismissiveness from doctors. Yes, you must also not be a hypochondriac -- that will cost you money and crowd out others who need the care. But this is why you must... become good at being your own diagnostician.

This is very much not what doctors want. It's not what the FDA wants. It's not what anyone should want. But the quality of care is so variable, and so dependent on someone noticing in less than the only five minutes they want to spare you, some detail that you have days to notice... that you just have to be your own diagnostician.

Arm yourself with knowledge before you get to the doctor's office or ER.

When I first started my internal medicine rotation at the latter end of med school, I was quietly scandalized by how many diagnoses I caught that other doctors missed. These weren’t clever diagnoses to be proud of - given time and careful thought, the worst med student in the country could have done the same. I caught one diagnosis that had been missed by three other EDs in the past week, and just required asking the patient two questions beyond their chief complaint.

The doctors I was working under weren’t bad. They were, however, forced to run ragged all day without a break for a shit, allowed no more than a few minutes per patient. They didn’t like it any: they’d openly say “don’t emulate this,” while running to the next room.

The funny thing is, surgeries and pharmaceuticals and medical equipment are expensive. A doctor’s time? If he’s not a top renowned specialist, not much. But people have gotten so used to insurers playing the middleman retailer (buying healthcare services cheaply and reselling them to patients at a premium...), they’ve forgotten they can just -pay for the doctors time-.

It doesn’t require playing amateur medical sleuth. It just requires admitting that a highly skilled worker that had to train for a decade to do the job costs more than 20$.

It is basically the same problem business people get when hiring developers.

You just can't know if you are receiving competent service if you have no level of competence on practicing it.

It is very difficult to make such assessments. I don't think it's impossible, though the time to make an accurate assessment may take a while.

Solving a problem may be a useful guide. Find someone who can complete some specific task reasonably well, and even if you don't know how to do that task yourself, you may be able to make an assessment amongst various practitioners. This is easier to accomplish for simple tasks than hard ones (say: running a 100m sprint, or deadlifting 250 kg), but is the principle at the heart of, say, Jakob Nielsen's usability testing.

The problem is that there are domains in which tasks are complex, the time to determine successful conclusion is long, etc., etc. In this case, you may need to farm out the evaluation process, or look to evaluate institutions rather than individuals (say, in education, or medicine -- and there are reasons that the collective evaluation approach has validity for each, though also for adjusting for student population / case mix). The general problem of audits or programme assessment exhibits this.

My point isn't that assessments are easy, simple, straightforward, or not prone to their own issues. Only that there does exist a possibility in many cases for making valid assessments of service competence without specific competence in the service being assessed.

Yes, quite.

Ditto, say, accountancy. You have to have a clue.

I think this problem exists in just about every job. If you aren't cut out to do it, you can't do a good job. No matter if you clean a school or build bridges.

I lost my daughter 6 years ago this month to a very, very similar scenario. Multiple visits to doctor over the week, small improvements, then on Sunday a decline. Went to ER, where she fought the nurse enough such the nurse wasn’t too concerned. She went into shock while getting chest X-rays.

I am so very sorry to hear that. I don't really know what else I can say. We were so lucky in comparison, we have nothing to complain about.

I'm so sorry.

So sorry to hear of this.

Holy fucking shit! I'm so sorry to hear that man :(

My firstborn is 2 months old and I'm always afraid of things like this!

What an incomprehensible nightmare, I can’t imagine what you’ve gone through.

Sorry to hear that.

I'm so sorry

Oh, God. Bless you, :-(

My sincere commiserations.

Very similar experience, and what I was thinking about as I read this article. The signs it says to look out for are essentially standard flu symptoms crossing a poorly-defined subjective line of severity.

We had extreme lethargy and high fever for a couple days, and our threshold was crossed when the vomiting started. The boy walked into the ER with us, collapsed during chest x-rays, and was diagnosed with pneumonia a few minutes later.

Having had the pleasure of dealing with a (different) child experiencing febrile seizures, I'm not sure I'd want to wait for seizing before getting a diagnosis and supportive care. Seizure protocol involved multiple LPs.

I'd love better criteria than "extreme discomfort" and "clammy skin". Persistent high fever is one (but apparently flu can take a turn within 48 hours, so that's out the window). Relapsing fever is a good one. What else are the clear signs?

There’s no good criteria for an unstable child. Nor for adults - that’s the “clinical gestalt” docs spend 80+ hours a week developing in training. That said, a few things to look out for (I steal the below list from Dr Tim Horeczko):

Appearance:

“TICLS” Tone – the newborn should have a normal flexed tone; the 6 month old baby who sits up and controls her head; the toddler cruises around the room.

Interactiveness – Does the 2 month old have a social smile? Is the toddler interested in what is going on in the room?

Consolability – A child who cannot be consoled at some point by his mother is experiencing a medical emergency until proven otherwise.

Look/gaze – Does the child track or fix his gaze on you, or is there the “1000-yard stare”?

Speech/cry – A vigorously crying baby can be a good sign, when consolable – when the cry is high-pitched, blood-curling, or even a soft whimper, something is wrong.

If the child fails any of the TICLS, then his appearance is abnormal.

Work of Breathing: Children are respiratory creatures – they are hypermetabolic – we need to key in on any respiratory embarrassment.

Look for nasal flaring. Uncover the chest and abdomen and look for retractions. Listen – even without a stethoscope – for abnormal airway sounds like grunting or stridor. Grunting is the child’s last-ditch effort to produce auto-PEEP.

Stridor is a sign of critical upper airway narrowing.

Look for abnormal positioning, like tripodding, or head bobbing

Circulation to skin:

Infants and children are vasospastic – they can change their vascular tone quickly, depending on their volume status or environment.

Without even having to touch the child, you can see signs of pallor, cyanosis, or mottling. If any of these is present, this is an abnormal circulation to the skin.

Failing any one of these is worth a serious doc visit. And, I’ll add one of my own: any infant that works so hard at sucking down milk that it makes them sweat gets a free trip to the ER.

There are not any clear signs. Normal flu is the same as deadly flu, until it is not. That is the frightening part. We are helpless against bad luck.

In college, a friend of mine got what appeared to be the flu. None of us (including him) worried about it, figuring he'd be fine in a couple days. He started getting a bit weaker, so one of us decided to drive him to the ER, just in case. He didn't feel bad or anything, just tired.

The ER physician took one look at him and admitted him, shocking us by saying he was within hours of death. He spent a couple days being pumped full of antibiotics, and recovered, but it was a close call. The doctors never did figure out just what it was.

All these years later, and it still distresses me.

you saved his life.

How were you supposed to know a tiered guy was at death’s door?

You got lucky, but in the end you did well.

Almost that same exact thing happened to me when i was 11. The Dr's all said it was the flu, but I couldn't eat and my chest hurt so bad that i could barely breath.

The old Dr's refused to send me anywhere, and immediately got their lawyers when my parents asked questions. The asshats also gave me milk of magnesia at 10pm because "I didn't eat anything for a few days." So that was a great night...

My dad made the call to the other hospital and they arranged an ambulance. I spent a week at the first hospital, and after 3 hours at the new one, I was already under the knife. That was the first time I saw people at a hospital run because of what they were seeing on scans.

The new Dr told my parents (after i was OK) that the only thing he could think about once he initially saw me was that he was "operating on a dead boy."

Scary stuff.

I can't remember exactly what I had, but it was different than what your child had. Very similar experiences though.

Jesus fucking christ at giving an 11yo milk of magnesia.

I have stomach issues and occasionally use that on a day when I know I can spend the entire next day sat near a toilet, that stuff is absurdly effective as a laxative almost dangerously so.

At age three I was diagnosed with the flu in the morning and by dinner time my heart stopped and my dad performed CPR. My heart stopped two other times that day. I had meningitis and my mom keep calling the doctor's office to say I was getting worse. After nine days in coma I actually pulled through. My sister got diagnosed with brain cancer after having a headache that kept getting worse for three days. Our new doctor said he looked at my mom and he knew it was more serious than a headache. He stood by his belief that moms were the best indicator of serious medical problems. I say get a new doctor that can spare the time to listen to a kids lungs and other vital signs.

This also highlights the counter-intuitive fact that being struck by an extremely rare, corner-casey malady isn't necessarily uncommon, simply due to the sheer number of different rare, corner-casey maladies that exist in the long tail of possible things that can happen.

The lesson is that doctors need to be thorough regardless of how many cases they see. Telling someone they’re not sick or making it up should be grounds to lose their credentials.

Yeah my doctor didn't notice the last time I got pneumonia. A lot of doctors will just do a quick listen to the chest for the rattling but you don't get that in some cases. Luckily the Urgent Care I went to when my fever spiked later did a chest X-Ray. Kept me out of the hospital thankfully.

Kinda makes me want to get back into optics. Imaging like that should be as routine as taking a temperature. Be nice to see stuff like diffuse light and ultrasound get super cheap so it's used routinely.

Will an ultrasound show it, perhaps one could book in for a "baby-scan", cheapest scan in UK is about £40. Is ultrasound not supercheap already?

They sent my son for an ultrasound to work out where exactly the fluid was laying on his chest, so yes, they do get some useful info from it.

I've no idea how disruptive technology like cheap ultrasound compares with "traditional" medical equipment. It may be possible to do it cheaply now, but I'd assume the big equipment manufacturers will try to justify their six or seven figure prices for as long as they can, and those in charge of the hospital budgets will probably not be totally unbiased when it comes to making purchasing decisions. It may take some time to filter down into hospitals (like the internet).

It's not even that it's that hospitals use xrays, ultrasounds, and MRI's as cash cows.

Consider a $40k higher end ultrasound machine. Now consider the capital cost of the machine over 10 years. $4000/yr or $10 a day. Yeah the bill you get for an ultrasound is all pork.

No, the bill you get for an ultrasound is a tech or a PA to run it and a doc to properly interpret it.

It’s funny how popular the Wizard of Schenectady story is on HN when it’s about engineers, but somehow fails to be applied to non-engineers.

I'm sure lots of people have had the experience of paying a bill for the expensive test and also a bill for the doctor to interpret it.

Kind of focuses one's attention on the expensive test.

I guess if utilization is low the technicians can end up costing a lot. But say they cost $200,000 a year and do one scan each working day. That's something like $1000 of labor, but it also assumes that they only manage to do 1 thing each day they work.

> No

It was my point was that the 'expensive' isn't due to the capital or maintenance cost of an ultra sound machine.

Although portable units do have the advantage that in a lot of cases the attending physician can bypass the cash cow radiology department completely.

As for the rude tone of your comment, I have a tens of thousands worth of test equipment on my bench and I'd never dream of billing a client an 'oscilloscope fee', a 'logic analyzer fee' or a 'spectrum analyzer fee'. And every other industry works like that, except medicine.

Good point. Not to mention a radiologist bills separately from the procedure. I have a $1M antenna near field scanner at work. It looks just like a CT scanner, but I don’t bill $6k per use, then another $1k on top to process the measurements. It’s capital equipment, and I bought it since it saves measurement time, which allows me to take in more work. What a load.

When we had our first kid, my wife had a “fun scan” done. A fancy 3D color ultrasound. It was $120 for a 1/2 hour session. Same diagnostic ultrasound cost $1000 on a much older machine, same person running it.

There was an article on here a couple of years ago about cheap, hand held ultrasound. I was downvoted for saying youl’ll never see it in use.

> I have a $1M antenna near field scanner at work.

tingle

Just add if one thinks a bit one can find a lot of industries that depend on renting out expensive capital equipment. Consider a taxi. A taxi might cost $25,000. Smog machines that auto shops have are not cheap. An Boeing 787 costs around $600,000 a seat. Rent a hotel room lately?

I'm unsure about ultrasound machines utility for diagnosing fluid in the lungs but despite what medical professionals claim ultrasound machines are cheap. Some portable models are under $5k. Low end Chinese made units are sub $1000.

You're always the one in charge of your own medical outcome, because as you've seen, your doctor can always leave you holding the bag -- and is lawsuit your recourse?

Agreed. Hard to sue from the grave. Keep asking for second opinion. By the time most people go to the doctor it is getting serious.

The right answer for your son would have been for them to jump right into surgery (or whatever you Brits call it, seeing as you apparently call a doctor's office a "surgery"... the act of cutting into skin for medicinal purposes) for something which looked like a flu complicated by an ear infection. Reaching that diagnosis would likely have involved magic on the part of the MD (or whatever you call a physician) and MDs don't get their licenses from Hogwarts, not even in the UK.

Yeah, we call the doctor's examination room a "surgery", and the place you get the actual surgery done is an "operating theatre". Divided by a common language and all that... but obviously it comes from a time when your local doctor would have performed surgery (presumably with leeches) in his front room.

But he ended up in surgery pretty quickly after we arrived at the hospital. It took them a day to analyse his X-rays and realise he was not responding to regular antibiotics, and the decision was made to transfer him to the larger hospital for the operation. As for the misdiagnosis made by our family doctor (G.P. or General Practitioner, we call them), I'm not qualified to comment on whether it was a reasonable error or not.

> our family doctor (G.P. or General Practitioner, we call them)

We have the same term and abbreviation in the US for the same people, but I never know how many people who didn't grow up around medical people know it.

> As for the misdiagnosis made by our family doctor (G.P. or General Practitioner, we call them), I'm not qualified to comment on whether it was a reasonable error or not.

Sometimes it is, and it still goes to court. I'm biased towards the US in my knowledge, but a doctor or nurse can be legitimately afraid of, essentially, the precise kind of case your son was the victim of: The extremely rare serious problem masquerading as a very common and not-very-serious problem. That road goes directly into malpractice lawsuit territory, and when you're on that road everyone goes a bit insane.

Everyone in the medical field carries malpractice insurance because, as I've implied, some malpractice lawsuits are inevitable, due to a confluence of reasonable judgement and an unreasonably uncommon malady. Does this mean malpractice law needs to be reformed (read: done away with)? No, because some people out there practicing medicine are really incompetent, or lazy, or just go a bit weird and start cutting their initials onto livers like some deranged Zorro. We need some way to get those people out of the profession.

I guess I'm not really leading anywhere with this. The fact innocent people will have to go to court over reasonable judgment which leads to a bad outcome because of blind chance is just magnifying the unfairness of the whole event, increasing it and spreading it around. Will it make the MD more likely to correctly diagnose next time? It might make them more likely to order a test that's probably not warranted statistically. That's not the same thing. Everyone's human, and humans are sometimes incompetent and malicious, so we need malpractice law, but humans sometimes make honest mistakes and always use limited evidence to reach conclusions which are sometimes wrong, so malpractice suits catch innocents and send them through a wringer.

Why should litigation be the first option for relief? This would have a chilling effect on practitioners coming forward. Taking from devops, having a blameless review would be in order to see what kind of assumptions/biases caused the poor decision and improve going forward not sue them out of practice. Sidney Dekker speaks about in the context of the aviation industry and how humane practices leads to safer flights for everyone.

It would be very psychologically difficult for someone whose relative just died to accept a "blameless review", and if that review lead to a decision that a lawsuit was unwarranted, well, that might make the relative angry enough to do something regrettable.

I agree that it's the right answer in a cold-blooded "improving the practice of medicine" sense, but laws have to take human behavior into account.

> It would be very psychologically difficult for someone whose relative just died to accept a "blameless review",

Yet that's precisely what the aeronautic industry does.

I agree with you. This is the main reason we did not go down the malpractice route. It is far less common here in the UK than it seems to be in the US, but still fairly common. But as you said, everyone goes a bit insane. As it turned out, our doctor probably dodged a bullet because of the sheer chance that I got a second opinion and the fact that the hospital system worked flawlessly thereafter.

If, god forbid, our son had not recovered, it would have been a different story, there would have been anger to vent and likely a court case.

The difference between the UK and the US is that UK healthcare professionals have a legal duty ("Duty of Candour") to tell you when they've made a mistake; what they're going to do to fix the mistake; and what they're going to do to prevent the mistake from happening again.

This is enforced by all of the HCP registration bodies (GMC for doctors; NMC for registered nurses and midwives; HCPC for allied health professionals). It's also supported by the NHS Litigation authority (the body who'll pay out for negligence claims, or defend those in court), and various medical protection organisations (the legal organisations that represent HCPs in court cases). The MPTS (the tribunal service that holds hearings in fit-to-practice cases) also strongly recommends that HCPs apologise in full.

In England and Wales we have a bit of law ("The Compensation Act") which means an apology outside a court for something that went wrong isn't an admission of liability, which makes it a bit easier for HCPs and their employers to apologise.

I've collected a bit of information here: https://medium.com/@dan.bealecocks/advice-to-doctors-about-s...

all doctors should be able to hear large amounts of fluid in the lungs and, furthermore, should be on the lookout for pneumonia when someone had flu and then got worse. Your doctors, in this case, performed terribly.

Seconded. This is an insane story. You don't need a second opinion, you need a better doctor.

I suspect you are correct. The fact that the second doctor I saw immediately sent him to hospital makes me think the first doctor was not doing her job properly. I guess that's why they say you should always get a second opinion.

The second doctor shouldn't make you second guess your first doctor. The second doctor had the advantage of time. Pneumonia generally doesn't manifest in the span of hours.

It's not like a liter of fluid is just dumped into the lungs immediately... couple that with Rhonchi or Rales due to (what I presume) bronchitis that WAS diagnosed. You can't treat everyone that is Flu-like symptoms as if they are going to die of pneumonia. Doesn't make sense.

but people with neck pain + fever + general sickness after a flu? that could also have been meningitis!

'Surgery' isn't really used - we'd normally say 'operation', as in 'grandma needs a hip operation'

Yeah, operation would normally be the noun. Surgery would still be the verb.