Patience, Patients! Policy
I’ve written before about how I think culture affects patient expectations and medical care, and it’s time to make it a trilogy: I anecdotally put forward the hypothesis that inpatient impatience leads to increased health care payments. (Okay, fine, outpatients and physician impatience too, but I’m in an alliteration mood.)
And the anecdote: Awhile back, I saw a patient get an $80,000 workup for mono. This is that same mono that is viral, that resolves on its own. The teenager had a chain of enlarged lymph nodes in her neck, felt pretty tired, wasn’t eating well. The differential diagnosis? Mono versus lymphoma. A scary differential–viral process where you should avoid contact sports and take it easy… versus cancer. She was under the care of experienced physicians, who have seen both mono and lymphoma many, many times. She got: many, many lab draws (including a botched mono test that should have been repeated earlier in her course), a bone marrow biopsy, a lymph node aspirate, and finally, a lymph node biopsy. These are not totally benign tests; they have significant risks involved, and significant costs as well.
Yes, yes, hindsight is 20/20. But the fact that the patient started to improve clinically within about 4 days of her inpatient hospital course (and with that, essentially showed us that she had mono, not lymphoma) makes me wonder if it was all necessary. A cursory PubMed search didn’t turn up much on, say, delaying a possible cancer workup by a week or 5 days (by which time someone with a non-cancer might expect to start to improve). I can’t say whether the extra week does much for survival or quality of life. If a week really dose make a difference, then maybe the $80,000 is worth it–after all, cancer can be fatal if not caught early.
I also anecdotally recall how many times our team has tried to workup an anemia, or a wacky blood pressure, and we come up with nothing. Or how many times doctors are just stumped for a cause for a disease. Or how many times we do a CT and find something incidentally (often a non-specific, possibly-nothing possibly-something mass known as an “incidentaloma”) and spend thousands of dollars evaluating it, when it turns out to be nothing. With all this increased monitoring and increased lab draws and increased this and that, we’re picking up a ton of human variation that has no correlation with human disease. My friend E told me she went in to donate blood and was told she had a hematocrit of 30, well below the “normal” limit, even for women. Were she to get this result from a doctor, I wouldn’t be all that surprised if he or she wanted to work it up. But she’s walking around just fine with her low blood count, and couldn’t tell the difference either way.
We’re so pressured for now now now, to save time and be efficient, that we’re often wanting an immediate diagnosis when the body won’t give out the answer without the tincture of time. We do a much better job already managing patients as outpatients, which is much less costly than managing them as inpatients–but how much could be avoided if we just learned to wait? Patiently?
How much of all of this is real disease, and how much is just Mother Nature’s wild goose chase as a punishment for trying to peek inside our bodies and understand ourselves? I think the next big thing we need in medicine won’t be a new lab test or a new gene discovery: it’ll be a better way for us to tell who actually is sick, and who just looks like it; which one person out of 100 will require more serious care, when the other 99 do fine with nothing more than reassurance and rehydration.
How much of all of this is real disease, and how much is just Mother Nature’s wild goose chase as a punishment for trying to peek inside our bodies and understand ourselves?
Rhetorical question, right? Please don’t forget the years taken off patients’ lives worrying when there’d be no worry but for our interference.
For every “save” diagnosis there are one hundred peptic ulcers and hypertensives and anxiety attacks and God knows what else.
Flea
From the perspective of this patient:
Almost exactly a year ago, I had a “cancer scare,” and was tested, prodded, drained of most of my blood, ultra-sounded to distraction … you get the picture.
The problem turned out to be far less than what they had anticipated.
Although it was less than pleasant, and I spent (quite) a bit of time worrying, when I look back on it, I do so with gratitude – because if it had been cancer, their thoroughness might have given me a better outlook on recovery.
It’s a catch-22 … if you “ease up” on all of the testing, you’ll save money and time, and have fewer irritated, worried patients, but you’ll also drop some people through the cracks who would otherwise have made out a lot better. Yes, I understand how expensive it is, and I understand that the percent of those who end up with a real problem is very small – but to that tiny percentage, it could well be worth their lives.
However, that said, common sense still needs to be exercised, and the “mono” example seems to be over the top. Were there perhaps parents involved in that mixture?
You know, I think if doctors were allowed to doctor … and lawyers vanished from the face of the earth, a lot our problems with health care today would vanish! :p
As a somewhat cynical non-physician, your $80000 workup aounds to me like a bunch or Drs doing a classic CYA.
See http://econlog.econlib.org/archives/2006/03/health_care_spe_2.html
Wait and see medicine….yes we want answers, and yes we want them now… but the wait and see prescription is well used here….and it works….and removes a lot of grey hairs and worry lines!
You know, I’d agree. Perhaps it’s that I’ve just been through the wringer with a rather large, well known HMO that my husband happens to work for. But you know, after 6 years of crappy medical care, frankly, I don’t really give a damn anymore who or what or why. I’m tired, I hurt, and I’m so sick to death of being at the mercy of this freaking medical turf war between doctors and allied health professionals and insurers and hospitals and lawyers and…. most especially those who have a financial motive rather than a personal (patient) or professional (medical care provider) one.
I do know all too well that there are many forces beyond a doctor’s control limiting their effectiveness. I absolutely believe that in our current healthcare environment every medical dollar must be spent wisely. But in the last 5 years this has been my life
I develop a rash on my chest, 1 large, 3 small. I’m told it’s ring worm, go home and apply ointment. It does nothing, and in a week I look like I have a rash with rabbit genes. I return to the doctor and say the ointment isn’t working, and I have hundreds of these little circles and spots on my chest and especially my back. Without asking me to undress, Dr. Suspicious says “well, there are more, but I don’t see hundreds”. I lift up my shirt, she says “oh”.
A renal cyst nobody bothers to inform me of. The hyperdense one with internal echoes.
The hernia I lived with for nearly 2 years before anyone did anything. You know, the one I developed 2 months after a lap appy. Having just moved my family and cats across the US. You know, lots of lifting when I probably shouldn’t have been. The first doctor I saw told me to my face I was drug seeking, or a hypochondriac. Never even laid a hand or eye on me, but that was his diagnosis. I was in excruciating pain 1-2 times a month for nearly 2 years, went to doctors appointments, hospitals, etc. One time, I also happened to be running a fever, so an ER doc ordered a CT and what do you know…. I finally had the hernia fixed last summer. The 5cm x 7cm one. I’d avoided it for a while, prefering pain to unknown mesh. I love mesh. G-d bless mesh.
How about this one: ASCUS is not the same as AGUS, nor do they indicate the same relative risk of cancer. Either way, nither is a “normal” pap, and yes, the patient should be told. More on that later.
Normal, healthy fetuses do not die at 17 weeks. There is more to an infertility/fetal demise work up than 6 of the most common autoimmune diseases. This is especially so when the patient’s familial health history looks like an autoimmune disease textbook. More so when the patient has allergies and asthma.
Getting your healthcare records transfered ain’t all it cracked up to be, and apparently nobody wants to copy them, but in some states, getting them is nearly impossible.
Denying medical care in absentia of said medical records particularly when patient is reporting things like hyperdense cysts with internal echoes or AGUS is probably not wise. And for everyone who thinks that’s a simple cyst, I have one word for you. Bosniak.
Patients don’t know that benign tumors are benign, and when they have hundreds of them, they are scared. No, your guess during a 5 minute examination is not likely to be reassuring. And yes, there is such a thing as Dercum’s Disease, and yes, lipomas can hurt. Badly. Being in chronic pain does not make one happy. Sorry.
There is such a thing as cough-variant asthma. Unless the NIH blood lung and… whatever organ people are wrong. It happens, I am told.
During 2 pregnancies and an infertility workup, AGUS is still not ASCUS. Should the patient really be responsible for pointing this out, and just how much time and money does a freaking endometrial biopsy really cost?
A person with a 15 year history of asthma who has lived in 3 different states and seen pulmonologists for asthma management in all of them in all likelyhood really does have asthma. Telling her for 2 years that you don’t hear wheezing and she doesn’t have asthma is likely to piss her off (more later).
When a pregnant woman calls multiple times over many weeks for respitory distress, responds to albuterol, but winds up in respiratory distress again, she likely needs something more than albuterol. In other words, treat ‘em and street ‘em is not a cure for asthma exacerbated by pregnancy.
When she is seen at a local ER (outside the HMO) because she is pregnant and has already lost one healthy baby and is scared because she’s blue and can’t breathe, and the local ER tells her she actually has pneumonia and you suddenly claim that no, she has asthma is likely to really piss her off. Especially when you’ve spent 2 years telling her she didn’t, and especially when she’s just been to your HMO 6 times in more than a month in respitory distress. When she’s been this way for weeks and 48 hours after starting Zithromax she begins to improve for the first time in many weeks, telling her that her asthma is self-regulating (or whatever hooey they threw at me) and that she didn’t have pneumonia is likely to make her want to go postal.
14 sticks for ABGs really freaking hurts.
Doing spiometry and the like while you’re lungs are still so red, and inflamed, and in agony from more than a month of having pneumonia misdiagnosed hurts. And yo, I can’t breathe, which would be the whole point. This does not mean the patient was “not compliant”, it means you’re an idiot for trying to get me to do spirometry right now.
AGUS is still not ASCUS.
When parents say an issue has come up with their kid, listen. And when you tell them they’re being overbearing and overprotective and their kid is completely normal and you finally test to appease this monster of a parent and you find a significant learning disability, which explains the issues Mom was reporting something more than a sheepish “well Mom, he does have…” is probably in order. Like say, an apology.
When you refuse for 2 years to give a referral to the autisim evaluation clinic because the kid is “fine!” or “just quirky” or well, any other lame excuse, and then a 9 person multi-disiplinary team consisting of 2 pediatricians and 2 pediatric neurologists and a bevy of therapists UNANIMOUSLY concurs based on weeks of testing and observation that the kid is in fact autistic, not only is Mom going to be pissed, but 2 precious years of treatment have been lost.
Mom should not have to wonder why her kid’s thumbs don’t work and diagnose the problem on her own.
A kid with multiple congenital defects and autism may well have other more serious defects, and it’s probably better to figure that out sooner rather than later. When you find out later, Mom will be even more pissed.
A Mom with 3 out of 4 kids with disabilities of various sorts and fetal demise and a long history of autoimmune diseases probably has this history for a reason, and perhaps it might be wise to make sure the youngest is ok too. Just a basic, cursory check up. Saying she’s just unlucky to explain away statistics probably won’t breed an environment of respect.
One might want to start looking at why so many people with immune issues also have infertility and children with various physical, emotional, educational and psychological issues.
On the subject of ASCUS not being AGUS (or vice versa) young patient who starts complaining of lemon sized clots and who soaks every square inch of her underwear in blood in spite of an industrial sized pad probably needs something more than reassurance.
Said patient is likely not going to be happy when diagnosed with endometrial cancer at the age of 35. And yes, ASCUS is still not AGUS. Even 5 years later, no, it’s still not.
When a patient who’s JP drain has failed asks about an abdominal binder, it’s probably wise to order one rather than saying “they don’t work and they cause infection”. Abdominal binders are much cheaper than a surgeon and an oncologist spending an hour and a half draining a large seroma.
When a woman who has had a TAH/BSO comes in with an abdomen that looks at least 5 months pregnant and says she has significant swelling (pictures available on request. Really. It’s a hoot), it’s probably kinder not to manhandle her abdomen while sleepily telling her “there’s no swelling”. BTW, dear residents, be sure you know who her surgeon and oncologist are. It’s probably not a wise career move to piss of the chief of your service, nor the top gyn-onc in the metropolitan area where you live. And they will be pissed when they spend 1 1/2 hours draining the seroma you claimed did not exist. In fact, the oncologist will be sufficiently pissed that… well, ok, there is one small crumb of justice in this whole mess.
The patient in question will be pissed when she finally escapes your HMO, and sees that you and your nurse determined she was in no pain because she was reading a book (attempting would be a better word).
A person who has a seroma so large that it causes her stomach to hang down an additional 4 inches thus pulling on incisions of varying depths very likely is in pain, whether you want to admit it or not.
Oh, and just for fun…. It’s probably good for someone to be at the nurse’s station on the med/surg floor. Or at least check in periodically. Because when the person who’s drain was not draining springs a leak and they lose 7.35 lbs of fluid (literally) on the bathroom floor as they start to stand up and they are there, half squatting, half standing, and scared to move because they can’t see what’s going on down there other than all this stuff pouring forth from their body, and they pull the bathroom emergency cord and nobody comes, that’s probably bad.
When they yell out the door because the floor is wet and they have a morphine PCA and they are afraid to move lest they fall, and their roommate who has metastatic BRCA and had some kind of cardiac event during her mastectomy is roused by the yelling and starts using HER patient call button, someone probably ought to come see what all the ruckus is about.
If not, then perhaps when the BRCA patient picks up her phone and calls the hospital operator who then pages the nurses station, perhaps you might want to respond to the double time beep beep and loudspeaker page. Promptly would be wise.
After all this, one lone nurse coming in saying “what’s the big emergency” in a harried voice probably isn’t going to endear herself to either of these two worried patients.
5 nurses trying to make nice really doesn’t alleviate the pain of quivering legs spent half squatting for 20 minutes or more, the fear of being left alone at a scary time with no preparation for this kind of event and no clean place to sit and wait with an open and gushing wound.
Wow. This is long, an apparently I’m pretty bitter. I’m working on it.
If anyone has made it this far, please, don’t misunderstand. I do believe that the vast majority of people in the health care field do give a damn. Nobody spends their time and money on an education because they wake up one day thining “wow, I can screw with people’s lives. And get paid!” And again, forces beyond their control are pushing their hand. They’re not to be blamed for that.
And in all reality, we have a dead baby and it needs to get tossed with the bathwater. Let’s focus on bringing forth a healthy baby next time. This model doesn’t work, time to find one that does. For that, we are all responsible. I am sick, literally sick, of doctors telling me how bad this HMO is, why they won’t go there, but they lift not a finger to help the nearly 10 million members of this HMO. If you know it’s bad, speak the hell up already. Loudly. And help the people who go to you for a second opinion do the same.
The actual reason I’m commenting: when I learn that countries using single payer healthcare systems are turning to this HMO for best practices and effective cost containment measures…. I experience a subtle stab of fear. Me, the person who is all for socialized medicine, because I think some jobs you should do because you love, not because it makes you rich. If that principle works for teachers and cops and social workers, it damn well can apply for doctors (eh. Well, personally I think they’ve earned higher incomes, but not as high as some seem to think they’ve earned). It certainly can apply to insurance company executives, lawyers, and most especially, legislators.
I could go into what I think the fundamental flaws are in the system and what I think needs to change (but never will, if I had the workable/doable answer I’d be rich) but this is too long already.
Crystal needs to start her own blog. My eyes blurred over after sentence #4.
Flea
I heartily agree with you Flea. I think the problem arises because many people have no idea how complex the body is, or how many factors are involved in determining a diagnosis. They think the body is like a car, you can just link into the diagnostic computer at the mechanics and it’ll tell you what’s wrong. Not to mention that too many people drive their “car” for too many miles without changing the oil or getting a tune up. Then they spend 50 years or so putting in the wrong fuel, driving too fast. Then, when their “car” finally poops out, they want you to fix it fast, cheap and without any complications.
they want you to fix it fast, cheap and without any complications.
Sounds good to me. I’ve always been very taken with the Star Trek model of medicine. Fiddle with the tricorder, realize without a shadow of a doubt that it’s Brosninski’s Brain Beetles, apply the protoplaser set to 75% tachyons and 25% synthanemine, and you’re good to go. I want that, and I want it now.
More seriously: Crystal: how about telling us which HMO you’re struggling with? Or have they threatened a lawsuit?