NPR and ProPublica yesterday ran a fine story on why we need autopsies – but, alas, do them only rarely. Half a century ago, roughly half of all hospital deaths in the United States got autopsies. These post-mortems corrected tens of thousands of wrong or partial diagnoses, taught doctors and hospitals invaluable lessons (humility among them), and helped revealed both trends in misdiagnosis and new diseases ranging from Legionnaires disease to West Nile virus. The autopsy, as the NPR/Propublica report story put it, is the ultimate medical audit. It is a foundation of modern medicine, and its two greatest values are to show doctors where they tend to go wrong, both on the individual level and through all of medicine, and providing crucial medical information to the families of the dead. It ensures that instead of burying their mistakes, doctors learn from them.
In the NPR/ProPublica story, for instance, an autopsy revealed that an otherwise mysterious death was due to a pulmonary embolism — and that the embolism was in turn caused by widespread cancer in a woman who was thought healthy. This history of cancer will be of vital importance to her children and other relatives. It will also teach the doctors who cared for her some valuable lessons in diagnosis and treatment.
Unfortunately, the autopsy’s decline over the last half-century is not a brand-new story. Medical watchdogs have been howling about it for a couple decades. And seven years ago, I wrote “Buried Answers,” a New York Times Magazine feature, that explored at greater length much of the same information that is in the excellent NPR/Propublica story.
Yet I’m glad to see the NPR/ProPublica story; this is a tale that cannot be told too many times. To reinforce the NPR/ProPublica story, I thought it might be useful to run here the last section of my story. It describes a particular autopsy that I attended, its unexpected findings, and their implications, both for the particular patient — who left the room looking every bit as good as he did when he entered — and for those close to him both in his life and in his treatment.
From “Buried Answers,” New York Times Magazine, 24 April 2005:
Recently I stood in the autopsy room of a large teaching hospital waiting for a body to be brought up from the morgue. The young pathologist who would be overseeing the autopsy told me what little he knew of the morning’s patient. The middle-aged man had come to an emergency room suffering seizures. A CAT scan of his head showed a lesion, possibly a tumor, in his left frontal lobe. He initially refused a biopsy, saying that he might seek a second opinion. The emergency-room doctor, worried about pressure in the patient’s skull if the mass expanded, put him on anti-inflammatory steroids and sent him home. Sometime later the man came in again with stronger and more persistent seizures. Despite efforts to ease pressure in his skull, he progressed from seizures to a coma and died. Midmorning the day after that he was on a gurney on his way to the autopsy room. The man was not overweight and had no known history of serious illness. His main compromising factors were that he was an ex-drug user and a smoker. “The drug use would suggest infection,” the pathologist said. “The smoking, obviously, cancer.”
So what killed him?
“Most likely he herniated,” the pathologist said. “Things got too tight in his skull from whatever this growth was, and the pressure builds and finally it pushes the base of the brain down through the opening where the spinal cord enters the skull. That fits with the way he died. But even if that’s right, we still don’t know what the lesion is.” At this point we heard the rumbling of wheels, and the autopsy assistant pushed a gurney covered with a canvas tent into the room. “We’ll know more soon,” the pathologist said.
He stepped out to get gowned up, and I went in to watch the assistant prepare things. By then the canvas tent was removed to reveal a body wrapped in sheets. The assistant worked efficiently but with a calm, understated respect. With no more force than necessary, he pulled the body from the gurney onto the autopsy table and unwrapped it. The patient appeared to be thinking: his eyes, slightly open, stared dreamily at the ceiling.
In addition to the pathologist, the assistant and a pathology resident, who would do the actual knife work, eight others attended, including a fourth-year medical student, two residents, three neuropathologists and a cardiac pathologist who had just dissected another patient’s heart and lingered to see how the brain case played out. As people milled and talked, the assistant sank a scalpel into the flesh behind the man’s ear and began cutting a high arc behind the rear crown of the skull. When he reached the other ear, he pulled the scalp’s flesh away from the skull a bit, crimped a towel over the front edge of the opening he had made and, using it for grip, pulled the scalp forward over the man’s head. When he was done, the man’s skull lay completely exposed and his inside-out scalp covered his face down to his mouth. Now a neuropathologist, wielding the skull saw (like a cordless kitchen mixer with a rotary blade), carefully cut a big oval in the rear and top of the man’s skull. He then used a hammer and chisel to tap around the seam. Finally he tapped the chisel in at the top of the cut and pried. With a sucking sound the skullcap pulled away.
The brain looked unexpectedly smooth. “That’s the swelling,” the neuropathologist said. “The convolutions usually show much more plainly.” He gently pulled back the frontal lobe and slipped scissors behind the eyes to snip the optical nerves, then the carotid arteries and finally the spinal cord itself. Then he gently removed the brain and set it upside down on a table.
Even my untrained eyes could tell things weren’t quite right: the left hemisphere was swollen. The growth in the left frontal lobe, less a lump than a slightly raised oval area about an inch long, was paler, yellower, firmer and more granular than the pinkish-tan tissue surrounding it. “Could be a tumor,” the neuropathologist said. “Could be an infection. We’ll know more in a few days.” Similar lesions were eventually identified on both sides of the brain.
With a pair of scissors, he pointed at a bulbous area around the brain stem. “Here’s the herniation. See how it protrudes? That’s where it got pushed down through the opening where the spinal cord comes through. That’s the medulla that pushed through, which, among other things, controls the heart and breathing. That’s just not consistent with life.”
He clipped a few samples from the lesion, and with that he was largely done. The assistant, meanwhile, worked on, and with the brain exam finished, the pathologist soon joined him. They extracted meaty lungs and a big liver. Pus oozed out when the trachea was cut. All this suggested systemic infection. “At this point, I’d call it an even toss between infection and tumor,” the pathologist said. “If he tests positive for H.I.V., my money goes on infection.”
This initial exam of the organs took some 15 minutes. When they finished, the group spent another hour dissecting the organs. The exercise was now more educational than diagnostic, but the pathologist showed no sign of routine-induced boredom; on the contrary, he clearly enjoyed showing the residents the hidden adrenal glands, the chest-wall vessels sometimes used for coronary bypasses and the vagus nerve’s lacy, laddered course through the chest.
The full results would take several more days to come in. But they knew by the next day that the patient was H.I.V.-positive, and by the second day that the mass was not cancerous but an infection found mainly in immunocompromised patients like this one.
These findings had multilayered implications. That the man had H.I.V., for instance, would presumably mean something to any of his sexual partners. (Many states require the primary physician to contact sexual partners in such cases.) The rest of his family might find some relief in knowing that there was no tumor and that their own cancer risk was thus not raised. Beyond that, the case’s main epidemiological significance was its addition to evidence that infections form an ever-growing but oft-overlooked cause of death — another small correction in our assessment of what kills us. And that makes for better doctors. “You don’t learn these things all at once,” the pathologist said. “You learn a lot all at once in med school, sure. But after that, you become a better doctor by learning a little bit at a time. Incremental adjustments. That’s what makes us better doctors. And this is the place you learn them better than anywhere else.”
When a believer is in the full flush of describing autopsy’s gifts, when you witness how quickly and effectively the procedure delivers them, it’s easy to think that the autopsy will make a comeback. How could it not? At a time when medicine takes continuous fire regarding errors — politicians and patient advocates outraged at studies showing that 100,000 Americans die each year from medical errors, tort lawyers chasing mistakes on which to hang huge judgments, malpractice rates jumping at triple-digit rates — how can medicine ignore an instrument proven to detect error?
Yet it does. Other than hoping for a long shot, like Medicare or the Joint Commission on Accreditation of Healthcare setting autopsy-rate requirements, there is seemingly no quick return to routine autopsies. “We just have to do this one hospital at a time,” says Dr. Pat Lento, head of the autopsy service at Mount Sinai in New York. But most hospitals have no plans to revive the autopsy. And while physician organizations like the A.M.A. generally support the autopsy, most doctors don’t avail themselves of it. The sad truth is that most of medicine seems to have relegated the post-mortem to a cabinet of archaic tools, as if the body’s direct lessons no longer matter. In the end, the autopsy’s troubles resemble those in a medical case in which the causes stand clear and a cure stands ready, but the patient doesn’t take things seriously enough to pursue the fix.
***
Toward the end of the autopsy I saw of the man who died from an ignored infection, someone asked the assistant if he could really put him back together for a funeral. It was almost 2 p.m. and the man was in pieces. His torso was a big red bowl formed by his back ribs, his skin hung splayed on either side and his scalp was stretched inside-out over his face. The assistant smiled and said, “Oh, sure.” The pathologist added: “Absolutely! This guy could go to his wake tonight.”
And so it was. Unlike most things, an autopsied body can be put back together far more easily than it can be taken apart. It took less than half an hour to replace the breastplate and sew up the man’s torso; if he had a suit, it would fit as before and hide all. The skull cap all but snapped into place. The assistant rolled the man’s scalp back over his head and started to suture it up. When he was done, our patient looked pretty good indeed. It was remarkable, actually, after all we had found about what ailed him, that he should still gaze at the ceiling, unchanged and none the wiser.
Fewer Autopsies Mean Crucial Info Goes To The Grave : NPR
The New York Times > Magazine > Buried Answers
Very interesting story, thanks!
“the mass was not cancerous but an infection found mainly in immunocompromised patients like this one.”
so what was it? toxo, CMV, aspergillosis? Scary Disease Girl wants to know.
You would have to ask, wouldn’t you, dear colleague. I’d have to dig in my notes — I researched the story 7 years ago….
nah, don’t waste the time. i’m curious though why you didn’t just mention the name, whatever it was – did the editor feel it would have tugged the story off-track?
I can’t recall, to be honest, but I do know we were fighting for every word, so if they infection had a name that took more than two words to explain, we would have shortened to ‘infection’. Hard to believe for Germ Girl, I know, but …
actually almost exactly this situation just happened to me with a SciAm column – sacrificed the name of a disease-state because then it required 2 more lines to explain the significance, and i needed those 3 lines for something else. tyrannies of print.
You think they could fix that with some sort of electronic media or something…
If you research Eastern death and dying practices, the worst thing you can do is an autopsy right after someone’s died. It’s recommended not to touch the body for 3 days after clinical death. Current Western death and dying practices are bad enough; adding routine autopsies would only make things worse.
Respectfully, Eastern death and dying practices don’t really apply in the west. Yet. Find out why someone actually died. That is the purpose of an autopsy.
The idea is not to autopsy every single death or autopsy against anyone’s religious or traditional beliefs or practices. Autopsy rates are under 5%. 50% would provide immense benefit without intruding on beliefs/practices.
David Dobbs
via mobile
I’d prefer knowledge, to tell me why my loved one died, or to help advance science, medical error reduction, etc,
over ancient superstitions any day. Religion has already done enough damage to stall medical knowledge and advancements as it is, all throughout history.
Off topic, but one has to reeeeeally want to post a comment, remember and log on with rarely used passwords of accts never used, disabling pop up blockers, etc etc. (no, i don’t want to activate my email profile to start sharing stuff, lol) Too bad there is no option to just post a comment and add name as it is posted.
Dude, what stinky cave did you crawl out of?
Please to keep things civil. Thanks.
Great read, I found the method of scalp removal used in order to facilitate funerary preparations particularly clever.
What does an autopsy cost? Is there a reluctance to do them because of the cost?
Cost is a problem. An autopsy usually costs $2000-$5000. Formerly, hospitals absorbed these costs, which were sometimes offset partly by government contributions via Medicare or other programs. Among the few hospitals who still do autopsies routinely, many still absorb them. That was the case at the hospital where I watched the autopsy described above. They do it for the same reason they wash their hands: it’s good basic medicine. Federal regulators could force this issue by requiring a certain % of deaths be autopsied, as used to be the case, and providing funds via Medicare. But at this point, the lack of funding is a major issue, and as you can imagine, a stopper for many families if they are asked to pay that money atop hospital and funeral costs.
That’s the short answer. Longer answer is here, pulled from my Times Magazine feature (which you can find http://daviddobbs.net/articles/buried-answers-how-the-autopsys-death-harms-medicine.html):
Hospitals say the problem is money. An autopsy can cost from $2,000 to $4,000, and insurance won’t cover it. Most patient families blanch if asked to pay for it, and many can’t afford to after paying medical and funeral bills. So the hospital gets the tab. For most of the postwar period up to 1970, hospitals generally paid it, essentially because they had to: the Joint Commission on Accreditation of Healthcare Organizations required hospitals to maintain autopsy rates of at least 20 percent (25 percent for teaching hospitals), which, then and now, is the rate most advocates say is the minimum for monitoring diagnostic and hospital error.
The commission eliminated that requirement in 1970. Lundberg says that this happened because hospitals, which had already allowed the rate to drop to close to 20 percent since its 1950’s high of about 50 percent, wanted to let it drop further and pressured the commission. The commission’s current president, Dr. Dennis S. O’Leary, says it eliminated the standard because too many hospitals were doing poor autopsies — and often only the cheapest, simplest ones — just to make the quota.
In any event, few hospitals have paid for autopsies since then. Money is too scarce, they say, the needs of living patients too great.But this argument fails scrutiny. For starters, hospitals do get money for autopsies: Medicare includes an autopsy allowance in the lump sum it pays hospitals for each Medicare inpatient, and those patients account for three-quarters of all hospital deaths. This money could easily finance double-digit autopsy rates. But most hospitals spend it on other things. Lundberg and others have urged the Department of Health and Human Services to make Medicare payments contingent on hospitals’ meeting a certain autopsy rate. But the agency shows no interest in doing so.
The hospitals’ dodge on this issue reveals less about finance than about attitude. They have the money. They don’t use it for autopsies because they don’t value autopsies. The hospitals that do — teaching hospitals like New York’s Mount Sinai; Dartmouth-Hitchcock Medical Center, in Lebanon, N.H.; and Baylor University Medical Center, in Dallas — manage to absorb the costs. Their lobbies may not be as nice. But they have a much better idea where their errors are.
”People sometimes ask me how good a hospital is,” Lundberg says. ”With most hospitals, the answer is that no one knows — because the hospital has no way to know how many and what kinds of mistakes they make.”
how on earth does it cost that much? can’t this be subsidized by the schools that send in medical students? i see the main cost being that a medical professional has to be on the floor for this, plus washing the tools, so thats parts and labor, but according to your article, everyone and their mom watches these things. seems there’s a lot of spare time to be had.
Instead of giving an autopsy allowance to all hospitals, they should give an allowance based on how many autopsies the hospital does or agrees to do.
Hospitals don’t want to spend the money money to do autopsies unless they’re looking at or involved in a lawsuit. After all, they might find that they did something wrong (shocking, I know that never happens) and open themselves up for a potential lawsuit.
The healthcare industry is primarily in a mess because of the tug of war between greedy malpractice lawyers and greedy insurance companies. The lawyers push for big payday lawsuits for minor things which causes some states to put caps on malpractice damages which really hurts those with serious, long term issues from poor healthcare.
Insurance companies charge crippling premiums firstly because they’re greedy and secondly as a response to the greedy lawyers.
The hospitals are mostly caught in the middle but tend to also be greedy and indifferent to much besides their profit margins. But the hospitals do make mistakes and when they do, often they will try to cover up their mistakes. Doctors often do the same and in many places it can be very hard to find a doctor to testify in court against another doctor who ruined or ended someone’s life due to incompetence.
Then you have bad healthcare professionals who cause most of the malpractice. I’m not talking about legitimate accidents. I’m talking about bad doctors, nurses or other healthcare professionals who consistently make mistakes for whatever reason. For every good doctor out there there are tons of mediocre and far too many bad ones.
Finally you have the AMA and other organizations that fight things such as a required, national registry of malpractice that would weed out bad healthcare professionals who’s mistakes are often swept under the rug by hospitals. These quacks are either allowed to continue employment there or are let go and find employment elsewhere. At worst they lose their license and simply move to another state and start hurting patients there.
And at the shit end of the stick are the good doctors and all of us patients. At the mercy of greed, profits and politicians that take bribes to pass legislation that further degrades the quality of healthcare or blocks legislation that aims to improve it.
It’s simple. More autopsies = more errors detected. More errors detected = more lawsuits.
Therefore, less autopsies.
It is actually not quite that simple. Studies have shown that doing autopsies does not tend to provoke more lawsuits. Lawsuits rise less from the simple existence of mistakes than they do from breakdowns in communication and trust between Dr. and patient. The full story, link above, has more detailed information on what actually seems to discourage the use of autopsies.
Thanks everyone for reading and commenting.
David Dobbs
via mobile
My father just died of something like Parkinson’s, but there are no plans to see what actually happened to his brain before he is cremated. I agree that this is a stupid waste of evidence that might have serious significance to me and my family. But I am not going to stress out my mother any more than she already is.
Part of the answer may be a voluntary program, like donating your organs. A check mark on your driver license would indicate your willingness to be subject to autopsy, especially if there was anything unusual about your death. By analyzing a lot of otherwise healthy bodies, researchers could accumulate data on long-term exposure to various toxins in various tissues. It’s one thing to know what killed somebody old. Wouldn’t it be nice to have some idea what would probably kill somebody twenty years later?
I see no reason your mother would need be concerned with the autopsy. She could just agree to it and have it never mentioned to her again.
very interesting topic, raises a lot of questions concerning our medical system.
Makes me think that Alzheimer Disease (AD) can be declared ONLY with the autopsy…. How many people are given drugs to cure AD while it could be any other dementia?
The full story (http://daviddobbs.net/articles/buried-answers-how-the-autopsys-death-harms-medicine.html) tells of a case — a pathologist’s mother, as it happens — in which the diagnosis at death was Alzheimer’s. The pathologist convinced his siblings to have mom autopsied. The autopsy found she did NOT have Alzheimer’s, but rather a dementia broiught on by many small strokes – extremely important and actionable information for the pathologist and his siblings. That story opens the story, is actually quite funny: the pathologist having to convince his sibs to autopsy their mom.
My personal medical opinion with regard to the epidemiology of Alzheimer’s disease is that it is horribly over and misdiagnosed. The only way this will be rectified is by getting more physicians to be diligent in adequately studying patient’s with dementia. Many have stories such as the mother of the pathologist. Many more have even more tragic ones involving things as simple as over medicating geriatric patients and accidental overdosing from over-the-counter medications in the same population. Geriatric dosing is not the same as adult dosing. Encouraging more autopsies for so called “Alzheimer” patient’s would absolutely help in the overall approach taken to diagnosing and caring for dementia patients.
Exactly so, eclictice_MD. Diagnoses of elimination, like Alzheimer’s, are ripe for overdiagnosis, and the trend can be readily checked by autopsies. It’s precisely the sort of thing autopsies are so essential for correcting.
Beautifully written article David. Autopsy is an essential part of medical practice. I agree with you that it isn’t necessarily a gift to trial lawyers to encourage more of them.
Maryn poises an interesting question. Having had a good deal of experience with AIDS patient’s during my training, my guess is that the individual you present in your article, the one that you witnessed the autopsy of first hand, had toxoplasmosis.
When I was a medical student, as a 3rd year clerk in 1989-1990, one of the most bizarre cases I have ever dealt with presented itself on the medical ward of Kings County Hospital. The gentleman was a recent immigrant from West Africa, heterosexual, and with almost no risk factors. He was completely psychotic from the time I started taking care of him, flailing about and requiring restraint 24 hours a day. He turned out to be HIV+. Prior to his death, I was able to get a scan of his brain using a technique that had previously never been done on this type of patient, SPECT or “Single Positron Emission Tomography”. MRI of his brain showed essentially nothing. The SPECT scan revealed what was going on, Progressive Leukencephalopathy caused by his immune systems attack on his brains infection with HIV. He succumbed to this within a week of the scan. I tried very hard to convince his family of the importance of obtaining an autopsy. Sadly, they refused. The newer scan definitely helped determine his diagnosis. However, much more would have been learned had we been able to get the autopsy.
Nice story. New tech can help — but as you doubtless know, cannot replace the autopsy; for now, that’s a false hope. Here’s the passage from my full story addressing that question. I love “We have to remind him we held the heart in our hands.”
Full story at http://daviddobbs.net/articles/buried-answers-how-the-autopsys-death-harms-medicine.htmlPerhaps the most troubling reason for the decline of the autopsy is the overconfidence that doctors — and patients — have in M.R.I.’s and other high-tech diagnostic technologies. Bill Pellan of the Pinellas County medical examiner’s office says: ”We get this all the time. The doctor will get our report and call and say: ‘But there can’t be a lacerated aorta. We did a whole set of scans.’ We have to remind him we held the heart in our hands.” In fact, advanced diagnostic tools do miss critical problems and actually produce more false-negative diagnoses than older methods, probably because doctors accept results too readily. One study of diagnostic errors made from 1959 to 1989 (the period that brought us CAT scans, M.R.I.’s and many other high-tech diagnostics) found that while false-positive diagnoses remained about 10 percent during that time, false-negative diagnoses — that is, when a condition is erroneously ruled out — rose from 24 percent to 34 percent. Another study found that errors occur at the same rate regardless of whether sophisticated diagnostic tools are used. Yet doctors routinely dismiss possible diagnoses because high-tech tools show negative results. One of my own family doctors told me that he rarely asks for an autopsy because ”with M.R.I.’s and CAT scans and everything else, we usually know why they died.”
This sense of omniscience, Lundberg says, is part of ”a vast cultural delusion.” At his most incensed, Lundberg says he feels that his fellow doctors simply don’t want to face their own fallibility. But Lundberg’s indictment is even broader. The autopsy’s decline reflects not just individual arrogance, but also the general state of health care: the increasing distance and unease between doctors and patients and their families, a pervasive fear of lawsuits, our denial of age and death and, especially, our credulous infatuation with technology. Our doctors’ overconfidence, less bigheaded than blithe, is part of the medicine we’ve come to expect.
David,
I couldn’t agree with you more! Sorry if I didn’t make the same point as strongly as I had hoped in the anecdote I shared with everyone.
Your writing is outstanding. Wish I could say the same for mine. Both you and Maryn are journalistic assets I appreciate in the extreme!
Thank you for your emails. They are completely welcome and encouraged. If I can help you in your professional writing by answering medical questions, please feel free to ask. You may pass that along to Ms. McKenna as well.
John
John Ernest Horwath Sherry, II, M.Sc., M.D.
It would be good additional info to know: how does one request an autopsy, what the typical cost is, what the time to perform it from request date is, and whether the city or some other agency can perform it?
Some of this varies by hospital and area. In general:
– cost runs ~$2000-$5000. Some teaching hospitals pick up some or all of this. In NYC, anyone requesting an autopsy from the NYC Medical Examiner’s office will get it and get it free.
– They are usually done asap, within a day after death.
– In some cities or states, city or state medical examiners do the procedure; though in many (perhaps most), those are limited to touchy or criminal cases. More commonly a hospital pathologist will do it.
Well written Mr. Dobbs! I still have vivid memories of observing autopsies as a medical student 40 years ago and how much we learned and how much we appreciated the patients who contributed. Your discussion with Ms. McKenna may explain one of my pet peeves with medical/scientific articles in the popular press. Often a potentially important scientific or medical finding is described more or less adequately without ever mentioning the journal in which it is to be found. Frustrating. Thank heaven we now have Google and Medline.