DC Medical Malpractice & Patient Safety Blog

Last week we reported about the shockingly deficient numbers of hospitals that do not conduct autopsies, and, as a result, miss important diagnostic and/or treatment lessons from the results.

In a related and equally disturbing reality, when elderly people die under suspicious circumstances, the reasons often remain unknown because autopsies are seldom performed on people older than 65. The investigative report by ProPublica and PBS Frontline says that no one knows how many of these suspicious deaths have been ascribed to “natural” fatalities, and how many, in fact, were the result of elder abuse or mistreatment. The report quotes a U.S. Department of Justice researcher describing the situation as “a hidden national scandal.”

The system of investigating the cause of suspicious deaths is compromised by insufficient funds, a shortage of trained medical personnel and lack of national standards that, the writers conclude, sometimes have “helped to send innocent people to prison and allowed killers to walk free. When it comes to the elderly, the system errs by omission.”

Specifically, here’s how the system discourages appropriate scrutiny of senior citizen deaths:

• When treating physicians report that a death is natural, coroners and medical examiners almost never investigate. But doctors often get it wrong: Nearly half the doctors in one study failed to identify the correct cause of death for an elderly patient with a brain injury caused by a fall.


• In most states, doctors can write out a death certificate without ever seeing the body.


• Autopsies of seniors have become increasingly rare. People older than 65 represented about 6 in 10 U.S. deaths and 3.5 in 10 autopsied deaths in 1972. A generation later, seniors accounted for 7 in 10 deaths, but fewer than 2 in 10 autopsied deaths. Of the 1.8 million seniors who died in 2008, post-mortem exams were performed on only 36,000.

The ProPublica/Frontline story reports about one death a doctor attributed to clogged arteries and heart failure, but which, thanks to a tip by a nursing home worker, prompted state officials to re-examine. They concluded that the death was due to a combination of ailments often related to poor care—an infected ulcer, pneumonia, dehydration and sepsis. They said the patient’s demise was hastened by the inappropriate administration of powerful antipsychotic drugs, which can have potentially lethal side effects for seniors.

Prosecutors ended up charging the physician and two former colleagues with killing the patient and two other elderly residents.

In another case, the death was attributed to "failure to thrive" due to "dementia." The physician who signed the death certificate hadn't seen the patient for 13 days before he died. She never saw his corpse.

Only when the director of the funeral home that was preparing his body for burial spoke up was it discovered how wrong was the official cause of death. "I'm no CSI expert, but I've been doing this for 25 years, and I've seen a lot of dead people," the funeral home official said. "He was all bruised up and purple, and his ribs were all broken."

He contacted the coroner's office, and an autopsy showed that some kind of violent impact had snapped five ribs. One of the broken bones had pierced the patient’s left lung, flooding his chest with blood. The damage was fatal. His case, too, resulted in criminal prosecution of a nursing home employee.

The reporters identified more than three-dozen cases “in which the alleged neglect, abuse or even murder of seniors eluded authorities. But for the intervention of whistleblowers, concerned relatives and others, the truth about these deaths might never have come to light.”

State laws rely on doctors to separate extraordinary fatalities from routine ones, principally by what they record on death certificates. When a doctor encounters an unusual fatality—a death that might have been caused by homicide, suicide or accident—the physician must report it to the coroner or medical examiner for further investigation.

But death certificates are frequently erroneous or incomplete; one study published last year found that nearly half of 371 Florida death certificates surveyed had errors in them. Doctors without training in forensics often have trouble determining which cases should be referred to a coroner or medical examiner.

Robert Anderson, chief of mortality statistics for the Centers for Disease Control and Prevention, said some doctors don't grasp the significance of death certificates. "I've had instances where the physician just doesn't understand the importance of what they're writing down," he told ProPublica/Frontline. "I'm appalled when I hear that."

Part of the problem is age bias—the death of an older person is accepted much more readily than someone younger—and part of the problem is a lack of resources. Coroners and medical examiners can’t keep up with the number of bodies to be autopsied as it is. Bringing in more seniors exacerbates the problem.

Article first published as Our Nation's Hidden Elderly Deaths Scandal on Technorati.

A new research study gives hope that some patients who seem to be in a coma, or persistent vegetative state, may actually be aware of their surroundings and can communicate on a rudimentary level.

The even better news is that misdiagnosis of these patients, which studies suggest may be common, can be corrected by use of a simple, cheap and widely available brain wave test called the EEG, electroencephalogram.

The study was reported in the online edition of the prestigious British medical journal The Lancet.

Many patients who seem to be completely unaware of their surroundings after a brain injury do not show any response to this new kind of testing. But of the 16 patients tested in the new study, three patients did show a response, indicating that they had been misdiagnosed and should be reclassified as "minimally conscious."

The researchers gave the seemingly vegetative patients two simple tasks: imagine moving a right finger, and then imagine moving a right toe. The patients who passed the test were able to generate specific, repeatable brain wave responses in the same area of the brain, the pre-motor cortex, as normal healthy control patients could do with the same testing.

Other researchers have found that putting patients like this into MRI machines for functional MRI (f-MRI) testing also can show results that indicate the apparently unresponsive patient actually has a response deep within the brain. The brains of some of these patients light up in specific places on the f-MRI test when they are asked to imagine some specific athletic activity like playing tennis.

The problem with f-MRI testing is it's expensive and requires the patient to be transported to a radiology center.

Here is the conclusion of the authors of the EEG study:

Despite rigorous clinical assessment, many patients in the vegetative state are misdiagnosed. The EEG method that we developed is cheap, portable, widely available, and objective. It could allow the widespread use of this bedside technique for the rediagnosis of patients who behaviourally seem to be entirely vegetative, but who might have residual cognitive function and conscious awareness.

Brain scientists are excited that if these results hold up, we may have a way to communicate with some of the 25,000 Americans who lie in beds seemingly unaware but actually with something going on inside.

Article first published as New Hope for Communicating with Patients in a "Vegetative State" on Technorati.

There's no shortage of stories about the dire effects of a missed diagnosis. But what about the repercussions of a false diagnosis?

Two doctors writing on MedPage Today say that the medical industrial complex should be equally concerned about the number of patients diagnosed with a specific disease who do not, in fact, suffer from it. "How prevalent are false diagnoses of disease?" they ask. "And which ones?"

Clifton Meador, M.D., and George Lundberg, M.D., previously have raised the flag of inquiry into how anyone can accurately assess a diagnostic process in light of increasing numbers of people described as "well and worried well" who seek medical treatment. A troubling aspect of "this influx of well people," they say, is an increasing number of test results that show false positives--the indication of a problem when there isn't one--and its corollary, false diagnosis of nonexistent disease.

If you don't have an accurate picture of the incidence, demographics and nature of a disease or disorder, you can't organize the most effective response to it. Or the most cost-effective--you'd have to live on Jupiter to be unaware of the escalating cost of medical care.

As the MedPage authors point out, medical literature "is filled with studies on the accuracy of specific disease diagnoses but the focus has been exclusively on missed diagnoses." A common metric of analysis here is data from autopsies to determine how many patients died while suffering from a specific disease that was overlooked while they were alive.

Why, they want to know, don't we seem to care about the flip side of that review? That is, how many people were falsely diagnosed with a specific disease while alive that wasn't in evidence upon their death?

They found only one paper that examines the prevalence of false diagnoses of a specific disease within a defined population. It concluded that four times as much disability came from the false label "heart disease" as from actual heart disease.

This isn't about the occasional hypochondriac who seeks medical attention because other forms of attention are lacking in that person's life. False positives and overdiagnosis have consequences. For a person who has been diagnosed with a nonexistent disease:

• The patient starts on the conveyor belt of further testing and treatment, which can bring their own side effects and complications.


• The disease cannot progress because it does not exist.


• The patient is often satisfied to have a name, any name, for his or her problem, even if the disease does not exist.


• The doctor is satisfied to have named the condition, believing the diagnosis to be correct.


• The false positive test result leading to the diagnosis may become negative when repeated in the future, reassuring the patient and the doctor that the "disease" is in remission or is a mild form. But unless the patient sees another doctor who doubts the false diagnosis and repeats the testing, the false diagnosis will persist.

"Our 50 years in medicine tells us that this error is common," say Meador and Lundberg,"and that it is very difficult to remove a false diagnosis of any disease.

If the question about why scientists and their enablers ignore errors of false diagnosis remains unanswered, at least you, the patient, can help disrupt the cycle of false diagnosis/overtreatment/financial waste by:

• considering the possibility that you might not be unwell, only worried about being unwell;


• keeping complete records of symptoms of illness--what they are, when they occur, patterns about when and under what circumstances they appear and subside;


• asking your doctor what else can cause your discomfort besides the problem she has diagnosed;


• seeking a second opinion; and


• consulting a psychological therapist to examine if physical symptoms can be the result of emotional disturbance.

Doctors who aren't directly involved in patient safety issues often sail through their careers without much awareness of how commonly errors and malpractice infect hospitals, clinics and medical offices. Then they become patients, and suddenly their world is turned upside down.

Itzhak Brook, M.D., has been a doctor for more than 40 years. He is an infectious disease pediatrician at Georgetown University Hospital in Washington, D.C. Then he got throat cancer a few years ago.

His cancer was successfully removed, but then it came back. He had to have his voice box -- the larynx -- removed, and the throat was reconstructed.

It was then that the errors began to pile up, or, as he puts it, “mistakes occurred at all levels of my care.”

Dr. Brook recorded these incidents before, during and after his surgery:

* Surgeons had failed to timely diagnose the recurrence of his cancer. It was finally observed by an astute resident via a basic procedure that allowed visualization of the pyriform sinus, which was where his tumor was located. Had his experienced surgeons done the same basic procedure, his tumor most likely would have been observed and removed much earlier.

* Surgeons mistakenly removed scar tissue instead of the cancerous lesion. A week after the surgery, pathological studies revealed that the tumor was actually farther down in the pyriform sinus. This error could have been avoided if frozen sections of the lesion itself, not just its margins, had been analyzed in the operating room. As a result, he had to undergo additional surgery to remove the tumor, which was more difficult because of swelling and changes to the surgical site due to the original operation.

* While still in the ICU one day after surgery, he experienced an airway obstruction and couldn’t find his call button, which had fallen on the floor. Though he was only a few feet away from the nurses station, he was unable to get the attention of staff but was ignored. (He couldn’t call out because he no longer had a larynx).

* In what was probably the most serious error, he was fed soft food by mouth far too early, which, following laryngectomy with flap reconstruction, can lead to failure of integration by the flap. It took 16 hours before the feeding was stopped, and only after Dr. Brook brought this to the attention of a senior surgeon. The error occurred because the order to start feeding was in fact intended for another patient.

In addition, nurses and other staff:

Did not clean or wash their hands.

Did not use gloves.

Took oral temperature without placing the thermometer in a plastic sheath.

Used an inappropriately sized blood pressure cuff (which produced alarming readings).

Attempted to administer medications by mouth intended to be given by nasogastric tube.

Dissolved pills in hot water and fed them through the feeding tube (thus irritating the esophagus).

Delivered an incorrect dose of a medication.

Connected a suction machine directly to the port in the wall without a bottle of water.

Forgot to rinse the hydrogen peroxide used for cleaning the tracheal breathing tube (causing
severe irritation).

Did not write down verbal orders.

Fortunately, despite all these errors, Dr. Brook did not suffer any long-term consequences. Still, his experience made him realize that a hospital is the least safe place for patients, and that all hospitalized patients should have a dedicated patient advocate such as a family member or a friend at their bedside.

Dr. Brook writes extensively about his experiences as a throat cancer patient on his blog. He also lectures to medical groups to try to get doctors and nurses to understand the human costs of the epidemic of medical error.

You can also read Dr. Brook’s account of his hospital experiences in the Journal of Participatory Medicine.

When you see a specialist, you expect to hear from an expert who will diagnose your condition and then recommend the appropriate treatment. But that may not be the case, especially if you’re dealing with gastroenterologists and your symptoms appear to resemble those of Barrett’s Esophagus, a condition in which the lining of the esophagus is damaged by stomach acid.

When gastroenterologists were asked in a survey to cite the criteria for diagnosing and managing Barrett’s, most gave answers that differed from published guidelines, suggesting overdiagnosis and an excessive burden on patients.

Barrett's can be a precursor to cancer of the esophagus. It happens with repeated episodes of reflux when stomach acid is expelled upward into the esophagus. Typically the lower part of the esophagus closer to the stomach becomes chronically inflamed. Heartburn is the usual symptom from these repeated episodes of reflux, or even difficulty swallowing.

Under a microscope, Barrett's is diagnosed when a biopsy from the esophagus shows that the normal cells have been transformed into "dysplastic" or precancerous cells. The cells look more like those seen in the colon than those that should be lining the upper part of the gastrointestinal system.

In the survey of 261 gastroenterologists presented last week at Digestive Disease Week in Chicago, 23% failed to name the only criterion for Barrett’s endorsed by the official American College of Gastroenterology (ACG) practice guideline, while more than half listed other criteria.

Furthermore, about a third said they perform follow-up exams in patients with non-dysplastic Barrett’s more frequently than the 3-year interval recommended by the ACG.

The ACG guideline defines Barrett's as a change in the lower lining of the esophagus of any length to a columnar-type mucosa, with biopsy confirmation as intestinal metaplasia. Although 77% of respondents correctly indicated that such a finding would be adequate for a diagnosis of Barrett’s, respondents could name multiple criteria and a substantial number endorsed one or more criteria not included in the ACG guideline including (1) irregular-appearing squamocolumnar junction with biopsy finding of intestinal metaplasia (47%); normal-appearing squamocolumnar junction with biopsy finding of intestinal metaplasia (22%); visible columnar-type mucosa above the gastroesophageal junction (17%) and irregular-appearing squamocolumnar junction without biopsy ( 3%).

The guideline also indicates that, for nondysplastic Barrett's esophagus, follow-up endoscopy should be performed every three years. This interval was seconded by 55% of respondents in the survey. Some 34% respondents indicated that they perform endoscopies in such cases every one or two years, while another 9% said their preferred follow-up interval varied, depending on the length of the dysplastic segment.

The survey also found that, compared with salaried physicians, those with "productivity-based incomes" were significantly more likely to perform endoscopies at 1- or 2-year intervals in nondysplastic patients.

Source: MedPage Today

Reference: “Poor compliance with guidelines in the diagnosis and management of Barrett's esophagus" DDW 2011; Abstract Sa1064.

Juries in Erie, Pa., last week returned substantial - and in the first case, record - verdicts on consecutive days in favor of the plaintiffs in two malpractices cases. One day after a jury gave $21.6 million - the largest malpractice verdict in the county’s history - to an Erie mother and her son over his botched delivery in 2006, another jury at the same courthouse returned a $1.8 million verdict in favor of the estate of a woman who died of lung cancer at age 66 in April 2005.

The first case began in 2006, when a mother went to the then Hamot Medical Center to have fraternal twins. The daughter was born normal but the son had severe brain damage. The jury agreed with the boy’s mother that the hospital's nursing staff was unprepared for complications arising from a breach birth and didn't do enough to prevent oxygen deprivation that left the boy unable to speak and requiring feeding through a tube.

The verdict includes $19.6 million to provide for the boy's future medical expenses. The rest covers past medical expenses and the boy's lost lifetime earning capacity. The hospital's attorney declined to comment on the verdict or whether the hospital will appeal.

The next day, a second jury determined that physicians treating Carolyn Champlin failed to properly diagnose and treat her lung cancer and returned a $1.8 million verdict. Champlin died in April 2005.

Her estate maintained that physicians in Erie and Kane failed to properly diagnose and treat the cancer. Champlin had received chest X-rays at Hamot and two other hospitals between 1998 and 2003. One of the plaintiff’s lawyers said after the verdict that the evidence showed Champlin had cancer in 2000, but was not properly diagnosed for 3 years. During that time, the lung cancer went from operable and curable to inoperable and incurable.

The jury agreed and found the two physicians negligent - her longtime primary-care doctor and a thoracic surgeon to whom she was referred. The estate settled with the surgeon before the trial ended. As a result, the jury verdict of $1,821,529 was reduced by 40% (the amount of the negligence attributed to the surgeon).
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Source: Erie Times-News and WICU-12

The Third Circuit Court of Appeal in Louisiana has ruled the state’s $500,000 malpractice cap to be unconstitutional.

Joe and Helena Oliver had sought relief from the Louisiana Medical Malpractice Act, which shrank the damage award their daughter received for disfiguring injuries from $6.2 million to $500,000.

Their daughter, Taylor, developed severe injuries after she was treated by a “grandfathered” nurse practitioner who was practicing with only a high school diploma. Susan Duhon, a registered nurse practitioner and sole owner of the Magnolia Clinic, treated Taylor for vomiting, nausea and diarrhea. Taylor visited the clinic 32 times, and Duhon prescribed more than 30 medications. Duhon had a statutory duty to consult a physician, but Taylor never saw one during any of her visits.

When Taylor was 14 months old, another hospital diagnosed her with neuroblastoma, a childhood cancer. One of the signs is severe bruising around the eyes, a symptom Taylor had presented with at the Magnolia Clinic when she was 6 months old.

If neuroblastoma is diagnosed within the first year of life, the child has a 90 percent chance of an event-free recovery. But because of the delayed diagnosis, the quality of Taylor's life has been severely diminished. Though she survived the cancer, the tumor caused her head to become misshapen. In addition, her eyes are abnormally large and she is legally blind.

The Olivers won their medical malpractice lawsuit, but their $6.2 million award was cut to $500,000 under Louisiana state law. The appeals court ruled that the cap on malpractice damages is unconstitutional, noting that “the cap discriminates against Taylor and her parents by limiting their general damage recovery to a single $500,000 payment, while allowing other less severely injured victims to fully recover their general damage awards."

In another case, the same appeals court reversed a jury decision and awarded $400,000 in damages to a man who lost all vision in one eye after a cataract operation. The case involved cataract surgery performed in 2002 by ophthalmologist Ernesto Kufoy on Ronald Bianchi. During the surgery to remove the cataract and implant an artificial lens, the lining of the old lens was torn and a second artificial lens was implanted.

After the surgery, Bianchi reported worsening pain and vision loss. After a malpractice suit was filed in 2002, a medical review panel found malpractice on Kufoy’s part. (Kufoy did not chart his treatment of Bianchi and had no medical records to support his testimony.)

A jury trial in December 2009 determined that Kufoy had breached the standard of care, but the jury did not award damages because it did not find proof of cause. However, the Third Circuit Court of Appeal found there was no factual basis to support the jury’s verdict and called it “manifestly erroneous.”

The court overruled the jury’s verdict and awarded Bianchi and his wife $100,000 for past and future medical expenses and $300,000 in general damages. The cost of the appeal also was assessed to the defendant.

Sources: Beauregard Daily News for the Bianchi case.

Courthouse News Service for the Oliver case.

The headline is not exactly shocking, so the real news may be why the issue of how long work days can cause doctors to make errors is so rarely studied.

For nurses and residents (doctors in training), plenty of studies have found that when work days stretch beyond twelve hours, more mistakes are made, and patients become vulnerable to malpractice and even smaller errors.

But a new study of radiologists is one of the first to examine the effect of long work days on the performance of attending level physicians. The researchers gave a set of bone X-rays to radiologists at the beginning of their work day, and again at the end. Then they measured their accuracy at finding fractures. By the end of the day, the radiologists were making around one in twenty more errors -- both missing fractures and seeing ones that weren't there -- than at the start of the day. It's a small but significant difference.

The study in the radiology journal concluded:

"After a day of clinical reading, radiologists have reduced ability to focus, increased symptoms of fatigue and oculomotor strain, and reduced ability to detect fractures."

Dr. Bob Wachter, a UCSF patient safety guru, has a thoughtful piece on this in his own blog, which he titled: Tugging on Superman's Cape. Read it here.

Dr. Wachter riffed off a story he heard about legendary heart surgeon Michael Debakey performing sixteen open heart surgeries in a single day, even in his eighties. While the Baylor staffer who told Wachter this story was awestruck at Debakey's stamina, Wachter wondered what it would be like to be patient No. 16.

For the rest of us, there's a lesson when facing elective surgery. Surgeons love to stack up patients back to back and operate from the early morning to late in the day. If we have any choice, we should opt for a place early in the queue. Why tempt the gods of fatigue?

Article first published as Fatigue Wears at Doctors' Work Performance Too on Technorati.

There are no simple diagnostic tests for sepsis - an out-of-control reaction to infection that can start shutting down organs in mere hours - but there are warning signs if healthcare providers pay close enough attention, according to Dr. James O’Brien, a critical care specialist at Ohio State University Medical Center.

“Minutes matter,” O'Brien says, noting that delays are too often simply a case of “not treating this like a medical emergency.” Millions of people around the world die from sepsis each year, and 30% of sepsis cases in the U.S. result in death.

The early symptoms of sepsis can be vague: confusion, shortness of breath, an increase in the heart rate, falling blood pressure and weakness, all of which could be caused for many other reasons. But the combination of symptoms without a clear benign cause is reason for aggressive care.

Sepsis occurs when the body overreacts while fighting an infection and damages its own tissues, which in turn can lead to shock and organ failure. Complex interactions between the microbe and the immune system cause the immune system to overreact to the point that even if the bacteria is eradicated, the damage continues to spread due to the toxic reaction of the immune system.

To better combat this deadly reaction, international sepsis experts recently formed a Global Sepsis Alliance to urge more aggressive care. The alliance wants hospitals to start antibiotics and intravenous fluids within an hour of suspicion of sepsis, as every hour of delay lowers survival by nearly 8 percent. Currently, many hospitals don’t begin appropriate care for four or even six hours, O’Brien says.

Scientists in Portugal, meanwhile, may have found an important clue as to what fuels sepsis, which is estimated to kill more than 200,000 Americans annually. During sepsis, red blood cells can become injured and leak an iron-based substance called heme that's normally part of the hemoglobin that carries oxygen.

But when it leaks into the bloodstream at the same time the body is experiencing lots of inflammation — a given during sepsis — the heme becomes toxic to organs. In a series of experiments with infected mice, the researchers showed that extrame heme leads to more deaths.

Although the body manufactures a molecule called hemopexin to clean up leaky heme, the level of hemopexin dropped as heme levels rose. When the researchers injected more hemopexin, more mice survived.

More research is needed to confirm the findings, the study authors say.

Source: Associated Press

To learn more about the global sepsis alliance, go here:

Some cancer screening tests have been so well proven to save lives, like the colonoscopy, that if you don't get one, you need more than your colon examined (to borrow from an old Cancer Society slogan about mammograms). But it's now clear that mammograms don't fit into guilt-trip status anymore. Using radiation to find lumps in the breast that are too small to feel with your hands has only a slight benefit.

Here are the numbers from the latest analysis in the New England Journal of Medicine. For every 2,500 women in the prime screening age group -- 50 to 69 -- you would need to give all 2,500 a mammogram at least every couple of years for ten years to save a single life. And in the process, 1,000 of the same women would turn up with a suspicious result, 500 of those would need a surgical biopsy, and five to fifteen of those would get cancers removed, and maybe entire breasts, that if left alone would never threaten the patient.

The medical journal analysis was written by Dartmouth medical school Dr. Gilbert Welch, who has long been a skeptic of the mammogram as a sacred cow of must-do medicine.

That means that the decision to have a screening mammogram is very much up to the individual. Some may want to take the risk of becoming an unnecessary patient to avoid the deadly but small risk of a preventable death from breast cancer. Others will prefer the option that seems to work better: Good vigilance and attention to small lumps, and then if a cancer develops, make sure you're in the hands of a multi-disciplinary team of cancer doctors who specialize in the latest treatments.

Here's an article by Gina Kolata about the latest study from Norway, in the New York Times.

And here's what the National Breast Cancer Coalition has to say about the myths and truths of breast cancer.

A long article in the New York Times brings home the dangers of women undergoing disfiguring surgery or radiation for breast cancer they never had. The story is a familiar one to malpractice attorneys but not well enough known to the public: The critical job of determining if breast tissue is cancerous or not is sometimes left in the hands of inexperienced pathologists who are prone to error.

The problem is worse with diagnosis of "ductal carcinoma in situ" (DCIS), an early form of cancer that may or may not progress to truly invasive cancer. The criteria for DCIS are sometimes subtle and not all pathologists agree on them.

What can patients do to protect themselves?

As I write in my book, "The Life You Save," you should never have any kind of cancer surgery without at least one second opinion on the biopsy. You can have a top cancer pathologist review your tissue slides for a cost of at most a few hundred dollars, and it might even be covered by your insurance.

Second, make sure the pathologist who interprets your specimen has enough experience. The College of American Pathologists now says 250 cases a year are the minimum for competence in this field, and it is starting a special certification program for breast cancer pathology.

The Times' article features Monica Long, a nurse in northern Michigan who had disfiguring breast surgery for DCIS, only to learn later that she never had it. She also learned too late that the pathologist at her hospital had only seen 50 cases a year and was not yet certified in any kind of pathology when he gave the reading on her tissue.

Some women get so scared by the diagnosis of DCIS that they have BOTH breasts removed. As previously reported in this blog, having a healthy breast removed does not improve a woman's statistical odds of survival. And as many as two out of three cases of DCIS never progress to full-fledged cancer. But such is the power of the "C" word to frighten people into doing anything -- even undergoing mutilation unnecessarily -- to try to stay alive.

This makes it all the more imperative for the pathology community to develop better criteria for the diagnosis of DCIS, and to improve the certification program so that this scary diagnosis is not made unless it's truly warranted.

The Times' "Well" blog has compelling accounts written in by other patients. Click here to browse them.

Reading these stories compels me to make another point: Unless you are financially destitute, I think it's a bad idea to let insurance coverage drive important medical decisions. If the insurance company won't pay for getting a second reading on the biopsy, scrape up the dough and get it done yourself. You'll be glad you did.

Among other second opinion providers, the Armed Forces Institute of Pathology in Washington, DC, gives second readings at a modest cost.

Every hospital patient needs someone with them at all times to help prevent medical errors and keep them safe. That's a mantra I have advocated for years, and another example of why it's good advice comes with a riveting story in the Washington Post by health writer Sandra Boodman.

Ms. Boodman's article tells how a Washington area woman's advocacy in the emergency room and hospital helped lead to a correct diagnosis of baffling symptoms, and likely saved her sick daughter from harm. The article interviews Patricia Dawn about her 4-year-old daughter Brooke's illness, that was eventually discovered to be Kawasaki disease, an unusual heart condition.

Brooke got the right treatment in time, but only because of her mother's persistence. Mrs. Dawn refused the recommendation of the emergency room doctors to take her daughter home at 2 a.m. when she wasn't feeling any better but they had run out of things to do. At her insistence, her daughter was hospitalized, and an infectious disease specialist eventually figured out that the red lips, red eyes, fever longer than five days, and swollen lymph node in the neck all were signs of Kawasaki, which affects about 2,000 American children a year.

It was also at the family's suggestion that the infectious disease doctor was brought in who made the correct diagnosis.

The story underlines the importance of having a good advocate present at all times with a patient in the hospital. Even a lay advocate can see when symptoms aren't improving and can insist on action.

I discuss this subject in depth in Chapter 12 of my book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst."

That question was asked in a New York Times column by Dr. Pauline Chen, and her column prompted a number of thoughtful comments by both doctors and patients. Clear communication is a critical element to good diagnosis, and that puts burdens on both doctors and patients.

Some of the comments on the column which I found most helpful:

I think the most important thing to avoid missed diagnosis is to improve the communication between doctors and their patients. It is especially important to encourage patients to be pro-active and be involved in their care. For example, I give my patients copies of all their test results when they come to visit and encourage them to read them and ask questions if they do not understand specific terms (and they frequently do). I tell all my patients not to assume anything; “If you call to find about test results and no one return your call, do not assume that they are ok. Please call again and make sure that you speak to someone.”

As a cancer specialist in a referring center, many of my patients ask whether they had their cancer for a long time, and whether an early diagnosis was missed. I perfectly understand the concerns. However, it is my experience that patients who are involved in their own health care and are well informed, usually have less chance of having missed diagnosis than those who blindly trust the system and passively participate. Blaming never resolves any problems. It is more tragic if one (patients or doctors) did not learn from their mistakes.
— Anas Younes, M.D.

And this one from a doctor in training:

I appreciate the 2nd half of the article, particularly highlighting the social characteristics of the patients most likely to not follow up with something they should have. However, in contrast to the comments above, I believe that it is always the physician’s responsibility to make sure that he/she and the patient are on the same page. I say this as a physician-in-training, and as a patient as well.

Patients are sick, scared, and, for the most part, worked pretty hard to get through the clinic door. it is the physician’s responsibility to understand the patient’s perspective, and act accordingly. We need to understand their disease as they understand it, even if we don’t agree with it.

All too often, we ignore or fail to appreciate the power differential latent within the patient-physician relationship. If a physician authoritatively tells a patient to schedule a mammogram or colonoscopy, it takes a strong patient to go against that edict. However, when the patient doesn’t follow up in the way we want him/her, it is our fault for failing to understand their position. Within each encounter, we need to strive for a truly shared decision-making model. If we solicit the patient’s thoughts, feelings and concerns about the plan we have for them, they will be on board with the plan, because it’s their plan too.

Granted, this is a tall order, However, it is our responsiblity as physicians to ensure that the patients we see are on board with us. Now certainly there are some patients and some reasons why a person may not follow-up when they say they will, but, from my experiences, a patient chooses not to follow-up when he/she hasn’t been part of the decision-making process.
— Alex

Patients who want to communicate effectively with their physicians and be joint participants in the care plan should take a look at my system for going to the doctor's office, in Chapter 3 of my book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst." The system is "Make a List, Leave a List, Take a List," and it involves putting in writing all our worrisome symptoms before the visit, leaving that list with the doctor, and making sure to take home a list of the action plan. This helps focus both you and the doctor on what is important and helps cut way back on the potential for miscommunication which is the source of so much misdiagnosis and missed opportunities for cure.

When someone over age 55 develops memory problems, it is often diagnosed as Alzheimer's, or another type of dementia, or perhaps Parkinson's disease, all of which are progressive and non-reversible. But families should be aware of one condition that can masquerade as any of these but if accurately diagnosed, can be treated successfully. The condition is called normal pressure hydrocephalus, or NPH, and as Jane Brody reported in the New York Times, because it is so frequently missed, no one is sure how many people have it, but estimates are up to 375,000 people in the United States.

Hydrocephalus involves a buildup of pressure inside the brain from lack of drainage of the cerebrospinal fluid that bathes and cushions the brain and spinal cord. Every person makes about two soda cans' worth of the fluid every day, and if it is not reabsorbed into the blood stream, pressure can build and cause damage to nerves and structures inside the brain.

Typically NPH presents first with a walking disorder -- the victims walk slowly with feet wide apart. It then progresses to urinary incontinence and loss of memory. These three issues are considered a "classic triad" for NPH.

If NPH is suspected, imaging of the brain will reveal one or more enlarged ventricles, the holes inside the brain that are filled with cerebrospinal fluid. The treatment is to put a tube into the ventricle to drain off the accumulated fluid and divert it into the abdomen. This surgically implanted shunt is reported to benefit 70 to 80 percent of patients with NPH. The manufacturer of a programmable shunt has a web site with more information: www.lifenph.com.