Talking rationally when health care goes wrong

What’s the best way to talk about it when something goes wrong with patient care?

The Minnesota Department of Health this week released its annual report on “never” events that occurred at Minnesota hospitals and surgery centers over the past year, and as usual I had an internal debate over whether to use the term “adverse event” or “medical error” or, simply, “mistake.”

You might ask, “What’s the difference?”

But if I’ve learned anything from a decade’s worth of reading and studying the yearly adverse health events report, it’s that none of this is as straightforward as it seems.

The incidents catalogued in Minnesota’s adverse health events report represent the most serious things that go wrong in hospitals – wrong-site procedures, advanced-stage pressure ulcers, patients who die by suicide while in the hospital, serious medication errors and so forth. By definition these are considered “never” events – events that should never, or only rarely, happen in the hospital.

The world of patient safety is a huge ecosystem, however, with many layers that are less easy to categorize. Does an error lie behind every bad event or is it more complicated than this? Those who work in patient safety would say to beware of oversimplification.

Not all adverse patient events are directly the result of a mistake. Not all mistakes lead to adverse events.

For that matter, not all adverse events end in harm, although plenty do and patients can be seriously disabled or even die as a result.

Sometimes it’s the individuals delivering the care who are at fault. More often, it’s the system itself that’s faulty and vulnerable and sets people up, patients and health care professionals alike, for something to go wrong.

And sometimes, in spite of everyone’s best efforts, in spite of doing all the steps correctly, things just don’t go well.

Teasing out these nuances is one of the challenges in patient safety, especially when it comes to how the public perceives and talks about patient safety. It’s still difficult for hospitals to speak openly about adverse events, partly because it’s painful to do so but also partly because of the barrage of blame and judgment that’s likely to be unleashed.

This isn’t to say providers are entitled to a free pass whenever a patient is harmed. Accountability is necessary, always. But there’s a difference between holding people accountable and being harshly punitive. When the energy is focused on blame, the attention can be deflected away from learning what went wrong, why it happened and how it can be prevented from happening again.

Because, in the end, isn’t that what everyone wants? To learn, so the vulnerabilities can be fixed and future patients are less likely to have something go wrong with their care.

One of the big lessons from 10 years of experience in Minnesota is that reporting and open discussion about adverse events is making health care measurably safer. At times the progress has been achingly slow and at times it has gone backwards, but the overall trajectory has been in the direction of improvement.

This doesn’t happen, though, unless there’s a rational conversation about it. At some point we all need to make it less scary for people to ‘fess up so the real work of learning and improving and making care safer can take place.

Read the Minnesota Department of Health 2014 report on adverse events here. A 10-year evaluation of the adverse health events reporting system can be found here.

Learning from the TV doctors

You couldn’t help feeling a twinge of sympathy for Dr. Tyler Wilson in the opening episode of “Monday Mornings”, TNT’s new medical drama.

Wilson, a neurosurgeon, has made an error in judgment that resulted in a child’s death during brain surgery. Now he’s being pilloried at fictional Chelsea General Hospital’s weekly morbidity and mortality (“M & M”) conference, presided over by Dr. Harding Hooten who has a reputation for mercilessly dissecting every misstep by the surgery staff (he accuses a transplant surgeon of being “a vulture” for trolling the emergency room in search of potential organ donors).

Alas, there’s much this show doesn’t get right. The doctors are caricatures. The medical cases are melodramatic and outlandish.

Even the M & M sessions are over the top, observes a critic who should know – Dr. Barron H. Lerner, a professor of medicine at New York University Langone Medical Center. Dr. Hooten’s tactics were common once upon a time but nowadays the atmosphere at M & M meetings is more measured, Dr. Lerner wrote in the New York Times.

Doctors should admit their mistakes but the goal is to learn from error and improve the practice of medicine, Dr. Lerner writes. “Even the best doctors make mistakes. Impugning them publicly – or even privately – can make them clam up.”

What gives “Monday Mornings” its unique hook for drawing in viewers is the exploration of the darker side of medicine and how doctors cope with their mistakes and personal failings.

As recently as 10 years ago, this was mostly a matter for discussion behind closed doors. But times have changed, and an open approach toward acknowledging and understanding medical mistakes is supported by current research.

When this happens, organizations have an opportunity to learn and do better, Canadian researchers concluded last year. “Systems that provide healthcare workers with the opportunity to report hazards, hazardous situations, errors, close calls and adverse events make it possible for an organization that receives such reports to use these opportunities to learn and/or hold people accountable for their actions,” they wrote.

Health care also has been moving towards what’s known as a “just culture”, which seeks to find a balance between the all-too-human tendency to make mistakes, especially in the complex, high-intensity environment of health care, and the need to be accountable for safe practice.

It all makes you wonder, though: Where do patients and families fit into this? All too often they’re at the mercy of a system that’s prone to error and populated by personalities that don’t always like to admit how fallible they can be. And invariably it’s patients and families who pay the highest price when something goes wrong.

You don’t have to look far to find negative feelings and even considerable anger towards health care professionals when things go badly. Members of the ProPublica patient harm community recently took sharp issue with the term “second victim” that’s often used to describe the doctors and nurses involved in a serious error.

“It’s just wholly inaccurate because family members are the 2nd victims,” one commenter wrote. “Providers are at best 3rd victims.”

And although the majority of studies on disclosure have found that what patients and families want most after a medical error are 1) an honest, compassionate explanation; and 2) assurance that the health care organization has learned from the event, the evidence is scarce that this actually occurs with any consistency.

Where “Monday Mornings” does seem to get it right, more often than not, is in its portrayal of how the doctors respond to bad outcomes and to the families involved. Dr. Wilson is crushed by the death of his young patient, can’t stop ruminating about it and wants to tell the patient’s mother the truth – that her son died because the surgeon failed to obtain an adequate medical history that would have revealed a high-risk genetic condition in the child’s family background. Dr. Tina Ridgeway is shocked and defensive at being sued for allowing a resident to perform surgery that accidentally damages the olfactory nerve, ending the patient’s career as a chef. And this week we saw Dr. Sung Park rethink his truly awful communication style after being chastised at the M & M for mishandling the decision-making for a brain-dead patient.

In other words, they’re not all heartless and uncaring.

Nor is the show too far off the mark in depicting how families react when things go wrong – shock, grief, anger, insistence on knowing what happened and, in Dr. Wilson’s case, a mother’s unexpected effort to reach out and console him.

If art imitates life, the intersection among doctors, patients, families and bad outcomes is still pretty complicated but some of the barriers might be starting to come down.

Clinician, wash thy hands: When the patient becomes the enforcer

As an intensive care physician at a hospital in Saskatoon, Dr. Susan Shaw is both comfortable and confident in the health care setting. But when she recently had to bring her daughter to the emergency room with a broken arm, “I couldn’t do it,” she blogged recently. “I couldn’t ask the nurses and doctor who looked after my daughter to wash their hands.”

If she was uncomfortable speaking up, what about the average patient and family?

Dr. Shaw’s experience illustrates an important and often overlooked issue in patient safety: the gap between what patients and families are told to do – “Remind providers to wash their hands” – and their willingness and/or ability to actually do so.

Hand washing is one of the key ways clinicians can avoid spreading germs to their patients and reduce the risk of infections acquired in the hospital setting. Yet health care workers often are inconsistent at washing their hands. In various studies that have attempted to measure hand washing compliance, the rate at some hospitals has been estimated at an abysmal 25 to 30 percent. Some studies have measured especially low rates among doctors and medical students.

No wonder, then, that patients and families have been enlisted in the campaign to help clinicians do better. But is the public any more successful in the role of enforcer than hospitals, medical clinics and nursing homes have been? It seems the answer is no.

A study that appears this month in the Infection Control and Hospital Epidemiology journal queried 200 patients about their awareness of the importance of hand washing and whether they would feel comfortable reminding nurses and doctors to wash their hands. The patients, all of whom were considered at higher risk for infections such as methicillin-resistant staph, were highly aware of the need for hand washing – but only 14 percent said they had ever spoken up and asked a health care worker to wash their hands. Moreover, only about half said they wouldn’t feel awkward asking a doctor to wash his or her hands.

Why such a gap between theory and practice? Based on her own experience, Dr. Shaw suggests some reasons:

I was worried about making the doctor and nurses feel uncomfortable. I knew my daughter’s care wouldn’t be compromised if I upset the doctor and nurses. I just didn’t want any awkward feelings.

Readers weighed in with similar stories of being too uncomfortable to ask – or of asking and being met with a grudging response. One person wrote, “When I did ask a nurse if she had washed her hands, I was greeted with a look that said to me I had been labeled a ‘difficult family member.’”

Indeed, more than a few health care professionals believe it’s not the patient’s or family’s place to remind them to wash their hands, as a study published a few months ago in the Archives of Internal Medicine concluded. Nearly one-third of the doctors and nurses who were surveyed said it was inappropriate for patients and families to have a role in this, and almost two out of five said they wouldn’t wear a button or sticker urging patients to ask them if they washed their hands. The reasons they gave: 43 percent said a reminder from a patient or family member would make them feel guilty, 27 percent said it would be humiliating and about 25 percent said having to stop and wash their hands in response to prompting by the patient would take too much time.

It all begs the question: Is it effective or even realistic to expect patients to help enforce hand washing compliance?

Patient and family participation is difficult to accomplish when the culture of a health care organization doesn’t openly encourage and support it, Dr. Shaw wrote. “I think it comes down to creating a new norm where healthcare workers clearly give permission to patients to expect and demand hand hygiene be part of care each and every time. This means focusing on the culture, behaviours  and attitudes of us as healthcare providers.”

There’s an even larger issue here, though, and it’s this: Should hand hygiene be a shared responsibility between patients and clinicians, or does it rest first and foremost with the health care professionals?

Dr. Shaw reflects: “What I learned from my experience is that is the responsibility of the care provider and the healthcare system to do the right thing every time for every patient without expecting patients to be the inspectors of our work.”

Perhaps we shouldn’t be asking how to make it easier for patients and families to speak up and remind clinicians to wash their hands. Perhaps we should be asking instead how to get clinicians to wash their hands every time without needing to be reminded by patients.

The missing voice in patient safety

Patients and families are often surprisingly observant of the care they receive. They notice when test results fall through the cracks or something isn’t followed up. They can tell when doctors, nurses and the rest of the team don’t seem to be communicating very well. And they certainly notice when their own input is ignored or dismissed.

A proposal by the Obama administration would harness what patients know by creating a system for them to report errors and close calls in their care. The information would add to what’s already being reported by hospitals and clinicians and broaden the ability to improve the safety of care.

I can think of only one criticism: Why did it take until 2012 for something like this to be proposed?

Although health care has become much more intentional and focused about patient safety, consumers – who bear the brunt of unsafe care – have had few formal mechanisms for identifying potentially unsafe situations or reporting outright mistakes. As a result, an important source of information has remained mostly untapped.

The New York Times explains what patients and families can bring to the table:

Federal officials say that medical mistakes often go unreported, and that patients have potentially useful information that could expose reasons for drug mix-ups, surgery on the wrong body part, radiation overdoses and myriad other problems that cause injuries, infections and tens of thousands of deaths each year.

As you might expect, reaction from health care providers has been mixed. Many are very receptive to the idea and believe it will give them a better perspective on errors and close calls that would otherwise go unreported. Indeed, multiple studies suggest hospital mistakes are significantly underreported; sometimes adverse events are entirely missing from the patient’s medical record. An understanding of the numbers and types of patient safety issues associated with care delivered in the doctor’s office – and how to address them – also is still in its infancy.

Supporters of the proposal believe a reporting system designed for patients will help capture more of this information and fill in some of the gaps.

Others think it’s a bad idea. One of the arguments: Patients won’t be able to discern whether a perceived error is actually standard procedure, hence could flood the system with baseless complaints.

The Association of American Physicians and Surgeons, a group that has gone on record against the Affordable Care Act, issued a statement last week calling the proposal misguided, politically driven and likely to foster an adversarial relationship between doctors and patients.

The whole question of whether to report or not to report medical errors to a national system remains a thorny one. Consumers do in fact have other options if they perceive their care is unsafe or an error occurred. They can complain to the doctor, report it to the hospital, report it to the state or file a formal complaint with a medical practice board or board of nursing.

Talking to the provider may not satisfactorily resolve a complaint, though, especially if there are differing perceptions about what happened, documentation is lacking or the provider simply isn’t very good at dealing with problems related to safety or quality of care. Formal complaints to a licensing authority are a serious step to take and may not always be warranted.

The real issue is that patients much of the time aren’t given a meaningful voice in identifying the safety problems they encounter in their care. Moreover, the system often falls short when it comes to encouraging patients to speak up about their experiences.

In a project launched this past summer, ProPublica began collecting survey information and stories from people who were harmed by their care. Some of the themes that have emerged: Even when they have valid grounds for doing so, most people do not file formal complaints because they’re often traumatized, disabled, don’t understand how the bureaucracy works or don’t even realize an error occurred. Sometimes they feel intimidated by providers; other times they feel social pressure not to complain. Often they find the complaint process unsatisfactory because nothing came of their efforts.

How much information might have been lost because these people didn’t speak up, and how likely is the same harm to occur with other patients because no one knew about it or had an understanding of the total picture?

A national reporting system designed for patients and families won’t cure everything that’s unsafe about American health care, but it seems like a good way to start listening to patients and learning from what they’ve experienced.

The million-dollar question: Are you a team?

The new patient had a question and, according to Dr. James Salwitz, it was “a zinger”: “What is the culture of collaboration in your group?”

Very few patients ever think to ask this or perhaps even realize it’s important, Dr. Salwitz reflected recently on his blog, Sunrise Rounds. But maybe they should, because when medical groups function effectively as a team, they’re also better able to provide good care. Or, as Dr. Salwitz puts it, “As with lessons learned in kindergarten, if your doctor does not play well with others, your medical care may be in trouble.”

Why would collaboration matter, when the patient’s primary relationship is with his or her own physician? Dr. Salwitz lists some reasons:

- Doctors can’t be available 24/7 and there may come a time when the patient must be seen by someone else. Colleagues need to know the plan of care for the patient, and this takes skilled and consistent communication.

- Doctors need to be able to review cases with their colleagues and give and receive constructive criticism without becoming defensive or isolated.

- Working closely with colleagues is how doctors are able to evaluate each other’s skills and abilities. Doctors depend on this knowledge when referring patients to other physicians.

I’d take this one step further by including the rest of the doctor’s staff. Patients don’t generally get to choose the nurse, the person who answers the phone or the person at the front desk, but these individuals are part of the team too – and what they do, or don’t do, can either enhance the care of the patient or sow confusion, frustration and the potential for error.

The impact of teamwork on patient outcomes is difficult to measure. But as it turns out, there’s a whole chunk of research reinforcing that patient care tends to be better and safer in organizations that emphasize a culture of collaboration.

One classic study, published in 2009 in the American Journal of Surgery, found that poor teamwork was associated with more complications and more deaths among surgery patients. Among the behaviors that seemed to make a difference were the amount of information shared during the surgery and how well the team was briefed during handoffs.

Other studies have documented the problems created when health care professionals engage in disruptive behavior.

And a study of a group of emergency rooms found that when physicians, nurses and technicians received formal training in emergency team coordination, they performed better as a team and made fewer errors.

How can consumers assess the quality of teamwork at their clinic or hospital? There’s no set of standardized online ratings, at least yet, hence not much guidance for the public. But Dr. Salwitz offers a few thoughtful questions with which to start the conversation:

“Do you discuss cases with your partners?” “How do you cover each other on the weekends?” “How long have you been together?” “What do you, as a doctor, look for in other doctors?” “What is your culture of collaboration?” And finally, “Is there a unifying philosophy that the doctors in your practice share? What is it?”

More patients ought to be asking these questions. And maybe more clinicians ought to be thinking about what their response would be.

Getting a handle on patient harm

The worst harms that befall patients – removing the wrong limb, receiving a lethal overdose of medication, being accidentally set on fire during a surgical procedure – are always horrifying to hear about, yet there’s growing evidence that these are only a tiny subset of all the things that go wrong in patient care.

A raft of studies suggests that in spite of an unprecedented national focus on patient safety, errors and harm to patients remain vastly underreported.

One of the largest of these studies was issued this past month by the Office of the Inspector General of the U.S. Department of Health and Human Services. (A summary can be found here; the full report is here.)

A few take-home points from the report: Nearly one in three Medicare patients experienced an adverse event in the hospital, yet the internal systems created by hospitals for reporting adverse events captured only a fraction of them. Statewide reporting systems didn’t necessarily help either. Overall, 60 percent of adverse events occurred at hospitals in states with mandatory reporting systems – but only 1 percent of events actually were reported, and most of the harms that went unreported to the state system also were undetected by the hospital’s own reporting system.

Several of the events were serious. In one case, a patient died when poor insulin management led to hypoglycemic coma. In another, a patient died of acute kidney failure after the hospital failed to recognize and treat a serious systematic inflammation.

The report notes that even though many of the adverse events required life-saving intervention and undoubtedly would have been noticed by hospital staff, they went unreported.

This was just one analysis of many that have been done in recent years on the ability of the reporting process to accurately identify patient harm. For instance, a 2005 study of a month’s worth of patient visits to an urban, academic emergency room found that only about half of errors were voluntarily reported – and most of the reports came from nurses, not physicians. Other studies have found that voluntary reporting, complaints from patients and even malpractice allegations tend to uncover only a fraction of the things that go wrong.

Although it would be easy to conclude that health care providers are deliberately covering up their mistakes, the real picture is more complicated than this.

One key point made by the OIG report is this: When adverse events weren’t reported, often it was because the hospital staff didn’t recognize that an adverse event had taken place. Indeed, in many cases they seem to have assumed that what happened to the patient was a complication rather than an adverse event.

Cumbersome reporting systems can be a disincentive for reporting all but the most obvious or significant incidents. Many studies also have documented that health care workers frequently remain silent about mistakes because they fear being punished.

For more than a decade, there has been considerable debate in the U.S. over reporting patient safety incidents. Many institutions and health care professionals are adamantly opposed to mandatory reporting, and this is reflected in the fact that only half of states require reporting of patient safety incidents (Minnesota was the first to adopt such a system). Nor is there a national mandatory patient safety reporting system.

By all accounts, adverse event reporting here in Minnesota is fairly robust and seems to capture most of the incidents that meet the criteria for reporting.

But even when states have their own reporting systems, there’s a weakness: They still rely mostly on the honor system in collecting reports, so it’s possible for some incidents to slip under the radar. They tend to be very specific about what must be reported – wrong-site surgery, for example, or serious pressure ulcers that develop or progress during a hospital stay. They also focus on more severe cases of patient harm, hence may miss numerous harms that are smaller and more common yet have the potential to add significantly to the burden on patients, the health care system and health care costs. Moreover, reporting systems focus mainly on the hospital setting, when most encounters for the majority of patients are in medical clinics.

Why report at all? Because it’s only by collecting and analyzing the data that health care organizations can truly see where the vulnerabilities lie. Often the problem areas aren’t what you’d think. When Rice Memorial Hospital here in Willmar did a study on which older patients were more likely to be readmitted to the hospital, they expected it would be those who were still living independently at home and perhaps didn’t have someone checking on them 24 hours a day. But when they actually looked at the data, most of the readmissions were among patients living in nursing homes.

There’s also this to be said for voluntary reporting: It keeps everyone accountable.

Exactly how to define “patient harm” seems to still be evolving. One person’s adverse event might be, to someone else, a known (and therefore unsurprising) complication. Nor is there universal agreement about the extent to which adverse events can be prevented, or mitigated once they happen.

There’s a certain tension here. Should some level of patient harm simply be accepted as an unavoidable consequence of receiving medical care? Or should health care do more to recognize that just because bad things can happen, they don’t have to be inevitable? Those who work deep in the trenches of patient safety would say that even when complications are known and somewhat expected, health care should do its best to keep them from happening – and should be honest about reporting them when they do take place.

Until these tensions can be better resolved, health care likely will continue to struggle with recognizing and reporting adverse events and getting a better handle on the how and why of patient harm.

Of zebras, unicorns and rare events in medicine

By any measure, it’s a horrifying story. Rory Staunton, a 12-year-old from New York, died April 1 after a seemingly minor cut on his arm became infected with Group A streptococcus, leading to septic shock that fatally overwhelmed him.

A New York Times article this week recounts the frightening and ultimately tragic chain of events: how Rory’s parents brought him to the pediatrician, then to the emergency room. Feverish and vomiting, he was thought to be suffering from a stomach virus and dehydration. He was sent home, then brought back to the ER by his parents as his condition steadily worsened.

Abnormal lab results from his first visit to the ER apparently weren’t recognized or acted upon, the Times reported. Nor were they shared with his parents, who were increasingly anxious and worried that no one was hearing their concerns.

This story is about many things: the death of a child. A bereaved family. A health system that seemingly dropped the ball. Lapses in communication. A failure to connect the dots or notice alarming red flags.

I could write about any of these but I’m going to focus instead on something else: the rarities of medicine, those one-in-a-million complications or tragic outcomes for which most of us are never really quite prepared.

There’s a saying in medicine: “When you hear hoofbeats, look for a horse, not a zebra.” In other words, what ails the patient is most likely something common rather than something unusual.

Most of the time this serves the diagnostic process well… except when it doesn’t. Zebras might be uncommon but, unlike unicorns, they aren’t nonexistent and therefore safe to dismiss. Inevitably there’s the rare patient with an unusual problem or atypical symptoms. These situations challenge clinicians to think outside the box – to consider the common things first but to be aware of the less-common possibilities.

Of all the processes in medicine, diagnosis is among the most complex. It requires the ability to think critically, to consider all the possibilities, to collect and study the evidence, interpret the findings and draw accurate conclusions.

Not surprisingly, there can be missteps along the way. There’s a growing body of research into diagnostic error and why it happens. Two-thirds of these mistakes lie within system vulnerabilities – delays in scheduling procedures, failure to follow up on test results, poor coordination of care, inadequate communication that prevents critical information from being shared, and so on.

But about one-third of diagnostic delays and errors are thought to rest with the clinician’s thought processes – for instance, “anchoring bias,” or locking onto key features of the patient’s symptoms too early in the diagnostic process and failing to adjust when later information suggests something different. To put it another way: convincing yourself that the hoofbeats you’re hearing belong to a horse, despite subsequent evidence to the contrary.

How should health care deal with the fact that sometimes there are zebras in the herd? The New York Times article about the Staunton family has drawn more than 1,000 responses, many of them from physicians whose reactions range from empathy to defensiveness.

“As an ER physician, I can tell you that we see hundreds if not thousands of patients JUST like this every month,” one doctor wrote.

Another doctor commented, “If you look at the medicine involved, I would bet out of thousands of 12-year-olds with this same presentation he would be the only one with this type of outcome. While it is very human to look for blame, sepsis in teens or preteens from a cut without other factors is very very rare. And flu symptoms are very common.”

The tenor of some of the discussion suggests, appallingly, that septic shock was such an unlikely possibility it was reasonable not to consider it.

Therein lies one of the issues. If you test for every possibility to rule out even the slightest chance of something rare, the system would rapidly be overwhelmed. But if you fail to recognize that rare situations aren’t impossible, you risk missing a diagnosis that could save the patient.

It’s zero comfort for patients and families to be told they lost the one-in-a-million odds of not being a zebra. The standard advice – speak up, ask questions, advocate for yourself – crumbles in the face of unusual diseases or complications that most people couldn’t possibly be expected to know about or anticipate.

There’s a challenge here for health care. Much of the work in patient safety focuses on errors that are common or that represent a trend. It makes sense, since addressing these can have the greatest impact on the largest number of patients. But where does that leave the rare incidents that, by definition, are rare? Should they be viewed as a fluke that couldn’t have been prevented? Or assigned a lower priority on the grounds that they’re simply not very likely to happen? What about the human cost of failing to recognize that sometimes the horse really is a zebra?

It’s not clear what the answer should be. In the meantime, a family is grieving and in emotional shock, and every clinician involved in this case is agonizing over what they could have done differently. The scars are going to last forever.

Update, July 19: The hospital involved in Rory Staunton’s case has announced several major changes in the discharge process for emergency-room patients. A key quote from Dr. Joshua Needleman, a specialist in pediatric pulmonary medicine at Weill Cornell Medical Center, New York: “The big questions are about how to integrate new information that doesn’t fit with the perception you have formed. How to listen to the patient when they are telling you something that doesn’t fit with your internal narrative of the case. Those are the hardest things to do in medicine and yet the most important.”

Clinicians and their spidey sense

The patient was 35, pregnant, diabetic and a methamphetamine user. Almost from the moment she was admitted to the hospital, Dr. Theresa Chan had an uneasy feeling this was a patient headed for serious trouble.

Scrambling to do rounds on her other patients and taking a quick glance at the woman’s X-ray, Dr. Chan’s unease grew. Although the ER physician who admitted the woman to the hospital gave a preliminary diagnosis of pneumonia, Dr. Chan had some doubts and decided to see for herself.

Her blog describes what happened next:

As I walked into her room, I felt a hair on the back of my neck rising up. Not literally, of course. The hair – and it is only one – has become the symbol for the feeling I get when a patient is really sick. It sprouted during the second year of my residency and has been with me ever since.

To make a long story short, the patient turned out to have inflammatory fluid that had collected in one of her lungs and developed an infection. She could hardly breathe. Within the hour she had a chest tube inserted by a surgeon. She ended up being transferred to a tertiary care center and ultimately lost the pregnancy.

“The moral of this case: Whatever anyone tells you, check the facts for yourself,” Dr. Chan concludes.

Do clinicians have a spidey sense, like the comic-book superhero Spider-Man, that tells them when something is really wrong with a patient?

The pitfalls of relying on perception are outlined in an interesting analysis published online last month in the Journal of General Internal Medicine. It examines a specific area of clinical practice: judging whether a patient is truly getting better in response to treatment.

How do you know the patient is improving? Is this an assessment based purely on test results? Is it based on how well the patient looks? Is it a combination of objective measurements and gut instinct? And how do you avoid misjudgments due to overconfidence, memory lapses, unspoken assumptions and other thought processes that can cloud one’s thinking?

There’s a intriguing role played by clinical intuition – the gut sense, often based on a vague combination of sight, sound, touch and past experience, which helps clinicians recognize when a seemingly minor problem might actually be much more, when the diagnostic facts don’t add up – perhaps even when the patient is a faker or a drug-seeker.

Is it the real deal? Clinical intuition is a somewhat controversial concept in medicine. It’s not clearly defined and it’s not something that’s part of any formal training curriculum. It seems to be more well developed in some people than others, although few clinicians are willing to follow their intuition alone, without objective facts to back it up. And as the journal article demonstrates, gut instinct can be prone to all sorts of cognitive errors.

Yet the spidey sense seems to be genuine, even if it’s hard to pin down. ‘I know it absolutely exists and I am happy to have a decent dose of it,” writes the anonymous ER nurse who blogs at Not Nurse Ratched.

So what is spidey sense? “Your patient just looks wrong. Or DOESN’T look wrong, but you have a gut feeling that something is about to go seriously wrong,” she writes. “Generally, and this is really the point of my post, you’ve got nothing to hang your hat on as far as an assessment finding or anything from the patient’s history, and that makes spidey sense problematic.”

Sometimes the spidey sense generates a false alarm but better to be safe than sorry, she concludes. “If the patient doesn’t look quite right and that’s all I’ve got, I use it. I feel a little silly, but I do.”

Various studies have taken a closer look at the role of intuition in medicine. Empathy, for instance, may be partly intuitive, although there’s still a fair amount of debate over the extent to which it’s innate vs. a skill that can be taught. A small study conducted in 2007 found that nurses often use intuition in their decision-making, and that their use of intuition tends to increase with experience. (The study didn’t analyze how often the nurses’ intuition turned out to be correct, however.)

“Do we need evidence for everything?” wonders Dr. David Hunter in a 2010 American Orthoptic Journal article that questions the assumption that objective, measurable evidence should underlie all medical decisions. “The frequent lack of solid clinical evidence requires clinicians to invoke critical thinking, communication, judgment, and even intuition on behalf of their patients. Medical training is as much an apprenticeship as it is an education, and medicine as much as craft as it is an art.”

Evidence does matter; clinicians can’t make good decisions if they lack facts or knowledge. But it seems there’s a place for intuition as well, even though there’ll likely be debate for years to come on how reliable the spidey sense truly is.

‘Questions are the answer’

The consensus is virtually unanimous: If they want better care, patients need to speak up. But for many, this is easier said than done.

If three decades’ worth of research on patient engagement is any indication, most people tend to suddenly become silent in the doctor’s office. Some studies put the average number of questions asked during the appointment at only two.

How to change this?

Encouraging people to ask more questions and giving them some tools to get started with question-asking behavior is the focus of a newly launched campaign by the U.S. Agency for Healthcare Research and Quality, It’s called “Questions Are the Answer,” and it’s based on a solid body of evidence that when it comes to safe, effective health care, communication matters – not only communication by the doctor but by the patient as well.

The AHRQ campaign is the latest in a widening national effort to better equip patients to become active partners in their care.

What can happen when patients are too passive about asking questions? They could have the experience of Alastair McGregor, whose story appears on the AHRQ website in a collection of videos featuring patients and clinicians. McGregor’s heart rate was excellent but he had high blood pressure, so his doctor prescribed medication to lower it. Unfortunately the medication led to an increasingly irregular heart rhythm – which McGregor didn’t report to the doctor until he wound up in an emergency room.

Lesson learned: If there’s a problem, bring it up, McGregor tells viewers. “This is not a question of just taking my car in to have the oil changed, and sitting there while it’s being done,” he says. “This is me. I happen to be the car.”

The AHRQ campaign makes another key point: These days, good clinicians want their patients to ask questions. The health care team can’t address the patient’s concerns or provide appropriate care if the patient doesn’t speak up, the website points out.

Because it’s all too common for patients to be unsure of what to ask, the AHRQ website offers a list of 10 “starter” questions: What is this test for? When will I get the results? How do you spell the name of that drug? What are the potential side effects?

There’s a cool Question Builder tool that helps patients prepare for a doctor’s appointment by identifying and prioritizing the questions they want to ask. There also are tips for questions to ask during the appointment itself and for following up afterwards.

It would perhaps be unrealistic to think the “Questions Are the Answer” campaign will be, well, the total answer to getting more patients involved in their care. There are plenty of other reasons why patients are reluctant to speak up – feeling rushed through their appointment, not wanting to “bother” the doctor, fearful of looking stupid or having their question ignored or trivialized. Sometimes patients don’t ask because they’re afraid the answer will be something they aren’t yet ready to hear. Sometimes it comes down to health care culture and the openness (or not) of individual clinicians to listening to what their patients have to say. Language and literacy barriers are additional obstacles that aren’t easily overcome.

Instilling confidence in people that their questions are expected – welcomed, even – seems like a major first step, however.

If more proof is needed of the importance of asking questions, consider this: Studies clearly demonstrate that when there’s good communication between doctor and patient, health outcomes are generally better. Exactly how this works isn’t entirely understood, but researchers have measured greater trust, more agreement on the plan for the patient’s care, higher-quality medical decisions, increased adherence and greater shared understanding than when communication is lacking. Moreover, asking questions is considered one of the hallmarks of positive information-seeking behavior by patients.

The only truly dumb question? It’s the one the patient wants answered but fails to ask.

‘The patient is on fire!’

December 2011: A 29-year-old woman is undergoing minor facial surgery at an outpatient center in Florida when a flash fire erupts. She sustains burns to the face and neck and is airlifted to a burn center.

October 2011: A 68-year-old California woman’s oxygen tube catches fire while a surgeon is cauterizing a wound in her neck. Five months later, she’s still recovering.

September 2009: A woman from Illinois, age 65, dies six days after being severely burned in a flash fire during a biopsy. The hospital subsequently revises its safety policies and puts mandatory training in place for all surgery staff.

Of all the things that can go wrong in patient care, surgical fires are among the most horrifying – so much so that the U.S. Food and Drug Administration recently launched a prevention initiative to educate health care organizations about the causes of surgical fires and provide them with risk reduction strategies. The initiative includes a number of prominent partners: the Anesthesia Patient Safety Foundation, the Institute for Safe Medication Practices, the Joint Commission, the Veterans Affairs National Center for Patient Safety, the American Academy of Orthopaedic Surgeons, the American Society of Anesthesiologists and the American Society of Nurse Anesthetists, among others.

Surgical fires are thought to be rare. Some estimates put the number of surgical fires  at 600 to 650 a year out of millions of surgical procedures performed in the U.S. Other studies have suggested they’re much less common, citing fewer than 100 a year. But because many states don’t require hospitals and surgery centers to report them, the true incidence is unknown, and surgical fires in the U.S. likely are significantly underreported.

What’s more, most patients and families are unaware of the risk. Ann Grice, the mother of the Florida woman whose face was burned last December, told the Crestview (Fla.) News Bulletin in an interview shortly afterwards, “I am in shock. This is not what happens with a routine outpatient surgery.”

After the death of her mother in 2004 following a surgical fire and subsequent severe complications, Cathy Reuter Lake founded SurgicalFire.org, a nonprofit organization dedicated to raising awareness and providing information about this underrecognized risk.

“While many people have never heard of a surgical fire inside a patient, it happens more frequently than you might think,” Lake writes on her website. “Exact statistics are hard to uncover due to under-reporting and efforts to cover up surgical fires for fear of malpractice suits.”

Regardless of how often they occur, fires that break out in operating rooms are frightening, both for staff and for the patient – the more so since the consequences can be so deadly. Surgical fires also can injure the staff in the OR, damage or destroy expensive equipment and put a surgery suite out of commission due to smoke or water damage or worse.

ORs present a uniquely hazardous environment for triggering flash fires. They contain numerous instruments capable of touching off a fire: surgical lasers, electrocautery units, heated probes, fiberoptic light sources, drills, defibrillators and so on. They contain fuels such as surgical drapes, sheets, mattresses, bandages, alcohol skin preps and breathing circuits. Finally, they’re typically rich in oxygen, which makes it easier for a fire to break out and causes the flames to spread faster and burn hotter.

Based on data collected and analyzed by the FDA, the Joint Commission and the ECRI private research group, the majority of surgical fires have several things in common. Electrosurgical equipment and lasers account for the most frequent ignition sources, and an oxygen-enriched atmosphere was a contributing factor in nearly three-fourths of the cases that were studied. Burns to the patient were most likely to involve the airway, head or face.

The most critical conclusion: With proper precautions, surgical fires are almost 100 percent preventable.

One of the outcomes of the FDA initiative has been the development of a series of recommendations to reduce the risk of surgical fire. Surgery teams are advised to be judicious in their use of supplemental oxygen and to avoid allowing oxygen to accumulate around the surgery site. After alcohol-based skin preparations are applied, the patient’s skin should be allowed to dry before being draped and starting the procedure. Surgery teams should exercise caution in how they wield electrocautery devices, lasers and other tools and how they place them when not in use. Finally, the OR should have a plan for what to do if a surgical fire does break out.

None of this might be very reassuring to patients – and indeed, it’s exceedingly difficult to patients to advocate for safety in the OR when they’re under anesthesia. Nevertheless, there are a handful of things patients can do ahead of time, starting with awareness of the risks and the knowledge that these types of fires are almost entirely preventable.

The Empowered Patient Coalition suggests asking questions: Is the OR team at the hospital or surgery center trained in preventing, recognizing and putting out surgical fires? What precautions do they use to protect patients? Are water and carbon dioxide fire extinguishers readily available in the OR? Vague or unsatisfactory answers may mean the patient is better off choosing somewhere else to go for surgery.