28.4.13

DOCTOR'S ORDERS

(Published in Style Magazine)

DOCTOR'S ORDERS

In his new book, Johns Hopkins surgeon Marty Makary breaks the code of silence, exposes hospital errors and medical mishaps in an effort to better inform patients. By Mat Edelson


As a young medical resident, Marty Makary worked with a surgeon whom hospital staff had tagged with a frightening acronym: HODAD…as in “Hands of Death and Destruction.” Unsuspecting patients, Makary discovered, actually appreciated the doctor for his compassion, especially since his often deadly mistakes were shielded by administrators out to protect one of their own. The situation with HODAD, and the medical system’s general withholding of information vital to patients, upset Makary so much that in his third year he quit medical school to go into public health.

A year later, missing patient care, Makary returned to medicine. And now as a Johns Hopkins surgeon, he’s on a mission: to help reduce the estimated 100,000 preventable deaths that occur each year in the United States because of hospital-based medical errors. To put those numbers into perspective, medical errors are the fifth leading cause of death in America--and the third-leading cause when you include another hospital issue, preventable infections.   

In his new New York Times bestseller, “Unaccountable: What Hospitals Won’t Tell You and How Transparency Can Revolutionize Health Care” (Bloomsbury Press), Makary exposes the medical mindset that leads to complacency and errors, and offers both medicine and the public the tools they need to measure the safety of hospitals. In the book, the 45-year-old soft-spoken Makary, once nominated to be on President Obama’s short list for Surgeon General, offers an eye-opening, nuts-and-bolts primer on medical errors. The faults, he shows, lie in systems and culture as much as in people.

In an environment fraught with fear, repercussions, litigation and an often-oppressive hierarchy that controls promotions, Makary says the code of silence on errors is inculcated in medical students from Day One, and woe to those who break it. “Suddenly, whistle-blower doctors notice they are assigned to more emergency-calls, given fewer resources, or simply bad-mouthed and discredited in retaliation,” he writes. “I witnessed several doctors run out of town because their honesty and outspokenness began to poke the bear.”

In his book, Makary points out not just the errors of others, but his own, as well. As an intern, Makary was in charge of District of Columbia General’s intensive care unit one evening. The only physician on the unit, he was 24 hours into a shift and admittedly exhausted when he misread a vital sign and had a patient’s ventilator adjusted according to the mistaken reading. The patient came perilously close to respiratory arrest, developed hospital-acquired pneumonia and died a week later. In keeping with the code he'd been taught, he didn't tell his supervisors--or anyone--about his mistake. Makary still doesn't know for sure what role his error played in the patient’s outcome.

Sitting one fall afternoon in The Daily Grind coffee shop in a baseball cap, Makary says admitting his mistake in print is part of the transparency he feels the medical community needs to achieve to move forward, which includes admitting that physicians, contrary to the image many like to project, are imperfect. “I think it was important to be human [about my mistake], and to show others that if they commit a medical mistake they can realize it’s part of being human,” he says. “But you have to be open and address it and not be silent. If we don’t talk and measure it, we’re not accountable.”

After a year of silence surrounding his mistake, Makary had an epiphany in a bar with two other residents. They all discussed errors they’d made, and went on to partially blame a hospital system that, in trying to turn a profit, put patients in harm’s way every day. Too few doctors and nurses serving too many patients was an equation that could only lead to infection, inconsistent care and inevitably poor—if not deadly—outcomes. But the idea that “the system” was at fault was oppressive and infuriating to some. But it energized Makary.

A man of deep Christian faith, he believed he could change the system, and his timing was spot on: A 1999 Institute of Medicine report entitled “To Err is Human: Building a Safer Health System,” placed patient safety and quality control in medicine squarely in the public eye.

Soon after, Makary would team with colleague Dr. Peter Pronovost to research the causes and potential fixes of medical errors, Pronovost, director of Hopkins’ Armstrong Institute for Patient Safety and Quality, is credited with coming up with a simple-to-use ICU safety and infection prevention “checklist” that’s been adopted across America, saving tens of thousands of lives.

Like Pronovost, whose father died of a medical error, Makary admits to being driven by the medical misfortunes of those close to him: a grandfather who died from a preventable infection following unnecessary surgery, a family friend misdiagnosed with breast cancer who had an unneeded mastectomy, a brother bearing a large scar on his back where poorly-sewn stitches tore apart post-surgery.  Makary’s work measuring such errors might not eliminate all of them, but he argues in his book that the public has a right to know that they’ve occurred.

He notes that the science of measuring errors has come a long way, but methods of getting that information to the public have not.  Hospitals are now required to collect information on so-called sentinel events (defined as a major error, such as a drug overdose), infection rates, complication rates for certain surgeries and readmission rates for incomplete care. And, in fact, there are more than 200 registries that track patient outcomes. But only three make their data available to the public, according to Makary.

Then there are the 28 “never-events,” such as leaving a sponge inside a patient after surgery or setting a patient on fire, which, as the name suggests are never, ever supposed to happen. “Never-events were never tracked," says Makary. "To this day, they’re only for the first time being monitored, and only in some states. I’m arguing that if (never-events) are a high-consensus definition of something that represents quality in hospitals, why not measure it, make it available to the public, and make hospitals accountable for their performance?”

Makary’s ideas for accountability also involve video surveillance to record every operating room procedure, which according to the data he cites would improve both quality of care and patient satisfaction (One leading gastroenterologist found that the quality of procedures jumped by 30 percent after implementing recordings of colonoscopies.  He also noted that 81 percent of 250 patients wanted copies).

With a national movement toward electronic patient records, Makary says it would be beneficial for videos to be part of a person’s permanent medical file. Since the average American is expected to undergo more than nine procedures—including, often, repeat procedures--Makary says videos would give a far more accurate picture of what another doctor has done than a set of (often incomplete) notes. “As a surgeon, I know I’d love to be able to see videos of key past operations before I ‘go in,'’’ writes Makary.

While Makary’s pitch for transparency is persuasive, not everyone is buying it. UCLA OB/GYN clinical professor Dr. Peter Weiss, writing critically in his online blog about Makary’s book, claims that “posting infection rates (and) readmission rates will force hospitals and doctors to refuse care of the very ill. It will happen, mark my word.”

Makary counters that there’s no evidence that infection rate information, which is now public, has affected whom physicians choose to treat. And he says the move for transparency, for allowing the public to judge which hospitals and physicians they wish to engage, is gaining internal advocates. He points out that the Society of Thoracic Surgeons has partnered with Consumer Reports to evaluate hospital performance with a simple five-star rating system that will be available to the public. "They have 40 percent of the hospitals now," he says. "They're pushing for 100."

For Marty Makary, that's the kind of accountability that could lead hospitals back to the place from which they sprang; sanctuaries of care, dedicated to doing no harm.

26.4.13

SAFETY FIRST

(Published in Johns Hopkins Medicine Magazine)

SAFETY FIRST

Johns Hopkins researchers are finding new safeguards to prevent medical errors--and save lives. By Mat Edelson


There was a time, not so long ago, when the field of patient safety and quality didn't exist. The tacit assumption was that when it came to safety, any field with the mantra of “Do no harm” wasn’t actually likely to do much harm. Was it?

Turns out, patients were dying by the stadium full. That’s what the Institute of Medicine announced in its groundbreaking 1999 report “To Err is Human: Building A Safer Health System.” The report found that anywhere between 44,000 and 98,000 people died from medical errors each year in U.S. hospitals. The report thrust the issue of patient safety into the national spotlight. 

For Hopkins Medicine, the report was a call-to-arms, brought home all too vividly just two years later. The death of young Josie King from a cascade of medical errors and miscommunications at Hopkins in 2001 put patient safety on the front page; Ed Miller, former medical school dean, said “Josie’s death had a huge impact on the institution and in some ways it allowed for a change of culture to occur.”



Across the institution, numerous clinicians and nurses began their own investigations into improving patient safety; like molecules in solution they needed only the right structure to crystallize and strengthen their purpose. 

That would come through the Armstrong Institute for Patient Safety Quality, launched in 2011, and its catalyst Peter Pronovost, winner of a MacArthur “genius grant.” An anesthesiologist and critical care medicine physician, who had lost his own father to a medical error, Pronovost’s early work in safety included inventing an infection reduction checklist for catheter use in intensive care units. The checklist is today credited with saving thousands of lives annually.

Since then, Pronovost has worked to bring serious data and rigorous science to the field, building, with his col- leagues, a growing archive of scholarship that is well on its way to achieving critical mass. To date, the Armstrong Institute’s more than 100 core faculty from the schools of Medicine, Public Health, Nursing, Engineering, and Hopkins’ Applied Physics Lab have published more than 400 papers; the institute garnered $12 million in grants and contracts, for the fiscal year ending in July. Perhaps most importantly, the Armstrong Institute provided safety and quality training to more than 650 patient safety advocates (including a half- dozen Patient Safety Fellows).

Drawing from fields ranging from computer science to psychology, the patient safety and quality effort at the Armstrong Institute is making an impact across Hopkins Medicine—and on hospital systems around the country.

“Our work is informed by human factors; systems engi- neers, behavioral economists, sociologists, health informatics ... we learned when you package all those things together, you get a good conceptual model of how to change behavior and improve outcomes,” says Pronovost. 

Here are five examples of how that’s playing out.

***
Preventing Diagnostic Error 

Just as mariners once depended upon the art of reading the stars to set a true course, so, too, do physicians rely on a tool that is equal parts art and science to determine their course of action with a patient. It is called a diagnosis, and like those chart headings of yore, it’s often fallible. 

In fact, outside studies corroborated by Hopkins researchers estimate that perhaps 10 percent or more of all diagnoses made by physicians are erroneous, often resulting in a spectrum of problems that range from the delayed start of useful treatments to increased morbidity and mortality. A team of researchers including Hopkins’ intensivist Bradford Winters and David Newman-Toker estimated that diagnostic errors contribute to the deaths of more than 40,500 people annually—roughly equal to the yearly mortality toll from breast cancer. 

A classic example of a common diagnostic mistake: When a patient presents with breathing difficulties in the ED, is it pneumonia or Acute Respiratory Disease Syndrome? One calls for medications, the other a ventilator. The wrong call, either way, leads to poorer outcomes even if it’s course-corrected fairly quickly. Take the diagnosis a step further: If one diagnoses pneumonia, which kind? Bacterial, which calls for antibiotics, or the less common fungal, which requires different meds? Again, mistakes are disturbingly the norm, says Winters. “What surprised us was how often a certain kind of fungal pneumonia, aspergillosis, was discovered at autopsy that was not diagnosed [nor treated] while the patient was in the ICU; it was an eye-opener how common that was.” 

Newman-Toker, who studies how dizziness as an early warning sign for stroke is often missed, notes several cognitive factors involving physicians that can lead to diagnostic errors. There’s “availability bias,” which is the effect of one’s most recent clinical experience. “If you’ve seen something recently, you’re more likely to rank it as likely to occur again. If you get burned by a rare disease, you’re going to over order tests for the next three years to ensure you don’t get burned again,” he says. “It happens in overestimating uncommon things, and underestimating the likelihood of common, dangerous diagnoses. We constantly don’t do the math right.”
 

One way to overcome personal bias, especially in ICU settings where patient status is constantly changing, is what one Massachusetts-based study called “diagnostic huddles.”

“They had criteria that if a patient wasn’t progressing, a huddle could be called,” says Winters. “Bring in the wisdom of the crowd and figure out if they were in a cognitive trap and not valuing certain data to either raise things up or lower things down on the differential diagnosis scale.” Huddles have been credited with improved scheduling, reduced testing, and better preparation for addressing patient’s specific needs. 

Computers may eventually help decide which is valuable to huddlers. The sophisticated algorithms that now allow national security agencies to sift millions of data points for patterns pointing to usable intelligence could be brought to bear on patient charts, says Winters. Have enough records of, say, 65-year-old men presenting with breathing difficulties, and a slight spike—or perhaps drop—in temperature might be enough to send an alert of what the true diagnosis should be. 

There may be other tip-offs as well. Newman-Toker’s team is looking at properly assessing stroke in the ED, especially in patients who present initially with severe dizziness. It turns out that measuring these patient’s eye movements is more accurate at predicting a stroke than even MRI scans of the brain. “It could be transformative for these stroke patients,” he says, “ and someday, we might even be able to assess the eye movements just using the camera portion of an iPhone.”


Help for “Second Victims” 

Albert Wu never forgot his first medical error, or the support he received in its aftermath. As a medical student, he accidentally gave a patient an overdose of morphine. The patient immediately went into respiratory arrest but was resuscitated and turned out to be fine. Wu wasn’t. He wondered if this would be his last patient, until the nurse manager on the unit pulled him aside. She assured him he was a solid young doctor with a promising future, shared with him a mistake she had made in her career, and gently pointed out how he could prevent such mistakes in the future. “I was treated very generously by her; she said don’t be so hard on yourself. It completely changed my reaction to the interpretation of incident,” says Wu.

Indeed, as Wu, an internist at Hopkins, began research on medical errors (he was an early advocate for full disclosure of errors to patients, and sat on the board that wrote Hopkins disclosure policy in the late 1990s), he never forgot that medical errors affect staff as well as patients. He even coined a term in the literature—“Second Victims”—for staff traumatized by being witness to or participants in a medical error.

Most concerning to Wu was the culture of medicine that called for maintaining a façade of emotional calm regardless of whatever one has seen or done. It simply wasn’t human—or humane. Staff needed an outlet for their pain; Wu and his team have given them one. It’s called RISE—the Resilience in Stressful Events team. It’s a completely anonymous, volunteer peer support effort.

RISE was rolled out in November 2011 in the pediatrics department. “Most of the calls involved the death of a patient, but not necessarily an adverse event,” says RISE coordinator, nurse Cheryl Connors. “For people who experience these events, it’s so painful, and they don’t know what to do. The fact that they can call someone, a peer who is listening and reassuring them that they’re good people, provides them comfort and encouragement.”

Modeled in part after a University of Missouri program that has fielded more than 600 calls, Hopkins’ RISE program is just starting out, with a planned expansion through- out the hospital in 2013. Whether the program, which isn’t counseling so much as what Wu calls “psychological first aid,” offers a tangible benefit to callers has yet to be measured. But there’s little doubt that, without an outlet, staff can carry emotional scars for years.

Connors, who was part of the team caring for Josie King when King died from a preventable medical error in 2001, noted that “the standard response on the unit was not to talk about any of it; not her name, the situation, any of it.”

The silence had a price: Within a few years of the event, many of the nursing staff had left the unit. Connors invited a few of the nurses to be part of the RISE program and they talked about the pain they kept locked inside. “One nurse said she thought about that little girl every day of her life for a good six years. She has a niece with the same name. Every time she sees her, she can’t get Josie King out of her head for a month.”

Wu says research shows that disaster relief workers given peer counseling appear to benefit from the support; he’s hoping the RISE team will offer similar assistance, and keep staff from burning out over unresolved emotional issues surrounding patient events. The initiative also has implications for patient safety. With no outlet for their pain, Wu says, “the performance of these clinicians can be impaired as a result, potentially leading to further safety problems.”

DrPh candidate Hanan Edrees, who helped create and administer the staff surveys that showed a need for what became RISE, is encouraged by staff response. “There’s a lot of research saying clinicians working on units have the same [stress] burden as people in a war zone. They don’t realize they are carrying that much stress. What we, their peers, can tell them [through RISE] is that they are human, and the pain is normal.”

Reducing Alarm Fatigue
 
There’s no arguing that staff on most ICU’s face an “alarming” situation: A Hopkins study published in 2010 found that on the 15-bed Medical Progressive Care Unit, the staff faced nearly 1,000 alarms per day, with anywhere from 80 to 99 percent being of a non-actionable nature. This non-stop cacophony of, essentially, false alarms leads to a psychological state known as “alarm fatigue,” where staff begins to ignore alarms completely.

Reducing the number of unnecessary alarms and lessening alarm fatigue was the charge of the Alarm Management Task Force at Hopkins, which began work in 2006. Through a combination of engineering changes and a greater level of nursing autonomy, the task force was able to drop alarms on the Medical Progressive Care Unit by 43 percent, as reported in 2010 in the American Journal of Critical Care. Notably, the changes, such as engineering pagers to receive alarms, resulted in no apparent additional risk (and perhaps a benefit) to patient care.
 

Study author Maria Cvach says a major change was allowing nurses to manually alter the point at which certain alarms go off, depending upon the condition of a patient. As an example, changing oxygen saturation alarms to go off at 88 percent saturation instead of 90 percent greatly reduced alarms, with no harm to patients. Similar reductions involved changes in the parameters for high and low heart rate alarms. Cvach has shared the data at several national conferences, helping to spread the word about the potential benefits of alarm reduction. 

The task force was so successful that it recently received the annual health devices achievement award from the ECRI Institute, a patient safety research nonprofit. And the work is now standardized and implemented in all Hopkins medical units: “We prompt nurses to set parameters at the beginning of their shift,” says Cvach. “It’s right on the Electronic Patient Record: ‘Have you checked your alarms?’”

ICU of the Future 

The basic footprint of an Intensive Care Unit room hasn’t changed much since its ancestor, the Iron Lung wards, first made their appearance during the polio scourge of the 1930’s and ’40s. Over time, caring for the sickest of the sick evolved, but everyone was too busy to give much thought to how the parts related (or didn’t) to the sum total of care, says Hopkins intensivist Bradford Winters.

“We never [added technology] under the guise of what we wanted the room to really look like and function,” he notes. “It was more that as new technology came in, we just stuck it on the wall.”

That thinking is evolving now, as researchers work to figure out how clinicians, families, and caregivers can best interface with emerging technology to create a safer, more effective ICU. A $9.4 million grant from the Moore Foundation will allow Hopkins physicians and outside partners to imagine the “ICU of the Future” from the ground up. Everything from the physical layout of rooms to how people interact with equipment—and each other—will be in play, and the effort will involve experts from engineering, infec- tion control, systems analysis, psychology, safety and quality control, and more. 
One of the more fascinating players in the joint effort is Lockheed Martin, which is bringing its experience in defense and aerospace technologies to the clinical medicine environment. Lockheed’s expertise in getting multiple systems to, in essence, “speak” to each other in moments of crisis—as when a plane is trying to evade an incoming missile—may provide exactly the kind of inter-device communication, data analysis, and pre-crisis rapid response currently absent in today’s ICU’s.

Simulation and training tools already in use in aerospace are “two or three generations ahead of what the healthcare industry is using,” says Lockheed’s Corporate Director of Healthcare Initiatives, Robert Szczerba, who sits on the Armstrong Institute’s board.

He imagines ICU training that would provide a fully immersive, virtual experience: “Using virtual environments [such as headgear], you create the experience of actually be- ing in that ICU room. With avatars that can be controlled by other individuals [they can even be off-site], you could have events that trigger alarms, or have a patient’s electronic patient record create a virtual event that you, as a clinician, could respond to.” Such immersive training, he suggests, would be more effective “than the way it is now in hospitals, where you have nurses learning infusion pumps from thick manuals instead of a simple smart phone app.”

While Sczcerba and Co. are looking at engineering and computer solutions, Adam Sapirstein, a critical care specialist at Hopkins, is working with human factors engineers and bioethicists at the Berman Institute to examine the social and psychological factors that humans bring to bear on the ICU setting.

Sapirstein is focused on the interplay between a trio of “burdens” faced by ICU staff and how families and patients might play a role in easing all three: the “cognitive burden,” the sheer ability to cope with the inherent stress of the ICU environment; the “procedural burden,” in terms of skills and being able to step into the swirl of activity and triage what steps to take in what order; and the “burden of disease” itself.

Sapirstein uses the example of kidney transplant patient: While the operation is nearly routine, the follow-up ICU care is anything but. “Sometimes they have no venous access sites left because of long-term dialysis. And they may have diabetes and hypertension, and we can’t give them medicines they need through a venous catheter... there are many ways to have mistakes made in their care.”

For his part, Sapirstein’s colleague Dale Needham believes that the ICU of the future would be “like an inpatient rehab unit for critically ill patients where they could get comprehensive rehabilitation therapy all while on life support.”The critical care specialist has done studies showing that minimizing sedation and getting patients physically active in the ICU even while on a ventilator is the best way to avoid delirium and maintain vital physical function.

“There’s clear evidence,” says Needham, “that if patients get this approach to care they’re more likely to go home from the ICU rather than to a rehab facility.”

Putting Family on the Menu of Care 

Nurse Rhonda Wyskiel still vividly and painfully recalls the time 20 years ago when she wasn’t allowed to care for her mother in the ICU. Wyskiel was in nursing school when her mother was hospitalized. She had been used to taking care of her mom at home, but suddenly that caregiving was verboten and Wyskiel was furious.

“I was told I couldn’t wake her, or touch her. I couldn’t wipe her face with a washcloth or brush her hair. Yes, the nurses were in there, pushing all the right buttons, but they weren’t doing the things that were important to my mom. My mom loved having chapstick on her lips. No one ever did that. I asked if I could do it. They said they would, but they never did. I didn’t know I could speak up. My mom ended up passing away and I didn’t get to spend the kind of time with her I wanted to. I was angry about it, and thought ‘I can’t let this happen to anybody else.’”

Informally, she did just that when she became a nurse, working on units that embraced family involvement as a part of the Patient and Family Centered Care movement. But she wanted to do more, to send a clear visual signal that family help in caregiving was not only welcomed but actively encouraged for a host of tasks. Her solution takes the form of the Family Involvement Menu, a large, green, dry-erase board in each patient room of the Weinberg ICU at Hopkins.

The board is brilliant in its simplicity. For families, it’s a guide to numerous activities they can assist in, such as helping to turn a patient in bed or washing a loved one’s hair. For nurses, it’s a helping hand, one they definitely need. 


“One of the barriers we have [to providing complete care] is that we don’t have enough time to implement all the things we’re asked to do in a day,” says Weinberg Clinical Nurse Specialist Samantha Young, who assisted Wyskiel in the development and roll-out of the menu. “I always tell nurses to utilize their resources, and the families are a great resource. As Rhonda discovered when she polled families on the unit, everyone wanted to do something, they just didn’t know how they could help.”

Now they do, in ways that are more vital to outcomes than they might imagine. Young notes that early mobility following surgery is often a key to getting out of the ICU quickly, but nurses don’t always have time to walk their patients.

“One thing on the menu is ‘range of motion’ for increasing early mobility,” says Young, who has spoken about the family involvement initiative across the country, including before the Michigan Hospital Association. “When I lecture, I have a slide of one of Rhonda’s families, walking like a herd around a patient, in the morning, with coffee cups in hand. The people I lecture to have an overwhelming favorable response because they’ve never seen anything like the menu and they’d love to implement it.”

The menu also helps with infection control, by encouraging family members to provide oral care for the ventilated patient (which involves teeth brushing with an antiseptic or hydrogen peroxide)—important for preventing ventilator-associated pneumonias from developing. Oral care should be provided six times a day, but a nurse on a busy shift may miss a treatment.

In the Weinberg ICU, the menu looks like it’s here to stay. The protocol process is being built into electronic patient charts, which prompts nurses to both engage families in the menu and document caregiving activities in which families take part.

There is also research being planned to determine the menu’s effectiveness in improving measurable outcomes, such as reducing pain and decreasing ICU delirium. “I’m working hard on the evaluation piece and also building a readiness assessment into it,” says Wyskiel, who cautions that the units best able to take on the menu are those that have “a strong family-centered culture already.” *

 



10.4.13

THE LAST WORD?

(Published in Johns Hopkins Medicine Magazine)

THE LAST WORD
Paul McHugh and colleagues are on a crusade to radically rethink the manual that has come to define psychiatry. By Mat Edelson


It is a book both revered and mocked by those within the profession—a 943-page diagnostic tome that was never intended to be a Bible, yet nonetheless has been elevated to Final Word status by the majority of the nation’s practicing psychiatrists. it is not apocalyptic to state that the future status of the profession, its perceived capacity to help versus harm, may well rest on the book’s next chapter. So perhaps it’s only appropriate that, with the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (a.k.a. DSM) on the verge of descending from the mountain top, a former DSM acolyte-turned-heretic is leading his dis- ciples away from the dogma, and toward what he envisions as a promised land where mental illness and its sufferers will be seen and treated in a healing new light.

***
TO UNDERSTAND Paul McHugh’s love/hate relationship with the DSM is to understand the history of the book itself. Actually, it was more of a short synopsis in its first two incarnations, circas 1952 and 1968—nascent attempts to categorize and nomenclate the expressions of mental distress. But by the early-70’s, it was becoming clear that psychiatrists, depending upon their particular schooling and inclinations, couldn’t agree on diagnoses; their infighting was reminiscent of the Islamic parable of the Six Blind Men and the Elephant, who, depending upon what part of the creature they touched, concluded that the animal definitely was either a wall, spear, snake, rope, fan, or a tree.

There was nothing amusing about the diagnostic inconsistencies then facing psychiatry. A landmark study in 1971 showed that, when evaluating patients with identical symptoms, American psychiatrists generally concluded the patients had schizophrenia, while British psychiatrists leaned toward a diagnosis of major depression. Two years later, a study in Science went a step farther; researcher David Rosenhan sent volunteer “pseudo-patients” claiming audio hallucinations into a dozen psychiatric hospitals across the U.S., where they were all admitted, some for weeks, with a schizo- phrenia diagnosis. The hospital’s diagnostic criteria never ferreted out the fakers among their general schizophrenic population, leading Rosenhan to conclude, ominously, “It is clear that we cannot distinguish the sane from the insane in psychiatric hospitals."

Similarly, depending upon whether one landed upon the doorstep of a Freudian, Jungian, behaviorist, or neurobiologically-oriented psychiatrist, one could be diagnosed with a myriad of mental conditions requiring a plethora of different treatments. This lack of agreement on diagnosis—“reliability” in medical parlance—was rapidly becoming an embarrassment to practicing psychiatrists. 

“The field was riven by ideological factions,” recalls McHugh, who directed the department from 1975 to 2001 and is now University Distinguished Service Professor of Psychiatry. “We had to come up with a classification system, to get the psychiatrists to all agree on what disorders looked like so they could call at least call them the same thing.” 

Enter DSM III. Released in 1980 by the American Psychiatric Association (APA), it was staggering in scope: The work of hundreds of psychiatrists yielded symptoms for 265 diagnoses—for illness ranging from Borderline Personality Disorder to Catatonic Type schizophrenia. Yet hardly any of the diagnoses had established scientific “validity,” i.e., a verifiable base set of causes, notes McHugh. This initially greatly concerned him.

“I told [DSM-III editor] Bob Spitzer, ‘Gee, Bob, I don’t know; you’re starting off by naming stuff whose nature you don’t know,’” recalls McHugh. “And he said, ‘Nope, Paul, this is the way to do it.’ And for the first 10 years after, I thought, ‘he’s right!’” 

McHugh, who was always fascinated by methods—he calls them “perspectives”—for helping to determine causation for mental illness, hopped-on the DSM III train because of its implied promise: If psychiatrists, regardless of training and practicing philosophy, could agree on which symptoms inferred the same diagnosis, then researchers would have a standardized field of patients to study, and begin to uncover the base causes of different mental illnesses. This was vital, for while different methods of psychological therapy had long been studied, the root causes of what made people men- tally ill in the first place, and how best to choose between medications, therapy, and perhaps social services for treatment options, had received far less attention. 

DSM III was supposed to fill this research Q and A void, but that’s not what happened in the wake of its launch; psychiatric research still lagged as few diagnoses proved easy to pin to a single biological cause. Furthermore, the intentionally atheorhetical underpinnings of DSM III meant that “by rule, the APA’s editors wanted to stay away from thinking about causes,” says Hopkins psychiatrist Kostas Lyketsos. 

Meanwhile, the simplified “checklist” system of DSM III—which, critics say, tried to quickly nail down a symptom/diagnosis match using leading questions, without deeply investigating the patient’s bio/psycho/social history—was radically transforming psychiatry. As an example, McHugh mentions grief. In the wake of DSM III, it became classified as major depression, “so instead of [doctors] talking with the person about the meaning of their loss, they just started popping pills into them. They lost touch with the humanity of this most basic human emotion.” 

Still, the checklist concept was proving irresistible: Within a decade the APA found itself with a multi-million dollar bestseller on its hands, as both psychiatrists and physicians outside the field became fascinated by this elaborate diagnostic menu. 

“DSM III was meant as a tentative guide to diagnosis. Instead, it was treated like a bible,” says McHugh contemporary Allen Frances, who was editor of the 1994 DSM IV before becoming one of the fiercest public critics of the direction the latest DSM edition is taking. “People never took seriously DSM I and II. But the [symptom] sets of DSM III became the subject of cocktail party conversation, they became the subject of research, they became the way insurance companies paid for treatment. It decided who was sick and who wasn’t. It became the vehicle for determining disability benefits and who would get school services. And it was very important in the courtroom. But each time the DSM was used beyond its capacity, the use distorted itself and the place it was being used. It was meant to help psychiatry retain its credibility, but no one realized there’d be this vast over- shoot.” 

By the time DSM-IV rolled around in 1994, Paul McHugh believed that his field was in trouble. The DSM had led everyone to believe they could practice psychiatry: Consider that, with the help of big pharma’s “if you have these symptoms, ask your doctor” ads, nearly 80 percent of all psychiatric meds were being prescribed by internists and family practitioners—some in the course of a seven-minute HMO visit. Hardly time to deeply evaluate a diagnosis, let alone get to the cause of the problem. 

And it was that explosion of new diagnoses that most concerned McHugh. DSM IV contained nearly 300 diagnoses—three times more than DSM I. “In the early ’90s, things dawned on me. These diagnostic categories that the experts said existed were expanding way out of size. [Patients] only express [themselves] emotionally in so many ways; ultimately doctors began to put lots of people in the anxiety category and the major depressive category, and they were all getting the same kind of treatments,” says McHugh. He also believed the DSM was allowing faddish diagnoses to get in without scientific rigor. 

“DSM [inclusion] gave cover to certain kinds of major assumptions, such as the ‘recovered memory’ and ‘multiple personality’ syndromes. As soon as you said in the DSM that multiple personality exists, then people could build up treatment programs based on the fact that you repressed memories of sexual abuse as an infant. And they went wild on that,” says McHugh, whose 2008 book Try To Remember recounted his and other psychiatrist’s mostly successful efforts to discredit the existence of both conditions. 

The price of devotion was becoming too high for McHugh; the harm to families victimized by accusations of false memories of abuse, the infliction of stigmatizing diagnostic labels on seemingly “normal” people, the medicalization of kids to the point where 2-year-olds were being diagnosed and medicated for depression ... this was a catechism McHugh could no longer embrace. 

Especially because he had already found a better way.


***
IN THE MAY 17 ISSUE of the New England Journal of Medicine, McHugh, along with Hopkins colleague Philip Slavney, laid his concerns over the coming DSM revision on the line in an essay titled “Mental Illness—Comprehensive Evaluation or Checklist?” Lead author McHugh
didn’t mince words: “Identifying a disorder by its symptoms does not translate into understanding it. Clinicians need some heuristic concept of its nature, grasped in terms of cause or mechanism, to render it intelligible and to justify their actions in practice and research.” 

Leading members of the APA, well aware of the criticism of the DSM levied by McHugh and others, argue the latest version will be able, thanks to electronic publishing, to respond to and potentially correct areas of diagnostic concern within the tome. “I don’t like the term ‘bible,’ says David Kupfer, who is lead editor for the current revisions. “A bible is written once, and we can write commentary on it, but we can’t change it. I think it’s important to convey the fact that this DSM is going to be a living document. We’re calling it DSM 5.0; we see a 5.1, 5.2, and a 5.3, not rewriting the whole thing, but where there is new information, and good thresholds met to change criteria, we want to be able to do that and not have it wait in the queue for 20 years.” 

McHugh, who maintains a cordial relationship with Kupfer, respectfully disagrees on waiting to implement change. His solution—or at least a suggestion of where DSM 5 should head immediately—is a direction that ironically harkens back to psychiatry’s roots at Hopkins of nearly a century ago. That’s when Adolph Meyer established the first comprehensive methods for evaluating a patient’s life—the origins of the bio-psycho-social model. 

That was supposed to be DSM’s 21st-century model as well. But even the APA’s then-President Steve Sharfstein admitted in 2005 that his field had turned into ”a bio-bio-bio model” dominated by “a pill and an appointment.” 

For McHugh, such an approach is anathema to the way he’s taught the psychiatric arts to thousands of Hopkins medical students over the past 40 years. While it’s impossible for students to ignore the DSM—at the very least, it guides insurance reimbursements that sustain medical practices— McHugh says the DSM is best seen by students as a general field guide to psychiatry, much in the same way amateur bird watchers might look at an Audubon guide to separate robins from starlings. 

But to really figure out what makes starlings or people tick—or at least get them flying toward their own personal True North again—McHugh’s teachings have balanced the DSM’s black-and-white influence with his version of modern day Meyerism, which he’s written about in The Perspectives
of Psychiatry.
First published in 1986 (a second edition came out in 1998), the book, co-written with Philip Slavney, urges psychiatrists to invoke four perspectives with each patient to get to the heart of their condition. The book is considered the foundation of Hopkins clinical training, and its influence has reverberated across the field.


“It is a book for the ages,” says Margaret Chisolm, who directs psychiatric education at Bayview and was schooled in McHugh’s methodology. “They call it the recipe for applying the bio-psycho-social model.” Duke’s Allan Frances has an equally humanistic view of McHugh’s perspectives: “Hippocrates [says] it’s far more important to understand the person who has the disease than the disease the person has. Paul’s [perspectives] are following in those footsteps,” says Frances. 


If it were up to McHugh, the perspectives would become a new organizational structure for both the DSM and the field at large. They include categorizing diagnoses by:

      
• Brain Diseases, such as schizophrenia

  • Personality Dimensions, such as obsessive-compulsive
    disorder
  • Motivated Behaviors, such as alcohol addiction and an-
    orexia
  • Life Encounters, including grief and post-traumatic stress

    disorder 

    To the layperson, such perspectives appear at first glance to be both subtle and contradictory. Neuro-psychiatrists might suggest that all mental illness is caused by brain disease. Similarly, in a sort of chicken-and-egg conundrum, does someone with anorexia not eat because they are obsessive-compulsive, or does the desire to not eat become obsessive over time? 

    To McHugh, this is where the monochromatic current viewpoint of the DSM has to yield to the investigation, reflection, and consideration of numerous causal factors that can be brought forth by applying the perspectives to each psychiatric patient. Instead of a rush to diagnosis, the em- phasis becomes about understanding, insight, and appropriate treatment.

    Each perspective is brought to bear, like applying rotating gel lights of different colors to the same stage. Subtle? Yes. Field changing? Perhaps. It’s worth noting that, in a journal noted for vigorous debate, there was no rebuttal from the APA or others to the McHugh/Slavney call-to-arms. If anything, some of the country’s top psychiatrists are embracing his message.

    “I think Paul’s perspective’s nail it,” says University of Iowa psychiatrist Arnold Andersen, an eating disorders authority who spent 15 years at Hopkins working with McHugh. “They address the issue by recognizing that different modes of reasoning are needed to appreciate the real life, categorical differences between different types of psychological distress. 

    “Take alcohol abuse,” continues Andersen. “It’s a behavior with different sources. There isn’t any one treatment until you trace back the origin. The little old lady who has sherry before her Canasta game to calm a benign hand tremor is very different from the 13-year-old who just loves alcohol and has no side effects [that’s almost always genetic] and from the person who uses alcohol to cope with a high stress situation. To categorize those three on a single checklist implies the job is done. 

    “By contrast, Paul’s approach is the soundest I know. The perspectives have a methodological approach; when he finishes with a global assessment [of a patient], you have a comprehensive guideline on how to begin with treatment. If DSM 5 would put their different disorders into his categories, you could begin to reason in a far more sound way.” 

    “I have eight pages on Paul’s system,” says Harvard psychologist Jerome Kagan, referring to his own book, Psychology’s Ghosts: The Crisis in the Profession and the Way Back (2012). To Kagan’s thinking, while McHugh’s first three categories can all lead back to biological roots, “Family four was his brilliant idea; that any of the symptoms in families two [personality dimensions] or three [motivated behaviors], can have mainly environmental causes."

    “Consider,” Kagan says by way of example, “that the best predictor, right now, in any part of the world, of whether you’re going to have anxiety, depression, impulsive aggression, gambling, or drug abuse is the social class in which you grew up.” By solely using DSM, social status might never be discussed on the way to, say, a diagnosis of depression with resulting treatment being anti-depressive drugs. However, using McHugh’s approach that considers environment, the diagnostician might uncover that the onset of the patient’s depression coincided with his being laid-off six months previously, and part of the long term therapy might include engaging social workers to help the patient find employment. 

    McHugh also notes the perspectival approach could be used by family practitioners to help them better evaluate which conditions can be handled comfortably in an internist’s office—especially given their long-time familiarity with most patients—and which should be referred out to psychiatrists, who in many cases could work with the internists to help diagnose and best manage care. 

    McHugh said he wrote the NEJM essay because, after more than a generation of teaching his perspectives he wanted to give them a public airing, especially in light of the development of DSM 5, which has been in the study group phase since 2004 and is set to be released next year. Given that, as he notes, the APA will “make millions in royalties” from the publication of DSM 5, it would be a “failure of leadership” if the book is identical in scope to the previous two that focused exclusively on descriptions of illness. “Every discipline has a right to go through a descriptive phase. We’re not blaming anybody for that,” says McHugh. “But you begin to criticize [leadership] when they say they can’t move out of the descriptive phase. We’re saying, after a generation of description, you’re going to bring out a new edition and the only thing you’re going to tell us is you’ve discovered a few other diagnoses? You don’t need a new field guide, if that’s the best you’re going to do. The time has come to move toward explanation.” ***
    FOR AS MUCH as the DSM is being debated for its impact on patients, far less chatter surrounds the effect it has on medical students and residents at institutions where it is treated as The Book. McHugh strongly believes that such “training to the test”’ has the effect of driving would-be psychiatric residents into other fields.
     

    “The textbook education using just the DSM does such an injustice to the field,” says second-year Hopkins psychiatric resident Rachna Hundal. Her own medical school psych rotation in Philadelphia, she says, “was just about DSM. We were taught based upon DSM definitions. Our exams were DSM definitions. That education did not draw anyone into the field.” 

    Even with a serendipitous mentor or attending physician who can see beyond the DSM and excite a student about psychiatry, many young doctors arrive at Hopkins after medical school—or even residencies—completely dependent upon the manual.

    Kotsas Lyketsos, chairman of psychiatry at Johns Hopkins Bayview, worries that this can draw the wrong people to the field. “The DSM gives the appearance that psychiatry is easy, so people who are interested in basic research would be happy to come through psychiatry, learn the checklist, get the imprimatur of being a psychiatrist [with no intent of engaging clinical practice], and not really learn what it’s really like to think through a problem facing a patient.” 

    What Lyketsos and colleague Margaret Chisolm are doing is taking McHugh’s perspectives one important step farther—to a place that they hope will attract more medical students to psychiatry. McHugh’s textbook on the subject is considered a masterwork, notes Chisolm, but it’s not easily digestible for students relatively new to the game. The joy has always been in listening to the entertaining McHugh speak, she says. This oration was the most accessible way to pass along his insights about the perspectives to students. It fell upon Lyketsos and Chisolm to set the sermons in stone, or as Lyketsos jokes, given his Grecian upbringing, “we had Homer; what we needed was the Iliad.” 

    Their soon-to-be-released book, Systematic Psychiatric Evaluation, seeks for the first time to put rules to McHugh’s perspectives and give diagnosticians more confidence in their global assessment and treatment of patients. “Rule number one is, you want to take a complete history, and there are certain elements that go into that. You want to ask general questions that are not directing the answers,” says Lyketsos. “Remember, in DSM you can’t do that; in DSM you’re directly asking questions that say ‘do you have this symptom or that symptom?’ So if you were strictly applying just DSM, you could not ask open-ended questions.” 

    In the end, what Lyketsos, Chisolm, and McHugh are looking for in future psychiatrists is—well, there’s no other word for it—perspective. It’s not about throwing out the DSM. “It drives treatment authorization, so you need as a practitioner to learn enough about it to use it, just as long as it doesn’t drive patient care,” says Lyketsos. Instead it’s about emphasizing the “perspectival approach” to best guarantee that every appropriate treatment option can be explored. 

    Will the approach ultimately find its way into DSM 5? Probably not, given the publication’s deadline of 2013. But by going public with his critique of the DSM process, McHugh is no longer a lone voice in the wilderness. 

    “Paul is a man of conscience and courage,” says Frances, who criticized DSM 5 because of his concerns that proposed expanded new diagnoses could, as he wrote in a New York Times op-ed in May, “define as mentally ill tens of millions of people now considered normal.” 

    “Paul is part of the inspiration of me [writing publicly] about this stuff,” says Frances. “It’s not really part of my personality to be a crusader, but he’s an example that you can’t just sit on the sidelines.” 

    Not while there's work still to be done. *

(U.S.) OPEN SECRETS

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(Published in Polo.com magazine, Summer, 2006)


Open Secrets

A locker-room attendant turned award-winning writer reveals how McEnroe, Connors and some happy-go-lucky Australians acted behind the scenes at the 1984 U.S. Open...By Mat Edelson

I dreamt of being lots of things growing up. NASA astronaut. Mets centerfielder. Miss Litsky’s boyfriend (2nd grade teacher. HOT!).

However, it’s safe to say that eventually becoming a men’s locker room attendant at a major (or even minor) sporting event never once crossed my mind.

As the man says, “never say never.”

When the call came from a similarly struggling but temporarily employed friend offering me said gig at the 1984 U.S. Open, I should have known better than to accept. Earlier that spring, at golf’s U.S. Open, the gods of sport enjoyed a few laughs at my expense. I was stage-managing one of the holes near the turn for ABC Sports. Just yards from my position barely off the green, Jack Nicklaus stood over a short putt.

BEEP!—BEEP!!—BEEP!!!

Great, I thought, head swiveling as the headphones muffled my directional sense, what moron in the gallery forgot to turn off his watch alarm?

As I turned back toward the green, The Golden Bear’s violent gaze informed me that I was the moron. Nicklaus’ eye-volley lasered my brand-new, never-read-the-directions digital Casio on my wrist. Panicked, I pushed all of its buttons at once. Up came the time in Tokyo, followed by the day in Spanish (Jueves!), and finally a stopwatch pleasantly clicking off the number of seconds I’d pissed Jack off.

00:08 (BEEP!)…00:09 (BEEP!!)…00:10 (BEEP!!!).

I made the mistake of looking up again, right into those searing eyes. If I’d been a pregnant woman I’d have broken water right there on the fringe. With every vital fluid in my body threatening to evacuate by the nearest exit—BEEP!—I did the only thing humanly possible.

I took off the watch and beat it to death in front of God, America and Nicklaus. Then I put it in my pocket as it expired (beep), smothering it in my closed fist (beep) while praying (bee-yoop) that Jack would both make his putt and never, ever recognize my face again.

Given that history, I should have seriously considered the trouble I was likely to foment playing Cabana Boy to the Top 16 tennis players in the world. It didn’t help that I wasn’t in awe of them, mostly because I didn’t take to the game as a kid. (Why I could crush a fastball with a round bat yet whiff on a tennis ball with a flat racquet is a mystery I decided early on not to solve in this lifetime). Yet it was this lack of reverence, my willingness to engage the players as people first, that made those two weeks so memorable.

My duties were simple and direct: When a player yelled “LOCKER!” I was to come a-runnin’ pronto, as I held the keys to the kingdom (or at least the master key to their locker). In between bellowing, I was to keep the showers stocked with soap (Ivory—99 44/100% pure) and put the appropriate liquids on ice (Gatorade and soda for all but the Aussies. They drank Fosters, oil can-size. Sometimes before matches. No lie.).

As for the players, most clearly preferred anonymity to camaraderie, barely making an appearance in the locker room. Ivan Lendl splashed in for his first match wearing a bright red Team Canada hockey jersey, but after that he became as invisible as Nicole Ritchie post-Paris. I think the Swedes—Mats Wilander and Stefan Edberg—were there, but they talked so little, who could tell?

There was also a diapered chimp named ‘Zippy’—I knew this because his blue shirt said so—standing at the locker room entrance, a shy Robert Duvall unobtrusively taking in the scene, and comedian Alan King, completely oblivious to his utter incongruity, who had somehow commandeered a locker. He even had a key he used to get tennis-dressed before leaving for—what? A quick warm-up with Martina? Doubles with Nastase? Stunned into silence, I reached quickly for a higher power. Dear Lord, if that man returns, please don’t make me have to see him naked.

Some perks of the players’ position (and mine) soon became obvious. Tennis players hate wearing worn sneakers. Now, what’s worn for you and me (say, two years) and what’s worn for a top pro (say, two sets, thank you, Mr. Shoe Sponsor), varies greatly. In a move reminiscent of mindlessly tossing the dog the burnt ends of the roast, most players could care less where their sneaker scraps end up, or with whom. Suffice to say, Sheldon (Size 12’s), Bobby (14’s), and the rest of my poverty-stricken peeps were ankle-deep in nearly new leather until Reagan left office.

As for me, I wore 9 1/2s. So did the ever-cantankerous John Patrick McEnroe, Jr. I quickly learned two things I’d never heard reported about McEnroe. First, he rips the soles out of his shoes before he plays. Second, he slices off a corner of the leather by the little toe. Of course I reported these facts dutifully every time someone asked why I was wearing sneakers with the little toe gouged out (talk about an ice-breaker). I also learned another tidbit about Mr. McEnroe.

He does not suffer fools gladly.

And I? I might as well have had a bull’s-eye on my forehead.

Returning from a victorious match, McEnroe entered the locker room wielding a racket that looked like it had been El Kabonged over someone’s head. He’d already been fined $500 for ‘abuse of racquet.’ I wondered what the fine was for ‘obliteration of racquet,’ for this beauty had experienced a mortal compound fracture. I mean the head of the racquet was bent ninety degrees through the middle. Nevertheless, McEnroe handed me the completely dysfunctional tool.

“Here,” he said, “you might want this.”

“What,” I politely replied, mouth firmly engaged before brain, “am I going to do with this?”

Somewhat taken aback—Locker boy speaks?—McEnroe looked at the racquet, looked at me dismissively, and waved towards the door. “Give it to someone out there, a souvenir or something,” he said. I headed dutifully for the door, but as I grasped the knob a random blob of information gleaned during the week bobbed to the surface.

One of the junior players had told me that to control costs, lower-ranked players generally were allotted only two racquets by their sponsors. Returning a broken racquet was the only way to secure a replacement gratis. With this helpful bit of data now accessed, I turned at the door, walked back to McEnroe, and earnestly uttered the following ridiculous drivel:

“Uh, John, uh, I understand that if you give this racquet back to your sponsor, they’ll give you a new one for free.”

McEnroe stared at me, mouth agape, as if I was a bacterium complaining to the lab tech about the way my slide had been stained.

“I am the NUMBER ONE (BLEEP’N) TENNIS PLAYER in the (bleep’n) WORLD,” he said. “I don’t HAVE to worry about my (bleep’n) SPONSOR giving me another RACQUET.”

Point, McEnroe.

This time I got past the door, handing the gift to some grateful groupie. When I returned to the locker room, head trainer Bill Norris angrily beckoned me over.

“You,” he said, “do not know your place.”

As condescending as I thought the remark was at the time, 22 years later I realize Norris was right. Still, immaturity aside, I had a blast. I even received a racquet I kept (this one had only a hairline crack), courtesy of Jimmy Connors. Despite losing a nearly four-hour semifinal match to McEnroe, Connors spent the post-midnight hours in the locker room, surrounded by family, a few friends, and a certain locker room attendant he insisted should stay and relax. At one point, Connors’ five-year-old son Brett scattered a cup of ice on the carpet, but before I could even move Connors motioned me to stay seated. “Brett,” he said, “don’t make that man pick up the ice. You go get it.”

It would be a few years before I would again return to the locker room, this time as a credentialed reporter. But if my time at the Open taught me anything, it’s that if you really want to know what’s going on behind the scenes at a sporting event, don’t talk to the players, but to the guy collecting the towels.