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Alert Number 251

The Best and Worst of American Medicine

Date: September 19, 2007

Did you ever wonder why it is necessary for you to go through all the hassle of learning about your disease and therapy options? Surely there are good doctors there whose job it is to take care of you, make all the right decisions? Who needs patient advocates, surely the “system” will make sure everything is done right?

Below is a longish article that I found interesting. We have probably the most sophisticated healthcare system in the world, but it is clearly dysfunctional in some crucial respects. As patients with a life threatening, incurable, and yet chronic health problem, we are at risk of falling between the cracks, unless we get smart about it. I strongly urge each and every one of you, have a friend or family member with you to play defense, take notes, ask questions, listen with second pair of ears and look with a second pair of eyes, when you are going through therapy.

Knowledgeable patient advocates are hard to come by, on an individual basis. But if electronic hand-holding works for you, I consider it an honor and privilege to help in any way I can.

Be well,

Chaya
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Press Report

Article from TIME Magazine

Sunday, Apr. 23, 2006

Q: What Scares Doctors? A: Being the Patient

By NANCY GIBBS, Amanda Bower

It's easy to imagine that doctors don't get sick. Surely the hygienic shield of the sterile white coat guards them from ever having to put on the flapping gown and flimsy bracelet, climb meekly into the crisp bed and be at the mercy of the U.S. health-care system. And if somehow they did enter the hospital as a patient, physicians ought to have every advantage: an insider's knowledge, access to top specialists, built-in second opinions, no waiting, no insane bureaucratic battles and no loss of identity or dignity when you turn into the "bilateral mastectomy in Room 402." But it doesn't usually work that way. While doctors are often in a better position than most of us to spot the hazards in the hospital and the holes in their care, they can't necessarily fix them. They can't even avoid them when they become patients themselves. When Dr. Lisa Friedman felt the lump in her breast in the summer of 2001, she did — nothing. "I just sat on it," she says, "because I clicked into the mode of being physician, not patient, and I thought, 'Most lumps are not cancer, I'll just watch this.'" That was her first mistake.

By September Friedman had watched long enough. An internist in a practice that covers much of southern Wisconsin, she went to her radiology department to schedule a mammogram. The administrators turned her down: her HMO paid for routine mammograms every two years, and she'd had one 18 months before. "I said, 'Wait a minute, I feel a lump. This is not routine.' They still wouldn't let me do it."
This is the stuff bad movies are made of. Friedman had to appeal to the HMO's board of directors. "I said, 'I'll pay for my own mammogram. Just let me get it done.'" She won her appeal and finally had the test. "They didn't even have to do a biopsy," she says. "The radiologist just looked at it and said, 'Oh, my God. You've got breast cancer.'"

The education of Lisa Friedman, patient, had begun. Like any other patient — and perhaps even more so — she had to drag information out of her physicians. "They were treating me like I was knowledgeable, but they weren't listening to me." When she found out that the cancer had spread to several places in one breast, Friedman told her surgeon there was no need to preserve her breast for cosmetic reasons; she was more concerned that the cancer be entirely removed. She asked for a mastectomy — but she was told that a lumpectomy would do the job fine. "I went along with it," she said. That was her second mistake. Her breast was riddled with tumors. "They ended up doing three lumpectomies. They were cutting away at my breast until I had no breast left. I said, 'Will you please take it all off?'"

Friedman's doctors weren't incompetent. They didn't operate on the wrong breast or give her the wrong drugs or commit any egregious medical errors — and that is the whole point. While there are bad doctors practicing bad medicine who go undetected, that's not what scares other physicians the most. Instead, they have watched the system become deformed over the years by fear of litigation, by insurance costs, by rising competition, by billowing bureaucracy and even by improvements in technology that introduce new risks even as they reduce old ones. So doctors resist having tests done if they aren't absolutely sure they are needed. They weigh the advantages of teaching hospitals at which you're more likely to find the genius diagnostician vs. community hospitals where you may be less likely to bring home a nasty hospital-acquired infection. They avoid having elective surgery in July, when the new doctors are just starting their internships in teaching hospitals, but recognize that older, more experienced physicians may not be up to date on the best standards of care.

Most doctors freely admit that they do everything they can to work the system. "As much as we all value fairness, if you think you can get some special attention for someone who's important to you ... I don't know anybody who would not play that card," says Michael McKee, vice chairman of psychology and psychiatry at the Cleveland Clinic. But talk to doctors about their experiences and you'll be surprised by how little power they have to bend the system to their will.

This is one abiding irony of progress. The most wondrous technology exists that can pinpoint the exact location of a tumor, thread a tiny catheter up into the brain to open a clogged artery, pulverize a kidney stone without breaking the skin. But the simple stuff — like getting an MRI on time, being given the right drugs at the right time, making sure everyone knows which side of your brain to operate on — can cause the biggest problems. "A patient with anything but the simplest needs is traversing a very complicated system across many handoffs and locations and players," says Dr. Donald Berwick, a pediatrician and president of the Institute for Healthcare Improvement. "And as the machine gets more complicated, there are more ways it can break."

HOW TO GET THE RIGHT CARE

"Doctors are terrible patients because they know too much," says Dr. Pamela Gallin, director of pediatric ophthalmology at New York Presbyterian-Columbia Medical Center and author of How to Survive Your Doctor's Care. "They can't be both doctor and patient at the same time." They don't like appearing weak; they are schooled in a culture of stoicism and sacrifice that cautions against complaint. In studies of the behavior of doctors, most admit to writing their own prescriptions, self-diagnosing, avoiding checkups. When they do have to enter a hospital as a patient, they struggle with their role, scanning their bedside monitors and watching their colleagues so closely that everyone can get a little spooked. "I don't like the role reversal," says McKee. "I suppose it's the way you feel when you're 80 or 90 and your kids are taking care of you. It doesn't feel right."

But their innate resistance to treatment carries a message for the rest of us as well. It requires almost a stroke of luck to enter a U.S. hospital and receive precisely the right treatment — no more, and no less. A landmark Rand Corp. study published in 2003 found that adults in the U.S. received, on average, just 54.9% of recommended care for their conditions. Average blood sugar was not measured regularly for 24% of diabetes patients. More than half of all people with hypertension did not have their blood pressure under control; one third of asthma patients eligible to get inhaled steroids did not get them.

Even more insidious is the danger of overtreatment. With well-insured patients inclined toward hypervigilance, doctors afraid of missing something and a reimbursement system that rewards testing over talking, there is embedded in the system a dangerous impulse toward excess. Specialists are typically paid much more to do a procedure than the family doctor who takes the time to talk through the treatment options. A doctor who does a biopsy may be paid as much as $1,600 for 15 minutes' work, notes Dr. Jerome Groopman of Harvard Medical School. "If you're an internist, you can easily spend an hour with a family where a member has been diagnosed with Alzheimer's or breast cancer, and be paid $100. So there's this disconnect between what's valued and reimbursement."
And yet sometimes, talking is the more important and certainly the safer treatment. Ten more minutes spent taking a family history can reveal clues that prevent a misdiagnosis or an unnecessary test; that childhood injury, that illness during a trip abroad, that family history of excessive bleeding. When the orthopedist hears that Mary broke her leg when she was 2 years old, he can hope that the dark spot on her tibia may not be a deadly bone cancer but something more benign, like a Brodie's abscess. He may still remove the abscess but not have to do a whole invasive tumor workup. Doctors talk privately about the cost — economic and physical — of the bias toward overtesting. They are less beguiled by flashy technology, more aware of the risks of even simple procedures and thus more willing to trust their doctor's instincts. If everything in his experience tells your doctor that the lump on the back of your hand is a ganglion and not a malignant tumor, it may not make sense to run the risk that goes with surgical excision. If your baby is born after a very long labor but shows no sign of infection, then agreeing to a spinal tap just to be sure may not always be worth the risk.

Doctors will argue privately that there is not enough watchful waiting and re-examination anymore, partly because patience literally doesn't pay. "The areas in the U.S. with the highest rates of use of hospital beds, intensive-care units, specialist consultations and invasive testing don't have the best quality of care and outcomes," says Berwick. "In fact, they often have the worst. It would be a great advance in both quality and cost if somehow the American public came to understand that 'more care' is not by any means always 'better care,' and that new technologies and hospital stays can sometimes harm more than they help."

HOW TO FIND THE RIGHT DOCTOR

You would think doctors have a great advantage in knowing whom to see for their particular problem, and in one sense they do: they can tap into the medical grapevine to find out who has the best reputation and the most experience with a given procedure. They just have to hope that person isn't their colleague down the hall. In a system that can seem infuriatingly impersonal, a little distance is a valuable thing.

Doctors will often choose not to be patients at their own hospital. There's a risk that when treating a colleague, the physicians may lose their objectivity and the patient his or her privacy. The same holds true for anyone who goes to a doctor who is also a friend; you run the risk of losing both. This is the hard fact that doctors know and patients have a hard time believing: it's not just bad doctors who screw up. To an outsider, everything that happens in a hospital has an air of magic, and the people in the coats seem like wizards. But doctors know that physicians are people too, who can get tired, or distracted, or simply one day fall a millimeter short of perfection, sometimes with disastrous consequences.

Dr. Robert Johnson, a busy Southern California orthopedic surgeon, skidded instantly from doctor to patient one day as he walked toward the operating room, scrubbed hands raised, and slipped on a freshly mopped floor. He broke the scaphoid bone in his right wrist, a bone that anchors all the bones in the hand, especially vital for the physically demanding work of an orthopedic surgeon.
So he called on a friend who was a renowned hand specialist. "I knew the procedure well," he says. "Remove the scar tissue and place a tendon from my own body to stabilize the other hand bones." Naked under his hospital gown, Johnson was rolled into the operating room cracking jokes with his doctor. "I felt bad to be a bother," he says. Together Johnson and his friend decided to go with general anesthesia. An hour later, Johnson woke up and said, laughing, "That was quick!"

But his friend the surgeon was distraught. He had used a tool called a rongeur to chew up the scar tissue and had accidentally chewed up the scaphoid bone — ending Johnson's ability to do orthopedic surgery. "The actual damage happened in a matter of seconds," he says. "I heard later that he had told my wife while I was still under anesthesia. She said, 'You go and fix it before he wakes up!' What she didn't know was that there are some things that can't be fixed."

Although Johnson thinks his case was a "rare aberrant fluke," that's not exactly true. More than 1 in 3 doctors in a 2002 survey by the Harvard School of Public Health reported errors in their own or a family member's medical care. Dr. Robert Wachter, chief of the medical service at the University of California, San Francisco Medical Center, who co-wrote last year's best seller Internal Bleeding: The Truth Behind America's Terrifying Epidemic of Medical Mistakes, says he has seen it all: patients who had the wrong leg amputated, were given the wrong (and deadly) medicines, had surgical instruments left behind in the abdomen. Not all the errors are due to ignorance or incompetence; even the best doctors can make mistakes.

Imagine the dilemma of a physician trying to watch over a loved one when things are going badly. Sherwin Nuland is a celebrity doctor; he was a surgeon for 30 years, teaches surgery and gastroenterology at Yale and is author of How We Die, which won a National Book Award. Last fall his daughter, 21, faced a crisis. She had been born with hydrocephalus — fluid on the brain. A shunt was put in, which worked fine for 21 years until it closed down. "She needed a total of four operations to get this straightened out," Nuland says. The experience tested his self-control. "It helped that I knew what [her doctors] were going through as these complications occurred — how badly it was affecting them emotionally. Because she was the daughter of a senior member of their faculty." But in an emergency, emotion is not an antidote for much of anything. However much we long for Marcus Welby, it is less important to know and love your doctor than to trust and respect him. And your prospects may benefit from his treating you with the cool commitment of a professional rather than the comforting warmth of a friend.

HOW TO FIND THE RIGHT HOSPITAL

Finding the right doctor is important: but so is choosing the right hospital. There are all kinds of guides that can tell you what percentage of heart-attack patients were prescribed beta blockers upon arrival or sell you a report about your particular doctor. The problem is that it takes a doctorate in statistics to sort out the data. "The world's best orthopedic surgeon will be sent everyone's disaster cases," says Wachter. "He may be spectacular and still have worse outcomes than the crummy surgeon across the street who has better outcomes because he gets the slam dunks." Almost every knee replacement results in few days of post-op fever. It's normal — but it can still be cited in a report on the "high rate of postoperative infection."

The most basic challenge facing every patient is knowing when to go to the local community hospital and when to seek out the major teaching center. For all their fame and all-star doctors, teaching hospitals carry risks of their own. The sickest patients often have compromised immune systems and may need to be treated with broad-spectrum antibiotics — which increases the chance that antibiotic-resistant strains of staph and other bacteria will make the rounds of the intensive-care unit. As a rule, doctors decide where to go based on how sick they are. For fairly routine care — a hip replacement, a hernia operation — they will often opt for the convenience and comfort of a community hospital. But if there is any mystery about the symptoms, the rule is Get Thee to a Teaching Hospital. The meals will probably be worse, the beds may not get made on time, a spirit of competent chaos may abide; but for complicated surgeries, the mortality rate is typically lower because the volume of cases is higher and the surgeons are more experienced. Plus, the presence of all those interns and residents has a way of keeping doctors on their toes.

There is, however, at least one exception to the rule.

HOW TO SURVIVE JULY

Harvard's Groopman, who has written three books about the doctor-patient relationship, lived through his own doctor-patient nightmare. It started when his son had a medical emergency in July, which every doctor knows is the worst of all months to go to a teaching hospital. "The new interns and residents begin July 1," he explains. "There's a very morbid joke: don't get sick on the July 4 weekend." But years ago, when he and his wife were new parents, they were visiting her family in Connecticut for the holiday when their 9-month-old son became cranky, ran a fever, got diarrhea. They went to a local pediatrician, who essentially said, 'Oh, it's nothing: you're just neurotic doctor-parents. Give him some Tylenol.'"

By the time they arrived back in Boston, it was clear to both of them that the baby was very sick. "He was flailing and arching his knees to his chest. So we rushed to the emergency room of the Children's Hospital." Their son was seen by a brand-new surgical resident, who diagnosed an intestinal obstruction. "This resident said to my wife — this is now midnight — 'Well, in my experience, this can wait until morning.'" Since his experience at that point in his residency amounted to roughly three days on the job, the Groopmans pulled rank. They called someone who called someone who happened to be home on the holiday, and they wound up with a senior surgeon who came in, did an emergency operation at 3 a.m. and, Groopman says, saved his son's life.

That was an extreme lesson in the value of experience; no one recommends seeking out doctors who are brand new on the job, and doctors admit to scheduling elective surgery — even planning childbirth — around the intern calendar. This is not paranoia: the average major teaching hospital typically sees a 4% jump in its risk-adjusted mortality rate in the summer, according to the National Bureau of Economic Research. But there is a larger issue that doctors argue about: which matters more, information or experience? Broadly speaking, a younger doctor is likely to have been trained in the newest surgical procedures, be more up to date on the literature, and be more open to new techniques. Older doctors have had more years to develop the instinctive diagnostic skills that can make the difference in complicated cases and may be skeptical of innovations that are driven more by marketing than medicine.

Older doctors are also worried that rules designed to make young doctors' lives easier may make patients' outcomes worse. Back in the day, grizzled veterans say, a medical resident was called that for a reason: he — and they were all men — actually lived in the hospital. "We were aggressive about our training," recalls a former surgical resident at Boston's Brigham and Women's Hospital. "The only thing wrong with every other night call was that you missed half the good cases." But these long hours of dedication came at a cost: tired doctors made mistakes. Studies showed that long work hours increased stress, depression, pregnancy-related complications, car wrecks and damage to residents' morale and personal life. So now residents' hours are limited to 80-hr. workweeks averaged over a month, in shifts that are limited to 24 hours of patient care, with at least 1 day off in 7. Remaining on call in the hospital is limited to every third night. Hospitals that fail to comply can lose their accreditation.

The reforms made intuitive sense; but the unintended result, older doctors warn, is a 9-to-5 mentality that detaches the doctor from the patient. They fear that young doctors don't get the experience they need or build the instincts and muscle memory from performing procedures so many times that they can do them in their sleep. Even the residents may agree: in a 2006 study in the American Journal of Medicine, both residents and attending physicians reported that they thought the risk of bad things happening because of fragmentation of care was greater than the risk from fatigue due to excess work hours. Other residents say that while they may feel more rested, they sense that they are not learning as much or as fast as they need to.

"I know that I will not like it 20 years from now when I'm 68 and having to be taken care of by these guys," says Dr. Paul Shekelle, a professor of medicine at UCLA. "It's all shift work now. When 5 o'clock comes, whatever it is they're doing, they just sign it all out to the 5 o'clock person. It's eroding the sense of duty, or commitment to being the person responsible for a patient's care."

But younger physicians may have other advantages — like a fresher sense of the latest standards of care. Many doctors have concluded that there is something of a sweet spot on the age-education-experience continuum. They seek out clinicians who are no more than 10 years out of residency, old enough to have some mileage, young enough to be up to speed. There is actually some hard data for this rule. A review published last year in the Annals of Internal Medicine examined the connection between a doctor's years in practice and the quality of care he or she provided. To the surprise of everyone — including the review's author, Harvard Medical School's Dr. Niteesh Choudhry — more than half the studies found decreasing performance with increasing years in practice for all outcomes assessed; only 4% found increasing performance with increasing age for some or all outcomes. One study found that for heart-attack patients, mortality increased 0.5% for every year the physician had been out of medical school.

HOW TO SURVIVE TECHNOLOGY

We think of hospitals as cathedrals of science, yet doctors walk around with their pockets stuffed with 3-by-5 cards on which they write patient information; when they sign off for the day they read from the card to the doctor coming on duty. "My pizza parlor is more thoroughly computerized than most of health care," says Berwick. It's easy to see the advantage of giving everyone easy access to a patient's history and test results. But getting there can be painful. Enter a hospital when it is in the process of introducing more computers, they say, and you can hear the sound of nurses growling. Doctors using laptops sometimes have to wrestle with incompatible systems, manually retyping lab results from one computer into another.

The introduction of computerized patient information and medication orders is meant to reduce "adverse drug events" and ensure that the patient's history and treatment notes are available to everyone who needs them. But progress does not always equal safety. "Technology should remove the burden, but you can get problems. You can hide behind technology and spend more time talking to your computer than to your patients," says Dr. Albert Wu, a professor of medicine at Johns Hopkins. "And as with any new thing, people screw things up worse before they make things better." Doctors say there is a temptation to trust computers too much: they seem objective and infallible, but if the wrong information is entered in the first place, or the bar-coded wristband is put on the wrong patient, it can be harder to prevent mistakes down the line. In one case study, a patient with pneumonia had his wristband mixed up with a diabetic patient and came very close to being given a fatal dose of insulin.

This is why doctors are reluctant to be hands-off when it comes to a loved one's care. Until proper safeguards are built into the system, what a patient needs most, many doctors agree, is a sentinel — someone to take notice, be an advocate, ask questions. Now that the family doctor has been squeezed out of that role, someone else has to step in. But even a doctor — family member may not be able to counter the complexity of the system. Dr. Berwick of the Institute for Healthcare Improvement tells the story of his wife Ann's experience when she developed symptoms of a rare spinal-cord problem at a leading hospital. His concern was not just how she was treated; it was that so little of what happened to her was unusual. Despite his best efforts, tests were repeated unnecessarily, data were misread, information was misplaced. Things weren't just slipping through the cracks: the cracks were so big, there was no solid ground.

An attending neurologist said one drug should be started immediately, that "time is of the essence." That was on a Thursday morning at 10 a.m. The first dose was given 60 hours later, on Saturday night at 10 p.m. "Nothing I could do, nothing I did, nothing I could think of made any difference," Berwick said in a speech to colleagues. "It nearly drove me mad." One medication was discontinued by a physician's order on the first day of admission and yet was brought by a nurse every single evening for 14 days straight. "No day passed — not one — without a medication error," Berwick remembers. "Most weren't serious, but they scared us." Drugs that failed to help during one hospital admission were presented as a fresh, hopeful idea the next time. If that could happen to a doctor's wife in a top hospital, he says, "I wonder more than ever what the average must be like. The errors were not rare. They were the norm."

After he publicized his experiences, Berwick was besieged by other doctors saying, "If you think that's terrifying, wait until you hear my story." One distinguished professor of medicine whose wife was hospitalized in a great university hospital was too frightened to leave her bedside. "I felt that if I was not there, something awful would happen to her," he told Berwick. "I needed to defend her from the care."
It's hard to find a doctor who doesn't worry about how medicine is changing, since they suffer at both ends: as providers of health care and as consumers. "What scares me most about the current medical environment is complacency with the status quo," says Martin Palmeri, an internal medicine resident at Dartmouth-Hitchcock Medical Center in New Hampshire. Burgeoning bureaucracies, managed care, the mass production of health-care services and a worsening malpractice climate only strain the doctor-patient relationship. In this environment, the patient, typically a physician's source of inspiration, can become the source of frustration. "When I refer one of my family members to someone," Palmeri says, "I want to make sure that they are the type of physician who leaves no stone unturned and will burn the midnight oil if need be to ensure the highest-quality care possible."

What frightens doctors — young ones like Palmeri as well as older ones — is that those doctors may be harder and harder to find. Scientific knowledge improves, but the care doesn't keep up; it is easier to gather gigabytes of information than to acquire the judgment to apply it wisely. It might comfort the rest of us to think that with just a little more knowledge or a personal doctor at our side, we could get the best out of America's extraordinary health-care system without suffering from its gaps and failures. But since even an insider can suffer, we are left with the much harder challenge: to fix the system for everyone.

With reporting by Coco Masters/ New York
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