Thursday, November 21, 2013

How Doctors Die - Showing Others the Way -

Brave. You hear that word a lot when people are sick. It's all about the fight, the survival instinct, the courage. But when Dr. Elizabeth D. McKinley's family and friends talk about bravery, it is not so much about the way Dr. McKinley, a 53-year-old internist from Cleveland, battled breast cancer for 17 years. It is about the courage she has shown in doing something so few of us are able to do: stop fighting.

This spring, after Dr. McKinley's cancer found its way into her liver and lungs and the tissue surrounding her brain, she was told she had two options.

"You can put chemotherapy directly into your brain, or total brain radiation," she recalled recently from her home in suburban Cleveland. "I'm looking at these drugs head-on and either one would change me significantly. I didn't want that." She also did not want to endure the side effects of radiation.

What Dr. McKinley wanted was time with her husband, a radiologist, and their two college-age children, and another summer to soak her feet in the Atlantic Ocean. But most of all, she wanted "a little more time being me and not being somebody else." So, she turned down more treatment and began hospice care, the point at which the medical fight to extend life gives way to creating the best quality of life for the time that is left.

Dr. Robert Gilkeson, Dr. McKinley's husband, remembers his mother-in-law, Alice McKinley, being unable to comprehend her daughter's decision. " 'Isn't there some treatment we could do here?' she pleaded with me," he recalled. "I almost had to bite my tongue, so I didn't say, 'Do you have any idea how much disease your daughter has?' " Dr. McKinley and her husband were looking at her disease as doctors, who know the limits of medicine; her mother was looking at her daughter's cancer as a mother, clinging to the promise of medicine as limitless.

When it comes to dying, doctors, of course, are ultimately no different from the rest of us. And their emotional and physical struggles are surely every bit as wrenching. But they have a clear advantage over many of us. They have seen death up close. They understand their choices, and they have access to the best that medicine has to offer.

"You have a lot of knowledge, a lot of awareness of what's likely to come," said Dr. J. Andrew Billings from his home in Cambridge, Mass.

Dr. Billings, 68 and semi-retired, is an expert in palliative care, which can include managing pain, emotional support and end-of-life planning. He is also a cancer patient with a life-threatening form of lymphoma. Dr. Billings said that knowledge of what may be ahead can give doctors more control over their quality of life before they die — control that eludes many of us.

Research shows that most Americans do not die well, which is to say they do not die the way they say they want to — at home, surrounded by the people who love them. According to data from Medicare, only a third of patients die this way. More than 50 percent spend their final days in hospitals, often in intensive care units, tethered to machines and feeding tubes, or in nursing homes.

There is no statistical proof that doctors enjoy a better quality of life before death than the rest of us. But research indicates they are better planners. An often-cited study, published in 2003, of physicians who had been medical students at Johns Hopkins University found that they were more likely than the general public to have created advance directives, or living wills, which lay out specific plans for care if a patient is unable to make decisions. Of the 765 doctors studied, 64 percent had advanced directives, compared with about 47 percent for American adults over 40.

Patients and families often pay a high price for difficult and unscripted deaths, psychologically and economically. The Dartmouth Atlas Project, which gathers and analyzes health care data, found that 17 percent of Medicare's $550 billion annual budget is spent on patients' last six months of life.

"We haven't bent the cost curve on end-of-life care," said Dr. David C. Goodman, a senior researcher for the project.

The amount spent in the intensive care unit is climbing. Between 2007 and 2010, Medicare spending on patients in the last two years of life jumped 13 percent, to nearly $70,000 per patient.

The evidence is clear, Dr. Goodman said, that things could change if doctors "respect patient preferences and provide fair information about their prognosis and treatment choices."

Sometimes that can be easier said than done, even for doctors. One day last month, as he sat through the first of several hours of chemotherapy at the Dana-Farber Cancer Institute in Boston, Dr. Billings said he had looked at statistical survival curves for his form of lymphoma.

"There are some dots that are very, very soon, and there are some dots that are a long ways off, and I hope I'm one of those distant dots," he said.

Dr. Billings knows how important it is to have that information. As a palliative care doctor, he has spent a lifetime helping people plan their final days. Also, he is married to a prominent palliative care doctor, Dr. Susan D. Block.

"As a doctor you know how to ask for things," he said. But as a patient, Dr. Billings said he had learned how difficult it can be to push for all the information needed. "It's hard to ask those questions," he said. "It's hard to get answers."

There is a reason for that. In his book "Death Foretold," Nicholas A. Christakis, a Yale sociologist, writes that few physicians even offer patients a prognosis, and when they do, they do not do a great job. Predictions, he argues, are often overly optimistic, with doctors being accurate just 20 percent of the time.

But without some basic understanding of the road ahead, Dr. Anthony L. Back, a University of Washington professor and palliative care specialist, said even sophisticated patients could end up where they least want to be: the I.C.U. "They haven't realized the implications of saying: 'Yeah, I'll have that one more treatment. Yeah, I'll have that chemotherapy,' " Dr. Back said.

In Raleigh, N.C., Dr. Kenneth D. Zeitler has practiced oncology for 30 years. The son of a doctor and the father of two doctors, he learned 18 years ago that he had a brain tumor, which was removed. When the tumor recurred in 2004, he took the conservative route and decided against an operation — the risk of paralysis was too great. Dr. Zeitler, his wife and their two children mapped out a clear medical path, or so they thought.

Then in June, he woke up with the left half of his body paralyzed, after a low-risk biopsy caused a hemorrhage in his brain. "As a physician myself, when treating patients, I listened to this inner voice," he said, but now he was mad at himself. "Instead of just saying 'No, I won't do this biopsy,' I didn't follow my instincts."

Dr. Zeitler realized after his biopsy that saying no can mean more than turning down a procedure. It can mean dealing with something much harder: his family's expectations that he will do whatever it takes to live and remain with them.

As transparent as Dr. Zeitler was with his family about his clinical care, he had walled off his deepest fears about losing pleasure in his daily life. He has since regained most physical functions and says he has had another chance to talk to his family. "As much as they'll cry about me at every bar mitzvah and every wedding, I don't want to be there if I'm just completely miserable psychologically and physically," he said. "I've seen that. I don't need that."

Dr. Joan Teno, an internist and a professor of medicine at Brown University, says that often, even families like the Zeitlers, avoid the difficult conversations they need to have together and with doctors about the emotional side of dying.

"We pay for another day in I.C.U.," she said. "But we don't pay for people to understand what their goals and values are. We don't pay doctors to help patients think about their goals and values and then develop a plan."

But the end-of-life choices Americans make are slowly shifting. Medicare figures show that fewer people are dying in the hospital — nearly a 10 percent dip in the last decade — and that there has been a modest increase in hospice care. At the same time, palliative care is being embraced on a broad scale, with most large hospitals offering services.

The Affordable Care Act could accelerate those trends. Ezekiel Emanuel, the former White House health policy adviser, has said he believes that new penalties for hospital readmissions under the law could improve end-of-life care, making it more likely "we make the patient's passage much more comfortable and out of the hospital."

Culturally there is movement too. For example,, a website to help people hold end-of-life discussions, was started in August. The project's founder, Michael Hebb, said more than 1,000 dinner parties had been held, including some at nursing homes.

The front door at Dr. McKinley's big house was wide open recently. Friends and caregivers came and went. Her hospice bed sat in the living room. Since she stopped treatment, she was spending her time writing, being with her family, gazing at her plants. Dr. McKinley knew she was going to die, and she knew how she wanted it to go.

"It's not a decision I would change," Dr. McKinley said. "If you asked me 700 times I wouldn't change it, because it is the right one for me."

Dr. McKinley died Nov. 9, at home, where she wanted to be.

Tuesday, November 19, 2013

Health-Care Apps for Smartphones -

Cardiologist Eric Topol says he knew medicine had reached a turning point when patients started emailing him the results of do-it-yourself electrocardiograms.

With the help of a smartphone, a software application and a portable device that reads a person's heart rhythm, anyone can get an instant EKG reading on their phone screen.

"I am getting emails from people saying, 'I'm in atrial fibrillation—what do I do?' " Dr. Topol says, referring to a type of irregular heartbeat. "Whoa! The first time I saw that in the subject line of an email, I said, the world has really changed."

Mobile apps for smartphones and tablets are changing the way doctors and patients approach health care. Many are designed for the doctors themselves, ranging from handy databases about drugs and diseases to sophisticated monitors that read a person's blood pressure, glucose levels or asthma symptoms. Others are for the patients—at their doctor's recommendation—to gather diagnostic data, for example, or simply to help coordinate care, giving patients an easy way to keep track of their conditions and treatments.

Doctors say many of the apps are useful time savers, and have the potential to make health care more efficient by speeding diagnosis, improving patient monitoring and reducing unnecessary visits to a physician or hospital. Still, the field has a way to go, doctors add, particularly when it comes to making good use of all the patient data being generated.

Here are some of the apps doctors are talking about most. Some are free; others cost several hundred dollars for a year's subscription. Those that combine an app and a wireless monitor cost from $80 to $200.

More ...

The Biggest Mistake Doctors Make -

A patient with abdominal pain dies from a ruptured appendix after a doctor fails to do a complete physical exam. A biopsy comes back positive for prostate cancer, but no one follows up when the lab result gets misplaced. A child's fever and rash are diagnosed as a viral illness, but they turn out to be a much more serious case of bacterial meningitis.

Such devastating errors lead to permanent damage or death for as many as 160,000 patients each year, according to researchers at Johns Hopkins University. Not only are diagnostic problems more common than other medical mistakes—and more likely to harm patients—but they're also the leading cause of malpractice claims, accounting for 35% of nearly $39 billion in payouts in the U.S. from 1986 to 2010, measured in 2011 dollars, according to Johns Hopkins.

The good news is that diagnostic errors are more likely to be preventable than other medical mistakes. And now health-care providers are turning to a number of innovative strategies to fix the complex web of errors, biases and oversights that stymie the quest for the right diagnosis.

Part of the solution is automation—using computers to sift through medical records to look for potential bad calls, or to prompt doctors to follow up on red-flag test results. Another component is devices and tests that help doctors identify diseases and conditions more accurately, and online services that give doctors suggestions when they aren't sure what they're dealing with.

"Diagnostic error is probably the biggest patient-safety issue we face in health care, and it is finally getting on the radar of the patient quality and safety movement," says Mark Graber, a longtime Veterans Administration physician and a fellow at the nonprofit research group RTI International.Finally, there's a push to change the very culture of medicine. Doctors are being trained not to latch onto one diagnosis and stick with it no matter what. Instead, they're being taught to keep an open mind when confronted with conflicting evidence and opinion.

The effort will get a big boost under the new health-care law, which requires multiple providers to coordinate care—and help prevent key information like test results from slipping through the cracks and make sure that patients follow through with referrals to specialists.

There are other large-scale efforts in the works. The Institute of Medicine, a federal advisory body, has agreed to undertake a $1 million study of the impact of diagnostic errors on health care in the U.S.

In addition, the Society to Improve Diagnosis in Medicine, which Dr. Graber founded two years ago, is working with health-care accreditation groups and safety organizations to develop methods to identify and measure diagnostic errors, which often aren't revealed unless there is a lawsuit. In addition, it's developing a medical-school curriculum to help trainees improve diagnostic skills and assess their competency.

Robert Wachter, associate chairman of the department of medicine at the University of California, San Francisco, says defining and measuring diagnostic errors is an important step. "Right now, none of the incentives for improvement in health care are based on whether the doctor made the correct diagnosis," Dr. Wachter says. But equally important, he adds, "we need to nurture bottom-up innovation."

That's already happening. Large health-care systems are mining their electronic records for missed signals. At the Southern California Permanente Medical Group, part of managed-care giant Kaiser Permanente, a "Safety Net" program periodically surveys its database of 3.6 million members to catch lab results and other data that might fall through the cracks.

In one of the first uses of the system, a case manager reviewed 8,076 patients with abnormal PSA test results for prostate cancer, and more than 2,200 patients had follow-up biopsies. From 2006 to 2009, 745 cancers were diagnosed among those patients—and Kaiser had no malpractice claims related to missed PSA tests.

The program is also being used to find patients with undiagnosed kidney disease, which is often found via an abnormal test result for creatinine, which should be repeated within 90 days. From 2007 to 2012, the system found 7,218 lab orders placed for patients with an abnormal test that had not been repeated. Of those, 3,465 were repeated within 90 days of a notice to patients that they needed a repeat test, and 1,768 showed abnormal results. The majority, 1,624, turned out to be new cases of the disease.

Michael Kanter, regional medical director of quality and clinical analysis, says the system enables clinicians to go back "as far as is feasible to find all of the errors that we can and fix them."

Because the disease is slow moving, Dr. Kanter says, people with a five-year-old undiagnosed case may not have been harmed. Likewise, with many early prostate cancers, "in many of these cases it doesn't mean harm would have reached the patient," he says. "But we don't want patients not to have the information they should have had through some kind of lapse in the system."

Dealing With the Flood
Electronic records aren't a panacea, of course, and can even lead to information overload. In a survey of Veterans Administration primary-care practitioners reported last March in JAMA Internal Medicine, more than two-thirds reported receiving more patient-care-related alerts than they could effectively manage—making it possible for them to miss abnormal test results.

Some researchers suggest the best solution isn't to flood doctors with information but to provide a second set of eyes to find things they may have missed.

The focus now is preventing dangerous delays in follow-ups of abnormal test results. In a pilot program, researchers at the Houston VA developed "trigger" queries—a set of rules—to electronically identify medical records of patients with potential delays in prostate and colorectal cancer evaluation and diagnosis. Records included charts that had no documented follow-up for abnormal findings suspicious for cancer after a certain period, according to the research team's leader, Hardeep Singh, chief of health policy and quality at Michael E. DeBakey VA Medical Center in Houston and an assistant professor of medicine at Baylor College of Medicine.

The queries were run on nearly 600,000 records of patients seen at one VA facility in 2009 and 2010. Dr. Singh says the use of triggers, which helped find abnormal PSA tests and positive fecal occult blood tests, could detect an estimated 1,048 instances of delayed or missed follow-up of abnormal findings annually and 47 high-grade cancers.

The VA has funded a randomized trial to test whether an automated surveillance system of triggers can improve timely diagnosis and follow-up for five common cancers.

"This program is like finding needles in a haystack, and we use information technology to make the haystack smaller and smaller so it's easier to find the needles," Dr. Singh says.

More health-care systems are also turning to electronic decision-support programs that help doctors rank possible diagnoses by likelihood based on symptoms and notes in the medical record. In a study of one such system, called Isabel, researchers led by Dr. Graber found that it provided the correct diagnosis 96% of the time when key clinical features from 50 challenging cases reported in the New England Journal of Medicine were entered into the system. The American Board of Internal Medicine is studying how Isabel could be linked to assessments of physician skill and knowledge.

Another system, DXplain, developed at Massachusetts General Hospital in Boston, was shown in a study last year to significantly improve diagnostic accuracy among first-year medical residents.

Edward Hoffer, associate clinical professor at Harvard and senior computer scientist at Mass General who leads the DXplain program, says the aim now is to have DXplain "push" diagnostic suggestions to physicians through an electronic-medical-records system rather than requiring doctors to initiate a query, which some are still reluctant to do. "We have to focus our attention on dealing with situations where doctors think they know what the diagnosis is, but they don't," Dr. Hoffer says.

Other Avenues
New devices also hold promise for confirming a diagnosis and avoiding unnecessary tests. A number of companies are rushing to provide aids such as portable diagnostic equipment and lab tests that can analyze tiny samples of blood and other bodily fluids quickly to detect disease.

Consider MelaFind, which came to market in the U.S. in 2011. The device allows dermatologists to noninvasively examine moles as deep as 2.5 millimeters beneath the surface to gauge the level of "disorganization," an indicator of irregular growth patterns that are a sign of melanoma, among the deadliest cancers.

New York dermatologist Macrene Alexiades-Armenakas says she uses MelaFind to confirm that a mole is to be removed and prioritize the level of disorganization in multiple abnormal moles. In some cases, when another doctor or the patient has been concerned about a mole, MelaFind supported "clinical diagnosis of a benign mole, thereby sparing them a biopsy," she says.

But such devices will never replace a thorough physical exam with a trained eye and careful follow-up, says Dr. Alexiades-Armenakas: "These diagnostic tools are aids to increase our accuracy and adjuncts to good physical diagnosis, not a substitute."

Some efforts to cut down on errors take a different route altogether—and try to improve diagnoses by improving communication.

For instance, there's a push to get patients more engaged in the diagnostic process, by encouraging them to speak up about their symptoms and ask the doctor, "What else could this be?" At Kaiser Permanente, a pilot program provides patients with a pamphlet that encourages them to think about and write down their symptoms and what concerns or fears they have, encouraging them to ask specific questions to be sure they understand their diagnosis and the next steps they must take.

Medical schools, meanwhile, are teaching doctors to be more receptive to patient input and avoid "anchoring," the habit of focusing on one diagnosis and excluding other possible scenarios, and "premature closure," not even considering the correct diagnosis as a possibility.

The Critical Thinking program at Dalhousie University in Halifax, Nova Scotia, established last year, aims to help trainees step back and examine how biases may affect their thinking. Developed by Pat Croskerry, a physician known for his research on the role of cognitive error in diagnosis, it uses a list of 50 different types of bias that may lead to diagnostic error.

The program is being integrated throughout four years of the medical school. Students study cases such as a psychiatric patient with shortness of breath who was assumed to be merely having an anxiety attack; doctors overlooked that she was a smoker on birth-control pills, a risk for the blood clot that later traveled to her lung and killed her.

"If we can teach physicians how to think more critically," Dr. Croskerry says, "they would be more effective in delivering good care and arriving at the right diagnosis."

Sunday, November 17, 2013

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