Bridging the Culture Gap - NYTimes.com

One afternoon not long after I finished my training, two sisters, both well-respected professionals in their late 40s, came to the hospital clinic. Both sisters had hepatitis B, and the older sister, like a fair number of chronic hepatitis B patients, had developed liver cancer. She and her sister were hoping that we might be able to remove the tumor.

I remember watching the sisters' faces turn grim as the younger of the two drew a family tree on the flimsy paper covering the examining table. Under each branch, she wrote out the names of siblings and parents, and I shuddered over the number of "L.C.'s," her abbreviation for "liver cancer," this sister scrawled next to a name.

Their parents had immigrated to the United States from China a half-century earlier. In the midst of raising six children, their mother developed and then died from inoperable liver cancer. A little over two decades later, two of their siblings succumbed to the same lethal disease — one brother a few months prior to the sisters' visit to my clinic, and another brother a few months later.

After the first brother had died, the family members assumed that his untimely death was due to bad luck or perhaps a "cancer gene." But soon after the second brother was diagnosed, the remaining siblings sifted through their family's medical records. They discovered that both brothers had had hepatitis B, a viral infection that predisposes individuals to cirrhosis, liver failure and cancer; and they realized that their mother's symptoms in the years prior to her death were consistent with progressive liver failure from cirrhosis.

They learned that while the incidence of hepatitis B is higher among Asians than among other racial groups in the United States, Chinese are at the highest risk, particularly those who hail from Fujian, the province from which the sisters' parents had immigrated. Infections could spread insidiously through "vertical transmission," where infected mothers would unknowingly pass the virus to their newborns during birth. The children then go on to develop a chronic active infection and are predisposed to developing early cirrhosis and liver cancer. If they were female, they run the risk of passing the virus on to a whole new generation of family members.

Over the course of the next few months, the surviving siblings learned that every one of them had been infected with hepatitis B, probably from their mother at birth. While each had developed varying degrees of cirrhosis, they realized that without the necessary close surveillance by a liver specialist, they could die from liver cancer as their brothers and mother had. The sisters spearheaded the effort to find liver specialists who would follow all of them, and it was during this search that they discovered the older sister's tumor and my clinic.

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http://www.nytimes.com/2009/07/16/health/16chen.html?em=&pagewanted=print

When doctors can't say 'no' - CNN.com

When singer Michael Jackson asked for the anesthetic, Diprivan, to help him get a good night's sleep, nurse practitioner Cherilyn Lee told CNN, she refused, telling the pop star that if he took the medicine, he might never wake up.

When Jackson asked Dr. Deepak Chopra for a narcotic, Chopra said he told Jackson absolutely no. "I said to him, 'Michael, you're going to die one day from this,'" Chopra told CNN in a recent interview.

But apparently other doctors had a very hard time saying "no" to Michael Jackson.

During a world tour in the mid-'90s, sources close to Jackson told CNN that the pop star suffered from insomnia and traveled with an anesthesiologist who would "take him down" at night and then "bring him back up." According to a report on a 2004 Santa Barbara police investigation, security guards in Jackson's inner circle said he traveled the country getting prescriptions from doctors.

"Michael's addiction was ultimately created by doctors," Chopra said.

Experts on doctor behavior said physicians often have a tough time saying no to requests from a patient -- even when the patient isn't a celebrity.

"There's constant pressure to say yes to things even when it's not in the patient's best interest," said Dr. Joseph Weiner, chief of consultation psychiatry at North Shore University Hospital in Manhasset, New York. "It's become an everyday dilemma."

For example, he said doctors sometimes say yes to demands for antibiotics even in cases of the common cold, or submit to demands for drugs advertised on television when that drug isn't the best choice. Sometimes, patients who are at the end of life ask for extensive tests and treatments, and doctors acquiesce even when they know death is imminent and unavoidable.

The situation has become so bad that doctors have written articles suggesting ways to refuse patients' requests tactfully. "We're often unready to say no to patients when they want a particular prescription or test, even if it is unwarranted," write physicians in the Permanente Journal. The article goes on to give advice on the art of saying "no."

Of course, money is sometimes a motive for appeasing patients, Weiner said. "You don't want to lose that patient. You figure if you don't do what they want, they'll go to someone else, so you don't want to say no," said Dr. Francesca Fusco, a cosmetic dermatologist in New York.

But there are more than just financial forces at work. Fusco said doctors go into medicine because they want to help people, and sometimes that good instinct goes bad. "We want to make patients happy," she said.

Sometimes time -- or lack of it -- is the culprit. "Doctors want to get the patient in and out in five minutes, so it's much easier to just write the prescription the patient asks for," Chopra said.

Another reason doctors say yes when they really want to say no has to do with the changing nature of the doctor-patient relationship.

"In the current environment in which patients are supposed to be treated like customers, there is sometimes the expectation that the customer is always right and should get whatever is asked for," said Dr. Danielle Ofri, assistant professor of medicine at New York University School of Medicine.

Ofri remembers once agreeing to a patient's request for drugs -- and regretting it. The patient asked her for a high dose of oxycodone for back pain. When she hesitated, he became upset and accused her of not believing him when he said his back hurt. With misgivings, Ofri gave him the prescription.

"For the rest of the day, I walked around with a terrible feeling in my stomach," Ofri said. "I really wished I'd said no."

The next day, the patient knocked on her door and handed her the prescription. "I lied to you," the patient told Ofri. "I'm very sorry, and I'm not sure what came over me, but I lied and I owe you an apology." Ofri said she was "stunned, but relieved."

The "just say no" problem is particularly evident in the world of cosmetic medicine, where patients often demand yet another face-lift, more Botox, or another injection of filler in their lips. Fusco said she tells her students at the Mount Sinai School of Medicine that when a patient's request is inappropriate, they need to take the time to explain why.

"Ninety-five percent of the time, patients will agree with me and not push for more," she said. "The other 5 percent I won't see again, but I'd rather not see them if they're walking down the street and their lips turn the corner before they do."

http://www.cnn.com/2009/HEALTH/07/16/jackson.doctors.say.no/index.html

For Gen Y woman with cancer risk, 'it's just a boob' - CNN.com

It's Saturday night. Three young women are dressed to the nines at a trendy bistro on Rush Street in downtown Chicago. They're having drinks outside on the kind of summer night that makes you fall in love with the city.

"They call this 'Viagra triangle,'" Lindsay Avner says, to peals of laughter.

On this night, these twentysomethings aren't thinking about flirting, though. They are thinking about issues most women their age don't: life insurance and freezing their eggs.

Tonight Avner is talking to two sisters from Dallas, Texas, about their imminent genetic testing to see whether they have the BRCA gene mutations that will predispose them to developing breast and ovarian cancer.

Avner, 26, knows what they're going through. She tested positive for the gene three years ago.

Women with the BRCA gene mutations have a 60 to 80 percent chance of developing breast cancer -- at least five times higher than the general population -- according to the American Cancer Society. Additionally, these women have up to a 60 percent chance of getting ovarian cancer in their lifetime.

"I know you're scared. It's a scary thing," Avner says. She has told her story dozens, even hundreds, of times but says she never tires of it.

"I'm trying to stay positive," says one of the sisters who recently found out that her dad carries the gene passed down from his mom, who had breast cancer. "I keep telling myself that it's better to know and be ready."

Women with the inherited mutations have an increased risk of developing these cancers at a young age, before menopause, and often have multiple close family members with the disease, according to the National Cancer Institute.

"The funny thing is that nothing in your body has changed the day you hear the results," Avner says, reflecting on the experience of hearing a positive test result. "You were either born with it or you weren't. You are just going armed with more knowledge."

That genetic knowledge convinced Avner to undergo a prophylactic double mastectomy when she was 23. The surgery involves removing as much of the at-risk tissue as possible, in order to reduce the chance of developing cancer. A year later she started an organization to educate young women about breast cancer and preventive health, Bright Pink.

"It's something our parents and grandparents didn't have available," Avner said. Every female member of the family, from aunts to her grandmother, died from the disease.

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http://www.cnn.com/2009/HEALTH/07/17/gen.y.breast.cancer/

Forty Years' War - In Push for Cancer Screening, Limited Benefits - Series - NYTimes.com

"Don't forget to check your neck," says an advertising campaign encouraging people to visit doctors for exams to detect thyroid cancer.

In another cancer awareness effort, Representative Debbie Wasserman Schultz, a Florida Democrat, has more than 350 House co-sponsors for her bill to promote the early detection of breast cancer in young women, teaching them about screening methods like self-exams and genetic testing.

Meanwhile, the foundation of the American Urological Association has a prostate cancer awareness campaign starring Hall of Fame football players. "Get screened," Len Dawson, a former Kansas City Chiefs quarterback, says in a public service television spot. "Don't let prostate cancer take you out of the game."

Nearly every body part susceptible to cancer now has an advocacy group, politician or athlete with a public awareness campaign to promote routine screening tests — even though it is well established that many of these exams offer little benefit for the general public.

An upshot of the decades-long war on cancer is the popular belief that healthy people should regularly examine their bodies or undergo screening because early detection saves lives. But in fact, except for a few types of cancer, routine screening has not been proven to reduce the death toll from cancer for people without specific symptoms or risk factors — like a breast lump or a family history of cancer — and could even lead to harm, many experts on health say.

That is why the continued rollout of screening campaigns, and even the introduction of a Congressional bill, worries some health experts. And these experts say such efforts add to the large number of expensive and unnecessary treatments each year that help drive up the nation's health care bill. Rather than heed mass-market calls for screening, these experts urge people without symptoms or special risks to talk to their own doctors about what cancer tests, if any, might be appropriate for them.

Blanket screenings do come with medical risks. A recent European study on prostate cancer screening indicated that saving one man's life from the disease would require screening about 1,400 men. But among those 1,400, 48 others would undergo treatments like surgery or radiation procedures that would not improve their health because the cancer was not life-threatening to begin with or because it was too far along. And those treatments could lead to complications including impotence, urinary incontinence and bowel problems.

Then there is the economic cost. There are no credible estimates for the amount that routine cancer screening contributes to the approximately $700 billion spent each year in this country on unneeded medical treatment of all types. But health policy experts say such screenings and the cascade of follow-up tests and treatments do play a role.

For example, Americans spend an estimated $4 billion annually on mammograms, according to Dr. David H. Newman, author of the book "Hippocrates' Shadow: Secrets from the House of Medicine." Some of those tests cause false alarms that lead to unnecessary follow-up surgery on normal breasts, at a cost of $14 billion to $70 billion over a decade, according to Dr. Newman, the director of clinical research in the department of emergency medicine at St. Luke's Roosevelt Hospital Center in Manhattan.

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http://www.nytimes.com/2009/07/17/health/17screening.html?_r=1&th=&emc=th&pagewanted=print

Why We Must Ration Health Care - NYTimes.com

Why We Must Ration Health Care

By PETER SINGER

You have advanced kidney cancer. It will kill you, probably in the next year or two. A drug called Sutent slows the spread of the cancer and may give you an extra six months, but at a cost of $54,000. Is a few more months worth that much?

If you can afford it, you probably would pay that much, or more, to live longer, even if your quality of life wasn't going to be good. But suppose it's not you with the cancer but a stranger covered by your health-insurance fund. If the insurer provides this man — and everyone else like him — with Sutent, your premiums will increase. Do you still think the drug is a good value? Suppose the treatment cost a million dollars. Would it be worth it then? Ten million? Is there any limit to how much you would want your insurer to pay for a drug that adds six months to someone's life? If there is any point at which you say, "No, an extra six months isn't worth that much," then you think that health care should be rationed.

In the current U.S. debate over health care reform, "rationing" has become a dirty word. Meeting last month with five governors, President Obama urged them to avoid using the term, apparently for fear of evoking the hostile response that sank the Clintons' attempt to achieve reform. In a Wall Street Journal op-ed published at the end of last year with the headline "Obama Will Ration Your Health Care," Sally Pipes, C.E.O. of the conservative Pacific Research Institute, described how in Britain the national health service does not pay for drugs that are regarded as not offering good value for money, and added, "Americans will not put up with such limits, nor will our elected representatives." And the Democratic chair of the Senate Finance Committee, Senator Max Baucus, told CNSNews in April, "There is no rationing of health care at all" in the proposed reform.

Remember the joke about the man who asks a woman if she would have sex with him for a million dollars? She reflects for a few moments and then answers that she would. "So," he says, "would you have sex with me for $50?" Indignantly, she exclaims, "What kind of a woman do you think I am?" He replies: "We've already established that. Now we're just haggling about the price." The man's response implies that if a woman will sell herself at any price, she is a prostitute. The way we regard rationing in health care seems to rest on a similar assumption, that it's immoral to apply monetary considerations to saving lives — but is that stance tenable?

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http://www.nytimes.com/2009/07/19/magazine/19healthcare-t.html?em=&pagewanted=print

Mortal Skin Race, genes, and cancer. William Saletan, Slate

Black people, on average, are more likely to die of cancer than white people. Is part of that difference genetic?

The Journal of the National Cancer Institute just published a big study on this question. If you haven't heard about the study, maybe that's because you get your news from television, National Public Radio, the Associated Press, or the New York Times, which have ignored it. Why would they ignore it? Because the study suggests the answer is yes. It's OK to report that racial differences in cancer outcomes are caused by poverty and discrimination. It's not OK to report that they're inherited.

The study, which tracked nearly 20,000 patients in a series of clinical trials, painstakingly accounted for environmental factors. It concluded that "African American patients with breast, prostate, or ovarian cancer … had statistically significantly worse overall survival than white patients," even though "all patients had uniform therapy and follow-up parameters, with adjustment for stage, socioeconomic factors, and known prognostic variables."

The authors reported "an increase in mortality … among African American women with ovarian cancer in our population who were treated uniformly on phase III clinical trials after adjustment for all available factors." A similar "disparity in survival was even observed in equal access care systems, such as Kaiser Permanente." Consistent with previous studies, "the disparity in prostate cancer survival persisted despite adjusting for income and education." In fact, in one previous study, "African American race was the only independent predictor of time to prostate-specific antigen progression, indicating that biological and genetic differences underlie this disparity."

In a search of Nexis, I can find only two American reporters who covered the study: Deborah Shelton of the Chicago Tribune and Rob Stein of the Washington Post. Stein reports:

Because all the cancers for which the disparity persisted were related to gender, the findings suggest that the survival gap may be the result of a complex interaction of differences in the biology of the tumors and inherited variations in genes that control metabolism of drugs and hormones, [Kathy Albain, the study's lead author] said. … "This is almost certainly related to a mix of factors across races pertaining to tumor biology and inherited factors," Albain said. … "What we are saying is that there is something that 'tracks' with African ancestry only in these three diseases."

In both articles, critics reject the study's findings or belittle them as a distraction from the real causes of racial differences in cancer outcomes. Steve Whitman, director of Chicago's Sinai Urban Health Institute, tells Shelton that the study failed to account for "residual social variables." He dismisses it as a rehash of the old notion that "the problem is not with society, not with social issues, it's not with racism, but with the biology that lies within black people." Otis Brawley, the American Cancer Society's chief medical officer, tells Stein, "When I hear scientists talking about racial differences, I worry that it starts to harken back to arguments about genetic inferiority." He insists that the gaps in cancer outcomes "are not due to inherent genetics. They are due to the effects of environmental factors like diet and exercise and obesity on biology."

I've heard vehement denials like these before. Two years ago, I wrote about the possible role of heredity in racial gaps on IQ tests. That earned me a wave of denunciation unlike anything I'd ever experienced. Some of the criticism was deserved, but much of it was an overreaction based on fear and misunderstanding. People are afraid that if we acknowledge genetic differences along racial lines, we'll become blind to discrimination and socioeconomic inequality, and we'll lay a scientific foundation for segregation. That isn't true.

Race is enormously complicated. As a scientific category, it's useful but crude. It sorts people not into separate groups but into overlapping clouds, defying predictions about individuals. It correlates to some extent with culture and economics but also to some extent with genes. Denying that race is real or that genes play a role in racial differences is just as simplistic as pretending that race explains everything or that discrimination has vanished.

If you really want to understand the relationship between race and cancer, don't read Brawley's comments to the Post. Read his nuanced editorial in the journal that published the study. He makes several important points. First, he notes that the study matches previous data:

Albain et al. found that black race was associated with increased mortality in patients with breast, ovarian, and prostate cancers, despite uniform stage, treatment, and follow-up. These results largely agree with the results of an analysis of clinical trials by Bach et al. in 2002, and it is noteworthy that the only racial differences in treatment outcome are from sex-related tumors.

Second, he points out that the racial discrepancies aren't binary. They're diffuse patterns in which groups overlap, though their averages differ:

In the United States, we frequently do a sort of racial medical profiling. We accept that our racial labels predict for groups of people less likely to do well with cancer and other diseases. … Taken together, the two studies and others do not suggest that blacks have a different kind of breast cancer but rather that there are multiple kinds of breast cancer and that a higher proportion of black patients with breast cancer have the worse kinds. No race has a monopoly on the good kind, nor the bad kind of breast cancer, but the prevalences differ.

Third, he explains that race is a rough, transitional category:

It is more scientific to think of race as a surrogate for area of geographic origin, socioeconomic status (SES), and culture, all of which can have correlations with disease risk. Area of geographic origin is a legitimate scientific categorization. There are genetic markers that have a higher prevalence in some populations as defined geographically. For example, the sickle cell mutation is found in sub-Saharan and North Africa, the Middle East, and the Mediterranean countries of Europe. Furthermore, pharmacogenetic studies demonstrate that certain drugs are less likely to work or more likely to cause side effects in populations from certain areas ...

Fourth, he reminds us that environmental factors contribute to unequal cancer outcomes:

A substantial body of work demonstrates that black-white disparities in most cancers are due to the fact that a large proportion of minority and poor patients receive less than optimal care when compared with nonminority patients. Studies suggest that for most cancers, equal treatment yields equal outcome among equal patients and there is not equal treatment.

Taken together, these points form the beginning of a sensible way to think about race. It's a fluid category. It can be economic, cultural, and genetic. It can be salient but also coarse. Analytically, it's a primitive tool. Can it tell us useful things? Yes. Should we use it? Yes, but judiciously. In the case of cognitive ability, it probably does more harm than good. But in the case of drug reactions or cancer, lives are at stake.

Our responsibility is to use this tool wisely and, at the same time, begin to replace it with more sophisticated models of interacting dynamics—economics, culture, genetics—that more accurately fit the data. If we succeed, tomorrow's doctors won't have to guess your prognosis from your race. They'll have your genome and plenty of other biological information about you, much of it inherited. And they won't have to pretend it doesn't matter.

http://www.slate.com/toolbar.aspx?action=print&id=2222813

Discussion Grows Over Hospital Readmissions

Hospital patients who are readmitted soon after their discharge are at the center of a push by lawmakers looking for health care savings and streamlined patient care.

Many regulators see readmissions, also known as rehospitalizations, as a relatively easy target for reform. However, hospital leaders stress that real improvement would require sweeping changes in care delivery and coordination, payment methodologies, and even the formula used for defining and evaluating readmissions.

"It is not something that can be turned on like a switch," said Ruben Amarasingham, M.D., M.B.A., associate chief of medicine at Parkland Health and Hospital System and assistant professor of medicine at the University of Texas Southwestern Medical Center at Dallas. "You really have to optimize every aspect of inpatient care, the patient transition as they are preparing for discharge, and the care they receive after discharge. And on top of that, the patient must also be involved in learning what he or she needs to do not to return to the hospital. There has to be a systemic, methodical approach."

An April report in the New England Journal of Medicine found that almost 20 percent of the nearly 12 million Medicare beneficiaries who had been discharged from a hospital between 2003 and 2004 were rehospitalized within 30 days, and 34 percent were rehospitalized within 90 days. Unplanned hospital readmissions cost Medicare $17.4 billion during that time frame, according to the study. A 2007 report by the Medicare Payment Advisory Commission (MedPAC) found that Medicare paid an average of $7,200 dollars per readmission deemed potentially preventable.

Beginning this month, the Centers for Medicare and Medicaid Services (CMS) is posting on its Hospital Compare Web site the readmission rates for Medicare patients who are readmitted within 30 days of the original admission date due to heart failure, heart attack, or pneumonia.

Readmissions reform could be particularly important to teaching hospitals, which tend to admit—and readmit— patients with severe and chronic conditions. According to a recent University HealthSystem Consortium analysis of approximately 100 members of the AAMC's Council of Teaching Hospital and Health Systems, Medicare patients with a higher severity of illness have higher readmission rates—as high as 22 percent within 30 days for the most severe cases.

Meanwhile, President Barack Obama's fiscal 2010 budget calls for $26 billion in savings from readmissions over 10 years, and MedPAC and the Congressional Budget Office have suggested payment reductions for hospitals with high readmission rates. Congress also is interested in readmission payment policy. In late April, the Senate Finance Committee released a paper on reducing Medicare costs that included a readmission payment policy. New policies could reduce payments to hospitals with high, risk-adjusted readmission rates for "potentially preventable" conditions.

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http://www.aamc.org/newsroom/reporter/june09/readmits.htm

Medicine : Adventures in Ethics and Science

This is the blog where I muse on responsible conduct of scientific research, communication between scientists and non-scientists about the issues that matter to both camps, and teaching science and ethics. It may seem like most of the discussion is about irresponsible conduct, miscommunication, and teaching that doesn't get the job done. I criticize because I know we can do better.

My opinions about these issues are informed by my training as a philosopher of science, but even more by my training as a scientist. (I earned a Ph.D. in physical chemistry, but I've also worked in labs with biomedical emphases.) You know, the crucible of graduate school, yadda yadda. It goes without saying that the opinions I express here are not necessarily those of ScienceBlogs or of San Jose State University.

http://scienceblogs.com/ethicsandscience/medicine/

B. C. couple gets $5M in malpractice ruling

A B. C. couple has been awarded more than $5-million in a medical malpractice case, after the husband, a young teacher, was left crippled because he failed to follow up on test results.

In 1999, Shawn Kahlon sought help from his doctor to remedy lingering lower back pain. The physician ordered a CT scan, and the radiologist, who saw some abnormalities in the results, wanted Mr. Kahlon to return for a follow up scan with contrast dye.

But Mr. Kahlon, a 32-year-old teacher at the time, never returned -- which had devastating consequences because Mr. Kahlon had spinal tuberculosis that was about to migrate to his brain. The disease left him completely incapacitated, paralyzed on one side of his body and requiring full-time care.

The first set of films from the CT scan were filed by a clerk before being fully reported and weren't found until a year later when Mr. Kahlon was rushed to Vancouver General Hospital where he was finally diagnosed.

It is unknown if Mr. Kahlon was told he should come back for another checkup, as his cognitive impairments prevented him from testifying at the the four-week B. C. Supreme Court trial. His family doctor also was unable to shed light on the question, as he died last year from pancreatic cancer.

A note found in his file, however, suggests that Mr. Kahlon was hesitant about undergoing a test with dye.

In a 135-page decision yesterday, Justice Jon Sigurdson found the Vancouver Coastal Health Authority and UBC Hospital 70% responsible, and Mr. Kahlon himself 30% at fault.

"Had the films been reported on at the time of the CT scan or within the several months following, it would have led to a chain of inquiry which would have resulted in diagnosis of spinal TB meningitis. Treatment would have been given and Mr. Kahlon would have recovered without consequence," said Judge Sigurdson.

Mr. Kahlon shared in the liability because he was told that he needed a follow up test but he failed to go.

"Why did he procrastinate? Perhaps because this occurred at a busy time in Mr. Kahlon's life. He was about to marry and was also presumably busy with his teaching career," Judge Sigurdson wrote. "There is a duty on the part of the patient to participate fully and honestly in his own health care."

http://www.nationalpost.com/news/canada/story.html?id=1772560

Look for abuse injuries, urge bone specialists

The leaders of Canada's orthopedic surgeons are urging the specialists to seek out and help women whose injuries were caused by abuse, citing a recent study that concluded surprising numbers of female fracture patients are victims of domestic assault.

The doctors who fix broken bones and dislocated limbs are ideally positioned to identify partner-battery cases, yet rarely think about the problem, says the Hamilton, Ont., surgeon who spearheaded the initiative -- one that raises concerns over patient confidentiality and received a muted response from medical journals.

A new, four-page statement just approved by the Canadian Orthopedic Association suggests that the surgeons consider it "good medical practice" to try to identify and offer aid to victims.

Dr. Mohit Bhandari of Hamilton's McMaster University said audience members at a recent association conference were taken aback when he explained that they are likely seeing many abuse victims a year without knowing it.

"They were a little bit surprised, if not shocked," said

Dr. Bhandari, who holds the Canada research chair in muskuloskeletal trauma.

"I think there is almost a sense of embarrassment -- 'I can't believe that we've been letting this go on.' But I truly believe it was not deliberate. It was a personal perception: They just didn't see it."

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http://www.nationalpost.com/news/canada/story.html?id=1772562