The Shame of Low Health Literacy - NYTimes.com

Mr. M was a typical new patient: 74, with diabetes, hypertension and elevated cholesterol. He had some prostate enlargement and back pain. His bag of pill bottles was depressingly bulky. I spilled the bottles out at our first visit, sorting them by disease.

A thick shock of white hair spilled over most of his forehead, framing skin that was weathered from a lifetime of outdoor work — farming as a teenager in Mexico, construction as an adult here in the United States. His smile was bracketed by concentric rings of creases. Mr. M didn't remember the names of all the medicines, but he did know that the white pill was for "pressure" and that there were two pills for diabetes. Something also for cholesterol and prostate.

The visit took nearly an hour as I painstakingly explained each medication, matching the names on the bottles to the pill inside and the disease it was intended for. I cleaned up his medication list in the computer, purging expired or redundant meds and then printed the list for him to take home —clear, organized and, most important, legible.

Despite running over our scheduled time, I felt gratified that I'd brought some clarity to my new patient's medical conditions. Plus I was meeting one of the patient-safety goals mandated by our hospital.

At our next visit, I plucked out the bottle of lisinopril, the one new medication we'd started last time. "How does the new blood pressure pill feel?" I asked.

"Is that the one I take twice a day?" Mr. M asked.

"No, it's once a day," I said, pointing to the label. "The metformin for diabetes is the one you take twice a day."

He unscrewed the top of the next bottle and peered in. "I take these before breakfast."

I reached for the bottle and squinted at the label. "This is the one for your cholesterol. You have to take it at bedtime."

Mr. M was clearly still confused about his medicines, a not uncommon occurrence in this age of poly-pharmacy. Patients routinely juggle 7 to 10 medications, many of which change at each visit.

And a low level of health literacy, which the national report Healthy People 2010 defines as "the capacity to obtain, process and understand the basic health information and services needed to make appropriate health decisions," is surprisingly common among older adults. It is especially common in those who have the most diseases and the fewest resources.

For the next few visits, I spent all our time assiduously reviewing his pills and medication list. I referred him to an eye doctor to ensure that the diabetes was not affecting his vision. I arranged for a weekly visiting nurse to help him prepare a week's worth of medications in a pillbox.

In short, I did all the things that are recommended to assist a patient with low health literacy.

It was a year into our relationship when Mr. M finally told me the truth. I was typing up yet another beautifully manicured medication list to help keep him organized.

"Doctor," he said, his voice faltering, "you don't have to keep giving me those lists." He looked down at his lap for a moment. "The truth is that I can't read. Not in English, not in Spanish. Nothing at all."

Despite knowing that true illiteracy exists, I was still shocked to come upon it in real life. No wonder Mr. M couldn't keep his medications straight. He smiled faintly, then shrugged.

I recalled my travels to countries where I didn't speak the language; I'd felt so handicapped. To imagine that situation complicated by illness was frankly terrifying.

Watching Mr. M fumble with his bottles, unsure which pill was twice a day, which once, unnerved me, as I envisioned mix-ups and overdoses. That he'd succeeded this far was a testament to his resourcefulness and perseverance. But I worried about his future, his ability to juggle multiple chronic illnesses and to navigate a complex medical world.

Most patients don't offer up that they have low health literacy – let alone the fact that they can't actually read. Many expend great effort to compensate or hide it. Nevertheless, it is a powerful detriment to good health, and we in the medical world need to be on the lookout for it.

Mr. M and I opened up his pill bottles. We extracted a pill from each and taped it onto a piece of paper. I drew a sun next to the ones that needed to be taken in the morning, and a moon next to the ones for nighttime. He left my office with sheet of brightly colored pills, a rainbowlike guide that I hoped would offer him access to the quality medical care he surely deserved.

My kindergarten-age daughter is just beginning to read, and she is taken aback with delirious joy each time a few random letters suddenly form a word that matches real life. It's a painstaking process for her, but as I watch her I think about how this skill has powerful ramifications for her health and longevity. It's a gift, really, one that I'd long to transfer to Mr. M if I could.

http://well.blogs.nytimes.com/2011/07/07/a-problem-in-following-doctors-orders/?

An intimate story about the American struggle with communication and preparation at the end-of-life | Consider the Conversation

Motivated by their personal experiences with loss, Mike Bernhagen, Director of Community Engagement & Care Partner Relations at Rainbow Hospice Care of Jefferson, WI, and Terry Kaldhusdal, an Oconomowoc, WI teacher and filmmaker, decided to join forces in early 2009 to begin a creative journey that has resulted in a film entitled Consider the Conversation. This project sheds light on the 21st century American struggle with communication and preparation at the end-of-life. Throughout the film, there are intimate accounts of the emotional, spiritual, physical and social burdens associated with the historical shift that has occurred with dying. Forty years ago, most people experienced a quick death, but today we are more likely to suffer a slow, incremental dying process.

Consider the Conversation examines multiple perspectives on end-of-life care and includes information and experiences gathered from interviews with patients, family members, doctors, nurses, clergy, social workers, and national experts from around the country. While in production, Mike and Terry donated more than 3,500 hours to the effort which included shooting 70 hours of film and conducting in-depth interviews with 40+ individuals from California, Illinois, Indiana, New Hampshire, Massachusetts, New York, Vermont and Wisconsin. The film begins with "person on the street" interviews conducted in New York City.

More ...

http://www.considertheconversation.org/

How a New Hope in Cancer Fell Apart - NYTimes.com

When Juliet Jacobs found out she had lung cancer, she was terrified, but realized that her hope lay in getting the best treatment medicine could offer. So she got a second opinion, then a third. In February of 2010, she ended up at Duke University, where she entered a research study whose promise seemed stunning.

Doctors would assess her tumor cells, looking for gene patterns that would determine which drugs would best attack her particular cancer. She would not waste precious time with ineffective drugs or trial-and-error treatment. The Duke program — considered a breakthrough at the time — was the first fruit of the new genomics, a way of letting a cancer cell's own genes reveal the cancer's weaknesses.

But the research at Duke turned out to be wrong. Its gene-based tests proved worthless, and the research behind them was discredited. Ms. Jacobs died a few months after treatment, and her husband and other patients' relatives are suing Duke.

The episode is a stark illustration of serious problems in a field in which the medical community has placed great hope: using patterns from large groups of genes or other molecules to improve the detection and treatment of cancer. Companies have been formed and products have been introduced that claim to use genetics in this way, but assertions have turned out to be unfounded. And while researchers agree there is great promise in this science, it has yet to yield many reliable methods for diagnosing cancer or identifying the best treatment.

Instead, as patients and their doctors try to make critical decisions about serious illnesses, they may be getting worthless information that is based on bad science. The scientific world is concerned enough that two prominent groups, the National Cancer Institute and the Institute of Medicine, have begun examining the Duke case; they hope to find new ways to evaluate claims based on emerging and complex analyses of patterns of genes and other molecules.

So far, the Food and Drug Administration "has generally not enforced" its regulation of tests created by individual labs because, until recently, such tests were relatively simple and relied heavily on the expertise of a particular doctor, said Erica Jefferson, a spokeswoman for the agency. But now, with labs offering more complex tests on a large scale, the F.D.A. is taking a new look at enforcement.

Dr. Scott Ramsey, director of cancer outcomes research at the Fred Hutchison Cancer Center in Seattle, says there is already "a mini-gold rush" of companies trying to market tests based on the new techniques, at a time when good science has not caught up with the financial push. "That's the scariest part of all," Dr. Ramsey said.

Doctors say the heart of the problem is the intricacy of the analyses in this emerging field and the difficulty in finding errors. Even well-respected scientists often "oversee a machine they do not understand and cannot supervise directly" because each segment of the research requires different areas of expertise, said Dr. Lajos Pusztai, a breast cancerresearcher at M. D. Anderson Cancer Center at the University of Texas. As a senior scientist, he added, "It's true for me, too."

The Duke case came right after two other claims that gave medical researchers pause. Like the Duke case, they used complex analyses to detect patterns of genes or cell proteins. But these were tests that were supposed to find ovarian cancer in patients' blood. One, OvaSure, was developed by a Yale scientist, Dr. Gil G. Mor, licensed by the university and sold to patients before it was found to be useless.

The other, OvaCheck, was developed by a company, Correlogic, with contributions from scientists from the National Cancer Institute and the Food and Drug Administration. Major commercial labs licensed it and were about to start using it before two statisticians from M. D. Anderson discovered and publicized its faults.

The Duke saga began when a prestigious journal, Nature Medicine, published a paper on Nov. 6, 2006, by Dr. Anil Potti, a cancer researcher at Duke University Medical Center; Joseph R. Nevins, a senior scientist there; and their colleagues. They wrote about genomic tests they developed that looked at the molecular traits of a cancerous tumor and figured out which chemotherapy would work best.

Other groups of cancer researchers had been trying to do the same thing.

"Our group was despondent to get beaten out," said Dr. John Minna, a lung cancer researcher at the University of Texas Southwestern Medical Center. But Dr. Minna rallied; at the very least, he thought, he would make use of this incredible discovery to select drugs for lung cancer patients.

First, though, he asked two statisticians at M. D. Anderson, Keith Baggerly and Kevin Coombes, to check the work. Several other doctors approached them with the same request.

Dr. Baggerly and Dr. Coombes found errors almost immediately. Some seemed careless — moving a row or a column over by one in a giant spreadsheet — while others seemed inexplicable. The Duke team shrugged them off as "clerical errors."

And the Duke researchers continued to publish papers on their genomic signatures in prestigious journals. Meanwhile, they started three trials using the work to decide which drugs to give patients.

Dr. Baggerly and Dr. Coombes tried to sound an alarm. They got the attention of the National Cancer Institute, whose own investigators wanted to use the Duke system in a clinical trial but were dissuaded by the criticisms. Finally, they published their analysis in The Annals of Applied Statistics, a journal that medical scientists rarely read.

The situation finally grabbed the cancer world's attention last July, not because of the efforts of Dr. Baggerly and Dr. Coombes, but because a trade publication, The Cancer Letter, reported that the lead researcher, Dr. Potti, had falsified parts of his résumé. He claimed, among other things, that he had been a Rhodes scholar.

"It took that to make people sit up and take notice," said Dr. Steven Goodman, director of oncology biostatistics at Johns Hopkins University.

In the end, four gene signature papers were retracted. Duke shut down three trials using the results. Dr. Potti resigned from Duke. He declined to be interviewed for this article. His collaborator and mentor, Dr. Nevins, no longer directs one of Duke's genomics centers.

The cancer world is reeling.

The Duke researchers had even set up a company — now disbanded — and planned to sell their test to determine cancer treatments. Duke cancer patients and their families, including Mrs. Jacobs's husband, Walter Jacobs, say they feel angry and betrayed. And medical researchers see the story as a call to action. With such huge data sets and complicated analyses, researchers can no longer trust their hunches that a result does — or does not — make sense.

"Our intuition is pretty darn poor," Dr. Baggerly said.

http://www.nytimes.com/2011/07/08/health/research/08genes.html?_r=1&smid=tw-nytimes&seid=auto

Stressed and Depressed, Koreans Avoid Therapy - NYTimes.com

SEOUL — It can sometimes feel as if South Korea, overworked, overstressed and ever anxious, is on the verge of a national nervous breakdown, with a rising divorce rate, students who feel suffocated by academic pressures, a suicide rate among the highest in the world and a macho corporate culture that still encourages blackout drinking sessions after work.

More than 30 South Koreans kill themselves every day, and the suicides of entertainers, politicians, athletes and business leaders have become almost commonplace. The recent suicides of four students and a professor at Korea's leading university shocked the nation, and in recent weeks a TV baseball announcer, two professional soccer players, a university president and the former lead singer in a popular boy band killed themselves.

And yet Koreans — while almost obsessively embracing Western innovations ranging from smartphones to the Internet to cosmetic surgery — have largely resisted Western psychotherapy for their growing anxieties, depression and stress. Talk-therapy modalities with psychiatrists, psychologists and other types of trained counselors are only slowly being accepted, according to mental health experts here.

"Talking openly about emotional problems is still taboo," said Dr. Kim Hyong-soo, a psychologist and professor at Chosun University in Kwangju.

"With depression, the inclination for Koreans is to just bear with it and get over it," he said. "If someone goes to a psychoanalyst, they know they'll be stigmatized for the rest of their life. So they don't go."

Mental health experts said many troubled South Koreans seek help from private psychiatric clinics (and pay their bills in cash) so their government-insurance records do not carry the stigma of a "Code F," signifying someone who has received reimbursement for such care.

Even when Koreans do seek out counseling, the learning curve can be steep.

A prominent psychiatrist with a practice in Seoul, Jin-seng Park, said it was not uncommon for some new patients to come to his office, talk over a problem for 40 minutes and then be shocked when they're presented with a bill.

"They'll say, 'I have to pay? Just for talking? I can do that for free with my friend or my pastor,"' said Dr. Park.

Patients also balk, he said, at the idea of spending more than a couple sessions on talk therapy. Instead, most patients simply ask for, and expect, medication, said Dr. Park, whose Web site advises that "nearly all of the medications used in the U.S. are available here, too. So don't worry about getting those medications in Korea."

About a third of his patients come for counseling, Dr. Park said, and the rest rely on medication.

"Koreans are getting more comfortable with Western psychotherapy, but this is limited to the highly educated and those familiar with Western ways," said Dr. Oh Kyung-ja, a Harvard-trained professor of clinical psychology at Yonsei University in Seoul.

Meanwhile, the suicide rate in South Korea is nothing short of alarming, nearly three times higher than in the United States. The rate here doubled in the decade between 1999 and 2009. Suicide pacts among strangers who meet online is a growing phenomenon. Suicides by drinking pesticides, hanging or jumping from tall buildings are the most common.

"We have seen a rapid increase in depression, and I'd say 80 to 90 percent of our suicides are byproducts of depression," said Dr. Kim. Government mental health clinics have proved effective in helping with basic family or marital problems, he said, "but they're not getting at depression."

"That issue is still very closed. We still conceal it."

South Korean society has traditionally been underpinned by Buddhist and Confucian values, which emphasize diligence, stoicism and modesty. Individual concerns are secondary. Preserving dignity, or "face," especially for the family, is paramount.

Some experts trace South Korea's emotional malaise to the decline of these traditional values and the rise of the country as a modern industrial power, starting in the 1980s. South Korea, once even poorer than woeful North Korea, now boasts the world's 13th-largest economy.

"As the society became more oriented toward materialism, people started to compare themselves," said Dr. Park. "There's a lot of competition now, even starting in childhood, and the goals of life have moved. We have a saying, 'If one cousin buys land, the other cousin gets a stomachache."'

With Confucian values on the wane, Koreans use a variety of ways — short of prescribed medications — to wick off the stresses of the hectic pace of urban life. Consulting shamans, outdoor exercise like golf and hiking, alcohol, organized religion, the Internet and travel are common outlets now.

Christian pastoral counseling can be a support for some patients, said Dr. Park, who has tutored ministers on therapeutic techniques, although he cautioned that this was no substitute for professional therapy. "Pastors try to treat patients themselves," he said, "and this can have serious and dangerous complications, even deaths."

Consulting a shaman is still common among many Koreans, usually when they come down with the blues, the odd illness or a run of bad luck. Indeed, shamanism has made something of a comeback in South Korea in recent years, with an estimated 300,000 shamans ministering to clients.

Many shamans, known as mudang, even operate sophisticated Web sites these days (complete with online fortunetelling), even as they continue to strangle chickens, walk barefoot on razor blades and commune with dead relatives whose spirits reside in trees, chimneys or woodland creatures.

"More Koreans see fortunetellers than psychiatrists," said Dr. Yoon Dae-hyun, a psychiatrist at Seoul National University Hospital and an official with the Korean Association for Suicide Prevention. "Our biggest competitors are fortunetellers and room salons. They certainly make more money than us."

Room salons are after-work clubs frequented by hard-drinking businessmen who select from a bevy of personal hostesses who ply them with expensive drinks and listen to their problems over the course of an evening.

Yu Jeong is a fortuneteller at Daily Motion, a cafe in Seoul that features 15-minute readings (and a free waffle) with the purchase of a coffee.

"Psychiatrists treat patients like patients, so the people don't tell them every bad thing," she said. "Young people come in here and tell me everything, even the things they won't tell their parents."

Young people in South Korea are certainly unhappy, even chronically so, in part because of ferocious academic pressures that begin early on. A recent survey here found that young Koreans — for the third straight year — were the unhappiest youngsters in a subset of Organization for Economic Cooperation and Development countries.

Ms. Yu said she counsels about 50 people a day, usually couples or small groups of friends who are seeking advice on romance, marriage or changing jobs.

"Koreans are trying to find their own 'package,' their own set of remedies — and they're doing this very intensely, of course," said Dr. Oh, the Yonsei professor. "They are desperately searching for things to do to divert themselves from stress. They just don't have a good model."

http://www.nytimes.com/2011/07/07/world/asia/07iht-psych07.html?src=rechp&pagewanted=print

Patient Commando Arsenal

So you've just been told you have a serious illness.  Just hearing the word "SERIOUS" is enough to scare any one of us half to death.

What's a "Good Patient" to do?

Doctors take years to graduate and become specialists. And even then, they're still only practicing medicine. That's right – practicing medicine. Have you ever wondered when they're going to stop practicing and do it for real?

It may sound like a corny old joke, but, Patients don't get any time to Practice. Once you're told you've got a serious illness, you get thrown into the game right away.

We've compiled a growing arsenal of tools, strategies, tactics and other important stuff that can equip you to grow from a "Good Patient" to a "Patient Commando".

Take advantage of our collection and check back often to see what's new. And if you've got something to add, email us at arsenal@patientcommando.com

1. Patient Commando Tactics
2. Patient Commando Bill of Rights
3. New Patient Checklist
4. Patient Support Groups
5. Side Effects Alert

http://www.patientcommando.com/arsenal.html

Medical Information for Children - Comic Book Store

Millions of children worldwide are diagnosed every day with conditions that even their parents may find difficult to comprehend. Most children don't understand their medical conditions, or associated investigations, procedures and treatments, and are often scared by what is going on around them.

That is where the Medikidz come into action!

The Medikidz are five energetic, larger-than-life superheroes on a mission to help young people understand illness and medical concepts. Chi, Pump, Skinderella, Axon and Gastro take children on a journey through Mediland - an outerspace planet shaped just like the human body - to explain the diagnosis, investigation, treatment and prevention of different medical conditions.

The Medikidz characters live on 'Mediland' - a living, moving planet shaped just like the human body. The children are taught about their own body by going on a personal tour through Mediland. Medikidz is designed specifically for young people: therefore we will speak their language, at their level. Think "Marvel meets Medicine" and you have the concept!

Credibility is the cornerstone to the Medikidz offering - professional medical writers and doctors write all the content, which is subsequently peer-reviewed by leading consultants in each respective field. Medikidz also gains the endorsement of established and well-regarded medical institutions, foundations and spokespeople. Medikidz has established a Medical Advisory Board, consistsing of dozens of the world's preeminent physicians, as well as a Youth Advisory Board, a group of young people aged 6-16 years old, affected by illness, whose voice and opinion help to shape the direction of Medikidz.

As well as the 25 current comic book titles on paediatric conditions (such as Epilepsy, Scoliosis, Leukaemia and Cystic Fibrosis) Medikidz have also produced titles relating to adult conditions, so that a parent/loved one, when faced with a diagnosis, has somewhere to turn to help them explain it to their children. Already published is "What's Up With Mum? Medikidz Explain Breast Cancer" and "What's Up With Dad? Medikidz Explain Melanoma" and next in this series will be, "What's Up With Grandpa? Medikidz Explain Alzheimer's Disease", with Colon Cancer, Parkinson's, Multiple Sclerosis and Schizophrenia to follow. Medikidz keep on getting approached all the time to write on new conditions - infact now there is a list of 300 to do! Medikidz also produce pamphlets and brochures explaining paediatrically-licensed medicines (increased understanding can lead to improved adherence) and hospitals investigations, such as "Medikidz Explain MRI Scan" or "Medikidz Explain Endoscopy".

http://www.medikidz.com/shop/

Does health coverage make people healthier? A new study provides a compelling answer to the vexing question underlying the health care debate. - By Ray Fisman - Slate Magazine

The passage of last year's Affordable Care Act promised to bring health coverage to all Americans, including the country's poorest and least likely to be covered under the current system: Among the act's many provisions was a guarantee of Medicaid coverage for uninsured low-income adults.

As with many aspects of the ACA, the effect of insuring millions of poor Americans represents a leap into the unknown. How much more health care would they use, at what cost, and to what benefit? Would Medicaid actually produce healthier, more able-bodied Americans? Or simply increase health care use with no discernable payoff? Would it even increase medical access at all?

A landmark study released this morning on a major health policy experiment in Oregon provides some hint at what the answer to these questions might be if the ACA becomes a reality. A consortium of researchers from MIT, Harvard, and the state of Oregon has studied the impact of randomly assigning Medicaid insurance to poor Oregonians in 2008 as part of an expansion of the state's health coverage. They found that Medicaid's impact on health, happiness, and general well-being is enormous, and delivered at relatively low cost: Low-income Oregonians whose names were selected by lottery to apply for Medicaid availed themselves of more treatment and preventive care than those who remained excluded from government health insurance. After a year with insurance, the Medicaid lottery winners were happier, healthier, and under less financial strain.

While the financial and health effects of medical insurance may seem self-evident, the costs and benefits of insurance can actually go in either direction. For example, one oft-cited rationale for making insurance universal is to discourage people from falling back on costly (to society) emergency room visits for problems that could be dealt with in a doctor's office. The insured may also seek treatment earlier than the uninsured, saving the state from covering costly hospital stays that could have been prevented by pre-emptive care. (But then again, they might not.) At the other extreme, the financial costs of expanding health coverage are potentially enormous if it turns out that the newly insured rush out to get all manner of unneeded procedures and medical attention that they no longer have to pay for.

The health benefits are also hard to gauge. Given the limitations of Medicaid, some have argued that the quality of care that comes with it is scarcely better than nothing. So why expect any health improvements at all from Medicaid enrollment? Insurance is also the source of what economists call "moral hazard," where those who are protected against the consequences of their actions take greater risks than they otherwise would. Insurance, even limited insurance, might encourage people to drive faster, eat more French fries, and keep smoking cigarettes, knowing that they at least won't be on the hook for the financial consequences of their self-destructive behavior.

One reason that the health care reform debate is so dominated by ideology rather than fact is that it is extremely hard to measure the impact of providing insurance coverage. You can't just compare people who buy insurance with those who don't because the two groups differ in all sorts of unobservable, unmeasurable ways. The kind of person who buys insurance is probably less of a risk taker to begin with, for example, and also more concerned about his health. And since most Americans get health insurance through their employers, it's only the unemployed and people with lousy jobs who are shut out of insurance—i.e., the types of people who are typically in worse health to begin with. Bad health itself may result in job loss, financial calamity, and loss of insurance, reversing the chain of causation.

Oregon provided a window of opportunity for identifying the impact of insurance when it opened a waiting list for a limited number of new spots in the Oregon Health Plan Standard that provided Medicaid insurance to poor adults who didn't quite meet the usual conditions for Medicaid (for example, poor but able-bodied adults). Nearly 90,000 Oregonians applied for the 10,000 slots, and the state picked the lucky Medicaid recipients by lottery. This gave the researchers a group of insurance applicants who were identical in every way except whether they got lucky in the OHP draw. If the lottery winners ended up spending more time at doctors' offices or told researchers they were happier and healthier, it wouldn't be because of some pre-existing condition or circumstance. Their insurance status was quite literally the luck of the draw.

The state conducted eight lottery drawings during 2008. The winners received the right to apply for Medicaid, and about 30 percent of these ultimately were enrolled in the program. (Many failed to submit their applications, and about half of those who applied were found to be ineligible, mostly because their incomes were above the poverty line.) The researchers followed both lottery winners and losers over the following year by matching their sample of lottery applicants to hospital and other administration data. They also conducted surveys on the health, general well-being, and financial circumstance of both groups.

The study turns up a number of stark differences between the "treatment" (those who received Medicaid) and "control" (those who didn't) groups, some more surprising than others. Those selected by the lottery were about 7.5 percent more likely to be admitted to the hospital for treatment. But when you take into account the fact that most lottery winners never actually got insurance (and some lottery losers found other insurance), the numbers suggest that insurance increased the chances of hospital admission by 30 percent.

Relative to the control group, the newly insured used more of just about every kind of health care service the researchers considered. This included big jumps in preventive care, ranging from a 60 percent increase in mammograms to a more than 50 percent increase in having a regular doctor and clinic for primary care needs.

The only type of care with no statistically discernible increase—or decrease—was emergency room use. Given that usage goes up or is at best flat in the one area you might expect to see a decline, adding to Oregon's Medicaid rolls naturally added to state health care expenses. A rough calculation based on the increased service use is around $800 per year per enrollee. (The full cost to the state of Oregon is much higher, since the government is now on the hook for all the services that the new enrollees had been using previously, many of which had presumably been covered by charity care and other nongovernment service providers that care for the uninsured.)

Given the added expense, did the Medicaid expansion prove to be cost-effective? That is, did the treatment group actually have better health outcomes? It's too early to really see how much the increase in early interventions pay off in terms of heart disease, cancer, or life expectancy. But to get a sense of whether there were health improvements even within the first year, the researchers surveyed the lottery participants on the state of their health in the summer of 2009, a year or so after Medicaid enrollment. At least based on their survey responses, the health impact of medical access was already kicking in. Insurance increased the chances that a respondent reported himself in "good," "very good," or "excellent" health (as opposed to "poor" or "fair") by 25 percent, and reduced the number of "sick days"—days lost to work and/or recreation because of poor health—by about 15 percent.

The survey also asked whether respondents were "happy, pretty happy, or not too happy." The insured were 32 percent more likely to answer "happy" or "pretty happy." This is an enormous effect. To get a sense of how large, it's helpful to use estimates from studies that link income to happiness as a benchmark. You'd have to double a participant's income to see an effect like this, making Medicaid ridiculously good value for money. Better health is surely part of the reason for the more upbeat view of life. But insurance also relieves the financial anxieties that come with being uninsured in America—the fear that, quite literally, one wrong step could spell financial calamity. The study found that Medicaid recipients were 40 percent less likely to skimp on other financial obligations as a result of medical bills, and presumably even those that never had health problems worried less about such possibilities.

There are limits to what you can extrapolate from one, single-year study of 10,000 Medicaid recipients in Oregon to health care reform more generally. If millions of poor Americans were enrolled in Medicaid tomorrow, it might overwhelm the system's capacity. And while the program might have longer-term effects not seen in a one-year study, as preventive care starts to have an impact, it's also possible that the benefits of Medicaid may lessen with time. For example, once people adjust to their newly insured circumstances, their sense of contentment and well-being may quickly dissipate. We'll have more information on these long-term effects as researchers survey participants in the Oregon Medicaid lottery in future years. They're also collecting data on physiological measures like cholesterol levels and blood pressure to measure more objectively participants' well-being.

For now, though, the study represents the best evidence we've got. And based on its findings, Medicaid seems like a very cheap way of making Americans better off, and the goals of the Affordable Care Act well worth fighting to put into practice.

http://www.slate.com/id/2298463/pagenum/all/

F as in Fat: How Obesity Threatens America's Future 2011 - Trust for America's Health

Adult obesity rates increased in 16 states in the past year and did not decline in any state, according to F as in Fat: How Obesity Threatens America's Future 2011, a report from the Trust for America's Health (TFAH) and the Robert Wood Johnson Foundation (RWJF).  Twelve states now have obesity rates above 30 percent. Four years ago, only one state was above 30 percent.

The obesity epidemic continues to be most dramatic in the South, which includes nine of the 10 states with the highest adult obesity rates. States in the Northeast and West tend to have lower rates. Mississippi maintained the highest adult obesity rate for the seventh year in a row, and Colorado has the lowest obesity rate and is the only state with a rate under 20 percent.

This year, for the first time, the report examined how the obesity epidemic has grown over the past two decades. Twenty years ago, no state had an obesity rate above 15 percent.  Today, more than two out of three states, 38 total, have obesity rates over 25 percent, and just one has a rate lower than 20 percent. Since 1995, when data was available for every state, obesity rates have doubled in seven states and increased by at least 90 percent in 10 others. Obesity rates have grown fastest in Oklahoma, Alabama, and Tennessee, and slowest in Washington, D.C., Colorado, and Connecticut.

"Today, the state with the lowest obesity rate would have had the highest rate in 1995," said Jeff Levi, Ph.D., executive director of TFAH. "There was a clear tipping point in our national weight gain over the last twenty years, and we can't afford to ignore the impact obesity has on our health and corresponding health care spending."

Obesity has long been associated with other severe health problems, including diabetes and high blood pressure. New data in the report show how rates of both also have risen dramatically over the last two decades. Since 1995, diabetes rates have doubled in eight states. Then, only four states had diabetes rates above 6 percent.  Now, 43 states have diabetes rates over 7 percent, and 32 have rates above 8 percent. Twenty years ago, 37 states had hypertension rates over 20 percent. Now, every state is over 20 percent, with nine over 30 percent.

Racial and ethnic minority adults, and those with less education or who make less money, continue to have the highest overall obesity rates:

• Adult obesity rates for Blacks topped 40 percent in 15 states, 35 percent in 35 states, and 30 percent in 42 states and D.C.
• Rates of adult obesity among Latinos were above 35 percent in four states (Mississippi, North Dakota, South Carolina, and Texas) and at least 30 percent in 23 states.
• Meanwhile, rates of adult obesity for Whites topped 30 percent in just four states (Kentucky, Mississippi, Tennessee, and West Virginia) and no state had a rate higher than 32.1 percent.
• Nearly 33 percent of adults who did not graduate high school are obese, compared with 21.5 percent of those who graduated from college or technical college.

More than 33 percent of adults who earn less than $15,000 per year were obese, compared with 24.6 percent of those who earn at least $50,000 per year.

"The information in this report should spur us all - individuals and policymakers alike - to redouble our efforts to reverse this debilitating and costly epidemic," said Risa Lavizzo-Mourey, M.D., M.B.A, RWJF president and CEO. "Changing policies is an important way to provide children and families with vital resources and opportunities to make healthier choices easier in their day-to-day lives."

This year's report also includes a series of recommendations from TFAH and RWJF on how policymakers and the food and beverage industry can help reverse the obesity epidemic.

http://www.healthyamericans.org/report/88/

Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope

Randye Kaye is a national voice talent and actress, also currently heard as part-time newscaster and classical music host on NPR affiliates WSHU-FM and AM. Prior to that, while raising her children, she was a full-time morning personality for a top-rated Connecticut radio station in addition to her voiceover, on-camera and theatre work. During that time, her son Ben was going through confusing and often terrifying changes: what she later learned had been the symptoms of gradual-onset schizophrenia. So at work, her job was to make people laugh – but her "hobby" became mental illness. She finally found education and support through NAMI, the National Alliance on Mental Illness, and became a teacher and the Connecticut State Trainer for its Family-to-Family educational course.

After leaving Morning Radio (and the 3:15 AM wake-up calls) behind, Randye was asked to write about Ben's illness and recovery, and how it had affected her family. The result is "Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope" (September 16, 2011, Rowman and Littlefield Publishers). Randye speaks frequently to professional providers and families about the process of coping with the challenges – including stigma – when mental illness strikes a loved one.

http://benbehindhisvoices.com/blog/

Ben Behind His Voices is the gripping story of one family's challenging experience when their firstborn is gradually struck down by schizophrenia – and how they learned to love and support him throughout his eventual steps to recovery. This page-turning narrative will inspire and educate any family going through hard times with the mental illness of a loved one. It also provides valuable insight for others who want to understand how families are affected when mental illness strikes.

http://benbehindhisvoices.com/

Amazon:

http://www.amazon.com/Ben-Behind-His-Voices-Schizophrenia/dp/1442210893/

Hope or letting go: The final goodbye – The Chart - CNN.com Blogs

Ten years ago, as part of a Burn Unit team, I faced a moral dilemma.

Should a doctor give a patient's loved ones hope no matter the situation? Or should he allow them to say goodbye when a situation seems hopeless?

The decision we made haunts me to this day.

I am a junior surgery resident.

I stand with my attending surgeon, Dr. M., a physician who has spent more than 25 years in the Burn Unit. We're gowned, gloved, and waiting in silence with the rest of the team for our patient to arrive. The double doors fly open, and the EMTs wheel in our patient - Jerry, in his mid-30s, the victim of an industrial explosion.

Severe burns cover over 90% of Jerry's body. I can see that Jerry is awake and able to speak through a large plastic mask blowing oxygen into his face. I help the EMTs and nurses sweep him from the stretcher to the table.

I look at Dr. M. I've been in the Burn Unit only a few days, but anyone could read the concern on his face. Jerry is fighting for his life.

The nurses spring into action. They cut off the remainder of Jerry's charred clothing, place another IV and insert a catheter into his bladder. As Dr. M assesses the extent of the burns, Jerry thrashes in agony. The Burn Unit secretary pulls me aside. "His family is here. His wife and young daughter are in the waiting room."

I look at Jerry. His breathing becomes more labored.

"We need to intubate," Dr. M says.

The anesthesiologist, the respiratory therapist and Dr. M ready the ventilator.

I know what this means. A patient who has suffered severe burns over 90% of his body faces approximately a 15% chance of survival. If Dr. M puts Jerry to sleep on the ventilator, chances are he will never wake up.

I'm new on the Burn Unit and we are working against the clock, but I am part of the team and the moral dilemma hits me head on. I have to ask.

"Before you intubate him, do you think we should have his wife and daughter come in to say goodbye?"

Dr. M stops. He considers my question.

"No, Tony," he says. "They don't want to hear that. He's in terrible shape and can barely speak. We need to give them hope."

I look at the head nurse. She nods.

Dr. M and the anesthesiologist sedate Jerry, insert a breathing tube and attach it to the ventilator. Dr. M walks out to the waiting room to speak to his wife and daughter.

In a few minutes, he returns with Jerry's wife. They walk to Jerry's bedside where Dr. M pulls a chair over for her. She sits heavily, looks at her peacefully sleeping husband and holds his bandaged hand. When I leave a few minutes later to prepare physician orders, Jerry's wife is still sitting by his side.

He dies less than 24 hours later.

I have no doubt that Dr. M believed he was doing the right thing. He's an experienced, compassionate physician who's saved thousands of lives.

Would it have been preferable for Jerry's wife to see him sedated, peaceful and for her to cling to the slight hope that he might survive? Or would it have eased her loss to have had the opportunity to say goodbye, even if it meant seeing him in grave pain?

Ten years later, I still wonder.

Anthony Youn, M.D., is a plastic surgeon in Metro Detroit. He is the author of "In Stitches," a humorous memoir about growing up Asian American and becoming a doctor.

http://thechart.blogs.cnn.com/2011/07/06/hope-or-letting-go-the-final-goodbye/?hpt=hp_bn6

Really? The Claim: Hospital Mortality Rates Rise in July - NYTimes.com

THE FACTS

Does an influx of medical trainees mean a spike in medical mistakes?

Every July, a new class of medical school graduates begins residency programs at teaching hospitals, giving rise to a popular belief that this month is a bad time to go in for treatment. Researchers call it the "July effect," referring to the idea that mishaps and mortality rates rise when a fresh group of residents arrives at a hospital.

Though numerous studies have produced varying findings, a majority have found little evidence of such an effect. In a study published in Annals of Surgery, University of Michigan researchers examined mortality rates among 320,000 surgical patients over three years. They found no "significant monthly or seasonal variation in operative mortality rates."

Another study, by researchers at the University of Minnesota, compared outcomes among heart patients from July to September with outcomes from October to June. The analysis found no significant difference in the medical management of patients in the two periods, and the authors disputed the idea of a "July phenomenon."

But some researchers say looking at surgical residents and outcomes for severely ill patients obscures the effect, since surgical residents are often part of a team and patients with the most serious conditions receive more attention. The problem may be more apparent with regard to medical residents and their prescribing practices.

Last year in The Journal of General Internal Medicine, for example, a large study of teaching hospitals over several decades found that fatal medication errors spiked by 10 percent in July. The more such hospitals in a region, the authors concluded, the greater the spike in fatal errors. Some critics, however, noted that much of the data was collected decades ago, when residents were less closely supervised.

THE BOTTOM LINE

Though the debate continues, most studies have not found a spike in hospital mortality rates in July.

http://well.blogs.nytimes.com/2011/07/04/really-the-claim-hospital-mortality-rates-rise-in-july/

New Autism Study Implicates Environmental Factors - NYTimes.com

A new study of twins suggests that environmental factors, including conditions in the womb, may be at least as important as genes in causing autism.

The researchers did not say which environmental influences might be at work. But other experts said the new study, released online on Monday, marked an important shift in thinking about the causes of autism, which is now thought to affect at least 1 percent of the population in the developed world.

"This is a very significant study because it confirms that genetic factors are involved in the cause of the disorder," said Dr. Peter Szatmari, a leading autism researcher who is the head of child psychiatry and behavioral neuroscience at McMaster University in Ontario. "But it shifts the focus to the possibility that environmental factors could also be really important."

As recently as a few decades ago, psychiatrists thought autism was caused by a lack of maternal warmth. And while that notion has been discarded in favor of genetic explanations, there has been growing acceptance that genes do not tell the whole story, in part because autism rates appear to have increased far faster than our genes can evolve.

"I think we now understand that both genetic and environmental factors have to be taken seriously," said Dr. Joachim Hallmayer, an associate professor of psychiatry and behavioral sciences at Stanford and the lead author of the new study, which is to be published in the November issue of Archives of General Psychiatry.

Other experts have cited factors like parental age, multiple pregnancies, low birth weight and exposure to medications or maternal infection during pregnancy.

In the new study, the largest of its kind among twins, researchers looked at 192 pairs of identical and fraternal twins whose cases were drawn from California databases. At least one twin in each pair had the classic form of autism, which is marked by extreme social withdrawal, communication problems and repetitive behaviors. In many cases, the other twin also had classic autism or a milder "autism spectrum" disorder like Asperger's syndrome.

Identical twins share 100 percent of their genes; fraternal twins share 50 percent of their genes. So comparing autism rates in both types of twins can enable researchers to measure the importance of genes versus shared environment.

The study found that autism or autism spectrum disorders occurred in both children in 77 percent of the male identical twins and in 50 percent of the female identical twins. As expected, the rates among fraternal twins were lower: 31 percent of males and 36 percent of females.

But surprisingly, mathematical modeling suggested that only 38 percent of the cases could be attributed to genetic factors, compared with the 90 percent suggested by previous studies.

And more surprising still, shared environmental factors appeared to be at work in 58 percent of the cases.

"We, like everyone else, were very surprised because we didn't expect it to be that high," said a senior author of the study, Neil Risch, a geneticist and epidemiologist at the University of California, San Francisco.

The rate of autism occurring in two siblings who are not twins is much lower, suggesting that the conditions the twins shared in the womb, rather than what they were exposed to after birth, contributed to the development of autism.

A second article, also released early on the journal's Web site, found an elevated risk of autism in children whose mothers took a popular type of antidepressant during the year before delivery. But the authors reassured women taking these drugs — so-called S.S.R.I.'s like Prozac, Zoloft, Celexa and Lexapro — that the risk was still quite low: 2.1 percent in children whose mothers used them in the year before delivery, and 2.3 percent in the first trimester of pregnancy.

Dr. Joseph Coyle, the editor in chief of the psychiatry journal, called the two studies "game changers."

Clara Lajonchere, an author of the twin study and vice president of clinical programs for the research and advocacy organization Autism Speaks, said that "much more emphasis is going to be put on looking at prenatal and perinatal factors with respect to autism susceptibility."

She added, "We need to not just study the environmental factors, but the relation between the genes and the environment."

"For pregnant women or those thinking about having a family," she said, "prenatal care is critical, and if a pregnant woman is taking any kinds of medication, she should work closely with a physician."

http://www.nytimes.com/2011/07/05/health/research/05autism.html?hpw

Drug companies in America: The costly war on cancer | The Economist

Cancer is not one disease. It is many. Yet oncologists have long used the same blunt weapons to fight different types of cancer: cut the tumour out, zap it with radiation or blast it with chemotherapy that kills good cells as well as bad ones.

New cancer drugs are changing this. Scientists are now attacking specific mutations that drive specific forms of cancer. A breakthrough came more than a decade ago when Genentech, a Californian biotech firm, launched a drug that attacks breast-cancer cells with too much of a certain protein, HER2. In 2001 Novartis, a Swiss drugmaker, won approval for Gleevec, which treats chronic myeloid leukaemia by attacking another abnormal protein. Other drugs take different tacks. Avastin, introduced in America in 2004 by Genentech, starves tumours by striking the blood vessels that feed them. (Roche, another Swiss drug giant, bought Genentech and its busy cancer pipeline in 2009.)

These new drugs sell well. Last year Gleevec grossed $4.3 billion. Roche's Herceptin (the HER2 drug) and Avastin did even better: $6 billion and $7.4 billion respectively. Cancer drugs could rescue big drugmakers from a tricky situation: more than $50 billion-worth of wares will lose patent protection in the next three years.


This month Pfizer, an American company, announced that America's Food and Drug Administration (FDA) would speed up its review of a cancer drug called crizotinib. Roche submitted an FDA application for a new medicine, vemurafenib. The industry is pouring money into clinical trials for cancer drugs (see chart).

This is part of a shift in how big drug firms do business. For years they have relied on blockbusters that treat many people. Now they are investing in more personalised medicine: biotech drugs that treat small groups of patients more effectively.

Last year the FDA approved Provenge, developed by Dendreon of Seattle to train the immune system to fight prostate cancer. In March the FDA approved Yervoy, Bristol-Myers Squibb's drug to treat melanoma. And there are promising drugs in the pipeline. Pfizer's crizotinib attacks a protein encoded by a gene found in fewer than 5% of patients with non-small-cell lung cancer. Roche's vemurafenib attacks advanced melanoma by blocking the mutated form of a gene, B-RAF. Both Pfizer and Roche are developing tests to help doctors identify suitable patients for their drugs.

The snag, from society's point of view, is that all these drugs are horribly expensive. Last year biotech drugs accounted for 70% of the increase in pharmaceutical costs in America, according to Medco, a drug-plan manager. This trend will continue as drug firms develop new ways to treat, for example, multiple sclerosis and rheumatoid arthritis.

Cancer plays a huge role in raising costs. America's National Institutes of Health predict that spending on all cancer treatment will rise from $125 billion last year to at least $158 billion in 2020. If drugs become pricier, as seems likely, that bill could rise to $207 billion.

Not all these new drugs work. In December the FDA said that Avastin's side effects outweighed its meagre impact on breast cancer. (Genentech will argue otherwise in a hearing in June.) More generally, some people reckon that new cancer drugs offer small benefits at an exorbitant price. Provenge costs $93,000 for a course of treatment and extends life by an average of four months. Yervoy costs $120,000 for three-and-a-half months. Some patients live much longer, which fuels demand for the drugs. But others spend a lot and get little. Otis Brawley, chief medical officer for the American Cancer Society, calls the new treatments "the next frontier", but adds: "We are not buying a lot of life prolongation with these drugs."

More ...

http://www.economist.com/node/18743951

e-Patient Dave's Boot Camp

The e-Patient Boot Camp is the first-ever compilation of my keynotes and panel presentations from the past two years, speaking to dozens of audiences in many sectors: hospitals, care plans, small group practices, governments, government contractors, Federal policy meetings, health IT – everything from the Quantified Self to the Israel Internet Society, from healthcare improvement to the Duke Institute on Care at the End of Life.  Get thousands of dollars of conference content in a single day, plus hands-on:

• Session 1: History of Patient Engagement, and a Case Study
  • Medical and cultural precursors; pioneers of e-patient behavior
  • Case study: my near-fatal cancer, and how the internet supplemented the excellent medical and surgical care I received
  • Pay it forward: my first blog
• Session 2: "e-Patients: Empowered, Engaged, Equipped, Enabled"
  • Discovering the e-patient movement and "the e-Patient White Paper"
  • How can it be that patients – without medical degrees – can genuinely bring value to the table??
  • Health on the internet: harnessing the value, preventing the risks
  • Doctors online – shifting the balance of online quality
• Session 3: "Give Us Our Data" – reshaping care through health IT
  • The validity and usefulness of patient access to medical records
  • Patient engagement becomes Federal policy: the US government's Meaningful Use rules
  • Data quality in our medical records: my experience
  • "Google Earth for my body"
  • Innovation in the era of Open Data; the Startup Health initiative
• Session 4: The future of "e": other e-patients and reshaping the care dynamic
  • We are many: other e-patients and their stories
  • e-Patients and clinical trials
  • Shared Decision Making: Engaged patients at the decision table
  • A glimpse of the future: What Watson may mean for e-patients and their clinicians
• Plus: hands-on exercises
  • Researching disease information – filtering the gold from the garbage
  • Patient communities
  • Group discussions

http://epatientdave.com/bootcamp/

The New Life of e-Patient Dave

"e-Patient Dave" deBronkart was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival time at diagnosis was just 24 weeks; with tumors in both lungs, several bones, and muscle tissue, his prognosis was "grim," as one web site described it.

He received great treatment at Boston's Beth Israel Deaconess Medical Center: his surgeon removed the extensive mess (laparoscopically!), and the Biologic Therapy program helped him participate in a clinical trial for the powerful but severe High Dosage Interleukin-2 (HDIL-2). His last treatment was July 23, 2007, and by September it was clear he'd beaten the disease. His remaining lesions have continued to shrink.

Today: Advocate and Activist

An accomplished speaker and writer in his professional life before his illness, today Dave is actively engaged in opening health care information directly to patients on an unprecedented level, thus creating a new dynamic in how information is delivered, accessed and used by the patient. This is revolutionizing the relationship between patient and health care providers, which in turn will impact insurance, careers/jobs, quality of life and the distribution of finances across the entire spectrum of health care.

"What's an e-Patient?"

A year after the diagnosis Dave was invited by his primary physician, Dr. Danny Sands, to join the annual retreat of the e-Patient Scholars Working Group. Founded by the late Tom Ferguson MD, a true visionary, the group consists of pioneers, both medical and lay, who have been quietly (and not so quietly) altering the balance of power in healthcare, demonstrating that as the internet brings patients together with information and with each other, a new world of Participatory Medicine is evolving, in which patients become potent agents in creating and managing their own health, in partnership with physicians.

Tom Ferguson said e-patients are empowered, engaged, equipped and enabled. Dave immediately saw himself as a match, became an active blogger on e-patients.net, and took on educating himself as much as he could. He went part-time in his day job in 2009, and left industry entirely in 2010 to devote himself full-time to healthcare.

"This is the first time in my life I've felt I have a calling," says Dave, "something I can't get away from: it's what I need to do. I've had plenty of fulfilling jobs in a great career, but not a calling. This is it."

Visit Dave's Wikipedia page

http://epatientdave.com/

In 2007, supported by an extraordinary team of family, friends, and medical staff, I stomped the snot out of a nasty cancer that was on its way to killing me. I've since learned that the way I did it has a lot in common with the advice of the "e-patients" movement, so I've changed my blogger name from Patient Dave to e-Patient Dave.

http://patientdave.blogspot.com/

Music Therapy Helps the Dying - NYTimes.com

Every week, three music therapists from MJHS Hospice and Palliative Care crisscross the city and suburbs to sing songs to the dying. With guitars strapped to their backs, a flute or tambourine and a songbook jammed in their backpacks, they play music for more than 100 patients, in housing projects, in nursing homes and even in a lavish waterfront home. The time for chemotherapy and radiation is over.

The music begins: a song to hold death at bay, a song to embrace death, or to praise God. A Vietnam veteran asks for a song in Vietnamese. One man asked only for songs with death in the lyrics, to force his family to talk to him about the future. He was ready to talk about it. They weren't. So the therapist sang Queen's version of "Another One Bites the Dust." "Amazing Grace" and other spiritual songs are most often requested just before death.

James D. Williams, 85, of Brooklyn, who is dying of cancer, says, "Right now I am on borrowed time." A therapist, Charla Burton, visits to sing hymns with Mr. Williams and his wife of 61 years, Daphne, 79. "The Lord has kept me and I am very grateful," Mr. Williams says. "With the backup of my wife. She holds on to me." Both were born in Belize, and their songs, part of their spiritual practice, have a joyful Caribbean lilt.

In Oceanside, N.Y., Merle Gross, 73, is dying of breast cancer. Sitting beside an ocean inlet, she and Ms. Burton make selections for a songbook she wants to leave behind. If there is time enough, it will include songs for every member of her family, all the people she loved and her dog, Shayna.

And in a Manhattan housing project, a mother cradles her 6-month-old daughter, Cecilia, and Meredith Traver plays a lullaby on her guitar, softly singing the words, "Papa is going to buy you a mockingbird."

One of the youngest patients in the program, Cecilia Havre, has a genetic defect, Trisomy 18; half those born with this disorder do not survive beyond the first week of life. The baby smiles at her mother, Chantel Vazquez, and her father, Eddie Havre. Cecilia is deaf, but the music soothes her parents. Cecilia is thriving in hospice — or end-of-life — care and may be moved to palliative care, where treatment may be incorporated.

Rose Vuolo, 86, an Alzheimer's patient on Long Island, has had visits from Ms. Burton for four months.

Rose rarely speaks. "She has gotten progressively worse," says her grandson, Paul Motisi. "It's become constant confusion." Except sometimes when Ms. Burton visits.

Ms. Burton plays the Cole Porter song "Begin the Beguine" — the lyrics of which even Cole Porter said he could not remember without the sheet music. Yet on a good day, Rose sings along, with perfect pitch and range. It was the song she and her husband danced to at their wedding.

Millicent Wilson, 94, who is dying of colon cancer in the Bronx, stopped singing after her husband died and she got sick, says her son, Mark V. Wilson, who stopped working to take care of her. But because of her music therapist, Yelena Zatulovsky, his mother is singing again.

At the end of a song, she asks him, "Mark, why don't you dance anymore?"

http://www.nytimes.com/2011/07/04/nyregion/music-therapy-helps-the-dying.html?