That delivers to little for Nebraskans: Senator Ben Nelson and the public option

The U.S. Senate begins debate on the health reform bill today. Certain centrist Democrats like Sen. Ben Nelson of Nebraska will have a pivotal role in deciding whether consumers will have a public option if private insurance is unavailable, unaffordable or undesirable.

Nebraska's chief medical officer is calling for more diagnosis and treatment of people with diabetes. Dr. Joann Schaefer of the Nebraska Department of Health and Human Services says that 104,000 Nebraskans have diabetes, and an additional 250,000 have it but have not even been diagnosed. The medical and indirect costs in Nebraska amount to $750 million each year, according to the Associated Press story on Saturday in the Sioux City Journal.

Senator Nelson said on Nov. 20, in a press release on his website, "The Senate should start trying to fix a health care system that costs too much and delivers too little for Nebraskans." It seems the private health insurance system there has failed 250,000 of his citizens.

Advice for Nebraskans: Call Sen. Nelson at 202-224-6551 and tell him you want a public option in the health reform bill.

Read a story about the life-saving benefit of universal health insurance.

They've beaten long odds: The diagnosis and labeling of Asperger's

Dan Coulter's advice:
My son and I have Asperger's syndrome. I've written, produced and directed 10 DVDs about Asperger's syndrome and autism. I've just finished a DVD about people who have beaten long odds and found steady employment. A common link among these employees is that they all disclosed the condition to their employers, got some reasonable accommodations and worked hard to modify challenging behaviors.

Changing the diagnosis to "autism spectrum disorder" will make job applicants less likely to disclose – and employers less likely to understand and accept – their capabilities and challenges.

In the real world, continuing to use the diagnosis of Asperger's syndrome as a condition in the autism spectrum does no harm and will help talented, deserving people find and keep employment.

The diagnosis of Asperger's syndrome should be maintained in the Diagnostic and Statistical Manual of Mental Disorders.

Read another Aspergers story. Thanks to the Letters editor of the New York Times for printing Dan's letter on Nov. 16.

I was broad-sided: Rolling meta-analyses to detect drug side effects

Anthony De Carlo's story:
In an auto accident on 6/15/01 in New Jersey, I was broadsided by a woman on a phone running a red light. I was in the hospital three days, banged up. I hurt my knee and back when I was hit.

I took Bextra for two years, 
and Celebrex. I have had one heart attack and two smaller heart attacks. An EKG revealed I have had three silent strokes, one in 2003 while I was taking Bextra and also Celebrex. I later had the EKG confirmed at a teaching hospital in New York City. I was also diagnosed with a deteriorating heart valve, which will probably require surgery.

Due to complications, I am disabled and can't work.


Though studies had been performed about the side effects of Bextra, the results had not been put together. If they had been, the dangers of Bextra would have been known years sooner. Instead, many people like Anthony suffered from major side effects. Eventually, Pfizer took Bextra off the market in 2005, acknowledging its dangerous increase in heart attacks and strokes.

Drug makers have removed several other drugs from the market after learning of their health problems. In the most recent issue of the Archives of Internal Medicine, Dr. Joseph Ross and his colleagues describe a method of statistically pooling data on drug effects in a rolling meta-analysis that could have informed Merck of the cardiovascular effects of Vioxx years before it withdrew the highly profitable drug from the market. Dr. Michael Steinman mentioned Bextra as a case in point, and added several other examples: Bayer removed the cholesterol-lowering drug Baycol from the market in 2001 after reports of serious muscle problems. Novartis withdrew Zelnorm, a drug for irritable bowel syndrome, from the market after learning of its increased risk of heart problems.

Advice: Read the story of a whistleblower on the BBC website.

Read another story about Vioxx. Thanks to Natasha Singer for the source story in today’s New York Times.

Half the rate in the U.S.: Mammograms and physicians' learning curve

The recent change in recommended mammography screening stems from a concern that the huge number of false positive readings led too many women to get unnecessary surgery, and to feel great needless anxiety.

Doctors who read a lot of mammograms are far more accurate than those who don't. To be a mammographer, the United Kingdom requires their radiologists to read ten times more mammograms than the U.S. does. That explains why the rate of false positives (when they say there IS cancer, when there really isn’t) in the U.K. is only half the rate in the U.S. A study in the Journal of the National Cancer Institute by Dr. Rebecca Smith-Bindman and others of mammograms in the U.S. confirms a similar pattern. In the largest study of its kind, they found that radiologists who read 2,500 or more mammograms each year have a false positive rate half that of radiologists who read 480 - 750 per year. And the radiologists who read the most mammograms are just as likely to detect breast cancer when it exists (in other words, their false negative rates are just as good as those of their less experienced colleagues).

Read another story about a mammogram.

Advice to women: Before your next mammogram, find a doctor who does more than 2,500 a year.

The only problem: Impersonal hospital care

Dr. Dena Rifkin's plaint:
A close family member was recently hospitalized after nearly collapsing at home. He was promptly checked in, and an EKG was done within 15 minutes. He was given a bar-coded armband, his pain level was assessed, blood was drawn, X-rays and stress tests were performed, and he was discharged 24 hours later with a revised medication list after being offered a pneumonia vaccine and an opportunity to fill out a living will.

The only problem was an utter lack of human attention. An E.R. physician admitted him to a hospital service that rapidly evaluates patients for potential heart attacks. No one noted the blood tests that suggested severe dehydration or took enough history to figure out why he might be fatigued.

A doctor was present for a few minutes at the beginning of his stay, and fewer the next day. Even my presence, as a family member and physician, did not change the cursory attitude of the doctors and nurses we met.

Yet his hospitalization met all the current standards for quality care.

As a profession, we are paying attention to the details of medical errors – to ambiguous chart abbreviations, to vaccination practices and hand-washing and many other important, or at least quantifiable, matters.

But as we bustle from one well-documented chart to the next, no one is counting whether we are still paying attention to the human beings. No one is counting whether we admit that the best source of information, the best protection from medical error, the best opportunity to make a difference – that all of these things have been here all along.

The answers are with the patients, and we must remember the unquantifiable value of asking the right questions.

Advice: Find a doctor who will take time with you.

Read another story about impersonal hospital care. Thanks to Dr. Rifkin for the source story in the NY Times of Nov. 17.

After another week on dialysis he called back: Kidney donation

The first patient to list himself publicly on MatchingDonors.com was Bob Hickey, a psychologist in his mid-fifties who'd learned he had kidney cancer. At first, he'd done what his doctor told him to do: he went on dialysis, signed up on the official waiting list for a cadaver kidney in his region, and hoped that he would reach the top of the list before he died. His transplant center told him that he should expect to wait about four years.

On dialysis, you are attached to a machine for several hours at a time, usually three or four times a week, while the machine siphons off all your blood, cleans it of toxins, and injects it back into your body. Often the process leaves you too exhausted to work, or do much of anything besides recover. After four and a half years of dialysis, Bob, still waiting on the list, decided he'd had enough. He would rather die.

Less than a month later, he saw a newspaper article about a new company starting up – MatchingDonors. Bob phoned them, and the head of the company told him the service cost $295 a month, or $595 for life. Bob told him he was a carpetbagger and a rip-off and hung up. After another week of dialysis, he called back and signed on. Within a month, he had dozens of offers.

He screened them into a smaller set, and picked one at random: Rob Smitty of Chattanooga, Tennessee. The two men talked on the phone, and agreed. Bob was so excited that he jumped in his car and drove from Vail to Denver, more than 100 miles, to the transplant center to deliver the good news. The transplant center staff cautioned him, but accepted Rob as a donor.

Surgeons performed the transplant in October, 2004. Ever since, Bob has made kidneys his life's work. He advises people who are considering transplants. He raises money to compensate donors for expenses and lost wages. (Other forms of compensation for donors are illegal.) And he's fighting the kidney establishment on several fronts.

Advice: Read the stories at MatchingDonors.com

Read another story about a kidney match through MatchingDonors. Thanks to Larissa MacFarquhar for the source story in the New Yorker of July 27.

He doesn't call, he doesn't write: Patient Family Advisory Councils for medical groups

I got an automatic phone call from my pharmacy the other day, telling me that my prescription was ready for pick-up. And an automatic phone call from our temple president about upcoming events I might want to participate in.

But during the current H1N1 scare, I haven't received an email from my doctor telling me what to do. He doesn't call, he doesn't write – does he care about me? And my daughter hasn't received an email or pro-active call from her pediatrician about it either. Why not?

There are many reasons; perhaps one of them is so obvious that no one sees it: No one told them to. No consumer advisory group said, "Doctor, in this day and age of free email, where the vast majority of your patients have an email address, it's time for you to advise them on vaccinations, prevention and treatment for H1N1 by email." Indeed, that would probably save a lot of time and hassle for the doctors' administrative staff, who wouldn't need to explain the same information for the thousandth time.

Hospitals have made many innovative changes as a result of suggestions by their patient/family advisory councils. We should encourage medical group practices to form advisory councils and hear their ideas. The time they save could be their own.

Advice: Write a note about this to your doctor and ask the doctor's office manager to make a suggestion box and put your note in it.

Read a patient/family advisory council story.

Think Olive Garden: Innovative Patient/Family Advisory Councils

The CEO of Beth Israel Deaconess Medical Center recently had the pleasure of touting a major national award for patient satisfaction won by their NICU (neonatal intensive care unit): the Family-Centered Care Award, by the Society for Critical Care Medicine. I hope to describe their advisory council's role in that in a future blog post. In an earlier post on the role of the Advisory Council for the adult ICU, Paul Levy described their use of Family Pagers:

Our Advisory Council pointed out the feeling that they had to stay in or near the ICU at all times, in case anything happened. We now provide pagers (think Olive Garden) to families that allow them to go to the coffee shop, cafeteria, and nearby shops with the confidence that we can page them if they are needed. These have received rave reviews from families, nurses, and doctors alike.

Massachusetts General Hospital has been using several patient/family councils. One helped develop a "pathway for cardiac services" that portrays the steps in a patient's treatment, so patients will know what will happen during their hospital stay. I hope to describe this in more detail in a future blog post.

At Cooley Dickinson, the annual report in 2009 on the PFAC told of another committee involving consumers that performed "a SNF [skilled nursing facility, i.e., nursing home] hand-off communication survey, which resulted in an immediate improvement in patient and post-acute provider relationships through the discharge process."

BRAVO TO THESE PIONEERING HOSPITALS!

Advice to patient advocates: Tell your families and clients to get their care at hospitals like these that actively listen and heed the patient's voice.

Read another story about innovative patient/family advisory councils.

At least they have a line to wait in: A death from lack of insurance

Sue was a 31-year-old patient of Ob-Gyn Dr. Linda Harris, in Oregon, as Nicholas Kristof writes in today's New York Times. Sue was a single mom who worked hard, sometimes two jobs at a time. Her jobs never provided health insurance, and she couldn't afford to splurge on herself to get gynecological check-ups. She went without a Pap smear for more than 12 years, though annual Pap smears are recommended. Even when she began bleeding and suffering abdominal pain, she was reluctant to see a doctor because she couldn't afford it.

She eventually sought help from a hospital's emergency room, and then a public clinic where Dr. Harris works, only to learn that she had advanced cervical cancer. Three months later, she died. Her daughter was 13.

Her death didn't have to happen. Cervical cancer has a long pre-invasive stage that can be readily detected by a Pap smear, and treated with a relatively minor procedure.

"People talk about waiting lines in Canada," Dr. Harris says, adding, "Well, at least they have a line to wait in."

As Kristof notes, national health reform would cost about as much each year as a year of our continued fighting in Afghanistan. Both purport to save lives. Viewed with the cold, hard lens of cost-effectiveness, financial prudence would clearly lead us to prefer saving the 45,000 people like Sue whose lives were lost from lack of insurance, according to a Harvard study published in September, over the very few who die from terrorist acts each year.

Advice: Share this with conservative legislators who are concerned about our government's return on its investment.

Read a much happier story about a lack of insurance. Thanks to Nicholas Kristof for the source story.

A pinstriped evangelist: V.A. Secretary Shinseki's advocacy for veterans

The New York Times wrote today that Eric "Shinseki has been criss-crossing the country as Pres. Obama's pinstriped evangelist for veterans' care, raising concerns about a coming tide of post-traumatic stress cases, traumatic brain juries and other physical and psychological scars of battle."

He says, "What's natural for me is trying to tell the story that soldiers need told. It's not my story, it's their story." Nonetheless, his own story of losing a part of his foot in combat in Vietnam is instructive. He says, "All of us who went through combat, we were carrying a little baggage from the experience, the stress."

A former general, Shinseki won notoriety by speaking truth to power, warning Pres. Bush of a shortage of American troops in Iraq. Now continuing to state the truth as he sees it, he has requested what would be the largest single-year increase in the budget of the Department of Veterans Affairs in 30 years.

Advice: Share this story with a vet, and remind them that help may be available if they want it.

Read a story about our veterans. Thanks to James Dao and Thom Shanker for the source story.

The suffering they save may be their own: A registry for medical devices in the House’s health reform bill

The U.S. House of Representatives passed the healthcare reform bill (H.R. 3962) over the weekend - an historic achievement. The long bill is being analyzed; one underappreciated piece calls for a national registry for medical devices, in Section 2571, on page 1501.

People like Stephen Csengeri will benefit. The registry will allow for common defects in a specific device to be discovered more quickly, in time to dissuade other patients from using them and suffering similar results.

Bravo to the members of Congress who voted for the bill! The suffering they save may be their own…

Advice to those considering an implanted medical device: For now, you'll need to research the specific make and model of the device on the Internet to learn of any common problems, and ask your surgeon about them.

Read a story about a medical device error.

The alternative was to have no insurance: Betting on good health

Carl Arrington, 58, is a free-lance writer and chef in New York. When his company closed shop nine years ago, at first he chose to pay for extended coverage under COBRA. But the high premiums forced him into a difficult decision: he dropped the insurance.

"The alternative was to have no insurance, which was so scary in the beginning," he said. "And then I decided, look, when you have insurance you're betting that you're going to get sick."

He decided to change his lifestyle. He stopped eating meat, and cut excess sugar from his diet. He began to exercise, eventually losing 40 pounds.

He still sees his physician annually for checkups, but he avoids screening tests like colonoscopies. If doctors discovered something that needed further treatment, he said, he probably could not afford it anyway.

"I am in control of my health, and I'm not afraid of dying. What more do you need?" he asks.

Advice: Stay healthy – and work for universal health insurance.

Read another story about a limitation of the COBRA safety net.

Thanks to Karen Barrow for the source article in the New York Times of Nov. 4, and to Alex di Suvero.

Outside the chemo treatment room: Insurance denials

From Nicholas Kristof's column:

I regularly receive heartbreaking emails from readers simultaneously combating the predation of disease and insurers. One correspondent, Linda, told me how she had been diagnosed earlier this year with abdominal and bladder cancer – leading to battles with her insurance company.

"I will never forget standing outside the chemo treatment room knowing that the medication needed to save my life was only a few feet away, but that because I had private insurance it wasn't available to me," Linda wrote. "I read a comment from someone saying that they didn't want a faceless government bureaucrat deciding if they would or would not get treatment. Well, a faceless bureaucrat from my private insurance made the decision that I wouldn't get treatment and that I wasn't worth saving."

Advice: Insist that your representatives in Congress vote for a public plan that will cover people like Linda.

Read another story on an insurer’s denial of chemotherapy treatment.

Thanks to Nicholas Kristof for the source column in today's New York Times.

I can’t hear you while I’m listening: Communicating with your doctor

A stethoscope amplifies inaudible heart and lung sounds in a very satisfying way. If, however, the owner of the organs under evaluation decides to make a comment during the exam, what results is a painfully loud, unintelligible blast of noise directly into the doctor's head.

It was during such an interruption almost 30 years ago that Dr. Richard Baron, a Phiadelphia internist, grumbled at his patient: "Shhh. I can't hear you while I'm listening." The phrase has undoubtedly been said by many, but Dr. Baron was the one with the wit to stop and laugh (and reflect at length in a classic medical article), realizing that he had enunciated in pure koan form probably the single greatest tension in modern medical practice.

Against the siren song of all those beautiful instruments and machines, whatever the patient has to say is sometimes just an annoying interruption.

This is a caution about the use of technology. It's also a caution to patient advocates, to ensure we don't get in the way of the doctor's listening to the patient.

Advice: Find a doctor who listens to you – and do your part by enabling him or her to listen fully, in every sense of the word.

Read another physician listening story. Thanks to Dr. Abigail Zuger for the source story in the New York Times on Oct. 27.