Between sandwich bites: Testicular surgery against a father’s wishes

This is a father's complaint to the Nevada State Board of Medical Examiners:

To whom it may concern, from one who it has concerned greatly:

It is said that the greatest skill of a doctor is their bedside manners. I could agree with this in theory, the theory being predicated on the hope, my hope that the doctor is operating on all cylinders, is integrated, aligned, smart and most importantly honest. A doctor can have a wonderful personality and a wonderful bedside manner and yet, be completely deceptive, dishonest and completely unconcerned with our welfare when compared to standard practices and of course legal liability. It appears in our mostly litigious society doctors are scared of lawsuit and therefore will be most versed in how to avoid lawsuit secondary to their professional skill.

Such is the case with Dr. J.

I met her on what may have been considered a routine pre-surgical consult. The surgery we discussed was an exploratory surgery for my son's ascended right testicle. I asked lots of questions. In my world, this surgery was going to be a simple procedure because I felt a lump on my son's upper right pubic bone, which gave me assurance that his testicle was there and merely required some medical assistance to return it to where it belonged in his scrotum.

It seemed it would be a simple procedure on the doctor’s part as well because she was far more concerned with eating her lunch in either a recently vacated office or an office she has recently moved into. I followed her into this room to continue my line of questioning. I asked her about her rather flippant line where she said his testicle would be removed if it was less than the size of her pinky fingernail, while ceremoniously indicating such with her extended digits.

I asked her- "What if it is exactly the size of your fingernail?"

"I would still remove it," she replied between bites of her sandwich.

"Really? I don't like that idea. If it is the size of your fingernail, then I expect it stays in. In fact, I'd prefer if his testicle is not the size to move, then it is left alone," I said firmly. She nodded in agreement with her mouth full.

Little did I know at this point I should have pursued a more explicit confirmation of my request, as in I should have gotten this confirmation in detailed affirmation, notarized and with a medical examiner witness.

Because as it turned out later, the doctor removed my son's right ascended testicle without actually measuring it at all. To further add insult to injury to my son and to my duty to protect as Father, she claimed that it was a pre-cancerous situation and that the testicle would be tested for cancer cells. This of course was just a ruse and was never carried out. Of course a young struggling testicle will show no signs of cancer. The main problem I learned from my multiple attempts to find a pediatric urological expert witness is that Doctor J. toed the line of medical malpractice liability. If anything atrophic (by her view) is left in the body, then that is a more litigious situation then actually following the patient's parent's request. In fact, the doctor now sanctimoniously hides behind even more medical legalese by claiming that she did what was "clearly in the best interest of the patient."

How does she know what is in the best interest of the patient?

Oh, because she refers to "a multitude of medical research findings" which only gives her a bigger trench to sit with her other than conscious behavior.

I clearly told her what is in the best interest of my son and she affirmed my request. If she was somehow medically bound to complete my son's procedure with a forced removal of his testicle, then she should have told me clearly at our meeting. Because if she told me at our pre-surgical operation meeting that she is required by medical directives to avoid any future lawsuit and to remove my son's testicle I clearly would have opted out of such a railroaded situation and continued my exploration of alternative therapy.

This is the crux of my crucifixion. And this is also where I hope and pray the doctor is nailed for negligence.

There are errors of omission and then there are errors of commission.

And then there are errors of both. Errors of commission are answering a question incorrectly, which she did. Failing to answer a question or to answer a question in full is an error of omission. She did both while gleefully eating her packed lunch. Such contempt.

I choose at this time to abbreviate my letter and my complaint. I'm sure there are things I could have done differently and things I could have said differently, yet clearly someone in the room of pre-surgical consultation was licensed as the professional, yet clearly my curious questioning was indignantly refused. If I asked nothing, I could accept my results. If I refused nothing, I could accept my results. If I clearly asked and directed the doctor and she told me clearly what she was legally required to do, then I would have accepted an entirely different outcome.

The doctor should listen closer to patients, especially parents.

So in fact, bedside manners are very important. Maybe all of this would have been very different had the doctor demonstrated polite, concerned, engaged listening. And I know it would have been a significantly better outcome if the doctor revealed direct honesty of what is medically required in her surgical procedure. She even could have done this between sandwich bites, or preferably after lunch.

Advice to parents: Specify your preferences for your child’s surgery in writing beforehand and have the surgeon sign it.

Read another story about the lack of informed consent for testicular cancer.

Thanks to Bryan Brey for sharing his story.

A Sea of Broken Hearts: Fatal errors in a young athlete’s medical treatment

Dr. John James tells the heart-breaking story of his son's medical treatment:

I lost my 19-year old son several years ago in Texas due to multiple medical errors. He had collapsed while running, self-recovered, but was taken by ambulance to a hospital in his college town. There cardiologists evaluated him for 5 days and could not find any cause of his collapse. They delegated his followup to a physician in training in family medicine, she gave him a clean bill of health, and two weeks later he collapsed and died while running.

There were several catastrophic medical errors. First his cardiologists failed to apply a national, widely published guideline for potassium replacement in a person with cardiac arrhythmias, they failed to make an obvious diagnosis of acquired long QT syndrome, and they failed to warn him properly that running would be hazardous to his life. They wrote in the medical record that they warned him against running just after they gave him a second dose of Versed, a drug widely used as a sedative and known to cause amnesia. His discharge summary gave the only written instruction: do not drive for 24 hours.

I have written a book called "A Sea of Broken Hearts" that chronicles my son's botched care, the cardiologists' clumsy tampering with evidence in the medical record, and why we need a national patient bill of rights.

Dr. James' Advice: What should I have done differently? First, I had an intuition that his college-town hospital and especially the cardiologist assigned to his case were in over their head. I sensed this when his cardiologist was not interested in me getting my son's previous electrocardiogram that the Air Force had done a few months before. I should have followed my intuition.

I was not aware of how easily one can be manipulated by fear. In my son's case we were told the woeful story of Pete Maravich who collapsed and died suddenly. At the time, we did not know what informed consent really ought to be, and so we were frightened into allowing invasive testing. In my book I give good (but not absolutely conclusive) evidence that the invasive testing set my son up for death. This was combined with Alex's untreated, severe potassium depletion.

 I should never have been so trusting. I should have asked to see the details of the results of every test that was done. This way I might have found out that the hospital had screwed up his cardiac MRI. I should also have demanded to see his medical records at least twice a day. I really did not know much cardiology at the time, but I might have seen the major change in his electrocardiogram that showed that three risk factors for sudden death had disappeared...temporarily. There is no evidence in the record that his cardiologists ever looked at this second electrocardiogram.

As Julia Hallisey DDS wrote in her book "The Empowered Patient": never trust your heart to a single cardiologist; get a second opinion. I would add: make certain it is an independent second opinion rendered without knowledge of the first opinion.

Read about the organization Dr. James has launched, Patient Safety America.

Thanks to Dr. James, a patient safety hero, for forming a nonprofit organization to help others, and writing his son's painful story.

Tired but wryly triumphant: Culturally competent care for a Somali patient

On an afternoon in late September, Dr. Douglas Pryce and Dr. Osman Harare, the interpreter and patient advocate, emerged from an examining room looking tired but wryly triumphant. They had just finished negotiating, politely but persistently, with a patient who – just as politely but persistently – had refused to allow any blood tests because it was the holy month of Ramadan and he feared that having blood drawn might be a sin.

Finally, they telephoned an imam, who declared that there was no sin. The blood was drawn.

Dr. Pryce says that one of the great joys of working in a hospital like Hennepin County Medical Center in Minneapolis is finding ways to bridge such cultural divides – and knowing that his patients are better off because of it.

Advice to people of another culture: Find a medical provider and interpreter who respect your cultural beliefs and medical preferences.

Read another story about culturally competent care.

Thanks to Denise Grady for the source article in the New York Times of March 29.

An April Fool's Daydream: The physical exam

A few days ago I got a warm, funny postcard from my doctor, reminding me of my upcoming appointment, asking me to email him my medication list, and inviting me to email him with any questions I'd like to discuss. In the card, he congratulates me on the progress I've made on my fitness plan, which he has monitored by email since my last physical exam. (He'd asked whether I preferred a letter, postcard, or email for the reminder, and since I'm not concerned about confidentiality, I preferred the postcard.)

A day or so before the visit, I email him my medication list, which my pharmacy had emailed me.

When I arrive, as I've been told, I first fill out a form asking what I'd like to talk about during the visit. The assistant hands me some patient education materials about the condition I've mentioned, and I read it during the short wait to see my doctor.

In the exam room, the nurse takes my weight, blood pressure, and pulse, and shows me on a graph how they compare with my past readings.

The doctor runs through my written questions. He refers to the problem list in my electronic medical record, and the note that the ENT specialist had emailed into it, which recommended surgery for a benign nasal polyp. My primary care doctor discusses the trade-offs of different options, and supports my decision not to have surgery for now. He advises me on how to use an inhaler that can shrink the polyp, forestalling or delaying the need for surgery. He realizes from the pharmacy's medication list and refill history that I've been using the inhaler every other day instead of daily, and we discuss that. By the end of the visit, we have discussed my fitness plan and my risk factors. At the end of the visit, he hands me some printed information about my condition and his suggestions, and the recommended date for the next appointment.

Advice: Dream big dreams, and work hard to make them come true.

Read another physical exam story.

To be their own voice: Early detection of breast cancer

Rep. Debbie Wasserman Schultz held a press conference yesterday in a small dining room at the U.S. Capitol building in Washington, DC to announce legislation for a national campaign to educate young women and their doctors on the need to start early on breast cancer detection. Her bill, the EARLY Act ("Education and Awareness Requires Learning Young"), would provide $9 million annually. She says it "would encourage young women to be their own voice – to speak up for themselves and know when they need to go to their doctor. The EARLY Act will teach both young women and medical professionals alike about risk factors, warning signs of breast cancer and predictive tools such as genetic testing that can help women make informed decisions about their health."

The glamorous 42-year-old congresswoman had discovered a breast lump through self-examination in December 2007. Since then, she has undergone seven major surgeries. She learned that her Ashkenazi Jewish ancestry places her at greater risk for the cancer to spread, so she chose to have a double mastectomy, and the removal of her ovaries.

She had kept the illness private during her re-election campaign, not wanting the illness to "define" her.

After her press conference, she had another important message to convey: "I'm healthy, and I'm through it."

She had to make some very tough choices. Maybe her most heroic choice was to go public and to sponsor legislation to protect other young women. That's why she's a patient advocate hero.

Advice: Like her, help others who face the difficult healthcare choices that you've had to confront.

Read another story of a vigorous and imaginative breast cancer survivor. Thanks to Richard Leiby for the source story in today's Washington Post.

Most of them love it: A surgeon's use of humor

Here's Nurse G.P.'s letter to a nursing advice columnist:
"Dr. Sam," a good-natured general surgeon in our same-day surgery clinic, enjoys chatting with patients before procedures. To put them at ease, he regales them with humorous stories, and most of them love it. Last week, Dr. Sam told several of his favorite stories to a patient who was clearly anxious. After he left, she confided to me that she was still dreading surgery. "I had some questions that I never got to ask because he was too busy being a comedian," she said.

Advice to patients about to undergo surgery: Bring a written list of your questions to hand to the doctor or nurse, in case it's hard to get a word in edgewise.

Read a story about physicians' attempts to build rapport with patients.

Thanks to Susan Salladay, the nursing advice columnist, for the source article in the July 2008 issue of Nursing2008.

While she lay in bed: Insurance denials for pre-existing conditions

"My mother died very suddenly and very young," her adult son told AARP Bulletin last fall.

Ann Dunham died in 1995 at age 52 after working as a consultant for the U.S. Agency for International Development, the Ford Foundation and Women's World Banking. She taught her son an important lesson about access to health care. "She'd go from contract to contract and would be able to buy health insurance [only] when she got a new contract," her son said. "When she got sick, she had just signed up for a new job, a new contract, and she had a lot of arguments of whether this was a pre-existing condition of which she had no knowledge whatsoever….As someone who watched my mother argue with insurance companies while she lay in bed dying of cancer, I will make sure those companies stop discriminating against those who are sick and who need care the most."

This is more than wishful thinking on the son's part, as he is now president of the United States – Barack Obama. As he said frequently during the presidential campaign, "These are not abstractions for me."

Advice: Fight for health insurance for all.

Read a story about a pre-existing condition.

Thanks to Jim Toedtman for the source article in the March issue of the AARP Bulletin.

40th Birthday in the Kingdom: A fatal misdiagnosis by an EMT

Gina's story [the names are changed]:
My older sister was 39, almost 40, and lived in Beaufort, South Carolina, on St. Helena's Island. My kids called her Aunt Mell. One day, we had to call for emergency help for her. The firemen came first, then two EMTs (emergency medical technicians).

The emergency medical technicians (EMTs) tried to help her up, but couldn't. At that time, at 5:34 am, her pulse was 126, which was regular; she just needed oxygen. They decided not to treat her until she got up herself. One guy thought she was faking it. With a lack of oxygen, you act a little funny…But they said, If you don't get up, I'm going to call the policeman! They wouldn't let me intervene.

So they didn't treat her for some time – for 18 minutes. I was praying for everything to be all right. I was in shock. She was my big sister, and she depended on me to come through for her. That morning, when she really needed me, I felt so helpless. I tried to help her by letting them help her.

He had his boots on her arm to help her stay down, or whatever.

She went into cardiac arrest. The one EMT guy just flipped out, called her by name, and then he knew she was gone. The EMT guy tried to work on her. "We have no time to waste," he said. They tried to revive her for 15-20 minutes, but I knew she was gone already. So instead of having her 40th birthday party with us, she had it in the Kingdom [of God].

I wanted an autopsy. The nurse said, "We have to do an autopsy; who do you want to take the body? I have to talk to a family member." But they acted like there was a mix-up, like one of my other siblings had told them something different. They went ahead and had a funeral service director pick her up, so there was no autopsy.

But their mistake was in the record anyway, so we were able to find out the truth. Most people thought she had died from an asthma attack, but I saw, and I knew better. I never thought I'd witness a medical team that didn't give help. It was such a nightmare – I thought I was dreaming.

I went through all of this in a deposition with a lawyer. The EMT guy was really mean; he had anger management issues. My attorney picked up on that, and said, He's a very angry man! But nothing happened to that man.

My mom was devastated by this. She spoke at the deposition, and poured her heart out. That brought her peace. She knew the truth, but was in too much pain to talk about it. The stress from all that shortened her life.

I haven't told anyone about this for ten years, until now.

Gina's Advice: If the EMTs don't seem to be helping your family member in an emergency, call 911 again, or call the police. Act right away!

Read another story of a 911 call gone awry.

Thanks to Gina for telling her story over the phone. A fuller account can be found in the October 2004 issue of the Journal of Emergency Medical Services, in Volume 29.

Motivated to advocate for quality improvement: “Quality Care Saves Lives” Event at the Massachusetts State House

This is a transcript of my introduction this morning’s event at the Massachusetts State House:

My name is Ken Farbstein and I serve as President of the Consumer Health Quality Council.

The Consumer Health Quality Council consists of a diverse group of people who have suffered, or whose family members have suffered, health care errors. So we are strongly motivated to advocate for quality improvement and patient safety. The group has been active since 2006.

Today four Council members will be sharing their stories: John McCormick from Pembroke, Jen Tosca from Kingston, Robena Reid from Acton, and Lucilia Prates, our founder and former president, from Arlington. Their video stories serve as powerful examples of those who are taking an active role in improving health care quality in Massachusetts. I would also like to acknowledge all of the Consumer Council members who are here today. Please stand up. Thank you.

The Council Members have been working with students at Boston University School for Public Health to make these video stories. We want to thank Dan Dao, Daniel Lau, Elizabeth Romero, and Nandini Ravishankar for their work.

If you are interested in learning more about the Council, please feel free to pick up information at the table or speak with me or any other member of the Consumer Council or Kuong Ly of Health Care For All.

You will hear some individual stories today, just a few of the many – too many -- stories across Massachusetts that make clear why we need to improve health care quality.

The short videos appear here.


John McCormick's Advice: You can insist on having a more senior doctor see the patient if you are unsatisfied with the resident's care.

See another video from Health Care for All.

He'd sailed through heart surgery: Failure to rescue

Six-year-old Christian Padilla of Fort Wayne, Indiana had sailed through a successful heart surgery to correct a birth defect in 2005, only to die days later from the preventable complications that characterize a failure to rescue case.

"The nurse didn't recognize his symptoms as something of concern," said the boy's father, Jim Padilla, 38, an assistant professor at a local university. "She described him in her medical notes as 'acting fidgety.'"

In reality, Christian was unconscious and suffering seizures as a result of the brain swelling that killed him, said his father, who received a $1.25 million combined settlement from the Indiana Patient's Compensation Fund and the hospital, according to the Indiana Department of Insurance.

It's not clear whether a drug reaction or another problem caused the swelling, said Padilla, who was at his son's side, frantic, throughout the ordeal.

"We got to the point where I had asked multiple times: 'Should he be sleeping so long?'" he said. "Over and over, I was told this was normal.'"

Such a failure to make a diagnosis in time, or to provide treatment in time, is called "failure to rescue."

The nurse's failure to notice Christian's subtle but increasing symptoms of distress is a key element of this measure of how well hospitals respond to unexpected complications — or don't, said Dr. Samantha Collier, chief medical officer for HealthGrades. "As an example, somebody comes in for an elective surgery like a knee replacement and turns up with vague symptoms, like shortness of breath, and the next thing you know, somebody dies," explained Dr. Collier. "It's obvious that if you go in for a knee surgery, you shouldn't die."

The term "failure to rescue" refers to cases where caregivers fail to notice or respond when a patient is dying of preventable complications in a hospital. Between 2004 and 2006, failure to rescue claimed more than 188,000 lives, amounting to about 128 deaths for every 1,000 patients at risk of complications, according to a report from HealthGrades, a health care ratings organization. That's more than any other measure found in the 2008 report, and indeed in five consecutive annual reports by Health Grade.

Advice to family members of a hospitalized relative: Insist that a Rapid Response Team help your relative if you see them declining rapidly in the hospital.

Thanks to JoNel Aleccia for the source story in MSNBC, and thanks to Helen Haskell.

$9.8 Billion of its own cash: High price of drugs

The big news today is of Merck’s acquisition/merger with Schering Plough, for $41 billion. Natasha Singer writes in today's New York Times that "Merck will use $9.8 billion of its own cash for the purchase." Hmmm, who did all that money come from?

Linda R. has a hunch, and a personal interest. Her letter, written a few days before the Merck/Schering story:

The drug companies use the high cost of current drugs to research new drugs that aren't even necessary. It's all a big money-making scheme. It's, "Let's see if we can come up with a drug for hangnails", and then "here's how we'll market it." Then they push the idea down consumers' throats with TV and magazine ads and push them on the doctors with salesman and samples. It all fuels big drug company profits. And when Congress or anyone asks, "Why are these drugs so expensive?" The drug companies say, "It's the cost of research!" Research for what? For another sleeping pill? For another drug for toenail fungus or mood swings. How many pills do we need out there for common maladies? It's all a scam!

This is what I'd like to see done. I'd like to see a watchdog committee go in and see just how much it costs to make a variety of 2nd-tier and 3rd-tier drugs. See how much the actual cost of the drug itself is. And when we have a National Health Plan in place, the government will only pay the actual cost of the pill. Let philanthropists fund research for important, groundbreaking discoveries and cures! Let the drug companies get out there with their hat in their hand, like every one else instead of taking it out of lower income pockets.

And then there are the patent laws. Why are drug companies allowed to have 5 and 10 year patents on new drugs? Back in 2001 when I was uninsured, I had to pay the $100 for a month's supply of a drug that an insured person only had to pay $20 or less for. It was part of what bankrupted me. And now there are other ways to get prescriptions at insurance coverage cost, but are people being actively informed? About stores like Costco that have a special program for uninsured people so they can buy their prescriptions for the same price as insured people? From experience I can tell you the answer is "No." It's only becoming known by word-of-mouth. I wonder why...

This article says it all much better than I can ---- "The Truth About the Drug Companies." This article tells it all.

I understand that the government doesn't want to oversee big business to the point of screwing up the capitalist system. However, government officials need to remember what the word "government" means: "Government is the body within any organization that has the authority to make and the power to enforce laws, regulations, or rules." The U.S. government needs to step up to the plate and start making new laws and enforcing new laws that will protect the American people from greedy and disreputable capitalism that directly affects Americans' quality of life.

My apologies, but this is what gets me on my soapbox! Thanks for helping. Go get 'em! One step at a time! One law at a time!

Advice: Help to pass one law at a time.

Read a story about high drug costs.

With significant potential financial gain: Unnecessary cardiac surgery

Father John Corapi went to Dr. M. for a diagnosis, and the doctor recommended surgery. Father Corapi then got second, third, fourth and fifth opinions, all of which disagreed with Dr. M.'s diagnosis and recommendation for cardiac surgery. He was so struck by these additional opinions that he went to the FBI.

The FBI performed a three-month investigation, interviewing medical staff at the local medical center in California, other patients of Dr. M., some of his colleagues, Dr. Gerald Rogan, and outside cardiologists as far away as the Cleveland Clinic. The FBI produced a 67-page affidavit that led to a search warrant authorizing an FBI raid on Dr. M.'s office. The affidavit contained a description of Dr. M.'s interaction with patients: the doctor bullied patients, and scared them. He would consistently tell patients, many of whom had ambiguous symptoms and no history of coronary disease, that he needed to perform an angiogram to determine whether the patient required invasive treatment. (An angiogram is a diagnostic test that takes X-ray pictures of the heart arteries, highlighted by an injected dye, via a soft catheter tube that the surgeon threads into the heart from an incision in the patient's groin. )

If the angiogram failed to document treatable disease, or as was frequently the case with Dr. M., was unreadable, he would perform an intravascular ultrasound, which at the time was new, and unfamiliar to many cardiologists. By improperly setting the gain on the ultrasound too high, Dr. M. guaranteed the appearance but not the reality of significant arterial blockages. Dr. M. would then lean over the supine patient and tell him in dire tones that without immediate bypass surgery, he would die. In such a stressful situation, few patients were sufficiently confident, rational, or sophisticated to ask for a second opinion. For the few who did, Dr. M. typically referred the patient to another doctor in his practice, who would confirm the diagnosis, relying on Dr. M.'s recommendation, and perform the surgery.

The California Medical Board sought a restraining order against the two doctors, finding that:

"Both have fraudulently misrepresented the findings of tests to induce and/or scare patients into having unnecessary surgeries or interventions. At best, this can be viewed as incompetent and/or grossly negligent as well as dishonest and corrupt. [They] misled, lied to or attempted to frighten patients into consenting to invasive coronary surgical procedures, at significant risk to the patient and with significant potential financial gain."

Advice: Work to reform the payment system that rewards unscrupulous doctors for unnecessary and dangerous surgery.

Read another story about unnecessary bypass surgery.

Thanks to Drs. Gerald Rogan, Frank Sebat and Ian Grady for the source, Disaster Analysis Redding Medical Center Congressional Report, June 1, 2008, and to Helen Haskell.

An incentive to do the wrong thing: A Phenergan injection lawsuit

Diana Levine is a guitarist, age 63, living in Vermont. She went to a clinic, complaining of pain from migraine headaches. A doctor there chose to inject her with Phenergan, an anti-nausea drug made by Wyeth Pharmaceuticals. Though the drug label permitted the drug's intravenous injection, it stated that "extreme care" was needed to avoid hitting an artery, because "likely" complications included "gangrene requiring amputation."

Unfortunately Diana immediately developed gangrene, and the musician's right forearm had to be amputated. She sued Wyeth, and won. The U.S. Supreme Court upheld the decision in a ruling today, by a vote of 6 to 3.

Diana’s case is especially significant because the Supreme Court's ruling enhances the rights of injured patients to hold drug makers responsible.

This case also implicates our payment system. Doctors are paid well for administering injections, and are not paid for prescribing oral drugs, for example, that usually offer available alternatives. The reimbursement system provided an incentive to do the wrong thing, and Diana is suffering for it.

Advice: Consider a lawsuit if a medication error causes you significant injury.

Read a story about a migraine sufferer.

Thanks to Jess Bravin; and Joan Biskupic and Julie Appleby for the source articles in today's Wall St. Journal and USA Today, respectively.

Her law came too late for her: Insured medical leaves of absence

Michelle Morse was a full-time student at Plymouth State University in New Hampshire. Michelle was found to have colon cancer in 203, and her doctor recommended she take a leave of absence for chemotherapy.

But if she took a leave, she would lose her insurance. She stayed in school while undergoing her treatments, and at the same time campaigned for a law to let students stay on their parents' health insurance while on medical leave from college. Congress passed the law last year, but it came too late for her: she died in 2005.

Would it have made a difference if Michelle had been able to take a leave and focus on treatment? "We'll never know," said her mother, AnneMarie Morse.

"It was horrible," AnneMarie said of her dealings with the insurance companies. When one executive told her indignantly that the company had already paid out a lot of money for Michelle, she responded, "I would give my life for you not to have to pay one cent for my daughter."

Michelle is a hero for using her anger at the insurance system to advocate a law that now protects people in her situation.

Advice: Get busy as a citizen, like Michelle, to push the reform of our screwy healthcare insurance system.

Read a story showing the need for reform of our payment system.

Thanks to Nicholas Kristof for the source article in the March 1 issue of the NY Times.

Ten years ago, she had one year to live: Mistrust of doctors’ opinions

Dr. Abigail Zuger's story:
A patient and I have been conducting an increasingly existential dialogue on these subjects for years now – not easy to sustain in 15-minute segments, even less as we both realize we are getting exactly nowhere.

She has untreated HIV infection with an immune system now so dysfunctional that it is quite extraordinary for her to be still in the pink of health.

Which she is, no doubt about it. She feels fine. At some point in the past a health care professional hazarded that she had a year to live, and after 10 years she lost all faith in expert predictions.

From my own long experience with patients just like her, I know the very unpleasant future that surely awaits her. She has no interest in letting my memories drag her across the river. She only knows she feels fine. Furthermore, she has tried all the drugs that will change her risk, and every one of them makes her feel sick.

We have tossed this all around many times, and each time she enumerates the same paradox: I, with my gloomy warnings and my new ideas for medication, am trying to make her sick. She is determined to stay healthy.

Healthy to infect others, I point out. Healthy to leave her son an orphan. Healthy until she gets sicker than anyone needs to be.

Healthy in the here and now, she insists. Healthy not to throw up every morning, healthy enough to go to work, pay the bills and buy the kid a set of drums. Healthy to feel like herself.

Clearly, there is health, and there is health, and sometimes the twain just will not meet. Meanwhile, every time I look at her lab reports I feel a little sick.

When epidemic infection came to town in the old days, it was usually clear who was sick and who was well. Yet in the midst of New York's typhoid outbreaks of the early 20th century, one of the healthy was Mary Mallon, "Typhoid Mary," the cook who carried the germ, infected dozens of others, yet never got sick.

Health is as hard to define as love or happiness, and even harder to trap and keep.

Advice to victims of medical errors: Remember that even after you've had a doctor make a mistake, doctors are still right much more often than they're wrong.

Thanks to Dr. Abigail Zuger for the source article in the Sept. 30 issue of the New York Times.

The nurses threw him out of the room: Joyful living with Multiple Sclerosis

Debbie Purdy married well, to a joyful Cuban jazz violinist named Omar Puente. It was 1995 – the same time she was diagnosed with multiple sclerosis. She has primary progressive, rather than relaxing-remitting, MS, meaning that her condition is inexorably worsening.

They have adjusted together to the changes in her body. If she had not been in a wheelchair, if her hands had not been shaking, if she had not been speaking matter-of-factly about things like loss of bladder control, the painful swelling in her feet and how hard it was for her to brush her teeth, it would have been difficult to believe that she was ill at all. She is that joyful.

Not long ago, a team of nurses came in to install the hoist that helps her in and out of bed. Her husband Omar “was laughing,” she said. “The nurses threw him out of the room when we were trying it out, because he was acting like it was a sex toy.”

Omar says, “I’ve seen the whole process, from when she was a very strong woman with a wonderful big bottom and strong legs, to using a walking stick to using a wheelchair. She is still articulate and enthusiastic and full of life.”

Advice: Live with humor, as joyously as you can with the time you have, as Debbie and Omar do.

Read a story of a very different way a person is living fully with multiple sclerosis .

Thanks to Sarah Lyall for the source article in today’s NY Times.

Deamonte, Barack, and Valentine's Day

The first month of the Obama Administration is nearly complete, and it has been a great month for public health, with four big accomplishments.

1.Four million (or 11 million, depending on how you count it) more poor children will have health insurance, thanks to the expansion of the SCHIP program. That will save many children’s lives, ending disgraces like the death of Deamonte Driver, who died from the lack of dental and medical care.

2.More doctors will use electronic medical records (EMRs). As of now, the stimulus bill will provide $16 billion (in the Senate bill) to $17 billion (in the House bill) in incentives for Medicaid and Medicare providers to adopt health information technology, according to a comparison appearing in the online Wall St. Journal on Feb. 10. There are many likely benefits, depending on the technology. One likely result is to make test results more immediately accessible to doctors, speeding their diagnoses and shortening patients' suffering, among many other benefits. In my own case, the electronic availability of an MRI enabled my ENT doctor to promptly provide me a diagnosis and a prescription. That saved me weeks of misery until another MRI could be done (and a saving to my insurer, since the test only needed to be done once).


3.The extension of unemployment benefits will add some peace of mind for many newly laid-off workers. Reducing that stress should improve mental and physical health for many people.

4. Single working mothers, many living in or near poverty with their children, will get higher wages because of the passage of the Lilly Ledbetter Act to reduce wage discrimination. Poverty is the biggest risk factor for poor health, so higher wages will improve health for poor and near-poor families.

Advice: Be glad that our President is putting our money where his heart is.

One of those things: A staph infection after spinal fusion

A story from Jeff Knott:
My publisher tells the story of going into a hospital for a spinal fusion procedure known as a lumbar laminectomy (an open decompression). He needed help due to severe pain caused by neural impingement. The surgery is designed to remove a small portion of bone over a nerve root and/or disc material from under the nerve root, giving more space for movement.

At admission, he was in generally good health. On the morning following the surgery, the patient felt comfortable and was encouraged to see if he could sit up, which he could thanks to the morphine blocking any discomfort. However, by that afternoon he began to run a fever and began hallucinating. The nursing team was attentive and eventually called in a doctor (not the admitting physician – he had gone skiing in Colorado) to evaluate the situation. Nurses and techs drew blood and administered fever-lowering medication.

The test results came back and the doctor returned to inform the patient that he had contracted a staph infection – most likely during or just after the surgical procedure. That explained the fever, the hallucinations, the swelling and redness around the wound, and the patient's irritability.

Antibiotics were started and after four additional days in the hospital, the patient was wheeled to his car. In addition to the routine bill for the surgery and hospitalization, there was an increase in the total by four additional and unexpected days of hospitalization – none of which were caused by the patient, but surely to be paid for by the patient and his insurance company.

The patient returned to the orthopedic surgeon's office for check-ups during the weeks that followed. He met with the doctor a couple of times, discussed the success of the surgery, the reduction or near-elimination of pain, and rehabilitation. But not once did the doctor bring up the staph infection. When the patient mentioned it, the discussion was brushed off as "one of those things" that can happen in a blue moon. It was obviously an embarrassment – but it didn’t slow down the flow of patients through his office.

Advice for people who have suffered a hospital-acquired infection: Ask the surgeon what s/he would do differently next time to prevent an infection. And don't pay that part of the bill.

Read a spinal surgery error story.

Thanks to Jeff Knott for the excerpt from his new book, Navigating the Healthcare Maze-What You Need To Know, published by DC Press.

And being fed by a supermodel: Gisele Bundchen's healing touch for Tom Brady

The picture of New England Patriots' quarterback Tom Brady being spoon-fed by his supermodel girlfriend, Gisele Bundchen, was jarring. Perhaps football fans don't want to think of our injured QB as a guy who is cuddled – or coddled.

But I'm all for it. Why? Because the more Tom gets touched, stroked, and babied, the healthier he'll get.

Scientists have proven, in study after study, that touching and loving heals the body. During this important off-season, while Tom is recuperating, Pats fans should be begging Gisele to feed him. To rub his feet. Whatever nonverbal acts of affection she can come up with to make him feel all better.

Sure, it's weird to see a model pet our QB like a dog, but the next time Gisele does her doting we should cheer her on. In her own way, she's helping the Pats.

Dr. Tiffany Field, who runs the Touch Research Institute at the University of Miami, says touching is medicinal, and helps with diabetes, cancer, and asthma. "Hugging and massages and doing various forms of exercise stimulate pressure receptors," she says. "It slows the heart rate and blood pressure and the production of stress hormones."

Advice to partners of injured weekend warriors and professional athletes: Cuddle them, and coddle them.

Read another petting story.

Thanks to Meredith Goldstein for the source article in today’s Boston Globe.

The magician, not the wand: Wise use of the electronic medical record

Dr. Matthew Heller's comment:
Having been in solo practice for rheumatology for 34 years, I know that it's the magician, not the wand, that provides better health care. Although I use electronic medical records in my office, I do it in a way that does not interfere with listening to patients, making eye contact and practicing medicine in the way that I was taught 40 years ago.

It's not just privacy that’s at stake. More often than not electronic records spit out boilerplate data (often laden with errors) that get transmitted from one doctor to another completely devoid of any semblance of human interaction.

My vote is for the better practice of medicine, not the better use of computers.

Advice: Find a doctor who uses an electronic medical record as a useful tool, while preserving rapport and attention with you while in the exam room.

Read one patient’s observations on this.

Thanks to Dr. Heller for his letter to the editor, published in today’s New York Times.

And not tell us more to protect ourselves: Three families' victims of MRSA infections

The Story of Ms. A about her husband's treatment in a South Carolina hospital:
My husband was just released after almost two months in the hospital. His hip replacement was infected by MRSA at the hospital and the only way he could get the treatment needed was to remain in the hospital. When we took him back to the hospital with the first signs of infection in his incision he was not in isolation until the tests came back from the lab that it was MRSA. The nurses did not wear gowns and treated him as they did any other patient. Once the tests were known it was a whole different case. Why the hospital didn't see the need to protect all the people the moment a person comes in with a surgical infection is beyond me. I know we will worry about this infection the rest of my husband's life and we know he got it while in the hospital for a routine surgery. In the weeks I went to the hospital to visit my husband, it was scary how many isolation boxes were hanging on patient doors on the 9th floor. Even on the 3rd floor where I walked to get to the parking garage, there were lots of boxes on doors. The bills that have started coming in since we started working with the hospital two months ago are beyond what any regular person can pay. If the hospitals are the cause of spreading this infection, they should have to treat the victims for free. Good luck to Ms. Diane Parker in taking this to a higher power to stop this infection from affecting other families [by organizing a coalition in South Carolina to reduce hospital infections]. 2/3/09


The Story of Ms. B about her father's treatment in the same South Carolina hospital:
My family had the same experience with that hospital. My dad contracted MRSA after a back surgery. He battled it for a year before sadly we lost him to this totally preventable infection. There were isolation boxes on the 9th floor, but I never saw anyone take out the gowns, gloves, or masks that were in there. The doctor didn't wash his hands when coming in or leaving the room. Neither the doctors nor nurses told the family that we should be using the gowns and gloves. It was a custodial staff member that alerted us. After asking many questions, we finally had a name for the infection and realized that our dad was in for a rough ride. Although I am not a fan of lawsuits, it seems the only thing that talks in this country is money. Hopefully, an attorney will step forward and be brave enough to take a case like this. I have been unable to find one to help me hold the hospital accountable for an unnecessary death.


Crickett's story about her mother's treatment in another South Carolina hospital:
My family experienced the same thing also. Only my mother died 34 days after contacted HAMRSA , thru an intravenous [IV] line in the hospital. She had surgery to remove an area of her arm 1 inch wide and 6 inches long of all veins and tendons. On top of that was sent home with home health to show me how to care for the wound which was left open, not stitched up. She was only treated 4 days with vancomycin, which is one of the only drugs to fight infection. And sent home on bactrim. We took her to another hospital, where she was diagnosed with Septic MRSA. Why didn't the hospital tell us she was going to die, and not tell us more about how to protect ourselves from this dangerous infection?!


On Feb. 4, the South Carolina Hospital Association, Health Sciences South Carolina and Premier Healthcare Alliance announced a major statewide effort to get rid of preventable infections. They have formed the South Carolina Healthcare Quality Trust. This group is to figure out the problems and find the solutions.

Advice to people with a family member in the hospital: Ask the nurse if the hospital participates in a multi-hospital effort to prevent hospital infections.

Read another story of a serious hospital infection in a South Carolina hospital.

Thanks to Dawndy Mercer Plank for the source story, and to Helen Haskell for publicizing this.

Don't back down on disclosure: Drug companies' payments to doctors

The Boston Globe published an editorial yesterday encouraging the Massachusetts Department of Public Health to stand firm in its regulations that limit the gifts and money that drug companies give to doctors.

Calvin Timberlake would probably agree. Calvin’s story appeared in this blog here. His surgeon had invested in the manufacturer of Prodisc, and he chose to install a Prodisc in Calvin's spine to relieve his lower back pain. The Prodisc later came apart, requiring an immediate operation to remove it, and leaving Calvin permanently in pain. The surgeons who had written the medical journal articles that persuaded the FDA to approve the device had large investments in its manufacturer.

Doctors should disclose their investments to medical journal editors and to their patients, and state government regulators should insist they do so.

Advice: Ask the officials in your state government’s public health department to require disclosure of funds that doctors receive for all purposes other than direct medical care, including everything from pens and pads of paper to research funding.

Twittering an operation might seem frivolous: Detection of side effects

Part 1 of Terri’s story about her research into the treatment options she had for fibroid tumors appeared here yesterday. Here's Part 2:

During the surgery and recovery, Terri's husband used Twitter, the short-message communication service, to keep friends and family apprised of her condition. Twittering an operation might seem frivolous, but when Terri's teeth began chattering after the procedure, a friend following the updates suggested it could be a potentially hazardous side effect, tardive dyskinesia, that can occur with one of the anti-nausea drugs Terri was taking. Her husband, who had been researching that very point when the message from the friend came in, was able to get the medication changed.

Advice: Get help systematically from your network of friends when you're seriously ill.

Read a story about a friend who was helpful in a very different way.

Thanks to John Schwartz for the source article in the NY Times issue of Sept. 30, 2008.

In the sea of online hypochondria: Paging Dr. Google to get second opinions – Part 1

Terri Nelson's experience in 2008 is very different from what it might have been in 1998. Terri, who lives in Portland, Oregon, received her diagnosis on August 11. She had two weeks before a follow-up visit with her surgeon. She and her husband Stewart used the time to research fibroids and the most common treatments.

She started with straightforward information gathering, checking the articles on fibroid tumors on sites that included the Mayo Clinic and PubMed. Then she reached out to the community of people with fibroid tumors at ACOR and other sites. "Those had to be evaluated carefully to find the nuggets of valid information in the sea of online hypochondria," she noted.

Having spent many years trolling boisterous online forums, however, she had developed that essential Internet search tool: what might be called a personal baby/bathwater algorithm that helps people to sift through mountains of information to find what is relevant. She found a blog for the layperson, "Inquisitive Geek with Fibroid Tumors," that featured wide-ranging discussions that she found useful and specific to her condition.

By the time she had the consultation with her surgeon, she knew that the old-school way of dealing with her grapefruit-sized tumor was a hysterectomy. But since that can impair sexual response, among other side effects, a growing number of doctors prefer abdominal myomectomy, which leaves the uterus intact. The surgeon laid out the options and recommended that approach as well, confirming Terri’s research.

Advice for finding Internet information on your medical condition: Start with a broad authoritative source by respected clinicians, and then supplement that by finding the blog of a passionately absorbed knowledgeable person who has the condition you do.

See a short video about the need for a second opinion.

Thanks to John Schwartz for the source article in the New York Times of Sept. 30, 2008.

A healthcare Catch-22: Kidney transplant for a homeless man

Pedro Cendeno Lora, age 47, had come to the U.S. in 1995 from the Dominican Republic, and had lived here quite happily for most of that time.

But he knew something was wrong when he became too tired to keep going to work. In late 2006, his lethargy was attributed to kidney failure; by then, he was out of work, and struggling to hang onto his rooming house in Dorchester, Massachusetts. Doctors told him he needed a kidney transplant. But in an all-too-common American healthcare Catch-22, he couldn't work because of his health, and he couldn't qualify for a transplant while in danger of losing his home.

He was running out of time when Health Care for the Homeless and Boston Medical Center came together last year to save him, in two ways. First, they searched for a donor, and realized his younger brother could donate a kidney. Second, Health Care for the Homeless helped him catch up on his rent so he could have a home to recuperate in.

The transplant was performed at Boston Medical Center. Pedro and his brother were able to stay at Barbara McInnis House for the homeless for the week before to prepare for the surgery, and for a month afterward.

"America saved me," he says.

Advice: Work to expand the safety net so it's there if and when you're out of work.

Read another story about a brother’s kidney donation.

Thanks to Adrian Walker for the source article in the Boston Globe of Dec. 9.

Back at the same level: Tom Brady's hospital post-surgical infection

A few minutes before Super Bowl LXIII, and Patriots fans know that in a just world, Tom Brady should be guiding the Patriots to another Super Bowl win.

Tom, of course, suffered a season-ending injury early in the season. He had surgery on October 6 to repair his knee, with a patella tendon graft inserted to replace his torn ACL (anterior [front] cruciate ligament). His torn medial (middle) cruciate ligament (MCL) was also repaired.

Afterward, he suffered a postoperative staph infection – the most common kind of post-op infection. He was put on antibiotics, and remained on antibiotics through at least November 11. The infection was caught early, and was treated aggressively with wash-out procedures and intravenous antibiotics.

The infection has delayed the start of physical therapy to restore his range of motion, prevent the build-up of scar tissue, and protect the cartilage.

But Patriots fans can take consolation in the words of Kevin Wilk, the associate clinical director of Champion Sports Medicine in Birmingham, Alabama, who has helped more than 500 NFL players recover from ACL surgery: "He's going to make it back and play at the same level."

Advice: Bet on Tom Brady.

Read another football knee surgery story.

Thanks to Shira Springer for the source article in the Boston Globe of Nov. 11.

A badge of honor: Kidney donation

Minnesota native Anthony Thein didn't hesitate back in 1967 when doctors asked him to donate a kidney to his ailing brother. "If you think it might help somebody survive, you say, 'Yes, of course,'" Thein says.

But kidney transplants from living donors were still uncommon in the late 1960s, and the operation carried risks for both parties. Doctors didn't know whether living with just one kidney could entail long-term medical repercussions.

"Yeah, we really did something crazy 42 years ago," Anthony says today.

Perhaps not. Researchers report in today's New England Journal of Medicine that people who donate a kidney have about the same probability of survival over several decades as people in the general population. And donors seem to have adequate kidney function and even less risk of severe kidney disease than occurs in the general public, nephrologist Hassan Ibrahim of the University of Minnesota and his colleagues report.

To arrive at these findings, the researchers pored over a database of kidney transplants performed at the University of Minnesota between 1963 and 2007 and tried to reach as many of the donors as possible. Using this data and death records from the Social Security Administration, the scientists were able to asses the mortality rate among 3,698 people who gave away a kidney within that time span.

The survival curves of these donors and the general public are close, even favoring the donors slightly. And the rate of end-stage renal disease, which necessitates dialysis and can put a person on a waiting list for a new kidney, was lower among the donors than in the general population.

The researchers also randomly selected 255 of the donors to undergo kidney function tests between 2003 and 2007. The team compared those results against tests done on a group of people who had both kidneys and who matched the donors in race, gender, body weight and age.

An analysis showed the donors had acceptable measures of basic kidney functions and even outperformed the control group on blood pressure measurements, says Ibrahim.

Self-reported information suggested the donors had a slightly better overall quality of life than people in the general population.

To be eligible to donate a kidney, a person must pass a physical examination and cannot have diabetes, high blood pressure or other serious ailments.

With that in mind, it's not surprising that kidney donors would have good mortality rates and better health-related quality of life than people in the general population, say physicians Jane Tan and Glenn Chertow of Stanford University School of Medicine, writing in the same NEJM issue. "Nevertheless," they note, "it is somewhat surprising and quite reassuring that rates of end-stage renal disease were also lower in kidney donors than in the general population."

These broader findings have been reflected in a personal way in Anthony Thein's life. Now 70 and semiretired, Thein says he hasn't encountered any problems from lacking a kidney, although he does sport a sizable scar across his midsection — a testament to being among the earliest donors. Donors' scars today are much smaller.

"Actually, I'm proud of my scar," he says. "It's sort of like a badge of honor."

Advice: Consider kidney donation.

Read the appeal of a woman with kidney disease for a kidney donor. Thanks to Nathan Seppa for his article yesterday in Science News, reprinted here.

Millions of people: Martin Delaney and AIDS Activism

In the early 1980s, several of his friends became infected with HIV, and died of AIDS. Though he himself was never HIV-positive, their deaths drew Martin Delaney into the AIDS movement.

When he heard about a cold remedy, ribavirin, that was being smuggled from Mexico because it had been found to strengthen the immune system, Martin made several runs to Tijuana to get some. Soon after, he decided he could be more effective by taking political action.

He launched Project Inform, which started "medically supervised guerilla trials" – community-based studies of the safety and efficacy of drugs that did not have federal approval. It sponsored town-hall-style informational meetings around the country, and set up a national AIDS-treatment hot line.

He "challenged the research and pharmaceutical community in the earliest years of the AIDS epidemic to consult with HIV-positive patients and their advocates" about treatment options, in the words of Project Inform's current executive director, Dana Van Gorder.

Martin died on Friday at age 63, of liver cancer. Just before he died, he received the Director's Special Recognition Award for "extraordinary contributions to framing the HIV research agenda" from the National Institute of Allergy and Infectious Diseases, a division of the National Institutes of Health.

NIH Director Antony Fauci, MD, said, "Millions of people are now receiving life-saving antiretroviral medications from a treatment pipeline that Marty Delaney played a key role in opening and expanding."

Advice: Like Martin, live a life of political action to help your sick friends.

Read a very different activist’s story.

Thanks to Dennis Hevesi for the source article in yesterday's issue of the New York Times.

Remind your daughters: Mariana Bridi da Costa's misdiagnosed fatal infection

The 20-year-old Brazilian beauty queen Mariana Bridi da Costa died early this morning in the hospital. She had had a urinary tract infection (UTI), which was initially misdiagnosed, delaying the routine antibiotic treatment that probably would have saved her life.

The bacterial infection progressed rapidly, snowballing into more serious conditions. First, it spread to her blood ("septicemia"). The septicemia then caused an insufficient blood flow that triggered the quick deadening of tissue ("necrosis"), first in Mariana's hands and feet. But even the prompt amputation of her hands and feet could not save her life, as the septicemia (also called bacteremia or sepsis) apparently led to organ failure and her death.

As of now, it's not known whether she had acquired the UTI at home or in the hospital. Her boyfriend said she had felt ill in late December, perhaps from a UTI, and that her doctor had misdiagnosed the problem as a kidney stone, and prescribed medicine for that. This incorrect diagnosis evoked a wrong-drug error. The type of bacterial infection she had - Pseudomonas aeruginosa - is usually acquired in the hospital, not at home. A hospital-acquired infection, whose detection was delayed, may well have led to her death.

Mariana had been a finalist to represent Brazil in the Miss World contest.

Advice to mothers: Remind your daughters that they can prevent some UTIs by wiping themselves from front to back after using the toilet. Doctors can prevent some hospital-acquired UTIs by washing their hands before touching patients.

Read another Pseudomonas aeruginos story.

Thanks to Shari Roan for the source article in yesterday's Los Angeles Times.

Without the routine cruelty: A path to health insurance for all

From Dr. Atul Gawande's essay in the New Yorker:
I once took care of a 19-year-old college student who had maxed out her insurance coverage. She had a treatable but metastatic cancer. But neither she nor her parents could afford the radiation therapy that she required. I made calls to find state programs, charities – anything that could help her – to no avail. She put off the treatment for almost a year because she didn't want to force her parents to take out a second mortgage on their home. But eventually they had to choose between their daughter and their life's savings.

For the past year, since universal health coverage in Massachusetts, I haven't had a single Massachusetts patient who has had to ask how much the necessary tests will cost; not one who has told me he needed to put off his cancer operation until he found a job that provided insurance coverage. And that's a remarkable change: a glimpse of American health care without the routine cruelty.

Dr. Gawande mentions this patient, and the Massachusetts model of health care for all, in the context of describing how governments have generally brought about universal coverage by expanding existing programs rather than starting completely afresh. He raises the possibility of achieving universal coverage by expanding Medicare, or the Veterans Health Administration's system, or Federal employees' insurance plan, etc.

The veterans' health system offers the best starting place, for it provides what is demonstrably the highest quality of care in our country. We should expand the VHA to offer universal care for four key reasons. First, its care for patients’ chronic illnesses is exceptional. Second, it offers care across the country, in a network of 170 hospitals. Third, it uses an integrated electronic medical record, so when patients move across the country, or have medical needs while on vacation, their medical records can easily remain accessible by nearby doctors. Fourth, it is primarily a provider network, rather than a virtual insurance network, which gives it more intrinsic capability to further improve the quality of care.

We should allow the VHA to recruit more physicians so we can offer uninsured people who live near VHA hospitals the option of getting their care through the VHA.

Read a very different story from Dr. Gawande.

Thanks to Dr. Atul Gawande for the source article in the Jan. 26 issue of the New Yorker.

The inauguration of Pres. Obama: A new era of responsibility - aleinu

In his inaugural speech, the President called on us to "begin again the work of remaking America." He later commented,

"What is required of us now is a new era of responsibility – a recognition, on the part of every American, that we have duties to ourselves, our nation, and the world, duties that we do not grudgingly accept but rather seize gladly, firm in the knowledge that there is nothing so satisfying to the spirit, so defining of our character, than giving our all to a difficult task."

I've been giving my all to this difficult task, as have many readers. Now, in our healthcare and patient safety realm, there is both an encouraging early sign and a special sense of urgency.

Encouragingly, in the economic stimulus package, the version being considered by the U.S. House of Representatives includes $20 billion for health information technology. The President has called for making electronic medical records widely available to make our healthcare safer and less expensive.

Sen. Teddy Kennedy experienced a seizure during his lunch with Pres. Obama. Kennedy is terminally ill with brain cancer, and he has focused the rest of his life on achieving national health insurance. This underlines our sense of urgency: the time is now. As Rabbi Hillel said, "If not now, when?"

Indeed, many Jewish services end with the song Aleinu ("it is our duty," or literally, "it’s on us"). We can make that our personal closing benediction to the inauguration of our Community Organizer in Chief.

Advice: Host a house meeting on health care reform, and summarize the story for www.change.gov

Read another story from a speech by Barack Obama.

Miracle on the Hudson: Lessons for Hospitals

It seems miraculous that US Airways Flight 1549 from New York City landed without loss of life in the Hudson River. The Jewish Talmud says, "Expect miracles, but don't count on them." The airplane designers apparently relied on this in their design of key safety features which enabled a skilled airplane crew to land the plane safely. Seven of their life-saving practices reveal life-saving suggestions for hospitals.

1. Captain Chesley Sullenberger III remembered from his training that if a plane has to ditch, it should be done near a vessel. So he landed the plane near a boat that he saw on that stretch of the Hudson. Other boat captains saw the first boat captain head toward the plane, and they followed, rescuing the passengers promptly.

Lesson for hospitals: Train doctors and nurses on what to do in case of errors as rare as needing to ditch a plane in the water.

2.The plane's first officer, Jeffrey Skiles, was in control of the plane at take-off. But as soon as the plane ran into the flock of birds and both engines quit at about the same time, the more experienced Captain Sullenberger announced, "My aircraft," using the standard phrasing and protocol drilled into airline crews during training. "Your aircraft," Mr. Skiles responded. The airline industry explicitly trains pilots how to manage the change of command of the plane, and the appropriate terse ways to communicate that. This hand-off of authority was clear, immediate, and was automatically documented in the black box recorder. Trainers also teach crew members to routinely "say back" oral orders to ensure they have been correctly understood.

Lessons for hospitals: Create ways to hand off responsibility for patients that are clear, immediate, efficient, reliable, and verified.

3. After Captain Sullenberger took command of the plane, he, First Officer Skiles, and the air traffic controller discussed returning to La Guardia Airport, but decided against it. The pilot didn't decide alone; the three people took time to have a brief discussion, even in the midst of their extremely urgent looming disaster. Airlines have long trained pilots to perform such "crew resource management" (often now called "crisis resource management" in healthcare).

Lesson for hospitals: Train your clinicians to quickly, promptly and routinely discuss critical options for treatment, while driving out subordinates' fear that a higher-ranking surgeon or doctor will punish them for speaking up.

4. A passenger in the exit row was able to correctly remove the emergency exit door because he had taken a minute at that time to "readthelaminatedsafetycardofinstructionsintheseatpocketinfrontofyou." The airline had taken the time to prepare instructions for this very rare event of a water landing and place them where they could be snatched and understood promptly.

Lesson for hospitals: Patients are your partners. Help them by placing a laminated card of instructions in patients' rooms on how and when to call a Rapid Response Team. (It's now a state law in Massachusetts, and perhaps other places, for hospitals to have Rapid Response Teams to reply promptly upon the unexpected sudden deterioration in a patient's condition.)

5. After Captain Sullenberger took command of the plane, he set his co-pilot to work at moving through a three-page checklist of procedures for restarting the plane's engines. Note that the detailed checklist had been developed well in advance precisely for this exceedingly rare event. It was in the cockpit, i.e., it was immediately accessible, and didn't require the co-pilot to have memorized the procedures.

In this case, the checklist wasn't helpful, since it was intended for planes in distress at much higher altitudes, which allows for more time to restart the engines.

Lesson for hospitals: Sometimes you'll get lucky, and the patient will live despite your lack of a checklist. But you should, of course, have checklists for handling the most common errors. Expect laws soon to require the checklists.

6. The plane's force at impact would determine how many would live or die. It was critical to slow the plane. The pilots had to lower the flaps (movable devices on the wing) to slow the plane. But the flaps run on hydraulic power, driven by the now-useless bird-stuffed engines. The Airbus A320 has a "ram air turbine," essentially a little propeller, that drops down into the wind automatically in certain conditions, and produces electricity to provide the energy that allowed the crew to lower the flaps. With this automatic backup at work, the crew was able to slow the plane enough to make what felt like a hard landing, rather than a crash.

Lesson for hospitals: You may have generators that come into automatic use when the electricity fails. Perform a Failure Mode Effects Analysis to identify the failures that are most common and life-threatening, and ascertain where you need other automatic backups.

7. The Army Corps of Engineers is now searching the Hudson River for an engine, which may provide evidence on whether the plane really hit the birds. In effect, the government is helping to determine the cause of the accident.

Lesson for hospitals: Outsiders may be willing to help you find the causes of accidents. Let them partner with you.

Read another story about a pilot.

Thanks to Matthew Wald and Al Baker for the source article in yesterday's NY Times.

A state senator named Barack Obama: Disclosure of hospital infection rates

A night-shift nurse slipped into Jeanine Thomas' hospital room and whispered, "I don't know how you're taking this so well. If I were you, I'd be curled up in a ball crying."
The remark mystified Jeanine. She'd had ankle surgery, and yes, there had been complications. But she thought she was recovering. Was there something she didn't know?

In November 2000, Jeanine, then a 45-year-old antiques dealer, had slipped on ice and shattered her left ankle outside her suburban Chicago home. But days after surgery at her local hospital, the skin surrounding the incisions turned black, and her body swelled. Doctors wanted to amputate, but Jeanine, an avid tennis player, refused to let them.

Then, a friend told her about her mother's battle with MRSA, an antibiotic-resistant germ. Their symptoms matched. Jeanine confronted a doctor and learned the truth: She, too, had MRSA. Only now did the nurse's comment make sense.

Jeanine asked doctors how many people get MRSA. She was met by silence. "That's when I knew ― a light bulb went on in my head," she says. "They don't want anyone to know about this."

Jeanine epitomizes a revolt in health care. A growing number of consumer advocates ― many bound by ordeals with MRSA, or methicillin-resistant Staphylococcus aureus ― have vowed that if the U.S. hospital system will not heal itself, they will do it.
Five years ago, not a single state forced hospitals to reveal how many patients contracted infections while under their care. Now 25 states have some form of "report card" disclosure that can make hospitals more accountable.

After her ankle healed enough that she could walk, Jeanine cobbled together bits and pieces of information about a germ that few seemed to know about.

In 2003, she helped muster support for a bill requiring Illinois hospitals to disclose infection rates. A state senator named Barack Obama co-sponsored the legislation, which passed that year.

Thanks to Helen Haskell, and Seattle Times reporters Michael Berens and Ken Armstrong for the source story.

Dear Mr. President-Elect: Patient Safety Legislation

President-Elect Barack Obama
The White House
1600 Pennsylvania Ave., NW
Washington, DC 20500-0001

Dear Mr. President-Elect,

The Consumer Health Quality Council is a unique grassroots organization. The Council consists of individual consumers who have experienced poor quality care, either directly or through loved ones, and who are motivated by their experiences to advocate for better quality care for all residents of Massachusetts.

The Council would like to advocate for certain provisions that we strongly hope to see in the new administration’s healthcare agenda. These provisions became state law in Massachusetts after we advocated for healthcare quality improvement legislation during the most recent session of the Massachusetts legislature. We chose the following areas of focus based on our experiences: reducing the rates of healthcare-associated infections and other serious preventable errors, promoting consumer empowerment, and improving patient and provider partnerships and communication. The following provisions are now law in Massachusetts:

1. Hospitals will no longer be reimbursed for care associated with serious preventable errors;
2. Hospitals are required to establish rapid response methods to allow for immediate assistance if a patient is deteriorating;
3. Hospitals must set up patient and family advisory councils; and
4. The Department of Public Health will publicly report hospital-specific rates of healthcare-associated infections and serious reportable events.

We are hopeful that quality improvement and cost containment and others will not only improve care for all residents of Massachusetts but will help to make healthcare reform a success. You can read the specific language for these provisions in the corresponding Sections 51H, 53E, and 53F of Chapter 305 of the Massachusetts General Laws here.

We urge you to emphasize the importance of access to high-quality healthcare for all Americans. Attached to this letter are several stories we have written on how medical errors have affected us, our families and caregivers, and our communities. These stories communicate the very real threat of errors happening in anyone regardless of income level, race, or educational level. We share these stories in the hope that they lead to changes in the healthcare system so that what happened to us will not happen to someone else.

Please let us know if we can provide any assistance. If you have any questions or would like any information from us, please contact Deborah Wachenheim, Health Quality Manager at Health Care For All (617-275-2902), or Ken Farbstein, President of the Consumer Health Quality Council (781-444-5525).

About once a week: Hospital checklists

Today's Boston Globe ran a headline story about the use of checklists by hospitals:

In one instance, Dr. Gawande told the team before beginning surgery that his patient's adrenal tumor (over his kidney) was stuck to a major vein. As a result, the anesthesiologist brought more blood into the room to prepare for the possibility of major blood loss, one of the items on the checklist.

"The patient lost huge amounts of blood in under a minute," Dr. Gawande said. "He was saved by the fact that the anesthesiologist had the blood right there."

Dr. Gawande said that in his own operations at a Harvard teaching hospital in Boston, the checklist catches a potential problem about once a week.

Dr. Atul Gawande was the lead author of a paper published yesterday in the New England Journal of Medicine. The study of eight hospitals found that simple checklists used before, during and after surgery roughly halved the number of deaths of patients, and reduced the frequency of complications by more than a third.

Advice: Find out if your hospital uses surgical checklists.

Read a very different story by Dr. Gawande.

Thanks to Liz Kowalczyk for the source article.

She was visiting: Medical tourism to Israel

Caroline Ardeeser, a 78-year-old retired Florida resident, decided to forgo Medicare and hospitalization in the U.S. and pursued surgery in Israel. She was visiting Israel earlier this year, when her knees "gave out." Rather than return home, where she had stopped paying health insurance premiums, she chose to have the reconstructive surgery performed at the Sheba Hospital in Israel. The 90-minute surgery and a week's stay in the hospital cost her $16,000, which she had in savings.

She says that at her age, she cannot obtain private health insurance in the U.S. And even if she could, she estimates that with the co-pay, the surgery and the rehabilitation at home could have cost three times as much. She plans to have surgery on her other knee soon and is recuperating in a rented house in the West Bank city-settlement of Ariel. "I had a most positive experience here," she says.

Much of the medical tourism industry in Israel depends on brokers like Ira Nissel, who handled Caroline’s case. An immigrant from New York who came to Israel in the late 1970s, he is an entrepreneur who formed IMS Global four years ago to promote medical tourism to Israel.

A survey in 2008 by Deloitte Center for Health Solutions found that in 2007, 750,000 Americans traveled overseas for medical treatment. Spokespersons for the Israeli government said about 20,000 foreign tourists were served in Israel in 2007.

Advice to people lacking insurance: Consider the merits of getting care abroad – or of getting a U.S. president who favors universal health insurance.

Read a story about medical tourism.

Thanks to Netty Gross for the source article in the Oct. 13 issue of the Jerusalem Report.

We may as well milk it while we can: Zyprexa and prescription drug reform

Here's a victim’s name and face for the prescription drug reform issue. It's a story of cherry-picked studies, aggressive marketing to doctors by pharma salesmen bearing gifts, and an ultimately fatal side effect of Zyprexa:

His prom photo showed he was a handsome teenager with a messy mop of dark brown hair. He went to college to study political science. But within the next year or two John Eric Kauffman developed mental illness--a severe form of bipolar disorder. In 1992, in his late twenties, he suffered his most severe psychotic breakdown. Over the next 8 years, he didn't suffer any psychotic breakdowns, thanks to lithium and Stelazine. After that, a psychiatrist changed his medications, John stopped taking them, his condition worsened, and he was hospitalized. In the hospital he was given Zyprexa in a relatively high dose. He then remained on Zyprexa for 6 years, and gained 100 pounds, developing heart disease. John's weight gain probably contributed to her son's death in his forties from an irregular heart beat, according to a forensic pathologist. (NY Times, 1/5/07). More of John's story can be found here.

Drug maker Eli Lilly had done studies. But tens of thousands of lawsuits contend that Lilly did not fully disclose risks it discovered during studies conducted to get FDA approval for Zyprexa, risks that became more apparent in the years after the drug hit the market.

The preapproval studies lasted six weeks, not nearly time for diabetes to manifest itself, plaintiffs' attorney Joseph Saunders says, but there were red flags. Some 29% of participants gained significant amounts of weight. Rapid weight gain puts people at higher risk of developing diabetes.

Lilly paid $1.2 billion to settle 30,000 claims. And Lilly has more than private attorneys to worry about. Nine states have sued, claiming the company illegally promoted unapproved uses of Zyprexa and downplayed its side effects. The states want to be reimbursed hundreds of millions for Medicaid dollars they paid for Zyprexa.

In 2003, the FDA directed that not only Zyprexa, but all atypical antipsychotics carry a warning about increased risk of hyperglycemia and diabetes.

Lilly continued to market its drug as more effective but no more dangerous than its competitors. Only in Fall, 2007 did the company agree to change Zyprexa's label to state that its tendency to increase blood sugar levels, another diabetes risk factor, is higher than its competitors.

Asked Saunders: "Why did it take 10 years to warn people about something they knew from their clinical trials?"

In the meantime, Eli Lilly marketed Zyprexa aggressively to doctors. Here's a confessional story of one Zyprexa salesman, Shahram Ahari:

Salesmen wooed doctors with free samples, treated them to expensive dinners and paid them to give speeches at seminars.

"It practically sold itself," said Ahari, who sold Zyprexa in New York from 1998 to 2000.

The gravy train hit some bumps. Reps started hearing from doctors concerned about patients "blimping up." Competitors hammered them on it, derisively twisting Zyprexa's generic name, olanzapine, into "olanza-pig."

The Zyprexa sales reps eagerly awaited word from Lilly's brand team on how they should deal with the weight/diabetes issue. Ahari says this is what they came up with: Tell doctors to instruct patients to drink a glass of water before and after they eat, to suppress appetite.

"We'd have to do it with a straight face," Ahari said, "and after a while, it just became uncomfortable."

With doctors he knew well, he said his pitch was blunt: "Would you rather have a skinny, unwell patient or a fat, stable one?"

Doctors started reporting patients developing diabetes. "That was a big, scary thing," Ahari said. If the FDA required that Zyprexa carry a black box warning about diabetes, "it would have been death, market-wise."

He says sales reps were instructed to deflect the issues of weight gain and diabetes. "We were taught to downplay it and negate it, or to change the topic."

Lemons, the Lilly spokeswoman, says the company can't be certain what every sales manager told their sales reps, but "that has never been our corporate policy." She questioned Ahari's objectivity because she said he is now a paid witness for trial attorneys taking on pharmaceutical companies. Ahari says he was a paid witness in just one case, which was about preserving the confidentiality of physicians' prescribing patterns.

Like many critics, Ahari came to feel Zyprexa was effective, appropriate for many people. But he believed that the brass at Lilly downplayed the weight and diabetes problems because the clock on the patents was ticking. The thinking was, "we may as well milk it while we can." (St. Petersburg Times, 12/16/07)

Advice: Urge your government health watchdog agencies to require doctors to disclose their research funding, and require pharma companies to allow doctors to publish whatever results they see fit.

Thanks to Helen Haskell, NY Times reporter Alex Berenson, and St. Petersburg Times reporter Robert Farley.

No need for a bag: Informed consent for treatment of rectal cancer

Denise Grady's story:
Six years ago, a relative of mine found out that she had rectal cancer, and would need surgery, radiation and chemotherapy. She lives in a small town, and consulted a local surgeon at a community hospital.

He was pleasant and kind, and clearly explained her condition and the operation he would perform. He was also painfully honest, and said that because the tumor was large, he doubted that he would be able to save the sphincter muscles that make bowel control possible. She would very likely need a colostomy, a procedure to divert wastes out through an opening cut in the abdomen, and would have to wear a colostomy bag for the rest of her life.

She thought it over, and decided that, instead, she wanted a doctor who operated on patients like her all the time. She found a surgeon who specialized in rectal cancer, and today she's in good health, with no need for a bag.

Practice makes perfect for surgeons too. Hospitals and surgeons that perform a higher number of a certain kind of procedure are better at it. It’s not just the surgeon's skill; outcomes are better if nurses, intensivists, respiratory therapists, and physical therapists are more experienced at treatment of a given condition.

This goes beyond "informed consent," which sometimes refers only to a perfunctory explanation and an unquestioning patient. Patients should insist on a "well-informed consent" based on their active weighing of pros and cons.

Advice: If surgery is really necessary, have it done at a high volume hospital by a surgeon who has performed many of the procedures you need.

Read a story about well-informed consent.

Thanks to Denise Grady for the source article in today's NY Times.

No ice for his swelling: Medical travel insurance

Mary Billard's story:
My husband Barry and I took an hour’s cab ride through steep and winding hills, past the undeveloped, Eden-before-the-fall landscape near the beach town of Senggigi, Indonesia.

We were wandering down the main street, reading menus, when the lights went out. A few more steps and, suddenly, Barry disappeared from my side. I looked down into an open concrete drainage ditch about four feet deep, and there he was at the bottom, getting to his hands and knees.

It was so dark I used a cell phone light to see a bleeding wound on his forearm. Then he felt a pain in his ankle. Over the next eight hours, we learned his ankle was fractured.

We went to the nearest clinic. Barry called the number on the back of his American Express card, connecting him to the Global Assist Hotline to find out what kind of medical help they could provide and to explore our trip back to the United States.

In the subsequent hours, we were on the phone almost constantly as Barry lay in a bed in the bare-bones clinic – with no ice for his swelling. We reached doctors in New York, family and others, and American Express, which monitored the diagnosis and care provided. (After we got home, I got a phone bill for $903.)

A decision was made: Barry would have the local doctor put a cast on his broken ankle, and then we would travel back home to New York City. He would not have surgery in rural Indonesia.

How to get him home? As premium American Express card members, we are eligible to receive emergency medical transportation assistance. But a fractured ankle does not justify getting an air ambulance. (Even if we had a medical travel insurance policy, it wouldn't cover an air ambulance, because this injury didn't require hospitalization.)

It's possible that a travel insurance policy would cover a ticket to fly home promptly, depending on medical necessity.

Next trip, we are definitely buying a comprehensive trip insurance policy. And bringing a flashlight.

Mary's advice: Before embarking on an overseas vacation, travelers should check their medical policy to see what is covered.

Read a very different medical story of a tourist to Asia.

Thanks to Mary Billard for the source article in today's New York Times.

Our hearts go out to them: Bias in pharma-funded research for psychoactive drugs

In the final months of Rebecca Riley's life in Hull, Massachusetts, a school nurse said the little girl was so weak she was like a "floppy doll." The preschool principal had to help Rebecca off the bus because the 4-year-old was shaking so badly.

Rebecca — who had been diagnosed with attention deficit hyperactivity and bipolar disorder, or what used to be called manic depression — died Dec. 13, 2006 of an overdose of prescribed drugs. Rebecca was found dead on the floor of her parents' bedroom wearing only a pink pull-up diaper and gold-stud earrings, on top of a pile of clothes, magazines and a stuffed brown bear.

According to the medical examiner, Rebecca died of a combination of Clonidine, a blood pressure medication Rebecca had been prescribed for ADHD; Depakote, an antiseizure and mood-stabilizing drug prescribed for the little girl's bipolar disorder; a cough suppressant; and an antihistamine. The amount of Clonidine alone in Rebecca's system was enough to be fatal, the medical examiner said.

The two brand-name prescription drugs are approved by the Food and Drug Administration for use in adults only, though doctors can legally prescribe them to youngsters, and do so frequently.



Rebecca's death has inflamed a long-running debate in psychiatry. Some psychiatrists believe bipolar disorder, which was traditionally diagnosed in adolescence or early adulthood, has become a trendy diagnosis in young children.

"As a clinician, I can tell you it's just very difficult to say whether someone is just throwing tantrums or has bipolar disorder," said Dr. Oscar B. Bukstein, a child psychiatrist and associate professor at the University of Pittsburgh.

Marcia Angell's comments are particularly insightful. They'll appear in the forthcoming NY Review of Books in the issue of Jan. 15, 2009:

Some of the biggest blockbusters are psychoactive drugs. The theory that psychiatric conditions stem from a biochemical imbalance is used as a justification for their widespread use, even though the theory has yet to be proved. Children are particularly vulnerable targets. What parents dare say "No" when a physician says their difficult child is sick and recommends drug treatment? We are now in the midst of an apparent epidemic of bipolar disease in children (which seems to be replacing attention-deficit hyperactivity disorder as the most publicized condition in childhood), with a 40-fold increase in the diagnosis between 1994 and 2003.

Take the case of Dr. B., widely reported in Boston recently, about a professor of psychiatry at Harvard Medical School and chief of pediatric psychopharmacology at a major Harvard teaching hospital. Thanks largely to him, children as young as two years old are now being diagnosed with bipolar disorder and treated with a cocktail of powerful drugs, many of which were not approved by the Food and Drug Administration (FDA) for that purpose and none of which were approved for children below ten years of age.

Legally, physicians may use drugs that have already been approved for a particular purpose for any other purpose they choose, but such use should be based on good published scientific evidence. That seems not to be the case here. The doctor's own studies of the drugs he advocates to treat childhood bipolar disorder were, as the New York Times summarized the opinions of its expert sources, "so small and loosely designed that they were largely inconclusive."

In June, Senator Grassley revealed that drug companies, including those that make drugs he advocates for childhood bipolar disorder, had paid Dr. B. $1.6 million in consulting and speaking fees between 2000 and 2007. Two of his colleagues received similar amounts. After the revelation, the president of the hospital and the chairman of its physician organization sent a letter to the hospital's physicians expressing not shock over the enormity of the conflicts of interest, but sympathy for the beneficiaries: "We know this is an incredibly painful time for these doctors and their families, and our hearts go out to them."

Rebecca's case has lots of blame to go around, and many factors were involved. At this time, we can be sure of few things. Three things seem clear:

1. The consulting and speaking fees seem like a lot of money – enough to influence the doctor's judgment.

2. In the gray zone of the proper selection and dosage of psychoactive drugs for children, where the FDA has not specifically approved their use, we need research to be as pure, as unbiased, as possible.

3. Drug companies now own the right to cherry-pick the findings and the studies they fund, and they do so.

My opinion is that we must make doctors fully free to publish the results of their studies, and let the chips fall where they may. If so, more negative results of the usefulness of psychoactive drugs will probably be published. Currently, the drug companies often suppress such findings, e.g., as was done in half of studies of anti-depressants, according to a January 2008 article in the New England Journal of Medicine. If all such studies are published, doctors will be more skeptical of the value of these drugs, and are likely to prescribe them less frequently. We have to ask ourselves whether insisting, through government regulation, that doctors have this freedom to decide what to publish, and whether requiring doctors to disclose their research funding sources and amounts, would have saved the lives of Rebecca and other children.

Advice: Try to tighten your state’s requirements for disclosure of drug research studies and free rights for doctors to publish all research they perform.

Thanks to Helen Haskell and to Marcia Angell. Thanks also to the Associated Press for their article on March 23, 2007.