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.