The Impact of Medical Error on Family Members: A study

Sherry Worsham, a graduate student at Harvard, is conducting a study on the impact of medical error on family members. She is looking for adults with a family member who experienced an injurious medical error between Jan. 1, 1999 and Jan. 1, 2009 to answer a 30-minute online survey. You can learn more about it here; type in CAT as the password.

Advice to injured patients and their family members: Look for opportunities to tell your story.

Thanks to Helen Haskell of Mothers Against Medical Errors for passing this on.

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.

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.

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.

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.

If he'd give me a few good years, I'd work on hospital-acquired infections

Bill Percival of Greenville, South Carolina picked up five staph infections while in a hospital for cancer treatment. As he clung to life, he made himself a promise.

"I told my doctor that if he would give me a few good years, I'd spend them working on hospital-acquired infections," said the 64-year-old retiree.

He kept his word. Since his recovery, he has spent the past few months attending meetings of a group overseeing the reporting of such infections.

On Friday, the S.C. Department of Health and Environmental Control released its first report showing rates at hospitals around the state for two types of infections — those associated with the placing of a catheter deep into major blood vessels, and those associated with surgical sites. In this first report, the latter category includes only heart-bypass surgeries and hysterectomies.

DHEC will collect more data and will issue another report later this year. Other procedures will be added to the reports over time so the public can have an idea of how a hospital is doing overall.

"In the long run, we hope that we get the reports to the point that they are a useful guide to healthcare consumers so that you can look and see where you're more likely to be safe if you have to go in a hospital," said S.C. consumer advocate John Ruoff, who lobbied for the infection-reporting legislation.

"People need to be knowledgeable about this, and if these reports can increase public awareness of the danger of health care-associated infections, antibiotic-resistant infections in hospitals and in the community, that is a big help," said Helen Haskell, who helped form Mothers Against Medical Error after her son died in a hospital.

Sen. Ralph Anderson, D-Greenville, lead sponsor of the infection-reporting bill, said the requirement will get hospitals to work harder to lower infections.

Dr. Shawn Stinson, who is in charge of clinical quality and patient safety at Palmetto Health, said, "I have kids, and if they get sick and end up in somebody else's hospital, I want zero."

Advice: Join the efforts of citizens in many other states to file and pass state legislation to require the reporting of hospital-acquired infections.


Browse for related stories in the index at the very bottom of this page, or see a short video of one person’s hospital infection story.

Thanks to Czerne Reid for the source story in today's South Carolina state.com.