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.

For more than two years: Genetic tests and personalized medicine

For more than two years, Jody Uslan had been taking the drug tamoxifen in hopes of preventing a recurrence of breast cancer. Then a new genetic test suggested that because of her genetic makeup, the drug wasn't doing her any good.

"I was devastated," she said. She stopped taking tamoxifen, and is now evaluating alternative treatments.

Experts say most drugs, whatever the disease, work for only about half the people who take them. For the others, their genetic makeup makes the drug ineffective, e.g., because the person may lack an enzyme to process the drug appropriately. The hope of "personalized medicine" is that doctors will be able to consider the likely effectiveness of a drug for a particular patient in light of that person’s relevant genes, in deciding which drug to prescribe.

Scientists are learning about a growing number of genetic markers that determine the likely effectiveness of particular drugs. Some genetic tests are available, many at a cost of several hundred dollars. The Food and Drug Administration has formally recommended genetic tests to guide the selection or use of some drugs, but has not yet made formal recommendations on many others.

Advice: To avoid the side effects, cost, and nuisance of using certain drugs unnecessarily, talk to a genetic counselor if you use Herceptin (trastuzumah), Erbitux (cetuximab), Vectibix (panitumumah), chemotherapy for breast cancer, Tamoxifen, Ziagen (abacavir), Camptosar (irinotecan), Tegretol (carbamazepine), Coumadin (warfarin), or Celebrex (celecoxib). Ask the counselor whether you should have a genetic test to determine the drug’s likely effectiveness for you.

Read another story about the value of genetic counseling.

Thanks to Andrew Pollack for the source article in today's New York Times.

TBI is what I'm supposed to be doing: A brain injury survivor

On March 11, 2002, a freak accident on an airport shuttle bus changed Peggi Robart's life in an instant. A piece of ceiling or sign – Peggi can't remember which – came loose, hitting her in the head and knocking her unconscious.

There was no gaping head wound, and no blood. But the next day, at work, it became apparent that she was not herself. She had been an educator, lecturer, and published author before the accident. But afterward she stuttered greatly simply in trying to finish a sentence. The familiar streets of Boston became confusing.

"I'd get in the shower and ask, 'What am I doing here?,'" she says. "You had to write everything down. I had to put the labels on all my cupboards. You go to the supermarket holding onto your list for dear life."

She started attending a support group run by the Brain Injury Association of Massachusetts, based in Westborough. Since then, she has become an activist. Many survivors report difficulties in finding providers who recognize and understand injuries like hers. So she has been reaching out to providers, by attending conferences and networking to let them know the full range of treatment options for people with traumatic brain injuries.

Peggi sees these efforts as instrumental in her healing. She says she is at peace with the fact that she will never be equal to her "before" self. Yet she has made significant improvement: she no longer stutters; she needs fewer PostIt notes to carry on her life, and it's easier for her to drive a car.

"Part of getting better is that I want to contribute, I like to help. Apparently, TBI is what I'm supposed to be doing."

Advice to people with severe injuries: Helping others with your condition might help you heal.

Read another story of a TBI survivor who is helping others.

Thanks to Megan McKee for the source article in yesterday's Boston Globe.

Deemed to have the power of judgment: A difficult heart transplant decision

Hannah Jones, 13, is not afraid of dying — she is afraid of spending her remaining days in a hospital bed. In a case that raises a host of medical and ethical issues, the British teenager from a small town northwest of London has won a battle to refuse a heart transplant operation.

That decision by British medical authorities has ignited a debate over whether children should have the right to refuse potentially lifesaving medical treatments or if health authorities have an obligation to intervene.

Hannah, from Marden, 145 miles from London, was diagnosed with leukemia at age 4. Doctors later found a heart defect. In eight years, she has had chemotherapy and nearly a dozen operations.

"I've been in hospital too much — I've had too much trauma," she said.

Hannah's story surfaced when her parents complained about medical officials who threatened to force her into a hospital.

"They phoned us on a Friday evening and said that if we didn't take her in they'd come and take her. We still refused to take her," said her mother, Kirsty Jones.

A social worker was then sent to interview the teenager about her refusal to have a heart transplant to treat her cardiomyopathy, a serious disease where the heart muscle becomes swollen and sometimes fails. The social worker backed Hannah's decision.

Hospital officials said it is standard procedure to make sure both the child and the parents understand the consequences of any decision.

"Clearly the welfare of the child is paramount," said Dr. Sally Stucke, a pediatrician with the Herefordshire Primary Care Trust where Hannah was receiving treatment. "Pediatricians will always consider the child's best interests at all times and this would include the child's medical, emotional and psychological well-being."

"No one can be forced to have a heart transplant," she said.

In Britain, children younger than 16 aren't automatically considered legally competent to make decisions about their health care. Still, British courts have said that a child's decision can be valid if they have "sufficient understanding and intelligence to enable him or her to understand fully what is proposed."

According to the Department of Health, when a child is considered competent and refuses treatment, their decision will be respected. When a consensus can't be reached, the patient can be overruled by either parents or guardians, or in more unusual circumstances, by the courts.

Dr. Tony Calland, who chairs the British Medical Association's medical ethics committee, told BBC radio that a 13-year-old like Hannah, supported by her parents, should be "perfectly capable" of making such a decision.

"Decisions to refuse life-prolonging treatment are always extremely difficult and emotive," he said. "What is paramount is that decisions are made in the best interests of the patient."

Heart transplants are risky operations for any patient. Transplants often require patients to be on lifelong anti-rejection medication to prevent their body from attacking their new heart. The medicines sometimes have side-effects, which make the body more susceptible to dangerous infections.

"I just decided there were too many risks, and even if I took it there might be a bad outcome," Hannah said. "There is a chance that I may be OK, and there's a chance that I may not be as well as I could be, but I'm willing to take that chance."

In the United States, the issue of refusing treatment is generally decided on a case-by-case basis, said Dr. Jerrold Eichner, chair of the American Academy of Pediatrics committee on hospital care.

He said the ideal was when a child, their parents and their doctors agreed as to how to proceed. Disagreements can be handled by hospital ethics committees or, in extreme situations, by the courts — though Eichner said that was rare.

In Switzerland, anyone deemed to have the "power of judgment" can decide whether to receive treatment or not, and there is no formal minimum age. If parents contest their child's decision, then the minor can go before the state guardianship authority to ask for a ruling.

Michelle Salathe of the Swiss Academy of Medical Sciences said it was inconceivable that a doctor would force a child to undergo a heart transplant against the wishes of both the patient and the parents. In Austria, children under 14 are not allowed to refuse medical care, but 14- to 18-year-olds can. And under Greek law, parents have the final say on medical treatment until their child turns 18.

Advice to those advised to have major surgery: Look into it thoroughly, and make your decision with your family.

Read another story about a difficult surgical decision. Thanks to our source, Jennifer Quinn of the Associated Press.

If that little girl in the picture can do it: Forgiveness after a severe wartime burn

Perhaps the most unforgettable Vietnam-era photograph shows a screaming, naked nine-year-old girl, afire and fleeing from a napalm attack. She is now a grown woman.

Kim Phuc's story of her long road to forgiveness:

On June 8, 1972, I ran out from Cao Dai temple in my village, Trang Bang, South Vietnam; I saw an airplane getting lower and then four bombs falling down. I saw fire everywhere around me. Then I saw the fire over my body, especially on my left arm. My clothes had been burned off by fire.

I was nine years old but I still remember my thoughts at that moment: I would be ugly and people would treat me in a different way. My picture was taken in that moment on Road No. 1 from Saigon to Phnom Penh. After a soldier gave me some drink and poured water over my body, I lost my consciousness.

Several days after, I realized that I was in the hospital, where I spent 14 months and had 17 operations.

It was a very difficult time for me when I went home from the hospital. Our house was destroyed; we lost everything and we just survived day by day.

Although I suffered from pain, itching and headaches all the time, the long hospital stay made me dream to become a doctor. But my studies were cut short by the local government. They wanted me as a symbol of the state. I could not go to school anymore.
The anger inside me was like a hatred as high as a mountain. I hated my life. I hated all people who were normal because I was not normal. I really wanted to die many times.

I spent my daytime in the library to read a lot of religious books to find a purpose for my life. One of the books that I read was the Holy Bible.

In Christmas 1982, I accepted Jesus Christ as my personal savior. It was an amazing turning point in my life. God helped me to learn to forgive — the most difficult of all lessons. It didn't happen in a day and it wasn't easy. But I finally got it.
Forgiveness made me free from hatred. I still have many scars on my body and severe pain most days but my heart is cleansed.

Napalm is very powerful but faith, forgiveness and love are much more powerful. We would not have war at all if everyone could learn how to live with true love, hope and forgiveness.

If that little girl in the picture can do it, ask yourself: Can you?


Kim Phuc has started a foundation, Kim Foundation International, which aids children who are war victims. She is a patient advocate hero.

Advice: Live like Kim Phuc.

Read a story about the ways faith and prayer help healing.

Thanks to Anne Penman of the Canadian Broadcasting Corporation for the source story, rebroadcast today on National Public Radio.

He was more concerned about my health: Elective breast surgery

Knowing that her mother had had breast cancer at 49, Kerry Herman of Brooklyn, New York had her first mammogram at 38, just before her first full-term pregnancy. She was told her breasts were cystic and very dense but otherwise healthy. When she stopped nursing her daughter, she had a second mammogram, at 41, and then annually after that.

She was in her early 50s when the mammograms started to show calcifications. By then sonograms were readily available to supplement her breast exams. At age 55 her mammograms revealed a different pattern of calcifications in her left breast. Though the radiologist and surgeon told her they did not think this was worrisome, a biopsy was recommended and done in three locations. It revealed very early cancer called ductal carcinoma in situ, or D.C.I.S.

Faced with removal of her left breast and biopsies of the right, she said in an interview, "I decided to be more proactive. After consulting my husband, who said he was more concerned about my health than my breasts, I had a bilateral mastectomy and reconstruction."

"I have never regretted my decision [about the elective surgery], she said. "For me, having to go through this every year and wondering if I would beat the Grim Reaper was agony."

A friend of hers with the same findings chose to wait and see, Kerry said. She ended up with an invasive cancer that had spread beyond the breast by the time of her next exam.

Advice to people with a friend at risk of breast cancer: Help her consider all the options, and be supportive of her tough choice.

Read about another woman's very difficult decision on elective surgery

Thanks to Jane Brody for the source article in the New York Times of Oct. 21.

They regarded me as a rare pelt: Prostate cancer treatment

Dana Jennings's story:
I have prostate cancer, but it sometimes seems as if…the cold intent of many people was to translate me into an abstraction, to deny my damaged and tiresome flesh-and-bloodness.

My insurer did not want to hear that my radical open prostatectomy last July would demand a higher level of care because previous abdominal surgery had created a tortuous internal topography of scar tissue and adhesions. My insurer, despite the insight and strong protests of my doctors, kept insisting that any knife would do. Was Sweeney Todd available?

And some doctors I spoke with before my surgery – not my current team at the Cancer Institute of New Jersey – seemed to regard me as a rare pelt, a fascinating wrinkle in their volume business in prostates.

Cancer is a crucible in which we patients are somehow, we hope, reborn. It's a rite of passage as resonant as any other – a graduation, a baptism, a wedding – and should be treated that way. Some days, maybe because I'm still undergoing treatment, I don't want to hear about another stat, another study, another hare-brained cure. How about a smile, a kind word, and a hug?

The bewilderment, shame and fear often stun men into a passive and depressed silence. Nurses and doctors say that many men barely speak during treatment and office visits, letting their wives, partners or children do the talking. They are quiet waiting room wraiths, perfecting their thousand-yard stares. And if they speak, it's in murmurs, as if cancer required whispers. No one scratches you behind the ears and says "Good boy" for being mute.

Because I had surgery at a teaching hospital, I woke up each morning to the rustle and jostle of a gang of residents. Young crows with bright and clever eyes, they flapped into my room – almost like Keystone Kops in white coats – to take a poke at the old crow.

I don't want to be too tough on them, because they're only kids, and they have so much to learn in such a short time. But to most of them, I suspect, I was just a case, one of each morning's many medical exhibits.

I preferred the humane, morphine-woozy middle-of-the-night conversations with the aides who took care of me. The guy who talked about superhero movies after checking out the Iron Man figurine my sons had given me. And the guy who, as he gently drained my ileostomy pouch – not related to my cancer – told me how he'd had to wear a temporary pouch after he'd been shot when he was young and stupid.

Dana's Advice: To keep from being reduced to a cipher, a mere "case," you need to be conscious and verbal. As a patient, when you don't speak, when you try to take on the cool and detached manner of a doctor, all you become is "meat," quiet meat.

Read a story about compassionate doctors.

Thanks to Dana Jennings for his source article in the December 16 issue of the New York Times.

He's now a normal little boy: Cord blood donation

Happy Chanukah to our Jewish friends – tonight is the first night of the holiday. Jews celebrate the miracle in which a small amount of oil burned for eight full days, long enough to illuminate their temple restoration work.

Today's blog post tells of the vastly disproportionate restorative effect of a small amount of a very different fluid – a modern miracle. And it even gives you a holiday gift suggestion; read on.

Jack’s story:
Jack was born a healthy little boy but at around six months old he developed a simple cold. During the day he appeared to have recovered from his cold but at night he couldn't seem to shake off a persistent cough. Jack was admitted to hospital where blood tests revealed he was suffering from Severe Combined Immunodeficiency (SCID). SCID is a rare, inherited disorder causing a severe abnormality of the immune system, making it difficult for the body to fight infections. It can be fatal if left untreated.

Upon diagnosis, Jack was transferred immediately to the intensive care unit at Great Ormond Street Hospital in London, where they began the search for a stem cell transplant – Jack's only chance of survival. A perfect match to Jack's tissue type was found with a cord blood donor and on November 7th 2003, Jack received his life-saving cord blood transplant.

Steve and Ruth, Jack’s parents, said, "Looking at Jack now, you'd never know he'd once been so ill. He's now a normal little boy who goes to playgroup and plays with his toys. The cord blood donor gave us the chance of life for Jack and we will be forever grateful."


Ken's advice for an inexpensive, meaningful and readily available last-minute holiday gift: If you're having a baby, donate his or her umbilical cord blood. If you're not, call the Red Cross at 1-800-GIVE-LIFE (1-800-448-3543) to schedule a blood donation by you and your family.

Read a story about a man who survived with the help of numerous blood transfusions.

Thanks to the British National Health Service Cord Blood Bank for the source story on their web site.

The humble pinkie has earned my respect: Finger surgery & finger therapy

Dana Scarton's story:
Last April, I tripped while jogging and my 132-pound frame crashed onto the bone at the base of my right pinkie, a bone the width of a pencil. It snapped in the metacarpophalangeal, or MCP, joint, where the finger links with the hand.

Five months later, my finger would not bend unassisted. I could not make a fist, swing a tennis racket with control, or securely grasp a dumbbell or the handle of a vacuum cleaner. Because the injury occurred in my dominant hand, writing was cumbersome.

Repairs to a broken small finger can involve pins, srews, and plates. Eight days after my fall, two pins were inserted through the MCP joint during outpatient surgery, then a cast was applied from fingertips to elbow.

Twelve days later, the cast was removed and physical rehabilitation began. I had never heard of finger therapy, but it exists, and it's painful.

Treatments include heat, ultrasound, neuromuscular stimulation, splinting, and manual exercise.

I got therapy quickly but was assigned a therapist who was too timid to manipulate my finger. By the time I located a competent replacement, my finger was rigid, and scarring appeared to be well underway. My finger was stuck.

In October, I underwent flexor tenolysis, in which the surgeon meticulously freed the tendons. The day after the surgery, I started physical therapy. Earlier this month, I completed the treatment, and my finger now bends with ease and my hand strength has returned.

And the humble pinkie has earned my respect.

Dana's advice: It's of paramount importance to begin physical therapy promptly after surgery, if needed, to prevent scar tissue from proliferating and stiffening the joint.

Read a story about the value of good physical therapy.

Thanks to Dana Scarton for the source article in the Dec. 16 issue of the New York Times.

But I am living in a new world: Accepting multiple sclerosis

Ruth Just's story:
I have had multiple sclerosis (MS) for 35 years. I have lost one ability after the other. I am now completely dependent on the care of other people.

Over the years I have learned that although I can't choose not to have it, I can choose my attitude about living with the disease.

The first thing I must do is accept MS. I must accept it not just once but over and over again. Whenever anger, grief and envy rise in me – when I see what other people can do and what other people have – I must remember that I have decided to accept MS.

When my whole family goes to Germany and I have to stay home, I must remember my decision to accept MS. Every time I have to spend several months in bed healing a pressure wound and think what fun it would be to go on a bike ride with my sisters, I must remember my decision to accept MS.

I struggle and I groan under the weight of this responsibility. But I am living in a new world. New opportunities abound. And I'm amazed to find that I feel very thankful for this new world.

MS has created a special bond between my husband and me. He has stayed with me and offered me his love and support through all these years. Would I have seen the fine mettle of this man were it not for MS?

Many of the people who take care of me are new immigrants from African countries. Getting to know these people has been the most enriching experience of my life. They are part of my new world. We encourage each other, and our friendships are rich.

My diminishment has also made me a member of the MS community. The many fine people I have met inspire me with their courage. We share each others' joys and sorrows. I need these people and they need me.

Advice to people with such diminishments from a chronic illness: Read the book that has guided Ruth: On Hallowing One's Diminishments, by John Yungblut.

Read another multiple sclerosis story.

Thanks to Ruth Just for her source article in the November/December issue of Neurology Now.

Like a genie liberated from a bottle: A stroke of luck

Here is an excerpt from an interview of Jill Taylor by Mark Matousek:

In her best-selling memoir, My Stroke of Insight, Harvard-trained brain researcher Jill Bolte Taylor, age 49, tells of the rare form of stroke she suffered in 1996. It shut down the left hemisphere of her brain, where language, logic and linear thought are based. For months she was unable to walk, talk, read, write, or recall the events of her life. Remarkably, this shut-down, and the silencing of mental chatter, left her in a state of bliss. After eight grueling years of rehab, she regained full brain function, yet could still access, at will, what she describes as a state of complete peace and well-being.

Q. Can a person tap into this bliss without suffering a stroke?
A. Absolutely! When you're really paying attention to the richness of the present moment, that's right-minded awareness. The left hemisphere is preoccupied with past and future, projecting fears, contemplating ideas that aren't relevant to the here and now. Once you realize you have these two different brains, you can learn to choose, moment by moment, how you want to live. Of course, you do need the push as well as the pause to function properly.

Q. The "push as well as the pause"?
A. I use the tools of the left hemisphere to push into the world, but as soon as it becomes stressful, I can feel that in my body, and I switch to the right hemisphere to pause. I may prefer the pause because it feels better. I'm more joyful, cooperative. People like me better. As I recovered my skills, I consciously chose not to let that left-brain circuitry dominate again. Stress is a frame of mind. If I'm in traffic and there's no solution in sight, I relax and enjoy the few moments I have. Standing in line at the store, I observe rather than engage. You can say, 'If I pull the plug on this circuit, I don't have to think [stressful] thoughts anymore.'

I feel like a genie liberated from a bottle.


Indeed, the long-haired blond medical school professor looks the part of a genie….

Advice: Prof. Taylor has used her disease to cultivate a higher form of consciousness. She teaches others about this in her courses, and by writing a book. That makes her a patient safety hero. Learn from her example.

Read another stroke survivor’s story.

Thanks to Mark Matousek for the source story in the November/December 2008 issue of AARP magazine.

If David could speak from his grave: Regulations on drug companies' gifts to doctors

David Olson's story appeared here more than a year ago.

Officials in the Massachusetts Department of Public Health are now writing regulations about the disclosure of gifts that doctors get, e.g., from drug companies, according to an article by Liz Kowalczyk in the Boston Globe of Dec. 6.

If David could speak from his grave, he might want his voice heard loud and clear on this. A drug company was paying David's psychiatrist thousands of dollars for participating in a drug study. After David's death, the state medical board criticized the doctor, concluding that he had "failed to appreciate the risks of taking Patient 46 off Clozaril, failed to respond appropriately to the patient's rapid deterioration and virtually ignored the patient's suicidality." It's hard to avoid concluding that the payment of thousands of dollars for recruiting each of a number of patients into the drug trial had affected the doctor's judgment.

Worse, this was no "bad apple." The doctor was the president of the Minnesota's psychiatric society.

Officials in Massachusetts are now considering whether doctors must disclose payments for research and research-related activities. Note that, whatever they decide, doctors will be free to receive these payments. The issue at stake is only whether patients will be able to find out about it.

Advice: Work to ensure that doctors disclose the sources of their money.

Read a story about a different conflict of interest by a doctor.

She was pregnant when her insurance ran out: The 60th Anniversary of the United Nations' Universal Declaration of Human Rights

Her father had worked in the Archway cookie factory in northern Ohio for 24 years. Starla Darling, a 27-year-old mother of a young boy, had worked there for eight years. Archway provided excellent health benefits for her through Blue Cross Blue Shield. Starla became pregnant again. Several months later, on Oct. 3, she and the other factory employees received a letter from the owners of the company – an equity firm in Greenwich, Connecticut: the factory would close; their jobs were being eliminated; and insurance benefits would expire on Oct. 6.

"When I heard that I was losing my insurance," Starla said, "I was scared. I remember that the bill for my son [Colt]'s delivery in 2005 was about $9,000, and I knew I would never be able to pay that by myself." So she asked her midwife to induce her labor two days before the insurance expired. "I was determined that we were getting this baby [Kathryn] out, and it was going to be paid for." Starla rushed to the hospital, took a medication to induce labor and then had an emergency Caesarean section.

The insurer denied her claim, leaving her with more than $17,000 in medical bills.

Many people in Starla's situation can maintain their health benefits through a provision in COBRA (the Consolidated Omnibus Budget Reconciliation Act of 1986). Unfortunately, because the Archway employees' group health plan no longer exists, that is not an available option for her. In effect, the COBRA section of the safety net has a hole that the 275 factory workers fell through.

Starla's story is especially poignant because today is the anniversary of the UN's Universal Declaration of Human Rights, which draws from the US Constitution, and particularly from the Bill of Rights. Article 25 states:

"Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control. Motherhood and childhood are entitled to special care and assistance."

Advice to citizens: Fight to get access to affordable care – a universal human right - for people like Starla, Colt, and Kathryn.

Read another story of unaffordable care.

Thanks to Robert Pear for the source story in the Dec. 7 issue of the New York Times.

George Morrison: A fatal patient fall

George Morrison died on Nov. 17 from a fall in the hospital at age 89. He had been the US Navy commander of the fleet during the Tonkin Gulf incident that led to the escalation of the Vietnam War. He is the father of the late Jim Morrison, the lead singer of the Doors.

Advice to people with an elderly family member in the hospital: Ask the nurse if your family member is at risk of falling, and what can be done to prevent a fall in the hospital. Hospitals often have protocols to reduce the chance of a fall for at-risk patients. The drugs that many elderly people take sometimes have dizziness as a side-effect.

Read a story of successful fall prevention.

Thanks to William Grimes for the source story in today's New York Times.

For the long and painful process of being angels: Gratitude for family caregivers

As a 75-year-old mother living alone in Boca Raton, Florida, and with my son, a computer research scientist, living in Olympia, Washington, I found it eye-opening to read "More Men Take the Lead Role in Caring for Elderly Parents" [in the New York Times].

Although I am physically fit with no major medical problems, the time will come when I need help.

But men caring for their elderly parents does not necessarily begin when debilitation sets in. My son has been my sole financial caregiver, when I have needed it, for more than 15 years, and if and when I have physical needs, I would guess he'd be there for me then also.

But it was only after reading Peter Nicholson’s perspective in the article that I realized what my son may go through: "As a teacher, he could measure his contribution by the students' progress. But with his mother, he can only watch her decline." And, "there is the lingering sense that whatever they do is not enough."

Perhaps mothers and fathers, before they grow into senility, should write a letter to their prospective caregiver, son or daughter, expressing gratitude for whatever decisions and actions they may, or may not, in the future, take in their long and painful process of being angels.

A thank-you letter in advance might ease the torment of one's beloved offspring.

-Malka Kornblatt

Read a story about tough love by a family caregiver.

Thanks to Malka for the source, the letter she wrote to the New York Times editor, published today.

The calming presence in the middle of a storm: A breast cancer patient navigator

Chris Ross is a 52 year old tutor from St. Andrews, New Brunswick, Canada who found a lump in her breast; she then had a biopsy that confirmed cancer. "I remember my first meeting with Wendy [Cyr]," says Ross. "My family physician had referred me to the breast clinic at St. Joseph's Hospital and I met with Wendy and my surgeon. There was a lot of information to take in, but Wendy had prepared a complete package explaining everything I was about to go through. I knew immediately that she was going to help me get through things; that she would be a terrific support. She has a way about her, and I just knew."

"Wendy has literally been there for me every single time I've reached out to her," says Chris. "And there was a lot of reaching out! Wendy really personalizes her approach. She helped lessen my worries and understand what to expect. I think she has a tough job – but she just knows how to interact with people, how to reach people."

Wendy can connect newly diagnosed breast cancer patients with a variety of people and resources they might need. "Dealing with a breast cancer diagnosis is complex,” she explains. "Every patient is different; some need financial assistance, some need couples counselling, others have transportation issues or need prosthetics or wigs. There are so many things, outside of their treatment, that can present as they navigate through treatment and recovery. I try to act as a consistent presence. I want our patients to know that if they call me, I will be there to assist them in whatever way I can, and I will arrange contact with the appropriate people."

Chris has completed her treatments and is cancer-free, but she is still in regular contact with Wendy. "I just love knowing that she’s there. Not a day goes by when I don't wake up and think about cancer. But Wendy keeps a close eye on me; if I call her she's right there for me to do whatever she can."

Advice to women with breast cancer: Find a navigator like Wendy.

Read another patient navigator story.

Thanks to Erin Barnes of Atlantic Health Sciences Corporation for the source story in the December issue of Hospital News.

His nine patients already were seated: Shared medical appointments

When Dr. Eugene Lindsay arrived to see his 4:30 appointment on a recent Thursday, his nine patients already were seated on folding chairs arranged in a semicircle around a table of snacks. For the next 90 minutes, he examined them, one by one, discussing their personal medical details out loud.

Dr. Lindsay, a cardiologist and CEO of Harvard Vanguard Medical Associates, now sees patients only in such groups, called "shared medical appointments."

"It was fabulous," said Nicholas Poly, an 80-year-old retired engineer. "I have problems similar to what other people have. I get to hear their questions too, and that's good."

Walter Kelly, on the other hand, attended two group visits, and then said he would rather see Dr. Lindsay individually if that were an option. Walter, age 89, had begun seeing Dr. Lindsay five years ago, after he got a pacemaker for his heart murmur.

The groups attempt to increase the satisfaction of patients and doctors by allowing more time in the visit, at the expense of privacy and modesty.

For the group appointment to work, additional staff and privacy and confidentiality policies are needed. A medical assistant takes vital signs and gives immunizations privately, in a nearby room. A nurse wrote patients' questions on a white board in the conference room used for the visit. Patients can talk to the doctor privately if they have questions they don't want discussed publicly, e.g., about sexual problems.

My hunch is that, as in group therapy in the behavioral health world, much of the clinical success of a group depends on the similarity of patients in the group.

Advice to people with delayed individual medical appointments: Ask your doctor about shared medical appointments.

Read a very different group visit story.

Thanks to Liz Kowalczyk for the source story in yesterday's Boston Globe.