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Sunday, June 5, 2011

A true community: At the 30th anniversary of the AIDS epidemic

Today is the 30th anniversary of the announcement of the first deaths from what was later termed AIDS. On June 5, 1981, the Centers for Disease Control published the first report on the epidemic in its Morbidity and Mortality Weekly Report. Now, 30 years later, AIDS is a chronic disease that people live with for decades, with a variety of medicines and lifestyle changes.

Randy Shilts traced the early years of the epidemic in And the Band Played On, an encyclopedic account of the players and the politics. By the four-year mark, he said, the San Francisco gay community had mobilized to fight the epidemic. Numerous AIDS-related organizations had persuaded thousands of local gay men to staff information hot-lines, raise funds for AIDS services, and volunteer to help the stricken. Gays had continued to gain in political strength. At awful cost, they had forged a true community, with a shared sense that they wanted that dream to survive.

Gays' initial efforts to organize had some missteps. For example, Gay Men's Health Crisis had continual internal battles over whether to clearly state how gay men’s sexual practices contributed to the spread of AIDS. There had been great debate over whether their first mass mailing should show the word "gay" in the return address of the organization, in the spring of 1982. Their first newsletter in July 1982, the first nonscientific publication about the epidemic, presented different views on risk reduction.

But they kept at it, and they grew. By August, GMHC had 300 volunteers to provide buddies offering practical services to AIDS victims. By the end of October, they had gotten a meeting with New York City Mayor Ed Koch's liaison to the gay community, marking the first official attention to the epidemic by the city government. By the end of 1983, GMHC had coordinated $3 million worth of volunteer time, and was providing clinical services to about 50 people a week. It was then the only AIDS education program in New York City.

Still, its progress was fitful, and painfully slow. It remained very difficult to get the attention of government officials, until Rock Hudson, a popular actor, died of AIDS. Yet eventually, AIDS activists spurred the more rapid testing of drugs and the expenditure of substantial government research funding. These contributed to the development of AZT and the cocktail of AIDS drugs that were found capable of holding the disease at bay.

Advice to patient safety advocates and activists: Let's learn from the success and setbacks of AIDS activists, and celebrate their success.

Read Chapter 7 of my book, about the ways some patient advocates heroes are building our movement.

Saturday, June 4, 2011

The Big Short and Inappropriate Eye Surgery

In The Big Short: Inside the Doomsday Machine, Michael Lewis insightfully dissected the reasons for our financial meltdown. He pinpointed the role of perverse incentives, illustrating his point with a healthcare story:

"Warren Buffett had an acerbic partner, Charlie Munger....If you wanted to predict how people would behave, Munger said, you only had to look at their incentives....Dr. Mike Burry agreed. [He believed] even in life or death situations, doctors, nurses, and patients all responded to bad incentives. In hospitals in which the reimbursement rates for appendectomies ran higher, for instance, the surgeons removed more appendixes. The evolution of eye surgery was another great example. In the 1990s, the ophthalmologists were building careers on performing cataract procedures. They take half an hour or less, and yet Medicare would reimburse them $1,700 a pop. In the late 1990s, Medicare slashed reimbursement levels to around $450 per procedure, and the incomes of the surgically minded ophthalmologists fell. Across America, ophthalmologists rediscovered an obscure and risky procedure called radial keratotomy, and there was a boom in surgery to correct small impairments of vision. The inadequately studied procedure was marketed as a cure for the suffering of contact lens wearers. 'In reality,' says Burry, 'the incentive was to maintain their high, often one-to-two-million-dollar incomes, and the justification followed. The industry rushed to come up with something less dangerous than radial keratotomy, and Lasik was eventually born.'"

Read a story in Chapter 7 in my book, about my own decision on elective surgery.

Thursday, May 26, 2011

After everyone had left: Choosing an Emergency Room

The day after my daughter's Bat Mitzvah in Boston, after everyone had left, my mother asked me if I'd bring her to the Emergency Room. She'd been having pain radiate down her neck. She'd waited until then to ask because she didn't want to ruin my daughter's special day. I wanted the best care for her, and wanted her to get it quickly. She wanted to catch a train to NYC to see an old friend. I called 2 E.R.s to find out how long she'd have to wait. The shorter wait was at a very small community hospital in our suburban home town. I asked the E.R. for their FAX number, and in the car on the way, I called my mother's doctor's office in Atlanta and asked them to FAX her problem list and medication list to the E.R. in Boston.

When we got to the E.R., the problem list and medication list were already there, and they quickly got her in to see a doctor. They gave her an EKG, X-rays, and blood tests to rule out a stroke. And they arranged a specialist at a nearby Harvard teaching hospital to see her on a TV screen - a quick telemedicine consult.

They ruled out a stroke, gave her some quick education about the problem they'd discovered, so she WAS able to catch her train in time. The lessons?: Get an advocate who can put you first. Choose your E.R. Get them the critical information they need.

The stories in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, come from my personal experiences in my family, my professional work as a hospital consultant, and research for my blog. There are stories of famous doctors who've been patients, and what we can learn from them. There are stories about the health crises of celebrities and public figures, and what we can learn from them.

I've been working for 15 years as a consultant in helping hospitals prevent medical errors, and improve the quality of care. When my father-in-law died from a medical error in 2002, it changed me. I later began writing stories to educate and empower and warn people in Patient Safety Blog. So my interest was first professional, then very painfully personal, and then professional in a different direction, as a patient advocate.

Now my work enables people to partner with their doctors, to get the best patient-centered care.

Monday, May 23, 2011

The doctor is in your home: A medical clinic in public housing

Thomas Rhoe and his neighbors used to get an ambulance trip to the Emergency Room for common urgent medical problems, even for colds. Now he'll be able to take the elevator downstairs to an in-house clinic for treatment when needed.

Dr. Jeffrey Brenner of the Institute for Urban Health at Cooper Hospital in Camden, New Jersey had looked at the reasons why so many of Northgate II's residents used Emergency Rooms and hospital care so much, costing $12 million dollars over the last six years. He learned that few of the senior and disabled residents had access to primary care. He founded the Camden Coalition of Healthcare Providers, which worked with Camden Churches Organized for People, whose interviews of 50 tenants revealed the residents' access and transportation problems. Their work resulted in a partnership with Reliance Medical Group, which plans to open the medical office in June. The office will have three exam rooms, and will be staffed by a nurse practitioner or doctor. Spanish-speaking staff will be available.

Read about other innovative healthcare practices in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

Thanks to Claudia Vargas of the Philadelphia Inquirer and the CCOP News, the sources of this story.

Tuesday, May 17, 2011

Four people in my family: Testimony on payment reform legislation

Testimony at the Massachusetts Statehouse, May 16, 2011
I'm Ken Farbstein, past President of Health Care for All's Consumer Health Quality Council. Thank you for the opportunity to tell you about four people in my family, in stories that are in my new book.

A surgeon once told me I should have Lasik eye surgery. When I probed to learn more, she said I'd probably still need to wear glasses afterward. I said No. Another time, an ENT surgeon said I should have sinus surgery. I looked into it carefully, and then I said No. Instead, both times, I shared in the decision-making by reading, and asking questions about the effectiveness and the alternatives and side-effects. Then I chose non-surgical alternatives that were less costly. If patients can share in the decision-making, they'll make better informed choices, and sometimes they'll decide against surgery – which could save money for the whole system.

And near the end of life, a lot of people would choose hospice care, like we chose for my father, who was then in the final stages of Parkinson's Disease. That was better for him, and for us, and it must have actually saved money for the taxpayers too.

My very active Aunt Anne had always lived alone, in Denver, far away from the rest of our family. So she didn't have the family support that helps keep people healthy. She didn't like doctors much, but sometimes she'd see a doctor, just to get a prescription. Perhaps if her primary care provider had had a patient educator on a medical home team, they could have worked out some kind of agreement with her about regularly taking her medication. If so, it[s possible she could still be alive. She died from a complication of untreated diabetes.

My uncle Leon in Florida had a Type A personality. He loved to eat. I doubt he got much exercise. Over the years he developed heart disease, and after he retired to Florida, had multiple stents inserted by the hospitals there. If the system had paid his healthcare providers to keep him healthy, that could have moderated or prevented the coronary artery disease and his fatal heart attack.

So in my family, patient empowerment would have helped. Transparency would have helped. A public health focus on prevention would have helped.

I think many people have the same experiences as my family has had, but I think they happen so often that most people don't even notice them. There are so many people - maybe some in your family? -with diabetes, high blood pressure, asthma, or a substance abuse disorder, or a person who smokes, or drinks more than they should, or weighs more than they should, or doesn't exercise enough. Shouldn't the payment rules encourage providers to keep your family healthy?

The payment rules create a very subtle current that carries us in the wrong direction, so that providers and consultants who want to improve prevention have to make their way against the current, so they can't make much headway. Please fix the rules.

Thursday, May 12, 2011

After his rocky rehabilitation: Baseball star Kendrys' Morales surgery decision

Los Angeles Angels first baseman and superstar Kendrys Morales was just way too happy, and you would be too. Leading the team last season with 11 homers as of May 29, he had just hit a game-ending grand slam home run, and basked in the cheers of the crowd as he jogged around the bases. At the end he joyfully took a huge leap, landing on home plate. And wrecking his left ankle, his livelihood for more than a year, and maybe his team's chances for a future pennant.

The fracture healed fully, but degenerative cysts and scar tissue developed. "Kendrys has worked as hard as anybody in coming back from a serious injury, and it hasn't worked," said the team's medical director, Lewis Yocum.

"I wasn't ready to have surgery again, but this is the best path for the team and myself," the slugger said, in explaining the decision to undergo surgery again. He and the team's General Manager, Tony Reagins, announced the decision after the team gave up on his rocky rehabilitation.

The medical director said recovery from the surgery should take at least six months, but could change depending on the nature of the procedure, which has not yet been scheduled.

Morales had a team of advisors that included the medical director and General Manager, among others, who helped him make the treatment decision. He and they took the decision seriously, giving it much thought. First he chose a non-surgical route of rehabilitation, i.e., physical therapy and exercises, and tried his best to make that work. He was aware that the decision affected more than himself alone.

Advice to people who've suffered a severe injury: Like Morales, think carefully beforehand about surgery with a team of advisors, considering the effects on those around you. Work hard at self-care if that’s an option.


Read more about the surgery decision in Chapter 3 of my book, which you can get at Amazon. Thanks to the Associated Press for the source story, as in today's online version of USA Today.

Wednesday, May 11, 2011

They claimed the NHS would have killed me off: Stephen Hawking on universal health care

Stephen Hawking, the eminent physicist and 40-year survivor of Lou Gehrig's Disease:
A statement in the United States press in summer 2009 claimed the National Health Service in Great Britain would have killed me off, were I a British citizen. I felt compelled to make a statement to explain the error. I am British, I live in Cambridge, England, and the National Health Service has taken great care of me for over 40 years. I have received excellent medical attention in Britain, and I felt it was important to set the record straight. I believe in universal health care. And I am not afraid to say so.

See Chapter 9 on living with chronic illness, in my new book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment. Thanks to Claudia Dreifus for the source interview in Tuesday's New York Times.

Wednesday, May 4, 2011

Patient Activists: Swimming Uphill

Three of the best things about Boston occur within a three-week period every springtime: the Boston Marathon, the Walk for Hunger, and the herring run in Weymouth. In each, tens of thousands come together for a single crazily ambitious purpose. Whether they're running 26.2 miles, walking 20 miles for a charitable cause, or swimming 78 feet uphill through fish ladders to spawn, their raw effort and grit are hugely inspirational.

I watched the Boston Marathon again this year, from a vantage point near the top of Heartbreak Hill. The Kenyans and the ordinary shlubs, the blind runners, the wheelchair racers, the runners with artificial legs. I didn't see Dick Hoyt, the 70-year-old father who runs behind his wheelchair-bound adult son Rick, though I read that they, too, finished their 29th Boston Marathon. (Fourteen years ago, when I ran the marathon, my seven-year-old son, seeing me at Mile 24, almost four hours into the race, said, "Daddy's gonna win." Right.)

Of the three, the herring provide the most apt metaphor for patient activists. We're all small fry. The odds seem daunting. But we swim uphill relentlessly: it's what we do. We gotta spawn more of ourselves; that's what we live for.

The game warden told me that once a day or so, when the density of herring becomes crowded enough, they suddenly surge forward en masse over the next ladder. We activists need to keep growing a critical mass, for the same purpose. So, tell your lagging friends to jump in; the water's fine!

For inspirational human stories of patient activist heroes, see Chapter 12 of my book, Getting Your Best Health Care: Real World Stories for Patient Empowerment.

Thursday, April 21, 2011

Dousing the fire: Resolving the many causes of high weight gain

Dr. David Edelson describes one of his best patients:

She had a whole series of issues: sleep apnea [blockage of the airway, cutting off breathing for 20 seconds or more], hypothyroidism [a slowing of bodily processes due to an underactive thyroid gland], insulin resistance [misuse of the insulin produced in the body], binge and impulse eating. She wasn't exercising and was slightly depressed; she had a whole spectrum of different issues.

One by one, we worked through them, both with lifestyle changes and others. In our practice we have a gym with a personal trainer, so she'd work out with him/her two days a week. We have a nutritionist, who put her on a low-carbohydrate, higher omega (heart-healthy) fat diet. She'd been a terrible carb addict, and was pre-diabetic, with metabolic syndrome. For her, eating our Western high-starch, high-fat diet is like throwing gasoline on a roaring fire.

By getting her to eliminate all these white starches, and eat more whole grains, healthier grains, fish, avocadoes, olives, etc., that almost instantly turns off the metabolic syndrome, instantly dousing the fire. It got her metabolism back on line, and her carb cravings under control. The exercise and diet got her to burn her mesenteric (belly) fat. That began the process of getting those issues under control.

Then we added other things: nutritional products to fight the insulin resistance like high doses of fish oil, an herbal product with chromium, and cinnamon, a good insulin sensitizer.

Initially, we started with some medications to tip the energy balance to the right direction. We put her on a combination therapy of low-dose Phentermine and Topamax (that combination is now in development as a single drug called Qnexa). We use that in people with very strong eating urges, and binge-eaters, to help control their eating impulses and reduce their appetite. We also put her on Metformin, which is for people with diabetes and metabolic syndrome, a pre-diabetic condition which she had. That brought the insulin resistance under control.

With the exercise, the diet, the supplements, and stress management, she turned her life around, and adopted better behaviors. We have a Reiki master who does a lot of natural stress reduction, who did weekly sessions with her for a while. That's a cross between hypnosis and energy healing, so people can learn to manage their stress and bring stress out of the body, liberating the internalized stress.

She had sleep apnea, and was a terrible sleeper. She'd stop breathing 50 or 60 times an hour! Her oxygen was in the low 70s; it should be 98%. It was like standing on Mt. Everest without oxygen. That put a huge strain on her body. It even causes weight gain, because it affects a lot of hormones like ghrelin, leptin, and growth hormone secretion; they all get adversely affected.

By treating her sleep apnea with a CPAP machine [providing continuous positive airway pressure], she got normal sleep patterns, which turned her metabolism back on, and gave her more energy during the day. It's classic, like with a car with a lot of different parts that are failing, so you change the filters, tighten the belts, and align everything so it can run properly again.

Now, we can reduce her medications. She has lost 65 pounds, and is close to her ideal weight, with the lifestyle changes fully in place to maintain her weight where it is. She has been exercising to build lean muscle tissue, which has raised her basal metabolism. Now she's burning calories 24 hours a day, so we can wean her off the medications.

My complaint about the diet industry is this: They tell people they can do something on a short-term basis and lose weight permanently. There's a lot of magical thinking going on, since without changing behavior, lifestyle, or identifying the underlying medical causes of weight gain, 98% of dieters regain the weight within two years. A crash diet or drug or supplement is not going to create long-term weight loss. It will get short-term effects, but then the person will regain the weight, and then some. This is the basis of yo-yo dieting.

It's like stretching a rubber band: you can pull on it temporarily, but when you release it, it'll snap back. That's the set point theory: our bodies become set at a certain weight level. The only way to get long-term results is to relocate the set point. As you stretch the rubber band, you take what it's attached to and move it to a new position. This can only be accomplished by finding out why each individual gained the weight in the first place. Then you can address the specific causes, such as lost lean muscle mass, insulin resistance, sleep disorder, depression, injuries, hormonal imbalances…whatever has moved the set point to this new higher position.

So no one practitioner can effect long-term success with weight loss. At HealthBridge, we have an entire team, including medical doctors, sleep disorders experts, a nutritionist, personal trainers, a physical therapist, chiropractor and acupuncturist, a hypnotist and Reiki master, each experts in addressing a specific underlying problem that can arise in weight gain. If someone has a hip problem, or a back problem, they can't exercise, and start gaining weight. Here our physical medicine team would be called in to fix the problem and get them back to the gym for fitness training. I like to call this a plug and play model, with all these components at the same facility. We look at every puzzle piece: fitness, genetics, hormones, sleep – the whole list, and see which pieces are out of alignment, and need to be fixed. We use the individual practitioners, and put the whole puzzle back together.

Dr. Edelson's practice is in Great Neck on Long Island in New York as of May 2011.

Read Aquameliza's weight loss story in Ken Farbstein's book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, or get it at Amazon.

Wednesday, April 20, 2011

Two Resources for Patient Advocates

My book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, advises professional and family advocates how to keep their loved ones safe during health crises. Thanks to the advocates and activists who contributed stories, many of which appear in Chapter 12, on finding and working with professional patient advocates.

Second, Dorland Health’s new Professional Patient Advocate Institute offers webinars, newsletters, special reports, a directory, and certification for advocates. Membership has its privileges: notably, two free copies of my book, too. The book is also available a la carte from PPAI at a discount, and on Amazon.

Saturday, April 16, 2011

An attack on my liver: FDA's MedWatch adverse drug reports on Xenical

Dr. Sidney Wolfe of Public Citizen warned against the use of Xenical and Alli (weight-loss drugs in the orlistat class), after reviewing the reports of adverse reactions to them according to the U.S. government's FDA MedWatch reports. Here's the experience of one customer:

Monique Paulwell of Bowie, Maryland said she only took Alli four times before she began feeling fatigue, loss of appetite, a nagging headache and jaundice. "After a battery of tests, [doctors] said there had been an attack on my liver. By the time I was admitted to the hospital, I had 48 hours to live. It was that serious."

She said she thought taking Alli would help her lose a few pounds and maybe boost her acting career. Instead, she had a near-fatal experience her doctors told her was caused by the drug. She said she needed a liver transplant to save her life.

Public Citizen found that severe side effects affected dozens of patients who'd taken the drug, and that the drug's benefits, in any event, were minor, amounting to 4 - 5 pounds of weight loss. That has to be weighed against the 20% chance of side effects, some of which are severe, e.g., liver disease, pancreatitis, and kidney stones. The FDA received 47 reports of acute pancreatitis and 73 cases of kidney stones attributed to orlistats.

As with any drug, one should weigh the likely benefits in light of the possible harm. The advice of a pharmacist can be helpful in this context. A drug like Xenical works by blocking absorption of about a third of the fat enzymes that enter the body. Instead, the fat passes through the body to the gastrointestinal tract until it is excreted. These medications also block fat-soluble vitamins including vitamins A, B, and K.

Advice: For me, it's much easier to give advice like "maintain a healthy weight" than it is to follow my own advice. Yet it is important, especially because the surgical alternative for weight loss has some serious trade-offs, as discussed in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

Thanks to Lara Salahi of ABC News for some of the background information here from their story on April 14.

Friday, April 15, 2011

Michael Jackson, Tom Brady, and Boris Yeltsin: Getting Your Best Health Care

What do Michael Jackson, Tom Brady, Boris Yeltsin, and Anna Nicole Smith have in common?

They all had health crises with important lessons for protecting your clients’ health, and your family’s health, as told in my new book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

How does this book benefit the reader?

The lessons from the dozens of stories of celebrities and others are easy to read and absorb in advance of any health crisis. If the reader is in a health crisis, she can refer to the summary suggestions at the end of each chapter, and the chapter on using a professional advocate, for immediate guidance.

The book also draws lessons by telling the healthcare stories of Dr. Don Berwick, actress Farrah Fawcett, former Pres. George W. Bush, comedian Art Buchwald, Dr. Jerome Groopman, Dr. Peter Pronovost, newsman Ed Bradley, former Rep. Geraldine Ferraro, and many others.


Many doctors and nurses consider themselves patient advocates. What should they do?

My book describes how they can be maximally patient-centered. They can redesign everything from their academic approaches to their wallpaper, and everything from patient orientation and scheduling to end of life discussions.

In 50 words or less, how would you describe your book?

This book teaches patient advocates, both professionals and family members, to partner with their doctors and nurses, through brief stories, each with a lesson. Most chapters feature at least one story about a famous doctor or celebrity.


Who is your intended audience?

Two groups: Professional advocates, and women over 40. The professional audience will consist mostly of patient advocates, geriatric and other case managers, social workers, nurses, doctors, etc. Secondly, women usually serve as the guardians of their family’s health, so they’re the most likely readers. Women who are sandwiched, pressed between the needs of their elderly parents and their children, are the primary audience. Men who take responsibility for their own health, and that of their family, should also read the book.


What does “patient advocacy” mean in today’s healthcare world?

At different times in their work with an ill person, the advocate plays the roles of a teacher, midwife, knight, confidante, and political activist. To me, an advocate is ultimately a champion who helps a single patient get safely through a health crisis.

Why is there an urgent need for a book about patient advocacy right now?

There are three reasons occurring within the last month or so. First is the greater awareness of just how widespread medical errors are. In early April, David Classen, Roger Resar and their team reported in Health Affairs that one-third of hospital patients experience an adverse event. That awareness creates great fear among patients. Knowledge about how patient advocates can keep people safe in hospitals will dispel that fear. Second is the growing appeal of medical procedures that are surprisingly risky, ranging from cosmetic surgery to new ways to use powerful radiation to treat cancer. Third is the broad push by both political parties’ leaders to reduce healthcare costs. President Obama and Rep. Paul Ryan both announced game-changing initiatives in early April. It’s likely this will ultimately impel hard-working clinicians to work even faster, putting patients at risk.

What kind of information can readers expect to glean from the book?

The book is brimming with dozens, if not hundreds, of specific tips, each one presented as the moral of a true story about a celebrity, political figure, family member, or patient advocate. There’s everything from how to find the best Emergency Room, to suggestions for those living with chronic illness, everything from lessons learned in childbirth to how to pass on your wisdom to your heirs.

In the end, what do you hope to achieve through this book?

I have two hopes and dreams. I want to create the new patient, who becomes a partner with doctors and nurses in his own treatment. I want to guide the emerging professional patient advocates.

Where can readers find your book?

Bound books and e-books are available at a discounted price at Dorland Health's Professional Patient Advocate Institute. It’s also available online at Amazon.

Any parting words of advice for patient advocates?

They can rise to the challenge, as did the inspirational heroes in Chapter 12.

Thursday, April 14, 2011

May yield substantial benefits: The fifth birthday of the Massachusetts universal health insurance law

In 1993, John Ayanian and a team of researchers studied the detection and treatment of breast cancer among women in New Jersey with and without health insurance. In their widely cited article in the New England Journal of Medicine about the harm to women's health of the lack of insurance, they concluded, "Comprehensive programs to improve access to early detection and optimal treatment may yield substantial benefits." Little did they know.

Fast forward to 2011, and the recent fifth birthday of the passage in Massachusetts of a state law requiring near-universal health insurance, Chapter 58 of the Acts of 2006. By my calculations, the new coverage for many thousands of women has likely led to the earlier detection and treatment of breast cancer, saving the lives of dozens of women each year, and more than 200 since the law went into effect. It would be interesting to see more precise calculations. Perhaps this could be an exercise for public health students.

Happy Birthday, and many more!

Read about the first birthday of the Massachusetts health reform law.

Monday, April 11, 2011

Grateful every day vs. prolonging my dying: Two views of kidney dialysis

Ruth Silverman's letter:
My husband, a retired neonatologist involved in ethical issues in medicine, suffered acute renal failure at 87. He was hospitalized briefly and underwent several dialysis treatments during this time.

His urologists (three of them) told him that they were arranging dialysis for him three times a week upon discharge from the hospital. He confronted them with these words:

"I am 87 years old. It is a waste of the resources of this nation to provide me with dialysis three times a week. You will not be prolonging my life. You will be prolonging my dying. That is not the quality of life I choose."

My husband had executed an advance medical directive several years earlier in which renal dialysis had been specifically excluded, so this was not a hasty decision. He returned to our home and his own bed.

Our three adult children joined us, and my husband received wonderful, competent and tender care, made possible by our local hospice. He assured us that he had no regrets about his decision and died peacefully and pain-free two weeks later.

Philip Stopol's letter:
As an 87-year old undergoing my fifth year of dialysis, I am grateful every day for the opportunity to benefit from the results of this treatment. My goal has always been to lead a satisfying and productive life.

For 23 years, I have been enrolled in the Hofstra University PEIR group (Professionals and Executives in Retirement), in which I both attend and teach classes.

Weather permitting, I occasionally play either 9 or 18 holes of golf.

I frequently drive to Manhattan to enjoy a museum or Broadway show.

I refuse to accept dialysis treatment as a death sentence because I have proved that it is not.

Read a story about informed medical decision-making. Thanks to the New York Times editor, who published these letters in today's issue.

Sunday, April 10, 2011

They're horrified: Deaf parents and appropriate cochlear implant surgery

Prof. Harlan Lane's take on disability, tolerance, and appropriate surgery for the deaf:


Question by Margot Sanger-Katz: Nine out of ten deaf people marry other deaf people. Why?

Answer by Prof. Harlan Lane: That's very significant. People who are blind as a rule do not want to marry other blind people. It's a positive value being deaf. When a culturally deaf woman is pregnant, she is hoping, "I'll love this child; it will be my child. But if it was deaf that would be really nice." That's one bit of evidence that deaf people don't view themselves as disabled.

Q: Does that mean they tend to oppose medical interventions for their deaf children, like cochlear implants?

A: Yes. There have been some surveys. And I've spoken with deaf adults, both those who have deaf children and those who don't. And they're horrified. To give an analogy, if we told pygmies we can make life a little easier for your kid if we administer this growth hormone to them, so they'll be taller, they would mostly be offended. Likewise with black Americans, if we told them we can make life a little easier for your kid because with a little plastic surgery and some skin lightening, which we can do now, they're going to "pass" more easily, I might get punched, and justifiably so.

If you're talking about the deaf as an "ethnic group," and what you're offering them is to try to change them to make them more like the majority, because life is easier for the majority, that's unethical.

It all turns on the definition of disability. The surgeons, especially, can only see disability. And, of course, if you can mitigate a disability, that's a good thing. But I, and deaf people, and others who know the deaf well, see that there's no disability here. There's a physical difference, which many minorities have.


We should allow the deaf to make their own decisions about surgery even if they decide differently than we would.

Read a story about href="http://www.PatientSafetyBlog.com/2010/05/when-you-buy-car-inappropriate-surgery.html">saying No to surgery. Thanks to Margot Sanger-Katz, whose interview appeared in today's Boston Globe.

Saturday, March 26, 2011

Still living her memoirs: Elizabeth Taylor, Saying No

Elizabeth Taylor lived large, in the moment. Late in life, after a variety of health problems, she chose not to undergo a back operation, saying she had already had a half-dozen and wasn't up to another one.

When she received yet another offer, late in life, to write her memoirs, she refused, saying, "Hell no, I'm still living my memoirs."

Advice: Live your life your way, and make your decisions accordingly.

Read about another person who said No to back surgery. Thanks to Mel Gussow for his source article in the New York Times of March 24.


Thursday, March 17, 2011

Her husband wasn't ready: Discussions about the end of life

Dr. Jeffrey Schnipper's story:


I see people die in horrible ways. It doesn't need to be that way! In 2011, it takes a lot of work to have a good death. The default is to not have one.

A few years ago, an elderly woman with a bad case of dementia came to our hospital for a cardiac problem. She couldn't verbalize what she wanted regarding her healthcare wishes. Her husband was not ready to let her go. He was her healthcare proxy. He and I met probably for an hour, every day, for a week. We went through the stages of grief together. By the end, he was willing to let her go.

She had a good death.

As a hospitalist, I view these discussions as a really important part of my job; so do other hospitalists. I sometimes get the chance to get the whole family together for long periods of time, which primary care providers can rarely do.

Residents tend to be very concrete about these discussions, asking, "Do you want chest compressions? Pressors? Dialysis?" And so forth. But that's not what the discussions should really be about. It should be more like, "Is your goal to get a cure? To get relief of symptoms? To be as functional as possible? To be kept alive at all costs? Would you like to die at home? What’s important to you? If you were no longer able to do [fill in the blank], would you want to be kept alive?"

Dr. Schnipper's advice: The earlier you can have these discussions, the better, so you'll have a reservoir to draw from. First, talk with your healthcare proxy, after you've chosen one, then with your primary care provider. Then, there are forms to fill out, living wills, healthcare proxies, and so on, as appropriate for the state you live in.


Read my father's end of life story.

Thanks to Dr. Schnipper for our interview of March 16.

Monday, March 14, 2011

I don't regret it: A kidney donor's pre-existing condition

Marci McKim's story:

I gave my husband a kidney in 2000 in the vain hope of keeping him alive until a match could be found (long story short). He never got the second kidney and died in 2002. I lost my corporate job in 2007 and have been unable to afford health insurance since then.

I don't regret the extra months of life I gave my dear husband; it was my pleasure to do so. But when I see articles about the lifesaving procedure today, I wonder why anyone would do it. Medicare covers the recipient, but the donors are left to the tender mercies of the health insurance industry, which considers us pariahs because we have a re-existing condition. If a live donor loses health insurance, there's no recourse.

Read a very different kidney donor story. Thanks to Marci for her letter to the editor of the New York Times on March 13, reprinted here.


Saturday, March 5, 2011

A smoke-making machine: My Don Berwick & his CMS Nomination

Twenty years ago, when my son was a toddler, my wife and I brought him with us to the National Forum of the Institute for Healthcare Improvement (IHI). He had a cold at the time, but was otherwise fine. As we checked into our hotel room, we saw Dr. Don Berwick, who was entering his own room next door. He said we could call him, even in the middle of the night, if needed, to come and take a look at our son. The gesture was doubly generous because no doctor can cure a cold; the visit would be for the purpose of reassuring us young parents. My son slept peacefully, so we didn't need to take up the offer of this internationally known pediatrician to make an unpaid house call.

Senators Orrin Hatch, Mike Enzi and 40 other Republican U.S. senators sent a letter to President Obama on March 3, asking the president to withdraw the nomination of Dr. Don Berwick as head of the Center for Medicare and Medicaid Services (CMS).

The letter cites four reasons. One is Don’s "lack of experience managing an organization as large and complex as CMS." CMS is the largest organization in the world, so only people who have already led CMS could have that prior experience.

The letter criticizes the President's nomination as "abrupt and unilateral." The Republican legislators' recent habit, of refusing to even formally debate many congressional matters via the filibuster, makes "unilateral" an example of the pot calling the kettle black.

Third, the letter cites Don's past record of "controversial statements." The most loudly voiced (though utterly ungrounded) Republican concern has been to "death panels." Don's father, himself a doctor, died in a nursing home. Don has long pushed hard to make treatment at the end of life – which some call "death by intensive care" – far more humane, via his leadership of the nonprofit Institute for Healthcare Improvement. Don has certainly made controversial statements over his long career in the midst of efforts to greatly change our healthcare system.

The final stated reason in the letter is Don's "lack of experience in the areas of health plan operations and insurance regulation." Before founding IHI, Don led a unit in a large pioneering health maintenance organization (HMO) that was really about health maintenance: Harvard Community Health Plan. (I'm proud to have worked in a sister unit there at the time.) Perhaps Don does not have experience in insurance regulation; I don't know.

Thus, these senators seem to be asking the President to bilaterally nominate someone who led CMS in the past, who has not made controversial statements. No such person exists, of course.

We have to assume that the senators made as compelling a case as they could. But there's no smoking gun here. There is smoke, however: the fact that so many senators agree is itself newsworthy. Well, where there's smoke, as they say, there's a smoke-making machine.

That machine has been quite busy lately. I hope that the President will use his training as a law professor to see the true crux of the senators' objections. Since the stated reasons in the letter aren't genuine, there must be some other reasons. My hunch is that these senators think Don has been, or will be, too effective. And that they must win at all costs, even at the costs of logic, and at the cost of depriving more than 30 million Americans of health insurance.

Read a story about President Obama's personal commitment to health care reform.


Saturday, February 26, 2011

I began my quest: A MRSA infection

Kathy Day’s story:
My father had a minor fracture of his ankle, and was in the hospital for 12 days of rehab, and then was home for a day and a half. Then he collapsed, and was brought back to the hospital. On admission, they diagnosed him with pneumonia. After he was in the hospital for six days and after he developed a MRSA urinary tract infection after a catheter insertion, I asked for a sputum culture (I'm a retired E.R. nurse, so I know about these things). It took them a day and a half to get the results, which showed them it was a MRSA infection. We'd been visiting him with no precautions; now they told us to use full precautions – gowns, gloves, and masks.

Dad was in the hospital for a total of 20 more days. He suffered through sepsis, complete loss of energy, appetite, and independence. He got blood transfusions, and very strong IV antibiotics. His treatment caused him thrush, a body-wide allergic reaction and loss of hearing. He had been living independently with my mother at home before. Once his acute care (hospital) was "complete" he was sent to a nursing home. He had become a totally bed-bound nursing home patient because of this, and couldn’t sit up without passing out. After nine weeks in the nursing home, in an isolation room, he became very depressed. In total, he lost a third of his body weight. He never walked again. What happened to him wasn’t so rare, as a month before he’d been admitted, two joint replacement patients had had MRSA in the same small 25-bed hospital, and had died from it.

After this happened to my father, I began my quest for MRSA prevention. I wrote letters to the hospital, did research, and came upon Jeanine Thomas, who was the founder of MRSA Survivors Network in Chicago. She's a real powerhouse! She got a law passed in Illinois. Then I wrote a proposal for Maine, got the necessary support and a sponsor, Representative Adam Goode. We passed a law in June 2009 to screen all high risk patients for MRSA on hospital admissions.

Kathy Day's advice: If someone is at risk for MRSA, e.g., they're elderly, coming from a nursing home, with ongoing health problems, or are about to have implant surgery, request MRSA screening from the admitting physician for their own safety. For an elective admission, it's best to be screened a week or two ahead of time to allow decolonization (to clear the MRSA from the patient's body) through five days of preparation, including showering daily with Hibiclens, and the ointment Mupirocin for the nose, which is a prescription antibiotic. If you test positive for MRSA before entering the hospital, you should be either isolated or cohorted (roomed with someone with a like organism).

There's a higher risk of infection for surgery involving implants, e.g., knee or hip replacements, or cardiac valve replacements.

Read Jeanine Thomas' MRSA story.

Friday, February 25, 2011

Five minutes of education: Physician-patient communication upon hospital discharge

From Dr. Jeffrey Schnipper's research:

A patient was admitted for worsening shortness of breath and weakness. Evaluation showed ischemic heart disease [reduced blood supply to the heart], which was managed medically by changing her blood pressure regimen from metoprolol tartrate (50 milligrams, twice a day) to metoprolol succinate (extended release, 100 milligrams, once a day), lisinopril, and isosorbide mononitrate. She came to her nurse practitioner eight days after discharge for a blood pressure check, complaining that she’d been experiencing three days of scalp tingling [paresthesias] and headache; her blood pressure was markedly higher. On questioning, she reported not taking the long-acting metoprolol prescribed at discharge, because of a misunderstanding. She was brought to the Emergency Department, where she was treated, observed for several hours, and discharged home.

This was due to a discrepancy after discharge; she had stopped her short-acting drug and did not realize she needed to start the longer-acting one.

Such misunderstandings are common, partly because changes in medications are made so frequently. Upon an inpatient’s discharge from the hospital, doctors change 40% of the medications the patient has been taking, on average. “Five minutes of education of the patient and having them ‘teach-back’ what they have learned could eliminate the need for an E.R. visit later,” Dr. Schnipper says.

Advice to patients leaving the hospital:
Ask these three questions:
1.What changes should I make to the meds I’ve been taking?
2. Why are these changes needed?
3. What do I need to watch out for?

To ensure you’ve heard the answers correctly, repeat the answers back to the nurse or doctor.

Thanks to Dr. Schnipper, whose article appeared in the March 13, 2006 issue of the Archives of Internal Medicine.



Thursday, February 24, 2011

Still waiting: Apology for a medical error

Jeni Dingman's plaint:

Today it will be 16 years ago that I lost my dear and wonderful mother due to multiple medical errors, miscommunications, and a flawed healthcare system that did not pay attention to the needs of patients and families. As there have been some changes in those years, years that I have freely given to a cause that I hope someday will save lives, 250,000 Americans still die every year due to medical error. The most important change has yet to come. It must concern communications, patient engagement, patient empowerment and partnering. This can ONLY occur if we are welcome and invited to participate by our providers. Most of all, patients and families must be listened to. I do not know what outcome might have occurred had clinicians listened to my mother and I so long ago, but do I know that my pain would not be as intense as it is every single day had we not been discounted, written off and ignored by those entrusted by our family to do the right thing. My mother was NOT anxious as the clinicians indicated, she was in trouble, and no one rescued her, no matter how hard I tried to get them to listen, they didn't, and they never ever apologized either, I am still waiting for that apology.

Thanks to Jeni for her source posting to Facebook.

Here in Massachusetts, many members of the Consumer Health Quality Council of Health Care for All have experienced errors in their families, but have not received apologies. We have filed a bill to encourage doctors and nurses to apologize for medical errors. We hope that any upcoming federal legislation about medical malpractice claims would strongly encourage, if not require, apologies.

Read a story about a hospital's apology.

Tuesday, February 22, 2011

In a new way: The American Society of Professionals in Patient Safety

Diane Pinakiewicz and her team at the National Patient Safety Foundation recently announced the launch of the American Society of Professionals in Patient Safety.

In an interview, Diane told the story and described the vision behind it. This is excerpted from our interview:

In 2007, we took stock, and said, We've been working in this area for ten years, and now, patient safety is a legitimate discipline. So how do we legitimize and organize it and help move it forward? We developed the Leape Institute, as a think tank for the field.


There were many passionate people, but no membership organization for them to connect to. NPSF had a membership programs for hospitals, but not one for individuals with patient safety as its uniting principle.


And the field lacked a certification program like the ones there are for Risk Management, Quality Improvement, and so forth.


We want people to understand that this is everyone's responsibility.


Our vision of success for the ASPPS ten years from now would have two parts. First, everyone in the healthcare system who delivers services to patients would have learned, and could exhibit, competencies for safe care. Second, that patients and their families would be educated and involved in a new way in the tenets of patient safety, and they'd know why their involvement is so important.


Read another story about http://www.patientsafetyblog.com/2011/01/recent-progress-by-patient-activists.html">visionary patient safety experts. Thanks to Diane Pinakiewicz for the interview.


Saturday, February 19, 2011

Human judgment is better: Patient advocates and fatigue alarm

Liz Kowalczyk's recent articles in the Boston Globe highlighted the problem of alarm fatigue in Massachusetts hospitals. The noisy alarms are so often false alarms that staff learn to ignore them. Since most of the alarms are false alarms, ignoring them is usually harmless. But sometimes, of course, the alarms are genuine. One set of disregarded alarms led to the death of Madeline Warner in a Massachusetts hospital. Alarms had sounded for 75 minutes, warning that her heart monitor's battery needed to be replaced. Kowalczyk found that hundreds of deaths had been causes by such alarm fatigue in the last five years; indeed, this probably represents only the tip of an iceberg.

"If there were an obvious solution to this problem, we would have done’" it, said Dr. James Bagian, the former chief patient safety officer for the Veterans Administration hospitals, where he said there have been multiple patient deaths and close calls because alarms were turned off or the volume was turned down. "No one has one."

I disagree. There may well not be a technical solution now, given the current state of technology. Human judgment is better. But most humans in hospitals are busy taking care of numerous patients. A dedicated patient advocate, on the other hand, is focused on a single patient. When family members acting as advocates, or professional patient advocates, insist on a Rapid Response by hospital staff, for example, in a de facto humanly-triggered alarm, about half the Rapid Responses are later ascertained as valid, with the benefit of hindsight. That true positive rate of 50% is far higher than the true positive rate of machine alarms. That is one of the most powerful reasons why people should bring a patient advocate, preferably a professional, into the hospital with them.

Advice to hospitalized patients: Bring a patient advocate with you.

Read another story on hospital Rapid Response methods.


Wednesday, February 16, 2011

In the check-out line: Safe counts for surgical sponges

Brian Stewart's background is in the investment industry, including investments in medical device companies. To help in his due diligence, he would often reach out to friends, family and outside consultants with clinical backgrounds. Much of that dialogue would result in clinicians sharing their thoughts on issues they often faced in their daily practice. This is where he first became aware of the issue of retained surgical sponges, their frequency and the real economic and human costs. Brian's father, a surgeon, added additional perspective by sharing the realities of the operating room and the typical usage of sponges in surgery. From a number of previous investments Brian had made, he was relatively familiar with various forms of automatic identification, including simple barcodes, two-dimensional codes and RFID technologies. Thinking out loud to his father as they stood together in a line at a grocery store, watching a woman quickly scan each item in their cart and hand them a detailed receipt of each item, he pondered "Why not use a technology of some sort to help nurses count more accurately?" That was the beginning of the company they co-founded, SurgiCount Medical.


Brian and his father worked for years to develop a cost effective, safe solution. Finally they found something that worked well, from the garment industry – it uses iron-on thermal transfer labels. So a bar code on a piece of plastic is basically melted onto the sponge, placing a unique identifier on each sponge. When used with a small handheld scanner, the solution helps increase the accuracy of sponge counts, in that each sponge can only be counting IN once and OUT once. This addresses the underlying issue in the vast majority of retained sponge cases, false "correct" counts. That is still the core of the product that the company Brian is CEO of today (Patient Safety Technologies, which acquired SurgiCount back in 2005) offers, called the SurgiCount Safety-Sponge. That has proven to help eliminate retained sponges and the costs associated with them for those using it, which includes over 65 hospitals, including five of US News and World Report’s 2010-11 Honor Roll Hospitals.

Now, in the February 2011 issue of the Joint Commission Journal on Quality and Patient Safety, there's an article about a multi-year study, the largest ever done on retained foreign objects, in which the Mayo Clinic examines the occurrence rates of retained sponges and profiles the success that Mayo had by implementing the Safety-Sponge System there. Before implementation, Mayo was averaging a retained sponge every 64 days (about one in 8,000 operations). Eighteen months after implementing the Safety-Sponge System and using over 1.8 million Safety-Sponges in more than 87,000 cases, they have not had a single retained sponge. In addition to the usage at Mayo, over 32 million Safety-Sponges have been successfully used in more than 1.6 million operations.

Read a story on a http://www.PatientSafetyBlog.com/2007/01/they-dont-count-non-surgical-towels.html">retained object.

Thanks to Brian Stewart for our phone interview for this blog post and to Stephanie Pavol.

Monday, February 14, 2011

Keeping the love growing: James's Project

Mary Ellen Mannix's Valentine's Day card:


I hope you enjoy a wonderful day with your special valentine!
James's Project is working to keeping the love growing and we are wearing our hearts on our sleeves today.
This past month James's Project helped a pregnant mom get care she was being refused, a 2-year-old who had a tonsillectomy to find medical coverage for expenses and help in the infection treatment post-op, educate a heart baby's mom about what questions to ask and how to search for a doctor's license, and advocated at the national level for standardizing Congenital Heart Defect screening in newborns via the pulse oximetry.


Thursday, February 10, 2011

He wasn't open to the woo-woos: The Urban Zen Foundation

As a designer for Anne Klein, Donna Karan gave birth to her daughter Gabby the same week a collection of resort clothes was due, even as her boss Anne was succumbing to cancer. Donna's mother died on the day of a fashion show, and her husband died the same week as a show. Through it all, Donna kept working, later leaving Anne Klein to form Donna Karan New York. She got involved in philanthropic work when the AIDS epidemic broke out. It’s now the 25th anniversary of the start of her fashion label, and two years since she founded the Urban Zen Foundation, located in a large art studio in Greenwich Village in New York City.

Long a New Age devotee, she was transformed by her husband Stephan Weiss' seven-year battle with lung cancer. She says, "Stephen wasn't open to what he would call my woo-woos – all the alternative methodology journeys I would take. But all of a sudden, when he got sick, he realized the importance of them. He did yoga four times a week; he had an Iyengar teacher who would come because he needed postural positions to help him breathe. We did acupuncture, Chinese medicine, massage and raindrop therapy with essential oils. It became obvious to me that this was what was missing in the hospital system."

She was also deeply affected by the struggle of her best friend, Lynn Kohlmann, who died from breast and brain cancer in 2008. "When you get the call, panic sets in: What do we do? As loved ones, we're not trained in health care. But when you're a patient or a loved one, you need a guide….So I asked, 'Who is putting together a movement that is changing the hospital system?' There was a void. No one was integrating" the health care.

Now her Urban Zen Foundation offers a 500-hour Urban Zen Integrative Therapy program that brings together health professionals and yoga teachers who are taught in-bed yoga, meditation, Reiki, aromatherapy, palliative care and nutrition. The participants in the first year, who include doctors, nurses, yoga instructors, yoga practitioners, physical therapists and other healthcare providers, complete 100 hours of clinical rotation at a hospital.

"Our healthcare system today needs help. This is a huge project, and there's a lot of work to do. I have to take it one day at a time. This is in its infancy stage. This is a movement that's being created. I want to join with all these brilliant people: Deepak Chopra, Mehmet Oz, Mark Hyman, Woodson Merrell. If we all join forces, we have a lot of people on this path. It's definitely a mission, and it's the most challenging thing I've ever done."

Thanks to Leslie Bennetts for her source article in the July 2010 issue of Town & Country.

Tuesday, February 8, 2011

For many years: Crying by doctors

Dr. Amina Hassan Abdeldaim's letter to the Editor:

"A Mantra: No Crying in the CAT Scanner" on Feb. 1, Dr. Ellen Feld's exquisite telling of her experiences during her own treatment for breast cancer, finally allowed me to let go of the tears I have been blinking back for many years.

As a physician at a cancer hospital, I am in awe of the patients' stoicism and strength. If my patient cries, may I cry too? Will it help or hurt the patient to know I may have a dose of "unprofessional sympathy"?

Advice to doctors: Your compassion and empathy are much appreciated. I hope you can find some way to show that, maybe by letting yourself cry.

Read another story about compassionate physicians. Thanks to Dr. Abdeldaim and the editor of the New York Times, where her letter was published today.


Monday, February 7, 2011

In front of the entire class: Surgical success rates

Dr. Harvey Cushing became the father of brain surgery, following his surgical residency at Yale in the late 1890s. He attributed his success to meticulous care, rather than innovations per se. One key to his success was meticulous record-keeping. It started when he was assisting with surgery as a student, using a sponge to administer ether, and the patient died in front of the entire class. Appalled and mortified, Dr. Cushing and a classmate soon developed "ether charts," to keep track of a patient’s heart and respiration rates, perhaps his first major contribution to medicine. Such charting revolutionized surgery by greatly curbing complications and deaths from anesthesia, according to the Journal of Neurosurgery.

Since Dr. Cushing's era, anesthesia is the field of medicine where doctors have most greatly reduced their error rates. The systematic collection of their data and the scrutiny of it by those empowered to change medical practice saved many lives. Doctors in other fields also now record information on their success rates. It's time for this information to become routinely available to consumers. In Massachusetts, a legislative bill to require surgeons to provide some basic information to consumers is under consideration.


Advice: Find out the success rates for your surgery and your surgeon before you go under the knife.

Read another story about such transparency of surgical data. Thanks to Richard Conniff for the source story in the January/February 2011 issue of the Yale Alumni Magazine.

Friday, February 4, 2011

Our border collie is our personal trainer: Dogs' contribution to health

Groundhog Day came and went, but now we're back in the dog days of winter. Two dog lovers' stories:


Barbara Abrams' story:

We are in our 70s and have no doubt that our dog significantly contributes to our health. Gracie, a three-year old border collie, gets two long walks (two miles on average) every day, no matter what the weather. And the weather here in Rochester, New York can be brutal, with black ice on the sidewalks. But no matter how strong the temptation to stay in, Gracie demands her walks, appealing to us with her soulful, puzzled eyes when we are behind schedule. She is our personal trainer.

Will Mesa's story:

Not long ago my dog brought me my bottle of aspirin in her mouth while I was having a terrible headache, proving that pets indeed help alleviate pain in owners.

Advice: Keep using your personal trainer, of course, while leashed and curbed properly at all times.

Read another story about what dogs teach us about healthcare.

Thanks to the editor of the New York Times Letters to the Editor, for these stories published on January 10.


Thursday, February 3, 2011

Vanderbilt University Hospital Advisory Council's Accomplishments of 2009

This is a small subset of the accomplishments in 2009 by the hospital's Patient and Family Advisory Council, led by Mary Ann Peugeot:

Inpatient Admission Guide;

Surgical Consent template revised to 5th grade reading level;

How to Have a Safe Clinic Visit: core elements were defined for signage;

Discharge Video;

Clinic Kiosks: Discussed the effectiveness of check-in kiosks and made recommendations.


The full set of accomplishments in 2009-10 can be read here.

These changes make Vanderbilt’s council a model of how patients and families can guide hospitals in becoming more patient-centered. Kudos to Mary Ann Peugeot and her Council!


Advice: Ask to participate in your hospital’s council.


Read another story about innovative patient and family advisory councils. Thanks to Mary Ann Peugeot for the source.


Wednesday, February 2, 2011

Airline pilots and NASCAR teams have them: Hospital checklists

Dr. Peter Pronovost's story:

I was a young doctor doing specialty training in critical care, and I was exhausted. Partway through a 36-hour shift at my academic medical center, I was hungry and hadn’t slept for 24 hours, but I was facing an overflowing intensive care unit and somehow needed to discharge five patients to make room for more. Mr. Smith (not his real name), who'd had esophageal surgery [in the gullet], was a borderline call. But because of the pressure I was under, I decided to remove his breathing tube and transfer him to another unit.

That turned out to be a very bad decision. Before long, his breathing sped up as his oxygen levels dropped dangerously. I needed to reinsert his breathing tube. But what I didn't know was that he had severe swelling in his throat. When I looked into his mouth and tried to identify his vocal cords in order to insert the tube, all I saw was a swollen mass of dark pink tissue, like raw hamburger.

I took the instruments out and started to bag him, breathing for him, but he vomited, making that almost impossible. I finally go the tube in – but quickly realized it was in his esophagus, not his airway where it belonged. When you insert a breathing tube, you give the patient medication to stop his breathing. You have about four minutes before he suffers brain damage. It took me between three and five minutes to get the tube properly placed.

I waited anxiously for the medication to wear off, which usually takes about 15 minutes. But after an hour, he was still asleep. After six hours, I was panicked. Luckily, he regained consciousness shortly thereafter and recovered with no ill effects.

Before I pulled that tube, I should have had to complete a checklist that included input from the patient's senior physician and nurse. If anyone had disagreed, I wouldn't have been able to act. Many medical errors occur because hospitals lack standardized checklists for common procedures designed to minimize the chance of bad judgment. Airline pilots and NASCAR teams have them – why don't doctors?

A few years ago, I helped develop just such a list for doctors and nurses in more than 100 ICUs in Michigan. It focused on a common intensive care procedure: inserting a catheter into a vein just outside the heart for delivery of intravenous liquids. It ticked off five steps everyone had to follow, and in 18 months, it lowered the rate of catheter infection by 66% and saved 1,500 lives.


Such checklists are the subject of a bill just introduced to the Massachusetts legislature as Senate Docket #1766/House Docket #879.

Advice: Let your state legislator know you’d like such a law.

Read Paul Levy’s blog post about reducing central line infections through checklists, or read another story about checklists.

Thanks to Joe Kita and Dr. Pronovost for the source story in the October 2010 issue of Readers Digest.