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Sunday, March 7, 2010

When you most need it: Anthem Blue Cross' denial for Ephram Nehme's liver transplant

Readers, I almost never use the name of providers and other organizations that are involved in outrageous decisions or errors. This case deserves to be an exception.


Anthem Blue Cross is a large insurer in California, part of the Wellpoint company. Anthem’s parent, Wellpoint, declared profits of $4.5 billion in the most recent quarter. A few weeks later, Anthem Blue Cross decided to raise its rates for members in California by 39%. A year earlier, Anthem's staff had denied an expensive life-saving liver transplant to Ephram Nehme.

Ephram had emigrated to the U.S. from Lebanon, moving to New York City after high school. There, he paid his way through accounting school by pumping gas and selling umbrellas. He yearned to start his own business. Twenty years after working for other people, he did so, opening a produce market in southern California, and then another one.

Following a blood transfusion in the 1970s, he had gotten hepatitis. He was able to manage the condition for many years with medication. But by late 2006, his doctor, a liver disease specialist at UCLA, told him it was time for a liver transplant.

Given the quirky rules for liver donation, the relatively small number of liver donors in California, and the urgency of his need, Ephram's doctors told him to promptly seek a transplant out of state. To Anthem Blue Cross, that meant "out of network," and they denied his request.

Ephram got a lawyer, who filed a lawsuit in Los Angeles Superior Court.

The denial stated that his score on a liver disease scale (the MELD – Model for End-Stage Liver Disease) was in a gray zone that did not necessarily justify a transplant. Ephram's lawsuit includes a copy of the letter from a doctor confirming that the MELD score was not in the gray zone, but rather was at a level indicating a prompt liver transplant was clearly required. In other words, the letter proved that Anthem had been incorrect. When learning of their error, staff at Anthem then changed their justification for the denial, saying that Ephram's "noncompliance," and inadequate medical therapy by the UCLA Transplant Center, had caused his situation, so that they need not pay for the very expensive procedure.

By 2006, Ephram was too sick to fight, so his wife called and begged Anthem to reconsider their denial. While the appeal was pending, Ephram's doctor convinced him that waiting too long could be disastrous. Anthem again formally refused to pay for the life-saving transplant.

Luckily, Ephram had enough money to move to Indiana and spent $200,000 of his savings for a hospital there, where he received a successful liver transplant in January 2007.

"If I hadn't," he said, "I'd be gone."


We don't give insurance companies many thousands of dollars a year of our money out of charity, or because we want to support their executives' lavish lifestyles. The only reason why people spend many thousands of dollars a year in health insurance is so that, if they become desperately ill, even a very expensive procedure will be paid for and provided. When an insurance company takes our premiums and realizes a huge profit, and jacks up their premiums so they will make even more in the future, and denies the life-saving procedures whose payment is the only thing that justifies their existence, something is deeply wrong with the status quo.

Advice: If you like our health insurance system to operate like this, do nothing to support healthcare reform, and it will act exactly like this when you most need it.

Read another story about an insurer’s denial for life-saving treatment. Thanks to Lisa Girion for writing the online Los Angeles Times story of October 7, which provided certain background details.

Friday, March 5, 2010

My father, my hero: Paul Farbstein

Today is the third anniversary of the death of my father, my hero, Paul Farbstein.

He waged a long fight with Parkinson's Disease, without complaining. Even this disabling and humbling disease did not pierce his characteristic calmness.

With my mother's help, he did daily stretching exercises. To keep some muscle tone, he used a Theracycle, a self-propelling exercise bicycle, which greatly delayed his need for a wheelchair.

Long before Parkinson's, he had written a living will to express his wishes, and opted against heroic measures. We brought him to a hospice in the final days, at my urging. At that point, the only thing I could give my father was a good death.

Advice: Live like Paul Farbstein.

Read another story about hospice care.

Thursday, March 4, 2010

But neglect their own American neighbors: Universal health care in Thailand

James Cameron Mielke's story:
I was disappointed, but not surprised, when I read the story about the couple that were obviously confident enough to be holidaying in Indonesia, but when the guy broke his ankle, they freaked out and high-tailed it all the way back to the USA - taking that long, expensive and arduous journey just to fix his broken ankle. Apparently they were not aware of the world-class health care available in nearby countries like Singapore, and in Bangkok and Hong Kong, to name a few. They would have been amazed at the stellar care available had they simply hopped over to Singapore - and while cheaper than in the USA, their insurance should have covered it anyway.

I can't tell you how depressed I get when I hear the news each day - and I'm sure most people around the world have been rolling their eyes in dismay over the pitiful health care debate in the USA. It is simply appalling that Americans don't have a universal health care system of some sort. As you know, we are the only developed nation in the world that doesn't have this - but people have been fed so much misinformation, and have been so frightened - and of course, too many of the politicians have been bought out by big business that likes the status quo. If we could only extricate ourselves from fighting so much global warfare, and trying to do nation-building everywhere except in our own country!!! Man, then perhaps we could do better with our education system, for one thing. Then America might not be looked at as such a naive, inward-looking nation that we are, like that couple in Indonesia, perhaps still thinking the only safe place to get health care is in the USA. Wake up, folks!! America is no longer the only player in the world. Asia, in particular, has taken off dramatically, as the USA decays...

My sister Jean in the USA pays 25% of her earnings on health insurance premiums that don't always cover her care. Her policy has a $5,000 deductible, so she pays for most of her care out of pocket.

She is healthy. But when she arrived in Thailand over Christmas, she had a nasty, sharp cough. She said she had just decided it wasn't too bad to live with. She had had it for over a year!! And the cost of seeing an MD was enough of a deterrent, so she just lived with it. But I insisted she see the doctor here. Without an appointment, and for a $25 doctor fee and some meds, she was diagnosed with chronic bronchitis. Within days the cough cleared up. She returned for two more days (she was only in Thailand for a week). She spent three days at the hospital because it was so convenient, pleasant, caring, and affordable, with one-stop shopping. She didn't have to be sent all over to different facilities or to see different doctors for the various procedures, e.g., X-ray, etc.

In short, the system here works, even at the most expensive private hospital in the country (Bumrungrad), 60% of the patients are Thais. It is not just a place for rich foreigners to go. And Thailand has universal health care: for 30 baht ($1), all people in the country have access to basic health care. This is one of the few good things former Prime Minister Thaksin did to help the poor here. So why can Americans pour out their hearts and give so much to places in need like Haiti and Afghanistan, but neglect their own American neighbors in the USA!!!

Read a story about medical tourism. Thanks to James Cameron Mielke for the source email message.

Wednesday, March 3, 2010

We had control over what happened: Pain control at a child's end of life

When Christine Reilly's little boy was being treated for cancer, she told his doctor she could handle almost anything. "The only thing I will not be able to tolerate is him looking at me and saying, 'Mommy, it hurts," she recalled.

Michael died when he was five years old, of alveolar rhabdomyosarcoma, which was diagnosed when he was nine months old. He pain was well controlled, especially at the end of his life.

Christine said once she and her husband knew Michael's cancer had spread, their focus shifted from curing the disease and having a child who could live a normal life to making sure he could have the most peaceful death possible. He died ten days after the family came home to Massachusetts from a trip to Disney World.

After they returned home, Michael's pain medications made him sleepier each day as his disease took its natural course. "We felt fortunate we had control over what happened," she said.

Dr. Joanne Wolfe and her colleagues just published a paper in the Archives of Pediatrics and Adolescent Medicine on this topic - the first paper that weighs parents' thoughts about the end of life for their terminally ill children. More than one-eighth of these parents considered hastening their child's death. Five parents said they had actually asked a caregiver to speed their child's death.

Advice to parents of terminally ill children: Use this study as a starting point for a discussion about end-of-life care for children. Explore all the options for pain control with your child's doctors and nurses.

Read a story about a plan for the end of life. Thanks to Elizabeth Cooney for the source story in the March 2 issue of the Boston Globe.

Monday, March 1, 2010

Blue Cross Blue Shield's new policy on never events

Certain medical errors are so horrific that they should never occur: the wrong patient having surgery, or a blood transfusion of a mismatched type, as Tawnya Brown fatally received, for example.

These cases are tragic. Adding insult to injury, the billing system of the hospital or medical practice typically bills for the treatment, and is paid for the error. The national Blue Cross Blue Shield Association has just announced
that its 39 BCBS companies have followed Medicare’s lead and adopted a formal policy not to pay for certain “never” events:

"Wrong surgeries" (wrong patient, wrong body part or wrong procedure);

Pressure ulcers stages III & IV;

Catheter-associated urinary tract infections;

Vascular catheter-associated infection;

Surgical site infection, mediastinitis, following coronary artery bypass graft (CABG);

Air embolism;

Blood incompatibility;

Foreign object retained after surgery;

Falls and trauma (fracture, dislocation, intracranial injury, crushing injury, burn, electric shock);

Surgical-site infections following certain orthopedic procedures;

Surgical-site infections following bariatric surgery for obesity;

Manifestations of poor glycemic control; and

Deep vein thrombosis and pulmonary embolism following certain orthopedic procedures.

Advice to patient advocates: Forward this to your colleagues.

Thursday, February 25, 2010

Fish, buffalo, salad, and Air Force 2: Dick Cheney's Fifth Heart Attack

Katie Drummond writes engagingly on "How Does Dick Cheney’s Ticker Keep on Ticking?"

The recent Vice President suffered another mild heart attack – his fifth – and was released from the hospital earlier this week. He has had eight cardiac events, which have been treated with a quadruple bypass (a CABG), an implanted stent, an implanted cardioverter defibrillator, which was later replaced, and many medications.

The secret of his survival? Cheney has performed aggressive and sustained self-care. After his first heart attack, at age 37, Cheney ended his 20-year heavy smoking habit. Later, before becoming Vice President, he lost 25 pounds. When he flew on Air Force 2, he often brought his elliptical trainer. Aides say his diet now consists of "fish, buffalo, and salad."

Another secret to his survival has been his top-flight, 24/7 medical attention. While he was Vice President, the White House Medical Unit accompanied him with a fully loaded medical bag. As Cheney commented in 2003, "I've got a doc with me 24 hours a day who watches me very carefully."

Advice to heart patients who don't have Air Force 2 and your own 24-hour doctor: Safeguard your own health as actively as Dick Cheney.

Read a story about former president George W. Bush. Thanks to Katie Driscoll for the source story in the AOL News of Feb. 24.

Friday, February 19, 2010

A pretty fair trade: Abdominal surgery in Bangkok

From James Cameron Mielke's Christmas letter:
While packing for my summer visit to the USA, I noticed a slight bulge in my abdominal incision, and headed instead to Bangkok for surgery - it all seemed like such a breeze compared to the nightmare I endured three years before when admitted in emergency and life-threatening condition – this time was so much easier just to check in as scheduled. With practiced precision, the nurse located one of my elusive veins to start the IV, the anesthesiologist wished me a pleasant snooze, and after 90 minutes on the table my surgeon had successfully inserted a large mesh across my entire abdomen – like getting a new set of surgically implanted "six-pack" abs!

Man, what a deal! Emerging from the unexpected surgery and almost relieved to have to cancel my USA trip – I was dreading the long journey anyway, and with all the economic stress and other difficulties there…and I was able to recover my frequent flier miles as well! Interestingly, I had been feeling strangely resistant to the whole thing - as if some underlying intuitive awareness was trying to alert me to this potentially disastrous trip. Apparently, I was literally coming apart at the seams - the longitudinal incision that runs from stem to sternum was ripping apart and the muscles were separating, which meant that I was a walking time bomb. It would not have been at all pleasant if my guts had decided to spill out while on the plane or somewhere away from home. And of course, I would have taken a huge financial hit if I had needed emergency surgery while in the USA. Thank goodness I live in Thailand where my highly specialized state-of-the-art surgery, anesthesiology, and three days of in-patient hospital care came to just $2,000, which is about what my USA holiday would have cost - a pretty fair trade considering I can now look forward to an even better quality of life for years to come! Many of the competent and eager nurses remembered me from before, and my cost-conscious surgeon even gave me the remaining portion of high-tech mesh that another patient had purchased but didn't use. My sister Jean also enjoyed high quality, efficient and affordable health care during her visit to Phuket during Christmas week.

So, once again, I cannot believe my good fortune, not only to have avoided another possible disaster, but also to be given what now seems like a gift – such a wonderful gift of enhanced quality of health and blessed freedom to continue enjoying my life! I can only feel the deepest gratitude for it all – and am humbled once again by the amazing blessings that keep coming my way. As the risk for infection decreased with each day of healing, and with deep, slow-dissolving sutures like a set of guitar strings holding me together, I set off for my annual four months of work. This year I joined a team of consultants to design a five-year $60 million regional communicable diseases control project in Cambodia, Lao PDR and Viet Nam.

Read a story about another American's health crisis far away from the U.S.

Friday, February 12, 2010

The former Commander in Chief toed the line: Bill Clinton's self-care

Former President Bill Clinton, now 63, has a history of heart trouble. In 2004, he experienced chest pain and shortness of breath, and had quadruple coronary artery bypass graft (CABG) surgery. Later, feeling that it was hard to breathe because of a rare complication of scar tissue and fluid build-up in his lung, he had another operation, in March 2005.

He experienced chest pain again a few days ago, and had another operation on Thursday. Surgeons in a New York hospital placed two stents (metal mesh tubes) inside a blocked heart artery to prop it open, after his bypass graft had become obstructed. Such vein segments taken from the patient's leg often become clogged in this way after a few years, requiring another operation.

I've seen stent surgery, and it's magical. The surgeon snakes a long narrow tube up several feet through a tiny incision in the inside upper thigh of the patient, while the surgeon watches a monitor that shows the patient's arteries and the progress of the long sheath, illuminated as needed by puffs of a fluoroscopic dye. The stent, initially compressed, is slid through the sheath, opening itself as it leaves the sheath. The only analogy is the way that a model ship in a bottle snaps out into its final form after emerging through the bottleneck. Finally, only a Bandaid is needed to protect the site of the incision.

Mr. Clinton did not suffer a heart attack. (Indeed, he was continuing to talk on a cell phone about relief and recovery efforts in Haiti, even as he was being wheeled into the operating room.) Rather, he heeded his body's signals by seeking medical attention promptly.

The head of Cardiology at New York-Presbyterian/Columbia hospital, Dr. Allan Schwartz, noted that "President Clinton has really toed the line in terms of diet and exercise," and said his cholesterol numbers were normal.

Advice to middle-aged men with chest pain:
Don't ignore your body's pain signals.

Read another story of a famous person’s successful heart surgery. Thanks to Peter Baker and Angela Macropoulos for the source story in today's New York Times.

Wednesday, February 10, 2010

But for the grace of God: Abigaile LeBron and caps on medical malpractice damages

After vaginal bleeding from unknown causes in the third semester of her pregnancy, Frances Lebron had a very difficult labor, and gave birth by C-section to Abigaile LeBron in an Illinois hospital in 2005.

It's hard to know exactly what went wrong. A jury agreed that Frances' Ob-Gyn doctor and nurse had not performed appropriate and timely tests on Frances, and/or didn't recognize, and appropriately intervene upon discovery of, a non-reassuring fetal heart tracing, and/or inappropriately continued labor-delaying ("tocolytic") medication, and/or failed to perform the C-section promptly enough.

The poor little girl suffered severe and lasting brain injury, and cerebral palsy, among other results, and will not be able to feed herself; she needs a gastronomy tube. She'll need substantial help for the activities of daily living, probably throughout her life. Of course, that will cost a lot of money – which the jury awarded.

The Illinois Supreme Court recently decided an appeal of that decision. The state Supreme Court ruled that a newly legislated cap on damages for medical malpractice is unconstitutional. The result is that the jury's award will indeed be able to help Frances care for Abigaile.

There, but for the grace of God, go I. Twenty years ago, doctors at a Harvard teaching hospital slowed my wife's premature labor with such a "tocolytic" drug (Turbutalene), and continued the drug too long, as with Frances – but my son was born healthy, and my wife had no ill effects. We were lucky.

I'm sorry for the anguish suffered by Frances and Abigaile, and by their doctor and nurse.

Advice for people who've suffered catastrophic medical errors:
Ask potential lawyers if you'll be faced with a cap on damages in your state.

Read another story on a C-section error. Thanks to Illinois attorney Martin Dolan and Lauren Bishop for discussing and forwarding this story.

Saturday, February 6, 2010

He had to be re-admitted: Rep. John Murtha's hospital acquired infection

U.S. Representative John Murtha, Chairman of the House military appropriations committee, is recuperating in the intensive care unit after a surgical infection from his gallbladder surgery. He'd had laparoscopic surgery to remove the gallbladder in late January, and had to be re-admitted to a hospital because of the infection.

He was in grave condition following the hospital infection. Now the infection is responding to antibiotics, and the condition of the 77-year-old congressman has been improving.

Nurses should provide antibiotics before surgery (prophylactic antibiotics) to prevent surgical infections, but don't always do so. A surgical checklist should remind nurses and doctors about the antibiotics, but checklists are not always used.

Advice to patient advocates of patients undergoing surgery: Ask the surgeon beforehand if he or she uses a checklist. If you don't hear Yes, choose another surgeon. If they don't use a checklist, or if they bristle at the question, that might indicate arrogance that can intimidate their clinical teammates into silence when a surgical error is about to occur.

Read other surgical infection stories. Thanks to Carol D. Leonnig and Paul Kane for their background article in the Washington Post of Feb. 3.

Friday, February 5, 2010

It entitled him to Medicaid coverage: A pharmacy benefit error

Zumante Lucero struggled with asthma for the last nine years, since he was three months old. He loved karate, drawing cartoon figures, and riding bikes with his brothers and sisters near their Denver home. His doctor said his lungs were severely inflamed, so he required Advair twice a day. Zumante's condition had been so severe since age six that he was covered by Social Security, which entitled him to Medicaid coverage.

Yet the retail pharmacy's computer system mistakenly showed he was not eligible for prescription drug coverage.

He was brought to the Emergency Room in May and June and given free samples of the medicine.

But it was not enough. On July 16, his mother heard him call from upstairs: he couldn't breathe. She called an ambulance, but Zumante lost consciousness before it arrived, and never regained consciousness.

Advice to parents: If you can't get the medicine your child needs after three calls to the insurer, go to the CEO – and to the press, if necessary.

Read another asthma story. Thanks to Allison Sherry for the source story in the Denver Post on Feb 4.

Thursday, February 4, 2010

What we have known all along: ACGME's review of guidelines for residents' work hours

I still remember the helpless fear I felt on a bus in 1978 as we twisted our way along the narrow hilly road leading to Jerusalem, steered by a sleepy bus driver. Each time he nodded off, his head then snapped right up again. Thank God, we arrived safely.

But God didn't prevent an accident from exhaustion when my son was born, 12 years later. Going into premature labor eight weeks early, my wife was admitted to a Harvard teaching hospital, where doctors delayed her childbirth for a week. Then when hearing one evening that she was experiencing abdominal pain, the sleep-deprived residents confidently attributed them to gas pains! Finally the next morning, a pelvic exam revealed her cervix was nearly fully dilated, ready for delivery. Exhaustion had ruined their judgment, so my wife had to suffer the pain of childbirth for 12 hours without any pain medication.

Now the Accreditation Council on Graduate Medical Education (ACGME) may start facing what we have known all along: exhaustion creates errors. Even for very intelligent and dedicated doctors. At ACGME's Board meeting on Feb. 7 they'll consider whether to restrict the hours that hospital residents can work.

Supporters of the status quo say that shorter work hours require more dangerous hand-offs from one doctor to another. This is seductive but misleading. Yes, sometimes an alert and well-rested resident hands off the responsibility for a patient's care to another alert and well-rested resident, and communicates clearly and comprehensively. But much more often, an exhausted resident hands off to a chronically sleep-deprived resident. We know that exhaustion fogs memory, and clouds judgment and complex thinking, like the ability to prioritize and summarize. So it's hard to imagine that hand-offs as they are now performed consistently provide a clear and thorough briefing for a patient's care.

The best solution is both to reduce the use of exhausted residents, and thoughtfully improve the hand-off process. Error-proof it by minimizing the reliance on memory. For example, how about a "Hand-off" command in the electronic medical record system that could automatically summarize the patient's diagnosis and recent key lab results and vital signs for a doctor coming on shift? Or the audio recording of the hand-off communication as it occurs, for prompt automatic transcription into the electronic medical record?

A bereaved mother and national patient safety leader – Helen Haskell – organized a press conference today on these topics. She is leading an effort to reduce residents' work hours – which could have saved the life of her 15-year-old son, Lewis Blackman. See the new website on shortening residents' work hours, and share your story there.

Would you want my Israeli bus driver as your child's doctor in the hospital?

Read a fatal fatigue error story.

Wednesday, February 3, 2010

Bring a man's shirt: A recovery wear garment for mastectomy patients

Peg Feodoroff's story:
As a result of my and my youngest sister's cancer experiences, we were compelled to start a company that would improve the environment in which people are asked to heal and recover. We designed a Recovery Wear garment that we call the Original Healing Threads. This was our first project and we have many other ideas to further our mission. However, we need to be profitable before we can proceed.

Hospitals cannot afford to purchase our Healing Threads for their patients. We do have 4 hospitals throughout the USA that have forward-thinking decision makers who give our Healing Threads to their mastectomy patients before their surgery. They raise the money to pay for them via the medical institution's philanthropic arm. Wearing our Healing Threads allow women to recover and heal with their dignity and modesty intact. The patented break-away panels allow only the body parts that need to be exposed, to BE exposed. The interior pockets hold post-surgery drainage bulbs discreetly and comfortably. Did you know that the medical community has a common practice of preparing women for breast surgery by suggesting that they bring a MAN'S SHIRT to the hospital for their trip home? Now, your breast or 2 has been removed and now they confirm your feelings of inadequacy as a woman by advising you to bring in a man’s shirt! Not so subliminal a message there! Oh, and then they clip the drainage bulbs to said shirt where they constantly remind you that you no longer have a breast. The Hippocratic Oath states, "First, do no harm," and obviously is taken as an admonition against physical harm. The psychological harm being done is undeniable and endless.

Our garments provide our customers with dignity, modesty, and empowerment. Being able to say "no" to a hospital gown empowers a person to say "no" to other directives: to ask questions; to get 2nd or 3rd opinions; to dialogue with the doc re options, side effects, etc., etc.. To take control and ownership of their own health, their own illness or disease. To bring to the battle the mind, the body and the spirit. Without all 3 working together recovery is not possible.

Yes, you do have a choice, a choice that has won praise from many medical personnel who have worked with patients wearing it. Our Healing Threads are not only attractive, they are supremely functional.

Read a story about hospital gowns. Thanks to Peg Feodoroff, the president of Healing Threads, for the story.

Sunday, January 31, 2010

Real Men Don't Wear Gowns

Ken's rant:
I like to look silly – once in a great while, at Halloween, and Purim. But even then, I don't cross-dress.

I don't do dresses. And not nightgowns, negligees, chemises, and not even aprons, either.

So, hospital nurse, don't give me a johnny – one of those ridiculous open-to-the-back gowns with a drawstring and little chotchke designs.

There are 5,000 other hospitals in the country, and if you hand me a johnny, I'll haul myself out of your hospital bed and find a hospital that doesn't make me wear one.

Advice to patient advocates: Tell your clients to bring their own bathrobe or favorite pajamas to the hospital.

Read a very different story about a patient’s dignity in the hospital.

Friday, January 29, 2010

A strong step in the right direction: What Massachusetts Voters Did Not Say

Here's my letter to the editor after the election of Scott Brown to the U.S. Senate:

Massachusetts citizens have consistently supported the state's universal health insurance law. The most recent survey, in September, found that 79% want the law continued. The law has the support of Republicans and Democrats, including some prominent ones. The Republican front-runner in the gubernatorial race, Charles Baker, calls the law "a strong step in the right direction" and indeed, calls for expanding services, according to his campaign's website. Sen. Scott Brown voted for the law as a state senator, and in his recent campaign for the U.S. Senate, did not ask for its repeal. Republican Governor Mitt Romney signed the bill into law. Massachusetts' Republicans and Democrats generally support the law.

The meaning of Massachusetts voters' election of Scott Brown to the U.S. Senate is unclear – but it clearly does not show general dissatisfaction with universal health insurance as it is in effect here. It would be a tragic mistake, harming the health of tens of millions of Americans, to conclude that Massachusetts residents have spoken against expanded health insurance coverage.

Read Dr. Atul Gawande's opinion on the effects of Massachusetts’ near-universal health insurance coverage.

Advice: Forward this to your U.S. congressman.


Thursday, January 28, 2010

Through my dying day, and beyond: Gay Culverhouse Player Outreach Program

Her father was the founder of the Tampa Bay Buccaneers football team, and she herself later served as the company president. Somewhere along the line, Gay Culverhouse took note of the frequent long-term disabilities that NFL players suffer, and she took it to heart.

In October, she testified critically to Congress' Judiciary Committee of the House of Representatives about the NFL’s lax policy toward concussions and overall player safety. She vowed publicly to set up an organization to seek out former players in need, arrange their doctor visits, and help complete their paperwork.

She delivered. The fledgling Gay Culverhouse Player Outreach Program first sent an advocate to help Jerry Eckwood, a popular running back for the Buccaneers from 1979 to 1981. Jerry, now 55 years old, is unable to go grocery shopping, handle his checkbook, function on his own, or often even to speak coherently. His doctor strongly suspects he has dementia, after Jerry’s multiple concussions as a football player.

Gay has worked quickly to build the nonprofit program, which is based in Tampa, Florida. "I have to be made obsolete. The NFL is hoping that I made a one-shot deal in Congress and now I’ll go away. I’m going to fund this through my dying day and beyond. This thing can't die when I die."

Gay's selflessness and drive are particularly laudable because she herself is terminally ill with myelofibrosis, a disorder of the bone marrow that causes severe anemia and kidney failure. Former players admire her toughness and compassion. Former All-Pro tight end Jimmie Giles said, "I've never heard of anybody in football stepping up to the plate like this. This lady, she's like Gandhi to us."

Read another NFL concussion story. Thanks to Alan Schwarz for the source story in the Jan. 22 issue of the New York Times.

Advice to health advocates: Live like Gay Culverhouse.


Wednesday, January 27, 2010

He clung to this wish: Fatal radiation overdose

Scott Jerome-Parks was raised in a conservative family in Gulfport, Mississippi, later moving to Toronto, and then New York City. There, he met his Canadian-born wife Carmen, a dancer, singer and aspiring actress. He took a job as a computer and systems analyst, at the southern tip of Manhattan.

Haunted by the deaths he saw up-close on September 11, 2001, he volunteered to work with the Red Cross near "the Pile." He developed what he initially thought was a nagging sinus infection, diagnosed two months later as tongue cancer. His doctor believes there was a link between his tongue cancer and the toxic dust from the collapsed towers, though the cause of his cancer was never proven.

Scott approached his illness as any careful consumer would, evaluating the treatment options before choosing a hospital. He chose a hospital that provided Intensity Modulated Radiation Therapy (IMRT), which it advertised as more precisely targeted, and so having fewer serious side effects, than conventional radiation therapy.

The first four radiation treatments were provided as prescribed. The medical physicist revised the treatment plan for the fifth session to better protect Scott's teeth from radiation damage, at the suggestion of Scott's doctor. Such a revision of the treatment plan is a time-consuming task. As the medical physicist tried to save the computer program containing the revised treatment, late in the morning of March 14, 2005, the system crashed, after appearing to save the changes first. An hour later, Scott's doctor approved the new plan. Half an hour later, the computer crashed again. Six minutes later, staff administered the first of several radioactive beams. They administered another round the next day.

Two friends – a layman and a nurse – noticed something wrong because of Scott's intense pain, and swelling throughout his head and neck, and asked the hospital to check on Scott. The hospital sent a psychiatrist. Scott received another round the next day. Several hours later, the medical physicist ran a test to see whether the radiation had been provided appropriately. Then she tested again, and tested a third time. A frightful mistake had been made: Scott's entire neck had been exposed, causing a large overdose of radiation. The damaged cells were not reparable.

Scott died in early 2007 at age 43.

The New York City hospital treating him for tongue cancer had failed to detect a computer error that directed a linear accelerator to blast his brain stem and neck with errant beams of radiation - not once, but on three consecutive days.

In a recent exceptionally thorough data analysis, the New York Times found that the complexity of this new technology has created new avenues for error – through software flaws, faulty programming, poor safety procedures, or inadequate staffing or training.

As he lay dying, he clung to this wish: that his fatal radiation overdose – which left him deaf, struggling to see, unable to swallow, burned, with his teeth falling out, with ulcers in his mouth and throat, nauseated, in severe pain and finally unable to breathe – be studied and talked about publicly so that others might not have to live his nightmare.

Read a happier radiation story. Thanks to Walt Bogdanich for the source story in the New York Times of Jan. 24.

Advice to patient advocates for patients undergoing radiation: Insist on a test by the medical physicist before radiation is used. The test is customary but is sometimes skipped, as it was here.

Sunday, January 24, 2010

I was a good patient: Patient-doctor relationship

Nurse Practitioner Richard Ferris' story:

I am so damn tired of this...I am not my f----ing T cell count or viral load level and I wish to hell people would stop treating me like I am. It is degrading, and worse yet, it puts up roadblocks to communication between friends, medical providers, and the rest of the damn world.

I have been practicing AIDS medicine since the beginning of the epidemic. Today is very different and as a clinician I am a much happier man because of the advances in HIV therapy, but we have become a community that is still fixated on clinical numbers and not the person sitting in front of us and this had got to stop.

I recently felt compelled to change my AIDS doc because all I was a bunch of numbers to her. I was the "good" patient." She knew I took care of myself, was sober, worked out, and was nearly perfect with sticking to my meds. So I got the "greet them, treat them and, street them" kind of medical care all clinicians fall into now and then on a regular basis. So after numerous attempts of talking with her about my care concerns and not seeing things change I said the short version of the Serenity Prayer, which is "F--- it!", and found another provider who is wonderful. She treats me like a real person. I am a real person! She asks what is going on in my life and my numbers, while still important, are not the heart and soul of every visit.

I have had several other medical conditions overlooked because of my being a "good patient" that I had to handle myself. But I am lucky because I am an AIDS certified Nurse Practitioner and knew how to get the help I needed. What about the average person with HIV/AIDS without that sort of background? What happens to them? I assume they fall through the clinical cracks and suffer.

Maybe that is the lesson here: NEVER BE A GOOD PATIENT!

Read another story about an HIV patient who’s very aware of the relationship with his doctor.

Thanks to Richard for his post, at Richard’s POZ blog.

Friday, January 22, 2010

She has found such a source of strength: Empathy for SMA type-1 sufferers

Q. My cousin and I are in our late 20s and quite close. This past year, her newborn son was diagnosed with a condition called SMA type-1. It is a form of muscular dystrophy and is terminal. Babies born this way are missing a gene needed to build and maintain muscle. There is no cure, and babies rarely survive their first year.

I am in awe of my cousin's strength. She has developed a large network of friends on the Internet, who all have, or have lost, a child to this illness. Every time we talk on the phone or see each other, she updates me on all the babies who have passed away since the last time we spoke. Talking about these things helps her cope and prepares her for what is coming.

My problem is that I'm empathetic by nature and am becoming increasingly overwhelmed hearing about all these babies passing away. How do I curb what I am feeling so that I can keep listening for as long as she needs me? Signed, Overwhelmed

A: She doesn't need to talk with you about these deaths because she has this large support network. I would tell her it's become too much for you to hear of all this loss, and that you are grateful she has her support group, all of whom are experiencing the same thing. You are not really part of their "club" and must ask to be left out of the loop of updates. That said, tell her you will do anything you can for her, and you love her as always. You might add that it's wonderful she's found such a source of strength in fellow sufferers.

Read another story about empathy for a medical condition. Thanks to columnist Margo for the source story in today's Boston Globe.

Wednesday, January 20, 2010

It was easily preventable: Luis Fermin Tenorio and H1N1

In 1991, a young boy in Peru became the last child in the entire Western Hemisphere to get polio. He hadn't been immunized, though the vaccine was available. Now about 21 years old, Luis Fermin Tenorio had been only a toddler at the time. That life-changing event was easily preventable.

Now we are in the midst of an epidemic that has killed 11,000 people in the U.S., according to the Centers for Disease Control An inexpensive vaccine is available to everyone through doctors' offices, CVS, Walgreen's, and many other places.

Don't let someone in your family risk suffering or dying needlessly from the H1N1 virus!

Advice: Get vaccinated against the swine flu now.

Read another vaccination story.

Friday, January 15, 2010

We've created that: Consumer Health Quality Council's Accomplishments in 2009

As the council president, I had the pleasure of making a presentation about the progress made in 2009 by our Consumer Health Quality Council, at a meeting of the consumer council and our advisory council on Wednesday, organized by Health Care for All:

We've made a lot of progress this year, thanks to the work by you and our other council members. As we start 2010, the signs point to continued progress. To name just three examples both of how well we’ve done in 2009 and how we’re set up to succeed in 2010:

You told me, this time last year, that our biggest priority was the implementation of Chapter 305. We've had notable success there. For example, consider the two work groups that I know the best from my own work: Rapid Response Teams and Patient/Family Advisory Councils. For the first time in Massachusetts, and indeed anywhere in the U.S. to the best of our knowledge, there is an early tabulation of the statewide use of hospitals' rapid response methods to promptly rescue deteriorating patients. We've created that! In doing so, we discovered the first family-initiated rapid responses. We have an emerging strategy of encouraging hospitals through recognizing the ones who've reported active use of the often life-saving rapid responses.

Second, our PFAC (Patient/Family Advisory Council) work group has also produced a first-of-its-kind useful public statewide accounting – of hospitals' plans for PFACs, and a listing of the first changes in extended visiting hours, maps of cardiac care milestones for an inpatient, washer/dryers for patients' parents, to name only three innovative changes. A strategy of publicly commending these innovative hospitals can spread these changes through the state in 2010 – with your continued help. Third, we've benefited from our new members, with more new skilled people coming on board soon. Our new members have been particularly active through our work groups. Kim Slack and others will likely join us in 2010, adding to our capacity.

Read another story about the work of our Consumer Health Quality Council in 2009.

Wednesday, January 6, 2010

A lot of others worse off than him: Post traumatic stress disorder among veterans

Army psychiatrist Nidal Hassan apparently committed a mass shooting at an Army base in Texas. If it turns out that Major Hassan did in fact break partly under the stress of the job and impending deployment, many veterans would not be surprised.

"If this guy can go over the edge, imagine what it is like for the actual combat troops who have been through four or five deployments," said Bryan Hannah, 22, a disabled Iraq war veteran from San Marcos, Texas, who was stationed at Fort Hood until he was discharged a year ago because of post-traumatic stress disorder (PTSD) and other injuries.

He added, "There are a lot of others who are worse off than him."

Advice:
Bring our soldiers home before more horrors like this occur.

Read a PTSD story with a happier ending. Thanks to the writers of the New York Times for this story, published Nov. 8, 2009.

Tuesday, January 5, 2010

I CAN'T TASTE ANYTHING: Zicam Cold Remedy Nasal Gel

Charlene's friend’s story:
I want my friends and loved ones to know what has happened to me in hopes that it will never happen to you or anybody you care about.

About 10 days ago, I felt a cold coming on; so before I went to bed I used Zicam Cold Remedy Nasal Gel. It's supposed to help you "get over your cold faster." Immediately after I sprayed it into each nostril I felt the most horrific burning sensation imaginable. It literally felt like I had sprayed pepper spray directly into my brain. It burned all the way to the top of my skull. Mynasal passages swelled, my eyes watered – the burning lasted all night long into the next day. 
 


After about a day, I realized I couldn't taste anything and I thought, "Wow - I must really have a bad cold." Then I noticed that I couldn't smell coffee brewing, couldn't smell my perfume when I put it on, couldn't smell the popcorn I burned, couldn't smell my favorite candle. Ipanicked and starting smelling everything that I could find that had really strong odors – ammonia, finger nail polish remover, bleach, etc. I couldn't smell ANYTHING!

I started tasting everything that had really strong tastes such as HOT salsa, raw red onions, Doritos, coffee. I couldn't taste ANYTHING! 
 
I told my mother about this and she said, "Oh, I've heard Zicam can affect your Olfactory nerve."

I went online, typed in "Zicam side effects" and bam - up popped all sorts of web sites with people reporting the same thing I experienced. It seems that this past June, Zicam pulled the swabs for adults and children off the shelf but not the nasal gel. 
 


I went to my ENT and he said the Zicam had basically "FRIED" my Olfactory nerve and the results are most likely permanent. He put me on a strong dose of a steroid called Prednisone in hopes of recovering ANY bit of the nerve damage but he told me to "take this and pray." He said he had read about the side effects of Zicam and couldn't believe it is still on the shelf. It isn't FDA approved.

I am taking the Prednisone and praying but nothing is happening. I LITERALLY CANNOT SMELL OR TASTE ANYTHING! I can tell if foods are hot or cold, I can tell the consistency and I can faintly detect if it is salty but that is it. 
 


PLEASE, PLEASE, PLEASE pass this on to everyone you care about. I don't want this to happen to ANYONE else!!!!!!!!!! And if you have Zicam in your medicine cabinet—THROW IT AWAY!

Read the FDA Advisory.

Read a story about a very different kind of treatment for a nasal condition. Thanks to Charlene Casucci for sharing this story.

Monday, January 4, 2010

To our everlasting gratitude: Advance directives

Ginny Nagy's story:

To the editor,
Your article about "drug-induced sleep" and "terminal sedation" was especially timely for me.

My mother passed away peacefully on Dec. 10 in Nathan Adelson Hospice here in Las Vegas. She had fallen at home the week before and broken three ribs, lacerating her liver in the process. She was 94.

It became increasingly clear that she would not recover from the resulting complications. Our goal was to make her comfortable and free of pain, which thanks to her and the hospice, we did.

The process of "terminal sedation" was gently presented to us. Kind doctors and nurses helped us every step of the way to our everlasting gratitude.

During this time, my sister and I faced tough decisions, but these were made at every turn with my mother's wishes having been clearly stated in writing. Both of our parents had put in place written advance directives. So I was saddened to read in your article that many families facing these situations still do so without knowledge of the family member's desires.

At the end, my sister and I, while suffering profound grief, believed that we made the right choices and that our mother died as she would have wanted.

Advice: Save your children the agony of making life-and-death decisions on your behalf at a time of huge stress by writing an advance directive.

Read a story about a hospice musician. Thanks to Ginny, and the editor of the New York Times for publishing Ginny's letter today.

Sunday, January 3, 2010

Who knew every inch of him: Donating your body to medical science

Dana Robinson is now a medical student, the daughter of a retired family doctor, Aubrey Gould, who passed away in the fall and had donated his body to UMass Medical Center.

At the conclusion of the gross anatomy class in the spring, most medical schools have a memorial ceremony for the cadavers. UMass invites the families of the donors to attend, as medical students honor what they call the "ultimate gift." Dana explains why she attended the ceremony: "I wanted to know who worked on my dad – who knew every inch of him, without knowing who he was." She said that meeting the students who dissected her father's body was one of the best experiences of her life. "They took care of him and they treated him with respect. I could sense how much it meant to them," she said.

Advice: Arrange now to donate your body to a medical school or organ transplantation center so others will benefit.

Read an organ donor’s story.

Thanks to Tara Ballanger for the source article in the G Section of the Boston Globe of August 17.

Saturday, January 2, 2010

The happiest six months of her life: Hospice care

Fiona Harrison's story:

To the Editor of the New York Times:

Your article, "Weighing the Medical Costs of End-of-Life Care," on Dec. 23, focuses on quantity of life versus cost, but what about the suffering of the patient and the family?

During her first year, my daughter Erica was treated at UCLA Medical Center. From birth she suffered severe neurological defects, causing her great physical pain. My husband and I, daily witnesses to her suffering, decide to seek pediatric hospice care.

UCLA refused to consider a hospice referral, so we decided to transfer Erica to Children's Hospital Los Angeles, which serves a less affluent population, and where the doctors supported a transfer to hospice care.

The results were dramatic. Her care focused on pain relief over survival, and Erica had the happiest six months of her life. She died at home, in our arms – perhaps a few months earlier than if we had kept her at UCLA, at lower cost and, most important to us, with much less pain and suffering.

Read Art Buchwald's hospice story. Thanks to Fiona Harrison for her letter to the editor in the New York Times on Jan. 2

Advice to families with terminally ill loved ones: You can insist on hospice care if you want to.

Friday, January 1, 2010

In a peculiar position: Patients' expectations of surgeons

I’m re-reading Dr. Oliver Sacks' memoir of his own severe leg injury as a young athletic hiker, A Leg to Stand On. This excerpt comes after a surgeon has performed technically successful surgery on the broken leg, but leaving the young Dr. Sacks with no feeling whatsoever in his leg, nor any ability to move it. Dr. Sacks has explained the story to his beloved feisty elderly aunt, who advises him:

"You're going to have to be very clear and strong and bold. You're also going to have to bow your head, and be humble, and acknowledge that there are many things that pass the understanding. You mustn't be arrogant – and you mustn't be abject.

"And you mustn't expect too much from the surgeon. I'm sure he's a good man, and a first-rate surgeon, but this goes far beyond the province of surgery. You mustn't get angry if he doesn't understand completely. You mustn't expect the impossible of him. You must expect, and respect, limits. He'll have all sorts of limits – we all do. Professional limits, mental limits and emotional limits, most especially…." She stopped, arrested by some recollection or reflection.

"Surgeons are in a peculiar position. They face special conflicts. Your mother was a dedicated surgeon, and a very gentle sensitive soul, and it was sometimes difficult for her to reconcile her human feelings with her surgery. Her patients were very dear to her, but as a surgeon she had to see them as anatomical and surgical problems. Sometimes, when she was younger, she seemed almost ruthless, but this was because her feelings were intense: she would have been overwhelmed by them, if she hadn't maintained a rigorous distance. It was only later that she achieved a balance – that essential balance of the technical and the personal.

"Be gentle, Bol! Don't react to Dr. Swan. Don't call him 'the surgeon.' It doesn't sound human! Remember he’s human – as human as you are. All too human, probably, and even shyer than you are. All the trouble starts when people forget they're human."

Read another story about patients’ expectations.

Thursday, December 31, 2009

The genie I dreamt of: A very good year for public health

On Dec. 31, 2008, imagine that a genie told you that in a year's time, it would be more likely than not that people seeking health insurance would soon receive insurance even if they had a serious pre-existing condition. And that 31,000,000 more Americans would soon have health insurance. And that in the meantime, if someone was laid off and at risk of losing the insurance they had through their employer, they would be able to keep that COBRA coverage for a much longer period. And that this would be produced via the leadership of an African-American president, without Teddy Kennedy playing a major role.

You would have thought, I'm dreaming of that genie.

Voila! As the Zionists said, If you will it, it is no dream.

Happy New Year!

Wednesday, December 23, 2009

Don't ever come back: Barriers to palliative care

Dr. Bruce Ferrell, who helps lead the palliative care program at UCLA Medical Center, recalls a patient two years ago who got a liver transplant but developed serious complications afterward and remained in the hospital for a year. "He had never ever been told that he would have to live with a ventilator and dialysis," Dr. Ferrell said. "He was never told that this was as good as it's going to get."

Dr. Ferrell talked with the patient about whether he might want to leave the intensive care unit (ICU) to go home and receive hospice care. But when the surgeon overseeing the case found out, he was furious.

"We do not use the h-word [hospice] on my patients," the surgeon told Dr. Ferrell. "Don't ever come back."

The patient chose to leave.

The UCLA Medical Center consistently ranks as one of the most expensive places in the U.S. to get end-of-life care, though its patients' outcomes are similar to hospitals that spend much less.

Advice to patients near the end of life: Even when in the hospital, you can insist on considering hospice care.

Read a story about hospice care. Thanks to Reed Abelson for the source story in today's New York Times.

Monday, December 21, 2009

She'll pull a Sori on him: Accompaniment by community health workers

Dr. Heidi Behforouz's story on Sori and Maria:
Sori is one of my PACT [Prevention and Access to Care and Treatment] community health workers. Sori told the story of Maria. A young woman with significant mental illness, and a cocaine user, Maria was referred to PACT with her immune system ravaged by uncontrolled HIV. For four years, Sori rode life's ups and downs with Maria, always encouraging, never forcing. Yet she was never able to help Maria consistently take her medications. Then one day, something clicked. Maria began taking her pills. She's now getting stronger and has voluntarily taken on the role of accompanying her boyfriend, showing up in his room with a cup of coffee in one hand and his psych pills in another, telling him that if he doesn't get up and take his meds, she is going to "pull a Sori on him."

With the power of such accompaniment, we have documented significant clinical improvement in the majority of our patients, and reduced preventable hospitalizations by 40%. We have been creating – to borrow a phrase – patient-centered medical homes.

Much of the care is being delivered by paraprofessionals who have not been extensively schooled in the biomedical model and don't practice office-based care. Their schooling and expertise is in the art and science of "accompaniment" – you walk with the patient, not behind or in front of her, lending solidarity, a shoulder, a sounding board, a word of counsel or caution. Empowering, not enabling. Together facing and managing challenges that neither you nor they can fix – poverty, racism, illiteracy, social isolation – so that you can help them swallow their pills every day, get to their appointments on time, and renew their Medicaid applications.

Advice to people with chronic illness: Find a Sori.

Read another story about patient partnership. Thanks to Dr. Heidi Behforouz for her source story in today's Boston Globe.

Sunday, December 20, 2009

The Senate's Christmas gift for families like the Mains: Pre-existing conditions

The Yes from Senator Ben Nelson is the crucial 60th vote in favor of the health reform bill. That's a major milestone toward the bill's passage.

On this morning's Meet the Press TV show, Sen. Nelson said that the early benefits of the bill, if it passes, will prevent insurance companies from denying coverage to children for their pre-existing conditions.

Who'll benefit? Hesper Main offers her example:
I too am a victim of Mega Life. Months before my son was diagnosed with leukemia we decided that we had let the children go without insurance for too long. I found an inexpensive insurance for the self-employed and called. The woman who set up our policy was a quick speaking, spastic, all over the place mess. She explained to us how wonderful a hospital-based plan was and my husband and I were not well educated in health insurance to doubt what she was saying. Now, the bills are so high that we are going to have to file bankruptcy. The woman at Mega Life completely misrepresented her company and duped us into purchasing our policy. My son is healthy and in remission, even though we are struggling with getting these bills paid. The doctors and hospital have never denied my son care. Thank God! I shudder to think of how many people out there are going through the same thing that we are.

Read another story about an insurer’s denial of a pre-existing condition. Thanks to the bloggers at Health Care for All for posting her comment, reprinted here.

Saturday, December 19, 2009

I'm an artichoke: Empowering people with serious disabilities

Dr. David Spiegel's story on Ed Roberts:
Ed Roberts, was transformed in 48 hours from star high school baseball player to permanent quadriplegic on a respirator by the polio virus. He has come to lead a remarkably independent and full life despite this, rising to become the head of the World Institute of Disability in Berkeley, California. After several years of deep despair, with his mother’s help, he applied to the Department of Rehabilitation of the State of California for entrance into its training program. He was rejected, with the comment hat he was "unrehabilitatable." He went to school anyway, gained considerable experience, and 2 years later became the commissioner of the same department! He is an energetic, outgoing man, who seems to project himself beyond his wheelchair, attendant, and breathing apparatus. He took steps to see that the disabled had control over those who helped them – making them, rather than the state, the primary employers. And he rails against the exclusion the disabled feel. (He hates the term "handicapped" – it comes from being "cap in hand.") Looking up at a roomful of bright young Stanford medical students, he said: "I think of you as temporarily able bodied." By mobilizing the disabled to share and work together, he was able to redefine the world of the able-bodied, and change it. "The doctors told my mother that I would be a vegetable," Ed commented. This was quite a mistake – the poliomyelitis virus attacks motor neurons, not the part of the brain that thinks. "But it turns out they were right – I am. I'm an artichoke: prickly on the outside, with a big heart in the middle."

Ed's transformation from a socially isolated, depressed, despairing young man who had lost "everything" into an effective, vital man who boasts about the quality of his life despite his serious disability, came in part through his contact with other people with disabilities. Through them he learned that he did not deserve what had happened to him, that he was not less of a person for it, that he could find other ways to rebuild his life. This resulted not from denying nor hiding from his disability, but rather from making it the starting point of new relationships and a new perspective on life. People with life-threatening illness do the same thing every day, and many more could, if they stopped suffering in silence.

Advice: Live like Ed.

Read another story about a disabled athlete.

Thanks to Dr. David Spiegel for the source – the book "Living Beyond Limits."

Friday, December 18, 2009

They couldn't offer a life-saving donation: Polycystic kidney disease as a pre-existing condition

David Waddington is a 58-year-old wine retailer in Dallas. He has polycystic kidney disease, a genetic disorder that leads to kidney failure. First he lost one kidney, then the other. A year ago he was on dialysis and desperately needed a new kidney. Doctors explained that the best match – the one least likely to be rejected – would perhaps come from his two sons, aged 27 and 29.

The two sons each had a 50% chance of inheriting PKD. If pre-donation testing revealed that either one had PKD, he might never be able to get health insurance: the pre-existing condition could make him uninsurable. As a result, their doctors had advised against their getting tested.

So "at the time David needed a transplant, the people closest to him couldn't even offer a lifesaving donation – for insurance reasons," David's wife Susan said.

Read another story about a pre-existing condition. Thanks to Nicholas Kristof for his source column the New York Times in October.


Advice: Tell your senator just how important it is that health reform include coverage of pre-existing conditions.

Thursday, December 17, 2009

In my son's best interest: Over-prescribing of anti-psychotic drugs

Suzanne Joblonski's story:
Re "Poor Children Likelier to Get Antipsychotics," published in the New York Times on Dec. 12:

I am the mother of a teenage boy who received a diagnosis of attention deficit disorder and oppositional defiant disorder eight years ago and was prescribed antipsychotic medication. Throughout the years, we have visited no fewer than five psychiatrists and countless other therapists.

I would often question why my son was prescribed medications (at one point three at a time) that failed to do as they promised. For example, the ones that were designed to help him sleep at night did the reverse, and the ones to keep him awake made him lethargic.

I decided that it was in my son's best interest to take a break from the weekly therapy and daily medication. Surprisingly, he functioned much better: His sleeping patterns and appetite improved. He is now back on medication, but with new therapists and with the parents' considerations in mind.

Families like ours are often duped into believing that there aren't options other than medication, or should we refuse to comply, charges of neglect could be brought.

Advice to parents: If your child's medications don’t have the desired effects, talk to the doctor about your alternatives.

Read another story on use of anti-psychotic drugs.

Thanks to Suzanne for her source letter to the editor, reprinted from yesterday's New York Times.

Tuesday, December 15, 2009

By necessity, great communicators: How doctors address their patients

Dr. Anne Marie Valinoti's story:
A physician friend of mine made the mistake of calling a woman of a certain age by her first name during a visit. "That's Mrs. White, thank you," she told him, icily.

"I never forgot that one," he said, remembering how he had sheepishly finished her exam.

But most patients, especially those under age 65, prefer doctors to use their first name, according to a study in the British Medical Journal. Since patients' preferences vary greatly, doctors should ask; they shouldn't assume.

Great primary care doctors are, by necessity, great communicators. All communication starts with what we call each other.

Advice: If you don't want your doctor to call you by your first name, tell them, or their office manager.

Read a story about excellent physician-patient communication. Thanks to Dr. Valinoti for the source story in today's New York Times.

Friday, December 11, 2009

I have no options: The public option for chronic pancreatitis

Robin's story:
To claim that the passage of a comprehensive health care bill will result 
in rationing is just plain ignorant. You ignore that many of us are 
uninsurable; I struggle with health issues post TP/IAT (pancreatic surgery with islet cell transfer like I had), yet must work, as my health 
insurance is supplied through my self-employment...and I pay $22,000.00 
per year for health care coverage, with a deductible.

I have no options, I cannot change or reduce my plan without fear of being 
reviewed again by underwriters and rejected. 

Don't you understand that without protection from a government plan, many 
of us would be blacklisted from group or individual health insurance because 
of our disease? 

Don't you understand that the insurance companies have the right (NOW) to 
deny you coverage because of "pre-existing conditions" clauses? 

Go to a website and at least read the health plan that was approved by the 
House...it is sensible, and it may provide affordable coverage to persons 
afflicted with chronic illness who otherwise would be uninsurable.



It is frustrating that there are those out there who really believe the 
NEGATIVE press that has been surreptitiously funded by health insurance 
companies and big PHARMA, why...because the government plan will cost them $!!
 
We with Chronic Pancreatitis are the outcasts of the medical profession, we are constant and 
expensive consumers of the system, a system that is designed to deny us 
benefits. We should all be writing letters to our respective congressional 
representatives to support national health care. 

The people on this listserv should be jumping up and down and trying to 
educate others who don't suffer from the stigma of a chronic illness about 
how necessary the regulation of our insurance and health industries is...to 
give those of us who fall into an "unacceptable risk pool" an opportunity to 
obtain health insurance without prejudice and the almost certain risk of 
denial once you carry a CP diagnosis.
 -
Robin H. (CA)


Advice: Read another story about the difficulty of getting health insurance with a major pre-existing condition. Thanks to Robin, and Carolyn Bloom, for the source posting to pancreatitis@YahooGroups.

Thursday, December 3, 2009

There can be a big payback: Testimony on Massachusetts state funding for patient safety

This was my testimony today on state funding:

Secretary Bigby, Commissioner Auerbach, and other executives,

Thank you for the opportunity to testify.

I'm Ken Farbstein, President of the Consumer Health Quality Council of Health Care for All. We'll submit more formal written testimony to add to this personal oral testimony.

Our Council is mostly people who had a serious medical error in their own family. At our last meeting, my friend Kim came and told us about his mother's death from a hospital acquired infection. (I'm glad the DPH is reporting those, as that can persuade hospitals to become safer.) And we heard from another man, Lee, whose girlfriend died needlessly in a hospital. If the Rapid Response Methods section of the law had been in place then, and if he knew about it, she might well be alive today. (I'm glad that DPH can collect information about hospitals' use of Rapid Response Methods.) One of our long-time members didn't come to our last meeting, because her new leg prosthesis was still uncomfortable. She needed one after more than 20 operations following a very serious hospital-acquired infection.

Yesterday a work group of our Council reviewed the hospitals' plans for their Patient and Family Advisory Councils, required by Chapter 305. We were happy to learn that consumers on one hospital's advisory council got the hospital to extend visiting hours to 7x24, so family members can be with their loved ones when they're most vulnerable and afraid. If all hospitals plan and conduct these advisory councils, a lot more good ideas like that will become reality. If DPH can help make those ideas known – IF they have money for someone to look, and discover them, so much the better.

I firmly believe that reporting errors keeps providers more mindful of the need to make their systems safer. It doesn't take much of DPH's time to gather and report that, and there can be a big payback. Of course, DPH needs the funding to keep doing that. I hope you give them, and the Betsy Lehman Center, what they need.

Advice: It's a citizen's job to keep his mouth open.

Read another story about Chapter 305 testimony.

Monday, November 30, 2009

That delivers to little for Nebraskans: Senator Ben Nelson and the public option

The U.S. Senate begins debate on the health reform bill today. Certain centrist Democrats like Sen. Ben Nelson of Nebraska will have a pivotal role in deciding whether consumers will have a public option if private insurance is unavailable, unaffordable or undesirable.

Nebraska's chief medical officer is calling for more diagnosis and treatment of people with diabetes. Dr. Joann Schaefer of the Nebraska Department of Health and Human Services says that 104,000 Nebraskans have diabetes, and an additional 250,000 have it but have not even been diagnosed. The medical and indirect costs in Nebraska amount to $750 million each year, according to the Associated Press story on Saturday in the Sioux City Journal.

Senator Nelson said on Nov. 20, in a press release on his website, "The Senate should start trying to fix a health care system that costs too much and delivers too little for Nebraskans." It seems the private health insurance system there has failed 250,000 of his citizens.

Advice for Nebraskans: Call Sen. Nelson at 202-224-6551 and tell him you want a public option in the health reform bill.

Read a story about the life-saving benefit of universal health insurance.

Wednesday, November 25, 2009

They've beaten long odds: The diagnosis and labeling of Asperger's

Dan Coulter's advice:
My son and I have Asperger's syndrome. I've written, produced and directed 10 DVDs about Asperger's syndrome and autism. I've just finished a DVD about people who have beaten long odds and found steady employment. A common link among these employees is that they all disclosed the condition to their employers, got some reasonable accommodations and worked hard to modify challenging behaviors.

Changing the diagnosis to "autism spectrum disorder" will make job applicants less likely to disclose – and employers less likely to understand and accept – their capabilities and challenges.

In the real world, continuing to use the diagnosis of Asperger's syndrome as a condition in the autism spectrum does no harm and will help talented, deserving people find and keep employment.

The diagnosis of Asperger's syndrome should be maintained in the Diagnostic and Statistical Manual of Mental Disorders.

Read another Aspergers story. Thanks to the Letters editor of the New York Times for printing Dan's letter on Nov. 16.

Tuesday, November 24, 2009

I was broad-sided: Rolling meta-analyses to detect drug side effects

Anthony De Carlo's story:
In an auto accident on 6/15/01 in New Jersey, I was broadsided by a woman on a phone running a red light. I was in the hospital three days, banged up. I hurt my knee and back when I was hit.

I took Bextra for two years, 
and Celebrex. I have had one heart attack and two smaller heart attacks. An EKG revealed I have had three silent strokes, one in 2003 while I was taking Bextra and also Celebrex. I later had the EKG confirmed at a teaching hospital in New York City. I was also diagnosed with a deteriorating heart valve, which will probably require surgery.

Due to complications, I am disabled and can't work.



Though studies had been performed about the side effects of Bextra, the results had not been put together. If they had been, the dangers of Bextra would have been known years sooner. Instead, many people like Anthony suffered from major side effects. Eventually, Pfizer took Bextra off the market in 2005, acknowledging its dangerous increase in heart attacks and strokes.

Drug makers have removed several other drugs from the market after learning of their health problems. In the most recent issue of the Archives of Internal Medicine, Dr. Joseph Ross and his colleagues describe a method of statistically pooling data on drug effects in a rolling meta-analysis that could have informed Merck of the cardiovascular effects of Vioxx years before it withdrew the highly profitable drug from the market. Dr. Michael Steinman mentioned Bextra as a case in point, and added several other examples: Bayer removed the cholesterol-lowering drug Baycol from the market in 2001 after reports of serious muscle problems. Novartis withdrew Zelnorm, a drug for irritable bowel syndrome, from the market after learning of its increased risk of heart problems.

Advice: Read the story of a whistleblower on the BBC website.

Read another story about Vioxx. Thanks to Natasha Singer for the source story in today’s New York Times.

Sunday, November 22, 2009

Half the rate in the U.S.: Mammograms and physicians' learning curve

The recent change in recommended mammography screening stems from a concern that the huge number of false positive readings led too many women to get unnecessary surgery, and to feel great needless anxiety.

Doctors who read a lot of mammograms are far more accurate than those who don't. To be a mammographer, the United Kingdom requires their radiologists to read ten times more mammograms than the U.S. does. That explains why the rate of false positives (when they say there IS cancer, when there really isn’t) in the U.K. is only half the rate in the U.S. A study in the Journal of the National Cancer Institute by Dr. Rebecca Smith-Bindman and others of mammograms in the U.S. confirms a similar pattern. In the largest study of its kind, they found that radiologists who read 2,500 or more mammograms each year have a false positive rate half that of radiologists who read 480 - 750 per year. And the radiologists who read the most mammograms are just as likely to detect breast cancer when it exists (in other words, their false negative rates are just as good as those of their less experienced colleagues).

Read another story about a mammogram.

Advice to women: Before your next mammogram, find a doctor who does more than 2,500 a year.

Saturday, November 21, 2009

The only problem: Impersonal hospital care

Dr. Dena Rifkin's plaint:
A close family member was recently hospitalized after nearly collapsing at home. He was promptly checked in, and an EKG was done within 15 minutes. He was given a bar-coded armband, his pain level was assessed, blood was drawn, X-rays and stress tests were performed, and he was discharged 24 hours later with a revised medication list after being offered a pneumonia vaccine and an opportunity to fill out a living will.

The only problem was an utter lack of human attention. An E.R. physician admitted him to a hospital service that rapidly evaluates patients for potential heart attacks. No one noted the blood tests that suggested severe dehydration or took enough history to figure out why he might be fatigued.

A doctor was present for a few minutes at the beginning of his stay, and fewer the next day. Even my presence, as a family member and physician, did not change the cursory attitude of the doctors and nurses we met.

Yet his hospitalization met all the current standards for quality care.

As a profession, we are paying attention to the details of medical errors – to ambiguous chart abbreviations, to vaccination practices and hand-washing and many other important, or at least quantifiable, matters.

But as we bustle from one well-documented chart to the next, no one is counting whether we are still paying attention to the human beings. No one is counting whether we admit that the best source of information, the best protection from medical error, the best opportunity to make a difference – that all of these things have been here all along.

The answers are with the patients, and we must remember the unquantifiable value of asking the right questions.

Advice: Find a doctor who will take time with you.

Read another story about impersonal hospital care. Thanks to Dr. Rifkin for the source story in the NY Times of Nov. 17.

Friday, November 20, 2009

After another week on dialysis he called back: Kidney donation

The first patient to list himself publicly on MatchingDonors.com was Bob Hickey, a psychologist in his mid-fifties who'd learned he had kidney cancer. At first, he'd done what his doctor told him to do: he went on dialysis, signed up on the official waiting list for a cadaver kidney in his region, and hoped that he would reach the top of the list before he died. His transplant center told him that he should expect to wait about four years.

On dialysis, you are attached to a machine for several hours at a time, usually three or four times a week, while the machine siphons off all your blood, cleans it of toxins, and injects it back into your body. Often the process leaves you too exhausted to work, or do much of anything besides recover. After four and a half years of dialysis, Bob, still waiting on the list, decided he'd had enough. He would rather die.

Less than a month later, he saw a newspaper article about a new company starting up – MatchingDonors. Bob phoned them, and the head of the company told him the service cost $295 a month, or $595 for life. Bob told him he was a carpetbagger and a rip-off and hung up. After another week of dialysis, he called back and signed on. Within a month, he had dozens of offers.

He screened them into a smaller set, and picked one at random: Rob Smitty of Chattanooga, Tennessee. The two men talked on the phone, and agreed. Bob was so excited that he jumped in his car and drove from Vail to Denver, more than 100 miles, to the transplant center to deliver the good news. The transplant center staff cautioned him, but accepted Rob as a donor.

Surgeons performed the transplant in October, 2004. Ever since, Bob has made kidneys his life's work. He advises people who are considering transplants. He raises money to compensate donors for expenses and lost wages. (Other forms of compensation for donors are illegal.) And he's fighting the kidney establishment on several fronts.

Advice: Read the stories at MatchingDonors.com

Read another story about a kidney match through MatchingDonors. Thanks to Larissa MacFarquhar for the source story in the New Yorker of July 27.

Saturday, November 14, 2009

He doesn't call, he doesn't write: Patient Family Advisory Councils for medical groups

I got an automatic phone call from my pharmacy the other day, telling me that my prescription was ready for pick-up. And an automatic phone call from our temple president about upcoming events I might want to participate in.

But during the current H1N1 scare, I haven't received an email from my doctor telling me what to do. He doesn't call, he doesn't write – does he care about me? And my daughter hasn't received an email or pro-active call from her pediatrician about it either. Why not?

There are many reasons; perhaps one of them is so obvious that no one sees it: No one told them to. No consumer advisory group said, "Doctor, in this day and age of free email, where the vast majority of your patients have an email address, it's time for you to advise them on vaccinations, prevention and treatment for H1N1 by email." Indeed, that would probably save a lot of time and hassle for the doctors' administrative staff, who wouldn't need to explain the same information for the thousandth time.

Hospitals have made many innovative changes as a result of suggestions by their patient/family advisory councils. We should encourage medical group practices to form advisory councils and hear their ideas. The time they save could be their own.

Advice: Write a note about this to your doctor and ask the doctor's office manager to make a suggestion box and put your note in it.

Read a patient/family advisory council story.

Friday, November 13, 2009

Think Olive Garden: Innovative Patient/Family Advisory Councils

The CEO of Beth Israel Deaconess Medical Center recently had the pleasure of touting a major national award for patient satisfaction won by their NICU (neonatal intensive care unit): the Family-Centered Care Award, by the Society for Critical Care Medicine. I hope to describe their advisory council's role in that in a future blog post. In an earlier post on the role of the Advisory Council for the adult ICU, Paul Levy described their use of Family Pagers:

Our Advisory Council pointed out the feeling that they had to stay in or near the ICU at all times, in case anything happened. We now provide pagers (think Olive Garden) to families that allow them to go to the coffee shop, cafeteria, and nearby shops with the confidence that we can page them if they are needed. These have received rave reviews from families, nurses, and doctors alike.

Massachusetts General Hospital has been using several patient/family councils. One helped develop a "pathway for cardiac services" that portrays the steps in a patient's treatment, so patients will know what will happen during their hospital stay. I hope to describe this in more detail in a future blog post.

At Cooley Dickinson, the annual report in 2009 on the PFAC told of another committee involving consumers that performed "a SNF [skilled nursing facility, i.e., nursing home] hand-off communication survey, which resulted in an immediate improvement in patient and post-acute provider relationships through the discharge process."

BRAVO TO THESE PIONEERING HOSPITALS!


Advice to patient advocates: Tell your families and clients to get their care at hospitals like these that actively listen and heed the patient's voice.

Read another story about innovative patient/family advisory councils.

Thursday, November 12, 2009

At least they have a line to wait in: A death from lack of insurance

Sue was a 31-year-old patient of Ob-Gyn Dr. Linda Harris, in Oregon, as Nicholas Kristof writes in today's New York Times. Sue was a single mom who worked hard, sometimes two jobs at a time. Her jobs never provided health insurance, and she couldn't afford to splurge on herself to get gynecological check-ups. She went without a Pap smear for more than 12 years, though annual Pap smears are recommended. Even when she began bleeding and suffering abdominal pain, she was reluctant to see a doctor because she couldn't afford it.

She eventually sought help from a hospital's emergency room, and then a public clinic where Dr. Harris works, only to learn that she had advanced cervical cancer. Three months later, she died. Her daughter was 13.

Her death didn't have to happen. Cervical cancer has a long pre-invasive stage that can be readily detected by a Pap smear, and treated with a relatively minor procedure.

"People talk about waiting lines in Canada," Dr. Harris says, adding, "Well, at least they have a line to wait in."

As Kristof notes, national health reform would cost about as much each year as a year of our continued fighting in Afghanistan. Both purport to save lives. Viewed with the cold, hard lens of cost-effectiveness, financial prudence would clearly lead us to prefer saving the 45,000 people like Sue whose lives were lost from lack of insurance, according to a Harvard study published in September, over the very few who die from terrorist acts each year.

Advice: Share this with conservative legislators who are concerned about our government's return on its investment.

Read a much happier story about a lack of insurance. Thanks to Nicholas Kristof for the source story.

Wednesday, November 11, 2009

A pinstriped evangelist: V.A. Secretary Shinseki's advocacy for veterans

The New York Times wrote today that Eric "Shinseki has been criss-crossing the country as Pres. Obama's pinstriped evangelist for veterans' care, raising concerns about a coming tide of post-traumatic stress cases, traumatic brain juries and other physical and psychological scars of battle."

He says, "What's natural for me is trying to tell the story that soldiers need told. It's not my story, it's their story." Nonetheless, his own story of losing a part of his foot in combat in Vietnam is instructive. He says, "All of us who went through combat, we were carrying a little baggage from the experience, the stress."

A former general, Shinseki won notoriety by speaking truth to power, warning Pres. Bush of a shortage of American troops in Iraq. Now continuing to state the truth as he sees it, he has requested what would be the largest single-year increase in the budget of the Department of Veterans Affairs in 30 years.

Advice: Share this story with a vet, and remind them that help may be available if they want it.

Read a story about our veterans. Thanks to James Dao and Thom Shanker for the source story.

Tuesday, November 10, 2009

The suffering they save may be their own: A registry for medical devices in the House’s health reform bill

The U.S. House of Representatives passed the healthcare reform bill (H.R. 3962) over the weekend - an historic achievement. The long bill is being analyzed; one underappreciated piece calls for a national registry for medical devices, in Section 2571, on page 1501.

People like Stephen Csengeri will benefit. The registry will allow for common defects in a specific device to be discovered more quickly, in time to dissuade other patients from using them and suffering similar results.

Bravo to the members of Congress who voted for the bill! The suffering they save may be their own…

Advice to those considering an implanted medical device: For now, you'll need to research the specific make and model of the device on the Internet to learn of any common problems, and ask your surgeon about them.

Read a story about a medical device error.

Saturday, November 7, 2009

The alternative was to have no insurance: Betting on good health

Carl Arrington, 58, is a free-lance writer and chef in New York. When his company closed shop nine years ago, at first he chose to pay for extended coverage under COBRA. But the high premiums forced him into a difficult decision: he dropped the insurance.

"The alternative was to have no insurance, which was so scary in the beginning," he said. "And then I decided, look, when you have insurance you're betting that you're going to get sick."

He decided to change his lifestyle. He stopped eating meat, and cut excess sugar from his diet. He began to exercise, eventually losing 40 pounds.

He still sees his physician annually for checkups, but he avoids screening tests like colonoscopies. If doctors discovered something that needed further treatment, he said, he probably could not afford it anyway.

"I am in control of my health, and I'm not afraid of dying. What more do you need?" he asks.

Advice: Stay healthy – and work for universal health insurance.

Read another story about a limitation of the COBRA safety net.

Thanks to Karen Barrow for the source article in the New York Times of Nov. 4, and to Alex di Suvero.