Outside the chemo treatment room: Insurance denials

From Nicholas Kristof's column:

I regularly receive heartbreaking emails from readers simultaneously combating the predation of disease and insurers. One correspondent, Linda, told me how she had been diagnosed earlier this year with abdominal and bladder cancer – leading to battles with her insurance company.

"I will never forget standing outside the chemo treatment room knowing that the medication needed to save my life was only a few feet away, but that because I had private insurance it wasn't available to me," Linda wrote. "I read a comment from someone saying that they didn't want a faceless government bureaucrat deciding if they would or would not get treatment. Well, a faceless bureaucrat from my private insurance made the decision that I wouldn't get treatment and that I wasn't worth saving."

Advice: Insist that your representatives in Congress vote for a public plan that will cover people like Linda.

Read another story on an insurer’s denial of chemotherapy treatment.

Thanks to Nicholas Kristof for the source column in today's New York Times.

I can’t hear you while I’m listening: Communicating with your doctor

A stethoscope amplifies inaudible heart and lung sounds in a very satisfying way. If, however, the owner of the organs under evaluation decides to make a comment during the exam, what results is a painfully loud, unintelligible blast of noise directly into the doctor's head.

It was during such an interruption almost 30 years ago that Dr. Richard Baron, a Phiadelphia internist, grumbled at his patient: "Shhh. I can't hear you while I'm listening." The phrase has undoubtedly been said by many, but Dr. Baron was the one with the wit to stop and laugh (and reflect at length in a classic medical article), realizing that he had enunciated in pure koan form probably the single greatest tension in modern medical practice.

Against the siren song of all those beautiful instruments and machines, whatever the patient has to say is sometimes just an annoying interruption.

This is a caution about the use of technology. It's also a caution to patient advocates, to ensure we don't get in the way of the doctor's listening to the patient.

Advice: Find a doctor who listens to you – and do your part by enabling him or her to listen fully, in every sense of the word.

Read another physician listening story. Thanks to Dr. Abigail Zuger for the source story in the New York Times on Oct. 27.

Before he had health insurance: The public option in health insurance reform

On this scary Halloween, it's comforting to see that the U.S. House of Representatives is including a public option in its healthcare reform bill.

The House bill, if it passes, could save the lives of many very ill people – like Fred Holliday. With insurance coverage for a physical exam, Fred might have received prompt detection and treatment.

Dr. Rahul Parikh describes what had happened instead, as told to him by Fred's widow, Regina Holliday:

Fred Holliday developed the early symptoms of his disease-fatigue, weight loss and occasional blood in his urine - before he had health insurance. In late 2008, his insurance kicked in after he got a job at American University teaching film studies. Last January, he developed low back pain. He went to see his doctor multiple times. Each time, she prescribed pain medication, but his pain worsened. Regina wondered: if Fred just had muscle pain, then why the night sweats? Why the blood tinged urine? Why didn't his clothes fit him anymore? Still, Fred's doctor didn't reconsider her diagnosis and treatment.

His pain worsened. In March, Regina demanded more. Fred's doctor ordered an MRI of his back. Three days later, they got a call telling them that he had "shadowing over his kidneys." What that meant wasn't entirely clear, but the next thing Fred and Regina knew, they were in the office of a Maryland oncologist, who admitted them to a hospital in Silver Spring for further tests.

On Friday, March 27 around 11 am, Regina was at work when Fred called. He was crying. "I think the doctor just told me I have cancer," he managed to tell her.

What exactly did the doctor say? Fred remembered being told that he had a growth on his kidneys. Regina rushed into see the doctor, but he had left town for the weekend. They had to wait until the next day before another doctor (not an oncologist) tried to clarify his diagnosis: it looked like he had stage IV metastatic renal cell carcinoma. That jumble of words didn't make any sense. Regina went onto the Internet. Wikipedia turned out to be more helpful than Fred's doctors.

When their oncologist returned, he was curt and often distracted by his cell phone. He didn't like Regina's detailed questions, telling Fred that, "If Miss type-A personality wants me to answer her questions, she can come to my office hours."

In retrospect, Regina believes that if Fred's doctor had been clear about his prognosis from the beginning, he may have made the decision to stop fighting sooner. Instead, he informed him of how he could fight: surgeries, radiation, and chemotherapy. So he decided he needed more advanced care than what Holy Cross could provide.

Patient transfers between hospitals are normally the responsibility of doctors who work there. The hospital's doctors, however, told her they had not been able to find another center willing to accept him. So Regina contacted her own internist, who sat on the board of directors at a hospital in Bethesda. After hearing Fred's story, he pulled strings and arranged a transfer.

The Hollidays arrived at there four weeks after Fred's diagnosis. The first thing they learned was that he needed surgery to repair a broken hip - which happened after an orderly at the first hospital bumped him into a wall while he was moving Fred on a gurney. Fred had been complaining of severe hip pain for two weeks, but nobody there had followed up on it. All it would have taken was an x-ray.

After surgery, his new oncologist ordered a chemotherapy drug called Sutent. While his health insurer approved the drug, Fred's doctor told Regina that the pharmacy refused to order it. At $40,000 for a 28-day supply, it was too expensive. "Sometimes this happens," Fred's doctor told her. So Regina had the drug mailed home, picked it up, tucked it safely into a fanny pack, and dispensed a dose to her husband each day.

Fred's cancer advanced. He still couldn't walk. He had become incontinent. The doctors decided to transfer him to a rehabilitation center with the goal of getting him to walk again. Once he was there, Regina’s duties as his caregiver intensified. She learned where the center's storage closets were so she could collect fresh sheets and change them herself. She emptied his trash, and changed and disposed of his bedpans.

While he was in the hospital, Fred required blood transfusions every 10-14 days. Regina knew when he needed them because he would begin to get very tired, eat, move, and talk less. One afternoon, this is just what happened. At the hospital, it was easy to ask the nurse to get a blood test to know just how low his counts were. In the rehab center, they only did blood tests once every morning, no exceptions. So Fred suffered until morning came and his test confirmed what he and Regina knew the day before.

Fred would had to be re-hospitalized. Fred continued to deteriorate. It quickly became a question of how much longer to fight. On May 19th, he was moved to hospice care to get his pain under control and on June 11th, he went home. On June 17th, less than three months after he was diagnosed with cancer, Fred Holliday died at home. Ironically, this was the same day that the United States Senate began debating health care reform.

Advice: Call your congressman and ask them to support health insurance reform with a strong public option. Commercial insurers might prefer not to insure someone like Fred - or like you.

Read another story about the lack of health insurance. Thanks to Dr. Rahul Parikh for the source blogpost, and e-patient Dave Bronkart.

Magnificent at times: Jeremiah Mead & advances in respiratory research

In the famous joke by Woody Allen, two Jewish women are commenting on the food at a resort in the Catskill Mountains. One says, "The food is terrible here." The other responds sadly, "And the portions are so small!"

I often feel that my comments on healthcare are similar: It's so bad. And there's way too little of it! Yet sometimes I realize that our healthcare is also magnificent at times, and life-saving – as in the healthy birth of my son, 19 years ago.

My wife started labor nine weeks prematurely. Doctors were able to stop the labor from progressing, and gave my son the drug beta dimethasone to speed the maturation of his lungs. In a fetus' development in the third trimester, the walls of the lungs initially stick together, and can’t inflate with air, until a chemical surfactant is released. At that point, the lungs can inflate and deflate appropriately, readying the baby to breathe upon birth.

If a baby is born prematurely, before the surfactant changes the lungs in this way, respiratory distress syndrome can result, often fatally. In the past, this caused the deaths of 50,000 premature babies each year.

My wife got the drug in time, and it somehow made its way to Neil's lungs, triggering the release of the surfactant, before he was born a few days later. He didn't get RDS, and he didn't need a ventilator. He has long been in excellent health, and he's bigger and more muscular than me now.

Dr. Jeremiah Mead was the scientist who discovered the role of the surfactant, and opened the way for a series of discoveries that now make RDS much less frequent. I learned this only in reading his obituary; he died at age 88 in mid-August.

In a colleague's words, "his major contribution is that he set the agenda in respiratory mechanics, and posed the questions that everyone else picked up."

Read another NICU story.

Thanks to Emma Stickgold for the source article in the Boston Globe of August 18.

I freak out when he has a runny nose: PTSD in NICU preemies' parents

Kim Roscoe's son Jaxon was born three months early, weighing only two and a half pounds. For nine days he did exceedingly well in the NICU (neonatal intensive care unit). Then, on Day 10 he went into respiratory and kidney failure, and his body had swollen beyond recognition. "He was hooked up to ventilators, his skin was turning black, the alarms kept dinging over and over," Kim recalls.

Jaxon is 16 months old now, home with his family. In the NICU for 186 days, he survived several near-death episodes.

During the six-month ordeal, his mother had constant nightmares. She became angry at the world, and so jumpy that she once thought that a supermarket scanner was one of Jaxon's monitors going off.

About three months after Jaxon's birth, she asked to see a psychiatrist. She received a diagnosis of PTSD (post-traumatic stress disorder). Doctors are increasingly recognizing PTSD among parents of premature infants in prolonged intensive care, according to a recent study in the journal Psychosomatics.

"The NICU was very much like a war zone, with the alarms, the noises, and death and sickness," Kim said. "You don't know who's going to die and who will go home healthy."

Experts say parents of NICU infants experience multiple traumas: the shockingly early birth itself, traumatic medical procedures and life-threatening events, and hearing very bad news that can keep coming.

Kim says that now she's coping with great anxiety about Jaxon, even now: "I still freak out if he has a runny nose. And when he gets a fever, I'm back in the NICU."

Advice to stressed parents of a NICU preemie: Keep in mind that there are very happy endings. My very healthy son just entered college, 19 years after his three-week stay in a NICU. Contact the March of Dimes NICU Family Support program, which offers psychological support to parents in 74 hospitals nationwide.

Read another NICU story.

Thanks to Laurie Tarkan for the source article in the New York Times of August 25.

Turning patients into scientists: Open source research like the LAM Treatment Alliance

After Amy Farber learned she had the rare and fatal disease called LAM (“lymphangioleiomyomatosis”) in 2005, she became determined to increase and speed up research into her illness, with the hope of finding a cure in her lifetime.

Now 39, she was a law student with a doctorate in anthropology, about to start a family. She quit law school and founded the LAM Treatment Alliance to raise money and connect a network of scientists around the world to research this mysterious disease, which destroys young women’s lungs.

With the help of Frank Moss’ Media Lab at the Massachusetts Institute of Technology (MIT), she created LAMsight, a Website that allows patients to report information about their health, then turns those reports into databases that can be mined for observations about the disease.

Amy Farber says this will empower patients to contribute, ask questions, and help lead the way to discoveries. Frank Moss agrees, adding that patients’ everyday experiences in living with the disease can generate new hypotheses and avenues for research. “We’re really turning patients into scientists and changing the balance of power between clinicians and scientists and patients,” he says. Supporters of this model call it “crowd sourcing” or “open source research,” and praise its democratization of research.

She hopes her website will become the largest database of active LAM patients. More than 100 registered users on five continents are already using it.

Advice to patients with rare diseases: Search the Web to see if a similar website is speeding research into your disease.

Read another story about PatientsLikeMe, a similar website for other rare diseases.

Thanks to Sarah Arnquist for the source article in the New York Times of August 26.

I was lucky: Lance Armstrong's pre-existing condition

Lance Armstrong's letter of October 2, 2009:
Today is LIVESTRONG Day. Thirteen years ago today, my doctor told me I had advanced testicular cancer. What most people don't know is that at the time, I didn't have health insurance. In the following weeks, I received letter after letter from the insurance company refusing to pay for my treatment. I was fighting for my life—but also for the coverage that I desperately needed.

The legislation currently being debated in Congress is not just words on a page—for many cancer survivors, it's a matter of life and death. Now, as this debate enters crunch time, I need your help to ensure that what happened to me doesn't happen to any other American.
No matter what side of the healthcare debate you're on, I believe we can all agree on two things:

No American should be denied health insurance coverage because of pre-existing conditions.
No American should lose their insurance due to changes in health or employment.
Will you sign the LIVESTRONG Action petition to make sure any legislation includes these two critically important reforms? We'll deliver these to Capitol Hill this month as the debate reaches its climax and make sure our voices are heard in the debate.

When I received my diagnosis, I was between cycling contracts. My new insurer used the diagnosis as a reason to deny coverage after the new contract was signed. Fortunately, one of my sponsors intervened. At their insistence, I was added to their insurance company and was able to continue my life-saving treatment. If my sponsor, a powerful company, had not gone to bat for me, I may not have made it.

I was lucky. We can't rely on luck to ensure coverage and treatment for the millions of Americans affected by cancer. Some cannot get coverage because they've already been diagnosed. Others get calls from their insurance companies saying they have been dropped. It happens all the time—and it's unacceptable.

Every year on LIVESTRONG Day, we come together to take action for a world without cancer. In the U.S., a critical step is to make sure cancer survivors can get and keep their health insurance.

It has been 13 years since my diagnosis, but in some ways, not much has changed. No person should have to worry about health insurance while battling cancer. That so many do is an outrage, and we must speak out.

-Lance and the LIVESTRONG Action Team

Advice: Please sign the petition and forward it along to your friends and family.

Read another Lance Armstrong story. Thanks to Hari Khalsa for forwarding the email.

Write on the incision site: Wrong site wrist/finger surgery

Here is an example of what has been reported and the initial changes made as a result of Massachusetts hospitals' analyses of "serious reportable events," as required in the new Chapter 305 state law.

A Spanish speaking only patient was admitted for surgery to release a left trigger finger, a condition where the finger catches in a bent position and straightens with a snap; instead she had a carpal tunnel release, a completely different operation on the wrist and not the finger.
This mistake was not discovered by the team in the operating room, but by the doctor when he returned to his office and looked at the patient's medical record.

To avoid this error from recurring, the hospital changed its policy from having the surgeon sign the side of operation to requiring the surgeon to sign the actual incision site. Also in this case, not all team members participated in the time out. In response, two more important issues were addressed by the facility: first, the policy was changed to require the presence of an interpreter for non-English speaking patients, so they could answer questions about the operation and verify the site, as required by the Universal protocol; and second, a revised hand-off routine was instituted to accommodate changes in staff immediately before and during the operation.

Advice to surgical patients: Have the surgeon mark the incision site, not just the correct side of your body – or mark it yourself.

Kudos to Dr. Stancil Riley, Tracy Gay of the Betsy Lehman Center, and Elizabeth Daake of DPH to helping this happen and making this available at the Massachusetts Department of Public Health's website.

Read another wrong-site surgery story.

Visiting Hours Are NOT Over: Innovative Patient/Family Council Hospitals in Massachusetts

In my role as President of the Consumer Health Quality Council, I had the privilege of participating in a training session for Massachusetts hospitals yesterday on starting their patient/family advisory councils. These speakers mentioned specific improvements in partnering with patients that their councils have already inspired:

Susan Shaw of Children’s Hospital of Boston described many changes, e.g., the welcoming patient guide, the redesign of Family Sleep Space, and "Executive Family Walk Rounds," among others.

Karen Conley described how South Shore Hospital has greatly extended its visiting hours, focusing on the Emergency Department, Intensive Care Units (ICUs) and PACU. In the past, every evening the loudspeaker would intone, "Visiting Hours Are Now Over," forcing family members to leave their ill, scared, and vulnerable loved ones at their moment of greatest need. After this announcement was eliminated, the number of formal grievances fell by 94% from one year to the next! South Shore Hospital began using family-initiated rapid response teams in June (I hope to report more on this soon) and has several other very exciting ideas in development from its council.

At my visit a few weeks ago to the pediatric family advisory council of Dana Farber Cancer Institute, Maureen Connor's team mentioned that parents had asked for and received a washer and dryer on the kids' floor so that the parents themselves could help keep their kids' bedding and clothes clean.

BRAVO TO THESE PIONEERING HOSPITALS! It's worth noting that none of these ideas costs hospitals much, if any, money, and yet mean a lot to patients and their families. I hope patients will tell their primary care providers and friends about these practices, so more patients get their care at those patient-friendly hospitals.

At the Consumer Health Quality Council of Health Care for All, we're asking Massachusetts hospitals to send us their plans as they complete them by the end of the month, so we can learn about and publicize more of the innovative ways that hospitals are becoming more patient-friendly.

Advice to patient advocates: Steer your clients to hospitals with productive and imaginative Patient/Family Advisory Councils.

Read our Council's testimony on the new Chapter 305 law that mandates these patient/family advisory councils. Thanks to Paula Griswold and Effie Brickman of the Massachusetts Coalition for the Prevention of Medical Errors, and Tracy Gay of the Betsy Lehman Center, for organizing the series of conference calls as training sessions. Thanks to Marlene Fondrick of the Institute for Family-Centered Care for sharing IFFC's knowledge and resources in the calls. Thanks for the legwork by Linda Burgess, Nicola Truppin, Deb Wachenheim, and Alec Ziss of the Consumer Health Quality Council's work group on Patient/Family Advisory Councils.

For all of them on this Jewish New Year, may they be written in the Book of Life.

David, Goliath, Max Baucus, and Nikki White: The Senate Finance Committee's plan for national health insurance

Nikki White was a slim, young and athletic college graduate. She had a job, and health insurance. At 21, she had been diagnosed with systematic lupus erythematosus, a chronic inflammatory disease that gradually weakened her to the point where she could not work. When she lost her job, she lost her health insurance. She tried everything to get medical care, writing letters for months, but no insurance company would accept her because of her costly pre-existing condition.

Finally, she collapsed when at her home in Tennessee, and was rushed to the Emergency Department. She received plenty of free care, including six months in an intensive care unit (costing taxpayers hundreds of thousands of dollars). It was far too late, and she died in 2006 at age 32.

Every 12 minutes, an American like Nikki dies. You read it right, and I’ve checked the math. That's the key finding of a study that determined that 45,000 Americans die each year from the lack of health insurance.

The same day the study was released, the value of insurance company stocks rose on the news that Sen. Max Baucus submitted the Finance Committee's health insurance plan. Investors believe that Baucus' scheme would be highly profitable for insurers, who will gain millions of paying customers. Insurers would not have to compete against a public program. Instead, these highly experienced, financially stable Goliaths would compete against nonprofit co-ops, i.e., young start-ups. Insurers are adept at cherry-picking the healthiest, least expensive people to insure, likely leaving the sicker, more costly uninsured people for the nonprofit co-ops. It's easy to guess who'll profit in that marketplace. That's why insurance stocks rose.

Here in Massachusetts, we don't have this problem. Here, Nikki would be alive. We have some excellent insurers – and near-universal health insurance.

Advice to non-Massachusetts residents: Move here. If you don't want to do that, call your senator or congressman and insist they support a public option for health insurance.

Read how universal health insurance saved someone’s life. Thanks to Nicholas Kristof for the source story in the New York Times of Sept. 13, and Dr. Andrew Wilper et al in the December 2009 [sic] issue of the American Journal of Public Health.

If you can fix me, please do: A living will

Here's Dr. John Dykers Jr.'s end of life plan, in a letter to Annie's Mailbox:

I'm glad you brought up the end-of-life plan dilemma faced by 'Aunt Thelma, Uncle John, and my Marie.’'I am a doctor, and my patients have embraced my own end-of-life plan as follows:

"If you can fix me, please do. If you can't fix me, please help me avoid pain, fear, lack of air, hunger, nausea, thirst, loss of dignity, and prolonging the dying process. I understand it might take a few days for you to figure out whether you can fix me or not."

This format helps facilitate conversation between generations without the feeling of abandonment. Most of us old folks don't fear death as much as the process of dying or prolonged disability.

Advice: Send this to your parents, suggesting it as a default living will. If they want to revise or discuss it, so much the better.

Read another living will story. Thanks to Dr. Dykers, whose letter appeared in the Boston Globe on Sept. 9.

The best way to spend September 11: Rapid response teams

Eight years later, today on Sept. 11, I still feel the impact of the terrorist attacks.

I had the pleasure of spending much of the day in planning how to greatly improve the health of people in Eastern Massachusetts. Babra Rabson of Massachusetts Health Quality Partners and Prof. Stuart Altman are leading a large-scale collaborative called Aligning Forces for Quality (AF4Q), and I'm participating on its Leadership Team.

In today's meeting we discussed broad goals we might pursue. My own vote was to encourage the use of rapid response teams in hospitals to prevent cardiac arrests in the hospital. Cardiac arrests in the hospital are very common; there are hundreds of thousands of them in the US each year, according to an article by Dr. Kerry Voorhis and Dr. Tina Willis in Pediatric Clinics of North America in 2009. Resuscitation attempts are made on roughly 30 hospital inpatients a day in Massachusetts, but they usually fail to save the patient's life. Warning signs like a change in the breathing rate, blood pressure, or confusion usually appear several hours before the cardiac arrest. Doctors and nurses can be trained on the hospital's process for intervening before a resuscitation (a code team) is needed. Family members can be informed that they can urge a rapid response team if they notice their family member's condition has deteriorated suddenly. This is a new law in Massachusetts; it's a requirement by the Joint Commission on Accreditation of Healthcare Organizations, and is a recommendation of the Institute for Healthcare Improvement.

The wide use of these rapid response teams should save many people's lives. The cost of doing so is slight. There may even be a financial reason to do this, as surviving inpatients will live on to keep paying insurance premiums.

The leaders of the AF4Q collaborative will choose an ambitious goal that will save lives of Massachusetts residents. They may well choose a different focus. In any event, I feel grateful to contribute to the discussion, and I feel this was the best way to spend September 11.

Advice for September 11: Spend the day in community service to make life better.

Read another story about rapid response teams.

Thanks to Helen Haskell of Mothers Against Medical Errors for emailing the source articles, and for inspiring South Carolina's Lewis Blackman Act.

Now that he has fallen: Teddy Kennedy's contribution

As author John James says, "I remember the days early in my adult life when I believed that a more socialized system of healthcare was overdue in America. Ted Kennedy was a hero of that vision, and I bought one of his books. Once I became a 'responsible' adult my personal wellbeing trumped any social goals I had at a more equitable healthcare system...until that healthcare system took my son's life."

Ted Kennedy starts his 1972 book: In Critical Condition - The Crisis in America's Health Care with this:

"I am shocked to find that we in America have created a health care system that can be so callous to human suffering, so intent on high salaries and profits, and so unconcerned for the needs of our people. American families, regardless of income, are offered health care of uncertain quality, at inflated prices...Our system especially victimizes Americans whose age, health, or low income leaves them less able to fight their way into the health care system...It is an industry which strongly protects the profits but only weakly protects the healing and rights of people."

John James continues, "This was published 37 years ago and the pages on my copy of this book are turned a dingy yellow. Sadly, very sadly, the words of Senator Kennedy are more true today than they were 37 years ago. He ran the good race, but we must carry on now that he has fallen and the finish line is more distant than ever."


I'm also missing Teddy, who I increasingly realize was one of our greatest public health heroes. Here is a list of the healthcare laws he was influential in shaping, courtesy of the Massachusetts Hospital Association's Monday Report: The National Community Health Center Program; The Family Protection of Medicine Act; Meals on Wheels and the Women, Infants, and Children Nutrition Program; National Military Child Care Act; Ryan White CARE Act; Mammography Quality Standards Act; Human Services Reauthorization Act; Health Insurance Portability and Accountability Act (HIPAA); the Mental Health Parity Act; Children's Health Insurance Program; Minority Health and Health Disparities Research and Education Act; Pediatric Graduate Medical Education Act; Family Opportunity Act; and Genetic Information Nondiscrimination Act. In addition was his sustained strong support of funding for cancer research.

Advice to public health advocates: Take heart from Teddy's example.

Read another story about Teddy’s encounter with cancer.

We have become the ones: The passing of Sen. Edward Kennedy

Poverty is the biggest risk factor for poor health: poor people live shorter lives, with more disease and disabilities, than the rest of us. So for those who are passionate about improving public health, the loss of Teddy Kennedy is a particularly great setback.

He was influential in passing the State Children's Health Insurance Program (SCHIP) and the Americans with Disabilities Act, and raising the minimum wage, to name only three examples of laws that brought about big public health gains.

His compassion, tenacity, and joy, and his record of achievement, make him my hero.

With his passing, as Caroline Kennedy Schlossberg said in her eulogy, "we have become the ones who have to do all the things he would have done -- for us, for each other and for our country."

Read a blog post from last year aboutTeddy Kennedy’s final year.

Using himself as an example: Plaintiff Howard Engle's Progeny

Dr. Howard Engle passed away on July 22 at age 89, from chronic obstructive pulmonary disease. He had smoked multiple packs of cigarettes a day since college. Though he tried many times to quit, he never succeeded, and continued to smoke until his death.

His medical specialty had been pediatric neurology, and he frequently worked with cerebral palsy patients. He preached to his patients about the dangers of smoking, using himself as an example. "He wanted to teach people, especially kids, that smoking is not a good habit," said his son David.

Among his patients in the 1980s were the children of two medical malpractice lawyers, Stanley and Susan Rosenblatt. In 1991, the Rosenblatts brought a class-action suit against tobacco companies on behalf of flight attendants who had inhaled secondhand smoke, winning a settlement that cost the companies $300 million. Dr. Engle took a keen interest in the case.

Because he was a smoker with emphysema who wished to publicize the addictive nature of smoking, he agreed to become the lead plaintiff in a second class action suit, filed by the Rosenblatts in 1994. In 2000, the plaintiffs received the largest punitive award ever decided by a jury, for $145 billion. An appeals court voided the award as excessive and said the class of plaintiffs was too disparate. Later, the Florida Supreme Court let that ruling stand, though it allowed individuals to bring suit. Thousands of individuals have done so, and courts are now beginning to decide their cases – which are known as the Engle Progeny.

Advice: Use your standing and your personal network to fight for public health. Sometimes you have to sue the B*ST*RDS.

Read a very different ">class action lawsuit story.

Thanks to Bruce Weber for the source obituary in the Boston Globe of July 25.

Intervening before there’s drama: Rapid Response Teams

"A trigger [for a rapid response team] is not about excitement and drama; it's about intervening before there's drama," said Jeanne Quinn, a senior nurse on a unit for post-surgery and trauma patients. Minutes earlier, Judy Wagoner, a 29-year-old nurse with 2.5 years experience, had activated a trigger when her patient's blood pressure plunged to 56.

As the senior nurse on the floor, Jeanne responded and helped Judy gradually raise Carol Emerson's pressure back into the 100s. The team ordered an electrocardiogram to rule out underlying heart problems and a blood transfusion, and kept the patient an extra night. About 80% of the nurses on the floor have less than two years of experience, while Jeanne has 15.

No one knows for sure if early intervention helped Carol, who was in the hospital so surgeons could repair broken bones in her left arm, avoid cardiac arrest. And Judy said she would have asked for Jeanne's help even before the new rules.

But doctors believe the key to reducing patient mortality is to intervene at the first sign of trouble, before the patient "[cardiac] arrests," an emergency where the heart or lungs — or both— shut down.

Dr. Michael Howell, an intensive care specialist, hopes the Rapid Response team will prevent delays like one he described a few years ago to the Beth Israel Deaconess board of directors: Doctors admitted an elderly man to the hospital for gastric bleeding. When his systolic blood pressure dipped into the 80s, his nurse and an intern gave him intravenous fluids to push it back up to normal range. His pressure climbed back into normal range. Over the next eight hours, his blood pressure kept falling, and they kept pumping in fluids. Low blood pressure is generally not life threatening until it dips into the 70s or 60s. But they failed to recognize that the subtler decline masked a more serious underlying problem: massive stomach bleeding. The next morning, a senior doctor did, and transferred the patient to the ICU, which has the staffing expertise and equipment to intervene more rapidly. But it was too late.

"I don't know that we would have saved him," Dr. Howell said. "But it's absolutely possible."

Advice to family members of hospitalized patients: Find out how the hospital activates a rapid response team.

Read about Massachusetts legislation enabling family members to activate rapid response methods in hospitals.

Thanks to Liz Kowalczyk for the source story in the Boston Globe of Nov. 27, 2005.

What it could and could not do: Universal health care through the British National Health Service

Sarah Lyall's story:
As an American who lives in Britain, occasionally writes about the health service, and uses public and private medicine here (as well as back home, occasionally), I have seen firsthand the arguments from all sides.

For me, the Health Service was a godsend when my husband suffered a severe stroke in the 1990s. He got exemplary critical care; I did not get a bill.

It was only in the aftermath – when I learned that, unusually in Britain, my husband's job came with private insurance – that I came to realize what it could and could not do. A little over one in ten Britons have some sort of private supplemental insurance; others pick and choose when to use the National Health Service and when to pay out of pocket for the top specialists or speedier care.

Told my husband needed a sophisticated blood test from a particular doctor, I telephoned the office, only to be told there was a four-month wait. "But I'm a private patient," I said. "Then we can see you tomorrow," the secretary said.

We should create a system in the U.S. that covers everyone, and gives everyone a choice or public or private insurance. That would be a huge improvement for many millions, though still far from perfect, like in Britain.

Thanks to Sarah Lyall for the source article in the Sunday New York Times.

I've got the upper hand: The Cure and treatment for cancer

Michelle Grant-Epstein is a 52-year-old mother of three in Framingham, Massachusetts. Advanced colon cancer, diagnosed in 2005, had spread to an ovary, requiring extensive surgery and chemotherapy. Here's her story:

When I was first diagnosed, the doctors said my disease was treatable, but we just don't have a cure now. It was hard to hear.

I'm co-habiting with my cancer, and as long as I've got the upper hand, that’s OK. I'm a fully functional adult [exercising at home, spending time with family and friends, and working part-time at a local library].

Do I wish for a cure? Absolutely! But I know that it's complicated and each cancer is different. For now, I'm grateful for the drugs that are controlling my cancer, and I hope they're still working.

Advice: Live as fully as you can every day.

Read a thoughtful journalist's story about his life after prostate cancer.

Thanks to Michelle, whose story appeared in the Fall/Winter 2008 issue of Dana-Farber’s newsletter, Paths of Progress. This is an excerpt from the article about Michelle and two other cancer survivors who are patients of Dr. Robert Mayer.

I reject that categorization: Life during dialysis

Frank Sietzen, Jr.'s story:
Daniel Asa Rose says dialysis leaves patients "with an enervated excuse for a life." As one of the hundreds of thousands of Americans undergoing hemodialysis, I reject that categorization.

Dialysis isn't easy – there is pain each session when a pair of 15-gauge needles are inserted in my arm and removed three hours later, but if a patient follows the appropriate diet and fluid restrictions, the remaining part of life is no different from anyone else's.

I have energy and a zest for life, swim and exercise every day, and am on the transplant list (which involves a five- to seven-year wait in my region). I am often told how "well" I look.

My life – which I call my 65% life since dialysis and related care consume about a third of my time – is a life well worth living, especially considering the alternative.

Advice: Live a life well worth living, like Frank.

Read a story about a kidney transplant patient's choices after a transplant.

Thanks to the New York Times for printing Frank's letter to the editor on July 17.

Mr. and Mrs. Republican: A lawmaker's response to their hospital acquired infection

Leo and Rita Pepino were married for almost 60 years. "She was my life," Leo says.

Rita died from bone cancer in 2005, after battling two other cancers. She was affectionately known in New Hampshire as "Mrs. Republican" for her political activism. Her husband Leo was the former Speaker of the New Hampshire House of Representatives.

Rita had acquired several painful infections while in the hospital, getting sicker from the place that was supposed to make her well, Leo said.

"Every time she went to the hospital, she always got an infection," he said. He got one, too, years ago from a different hospital when he had back surgery.

Also a Republican, he kept his word after Rita died, helping to marshal through a new law requiring New Hampshire hospitals to report to the state for public release their rates for the three most serious hospital-acquired infections.

New Hampshire Gov. John Lynch signed the bill into law in 2006, "in memory of Rita." However, public reporting has lagged: the state still does not publish the rates of individual hospitals' infections.

A year ago, Leo vowed at age 81 to run again for the seat he lost last time around to make sure consumers get information to compare hospital infection rates. It's for Rita, he said.

Advice to political activists: Be vigilant to ensure your new patient safety laws are implemented faithfully after they become law.

Read another story about Massachusetts'new law on reporting hospital acquired infections.

Thanks to Helen Haskell, and Nancy West for the source article in the New Hampshire Sunday News of August 10, 2008.

From three different insurers: Overlapping insurance coverage

Today we received another health insurance card in the mail for my 19-year-old son, and I realized that he'll have insurance coverage from three different insurers during a two-week period in late August.

This is no one's mistake: each is valid. Between the end of his year-long AmeriCorps service and the start of college is a gap of almost four weeks in July and August. So we got interim coverage through the Massachusetts Connector, with Harvard Pilgrim. His coverage through the college's health service starts in mid-August. And my wife's policy, through her employer, covers our family, including him, resuming in mid-August when he leaves for college.

Screwy, too, is the huge variation in the cost of the policies, of more than three orders of magnitude! There is no additional cost to us of the policy through my wife's employer; it's free. The college’s health service coverage costs $20/month. The Harvard Pilgrim plan costs us $143 a month. In the competitive U.S. market economy, it's hard to imagine any other product whose prices vary by three or more orders of magnitude.

(Incidentally, we had to buy the Harvard Pilgrim coverage for more than twice as long as needed, and pay double, because they require coverage to start at the start of the calendar month and end at month's end. That required us to duplicate my son's coverage in early July and late August. And they're a nonprofit!)

As I write this, I'm in the waiting room of my son's doctor's office, while Neil gets his physical. Annual physical exams are recommended at his age, and his college requires it. I've just had to pay a $25 copayment. Let's see, the purpose of the copayment is to discourage unnecessary use, and make consumers cost-conscious. I'm conscious, all right, though these prices are almost knocking me out!

So while many millions of Americans are uninsured, or under-insured, my son is, because of the system's requirements, briefly triply insured, at our expense. Single payer insurance, anyone?

Advice: Don't try to figure out health care insurance costs; it'll only give you a headache.

He's the guy with the medical degree: Obama's vision of government's role on treatment options

President Obama outlined his vision for the healthcare system in an interview with Andrew Leonhardt, published in the New York Times Magazine:

Consumers have gotten more active in their own treatments in a way that's very useful.  That should continue to be encouraged, to the extent that we can provide consumers with more information about their own well-being.

When it comes to medical care, I know how to ask good questions of my doctor.  But ultimately, he's the guy with the medical degree.  If my doctor tells me, You know what, you’ve got such-and-such and you need to take such-and-such, I don't go around arguing with him or go online to see if I can find a better opinion than his.

And so, in that sense, there's always going to be an asymmetry of information between patient and provider.  And part of what I think government can do effectively is to be an honest broker in assessing and evaluating treatment options.  And certainly that's true when it comes to Medicare and Medicaid, where the taxpayers are footing the bill and we have an obligation to get those costs under control.  

When Peter Orszag and I talk about the importance of using comparative effectiveness studies as a way of reining in costs, that’s not an attempt to micromanage the doctor-patient relationship.  It is an attempt to say to patients, you know what, we've looked at some objective studies out here, people who know about this stuff, concluding that the blue pill, which costs half as much as the red pill, is just as effective, and you might want to go ahead and get the blue one.  And if a provider is pushing the red one on you, then you should at least ask some important questions.  

Thanks to Andrew Leonhardt for the source article in the NY Times Magazine.

She was finally able to visit a specialist: Hip dysplasia treatment through Health Care for All

Barbara was born with a health condition called hip dysplasia, causing severe pain which affects her life in many ways. She works as a secretary at a landscape company and is a 22-year-old single mother. She can't walk well unless she takes a high number of very expensive medications.

She had been uninsured for two years and suffering without the medications that allow her to function normally when she was helped by a counselor at the Helpline of Health Care for All in Massachusetts. A few weeks after she filled out an application over the phone, she started her Commonwealth Care health insurance coverage and was finally able visit a specialist to take care of her health issues.

Barbara has been in treatment ever since. Pain medication is keeping her comfortable until her surgery scheduled for next month. She will have a hip replacement and the chance of success of her surgery is 98%. She is so excited about her new hip and stresses the important role that Health Care For All played in helping her through the whole process. Here is what Barbara has to say:

"We are so lucky to be Massachusetts residents. My daughter is 1 year-old and she was born with the same problem I have. But thanks to all the health care we receive, her health condition was diagnosed as soon as she was born and she had all the care necessary to fix her hips before she started having severe problems. She used a harness for a period of 4 months which helped to cure her problem. And through MassHealth she has the opportunity to go to the doctor for regular checkups. So I couldn't be happier about the health reform in Massachusetts and all the assistance and care I receive every time I call the helpline."

Advice to Massachusetts residents without health insurance: Call the HelpLine at 800- 272-4232.

Read a story of a young mother in another state who lacked insurance.

Thanks to Monika Lira Malhoit for the source blog post at A Healthy Blog.

Parents are often concerned: Dr. Hartman's patient communication

As a father with 19 years of parenting experience, I sometimes have to decide whether to bring my child to the pediatrician. If it will help, of course, I'll bring in my son or daughter, but if not, I'd rather not spend the time. So I call the doctor's office, and either talk to the receptionist or the nurse, and decide with them whether my kid's complaint is worth a doctor's visit. It’s helpful to have guidance from the doctor's office.

Some pediatricians are starting to think more systematically about how to partner with their patients in this decision. Dr. Lester Hartman of Westwood Pediatrics, outside of Boston, has innovated in several ways.

In Dr. Hartman's office, staff routinely collect the email addresses of their young patients' parents of their patients. He sends an e-newsletter to teach them when to come in for a sore throat, what croup looks like, and so forth. "One Saturday while being on call," he says, "the nurse practitioner and I must have seen 30 children with influenza. It is the same old story – the child has a cough and complains of a sore throat and achiness. The parent focuses on the sore throat, worrying about strep or pneumonia. We sent out an e-mail that evening stating to parents: 'We often realize when parents bring their child into the office during flu season, parents are often concerned about pneumonia or strep throat. Interestingly, most children who complain of sore throats say it is a minor symptom compared to their headaches and body aches. If your child says this when you ask then it is unlikely to be strep. Coughs and high fevers are very common in flu season and do not represent pneumonias. Call if your child has the following symptoms….Remember your child can have a fever for 5-7 full days.' The next day we saw two-thirds fewer children with the flu.”

At the end of the newsletter you can state that no emails sent back will be responded to.

Dr. Hartman was able to tell most of the parents – i.e., the vast majority who had email – what to watch for, and how to respond.

Advice to parents: Get a pediatrician like Lester for your kids.

Disclosure: I'm proud to have Lester as a close friend. We've had many backyard discussions on these topics over the years.

Read about a very different kind of communication about children's medical care.

Out of state on vacation: C-section and medical advice

Dr. Linda Burke-Galloway's story:
My patient was a 20-something female in her 34th week of pregnancy who complained of decreased fetal movement for 2 days. I sent her to the hospital to be evaluated with specific diagnostic tests. Six days later, I received her report and it was alarming. I assumed she delivered her baby but called the hospital to verify what had occurred. There was no record of her delivery and she had TWO reports written by the same radiologist that were conflicting. The first report suggested that she should have been delivered immediately, the second suggested that she be kept overnight for observation or at minimum, return to the hospital the next day for a repeat study.

I called the patient assuming she delivered at another hospital but did not receive a response and left a voicemail. She returned my call the next day advising me that she was out of state on vacation. I asked her to please go to the nearest hospital immediately because her baby might be in trouble. She followed my advice and was immediately admitted and had an emergency C-section because there was no fluid around the baby.

Had this patient not be sent home inappropriately, she would not have traveled out of state. Had I not been proactive, there might have been a sad ending. The purpose of my book is to prevent sad stories. Many patients unfortunately fall through the cracks and I'm attempting to reduce that.

Advice to pregnant women: Find a pro-active obstetrician for the sake of your unborn children.

Read another birth story. Thanks to Dr. Linda Burke-Galloway, who wrote Smart Mother's Guide to a Better Pregnancy.

This arcane procedure: Diagnosis in the House of God

Dr. Stephen Bergman's story:
Decades ago when I was a medical student in Boston at one of man’s greatest hospitals, I was assigned a woman with "difficulty breathing." She was 56 years old, a mother of three whose husband had died two years before. In good health all her life, she worked in a flower shop. She had never before had trouble breathing. Her husband's death had been a shock, but with the support of friends and family she had gotten through it pretty well. The resident – my boss – came in and took her history, in a rat-a-tat technique of asking a probing question that had to be answered yes or no, and as soon as there was a response, cutting her off and moving on to the next. I knew he was filling in his grid, a decision tree that would provide the diagnosis. No new information came up. A physical exam showed nothing but her panting. Lab work revealed increased eosinophilia, the blood cell that increases when the body is allergic to something. The resident went back and grilled her on allergies. Nothing.

Her workup proceeded in classic academic fashion, with increasingly refined blood tests and X-rays. The latter showed a diffuse pattern of lung irritation, but no lesions or tumors. Experts were called in, and each diagnosed something in their area of expertise, from the psychiatrist diagnosing "melancholia" at her husband's death, to the surgeons wanting to cut. She kept getting worse, the oxygen levels in her blood falling lower and lower, bluing her lips, paling her face. A look of doom seemed to cloud her eyes. The surgeons did a lung biopsy, which showed only that her lung was reacting to some antigen, as the blood test had shown.

She continued to decline. Palliative treatment was begun. The resident and staff doctors seemed reluctant to enter her room. I felt scared for her and sorry, and spent more and more time sitting with her, just talking – a medical student has time for this arcane procedure. One day I asked her where she lived. She said that after her husband died she'd taken in boarders to survive. I asked about them. "One of them's…a real trip," she gasped. "A magician." I smiled and asked more about him. Part of his act involved trained pigeons, which he kept in cages in the basement. "The cages are right above my washer/dryer." My ears perked up. It turned out that whenever she ran the dryer, the pigeon droppings were aerosolized and she breathed them in – for the past two years. I rushed to the medical library – in those days we still used books – and found "Pigeon Breeder’s Lung Disease." Treatment: get rid of the pigeons; and a course of steroids. Prognosis: excellent. The magician suffered. She got well.

If we rely on technology and tests and neglect "being with" the patient, we may well miss the vital human facts that will solve the mystery and bring the cure.

Read another story about a sensitive doctor's diagnosis.

Thanks to Dr. Bergman, author of The House of God as "Samuel Shem," for the source article in today's Boston Globe.

The doctor woke me up: Patient-physician partnering in gout treatment

Concern about well-known side-effects of certain gout drugs got Robert Jones into trouble. In 2007, the former superintendent for the Brockton Public Schools in Massachusetts developed classic gout symptoms. "I woke up at 3 a.m. with my right toe the size of a sausage," he said. "It was so painful, I couldn't even keep a blanket on." He made an appointment with Dr. Gerald Miley, a rheumatologist at New England Baptist Hospital. The doctor prescribed allupurinol for maintenance and colchicine in case he had an acute attack.

But Robert read about the potential side-effects of both drugs, and didn't fill the prescription. Instead, he decided to watch his diet. In April, he flew to Italy, where he rents an apartment. "I had a terrible gout attack that affected my ankle, knees and feet," he said. "I came home in a wheelchair."

He went back to Dr. Miley's office, and is now on a combination of drugs, including Uloric. He is doing well. "Dr. Miley woke me up," he said. "I don't need to suffer unnecessarily."

In becoming a well-informed patient, Robert had learned about likely side-effects. He made his own decision, possibly without telling his doctor that we wasn't going to take the prescribed drugs. After learning the consequences, he talked again with his doctor, perhaps determining a more acceptable set of drugs and instructions he could live with.

Advice to people concerned about their drug side-effects: Discuss with your doctor how to minimize the side-effects while getting the most benefit from the drugs.

Read a story on patient-physician partnership. Thanks to Laura Duffy for this reprint from the Summer 2009 issue of "Innovations at New England Baptist Hospital," and to Joan Seidel for the photo.

Just dropped by: Reminder cards for doctor visits

That's the reminder card my dentist sent. My veterinarian - err, my dog's veterinarian - send sreminder cards too. Does your doctor send something similar?

Advice: Ask the office manager of your doctor's medical practice to send you reminders of upcoming visits. And if you live anywhere near Dr. Herbert Dorris' office in Cambridge, Massachusetts and need a good dentist, call him.

One job and one accident away: Universal health insurance

Many Americans are one job and one accident away from financial ruin. That's one of the reasons why universal health insurance is so important.

Starla Darling is a young mother who lost her job, and her health insurance, with the closure of the cookie factory she'd worked at for eight years. Pregnant at the time, an emergency C-section left her with an unpayable bill for $17,000.

Several times, Barack Obama’s mother, Ann Dunham, would lose her insurance coverage for her cancer treatment when she switched jobs. Desperately ill, she had to grapple with insurers while she lay in bed to make them pay for her treatment.

David Tallman of Atlanta, who was born with a congenital heart condition and now has a degenerative eye condition, is one of many people who have had to make career choices that are based on the need to maintain medical insurance.

Advice: Vigorously support universal health insurance.

Overmedicated and misunderstood: Appropriate care for the elderly

Candy Schulman's story:

July 2, 2009
To the Editor:
My 96-year-old mother, who died two weeks ago, had difficulty finding physicians trained in geriatric medicine, even though she lived in Florida.

She was overmedicated and misunderstood. Early symptoms – and potential treatments – were missed. A robust woman who drove and played golf until she was 90, she felt infuriated whenever presenting a symptom, only to hear many doctors respond, "What do you expect…at your age?"

Once a year I took her for a checkup with the head of geriatrics at a leading New York teaching hospital, a gifted physician who reduced her medications. But the geriatrics department was eliminated. My mother never found another geriatric physician with the same insight and sensitivity until she was in hospice care. She received better medical care when she was dying than when she was living.

We desperately need to fill this huge gap in medical care between middle-age patients and the elderly at the final stage in their lives.

Advice: There are many electronic databases now that assist in the choice of a doctor. If you have trouble finding them, get the help of a professional patient advocate.

Read a story about drug interactions in the elderly.

Thanks to Candy for her letter, reprinted from the July 8 issue of the New York Times.

Ultimately Congress will decide: Inappropriate mammograms in young women

Ultimately Congress will decide: Inappropriate mammograms in young women

Earlier, I wrote about an inspiring legislator and cancer survivor about U.S. Rep. Debbie Wasserman Schultz. She has now filed legislation, with 350 Congressional co-sponsors, promoting the early detection of breast cancer in young women. Ultimately, she says, Congress will decide.

I admire her determination and passion, and I still consider her a patient advocate heroine.

Yet her efforts are likely to create more suffering than healing. The breast tissue of young women is usually too dense for routine mammograms to be effective. The radiation exposure of mammograms can itself be problematic. Young women rarely get breast cancer. The false positive readings from their mammograms are likely to find too many medically insignificant nodules that would lead doctors to perform unnecessary biopsies, in which tissue is removed for testing. Scarring from the biopsies could make breast cancer harder to detect when the women are older and have a much higher risk of breast cancer. False alarms can lead women to distrust their doctors and skip mammograms later in life when the tests have been shown to reduce the death toll, according to Dr. Otis Brawley, the chief medical officer of the American Cancer Society. Similarly, breast self-exams can lead young women to detect small irregularities of no medical significance. While breast self-exams and mammograms of women in their 40s and older do indeed save lives, self-exams and mammograms of women in their 20s and 30s have not proven to result their death toll, according to Dr. Susan Love, a prominent breast cancer surgeon.

Perhaps in the future, mammography will improve to more accurately detect cancers in young women’s dense breast tissue. Until then, advocates have to look hard at the facts, and have to think carefully about what advice will truly minimize the suffering of young women.


Advice to mothers of young women: Read the excellent New York Times article by Natasha Singer on July 17 about public health experts' criticism of early mammograms, before advising your daughters.

Read a story about anxiety from false positive mammograms.

Take heart: Compassionate care at the end of life

Jay's story:
Nine years ago, my wife lost her battle with cancer. She also endured harsh, unfeeling treatment at work. The week we learned that additional treatment would not prolong her life, she came home in tears due to a nasty comment from a co-worker.

The next day, I accompanied my wife to her office and asked the supervisor for permission to address those co-workers. The supervisor was clueless about what had been going on. I said, "My name is Jay and I’m Jena's husband. I love her with all my heart, but we found out this week she is dying and there is nothing more that can be done.” The silence was deafening. I took my wife's hand, told her I loved her and said if she didn't want to work there anymore, she could come home so I could take care of her. With tears in her eyes, she replied, "Let's go."

By the time we arrived home, our answering machine was full of kind messages from her co-workers. The supervisor came by a week later to see how she was doing and informed us that three employees had been fired for "creating a hostile work environment."

My wife died in my arms six weeks later. She had forgiven them and so have I. To all the survivors out there, take heart. Every day that goes by will give you a little more strength to get through.

Advice to cancer patients facing tough choices: Follow love.

Read another story of another tough choice at the end of life. Jay's letter to Annie's Mailbox appeared in today's Boston Globe.

The highlight of my 28-year career: Early detection of oral cancer

Nancy is a registered dental hygienist. Here’s her story:
This 70-year-old woman has been a patient of mine for many years. Because of her periodontal disease history she comes in every 3 months for cleanings. She has been a smoker since she was 14 years old. She has smoking-related health problems - emphysema and pulmonary fibrosis. Her smoking has also taken a real toll on her oral health. Moderate bone loss, loss of teeth and a failed implant bridge.

During one of her cleanings I noticed a small red area on the floor of her mouth. Just an irritation? Maybe. But I couldn't ignore it. We sent her to the oral surgeon. The phone call was shocking! It was a squamous cell carcinoma. We caught it at a very early stage and they were able to remove it. No other treatment was needed. The oral surgeon's final words: "Congratulations, you saved her life." WOW! That for sure was the highlight of my 28 year career.

Cancer exams save lives! and PLEASE QUIT SMOKING!!!!!!! A final note: After 50 years of smoking this patient kicked the habit! Way to go!

Advice to people who haven't seen a dentist lately: It's uncomfortable but rarely painful. Call around first to see what they do to make it more comfortable for patients; then go.

Read another story on how timely dental care could have saved a life. Thanks to Dr. William L. Eickhoff of North Palm Beach, Florida for the post on his blog on July 9.

An incentive to noble living: The anniversary of Grandpa Leo's fatal surgical error

Leo Juran, my father-in-law, went into the hospital for a minor, routine hernia repair seven years ago, and died a few days later of a rare complication. According to the Jewish lunar calendar, today is the seventh anniversary of his death.

Leo seemed to be most in his element when playing with his young grandchildren, who achingly miss him.

Eternal God, as I kindle the Yahrzeit lamp on the anniversary of the death of my loved one, the memory of his life passes before me. I fondly recall the years we shared together. Time cannot efface the measure of his devotion. I shall ever be grateful for the sacrifices he made in my behalf.

Dear God, may the memories which this Yahrzeit candle evokes be an incentive to noble living. Please keep my dear ones who loved him united in affection and harmony. I pray that I may so live that when at last, I too, am summoned to you, I shall be worthy to be united with my dear one in the bond of eternal life. Amen.

Advice: Leo was a tough customer who would go to the top when he had a complaint. Insist on fair and respectful customer service, firmly and politely, as he did.

Too little and too much: Inappropriate treatment

On Tuesday, I had the great pleasure of participating in the kickoff of a group of 60 health care leaders who are coming together in the Aligning Forces for Quality (AF4Q) project in Eastern Massachusetts. The group is setting a bold goal to provide healthcare more appropriately. Barbra Rabson and Prof. Stuart Altman are the primary investigators on the planning grant awarded by the Robert Wood Johnson Foundation.

There are two kinds of inappropriate care: too little, and too much. In my own family we've had both, with great harm to my aunt and uncle. My Aunt Anne lived for many years in Denver, by herself, and enjoyed traveling widely and taking part actively in the city's cultural events. I never heard her complain about poor health, and we assumed she was fine. I only learned, after her death, that she had had adult onset diabetes. She herself had learned that only late in life, when she had a blood test before having cataract surgery. She hadn't trusted doctors, and had seen them too rarely. One day she complained to a close nurse friend of pain in her foot, and showed her the foot. Already black and gangrenous from the poor circulation caused by diabetes, much of it had to be amputated – which greatly reduced her mobility and crushed her spirit. Within a year or so, she had a fatal heart attack. When we cleaned out her possessions in her apartment, we found many pill bottles, each almost full. She would comply with a new prescription only for a couple of days, and if the medicine didn't work immediately, she apparently would stop taking it.

She got too little treatment, and too little education, for her diabetes. She didn't partner with her doctors, or any other health professionals, costing this vibrant woman years of life.

My Uncle Leon lived in the Washington DC area for most of his adult life. He trusted his doctor fully – to the extent of having him perform multiple angioplasties. Even so, he had several heart attacks. It's hard to believe that all of the angioplasties were appropriate. It seems he had too much inappropriate surgery, and too little effective education about self-care and prevention.

Neither Anne nor Leon received appropriate care. The partnerships they had with their medical teams were ineffective at keeping them healthy. The AF4Q brings together clinicians in hospitals with insurers, government agencies, and consumers. Hopefully this collaboration will strengthen the partnerships between doctors and patients, to make treatment more appropriate.

Read a story on unnecessary surgery.

Unable to find an internist who took Medicare: Concierge medicine

Harold and Margret Thomas, who are in their mid-70s and live in Cincinnati, spend the winter in Tucson. After many phone calls, the couple was unable to find an internist in Tucson who took new Medicare patients, so they signed with Dr. Steven Knope in 1996. Five years ago, when Margaret developed a blinding headache, her husband called the doctor at 8 pm one night, and he, suspecting an aneurysm, insisted they get to the Emergency Room immediately.

The doctor met them and ordered an MRI and CT scan. The test revealed an aneurysm, and Dr. Knope found a surgeon who quickly operated. Medicare paid for the emergency room, the surgery and the hospital stay.

"If there were a concierge practice in Cincinnati, I'd be part of it there, too," Harold said.

Concierge, or "boutique" care, comes in two forms. In the more popular form, doctors accept Medicare and other insurance, but charge patients an annual retainer of $1,600 to $1,800 to get in the door and received services not covered by Medicare, like annual physicals. Before signing up and paying the retainer, patients should get a written agreement spelling out which services the doctor will bill Medicare for and which the retainer covers.

The other form of concierge medicine is more expensive. Fees range as high as $15,000 yearly and cover office visits, access to the doctor when care is needed, referrals to specialist, and thorough annual physical exams.

Advice to wealthy seniors whose doctors don't accept Medicare: Consider a concierge practice.

Read a story about a medical home.

Thanks to Julie Connelly for the source article in the New York Times of April 2.

You have to ask patients: Testimony of the Consumer Health Quality Council

This was the testimony I delivered before the Joint Committee on Public Health of the Massachusetts State Legislature on June 23:

Thank you for the opportunity to provide testimony on House Bill 2084 and Senate Bill 909, An Act to Reduce Medication Errors in the Commonwealth.

I'm Ken Farbstein, the President of Health Care for All's Consumer Health Quality Council. Nineteen years ago, my wife was about to give birth to my son, in one of the Harvard teaching hospitals. Way up in the same building, we heard that doctors were treating one of the princesses of Saudi Arabia, who was there because the hospital had such a great worldwide reputation. But our team of doctors made a really basic misdiagnosis. My wife got the wrong drug for 12 hours, and she didn't get any pain medication for the first 12 hours she was in labor. We never formally reported either one of these two medication errors – our son was in the NICU for three weeks, so we couldn't think about anything else. I'm bringing up this story now to make a simple point: The vast majority of medication errors are never formally reported within the hospital. To find out about them, you have to ask patients.

Other Consumer Council members have also experienced medication errors that were never reported as such. One member was given a medication by a neurosurgeon that brought on a seizure, even through she told the doctor that she had experienced seizures in the past and knew this medicine was related to their occurrence. Another Council member was never given pain medicine following a surgical procedure, even though she requested it and her doctor had approved its use. A third Council member contracted an intestinal infection as a result of being given multiple antibiotics while hospitalized. To learn about many medication errors, you have to ask patients, and the expert panel required in this bill can do that.

Back in 1999, there was tremendous shock when we learned from an IOM study that 98,000 people were found to be dying of medical errors every year (14,000 of them from medication errors). Then seven years later, we were shocked, again, to learn from the IOM that 1.5 million people a year suffer injuries from preventable drug errors.

We need to fix this. We need an independent panel of experts – which this bill requires - to review what has been learned, what works, and to make formal recommendations within a year, and then embed them in law and ensure that there are sufficient reporting and oversight mechanisms to stop the harm to people and the waste of money.

Thanks for your consideration.

Advice: Together with your supporters, tell your legislators what you care about.

Read our testimony on another bill, or see the short video of the testimony of Health Care for All President Amy Whitcomb Slemmer, and Council members Ginny Harvey, Lucilia Prates, and me.

Thanks to Deb Wachenheim for her legwork in organizing our panel for the hearings.

The fine print excluded nearly all the treatments: Aetna’s limited benefit insurance policy & bankruptcies

Lawrence Yurdin is a 64-year old computer security specialist. He had insurance through Aetna – a "limited benefit" plan, which, in hindsight, was not worth the paper it was printed on. Or, more precisely, as Aetna spokesperson Cynthia Michener said, "Limited benefits aren't right for everyone, and it clearly wasn't right for Mr. Yurdin." Aetna further acknowledged that his age and condition – an irregular heartbeat – made it likely that he would require more comprehensive coverage.

Lawrence learned this the hard way when he went to the hospital for two separate heart procedures last year, and two more procedures later.

While the Aetna brochure indicated he had purchased $150,000 of hospital care, the fine print excluded nearly all the treatments he received in the hospital, according to today's front-page story by Reed Abelson in the New York Times. With his unpaid medical bills approaching $200,000, he had to file for bankruptcy around Christmas time.

His case is common: three-fourths of the people who file for bankruptcy because of medical bills actually had insurance. As Harvard Law School Professor Elizabeth Warren says, "People do not realize that they are one diagnosis away from financial collapse."

A highly instructive expose by recent insurance executive Wendell Potter about these and other sneaky tactics used by large insurers appears in his testimony at U.S. Senate hearings last week.

Advice to people with a limited benefit health insurance policy: Read the fine print carefully. Maybe you should dump your insurance company before they dump you.

Advice to government legislators and regulators: Suntan lotion bottles must show their Sun Protection Factor prominently. Consumers know that a high SPF will protect them much better than lotion with a low SPF. A simple number that rates the Bankruptcy Protection Factor (BPF) of limited benefit insurance policies will keep consumers from getting badly burned by shoddy insurance products. Or maybe "B" will stand for something else…

Read about another cruel insurance practice.