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Thursday, July 30, 2009

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.

Wednesday, July 29, 2009

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.

Monday, July 27, 2009

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.

Saturday, July 25, 2009

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.

Friday, July 24, 2009

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.

Thursday, July 23, 2009

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.

Wednesday, July 22, 2009

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.

Tuesday, July 21, 2009

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.

Wednesday, July 15, 2009

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.

Monday, July 13, 2009

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.

Saturday, July 11, 2009

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.

Thursday, July 9, 2009

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.

Saturday, July 4, 2009

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.

Thursday, July 2, 2009

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.

Wednesday, July 1, 2009

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.