Too busy to take in what I have to tell her: Physicians' work-flow with an electronic medical record

Joyce Adams' wry observations:
A doctor I see is one of the 4% of doctors who make full use of electronic records to assist their practices. It seems obvious to me that having lab results, previous clinical observations and recommendations at her fingertips enhances the care she provides.

On the other hand, visits to this doctor involve minutes spent while she locates my health records on the computer, and minutes spent as she enters new data, all the while with her gaze and attention fixed on the computer rather than on me. The tap-tap of her fingers indicates that she is too busy to be taking in whatever I have to tell her, and that the electronic task has been elevated over the old-fashioned hands-on approach to clinical care.

Once records are enshrined in my doctor's computer, they are available for her use and the use of other doctors in her clinic. However, they fail to travel beyond the clinic to the office of my primary care doctor because apparently the task of faxing them over is too onerous in this high-tech age.

Getting electronic records to my primary care doctor, who oversees all aspects of my health, requires a more basic effort: a hand-carry by the patient.

So much, and so little, progress!

Advice: Choose a physician who has both an electronic medical record and high patient satisfaction ratings.

Read another story on the work-flow of physicians with an electronic medical record.

Thanks to Joyce Adams for her letter to the editor, published in today's NY Times.

Stronger than I've ever been: A heart transplant athlete

The heart transplant survivor Kelly Perkins has added another first to her long string of mountaineering feats since getting a new heart 13 years ago – a dangerous climb up a sheer, 2,000-foot face of Half Dome in Yosemite National Park.

Kelly, age 46, and her husband, led by guide Scott Stowe, began the climb on Thursday and reached the top of the 8,842 foot high dome early on Saturday afternoon.

"I feel great," she said by phone from the top of Half Dome. "Physically, I feel I'm stronger than I've ever been."

Advice to transplant patients: Live your life as fully as Kelly.

Read another superstar athlete’s story.

Thanks to the NY Times for publishing the source article today.

The furthest you could be from courageous: Attitudes toward one's own cancer

Although public figures like Teddy Kennedy promote enduring impressions of the stalwart, pumped-up spirit, Dr. Joseph Finns says patients themselves often describe a more nuanced, evolving journey.

When Robert Kosinski was told he had a tumor on top of his brain stem, entwined with his optic nerve, "Everything went dark, went blank," he recalled. "I was overwhelmed by the idea that I had a brain tumor stuck inside me. The train ride home lasted so long and I just kept wondering, 'How long do I have to live?'"

Faced with potentially harrowing repercussions from a biopsy, Robert, a husband and father in Jersey City, said he felt depressed and ultimately alone with his decisions.

He chose not to have the biopsy, and went through chemotherapy. He would endure a dozen blood transfusions. Optimism, or even stoicism, were not part of his emotional makeup during those grueling months. "I never felt brave or courageous," he said. "I don't know what that means. I was scared. I was the furthest you could be from courageous."

That was 15 years ago. Now 61, he paints and attends a monthly support group, where he ascribes his odds-defying survival to luck and medical expertise, rather than personal will. "Some people in my group don't want to hear the upbeat scenario," he said. "The way they're coping is completely the opposite because they feel they may not make it."

Dr. Finns' advice to patients: There's no scripted way to handle this. Write your own script based on your own narrative.

Read a story about Teddy Kennedy’s brain cancer.

Thanks to Jan Hoffman for her source article in the June 1 issue of the NY Times.

I'll do anything to save money: Patient testimonials for face-lifts

For Dave Gibson, 53, a New York actor, who had his Lasek surgery in May, posting a video on Facebook and YouTube was a no-brainer. He even added his own blow-by-blow narration. ("The first thing the doctor does is place a round apparatus in the center of my eye…") At the doctor's request, he also sent an email message to 100 of his closest friends, racking up a $1 credit for each one. As soon as the doctor had mentioned the rebate, Dave thought to himself, "I'll do anything to save money."

Another patient asked to remain anonymous because he is still undergoing treatment for an operation he had done about six months ago. Never mind that the video went up almost immediately, before he had time to heal. "Regardless of whether I'm happy – that's not going to stop me from posting," he said. "It's money in my pocket." As it turns out, he isn't satisfied with his results, but he hasn't taken down his glowing endorsement.

Advice: Take patients' testimonials with a grain of salt.

Read another plastic surgery story.

Thanks to Abby Ellin for the source article in the NY Times of June 26.

I got my mother back: Overuse of antipsychotic drugs in nursing homes

Last fall, Theresa Lamascola of the Bronx, suffering from anxiety and confusion, was put on the antipsychotic drug Risperdal. When she had trouble walking, her daughter took her to another doctor, who found that she had unrecognized hypothyroidism, a disorder that can contribute to dementia.

She was moved to a nursing home to get the problems under control. But things only got worse. She "was screaming and out of it, drooling on herself and twitching," said her daughter, a nurse. The psychiatrist in the nursing home stopped the Risperdal, which can cause twitching and vocal tics, and prescribed a sedative and two other antipsychotics.

"I knew the drugs were doing this to her," said her daughter. "I told him to stop the medications and stay away from Mom."

Not until another doctor took her off the drugs did she begin to improve. He prescribed Aricept. "It's not clear whether it was getting her hypothyroid and other medical issues finally under control or getting rid of the offending medications. But she had a miraculous turnaround," said the new doctor.

She still has dementia but she went from confinement in a wheelchair – unable to sit still and screaming out in fear – to being able to walk with help, sit peacefully, have some memory and ability to communicate, understand subtleties of conversation and even make jokes.

Or, as her daughter put it, "I got my mother back."

Researchers estimate that one third of all nursing home patients have been given antipsychotic drugs.

Advice to people with elderly relatives in a nursing home: Ask the doctor about alternatives to antipsychotic medicines.

Read another story about drug side-effects in the elderly.

Thanks to Laurie Tarkan for the source article in today's NY Times.

Blind-sided by my reaction: The role of attitude in surviving cancer

Richard Haimowitz, 62, a lawyer in Queens, New York who was found to have pancreatic cancer in January 2007, thought of himself as a warrior, fighting with all available ammunition.

"The day of my last treatment, people congratulated me, but I felt blind-sided by my reaction," he said. "I thought, 'Oh my God, I have nothing left to fight with,' and I felt angry that there was nothing left for me to do." Statistics to the contrary, he has had two clean scans, is back at work and takes spinning classes. As he soldiered through treatment, he did not fear death, even though he did not want to die.

Many studies published in oncology and mental health journals have looked at whether attitude is a factor in survival or recurrence rates, a core belief in many cultures and faiths. Some studies say Yes; others say No. They all have their critics.

Advice to friends and families of cancer patients: Try to empathize with them regardless of their mix of feelings.

Read another story about the role of attitude in recovering from cancer.

Thanks to Jan Hoffman for the source article in the June 1 issue of the NY Times.

He has resumed athletic activities: Attitudes toward one's own cancer

Brian Wickman, a manager at a luxury hotel in Manhattan, needed to refrain his loved ones' language. Two years ago, an oncologist told him there was little published data about the aggressive tumor on his ankle because it was so rare and because "no one wants to publish when all the subjects die." A month later, Brian, then 30, a skier and a rock climber, had his left leg amputated. He was also found to have thyroid cancer. He reacted severely to chemotherapy, and spent two months in intensive care.

His awestruck friends would say, "You're so brave, I don't know how you do it; you're my inspiration." "They would put me on a pedestal," Brian said. "That doesn't allow me to be human an in pain, angry or depressed."

His email messages reveal a spirit of great equanimity and eloquence. He now wears a prosthesis and has resumed athletic activities, and will attend graduate school in the fall for a joint degree in social work and divinity.

But in his darker moments, he refused to construct a front. He would write bluntly about feeling grumpy, frustrated and afraid nobody would date him. "This is not a call for pity responses," he would add. "Just let me be where I am."

Advice to friends and families of cancer patients: Try to just let them be where they are.

Read another story about the role of hope.

Thanks to Jan Hoffman for the source article in the NY Times of June 1.

Coming from several blocks away to gawk: Privacy and neighbors

Dear Amy,
I have a sensitive issue and nosy neighbors. Three weeks ago, I was taken to the hospital because I suffered from major depression and was suicidal. I was in the hospital for eight days.

One week to the day of my release, I had four police cars, eight officers and two paramedics at my home to take me back to the hospital. Literally, every one of my neighbors was outside wondering what was happening, and they saw me being carried away on a stretcher. I was gone for three days and was diagnosed with bipolar disorder.

That weekend I had the police at my house four times because of my son running away, becoming violent and threatening suicide. The last incident ended with five police cars, 10 officers and the obligatory ambulance and paramedics. They blocked the roadway in both directions. Everyone was outside and watching, some coming from several blocks away to gawk.

What do I say to these people? Do I tell them I was suicidal, depressed and now diagnosed as bipolar? Do I tell them my son has a drug and alcohol problem along with also being bipolar?

Or do I just ask them why they're so interested in something so personal?

I need a subtle way to tell them that it's none of their business without revealing the true reasons. Any suggestions?

Amy's Advice to Wondering:
First of all, I hope your situation has stabilized. I can imagine that you feel very exposed because of the public drama brought on by these crises.

You don't have to reveal anything to your neighbors, but if you choose to, you can say, "I realize that things have been very dramatic at our house lately I've had some health issues that brought on a crisis for me and my son, but we're hoping things are better now."

Browse for related stories in the index at the very bottom of this page, or read another privacy story.

Thanks to Amy Dickinson for the source letter in her column, published in the June 16 issue of the Philadelphia Inquirer.

The physician ordered the methotrexate as listed: A wrong dose near-miss

An 85-year-old man who'd been getting treatment for severe psoriasis was admitted to the hospital with a three-week history of confusion, forgetfulness, and weakness. Home medications listed on his medication reconcilation sheet included oral methotrexate, 25 milligrams every Saturday at breakfast and lunchtime. The hospital used patients' medication reconciliation sheets as order sheets, and a physician ordered the methotrexate as listed.

A typical dose of methotrexate for psoriasis is 2.5 milligrams at 12-hour intervals for three doses once a week. Doses may be gradually adjusted but generally should not exceed 30 milligrams/week. The pharmacist recognized that a 50 milligram weekly dose was high, so he asked the nurse to confirm it. The patient verified that he was taking 25 milligram doses.

Before dispensing any methotrexate, a second pharmacist questioned the order. The pharmacist called the patient's family and asked them to read the prescription container. It indicated that each dose was supposed to be 2.5 milligrams. The order was changed because of the pharmacy intercept, and the patient received the correct dose.

Advice: Bring your medication containers and a list of your medications when you go to the hospital.

Read another near-miss of a drug error story.

Thanks to Michael Cohen for the source story in the June issue of Nursing2008.

A buffer and enabler for the patient: VIP care

Dr. Victoria McEvoy on VIP care:
One Emergency Room doctor told me recently about a VIP patient who came to the ER complaining of chest pain. The patient's visit triggered a cascade of events at the hospital administration level. The "VIP Office" sent a delegate to smooth the way, and the patient came with his own personal physician, who was there to serve as a buffer and enabler for the patient. Not only was the "physician bodyguard" not in the right specialty for the complaint and age of the patient, but the physician gave orders: "Call the cardiologist and get an echocardiogram."

Both the resident and the responsible physician thought the patient's problem was gastro-intestinal: he had swallowed a huge antibiotic pill without water, and the esophagus was irritated enough to cause the chest pain. Instead of quickly looking at the patient's esophagus, hours were wasted getting cardiology and cardiac tests which were not needed. His VIP status delayed him getting proper care.

Advice to Very Important Persons: If you bring in your personal physician, make sure they will listen to other doctors' opinions.

Read a celebrity drug error story.

Thanks to Dr. Victoria McEvoy for the source article in yesterday's Boston Globe.

National Marrow Donor Registry

The Dana-Farber Cancer Institute is encouraging everyone to join the National Marrow Donor Registry today from 10 am – 3 p at Tufts University's Cousens Gymnasium in Medford, Massachusetts. Former Red Sox pitcher Bill Monbouquette, recently diagnosed with leukemia, is among thousands of people who are awaiting a transplant.

Advice: Look for a time and place to register with the National Marrow Donor Registry. You might save someone's life.

Read a donor story.

Thanks to the Boston Globe for the source article in today's newspaper.

A pictogram in return for another pictogram: Diabetes patient education

Consultations with Mrs. L are difficult: sometimes, she comes
without her diabetes logbook, or forgets to have the requested
HbA1c assay. Above all, she comes either alone or accompanied
by someone who, like herself, speaks nothing but Chinese. All I
can do, in order to understand her repeatedly high HbA1c
levels, is to look at her logbook and try to understand the
documented insulin doses and the blood glucose concentrations.

Recently, I admitted her to hospital. Firstly, we verified that
the technical aspects of blood glucose determination and
insulin injection were perfectly correct. I also told her that
I needed an interpreter. A Chinese neighbour who was fluent in
French came with Mrs. L on the following day. I first checked
with Mrs. L the basics of adapting insulin doses and began to
ask her questions through the interpreter. No answer. I
therefore asked the interpreter if he, himself, had understood
the meaning of the questions. He was positive. I then asked Mrs.
L to tell me what she thought of insulin. No answer. I realised
that she knew nothing about it and that the treatment made
absolutely no sense for her.

This situation reminded me of John Searle’s "Chinese room"
argument. Imagine a Westerner, speaking English but not
Chinese, in a room with a window. Through the window, a Chinese
person shows Chinese pictograms. The Westerner has a manual,
written in English, instructing him how to show a pictogram
specific for the pictogram he sees through the window. He is
not aware that the pictogram he sees is a question, and that
what he then shows is the correct answer. The Chinese person
outside cannot work out that the Westerner does not understand
Chinese.

In the case of Mrs. L, we doctors were the Chinese. We had no
direct way of recognising that the blood glucose determinations
or the insulin injections that she performed impeccably had no
meaning for her.

I decided to start her education from scratch. What is
diabetes? What is a normal glucose concentration,
hypoglycaemia, hyperglycaemia, etc? Repeatedly, I asked the
interpreter whether he understood and whether he thought that
Mrs. L understood. He was affirmative. I arrived at a problem—
how to verify that the dose of insulin was correct. At this
point, I was unsure whether the interpreter understood the
question, and I decided to stop the session, giving him another
appointment for the next day. In fact, I doubted the
interpreter’s comprehension of the real sense of what I had
said. It seemed to me that the Chinese room was now separated
from me by two walls and windows.

The next day, a different person accompanied Mrs. L to the
appointment—her nephew, also perfectly fluent in French.
Needing to go through my explanations all over again, I decided
to use another strategy and asked the nephew to imagine that he
was diabetic, and that he had to listen to my explanations as
if they concerned him, in order to give a meaning to the
therapeutic education. Only then would he translate the
information to his aunt. I had the sensation of trying to enter
the Chinese room by climbing through the first window.

To a lesser degree, this story may be relevant to many
consultations, even when there is no obvious language barrier.
It is vital that the patient understands the message as a whole
and not just the words, or else the treatment routines may be
analogous to nothing more than showing a pictogram in response
to another pictogram.

Advice for speakers of a foreign language: Get a good interpreter.

Thanks to Dr. Gerard Reach for the source article in the Feb. 16 issue of the British Medical Journal.

Including her favorite meals and TV shows: Web-based caregiver communities

When Stephen Dworkin's father was diagnosed with pancreatic cancer in 2005, he and his two siblings began to share in his care. But Stephen was in Newton, his parent lived in Florida, and his brother and sister lived in Connecticut. "My dad passed away relatively quickly. And then we were completely unprepared to care for my mother," Stephen said.

At the time, Stephen's business partner, Jonathan Quint, saw the challenges his wife was having in caring for her mother, and the two knew they'd hit on a much-needed service: helping baby boomers care for aging parents.

They came up with Caregiver Helper, a secure online community resource that houses information about medications being taken, emergency contacts, doctors' appointments, and even the patient's favorite activities.

"Anytime a new caregiver came to my mother's house, all the information was available, including her favorite meals and television shows. And each time there was a new doctor, all of her medications could be printed out."

One in four American families are juggling similar caregiving responsibilities, according to the National Alliance for Caregiving.

Advice to Baby Boomers caring for parents who live far away: Consider a resource like this one.

Thanks to Susan Chaityn Lebovits for the source article in the Feb. 25 issue of the Boston Globe.