Only in America: Pre-existing conditions and their consequences

The grotesque reality of my life has been constant constraint by the need for health insurance. With a congenital heart condition and a degenerative eye condition, I married my wife while in graduate school because I was no longer eligible for my parents' group pan, and at the time few graduate programs offered group health.

My career choices were dictated by the knowledge that I needed group health: the tenuous life of an academic in a tough job market seemed too risky, so I switched to law school.

I avoided private-sector legal jobs upon discovering that many firms do not provide group insurance but expect individual lawyers to find individual health plans, so I ended up working for the state.

Fortunately, things have worked out for me so far. It was not desperate need, such as you described [in "Health Benefits Inspire a Rush to the Altar, or Divorce Court"] but a sense of obligation and responsibility that drove me to make major life decisions based on health insurance needs (I do not have family who could foot the bill for open-heart surgery).

But only in America are people with pre-existing medical conditions forced to plan every aspect of their lives around the need for group health insurance. I have often toyed with the thought of emigrating to Canada or Britain simply to escape the constant, gnawing, lifelong fear of what might happen should my group health for any reason ever lapse.

-David Tallman, Atlanta

Advice: Insurance may be available through trade and professional associations.

Read a story about a person who has become uninsurable.

Thanks to David for his source letter to the editor of the New York Times, published on August 18.

The patient makes barking noises when excited: Google's Personal Health Record

I did a sneaky test of Google's new personal health record, since I was wondering whether they would keep my personal health record confidential.

I filled out a completely truthful profile for a member of our family: a 6-year-old male weighing 35 pounds, who has a whistling heart murmur but is otherwise in excellent health, as he runs daily. The patient is excitable, and makes barking noises when excited or agitated – as dogs often do.

I haven't received any spam or junk mail in his name since entering his profile two months ago. This may mean Google is serious about keeping medical information private…at least for now.

Advice: Consider using a personal health record to track your family's treatments, immunizations, and upcoming appointments.

We're the dancers of this life: Yena Marcovicci

Every ball gives you a new opportunity.
Your opponent on the other side of the court is your partner.
There is no failure.
The journey is staying in the moment, not in the score.


Yena Marcovicci died suddenly in the prime of his exuberant life at 62, in October, of a heart ailment. He had kept private the knowledge of the ailment.

He had been a long-time life coach and teacher of The Dance of Tennis at Omega Camp in Rhinebeck, New York.

We're the dancers of this life,
The healers of our world
Of the journey that whirls within
Challenging all that made this life.

Advice: Live as fully and uniquely as Yena, "free to love and free to share the true nature of our soul."

Thanks to Skye Marcovicci for the source poem by Yena Marcovicci, "Gypsy Warrior."

$180,000 of medical services and prescription drugs: Medical identity theft

In May, a woman in Edmonds, Washington was arrested for using another woman's identity to obtain nearly $180,000 worth of medical services and prescription drugs. Authorities say Barbara Reuter took her victim's personal information – including her date of birth, Social Security number and other information – and convinced doctors she was a real Medicaid client. She was caught when the health plan's billing department noticed duplicate billings for virtually simultaneous medical visits.

Medical identity theft can be just as time-consuming and frustrating to resolve as are the more common forms of identity theft that involve stolen credit cards or forged checks.

Advice: Shred your explanations of benefit forms before recycling them.

Thanks to Phuong Cat Le for the source story in the Seattle Post Intelligencer.

Enough information was not provided: Emergency response through VoIP

Using the Internet instead of a traditional phone to call 911 could complicate emergency response to your home, Canadian officials are warning.

The warning comes after the death of an Alberta boy that has been linked to a mix-up caused by use of an Internet telephone.

Voice over Internet Protocol or VoIP, which allows you to make phone calls through a broadband Internet connection, has been available in the Greater Toronto Area for about four years. VoIP service is available throughout York Region. One of its selling points is it can be less expensive to make long distance telephone calls than using a traditional phone service provider.

The reliability of making emergency calls with the Internet service became the subject of debate earlier this week after an 18-month-old boy died. Paramedics were dispatched to a Mississauga address after a VoIP 911 call instead of being sent to the Calgary address where the child was because enough information was not provided during the call and the Ontario address was on file for the customer.

A complication arises when VoIP providers do not have the technology to allow their subscribers to call 911, according to York Regional Police spokesperson Constable Marina Orlovski.

If you have a VoIP phone and move it to another location, such as across town to a relative’s home and call 911 from there, the information sent to an emergency call taker will appear as your home address — not where you are.

"We have the capability to receive the calls. It's up to the VoIP provider to make sure their clients, first of all, have the technology and second, that their subscribers know about (911 service) and they have a system for them to sign up," Const. Orlovski said.

The traditional 911 system, based on land line use, routes an emergency call to the correct 911 center, according to Markham Fire's public education officer, Dave Blizzard. Enhanced 911 service provides the emergency call-taker your name, address and phone number.

Markham Fire also warns that access to 911 service for VoIP customers may not be available during a power failure or if the Internet connection is down.

"A phone call from your home or a neighbour's home is still so important," Mr. Blizzard said.

A Canadian Radio-television and Telecommunications Commission (CRTC) ruling on Oct. 20, 2005, required all local VoIP providers in Canada to provide notice to current and prospective customers about the availability and limitations of their 911 and enhanced 911 service. The CRTC also ruled local VoIP providers would have to communicate their 911 service limitations to existing customers at least once every year.

Advice to VoIP customers: Find out if 911 service will work through your VoIP provider.

Read another story on getting prompt emergency response.

Thanks for Joe Fantauzzi of YorkTimes.com for the source article.

After three surgeries: Health advocates

After three surgeries, 63-year-old Judy Sherer of Norcross, Georgia still had chronic pain in her left shoulder. She'd lost faith in her doctors, and in despair, tried a new health benefit offered by her employer.

The service, Health Advocate, is a call-in center that helps customers find the right doctor, haggle over insurance coverage and manage other medical systems headaches.

An advocate helped Judy find a new surgeon, one who found metal shavings left in her shoulder in error by a previous doctor. The advocate also negotiated the charge for her physical therapy down to $40 per visit from the $200 charge she was told of initially.

"It saved me a ton of money," she said. “I’m very, very pleased.”

The largest customers of health advocacy services are companies, not individuals. "The employers are interested because it means their employees are not on the phone taking care of doctor's visits during work hours, says Carol Fischer, a spokeswoman for Pennsylvania-based health Advocate.

Advice to frustrated consumers: Consider using a health advocate.

Read another patient advocate story.

Thanks to Mike Stobbe for the source article in the July 27 issue of the Atlanta Journal-Constitution.

Why there's a market for these drugs: Obsessive-compulsive disorder

From James Vlahos' article about the pet owners' use of mood-altering drugs for their pets:

At the end of the day, Dr. Nicholas Dodman, leaning back in his chair, launched into a story about a human obsessive-compulsive-disorder sufferer he had met – a man who repeatedly tugged at his beard. Dr. Dodman asked him if he had ever stopped, and the man said he did during a hitchhiking trip across Canada. Dodman thought he knew why: "He went back to being a human being. He was watching out for real dangers. He was trying to go real places. He was concerned about his next meal. He was thinking about where he was going to sleep. And he wasn't concerned about the stupid beard-pulling, because now he had a real life. When did the problem start again? The minute he sat back in front of a flickering computer screen."

His theory, essentially, is that the causes of mood disorders and obsessions in humans and our pets aren't so different – faulty genetics, dreary environments. Whether cubicle- or cage-bound, we get too little exercise; we don't hunt, run or play enough to produce naturally mood-elevating neurochemicals. Strangely enough, I had already heard this theory – from a pharmaceutical company executive who, for obvious business reasons, didn't want to be named. "All of the behavioral issues that we have created in ourselves, we are now creating in our pets because they live in the same unhealthy environments that we do. That’s why there's a market for these drugs."

Advice: Being in natural surroundings can help people heal.

Thanks to James Vlahos for the source article in the New York Times Magazine of July 13.

You and your little furkid will benefit: Dog therapy visits

We had our very first therapy visit on Tuesday and I can't give an adequate description of how life-changing it was. It's so amazing to see what an effect this 12-lb. bundle of white fur had on people.

We recently completed a 16-week training course to become a certified therapy dog team. We graduated in mid-May and this week we made our debut visit to the brain injury rehab floor of St. John's Medical Center [in Missouri].

Before we even got to see a patient, Ms. Chelsea found herself surrounded by a visiting family. Her little tail was wagging furiously as she looked from one person to another. She was in her element being the center (literally) of their attentions.

Our staff coordinator didn't (and won't) tell us what the patients are in for, and it's none of our business really, but she did share some feedback with us after our visit. For example, our first stop was a young woman who had half her head shaved and a visible scar along her head. She was lying down and had trouble speaking (as did most of the people we visited). The minute she saw us come in, she asked for Chelsea to be placed next to her on the bed. I put her up there on her new pretty pink bath towel (to protect the hospital bed from fur) and this woman was clearly thrilled to be in the company of unconditional love. She kept petting her and Chelsea did a great job of staying put, just like we learned in class. The patient talked non-stop about dogs, her dog, and how she worked for the American Kennel Club and knew about all the breeds. We always work in teams so my fellow classmate Cindy was in there too with her dog Coco. This patient was so happy and energized by the presence of the dogs and just wouldn't stop talking. As we left her room, our staff coordinator pulled us aside and said, "She didn’t talk at all last week!"

And so it went the rest of the visit. We met with other patients who were in various stages of recovering from brain injuries/surgeries. Some had a hard time communicating or using motor skills but all of them did what they had to in order to pet our dogs. And some of them were very chatty and excited by our visit.

At the end of the visit, the coordinator told us they saw remarkable signs in the patients...cognitive thinking, biological changes, chronological knowledge, and a whole bunch of other markers that sailed over my head (I had a lot of things already swimming around in there). We walked out of there on a cloud.

To witness a dramatic impact like this is a gift. After getting through to that first patient, all the weeks of driving back and forth to class and all the practice we did just went right out of my memory. Just knowing we made a difference to one person made it all worthwhile.

If you have a dog, I can't urge you enough to look into being a therapy dog team. You and your little furkid will benefit in so many ways...a closer bond with each other, a more well-behaved canine citizen, relationships with classmates, and the knowledge and first-hand experience of helping people.

We will be visiting there twice a month.

Advice to pet owners: Look for ways to offer your pet's love to others.

Read another pet story.

Thanks to the source, my friend Victoria in St. Louis. Bravo to CHAMP Assistance Dogs!

Kernels of corn in their shoes: A simulation of life after age 85

They put on distorting glasses to blur their vision, and stuffed cotton balls in their ears to reduce hearing, and in their noses to dampen the sense of smell. They put on rubber gloves with bands around the knuckles to interfere with their manual dexterity. And they put kernels of corn in their shoes to mimic the feel of feet that have lost some cushioning fatty tissue – all to simulate what it can feel like to be age 85 or older.

Then to work: unfolding and reading a map with tiny type, blurred by the glasses, in order to plot a driving route. And buttoning a shirt, finding a number in the phone book, dialing the tiny buttons on a cellphone, fishing change from a zippered wallet.

Dr. Vicki Rosebrook developed this set of exercises, called Xtreme Aging, to teach middle-aged and young people sensitivity to the humbling difficulties that seniors can experience. As the Executive Director of the Macklin Intergenerational Institute in Findlay, Ohio, she teaches the program to people in schools, churches, and workplaces.

She started the company three years ago, after a teenage clerk at a hotel joked about her husband being a member of AARP. “We all started sharing experiences and realizing [the] discrimination.”

Advice to people in contact with elderly patients: Walk a mile in their shoes.

Read an example of compassionate care.

Thanks to Jim Leland for the source article in Sunday's New York Times.

In the middle of the night: A lawsuit on the patient dumping of an illegal immigrant

Luis Alberto Jimenez grew up in Guatemala, and then came to the U.S. illegally. His wife and two children stayed in Guatemala. He worked industriously in Florida for several years. On Feb. 28, 2000, a drunk driver hit his car, severely injuring Luis. Luis suffered a traumatic brain injury, along with extensive bleeding, two broken thigh bones, a broken arm, multiple internal injuries, and a terribly lacerated face.

He survived, after intensive medical and surgical interventions. The hospital sent him to a nursing home. In the nursing home, he wasted away, and developed ulcerous, infected bed sores so deep that the tendons behind his knees were exposed. The nursing home sent him back to the same community hospital. Again, the hospital provided life-saving care, though Luis remained in a vegetative state, coiled in a fetal position, for more than a year.

Stunning his doctors and relatives, though, Luis gradually woke up and started interacting with people. He regained a mental level roughly equivalent to that of a fourth-grade child. But he still needed much long-term care. He had no insurance, and the hit-and-run driver was uninsured, too.

Federal law requires hospitals that accept Medicare to transfer or refer patients to appropriate post-hospital care. But the government does not finance long-term care for illegal immigrants. The hospital's discharge planners could not find a rehabilitation program or nursing home in the U.S. that would accept Luis. The hospital eventually had an air ambulance pick up Luis at the hospital in the middle of the night on July 10, 2003, and fly him back to Guatemala.

After a brief stay in the under-equipped rehabilitation hospital in Guatemala, Luis was brought to his mother's home in rural Guatemala. His 72-year-old mother now cares for him. He has no medical care. Recently he has had several violent seizures. His mother says, "Every time, he loses a little more of himself."

Too late to help Luis, a Florida appeals court decided in 2004 that the American hospital should not have sent Luis away. The ruling set the stage for a personal injury lawsuit, brought by the law firm of Searcy, Denney, Scarola, Barnhart & Shipley in West Palm Beach, Florida. The lawsuit seeks money for medical care and punitive damages for Luis.

Advice for illegal immigrants with serious medical problems: Get a lawyer to fight for you.

Read another illegal immigrant’s story.

Thanks to Deborah Sontag for the source story in today's New York Times.

The journey started from a phone call in the back of a taxi: Learning of clinical trials of new drugs.

Courtney Hudson's story
Late one Sunday evening In January 1999, my husband called me on his cell phone from a taxi. He was seriously ill and on his way to the hospital. The doctors were able to stabilize him temporarily, but they recommended additional surgery. My husband refused to undergo what would be a long, difficult operation that would require months of recovery. I was obviously upset - not only about my husband's condition, but also about his apparent unwillingness to accept treatment.

I was torn between the competing desires to respect his choices and for him to get treatment immediately. I began to search for treatment options, mainly through the Internet, but found the information presented too simplistic, too scientific, or too voluminous. By chance, a friend in California sent my husband an article about an alternative surgery that had only recently been developed. This surgery was being performed only a mile from our home in New York, yet we had never heard about it. My husband underwent the surgery, and today is doing fine.

We were lucky, but access to new treatment options, including clinical trials, should not be serendipitous. This is a time when pharmaceutical companies, biotech companies and the government have enlisted the support of nearly 50,000 doctors to conduct more than 10,000 clinical trials each year -- almost one-third are designed to test new drugs and therapies for cancer patients. Patients and families should have a way to find these new drugs and therapies without having to depend on luck.

After months of interviews with patients, advocates, caregivers, and researchers, Sarah Hutter, Glenn Rice and I founded EmergingMed.com in January 2000 to offer patients and their families a fast and easy way to find and understand available treatment options.

We have created the EmergingMed online matching and referral system to reliably connect patients directly to the doctors conducting clinical trials in a matter of minutes.

This personal journey, which started with a phone call from the back of a taxi, will hopefully benefit many others by providing more options for their own treatment and by accelerating the clinical research process that develops new drugs and therapies for all of us.

Advice to patients thinking of surgery: Figure out all your options first.

Read another clinical trial story.

Thanks to Courtney Hudson for the source at the EmergingMed.com website.

An extension of his work as a doctor: A memoir by a sufferer of Lewy Body disease

Fifteen years ago, he had been a member of the Cardiology "Dream Team" assembled by the Boston Celtics to evaluate Reggie Lewis after he collapsed during an NBA playoff game in 1993. And he was a professor at Harvard Medical School.

But nowadays the former marathon runner is stooped, and shuffles when he walks. Most notably, the disease has robbed him of the ability to communicate clearly, logically and quickly. Dr. Graboys has Lewy Body dementia, a syndrome that affects a third of Parkinson's patients.

Even with this humbling disease, Dr. Graboys was eager to tell his story because he thought it might be helpful to others facing their own medical struggles. He wanted to capture his experience on paper quickly, because he didn't know how much longer he would be able to tell his story.

He contacted Peter Zheutlin to write his story. Dr. Graboys was an unusually gifted clinician and an unusually compassionate doctor who believed his most important diagnostic tools were his ears; he listened, and his patients loved him for it. In turn, he valued each patient's trust as a gift offering a window into the human condition.

Over the course of a year, he and Peter met twice a week at his home in a suburb of Boston, and he gave Peter an intimate tour of his life and his mind Peter's book tells of the toll the illness has taken on his sex life. It may be too frank for some, but Dr. Graboys was intent on being as brutally honest as possible. As a physician, he had created an atmosphere in which patients felt safe in disclosing their most personal concerns. He understood that mny of them were relieved to find a physician with whom they could talk comfortably about sex.

The book became a focal point of his life after he had to retire from medicine in 2005. Writing it was an extension of his work as a doctor. He proved that despite what he lost, he could still share abundant knowledge and wisdom.

Advice to people with a chronic illness: Tell your story to share your life lessons.

Read another story about Lewy body disease.

Thanks to Peter Zheutlin for the source article in the June/July issue of Metrowest Magazine.

I’m sooooo beat up: An overworked nurse's medication error

I've been an LPN for a month. I made a med error this week...Gave .50 mg of Ativan instead of .25 mg. Devastating.

On top of that, I was called into the ADON's office to see how they could help me from having so much overtime on my charting.

I'm soooo beat up. I have 40 residents to care for, and I had CNA's that were gone during the 6am med pass to leave me alone with my residents taking them to the bathroom, etc...They didn't ask to break, and if they had, I would have asked them to wait until my meds were passed.

I try hard to allow as many breaks as possible. I try to help them, because I know what it was like being a CNA...needing help and not getting it...

Here I am...

Med Error, Overtime...

I feel I already take too many "short-cuts" for a new LPN to be taking, and some of the things that go on on 3rd shift...that we are "taught" to do...I won't do anymore. It's not worth it to lose my license.

I hope it is not too late for me.

Advice to people needing to go into the hospital in July or August: Bring a patient advocate, as the new crop of residents has just begun work.

Read another story of an overworked nurse.

Thanks to LookingBeyond [no name given] for the source blogpost today at allnurses.com/forums.

He needed surgery again: A settlement for a defective artificial hip gets justice for one, but no registry for all

Months after his hip replacement, "the pain was grabbing me around the back," said Stephen Csengeri, a 54-year-old lawyer from California. He needed surgery again because of the pain. He has reached an undisclosed settlement with Zimmer Holdings, the maker of his metal hip socket.

His orthopedic surgeon, Dr. Lawrence Dorr, realized that Stephen was one of many hip replacement patients with the same problem. Dr. Dorr contacted the device's manufacturer. X-rays showed the socket was separating from bone, rather than fusing with it. For patients, who had been told their new hips might last 15 to 20 years, it meant agony as the metal cup moved around in the hip socket and rubbed against bone.

One doctor told Dr. Dorr, "If ever there was an example of why we need a registry [recording all patients’ hip appliances], this is it." A registry is a database of each patient, the brand, model and type of appliance implanted, the surgical technique used, the doctor, and any subsequent replacement. Orthopedists in Sweden and Australia have used such registries to learn of systematic problems with particular devices. But there is no registry in the U.S. As a result, there is no systematic way for the public to know of patterns of problems.

Advice to joint replacement patients: Look into the devices beforehand on domestic and foreign registries and on the Internet.

Read another medical device lawsuit story.

Thanks to Barry Meier for the source story in today's New York Times.

I am downright annoyed with my diabetes: Self-care

Motivation Consternation
I don't know about you, but I find that the novelty's wearing off. After nearly three years of continuous carb counting, fingerstick checks, pills, injections, lab tests, prescription woes and doctors' appointments, I am officially DOWNRIGHT ANNOYED with my diabetes. I find myself wondering how the veterans do it. How do you "keep up the good work" as your diabetes care drones on and on over weeks, months, and years?

Seems like it's quite natural to go through up and down phases, for sure. But even with the most diligent of care, diabetes can be terribly unpredictable. And often our test results just don't seem to show improvement. Don't you just want to scream? Or give up?

But of course we must soldier on. It might help to examine these feelings more closely, and there must be some proactive things we can do to kick-start our motivation every so often.

Failure & Burnout


Feeling like a failure? You are not alone. Some of the most motivated, well-informed diabetics I know are still asking themselves, "What am I doing wrong?" because their blood sugar levels aren't in "perfect range." I must say that if I learned anything from my endocrinologist, it was that "sometimes the magic works, and sometimes it doesn't." When we have bad diabetes days (or weeks), we just have to pick ourselves up and move on.

But of course, there's a boatload of guilt associated with less-than-optimal care. Maybe you've been ignoring your diabetes or struggling with it for many years, and feeling pretty crummy. And all the negative headlines about diabetes and heart disease, gum disease, kidney damage, blindness, etc. certainly don't help your incentive.

I know people with other illnesses have to be diligent, too, but I strongly believe that no other disorder requires such intense, round-the-clock attention and motivation as diabetes does. It can really grind you down. Like Dr. William Polonsky, author of the book "Diabetes Burnout" says, "In order to get everything right all the time, you'd have to be a 'Professional Diabetic.' You'd never have time for anything else…

So you have to find a balance between making an effort for good control and having a life."

A New Toy, or Study Me


Sometimes a new gadget or treatment can really make a difference. I've met quite a few Type 1 diabetics who either get themselves a new meter or new pump periodically, or sign up for clinical studies on a regular basis. Ideally, the new gadget makes a significant improvement in your quality of life. For example, I was delighted when I got the FreeStyle Flash glucose meter, because it requires just a tiny blood drop, and it's small enough to fit into a cute, fashionable purse (instead of that suitcase I'd been carrying)!

Another gal I know was delighted with the MultiClix Lancing Device because she finds it painless and convenient (pre-loaded lancets mean less waste and carrying load).
Being part of a clinical study means your health gets lots of extra attention, both from yourself and from the medical professionals running the study. Added benefits are free stuff – the sponsoring company pays for supplies and exams – and the knowledge that you are helping the diabetes community and further generations by fostering important research. Some people find they get their best care and motivation under this kind of close scrutiny.

Amy Tenderich’s Advice: It's worth asking your CDE (Certified Diabetes Educator) about new products and research opportunities (those without any serious health risks).

Browse for related stories in the index at the very bottom of this page, or read a diabetes education story.

Thanks to blogger Amy Tenderich for the source story at DiabetesMine.com

So I might as well do it: Pan-Mass Challenge

Rebecca Hopkins, now a junior at Salve Regina University in Newport, Rhode Island, has survived a brain tumor, surgery, chemotherapy and radiation. She will be one of 5,000 bike riders next week in the Pan-Mass Challenge, the annual 192-mile bike ride to raise money for the Dana-Farber Cancer Institute.

She will ride in honor of her doctor, Samuel Blackman, who treated her when she was a teenager.

"To be able to help people and give them a better life, that's great," she said. "It's something I can do, so I might as well do it."

She was first diagnosed with cancer at age 11. Part of her brain tumor was removed, but began to regrow in a few years. After radiation, she is now virtually symptom-free.

Dr. Blackman says, "When you save a pediatric patient, you don't just save a life, you save a future. Rebecca and her fight are proof positive of that. This is a person who I know is going to make a difference in this world."

"We have the cachet of being the Tour de France of charity events," said Barry Starr, the founder of the fund-raising event.


Advice to cancer survivors: Keep on truckin’. And bikin’.

Read about another Tour de France cyclist and cancer survivor.

Thanks to Adrian Walker for the source article in today’s Boston Globe.

I'd land at the hospital again, if not for this: Telemonitoring

Mariano is 87 and lives in a suburb of Boston. He struggles with "a few health problems – heart failure, glaucoma, and I know I have some [heart] ventricles that are not functioning properly."

He's one of five million people who are living with heart failure. It's a chronic, life-changing condition that impacts his whole family. His daughter Michele visits frequently to help take care of him.

"Everybody in that position knows it's difficult," he says.

After his most recent hospitalization, he came home with a new type of helper. "I'm being checked every day by nurses, at headquarters, I presume. The nurse contacts me separately. If I put on a pound or two, I get a call, sure as heck. That helps so much! I'd land at the hospital again, if not for this."

He's a participant in the Cardiac Connect Program at Partners Healthcare, which was designed for people with heart failure. It brings state of the art equipment to homes, to help monitor heart conditions daily.

"What's important for cardiac care is what patients do daily at home. Telemonitoring is a great tool," according to Dr. Stephanie Moore. "What's important is NOT what is in the 20-minute office visit, and what they say they're doing, but what they're really doing at home."

Patients use the equipment at home to monitor their heart rate, oxygen levels in their blood, and their weight. They answer a few questions about how they're feeling, which takes a few minutes, and that's transmitted electronically to the Home Care program's nursing station.

"The system identifies any problems, and we'd call those patients immediately," says nurse Susan Leonard.

They might ask, "I've noticed your weight has gone up by two pounds. How are you feeling? Did you have a lot to eat with sodium yesterday?"

Mariano's daughter Michele says, "It make me feel comforted that he can operate it himself and knows what ranges he should fall in."

He says, "It created a little more confidence. Once the machine is gone, I'll do my best to carry on, since I know the Why's, and the If's, and the Don'ts."


Advice to people with serious chronic illnesses: Ask your insurer and doctor what kind of ongoing help they can give you.

Read a story on the role of education in coping with chronic illness.

Thanks to the Center for Connected Health for their source video.

Without getting out of my chair: A medical home

Robert Williamson, a 60-year-old Philadelphia resident, recalls the cursory exam he received a few years ago from a harried doctor who missed seeing some danger signals, and sent him home. Robert had a stroke a short time later. He had to stop working as a customer service representative, and go on Social Security disability.

Missed diagnoses like these should occur more rarely with his new doctor. "I give him my heart and diabetes readings by email and phone, without getting out of my chair," Robert says. "I can get better directions, at the very moment I need them. It's life-saving."

Some of the area's largest insurers are conducting an experiment with 100 physicians. In addition to paying for office visits, the insurers are paying the medical groups to keep better track of their patients by phone and email. The doctors are encouraged to hire additional staff to monitor patients' treatment and follow-up, and send reminders for mammograms, colon exams, and other forms of early detection. Robert's doctor has hired a patient educator and has acquired supporting technology.

This model of primary care provides a "medical home" where doctors, patients and families will ideally pull together as a big, happy family. Insurers are studying whether this will lower their costs and improve patient satisfaction.

Advice: Ask your primary care physician whether he or she can contact you proactively and regularly about follow-up care and upcoming appointments for early detection.

Read another story on how a more modern doctor's office feels to a patient.

Thanks to Milt Freudenheim for the source story in the July 21 issue of the New York Times.

Is it better to bring 8,000 individual cases?: Pathology errors in breast and prostate cancer biopsies

Patients impacted by a misdiagnosis and the quality of service at the Miramichi Regional Hospital will file a class-action suit on Tuesday.

Halifax lawyer Raymond Wagner will file the proposed lawsuit in Miramichi on Tuesday. It is available to any patients who had a biopsy or other procedure at the Miramichi Regional Hospital between 1995 and February 2007, regardless of their test results.

"They suffered great mental distress, frustration, and needless anxiety while awaiting confirmation that the original results were correct," he said.

The province is reviewing more than 23,700 cases from the hospital dating from 1995 to 2007 while a public commission is examining the rate of breast and prostate cancer misdiagnoses.

An independent audit of 227 cases of breast and prostate cancer biopsies from 2004-05 found 18% had incomplete results and 3% had been misdiagnosed at the health authority in northeastern New Brunswick, which was being served by a now-suspended pathologist.

Filing a lawsuit will hold the system accountable, Wagner said, adding that arguments revolve around allegations of negligent hiring and poor quality control at the pathology department.

"The suit of course is to assist the people in the community surrounding the Miramichi with respect to their health care," he said. "It is to bring to account the hospital administration with respect to oversight and quality control and to assure the community that their health care is of sufficient quality for them to have confidence in that health care."

A judge will have to decide if the suit will go ahead, which will involve testing whether the lawsuit is the most efficient way to proceed, Wagner said.

"Is it more appropriate and more efficient to have the case determined in one case, or is it better for everybody to bring their own individual cases, in other words 8,000 cases?" he said.

The Halifax law firm, Wagners, is working in co-operation with Newfoundland and Labrador firm Ches Crosbie Barristers.

Advice: Pathologists have to use very subjective judgments in assessing biopsies. Ask the pathologist how certain s/he is about the findings of your biopsy.

Read another Pathology error story.

The source article comes from a posting today on the Canadian Broadcasting Corporation's website.

More days happy than in the blues: A coach for diabetes care

Maria is a 66-eary-old Hispanic woman with diabetes. She receives her primary care at Massachusetts General Hospital's Chelsea health center. At her last visit in June of 2006, Maris had far too much glucose [sugar] in her blood; her hemoglobin HbA1c was 12.6, far more than a normal level of about 7. Her doctor referred her to a diabetes "coach," a multilingual, bicultural layman trained to identify barriers to care management and to assist patients in addressing barriers.

After several counseling sessions, the coach learned that Maria was taking one of her medications "only when I feel my blood sugar is too high," and was not taking her other medication at all because "it makes me dizzy." Maria was overweight, and ate a lot of rice, bread, pasta and other carbohydrates, and foods high in cholesterol like pizza, pork, meat, and fried food. She would not eat at all when she felt that her blood sugar was elevated. She was not exercising and reported often feeling depressed and "in the blues."

After working with the coach, Maria began taking both of her medications regularly and eating better. She cut down on carbohydrates and started eating more vegetables and fruit. She also ate more frequently in small portions. Due to her arthritis, exercise was a challenge for Maria, but she managed to walk 20 minutes on most days. In just a few months she lost 30 pounds. After 11 sessions with the coach, Maria felt very pleased with her progress, she is more confident, and has "more days happy than in the blues." When last seen by her coach in December, Maria's hemoglobin HbA1c had fallen to 7.7.

Advice for people with diabetes or another chronic health issue: ask your insurer to assign you a health coach.

Read an athlete’s diabetes story.

Thanks for our source, the 2006 Annual Report on Mass General's Community Benefit Program.

An hour after being discharged from the Emergency Room: A family physician's conflict of interest

Question for the Ethicist:
I am a family physician. A patient I'd not seen in months passed away about an hour after being discharged from an emergency room. Her mother, also my patient, asked me to review the records and autopsy to see if she should bring a malpractice suit against the E.R. physician and the hospital. I am friends with the physician and on the hospital's board. Ought I to comply with this request?
-J.R., Connecticut

Answer:
You should not. Indeed, you cannot – not properly, not without risking charges of bias. Your attachment to your friend and your position on the hospital’s board create – or may seem to create – divided loyalties. You should recuse yourself from this task, explain to the patient's mother why you are doing so and refer her to a disinterested physician with the expertise to review the records and advise her how best to proceed.

Update:
J.R. met with the family but did not offer a medical opinion, explaining that the records offered insufficient information for him to do so. He said he believed that they would not be satisfied unless the matter were investigated further and so suggested they speak to a lawyer who would have a neutral expert review the case.

Read about another ethical issue.

Thanks to Randy Cohen for the source story in the Ethicist column in the New York Times Magazine of May 25.

His last, best and only chance: Experimental drug for Duchenne muscular dystrophy

Doctors discovered that Jacob Gunvalson had a rare and devastating genetic disorder – Duchenne muscular dystrophy - when he was 7 or 8, about eight years ago. Many of the young men who have the disease, which nearly always affects males, do not live past their 20s. A biotechnology company is now testing an experimental drug, PTC124, which would give Jacob "his last, best and only chance to slow, stop or even reverse the effects of his condition," according to his attorney, Michael Hatch.

But the company refuses to give Jacob the drug, as he does not meet the narrow guidelines for the research protocol. The reason: scientists at the company worry that it may not be effective for a patient at Jacob's stage of the disease: Jacob can no longer walk. If the drug is known not to be effective in him, the company executives worry that that news may block the company's chances of proving it is effective and bringing it to market.

Jacob's mother Cheri, who has a masters degree in nursing, seems to have done all the right things. She has been active in a parent's advocacy group, Parent Project Muscular Dystrophy, which has helped PTC Therapeutics, the drug maker, to find financing for its research. Indeed, she was instrumental in getting federal legislation passed to provide more research money for the disease.

The company may even have told her that it would give Jacob the drug. Drug companies sometimes allow patients access to experimental drugs through a "compassionate use" policy. In this way, patients enroll in a single-patient study, or participate in a clinical trial, even if they do not meet the eligibility criteria and their results are not included in the final study.

In the absence of that, both Jacob and his mother are bitterly disappointed, after thinking "so many times," he said, that he would receive the drug. He is increasingly too tired to do some of his favorite activities like cooking and painting.

Advice to family members of gravely ill patients: Explore compassionate use if an appropriate drug is in clinical trials. If the answer is no, take your story to the news media.

Read an experimental drug story.

Thanks to Reed Abelson for the source article in the July 17 issue of the New York Times.

She turned 104 in April: Aggressive treatment for centenarians

Her father had sent her to secretarial school. She married, and then split up with her husband, a traveling salesman, during the Great Depression. She worked as a stenographer to pay rent to her parents for a small sunny bungalow overlooking a canal in East Rockaway, New York. She retired in 1961.

Then in 2003, when Hazel Homer was 99, after several recent hospital stays, more than one doctor advised that there was little to be done about her failing heart except wait for it to fail a final time. But Hazel was not interested in waiting to die of old age.

She kept talking to doctors until one agreed to install a biventricular defibrillator, five years ago. Now, at 104, her heart is still ticking, thanks to the specialized pacemaker and defibrillator that synchronize her heartbeat and can deliver a slight shock to revive her if her heart falters.

So far, it has never needed to shock her heart out of a potentially fatal arrhythmia.

Hazel now has a live-in aide at her tiny bungalow. She has been quite healthy throughout her life. Indeed, since the surgery, she has had only a single hospital stay, a brief one for pneumonia.

Her operation, a month before her 100th birthday, reflects a new frontier in medicine: surgery for centenarians. Some say, however, that aggressive treatment for the extremely elderly can give patients false hope and a diminished quality of life.

Advice to adult children of extremely elderly parents: Heed your parent's preferences about aggressive care, rather than your own.

Read a story about aggressive care on the other side of the coin.

Thanks to Anemona Hartocollis for the source article in today’s New York Times.

I became poor trying to save her: Unaffordable cancer care

After Dave Williams learned in April that the mass in his neck was malignant, his doctor referred him to a local cancer center. At his appointment, he was stunned at what he heard. "They said, 'We're looking at $30,000 of treatment, and we need $20,000 upfront,'" says Dave, 62, of Beesville, Texas. I don't have that kind of money."

For the retired landscape designer, the hospital's demand was an especially heavy blow, since he had recently paid off $273,000 in out-of-pocket costs for his ex-wife's care for ovarian cancer (his employer-sponsored health plan refused to cover her because she had cancer when he enrolled). "I became poor trying to save her, but she died," he says. He now lives in a trailer on a friend's property.

He applied for "charity care" at other hospitals but was rejected because he has saved about $10,000 in a 401(k) retirement savings account. "They all asked for a lot of money upfront before they would do anything to help me," he says. Dave is still exploring his options.

Advice to people with ruinously high healthcare expenses: Almost no one pays the full retail amount of a hospital's charges. The typical insurance plan gets a discount of about 60%, according to Sid Kirchheimer, so negotiate aggressively, or get someone who can.

Read a story of how universal health insurance has helped people who have found it hard to pay for their care.

Thanks to Sid Kirchheimer for the source article in the July-August issue of AARP Bulletin.

Easy for the drug dealers to sneak into your living room: Online drug sales

"The Internet made it easy for the drug dealers to sneak into your living room," said Francine Haight of La Mesa, California, whose son Ryan died in 2001 at 18 from an overdose of hydrocodone, generic Vicodin, which he had secretly ordered online with a debit card. An A-student and varsity tennis player, he had claimed in an online questionnaire to be a 25-year-old with back pain. He got his prescription and received the drug in the mail. His mother, a registered nurse, has fought against online sales since then.

In April, the U.S. Senate passed the Ryan Haight Online Pharmacy Consumer Protection Act, which would require certification of online pharmacies. It would also require doctors see patients before prescribing controlled substances. The bill is now in committee in the U.S. House of Representatives. At least eight states have passed laws barring electronic prescribing or sales without a legitimate prescription.

"Abuse of prescription drugs has exploded among college students, and…one way they get these drugs is over the Internet," said Joseph Califano, the director of the National Center on Addiction and Substance Abuse at Columbia University. The use of prescription opioids and anxiety drugs, especially in combination, accounts for a growing share of deadly overdoses nationwide.

Advice to parents of college students: Read their monthly credit card statements.

Read another prescription drug overdose story affecting a well-known actor.

Thanks to Erik Eckholm for the source article in the July 9 issue of the New York Times.

We are not foolish, selfish or blind: Use of Avastin for a glioblastoma

We continue to put our hopes for my father-in-law's health in Avastin. He is being treated off-label with Avastin for a glioblastoma. We are not foolish, selfish or blind for putting our hope in this expensive and controversial treatment.

When all other available treatments have an even smaller chance of providing any benefit, Avastin's positive results – however sparse – are extremely valuable to us.

The hope this drug provides our family is just as important to prolonging my father's life as the drug itself. Like many affected by cancer, we are smart advocates who do our research and know the odds. But no doctor or research study has ever told my father he couldn't be the outlier.

Advice to the families of cancer patients: Keep hope alive, and heed your cancer patient's preferences.

Read a story of a famous long-shot "outlier" survivor.

Thanks to Jana Jett Loeb for the letter to the editor, published in the July 12 New York Times.

Not a moment too soon, I thought of Tim Russert: Early warning signs of heart attack

Most Saturday mornings, I bicycle with a group of men, mostly in their 50s, whom I affectionately call the Cheat Death group. We are all in pretty good shape, competitive but supportive, and convinced that hard-core exercise is our ticket to postponing the inevitable.

The ride a few Sundays back was a tough one. At 6:30 am, the pack took off fast and immediately headed for the hills near Durham, New Hampshire. The first few climbs felt pretty good, but by the third hill I started to feel nauseated.

Figuring that was probably a result of the four beers and large Chinese dinner the night before, I kept going. Twenty-five mles into the ride, I had fallen to the back of the pack. I was short of breath and wondering how I was going to make it much farther.

I am someone who hates to quit. But after the third time the group had to stop and wait for me, I decided I had no choice. I watched them pedal away, then lay down in the grass. Besides the nausea, my only symptoms were a persistent cough and an overwhelming feeling that something was not right. I called my wife and got a ride home.

I started thinking: Though I'm a 50-year-old guy with a stressful job and a little too much around the middle, I had a clean bill of health. I had good cholesterol numbers and a great doctor, and recently I had passed a cardiac stress test.

That's when Tim Russert popped into my head. I bolted out of bed and Googled a list of warning signs of a heart attack, according to the American Heart Association. Nausea: check. Shortness of breath: Check. Chest discomfort: Perhaps, though it really didn't feel like much.

Ignoring the web site's advice to call 911 (I was too vain to have an ambulance pull up to my house), I drove to the hospital.

I was having a severe heart attack – despite the stress test, the red wine, olive oil, and all my exercise. They gave me a stent in the cath lab [for "cardiac catheterization"] to open the artery that had suddenly been blocked by a blood clot.

As in Tim Russert's case, there had been no warning signs. If I had not gone to the hospital, I might very well have died.

Advice to middle-aged guys like me: Listen to your body. Michael risked some teasing by his bicycle buddies and quitting the ride, and going to the hospital, and it saved his life.

Read a story of appropriate care after getting a stent.

Thanks to Michael Bicks for the source article in the July 8 issue of the NY Times.

He doesn't make mistakes: Cadaver grafts for ACL knee surgery

An orthopedic study, released yesterday, found a 24% failure rate in operations on young athletes who get a cadaver graft [from a dead person] in knee surgery to repair an ACL ("anterior cruciate ligament"). Many have discussed whether Tiger Woods should have this surgery. Here's the story of Keith, an avid amateur soccer player in California:

Having played an awesome game of soccer on Saturday the 15th, on Sunday July 16, 2006 I decided to help out a teammate and play for his team since they were short. The league that I play in have artificial turf fields. The league my teammate played in used various grass fields. On this particular day, it was an awful field of a junior high school. I had just recovered from a mild Achilles tendon strain to my right heel, so jokingly I stated "there's a hole out there w/my name on it, watch." 

Unfortunately, I was right, but had no clue what was in store for me. With maybe 10 minutes left in the game, the other guy playing forward w/me was on a breakaway. I was running with him, wide open, so he crossed the ball to me leaving me 1v1 with the keeper (who sucked btw). It was a simple setup that I've played through many times before: a quick cut to the side and pass the ball in. That's all I had to do. So, I did just that. 

Or attempted.

What happened, to my recollection, was that I tried to cut to the left w/the outside of my left foot. Somehow in my footing my left leg got stuck as if I couldn't lift it up quick enough. Maybe I stuttered in my steps while trying to quickly change my direction or something, but my leg was firmly planted as the rest of my body moved over it. Before I knew it, I was on the ground, my knee having bend backward and to the inside a bit and having heard a pop. I was in the most excruciating pain I've ever felt in my life, and as I was literally digging out clods of dirt and grass from the field I could only say two things, "f***" and "oh s***!" I didn't even move for a few minutes (from the ground that is). When a teammate shouted to the sideline "get some water" I blew up. "I DON'T NEED ANY F***ING WATER, WATER ISN'T GONNA HELP ME!" 

And it figures, because with my Achilles tendon strain, I bought and brought a bag of ice from Ralph's every game. The one day I don't do that is the day I tear my ACL, and some ice would have been nice initially. Anyway, when my teammates helped me up, I tried to walk and immediately my knee buckled. It was as if it were jelly, just no stability at all. The fact that somebody else said they heard a pop was a bad sign, but for the time being I had hoped that it was just a severe hyperextension. In high school I hyperextended my knee a few times and may have had Osgood Schlatter's disease (it was a debate, I had a lot of the symptoms but currently show no sign of ever having it).

My 1hr+ drive home was nervewracking because I started analyzing what could be wrong and what it could mean for the rest of MY season (screw my teammate's season!), and where the heck should I drive to. The urgent care I had intended on going to was apparently closed even though they have "24hrs 7 days a week" posted on their window. In tears from the pain, I made it to the hospital (having never been there before) and apparently parked the furthest distance from the urgent center as possible. In time I got a wheelchair and X-rayed, and 4 hours later (it was a long wait) was told to see an orthopedic surgeon. My leg/knee was in an immobilizer brace and a friend picked me up and took me home.




THE SURGEON

The next day, Monday July 17th, 2006, I went to Blue Cross' website and found the closest orthopedic surgeon to me and called. They had an opening if I could get there in 1/2hr, so I lucked out. The surgeon asked me a series of questions and prodded around my knee for a bit, injecting a giant needle into my knee and pushed out a TON of blood. The needle felt like it was going so deep so as to hit the bone, but it wasn't. Definitely painful while it lasted. I wish I could say the amount, because it was a lot even for an ACL tear, but must have been 4-6 CC's worth. He sent me off to get an MRI as it was the only way to tell for sure what was wrong. I had my fingers crossed for a "best of" situation, meaning I didn't want it to be an unhappy triad (torn ACL, MCL, and torn meniscus), but I wasn't gonna be happy with an ACL tear either. During this time, I had not only the immobilizer brace but was on crutches too. Anyway, a few days later I got the MRI results and sure enough...ACL complete tear. Unfortunately, my stupid surgeon was going on vacation to the Caribbean for THREE weeks! I wanted the surgery right away and this wasn't going to help. So, I painfully had to wait nearly a month in order to have it. At some point I got a hinged immobilizer brace which was a lot better than what the hospital gave me. This new brace had hinges which you could lock into various degrees of flexion and would be key mostly for after the surgery. So anyway, let's get to that already shall we?



THE SURGERY

Finally, the big day came: Friday August 25th, 2006. The process I was told would take about 1hr 15 minutes, which I found surprising, but I guess it's not that long for a non life-threatening surgery, heh. The method of surgery was an allograft: a cadaver graft, meaning some dead guy's Achilles tendon was used as opposed to a hamstring (or patellar tendon) autograft. My surgeon explained he preferred this method because it doesn't require cutting into your own body. Why heal from 2 places when you can do it from 1? Fortunately, despite his jackassery of leaving for 3 weeks, he's a very good surgeon in LA. I got extremely lucky by finding him at random!

 The morning of the surgery, I wrote a giant "NO" on my right knee as it is my healthy knee. The docs later laughed at me for doing that, because "he doesn't make mistakes." But hell, why take the chance? Anyway, I was told that after the surgery I would be sent home: an outpatient. I found that cool because who wants to be in a crappy old hospital? BUT, the surgery didn't go quite as planned. Apparently my surgeon's assistant was also assisting another surgery, so rather than 1hr 15 min, it was 4 friggin hours! But, it was a success. I woke up and they wheeled me out of the recovery room and into a room in the hospital...so, rather than being an outpatient, I was an inpatient and had to spend a night in the hospital. 

That night was the longest friggin' night of my life. I knew that surgery would be painful, but I figured that knee surgery was small in comparison to hip replacement, shoulder surgery, etc...WRONG! Sorry to say but you're gonna have pain and it's gonna be extreme. I was asking for morphine every 4 hours on the hour and didn't sleep for s***...kinda sucked. I didn't eat nor drink much while there either. The next morning was quite a task as it was time to go home. Time to go home after going through traumatic surgery and having no food in my stomach. It also meant moving with a recently-operated knee. A therapist-type guy came in and helped me out of bed (painful) and showed me how to go up and down stairs w/crutches. After a long process of getting me into a wheelchair, into and out of my mom's car, and into my bed...I was home. Aside from moving, there really wasn't much pain...from surgery and on I only took 3 Vicodin pills and honestly didn't really need them. This is to say that while laying on my back all day I wasn't experiencing pain. Getting in and out of bed (basically, when my leg wasn't laying in bed) hurt, but that's to be expected. Maybe 3 inches below my knee was, and still is to this day, numb because apparently they have to cut through a nerve, but the area is only 4x3 inches? Its not bad, but it's one of those things that I'd like to have back just because I'm supposed to. 

There are some other side effects of the surgery such as lightheadedness. Considering you're stuck on your back for such a period of time AND a loss of blood/traumatic surgery AND your usual eating habits have been changed temporarily, it's entirely natural, but I tried to sit up when possible to read, etc. 

So, my surgery was Friday Aug 25th, right? Well, Wednesday August 30th I was back at my surgeon's office for a followup, and my first day of physical therapy. I guess this leads us to our the next point...



THE RECOVERY

The goal of therapy is to achieve full flexion (bending) and extension. When I saw the therapist the first time, he just did some electro-pulse type stuff on my knee. I've done it before back in high school so it was nothing new. Because a little more than a month passed between injury and surgery, my leg muscles atrophied pretty bad. If there's one thing I've always had pride over, it was my muscular soccer legs, heh. My right leg hadn't changed, but my left was kinda chicken-legged. Most notably, my quads. 8 months later, my quads are still diminished...better than post-op, but still not to where they need to be. I'd like to say that my therapist didn't have me work on them in the early stages of therapy. He stressed that the hamstrings are really important because they're the muscles that aid flexion. But, I still feel like he neglected them when it was key because I'm only doing 15 lbs on my left leg...it's not that my muscles can't handle the weight, it's that the ACL is still weak at this point. Which is normal.

Advice: Look into other patients' stories thoroughly before choosing elective surgery.

Read a more grim story of a young athlete's knee surgery.

Thanks to Keith, and to Drs. Kurre Luber and Gene Barrett for their presentation at the 2008 American Orthopaedic Society for Sports Medicine's Annual Meeting.

With hormone pills, radiation, surgery and grit: Skin lotion for cancer patients

Kairol Rosenthal, 35, is a choreographer and writer in Chicago. For the last seven years she has battled thyroid cancer with hormone pills, radiation, surgery and grit. She has had to contend with 101-degree fevers, heart palpitations, and a severe lack of appetite.

The hormone therapy to slow the growth of the tumor, leaves red blotches on her face and bone-dry patches along her jaw line.

"I have not yet made my peace with skin that doesn't look good," she said. She spends much of her free time in hunting for news about thyroid cancer. She is writing a book about living with the disease.

Radiation can cause what looks and feels like a sunburn on the area that the beam passes through to get to cancerous cells. Chemotherapy can make the skin and lips feel dry and itchy because it indiscriminately tries to damage all fast-growing cells, including skin cells.

Kairol heard a radio ad for Lindi Skin, a skincare line of products designed for cancer patients. Several companies now make skincare products for cancer patients.

Depending on who you ask, such products give patients one more tool to ease side effects, or a false hope that a costly lotion will be more effective than a mild drugstore lotion.

Oncologists and dermatologists are now looking into these products because cancer-fighting drugs called targeted therapies can cause rashes so severe that some patients threaten to drop out if they are left untreated. As of now, there is no scientific study that shows these products are any better than less expensive and less glamorous products like Cetaphil or CeraVe.

Yet some patients prefer them. Dianne Dassa, a breast cancer patient in New York, said the Lindi body wash and serum helped heal her radiation burn and her psyche. And "they were so beautifully packaged, I felt like I was getting a gift."

Advice: As a gift, you can give the fancy lotions to the cancer patient you care for. Cancer patients themselves can buy the less expensive drugstore products that have been shown to be effective.

Read a story of an entrepreneurial cancer survivor.

Thanks to Kayleen Schaefer for the source article in today's NY Times.

They said it was a new policy, just out: Denial of care for an insured undocumented immigrant

Over the Memorial Day weekend, a 9-year-old girl in the Bronx, New York went grocery shopping with her mother. A man banged into Lauren's left arm with his cart, tearing away part of a big mole. Her mother brought her to the local hospital's Emergency Room, where a biopsy of the mole revealed that Lauren had a serious skin cancer - melanoma.

At a cancer hospital, she was scheduled to have the mole, surrounding tissue lymph nodes in her arm removed, and to have scans of her lungs and liver. Yet no treatment has started: Lauren was born in Ireland, and is not a legal resident of the US. Since age 4, she has had regular checkups and immunizations through a managed care company that was set up by the Roman Catholic bishops of New York under contract with the state to provide Child Health Plus insurance – which had been created precisely for children who did not qualify for ordinary government insurance.

Her mother said, "Around the 14th of June I got the call that since she did not have any [legal] status, her request was being denied. I never heard anything about this until she got sick. They said it was a new policy, just out."

Though several employees of the insurer have said the matter has been resolved, Lauren still has not received treatment. Most recently, the surgery, which had been rescheduled for Wednesday, was further postponed because the hospital is not a member of the insurer's network of providers.

Advice to undocumented immigrants needing health care: Your local newspaper and your congressman may be strong champions. The Irish Times and the office of U.S. Senator Charles Schumer are now helping Lauren.

Read another child’s healthcare access story.

Thanks to Jim Dwyer for the source story in today's NY Times.

It's an inconvenience, but the alternative is death: Paying for cancer drugs

William Dexter, a 67-year-old retired Air Force sergeant and mail carrier, had been coming to his doctor's office for monthly intravenous immune globulin infusions to bolster his immune system after a bone-marrow transplant, radiation and chemotherapy and other drugs for non-Hodgkin's lymphoma, a cancer of the lymph system.

The infusions can leave patients drained and shivering, with low blood pressure. William liked getting them in his doctor's office, where nurses comforted him with coffee, blankets, and chats about his dogs and military history.

But with the gap between his Medicare policy and his doctor's expenses, the doctor's medical practice was losing about $500 on each infusion. Now, instead of one monthly doctor visit, William makes two 90-minute round trips: one to the doctor for a checkup and to open the IV port in his chest, and another to the hospital, where the four-hour infusion involves more delays and less comfort. "It's an inconvenience, but the alternative is death," William says.
"I knew the doctor had to do it to stay in business."

Advice to cancer patients who need to take costly drugs: Ask about the drug company's financial aid programs.

Read another chemotherapy story.

Thanks to Marilyn Chase for the source article in today's Wall St. Journal.

For an audience of one: A hospice musician

As Judith Jackson recalls, last October "my mother was in her final week of life when Marcia [Feldman] came to play for her. It was a wonderful gift not only to my mother but to me. I was spending hour after hour sitting at her bedside, and then Marcia would come in and play this very soothing music. The nurses told me the last thing to go is the hearing. And my mother always loved that type of music."

Marcia, a classical guitarist, is a hospice musician. She has educated herself in the musical traditions of a variety of cultures, so that she can best match the music she plays to the heritage and preferences of the patient she is playing for. "Even when patients are too sick for verbal expression, the nurses can tell me when they are responding well to my music – their breathing may become less labored, for example," she said.

Marcia first began thinking about the connection between death and music when she lost her father 20 years ago. "His situation did not involve hospice care; he died suddenly. But something about the process of grieving for him made me think increasingly about the role music plays at our most troubling times," she said.

She has recently released a new CD, "Between the Worlds."

Advice: Consider bringing some music for your loved one in hospice care.

Read another hospice story.

Thanks to Nancy Shohet West for the source story in today's Boston Globe Sidekick magazine.

You can order her CD at CDBaby.com. I haven't heard the CD. I don't get any money for recommending this.

My military psychiatrist advocated for me: Treatment of mental illness

Ann Breitengross' story:
The military needs to arrive at a consensus concerning proper mental health care for troops. When I received a diagnosis of a mental illness in 2003 prior to an impending deployment, my military psychiatrist advocated for me. Despite my suggesting an alternative assignment to honor the terms of my contract, he recommended a medical discharge, giving me the opportunity to recover and develop the coping skills necessary to live a successful life. Not all military officers are so empathic. Had I been forced to deploy at that time, I know the stresses of being in a war zone would have exacerbated my symptoms, compromising the mission or, worse yet, my own life.

Advice to soldiers: Most people now know that tough soldiers can get mental illness without being crazy.


Read a story of a tough soldier who has overcome tough psychological issues.

Thanks to Ann for her letter to the editor of Time Magazine, published on June 30.

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.

An hour after being discharged from the Emergency Room: Conflict of interest on a potential malpractice suit

Dr. J.R.'s question:
I am a family physician. A patient I'd not seen in months passed away about an hour after being discharged from an emergency room. Her mother, also my patient, asked me to review the records and autopsy to see if she should bring a malpractice suit against the E.R. physician and the hospital. I am friends with the physician and on the hospital's board. Ought I comply with this request?


Ethicist Randy Cohen's answer:
You should not. Indeed, you cannot – not properly, not without risking charges of bias. Your attachment to your friend and your position on the hospital's board create – or may seem to create – divided loyalties. You should recuse yourself from this task, explain to the patient's mother why you are doing so and refer her to a disinterested physician with the expertise to review the records and advise her how best to proceed.

Update: J.R. met with the family but did not offer a medical opinion, explaining that the records provided insufficient information for him to do so. He said he believed that they would not be satisfied unless the matter were investigated further and so suggested they speak to a lawyer who would have a neutral expert review the case.


Advice to family members considering a lawsuit for a medical error: Consult a doctor or nurse who was not involved.


Thanks to Randy Cohen for the source article in the Ethicist column of the New York Times Magazine of May 25.