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.