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Tuesday, December 30, 2008

For more than two years: Genetic tests and personalized medicine

For more than two years, Jody Uslan had been taking the drug tamoxifen in hopes of preventing a recurrence of breast cancer. Then a new genetic test suggested that because of her genetic makeup, the drug wasn't doing her any good.

"I was devastated," she said. She stopped taking tamoxifen, and is now evaluating alternative treatments.

Experts say most drugs, whatever the disease, work for only about half the people who take them. For the others, their genetic makeup makes the drug ineffective, e.g., because the person may lack an enzyme to process the drug appropriately. The hope of "personalized medicine" is that doctors will be able to consider the likely effectiveness of a drug for a particular patient in light of that person’s relevant genes, in deciding which drug to prescribe.

Scientists are learning about a growing number of genetic markers that determine the likely effectiveness of particular drugs. Some genetic tests are available, many at a cost of several hundred dollars. The Food and Drug Administration has formally recommended genetic tests to guide the selection or use of some drugs, but has not yet made formal recommendations on many others.

Advice: To avoid the side effects, cost, and nuisance of using certain drugs unnecessarily, talk to a genetic counselor if you use Herceptin (trastuzumah), Erbitux (cetuximab), Vectibix (panitumumah), chemotherapy for breast cancer, Tamoxifen, Ziagen (abacavir), Camptosar (irinotecan), Tegretol (carbamazepine), Coumadin (warfarin), or Celebrex (celecoxib). Ask the counselor whether you should have a genetic test to determine the drug’s likely effectiveness for you.

Read another story about the value of genetic counseling.

Thanks to Andrew Pollack for the source article in today's New York Times.

Monday, December 29, 2008

TBI is what I'm supposed to be doing: A brain injury survivor

On March 11, 2002, a freak accident on an airport shuttle bus changed Peggi Robart's life in an instant. A piece of ceiling or sign – Peggi can't remember which – came loose, hitting her in the head and knocking her unconscious.

There was no gaping head wound, and no blood. But the next day, at work, it became apparent that she was not herself. She had been an educator, lecturer, and published author before the accident. But afterward she stuttered greatly simply in trying to finish a sentence. The familiar streets of Boston became confusing.

"I'd get in the shower and ask, 'What am I doing here?,'" she says. "You had to write everything down. I had to put the labels on all my cupboards. You go to the supermarket holding onto your list for dear life."

She started attending a support group run by the Brain Injury Association of Massachusetts, based in Westborough. Since then, she has become an activist. Many survivors report difficulties in finding providers who recognize and understand injuries like hers. So she has been reaching out to providers, by attending conferences and networking to let them know the full range of treatment options for people with traumatic brain injuries.

Peggi sees these efforts as instrumental in her healing. She says she is at peace with the fact that she will never be equal to her "before" self. Yet she has made significant improvement: she no longer stutters; she needs fewer PostIt notes to carry on her life, and it's easier for her to drive a car.

"Part of getting better is that I want to contribute, I like to help. Apparently, TBI is what I'm supposed to be doing."

Advice to people with severe injuries: Helping others with your condition might help you heal.

Read another story of a TBI survivor who is helping others.

Thanks to Megan McKee for the source article in yesterday's Boston Globe.

Sunday, December 28, 2008

Deemed to have the power of judgment: A difficult heart transplant decision

Hannah Jones, 13, is not afraid of dying — she is afraid of spending her remaining days in a hospital bed. In a case that raises a host of medical and ethical issues, the British teenager from a small town northwest of London has won a battle to refuse a heart transplant operation.

That decision by British medical authorities has ignited a debate over whether children should have the right to refuse potentially lifesaving medical treatments or if health authorities have an obligation to intervene.

Hannah, from Marden, 145 miles from London, was diagnosed with leukemia at age 4. Doctors later found a heart defect. In eight years, she has had chemotherapy and nearly a dozen operations.

"I've been in hospital too much — I've had too much trauma," she said.

Hannah's story surfaced when her parents complained about medical officials who threatened to force her into a hospital.

"They phoned us on a Friday evening and said that if we didn't take her in they'd come and take her. We still refused to take her," said her mother, Kirsty Jones.

A social worker was then sent to interview the teenager about her refusal to have a heart transplant to treat her cardiomyopathy, a serious disease where the heart muscle becomes swollen and sometimes fails. The social worker backed Hannah's decision.

Hospital officials said it is standard procedure to make sure both the child and the parents understand the consequences of any decision.

"Clearly the welfare of the child is paramount," said Dr. Sally Stucke, a pediatrician with the Herefordshire Primary Care Trust where Hannah was receiving treatment. "Pediatricians will always consider the child's best interests at all times and this would include the child's medical, emotional and psychological well-being."

"No one can be forced to have a heart transplant," she said.

In Britain, children younger than 16 aren't automatically considered legally competent to make decisions about their health care. Still, British courts have said that a child's decision can be valid if they have "sufficient understanding and intelligence to enable him or her to understand fully what is proposed."

According to the Department of Health, when a child is considered competent and refuses treatment, their decision will be respected. When a consensus can't be reached, the patient can be overruled by either parents or guardians, or in more unusual circumstances, by the courts.

Dr. Tony Calland, who chairs the British Medical Association's medical ethics committee, told BBC radio that a 13-year-old like Hannah, supported by her parents, should be "perfectly capable" of making such a decision.

"Decisions to refuse life-prolonging treatment are always extremely difficult and emotive," he said. "What is paramount is that decisions are made in the best interests of the patient."

Heart transplants are risky operations for any patient. Transplants often require patients to be on lifelong anti-rejection medication to prevent their body from attacking their new heart. The medicines sometimes have side-effects, which make the body more susceptible to dangerous infections.

"I just decided there were too many risks, and even if I took it there might be a bad outcome," Hannah said. "There is a chance that I may be OK, and there's a chance that I may not be as well as I could be, but I'm willing to take that chance."

In the United States, the issue of refusing treatment is generally decided on a case-by-case basis, said Dr. Jerrold Eichner, chair of the American Academy of Pediatrics committee on hospital care.

He said the ideal was when a child, their parents and their doctors agreed as to how to proceed. Disagreements can be handled by hospital ethics committees or, in extreme situations, by the courts — though Eichner said that was rare.

In Switzerland, anyone deemed to have the "power of judgment" can decide whether to receive treatment or not, and there is no formal minimum age. If parents contest their child's decision, then the minor can go before the state guardianship authority to ask for a ruling.

Michelle Salathe of the Swiss Academy of Medical Sciences said it was inconceivable that a doctor would force a child to undergo a heart transplant against the wishes of both the patient and the parents. In Austria, children under 14 are not allowed to refuse medical care, but 14- to 18-year-olds can. And under Greek law, parents have the final say on medical treatment until their child turns 18.

Advice to those advised to have major surgery: Look into it thoroughly, and make your decision with your family.

Read another story about a difficult surgical decision. Thanks to our source, Jennifer Quinn of the Associated Press.

Saturday, December 27, 2008

If that little girl in the picture can do it: Forgiveness after a severe wartime burn

Perhaps the most unforgettable Vietnam-era photograph shows a screaming, naked nine-year-old girl, afire and fleeing from a napalm attack. She is now a grown woman.

Kim Phuc's story of her long road to forgiveness:

On June 8, 1972, I ran out from Cao Dai temple in my village, Trang Bang, South Vietnam; I saw an airplane getting lower and then four bombs falling down. I saw fire everywhere around me. Then I saw the fire over my body, especially on my left arm. My clothes had been burned off by fire.

I was nine years old but I still remember my thoughts at that moment: I would be ugly and people would treat me in a different way. My picture was taken in that moment on Road No. 1 from Saigon to Phnom Penh. After a soldier gave me some drink and poured water over my body, I lost my consciousness.

Several days after, I realized that I was in the hospital, where I spent 14 months and had 17 operations.

It was a very difficult time for me when I went home from the hospital. Our house was destroyed; we lost everything and we just survived day by day.

Although I suffered from pain, itching and headaches all the time, the long hospital stay made me dream to become a doctor. But my studies were cut short by the local government. They wanted me as a symbol of the state. I could not go to school anymore.
The anger inside me was like a hatred as high as a mountain. I hated my life. I hated all people who were normal because I was not normal. I really wanted to die many times.

I spent my daytime in the library to read a lot of religious books to find a purpose for my life. One of the books that I read was the Holy Bible.

In Christmas 1982, I accepted Jesus Christ as my personal savior. It was an amazing turning point in my life. God helped me to learn to forgive — the most difficult of all lessons. It didn't happen in a day and it wasn't easy. But I finally got it.
Forgiveness made me free from hatred. I still have many scars on my body and severe pain most days but my heart is cleansed.

Napalm is very powerful but faith, forgiveness and love are much more powerful. We would not have war at all if everyone could learn how to live with true love, hope and forgiveness.

If that little girl in the picture can do it, ask yourself: Can you?

Kim Phuc has started a foundation, Kim Foundation International, which aids children who are war victims. She is a patient advocate hero.

Advice: Live like Kim Phuc.

Read a story about the ways faith and prayer help healing.

Thanks to Anne Penman of the Canadian Broadcasting Corporation for the source story, rebroadcast today on National Public Radio.

Friday, December 26, 2008

He was more concerned about my health: Elective breast surgery

Knowing that her mother had had breast cancer at 49, Kerry Herman of Brooklyn, New York had her first mammogram at 38, just before her first full-term pregnancy. She was told her breasts were cystic and very dense but otherwise healthy. When she stopped nursing her daughter, she had a second mammogram, at 41, and then annually after that.

She was in her early 50s when the mammograms started to show calcifications. By then sonograms were readily available to supplement her breast exams. At age 55 her mammograms revealed a different pattern of calcifications in her left breast. Though the radiologist and surgeon told her they did not think this was worrisome, a biopsy was recommended and done in three locations. It revealed very early cancer called ductal carcinoma in situ, or D.C.I.S.

Faced with removal of her left breast and biopsies of the right, she said in an interview, "I decided to be more proactive. After consulting my husband, who said he was more concerned about my health than my breasts, I had a bilateral mastectomy and reconstruction."

"I have never regretted my decision [about the elective surgery], she said. "For me, having to go through this every year and wondering if I would beat the Grim Reaper was agony."

A friend of hers with the same findings chose to wait and see, Kerry said. She ended up with an invasive cancer that had spread beyond the breast by the time of her next exam.

Advice to people with a friend at risk of breast cancer:
Help her consider all the options, and be supportive of her tough choice.

Read about another woman's very difficult decision on elective surgery

Thanks to Jane Brody for the source article in the New York Times of Oct. 21.

Wednesday, December 24, 2008

They regarded me as a rare pelt: Prostate cancer treatment

Dana Jennings's story:
I have prostate cancer, but it sometimes seems as if…the cold intent of many people was to translate me into an abstraction, to deny my damaged and tiresome flesh-and-bloodness.

My insurer did not want to hear that my radical open prostatectomy last July would demand a higher level of care because previous abdominal surgery had created a tortuous internal topography of scar tissue and adhesions. My insurer, despite the insight and strong protests of my doctors, kept insisting that any knife would do. Was Sweeney Todd available?

And some doctors I spoke with before my surgery – not my current team at the Cancer Institute of New Jersey – seemed to regard me as a rare pelt, a fascinating wrinkle in their volume business in prostates.

Cancer is a crucible in which we patients are somehow, we hope, reborn. It's a rite of passage as resonant as any other – a graduation, a baptism, a wedding – and should be treated that way. Some days, maybe because I'm still undergoing treatment, I don't want to hear about another stat, another study, another hare-brained cure. How about a smile, a kind word, and a hug?

The bewilderment, shame and fear often stun men into a passive and depressed silence. Nurses and doctors say that many men barely speak during treatment and office visits, letting their wives, partners or children do the talking. They are quiet waiting room wraiths, perfecting their thousand-yard stares. And if they speak, it's in murmurs, as if cancer required whispers. No one scratches you behind the ears and says "Good boy" for being mute.

Because I had surgery at a teaching hospital, I woke up each morning to the rustle and jostle of a gang of residents. Young crows with bright and clever eyes, they flapped into my room – almost like Keystone Kops in white coats – to take a poke at the old crow.

I don't want to be too tough on them, because they're only kids, and they have so much to learn in such a short time. But to most of them, I suspect, I was just a case, one of each morning's many medical exhibits.

I preferred the humane, morphine-woozy middle-of-the-night conversations with the aides who took care of me. The guy who talked about superhero movies after checking out the Iron Man figurine my sons had given me. And the guy who, as he gently drained my ileostomy pouch – not related to my cancer – told me how he'd had to wear a temporary pouch after he'd been shot when he was young and stupid.

Dana's Advice: To keep from being reduced to a cipher, a mere "case," you need to be conscious and verbal. As a patient, when you don't speak, when you try to take on the cool and detached manner of a doctor, all you become is "meat," quiet meat.

Read a story about compassionate doctors.

Thanks to Dana Jennings for his source article in the December 16 issue of the New York Times.

Sunday, December 21, 2008

He's now a normal little boy: Cord blood donation

Happy Chanukah to our Jewish friends – tonight is the first night of the holiday. Jews celebrate the miracle in which a small amount of oil burned for eight full days, long enough to illuminate their temple restoration work.

Today's blog post tells of the vastly disproportionate restorative effect of a small amount of a very different fluid – a modern miracle. And it even gives you a holiday gift suggestion; read on.

Jack’s story:

Jack was born a healthy little boy but at around six months old he developed a simple cold. During the day he appeared to have recovered from his cold but at night he couldn't seem to shake off a persistent cough. Jack was admitted to hospital where blood tests revealed he was suffering from Severe Combined Immunodeficiency (SCID). SCID is a rare, inherited disorder causing a severe abnormality of the immune system, making it difficult for the body to fight infections. It can be fatal if left untreated.

Upon diagnosis, Jack was transferred immediately to the intensive care unit at Great Ormond Street Hospital in London, where they began the search for a stem cell transplant – Jack's only chance of survival. A perfect match to Jack's tissue type was found with a cord blood donor and on November 7th 2003, Jack received his life-saving cord blood transplant.

Steve and Ruth, Jack’s parents, said, "Looking at Jack now, you'd never know he'd once been so ill. He's now a normal little boy who goes to playgroup and plays with his toys. The cord blood donor gave us the chance of life for Jack and we will be forever grateful."

Ken's advice for an inexpensive, meaningful and readily available last-minute holiday gift: If you're having a baby, donate his or her umbilical cord blood. If you're not, call the Red Cross at 1-800-GIVE-LIFE (1-800-448-3543) to schedule a blood donation by you and your family.

Read a story about a man who survived with the help of numerous blood transfusions.

Thanks to the British National Health Service Cord Blood Bank for the source story on their web site.

Saturday, December 20, 2008

The humble pinkie has earned my respect: Finger surgery & finger therapy

Dana Scarton's story:
Last April, I tripped while jogging and my 132-pound frame crashed onto the bone at the base of my right pinkie, a bone the width of a pencil. It snapped in the metacarpophalangeal, or MCP, joint, where the finger links with the hand.

Five months later, my finger would not bend unassisted. I could not make a fist, swing a tennis racket with control, or securely grasp a dumbbell or the handle of a vacuum cleaner. Because the injury occurred in my dominant hand, writing was cumbersome.

Repairs to a broken small finger can involve pins, srews, and plates. Eight days after my fall, two pins were inserted through the MCP joint during outpatient surgery, then a cast was applied from fingertips to elbow.

Twelve days later, the cast was removed and physical rehabilitation began. I had never heard of finger therapy, but it exists, and it's painful.

Treatments include heat, ultrasound, neuromuscular stimulation, splinting, and manual exercise.

I got therapy quickly but was assigned a therapist who was too timid to manipulate my finger. By the time I located a competent replacement, my finger was rigid, and scarring appeared to be well underway. My finger was stuck.

In October, I underwent flexor tenolysis, in which the surgeon meticulously freed the tendons. The day after the surgery, I started physical therapy. Earlier this month, I completed the treatment, and my finger now bends with ease and my hand strength has returned.

And the humble pinkie has earned my respect.

Dana's advice: It's of paramount importance to begin physical therapy promptly after surgery, if needed, to prevent scar tissue from proliferating and stiffening the joint.

Read a story about the value of good physical therapy.

Thanks to Dana Scarton for the source article in the Dec. 16 issue of the New York Times.

Monday, December 15, 2008

But I am living in a new world: Accepting multiple sclerosis

Ruth Just's story:
I have had multiple sclerosis (MS) for 35 years. I have lost one ability after the other. I am now completely dependent on the care of other people.

Over the years I have learned that although I can't choose not to have it, I can choose my attitude about living with the disease.

The first thing I must do is accept MS. I must accept it not just once but over and over again. Whenever anger, grief and envy rise in me – when I see what other people can do and what other people have – I must remember that I have decided to accept MS.

When my whole family goes to Germany and I have to stay home, I must remember my decision to accept MS. Every time I have to spend several months in bed healing a pressure wound and think what fun it would be to go on a bike ride with my sisters, I must remember my decision to accept MS.

I struggle and I groan under the weight of this responsibility. But I am living in a new world. New opportunities abound. And I'm amazed to find that I feel very thankful for this new world.

MS has created a special bond between my husband and me. He has stayed with me and offered me his love and support through all these years. Would I have seen the fine mettle of this man were it not for MS?

Many of the people who take care of me are new immigrants from African countries. Getting to know these people has been the most enriching experience of my life. They are part of my new world. We encourage each other, and our friendships are rich.

My diminishment has also made me a member of the MS community. The many fine people I have met inspire me with their courage. We share each others' joys and sorrows. I need these people and they need me.

Advice to people with such diminishments from a chronic illness: Read the book that has guided Ruth: On Hallowing One's Diminishments, by John Yungblut.

Read another multiple sclerosis story.

Thanks to Ruth Just for her source article in the November/December issue of Neurology Now.

Friday, December 12, 2008

Like a genie liberated from a bottle: A stroke of luck

Here is an excerpt from an interview of Jill Taylor by Mark Matousek:

In her best-selling memoir, My Stroke of Insight, Harvard-trained brain researcher Jill Bolte Taylor, age 49, tells of the rare form of stroke she suffered in 1996. It shut down the left hemisphere of her brain, where language, logic and linear thought are based. For months she was unable to walk, talk, read, write, or recall the events of her life. Remarkably, this shut-down, and the silencing of mental chatter, left her in a state of bliss. After eight grueling years of rehab, she regained full brain function, yet could still access, at will, what she describes as a state of complete peace and well-being.

Q. Can a person tap into this bliss without suffering a stroke?
A. Absolutely! When you're really paying attention to the richness of the present moment, that's right-minded awareness. The left hemisphere is preoccupied with past and future, projecting fears, contemplating ideas that aren't relevant to the here and now. Once you realize you have these two different brains, you can learn to choose, moment by moment, how you want to live. Of course, you do need the push as well as the pause to function properly.

Q. The "push as well as the pause"?
A. I use the tools of the left hemisphere to push into the world, but as soon as it becomes stressful, I can feel that in my body, and I switch to the right hemisphere to pause. I may prefer the pause because it feels better. I'm more joyful, cooperative. People like me better. As I recovered my skills, I consciously chose not to let that left-brain circuitry dominate again. Stress is a frame of mind. If I'm in traffic and there's no solution in sight, I relax and enjoy the few moments I have. Standing in line at the store, I observe rather than engage. You can say, 'If I pull the plug on this circuit, I don't have to think [stressful] thoughts anymore.'

I feel like a genie liberated from a bottle.

Indeed, the long-haired blond medical school professor looks the part of a genie….

Advice: Prof. Taylor has used her disease to cultivate a higher form of consciousness. She teaches others about this in her courses, and by writing a book. That makes her a patient safety hero. Learn from her example.

Read another stroke survivor’s story.

Thanks to Mark Matousek for the source story in the November/December 2008 issue of AARP magazine.

Thursday, December 11, 2008

If David could speak from his grave: Regulations on drug companies' gifts to doctors

David Olson's story appeared here more than a year ago.

Officials in the Massachusetts Department of Public Health are now writing regulations about the disclosure of gifts that doctors get, e.g., from drug companies, according to an article by Liz Kowalczyk in the Boston Globe of Dec. 6.

If David could speak from his grave, he might want his voice heard loud and clear on this. A drug company was paying David's psychiatrist thousands of dollars for participating in a drug study. After David's death, the state medical board criticized the doctor, concluding that he had "failed to appreciate the risks of taking Patient 46 off Clozaril, failed to respond appropriately to the patient's rapid deterioration and virtually ignored the patient's suicidality." It's hard to avoid concluding that the payment of thousands of dollars for recruiting each of a number of patients into the drug trial had affected the doctor's judgment.

Worse, this was no "bad apple." The doctor was the president of the Minnesota's psychiatric society.

Officials in Massachusetts are now considering whether doctors must disclose payments for research and research-related activities. Note that, whatever they decide, doctors will be free to receive these payments. The issue at stake is only whether patients will be able to find out about it.

Advice: Work to ensure that doctors disclose the sources of their money.

Read a story about a different conflict of interest by a doctor.

Wednesday, December 10, 2008

She was pregnant when her insurance ran out: The 60th Anniversary of the United Nations' Universal Declaration of Human Rights

Her father had worked in the Archway cookie factory in northern Ohio for 24 years. Starla Darling, a 27-year-old mother of a young boy, had worked there for eight years. Archway provided excellent health benefits for her through Blue Cross Blue Shield. Starla became pregnant again. Several months later, on Oct. 3, she and the other factory employees received a letter from the owners of the company – an equity firm in Greenwich, Connecticut: the factory would close; their jobs were being eliminated; and insurance benefits would expire on Oct. 6.

"When I heard that I was losing my insurance," Starla said, "I was scared. I remember that the bill for my son [Colt]'s delivery in 2005 was about $9,000, and I knew I would never be able to pay that by myself." So she asked her midwife to induce her labor two days before the insurance expired. "I was determined that we were getting this baby [Kathryn] out, and it was going to be paid for." Starla rushed to the hospital, took a medication to induce labor and then had an emergency Caesarean section.

The insurer denied her claim, leaving her with more than $17,000 in medical bills.

Many people in Starla's situation can maintain their health benefits through a provision in COBRA (the Consolidated Omnibus Budget Reconciliation Act of 1986). Unfortunately, because the Archway employees' group health plan no longer exists, that is not an available option for her. In effect, the COBRA section of the safety net has a hole that the 275 factory workers fell through.

Starla's story is especially poignant because today is the anniversary of the UN's Universal Declaration of Human Rights, which draws from the US Constitution, and particularly from the Bill of Rights. Article 25 states:

"Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control. Motherhood and childhood are entitled to special care and assistance."

Advice to citizens: Fight to get access to affordable care – a universal human right - for people like Starla, Colt, and Kathryn.

Read another story of unaffordable care.

Thanks to Robert Pear for the source story in the Dec. 7 issue of the New York Times.

Tuesday, December 9, 2008

George Morrison: A fatal patient fall

George Morrison died on Nov. 17 from a fall in the hospital at age 89. He had been the US Navy commander of the fleet during the Tonkin Gulf incident that led to the escalation of the Vietnam War. He is the father of the late Jim Morrison, the lead singer of the Doors.

Advice to people with an elderly family member in the hospital: Ask the nurse if your family member is at risk of falling, and what can be done to prevent a fall in the hospital. Hospitals often have protocols to reduce the chance of a fall for at-risk patients. The drugs that many elderly people take sometimes have dizziness as a side-effect.

Read a story of successful fall prevention.

Thanks to William Grimes for the source story in today's New York Times.

Sunday, December 7, 2008

For the long and painful process of being angels: Gratitude for family caregivers

As a 75-year-old mother living alone in Boca Raton, Florida, and with my son, a computer research scientist, living in Olympia, Washington, I found it eye-opening to read "More Men Take the Lead Role in Caring for Elderly Parents" [in the New York Times].

Although I am physically fit with no major medical problems, the time will come when I need help.

But men caring for their elderly parents does not necessarily begin when debilitation sets in. My son has been my sole financial caregiver, when I have needed it, for more than 15 years, and if and when I have physical needs, I would guess he'd be there for me then also.

But it was only after reading Peter Nicholson’s perspective in the article that I realized what my son may go through: "As a teacher, he could measure his contribution by the students' progress. But with his mother, he can only watch her decline." And, "there is the lingering sense that whatever they do is not enough."

Perhaps mothers and fathers, before they grow into senility, should write a letter to their prospective caregiver, son or daughter, expressing gratitude for whatever decisions and actions they may, or may not, in the future, take in their long and painful process of being angels.

A thank-you letter in advance might ease the torment of one's beloved offspring.

-Malka Kornblatt

Read a story about tough love by a family caregiver.

Thanks to Malka for the source, the letter she wrote to the New York Times editor, published today.

Tuesday, December 2, 2008

The calming presence in the middle of a storm: A breast cancer patient navigator

Chris Ross is a 52 year old tutor from St. Andrews, New Brunswick, Canada who found a lump in her breast; she then had a biopsy that confirmed cancer. "I remember my first meeting with Wendy [Cyr]," says Ross. "My family physician had referred me to the breast clinic at St. Joseph's Hospital and I met with Wendy and my surgeon. There was a lot of information to take in, but Wendy had prepared a complete package explaining everything I was about to go through. I knew immediately that she was going to help me get through things; that she would be a terrific support. She has a way about her, and I just knew."

"Wendy has literally been there for me every single time I've reached out to her," says Chris. "And there was a lot of reaching out! Wendy really personalizes her approach. She helped lessen my worries and understand what to expect. I think she has a tough job – but she just knows how to interact with people, how to reach people."

Wendy can connect newly diagnosed breast cancer patients with a variety of people and resources they might need. "Dealing with a breast cancer diagnosis is complex,” she explains. "Every patient is different; some need financial assistance, some need couples counselling, others have transportation issues or need prosthetics or wigs. There are so many things, outside of their treatment, that can present as they navigate through treatment and recovery. I try to act as a consistent presence. I want our patients to know that if they call me, I will be there to assist them in whatever way I can, and I will arrange contact with the appropriate people."

Chris has completed her treatments and is cancer-free, but she is still in regular contact with Wendy. "I just love knowing that she’s there. Not a day goes by when I don't wake up and think about cancer. But Wendy keeps a close eye on me; if I call her she's right there for me to do whatever she can."

Advice to women with breast cancer: Find a navigator like Wendy.

Read another patient navigator story.

Thanks to Erin Barnes of Atlantic Health Sciences Corporation for the source story in the December issue of Hospital News.

Monday, December 1, 2008

His nine patients already were seated: Shared medical appointments

When Dr. Eugene Lindsay arrived to see his 4:30 appointment on a recent Thursday, his nine patients already were seated on folding chairs arranged in a semicircle around a table of snacks. For the next 90 minutes, he examined them, one by one, discussing their personal medical details out loud.

Dr. Lindsay, a cardiologist and CEO of Harvard Vanguard Medical Associates, now sees patients only in such groups, called "shared medical appointments."

"It was fabulous," said Nicholas Poly, an 80-year-old retired engineer. "I have problems similar to what other people have. I get to hear their questions too, and that's good."

Walter Kelly, on the other hand, attended two group visits, and then said he would rather see Dr. Lindsay individually if that were an option. Walter, age 89, had begun seeing Dr. Lindsay five years ago, after he got a pacemaker for his heart murmur.

The groups attempt to increase the satisfaction of patients and doctors by allowing more time in the visit, at the expense of privacy and modesty.

For the group appointment to work, additional staff and privacy and confidentiality policies are needed. A medical assistant takes vital signs and gives immunizations privately, in a nearby room. A nurse wrote patients' questions on a white board in the conference room used for the visit. Patients can talk to the doctor privately if they have questions they don't want discussed publicly, e.g., about sexual problems.

My hunch is that, as in group therapy in the behavioral health world, much of the clinical success of a group depends on the similarity of patients in the group.

Advice to people with delayed individual medical appointments: Ask your doctor about shared medical appointments.

Read a very different group visit story.

Thanks to Liz Kowalczyk for the source story in yesterday's Boston Globe.

Sunday, November 30, 2008

When she had a second check: Kylie Minogue's breast cancer misdiagnosis

The Australian pop star Kylie Minogue appeared as a guest a few months ago on comedienne Ellen DeGeneres' TV talk show. She had just heard Ellen and her earlier guest, Senator Hillary Clinton, discuss the importance of the early detection of breast cancer. Ellen asked Kylie about her bout with breast cancer two years before.

"Listen, this is an opportunity for me to say something that I have not said before," Kylie said.
"I was misdiagnosed initially. So my message to all of you and everyone at home is, because someone is in a white coat and using big medical instruments doesn't necessarily mean they are right."

The misdiagnosis had happened before she embarked on her Showgirl concert tour. Later, when she had a second check, it was discovered she had breast cancer. She is now in remission.
Ellen DeGeneres also told the audience she had a mammogram and was given the all clear, but then "a couple of weeks later" she found a lump in her breast and had it removed.

Kylie Minogue's advice to women tested for breast cancer: "If you have any doubt, go back again."

Read a story of delayed detection of breast cancer.

The source article appeared in the Sydney Morning Herald of April 8, 2008.

Saturday, November 29, 2008

A curmudgeon with a purpose: An activist disease foundation fighting Parkinson's Disease

He had long been the chief executive officer of Intel Corporation. Now Andrew Grove, 71, has Parkinson's Disease. So seven years ago, he launched the Grove Foundation, to combat Parkinson's. He also plays an ad hoc advisory role to the Michael J. Fox Foundation, to which he has donated $40 million. The creation of these two foundations in 2000 marked the beginning of targeted Parkinson's research.

At the time, Andrew thought that stem cell research would lead to a cure. By financing such research, which the government had decided not to do, he hoped to speed the cure.

While he is dissatisfied with progress to date, he realizes this approach has some unexpected results: "The most important thing we have figured out is the various things we didn't know and should have known."

As Joseph Nocera notes, "You have to be doing targeted research even to discover what you need to discover."

Andrew sees his role as being a curmudgeon with a purpose, whose job it is to push and prod and not let anyone become satisfied with the progress they have made.

His foundation is an activist disease foundation that is impatient with the pace of research and is using its money to stimulate researchers to advance in new ways.

Advice to those concerned about Parkinson's: Consider donating to an activist disease foundation.

Read a story about a similar effort against multiple sclerosis.

Thanks to Joseph Nocera for the source article in the New York Times of November 11.

Thursday, November 27, 2008

They strongly suggested we keep her in the hospital: Decisions at the end of life

When 32-year-old Rosaria Vandenberg lay unconscious in the hospital, a malignant brain tumor stealing her life, her brother decided to overrule her doctors' advice and bring her home to die. He believed, but he wasn't sure, that this was what she would have wanted. The truth is, when she was conscious, her family had never asked.

Back at home, Rosaria's two-year-old daughter, who had been afraid to touch her mother in the hospital, snuggled next to her in bed. Rosaria opened her eyes, the first time in a week, and took in the sight. She died the next night at home.

Her death made her sister-in-law, Alexandra Drane, realize that she had not thought about the kind of healthcare she would want at the end of life, much less discussed it with her family.

Such a conversation would have guided the family in the final days of Rosario's life. "When the end was near, the doctors pulled us aside and advised us of the options available. They strongly suggested we keep her in the hospital to make sure she would be well cared for – worrying that her case was so complex, there was no way we could care for her at home."

But her family could not get comfortable with the idea of Rosaria dying away from home and the daughter she so loved. In the end, the connection made between Rosaria and Alessia in the final hours was more than enough to convince the family that they had made the right decision.

Alexandra Drane wanted others to know that, so she launched Engage with Grace. Her website poses five questions for family members, e.g., "Could a loved one correctly describe how you'd like to be treated in the case of a terminal illness?"

Advice: Have the tough conversation with your family. It might help to show this to them to start the conversation.

Read another story about the decision at the end of life.

Thanks to Kay Lazar for the source article in yesterday's Boston Globe.

Tuesday, November 25, 2008

Eric has been reading a lot: Medical schoolitis and cyberchondria

Eric Horvitz is an artificial intelligence researcher at Microsoft Research. He remembers, years ago, while in medical school, "sitting on a cold seat with my legs dangling off the examination table," convinced that he was suffering from a rare and incurable skin disease. While the doctor was out of the room, Eric took a look at his medical chart and saw that the doctor's note read, "Eric is in medical school and he has been reading a lot."

In medical school, the common "diagnosis" by medical students of very rare conditions is called "second year syndrome" or "medical schoolitis." Medical students, according to the well-known joke, often jump to the conclusion that hoofbeats and whinnies are the signs of a zebra rather than a horse. Patients often make the same mistake, fearing they have a rare and dread disease when, much more often than not, they have a less serious condition.

On the Internet, the large number of stories on any topic often indicate to the lay reader a very wide variety of diagnoses, and many patients latch onto the most serious, even if very rare, condition. "Cyberchondria" is the name of this new malady.

Advice to those searching the Web for medical information: Take it with a grain of salt.

Read a story of a misdiagnosis of a harmless condition.

Thanks to John Markoff for the source story in today's New York Times.

Sunday, November 23, 2008

Thousands of patients won't take it: Online drug studies using PatientsLikeMe

Karen Felzer's father has ALS (amytotrophic lateral sclerosis), or Lou Gehrig's Disease, so she read with special interest an article about the results of a new drug. Italian researchers had published a small study in February saying that lithium, a drug used to treat bipolar disorder, seemed to slow the progress of ALS.

A scientist herself – she's a seismologist - Karen helped to launch an online study by patients of the effects of the drug. Participating patients use the web site PatientsLikeMe.com. Karen says, "We want to keep track of how people are doing on [lithium]. It's important for the whole community."

Lithium didn't seem to help her father, and he experienced some side effects, so he stopped taking the drug. That is consistent with the reports of other patients, which indicate that lithium seems much less effective than reported in the Italian study in the Proceedings of the National Academy of Sciences.

As a result, says James Heywood, the co-founder of PatientsLikeMe, less than a year after the Italian study was published, "we now have data on over 100 patients who have been on a drug long enough to demonstrate the hope of that drug was not what was originally assumed – and that means thousands of patients won't take it."

Advice to patients interested in clinical drug trials: Look into PatientsLikeMe.

Read another ALS story.

Thanks to Carolyn Johnson for the source article in the Nov. 17 issue of the Boston Globe.

Saturday, November 22, 2008

He was later convicted of murder: Mercy killing with the help of Dr. Kevorkian

Ten years ago today, the CBS News program "60 Minutes" aired a videotape of Dr. Jack Kevorkian, an advocate of assisted suicide, administering lethal drugs to Thomas Youk, a terminally ill patient. Dr. Kevorkian was later convicted of second-degree murder. He was released in 2007 after serving eight years in prison.

Advice: Write a living will to clarify your wishes to give your family, and you, peace of mind in a health crisis.

Read a related story.

Friday, November 21, 2008

They walk the talk all the way to Japan: The healthiest response to a fatal medical error

I was privileged to hear a talk today by Dr. Gary Kaplan, the CEO of Virginia Mason Medical Center in Seattle. He described their long quality journey in using the Toyota system of lean production.

He spoke of a preventable death of a patient in 2004, and what the medical center has done to systematically prevent medical errors.

Mary L. McClinton had moved from Alaska to the Seattle area in 1996. She had dedicated her life to helping others, her family said. She was even adopted by the Tlingit tribe for her work as a vocational coordinator. She worked at the Greater Trinity Missionary Baptist Church in Everett, Washington, helping to find jobs for people with physical and mental disabilities.

Mary went to the hospital in 2004 for an eye procedure, and as she was sitting in a waiting room, a large picture, about 6 feet square, fell onto her head, and "knocked her silly," her son Gerald said. In the days afterward she felt dizzy, so he took her to an Everett hospital where a brain scan revealed a swelling in a blood vessel in her brain - an aneurysm.

Later, she came to Virginia Mason Medical Center for treatment for the aneurysm. The hospital had recently switched from a brown iodine-based liquid to a clear antiseptic for cleansing a patient's skin before and after procedures. During the procedure to treat the aneurysm, hospital staff would inject a clear marker dye into the patient's blood vessels to make them visible on X-rays. "At some time during the procedure, the clear antiseptic solution was placed in an unlabelled cup identical to that used to hold the marker dye," according to a hospital memo tracing the root causes of the error. The antiseptic, rather than the dye, was then mistakenly injected into a main artery that carried blood to Mary's leg.

The antiseptic solution was highly toxic when injected into a blood vessel: it blocked the flow of blood to her muscles, causing the leg to swell; her blood pressure dropped, her kidneys failed, and she suffered a stroke. She died soon afterward, in November 2004.

The hospital promptly took the unusual step of publicly explaining, and apologizing for, the error. The only way to improve patient safety, Dr. Kaplan said at the time, is to be "open and honest about our errors. ... You can't understand something you hide."

Since the error, the liquid antiseptic has been removed from the hospital and replaced with a swab on a stick. It's now impossible to mistake the clear liquid dye for the swab. This is an example of pokayoke – a safeguard that makes an error impossible.

Most of us try to suppress the memory of a big error. It's to the credit of Dr. Kaplan and his management team that they instead tried to use this awful error to stimulate their continued improvement. Indeed, the hospital has developed the Mary L. McClintock Award, and has made awards annually since 2006, to teams that have significantly improved safety in the Critical Care unit, the IV [Intravenous] Unit, and the Stroke Center, in the last three years.

Dr. Kaplan mentioned Mary in his talk this morning, but, appropriately, did not make her the centerpiece of his talk. The hospital's quality journey started before the error that killed Mary, and is far more system-wide than even the clinical functions that ripple around her care. Board members are now expected to join the CEO on trips to Japan to continue learning how to improve quality, using Toyota’s methods. Each Board meeting begins with a story by a patient or family member about an error. Staff on various teams have now participated in 500 intensive five-day sessions to redesign specific elements of the hospital's care.

Virginia Mason used several of the same elements that CareGroup (then a six-hospital system in eastern Massachusetts) did in its multi-year quality attempt to become the safest hospital to get medication in the world: The CEO very publicly led a high-profile multi-year broad project. Clinicians regularly discussed errors to learn from them. And well-grounded, proven change concepts provided the basis of the transformation.

Advice to people needing hospital treatment: Find a hospital that learns from its errors rather than hiding from them.

Read about another look-alike error.

Thanks to Nick Perry and Carol Ostrom for the source story in the Seattle Times of Nov. 25, 2004.

Thursday, November 20, 2008

Medical Mishaps that Cause Misery: IVF and an ectopic pregnancy

There are times when we labor under false impressions – which medicines always help find a cure and that doctors always know what's good for us. A close friend helped me see these truths through two unpleasant incidents in her life - while one was a blatant betrayal of trust, the other was an oversight that nearly killed her.

The desire to have a baby is a normal and innate craving for most women, and my friend Jean was no different. Having not been able to conceive for a couple of years though, she and her husband sought the services of a fertility clinic. To cut a long story short, let me just say that after five years of failed artificial inseminations, they decided to try their luck at an IVF (in vitro fertilization) clinic – where they found to their dismay that Jean had just one Fallopian tube. The doctor at their previous clinic had removed it on the pretext of a cyst and FAILED to inform them that she had just one tube that worked.

Deciding not to sue them, (money was running low what with all the expenses for the medications and clinic visits) Jean continued with her IVF treatment – and tasted success. Well, for a short while at least. She was admitted to the clinic when she started bleeding, and had to hear the horrible news that there was no heartbeat and that she would have to undergo a D & C procedure.

Taking the news it stoically, the couple came home to recuperate and rejuvenate themselves, but Jean was unable to get out of bed for the next two days. She kept throwing up and undergoing dizzy spells. And then the abdominal pains came with a vengeance – she would literally pass out from the pain which usually lasted for a few minutes. A close family friend suggested a scan, which revealed the presence of another fetus in the Fallopian tube, which had now burst.

A classic ectopic pregnancy syndrome, and the doctor had failed to notice it. Jean was rushed into emergency surgery; she had already lost a lot of blood, but the docs somehow made her pull through. The worst part of the whole ordeal was that she lost her one good Fallopian tube because of this costly error. Jean and her husband have decided to adopt now, and are content to put these incidents behind them, and wait for their ready-made child. But the rest of us can learn from medical mishaps like these, and ensure that we are not at the receiving end. Here's what we can do:

• Always seek a second opinion: Doctors are human, just like the rest of us. So seek a second opinion from a different source before you decide to take any long-term medication or go under the surgeon’s scalpel.
• Consult a family member or other trusted person who's a doctor or paramedic: Members of the family who are doctors or who work in the medical field are your best bet to check out the efficiency of your attending physician and to tell you if there are others who are better at their job.
• Learn from others' mistakes: Pay heed to the stories of people who have been at the wrong end of the medical field and are suffering as a result. Learn from their experience so that you don't have to sail in the same boat.

This article is contributed by Sarah Scrafford, who regularly writes on the topic of EKG classes. She invites your questions, comments and freelancing job inquiries at her email address: sarah.scrafford25@gmail.com

Read a very different fertility treatment story.

Wednesday, November 19, 2008

With no sarcasm at all: Medication compliance and tough love with Lewy Body

Blogger KnittingDoc’s story:
This week I had three very good days in a row. So good that I overblogged on those days. Pam even said, “You’re spending a lot of time on the computer. Why don’t you take a break?” I felt well. So well that on this past Wednesday evening I began to ponder whether I really needed to take all these ‘memory pills.’ ‘Dementia pills.’ Nothing wrong with me. I don’t think I need to take them. I could go to work again. On those days you feel poorly, kick yourself a good one and get going. It’s all in your head (oops, excuse the pun).

So I mentioned it to Pam. A good mistake, I guess. Talking about tough love! The earth shook. The dogs barked. And the wind blew. I ended up stammering, “Yes, yes. I’ll take them and no, I didn’t stop taking them. I swear to God with both hands on the Bible.” Caregivers……..tough love does work! My red face grin.

Later that evening, Chad said goodnight to which I responded, “I hope you don’t die tonight.” In my heart, I was trying and meaning to say, “OK. You have a good night and sleep well.” I walked into the bedroom. Again the earth shook. Pam told me how inappropriate my comment to Chad was. I wasn’t sure what she was talking about.

Evidence of lacking good judgment twice within hours of each other. Before going to bed, she said, “You really did stop your medicine, didn’t you?” I had to convince her that I didn’t. Whether it was poor judgment, word or phrase finding difficulty or just plain not thinking, it wasn’t the real David. Pam reminded me of my past couple of years and the symptoms I’ve shown. She reminded me of my abnormal SPECT scan.

And then the next morning — Thursday. I awakened having slept poorly. I was in a fog and feeling fuzzy. My gait was a little stiff and slow. Good morning, Lewy Body Dementia. I see you’re back. Reality smacked me in the face! With no sarcasm at all, Pam said, “Do you still want to go off the Namenda and Aricept?” I had no retort……..


Advice to spouses and people with Lewy Body Dementia: Be gentle with each other – and use tough love as indicated.

Read another story about a physician suffering from Lewy Body Dementia.

Thanks to Dr. David Thomas for his insight, openness and humor in the source story in his blog post, “Swallow This! Bittersweet Memory Pills.”

Monday, November 17, 2008

I recharged my purpose batteries: Purpose and long life

For 77 years, Marge Jetton, a nurse, had identified herself proudly as a doctor's wife, and found meaning in the work she did to support her husband. Their partnership was magical, she says, but ended abruptly when he died suddenly.

She grieved for months, and then she regrouped. She began volunteering again at her church, worked as a fundraiser for a gospel radio program, and delivered used magazines to elderly hospital patients. "I realized the world wasn't going to come to me, so I went back out into the world," she says. "I reconnected with old friends and felt satisfaction from helping the community. I guess you could say that I recharged my purpose batteries."

That was five years ago. Today, at age 104, she says she owes her can-do vitality to her religious faith and her fervent belief that as long as she's around, she can make a difference.

Advice to widows: You can live fully, and productively, even after your long love has passed away. As Dan Buettner says, Add years to your life by adding life to your years.

Read a very different story of finding a new purpose in life.

Thanks to Dan Buettner for the source story in the November/December issue of AARP magazine.

Thursday, November 13, 2008

One fifth of her income: Medication compliance for Alzheimer's medication

Lori Stewart of Champaign, Illinois, is trying to decide whether to discontinue her 66-year-old mother’s Alzheimer's medications, which seem to have only marginal benefit.

"The medication is $182 a month," she said. Lori recently wrote about the dilemma on her blog. "It's been a very agonizing decision for me. It is literally one-fifth of her income."

Advice: Ask your doctor, or your parent’s doctor, about your options in light of the heavy cost of drugs.

Read another story on the effects of the high costs of healthcare.

Thanks to Stephanie Saul for the source article in the NY Times of Oct. 22.

Tuesday, November 11, 2008

To care for him who shall have borne the battle: Ongoing care for veterans

In a small room at the San Francisco Veterans Administration Medical Center on Monday, a dozen old soldiers sat in wheelchairs to one side of the podium.

Michael O'Neal pushed up from his chair and stood on his only remaining foot. After a bit, everyone sang the national anthem. Michael raised his hand to his face and held the salute. A tear formed at the corner of his only remaining eye. He had lost his foot and his eye to diabetes, long after his service in the late 1960s in Korea.

About 100 people were crowded into a small auditorium at the VA Medical Center in the Richmond District to pay tribute to all veterans, but more specifically to those suffering various illnesses requiring treatment at the center.
House Speaker Nancy Pelosi, D-San Francisco, thanked the veterans for their sacrifice and vowed to bring legislation in Washington to provide more help to veterans.

"There's a saying among the troops that you leave no man behind," Pelosi said. "We aim to make that, leave no veteran behind, either."

In the words of Abraham Lincoln at his second inauguration: "Let us strive on to finish the work we are in; to bind up the nation's wounds; to care for him who shall have borne the battle, and for his widow, and his orphan - to do all which may achieve and cherish a just and lasting peace, among ourselves, and with all nations."

Advice: Ask a vet you know if he’s getting good medical care.

Read stories of the medical errors affecting our veterans.

Thanks to John Koopman for the source story in today’s San Francisco Chronicle.

Sunday, November 9, 2008

He's hiking 2,000 miles: Lou Gehrig's Disease

Ben Davis became committed to fighting ALS (amytrophic lateral sclerosis, Lou Gehrig's Disease) after watching Bill Jackson, a chef at the restaurant he manages, die from the disease. An endurance athlete, Ben is hiking the length of the 2,175-mile Appalachian Trail to raise money to fight ALS.

He is going south toward the end of the trail in Georgia. You can follow his progress at www.2175forALS.com

Advice: Get friends like Ben Davis.

Read another ALS story.

Thanks to George Vecsey for the source article in the Nov. 8 issue of the NY Times.

Saturday, November 8, 2008

I chased his friends down the hallway: Flu shots

As the daughter of one Minneapolis firefighter and the wife of another, Linda DeLude thought she knew the dangers that her husband, Barry, faced on the job.

The flu virus didn't even make the list. Until one day in 2007.

In late January, Barry DeLude and his crew responded to a medical emergency at a nursing home. Two days later, he started feeling achy and complained of the worst headache of his life.

He was a healthy 44-year-old with two jobs, two kids and the strength of an ox. No one, least of all his wife, suspected that a bout of the flu would kill him.

"I hate the word 'flu' because it sounds so innocuous," she says now, 20 months after Barry, her high-school sweetheart, died. Looking back, Linda DeLude believes her husband could have survived if he had had a flu shot. Since then she has become something of an evangelist on the subject. "I don't want to see anybody go through what we've gone through," she said.

This fall, she joined a campaign by the American Lung Association, called "Faces of Influenza," sharing her story publicly to encourage people to get vaccinated. She is also volunteering at a flu-shot clinic starting today at a Minneapolis fire station to take the message to her late husband's friends and colleagues. Last fall, she said, "I literally chased some of his friends down the hallway" to make sure they got their shots. "I have no shame," she said. "It would just break my heart to see any of them get super sick."

Flu shots weren't even on her radar, she admits, until her husband fell ill.

She had heard the statistics: Every year, an estimated 36,000 Americans die of complications from the flu and more than 200,000 are hospitalized. But like many people, she said, she didn't take the threat personally.

When her husband woke up on Feb. 2, 2007, feeling lousy and his head throbbing, he insisted on going to work anyway. He returned home at lunchtime "sick as a dog," his wife said, but refused to call a doctor. Two days later, on Super Bowl Sunday, he collapsed in the bathroom. Linda called 911. The emergency responders all knew him and insisted that he go to the hospital. Doctors found that he had not only influenza, but pneumonia and a host of other infections that can flourish in the presence of flu. Sending him home on antibiotics, the doctors told him he'd "have to ride it out." But within two days, he was back in the hospital struggling to breathe. Linda remembers seeing the terror in his "beautiful blue eyes," before he lost consciousness. "He went into the intensive care unit, and he never came home."

His death was caused by an infection in his blood stream, a complication of influenza.

Last month, Barry DeLude was honored at a national ceremony in Colorado Springs for firefighters who have died in the line of duty. Officials determined that he was probably exposed to influenza on the job.

At the home they shared in south Minneapolis, Linda DeLude still wears a bracelet with his name. She points with pride to the coffee table he built by hand, and admits she sometimes talks to his box of ashes, which she keeps on the fireplace mantle. Their sons Jake, 19, and Mark, 17, "miss him desperately," she said. Last Sunday, as she returned alone from a family weekend at Jake's college in Duluth, Linda remembers thinking: "This is ridiculous. Barry should be here with me."

"Of course, I started to cry," she added. "This is something you never get over. You learn how to live with it. Kind of."

Advice: Get flu shots now for your family.

Read another flu story.

Thanks to Maura Lerner for the source article in the Minneapolis/St. Paul Star Tribune of Oct. 29.

Friday, November 7, 2008

I've never been prouder of an internal organ: A colonoscopy

David Barry's story:

I called my friend Andy Sable, a gastroenterologist, to make an appointment for a colonoscopy. A few days later, in his office he showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis.

Then Andy explained the colonoscopy procedure to me in a thorough, reassuring and patient manner. I nodded thoughtfully, but I didn't really hear anything he said, because my brain was shrieking, quote,


I left Andy's office with some written instructions, and a prescription for a product
called 'MoviPrep,' which comes in a box large enough to hold a microwave oven. I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America 's enemies.

I spent the next several days productively sitting around being nervous. Then, on the day before my colonoscopy, I began my preparation. In accordance with my instructions, I didn't eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor. Then, in the evening, I took the MoviPrep. You mix two packets of powder together in a one-liter plastic jug, then you fill it with lukewarm water. (For those unfamiliar with the metric system, a liter is about 32 gallons.) Then you have to drink the whole jug. This takes
about an hour, because MoviPrep tastes – and here I am being kind - like a mixture of goat spit and urinal cleanser, with just a hint of lemon.

The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, 'a loose watery bowel movement may result.' This is kind of like saying that after you jump off your roof, you may experience contact with the ground.

MoviPrep is a nuclear laxative. I don't want to be too graphic, here, but: Have you ever seen a space-shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything.

And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet.

After an action-packed evening, I finally got to sleep. The next morning my wife drove me to the clinic. I was very nervous. Not only was I worried about the procedure, but I had been experiencing occasional return bouts of MoviPrep spurtage. I was thinking, 'What if I spurt on Andy?'

How do you apologize to a friend for something like that? Flowers would not be enough.

At the clinic I had to sign many forms acknowledging that I understood and totally
agreed with whatever the heck the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked.

Then a nurse named Eddie put a little needle in a vein in my left hand. Ordinarily I would have fainted, but Eddie was very good, and I was already lying down. Eddie also told me that some people put vodka in their MoviPrep. At first I was ticked off that I hadn't thought of this is, but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom,
so you were staggering around in full Fire Hose Mode. You would have no choice but to burn your house.

When everything was ready, Eddie wheeled me into the procedure room, where Andy was waiting with a nurse and an anesthesiologist. I did not see the 17,000-foot tube, but I knew Andy had it hidden around there somewhere. I was seriously nervous at this point. Andy had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand.

There was music playing in the room, and I realized that the song was 'Dancing Queen' by ABBA I remarked to Andy that, of all the songs that could be playing during this particular procedure, 'Dancing Queen' has to be the least appropriate. 'You want me to turn it up?' said Andy, from somewhere behind me. 'Ha ha,' I said. And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like.

I have no idea. Really. I slept through it. One moment, ABBA was yelling 'Dancing Queen, Feel the beat of the tambourine,' and the next moment, I was back in the other room, waking up in a very mellow mood. Andy was looking down at me and asking me how I felt. I felt excellent. I felt even more excellent when Andy told me that It was all over, and that my colon had passed
with flying colors. I have never been prouder of an internal organ.

Advice: Grin, and bear it - a colonoscopy is a worthwhile 50th birthday present to yourself.

Read another famous person’s colonoscopy story.

Thanks to David Barry for the source story.

Thursday, October 30, 2008

I didn't want to end up with someone else's meal: Colored name tags and hospital bracelets

Nurses at Roosevelt Hospital in New York City were caring for Tom Pineault, age 74, a former merchant seaman, who was recovering from surgery for an ulcerated foot. When they pointed out the yellow name tag on the door of his hospital room, denoting that he was at risk of a fall, he also checked the tag for his name. "I made sure that was me that was in there," he said. "I didn't want to end up with somebody else's meal."

Hospitals are using color-coded name tags and bracelets much more frequently now to avoid errors, by quietly alerting the nurses who see them. The colors differ from hospital to hospital, which may be confusing for nurses who work at different hospitals.

Advice to hospital patients and their advocates: Ask about the meaning of any colored bracelets or name tags you receive. It'll ensure that you get the right meal – and maybe the right meds.

Thanks to Anemona Hartocollis for the article in the Sept 25 issue of the New York Times.

Tuesday, October 28, 2008

Mustard and relish sandwiches: Broadening health insurance coverage

From Barack Obama's More Perfect Union speech, March 18, 2008, Philadelphia, Pennsylvania:

There is a young, twenty-three year old white woman named Ashley Baia who organized for our campaign in Florence, South Carolina. She had been working to organize a mostly African-American community since the beginning of this campaign, and one day she was at a round-table discussion where everyone went around telling their story and why they were there.

And Ashley said that when she was nine years old, her mother got cancer. And because she had to miss days of work, she was let go and lost her health care. They had to file for bankruptcy, and that's when Ashley decided that she had to do something to help her mom.

She knew that food was one of their most expensive costs, and so Ashley convinced her mother that what she really liked and really wanted to eat more than anything else was mustard and relish sandwiches. Because that was the cheapest way to eat.

She did this for a year until her mom got better, and she told everyone at the round table that the reason she joined our campaign was so that she could help the millions of other children in the country who want and need to help their parents too.

Now Ashley might have made a different choice. Perhaps somebody told her along the way that the source of her mother's problems were blacks who were on welfare and too lazy to work, or Hispanics who were coming into the country illegally. But she didn't. She sought out allies in her fight against injustice.

Anyway, Ashley finishes her story and then goes around the room and asks everyone else why they're supporting the campaign. They all have different stories and reasons. Many bring up a specific issue. And finally they come to this elderly black man who's been sitting there quietly the entire time. And Ashley asks him why he's there. And he does not bring up a specific issue. He does not say health care or the economy. He does not say education or the war. He does not say that he was there because of Barack Obama. He simply says to everyone in the room, "I am here because of Ashley."

I'm here because of Ashley." By itself, that single moment of recognition between that young white girl and that old black man is not enough. It is not enough to give health care to the sick, or jobs to the jobless, or education to our children.

But it is where we start. It is where our union grows stronger. And as so many generations have come to realize over the course of the 221 years since a band of patriots signed that document in Philadelphia, that is where the perfection begins.

Advice: Vote for, and work for, a presidential candidate who will broaden health insurance coverage.

Read another story of poor access to care.

Friday, October 24, 2008

Don't tell my wife: Stretching prescriptions

Martin Schwarzenberger, a 56-year-old accounting manager for the Boys and Girls Clubs of Greater Kansas City, s stretching out his prescriptions. Martin, who has Type 1 diabetes, is not cutting his insulin, but has started scrimping on a variety of other medications he takes, including Lipitor.

"Don't tell my wife, but if I have 30 days worth of pills, I'll usually try to stretch those out to 35 or 40 days," he said. “You're trying to keep a house over your head and use your money to pay all your bills."

Advice: Ask your doctor which of your prescriptions you can stretch with the least harm.

Read another story of access to care.

Thanks to Stephanie Saul for the source article in the Oct. 22 issue of the New York Times.

Thursday, October 23, 2008

They didn't mention it at all: Jon Lester, cancer survivor

The second game of the World Series is on as I write this, and the Red Sox aren't in it. Jon Lester pitched very well in game seven, but was out-duelled by Tampa Bay’s pitchers.

The announcers talked a lot during the game about the power and mix of Jon's pitches. They didn't mention at all that he was a cancer survivor.

Early in the season in Jon's first few victories on the baseball diamond, the headlines and the stories focused on the marvel that Jon could have returned, after cancer, to the top of his game. Now, it is a mark of how far he has come in his recovery that they don't mention it at all.

Advice: Understand that your cancer survivor friends may prefer not to talk about their cancer, that they don't want to be defined by it.

Read another story about Jon Lester.

Saturday, October 18, 2008

He still had headaches: A brain injury during a football game

Ryne Dougherty, a high school football player in Montclair, New Jersey, died on Wednesday of a brain hemorrhage he got while making a tackle during a junior varsity football game.

He had sustained a concussion on September 18, and then doctors cleared him to return to play three weeks later, even though he had told a teammate that he still had headaches – showing he had not fully recovered from the concussion.

His high school uses the ImPACT neurological testing program, a computer-based protocol that helps determine whether an athlete has recovered from a concussion. A baseline is performed before the season to gauge short-term memory and other mental functioning. Then, after a concussion, the player takes the test again, and the results are compared to the player's baseline results.

However, they had not actually given Ryne the baseline test.

Ryne was the second player in New Jersey, and at least the fourth in the U.S., this season to die from a brain injury.

Advice to parents of high school football players: Insist on a baseline test of mental function before the season.

Read another football story.

Thanks to Michael Schmidt and Dave Caldwell for the source article in Friday's issue of the New York Times.

Friday, October 17, 2008

We're not done yet: Drug court for drug abusers

At a regular session of the Seattle drug court, Jenifer Paris, 36, sounded hopeful. She was six months clean, she said, after 22 years of cocaine and heroin use and stretches of homelessness and prostitution. She is in a methadone maintenance program – acceptable to many drug courts – and in therapy.

"You guys are the first people to believe in me," she said. "I'm full of gratitude for the opportunity and for you not kicking me out," she said, eyes sweeping from Judge J. Wesley Saint Clair to the prosecutor and her public defender.

"We're not done yet," Judge Saint Clair replied with a hint of a smile.

Advice for family members of drug addicts: Drug court may help them straighten out.

Read another drug court story.

Thanks to Erik Eckholm for the source article in the Oct. 15 issue of the NY Times.

Thursday, October 16, 2008

Like the difference between black and white TV and HDTV: Misdiagnosis of an MRI scan

Jim Glanz, the Baghdad bureau chief for the New York Times, was playing touch football in New York in late 2005 when he landed hard while diving to make a catch, both elbows hitting the ground at once. The next day, his fingers and hands hurt so much he couldn't type.

But an MRI showed nothing except some bulging disks in his neck that, he was told, were common in people his age, 50. He was advised to do neck exercises, and eventually he felt better.

About a year later, he fell again while playing football. His symptoms came roaring back.

The worst was when he woke up in the morning, Jim said. The two middle fingers on each hand were so stiff they would not even bend. He would massage his fingers and loosen them, but his hands and knuckles ached all day. He tried ibuprofen, to little avail.

Finally, last spring, he sought help at the NYU Hospital for Joint Diseases, where he had another MRI. It turned out that he had a nerve impingement so serious that he was warned that he risked permanent paralysis if he did not have surgery. So this summer, he had a major operation called a French-door laminoplasty, in which his surgeon opened and widened four or five vertebrae to free the trapped nerves.

How could his MRI’s have come to such different conclusions? MRI machines vary in four ways: First, some use higher quality, more sensitive imaging coils that surround the body parts being scanned. Second, their computer programs vary in the way they form the images. Third, some technicians are much more skilled than others. Fourth, the strength of the machines' magnets varies. The difference can be like the difference between seeing a black-and-white TV versus HDTV, says Dr. John Kennedy of the Hospital for Special Surgery in New York.

Advice to people about to have an MRI: Make sure the radiology center is accredited by the American College of Radiology.

Read another MRI story.

Thanks to Gina Kolata for the source article in Tuesday's New York Times.

Friday, October 10, 2008

It’s almost unfair to my loved ones: A brain tumor support group

Jeffrey Schanz of Washington, DC is an 11-year survivor of a glioblastoma. After treatment, he was able to return to his high-pressure job with the U.S. Department of Justice as director of the Office of Policy and Planning within the Audit Division. He recently accepted a new job as inspector general of the Legal Services Corporation, which provides legal assistance to low-income people.

Jeffrey, age 56, runs a support group at the George Washington Cancer Institute in Washington, DC. Support group members share nutrition and exercise tips, information about alternative therapies, and humor.

Attending a support group helps him deal with the ups and downs of his recovery. Though his thinking is about the same as it was before the brain tumor, “not every day is a good day….There have been cases where I’ve had to be more deductive to figure out what was going on instead of just snapping my fingers and going, ‘Oh, yeah, I understand that...' In the brain-tumor world we call it a ‘new normal’ because you’re never going to be the same person," he says.

He understands the need for camaraderie. “It’s almost unfair to my loved ones,” he says, “but I’m more comfortable with brain-tumor survivors because we all know what we’ve gone through. It’s still hard to articulate how hard you have to fight.”

Advice to people with a brain tumor: Find a support group to participate in.

Read another brain tumor story.

Thanks to Stephanie Cajigal for the source story in the September/October issue of Neurology Now.

Monday, October 6, 2008

Her first one since childhood: Counselors for the uninsured

Francine Fitz, a 57-year-old Worcester widow who relied on the E.R. for routine health problems until she was diagnosed with breast cancer last year, is one of the patients helped by counselors at the UMass Memorial Medical Center. The counselor, Heather Reddick, helped her enroll in subsidized health insurance. A telemarketer paid $10 an hour, Francine could not afford her employer's health plan, she said.

The counselor also helped her find a primary care doctor, her first one since childhood. The doctor works at a UMass health center and had just opened his practice to new patients, so Francine was able to get an appointment the next day.

Now, when she feels sick, she calls her doctor first, instead of heading to the E.R.

"I have never seen a doctor who calls me at home to make sure I'm OK," she says. "He even gives my children his private cell phone number, if they have a question."

A number of medical centers have added telephone help lines, counselors and social workers in their E.R.s to answer insurance questions, enroll uninsured people, and find them a primary care doctor. UMass Memorial Medical Center has gone further, sending counselors to laundromats, barber shops, farmers' markets, and churches. Armed with BlackBerries, portable scanners and laptops, they sign people up for insurance as well as food stamps, Social Security disability coverage, and other programs.

Advice to uninsured people in the E.R.: Ask the hospital what help they can give you in addition to treating your immediate medical problem.

Read another story about the new Massachusetts health coverage law.

Thanks to Kay Lazar for the source story in today's Boston Globe.

Saturday, October 4, 2008

We can still do some good: Public learning from a fatal misdiagnosed aortic dissection

This story was the subject of a particularly popular seminar at the conference today of the American Society for Healthcare Risk Management in Boston. It was so popular that the room was filled to capacity, leaving many others outside – like me. So this story comes from Michael O’Connor of the Omaha World-Herald, rather than from the presentation by lawyer Sara Juster, Vice President of the hospital:

Watch a new video produced by Methodist Hospital and you'll see Tyler Kahle looking just like he did the weeks before he died: chiseled face, short brown hair and a big smile.

The death of the 19-year-old Omahan five years ago resulted in a lawsuit against Methodist and an out-of-court settlement that included creation of the video.

Parts of the 20-minute video are a tribute to the young man. It shows him graduating from high school, skateboarding, wave-boarding and doing the high-energy activities he loved.

Other parts carry messages that legal experts say are surprising and uncommon.

In the video, initiated by Methodist, the hospital's doctors acknowledge the mistakes that Methodist made in diagnosing the medical problem that caused his death. Legal experts say it's rare for doctors and hospitals to publicly acknowledge mistakes after a settlement.

"It's more common that they don't parade around [saying] that we made a mistake," said Craig Dallon, a professor at the Creighton University School of Law.

What's also unusual, he said, is that Methodist has posted the video, made in cooperation with Tyler's family, on its Web site and plans to distribute it as a DVD nationally to educate other hospitals and doctors about the aortic dissection that led to Tyler's death.

"It was a way to memorialize Tyler, and we hope to prevent this from happening again," said Sara Juster, a vice president for Nebraska Methodist Health System, whose duties include overseeing the hospital's legal cases.

During negotiations for the settlement with the man's family, Methodist raised the idea of the video and the family backed it, said Juster and Deb McMillan, Tyler's mother.

Deb said the video provided the justice she wanted for her son. She wanted Methodist to publicly admit its mistakes. She also wanted the hospital to help educate other health care providers and prevent deaths.

"If I can't have my son back, we [can still do] some good," she said.

During an eight-day span in fall 2002, Tyler went twice with chest pains to the Methodist emergency room and once to his family doctor at Methodist Physicians Clinic.

All three times, Methodist physicians diagnosed and treated Tyler for upper respiratory problems.

Deb repeatedly told Methodist doctors about her son's family history of aortic dissection, but he was never given a scan for the ailment. He died four days after his last trip to the Methodist emergency room.

Aortic dissection — deadly if not diagnosed quickly — is a tear in the lining of the main artery for blood leaving the heart. It can be spotted with medical imaging equipment and can be treated. The ailment, which killed actor John Ritter, runs in families, including Tyler's.

In the video, Methodist doctors say Methodist did not take into account Tyler's family history of aortic dissection and did not consider the fact that it can occur in young people.

Dr. Anton Piskac, Methodist vice president for quality improvement, said in the video: "We had multiple opportunities to do the right thing and repeatedly neglected to do so."

Dallon, the law professor, said the video may reflect the frustration some doctors and hospitals have with defense attorneys who typically advise not to acknowledge any mistakes. The "I'm sorry" laws in Nebraska and more than 25 other states are another sign, he said.

Nebraska's law, approved in the last session, makes a health care provider's expression of apology, sympathy or compassion inadmissible as evidence of liability in a lawsuit.

Juster said Methodist wanted to share its experience because hospitals across the country have lacked an understanding that young patients with a family history of aortic dissection can suffer from it.

She said Methodist did not offer to produce the video as a way to reduce the financial payment to Tyler's family that was part of the settlement. Both sides declined to reveal the amount.

Omaha attorney Jeffrey Welch, who represented Tyler's family, said money wasn't the family's priority. They wanted to keep the young man's memory alive and prevent other deaths.

Advice to parents: If you disbelieve a doctor's diagnosis, ask what else it could be. If you know an inheritable condition may be involved, ask if that can be ruled out as a diagnosis, and why.

See a short video by a survivor about an instructive medical error.

Friday, October 3, 2008

I was just starting to feel comfortable: A patient-doctor relationship

Mrs. J. looked baffled and hurt. I had just explained that I would no longer be her primary care doctor. I was leaving the field after just three years. "I have had three different primary care doctors over the past 10 years," she said. "You can't leave now. I was just starting to feel comfortable. I am getting older now. I can't keep changing doctors!"

Primary care is in crisis. Current primary care doctors are quitting, and medical students are pursuing other specialties. Primary care has lost its attractiveness as a profession because of poor compensation and plummeting job satisfaction. Primary care physicians are in short supply, and in Massachusetts, this problem has intensified in the wake of healthcare reform, as more than 300,000 previously uninsured individuals have joined in the search for available doctors.

As a former primary care physician, I am most troubled by the antagonistic state of the patient-doctor relationship. The system sets us against each other. Like many in the field, I chose primary care because I love people. I wanted to take care of the whole person, body and mind. I wanted the intimacy that comes with knowing your patients well and following them over many years. These goals are difficult to achieve in primary care today. After two years in my practice, I walked into an exam room one day and introduced myself to a patient. "We have met before," she replied, clearly aggravated. I was horrified and saddened.

Patients are angry, and rightly so. They feel frustrated by the inability to get timely appointments with their physicians, rushed by the 15-minute visits and the seemingly harried doctors, ignored when they do not receive letters with lab results or follow-up phone calls. They feel disrespected when they come to their medical appointments on time and then sit in the waiting room for 45 minutes. All of these feelings are justified. We are not offering high-quality care.

Doctors feel angry, too. We have too many patients. It is not uncommon for a full-time primary care doctor to have upwards of 3,000 patients. It is impossible to know all of these individuals well, to give adequate focus to each person's unique situation, to sift through the piles of paperwork and lab data daily. Our days are divided into 15-minute sessions, back to back. We move frantically from exam room to exam room, trying desperately not to fall behind in our schedule. We are given incentives to see patients as quickly as possible. We live in fear of litigation.

We are drowning, and in this overwhelmed state we lose our ability to take good care of people. Outwardly, we may feel resentful and burdened. Underneath, many of us feel loss, deep sadness, and personal failure.

This rift between patient and doctor is painful and destructive to the core of medicine: the therapeutic relationship. In an environment where patients and doctors don't know each other well and appointments are rushed, it is inevitable that more medical errors occur and that resources are wasted as expensive tests are substituted for communication. By contrast, research indicates that medicine practiced in the context of solid primary care relationships allows for earlier detection of chronic diseases, and, ultimately, better outcomes and monetary savings, to say nothing of patient and doctor satisfaction.

Dr. Brewster's Advice: Primary care physicians should be valued as team leaders and advocates, poised to help patients navigate the complex medical system.

Read another story on the patient-doctor relationship.

Thanks to Dr. Annie Brewster for the source OpEd in the Boston Globe of May 29.

Thursday, October 2, 2008

She kept the remaining ones: A fatal fentanyl patch drug error

After an accident several years ago, a woman got a prescription for fentanyl patches to treat her chronic pain. She didn't use all the patches, and kept the remaining ones.

Years later, her six-year-old daughter complained of neck pain late one evening. The foster mother gave her an appropriate dose of ibuprofen, and placed one of the left-over fentanyl patches on her neck to treat the pain. The next day, the girl was found unconscious in bed, and was pronounced dead by the time she arrived in the hospital’s Emergency Room.

Mike Cohen's advice to parents: Discard unused prescription medication after you're done with it. Ask your pharmacist about the safe use of fentanyl patches. Don't share fentanyl patches with anyone else.

Read another Fentanyl story.

Thanks to Michael Cohen for the source story in his ISMP Medication Error Report Analysis, published in Volume 43, Number 9 of Hospital Pharmacy.

Wednesday, October 1, 2008

It helped to save his life: Universal health insurance in Massachusetts

Tim [not his real name] was not feeling well, but didn’t see a doctor because he had no health insurance. He was uninsured for several years before he contacted Health Care for All’s HelpLine. The counselor helped him apply for benefits over the phone. Tim says, “Without Commonwealth Care, it would be nearly impossible to find an affordable health insurance plan.” Since becoming insured and seeing a doctor, Tim was diagnosed with diabetes and is being treated. It’s clear to him that getting insurance through Commonwealth Care and finally visiting a doctor helped to save his life.

The flip side of Tim's story from the files of Health Care for All is seen in a story from my aunt's life. The timely diagnosis and treatment of diabetes may well have given extra years of active life to my aunt, Anne Troutman, as well. A very high-energy woman into her 70s, she loved to travel. She didn’t treat the poor circulation in her feet, and required an amputation of her big toe late in life. That greatly reduced her ability to get around, and her quality of life. We don’t know how much she knew about her diabetes and self-care, for she died, not long afterward, of a heart attack. Clearly, a doctor could have helped her, as Tim’s doctor is helping him.

Advice: Ask your friends if they have health insurance, and refer them to the HelpLine at 800-272-4232 if not. The HelpLine answers questions about healthcare in Massachusetts, including co-payments, health insurance rules, directions, program eligibility, and much more.

Read another story about care for the uninsured.

Thanks to Amy Franz for the source story in the Fall 2008 newsletter of Health Care for All.