A perfectly normal life, getting into trouble with the press: Geraldine Ferraro's multiple myeloma

Geraldine Ferraro's story:
Former Congressional and Vice Presidential candidate Geraldine Ferraro of New York will be the keynote speaker at the second annual "Reaching for a Cure" gala on Friday, May 2, at the Weston Boston Waterfront Hotel, funding research in multiple myeloma for the Dana Farber Cancer Institute.

I had run for the U.S. Senate in 1998, and was finding that I couldn't get up in the morning or stay up late at night; I was just too tired.

I went to my doctor for my annual checkup. He told me that I had either leukemia, lymphoma, or multiple myeloma. The prognosis was three to five years, but he said some patients had lived ten years and were still going strong.

Then my internist sent me to an oncologist/hematologist, and they said we should get an expert in multiple myeloma – Dr. Ken Anderson. He has been been caring for me ever since.

I was put on Aredia once a month. Later, I took thalidomide, and it helped a lot. When the cancer became active again, I went through another clinical trial for another new drug therapy with Revlimid. In December 2004 the doctors harvested my stem cells. I had the transplant in June 2005, the year I turned 70. But ten months later the cancer was active again, so I was put on Velcade. With the treatment, I live a perfectly normal life, giving speeches and getting into trouble with the press.

In 2001 I went public with my disease to help researchers get congressional hearings. I testified to Congress. Friends like Senators Patty Murray, Kay Bailey Hutchison, and Barbara Mikulski also knew about my disease, and they sponsored a research bill, the Hematological Cancer Research Investment and Education Act of 2002, and the Geraldine Ferraro Cancer Education program, to educate medical, patient, and policy communities on research advances.

The message is: If diagnosed, this cancer is not the end of the world. There is so much research today, and we can live with multiple myeloma as a chronic disease.

Geraldine Ferraro's advice: Patients need to be informed consumers: If your doctor is not a specialist, contact the people who are. Dana-Farber will answer questions from any doctors who reach out. Press for health care for all, so others can be treated. We have to address the high cost of cancer drugs. Write to your representatives.

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

Thanks to Katie Smith Milway for the source article in the April 10 issue of the Needham [Massachusetts] Times.

Listening to Leviticus: Transfusions for a Jehovah's Witness

Dr Bruce Campbell's story:
I had met the man lying on the operating table before me two weeks ago. Physically, he was substantial and rough-hewn with clear, intelligent eyes and an engaging, peaceful demeanor. A series of studies revealed a large mass of a goiter into his upper chest, though there were no signs of cancer.

During the initial office visit, we covered the standard discussion of surgical risks. I presented each and discussed prevention and management.

"Doctor," he told me, you have to know I am a Jehovah's Witness." He smiled and matter-of-factly outlined his convictions without any hint of embarrassment or sign that he was primed for an argument; he readily acknowledged that there might be real and serious consequences if he started bleeding during the operation. I was only too aware that the tenets of his faith prohibit the use of any blood transfusions. Despite the risks, he remained completely serene. My anxiety, on the other hand, started at that moment to take shape.

Would he refuse all types of transfusions? Yes. Would he agree to donate blood ahead of time in case we needed to transfuse it back to him? No. Could we salvage his own blood, process it, and return it to him during the operation? No. Did he realize that his blood cell count might possibly get so low that it could be very dangerous? "Doctor, I understand completely that by refusing blood transfusions, I might die. That is the choice I have made, and I am very comfortable with that choice. I have faith that things will go just as they are meant to go."

Now, on the operating table two weeks later, things were not going as well as I had hoped. The muscles had been difficult to separate cleanly from the superficial surface of the thyroid gland. The limited space between the bone of the spine and the bone of the sternum was completely filled by the mass.

As I repeatedly advanced my finger into the unyielding space, I was aware of the firm pressure pushing back at me. I continued to second-guess myself: What had I so quickly agreed to operate on him?

Again I pushed. Then again. Suddenly, something deep and unseen gave way and the goiter noticeably moved upward into the palm of my right hand. I filled the space behind it with surgical sponges.

Then I carefully removed the sponges one by one. A pool of blood appeared in the cavity. I held my breath and stared for several seconds, finally convincing myself that nothing was welling up from below. I began to breathe again.

What emergency course of action might I have recommended if he had experienced a massive hemorrhage during the operation? Would I have tried to force his family to consider a lifesaving transfusion? I was still not certain.

Advice: Express your moral and religious values clearly to your doctors.

Browse for related stories in the index at the very bottom of this page.

Thanks to Dr. Bruce Campbell for the source article in the Feb. 27 issue of the Journal of the American Medical Association.

Medicare could have paid for an entire preventive health program: End of life care

Dr. Sam Forman's story
My mother, Rose, was a 4'11" firecracker of South Philadelphia womanhood. She fit a disproportionate interest in humanity and a high decibel level into a small package. That came in handy when she worked during World War II as an inside riveter in the nether regions of B-24 Liberator bomber tail sections: she was a real life Rosie the Riveter.

Much later, in her 80s, she was struck by a heart attack. Over the course of a year, she became the consumer of a dizzying array of specialist physicians and nurses, high-tech diagnostics, cardiac surgery, novel pharmaceuticals, therapeutic devices, and specialty-care facilities. As the family member most suited to be her guide through the maze, I was struck by the providers of all stripes posed with hair triggers to unleash the most novel, the most innovative, and coincidentally the most expensive therapies. After initial treatment reversals leading to scant hope of returning to the independent life she treasured, the collective system would not hear the patient Rose's desires for a less aggressive, more personal and dignified approach.

After her ordeal finally ended, my siblings and I noted that what Medicare had spent on our mother could have paid for prenatal care in broad swaths of inner-city Philadelphia, or an entire preventive health program in some third-world country. All Rose had wanted was to pass on quietly to, as she viewed it, rejoin her husband, Akiba, who had died 10 years before. All the while, providers, institutions, and suppliers were doubtless counting their consumer scorecards. I suspect that the fruitless surgical interventions were probably counted as successes, given what I know about the definitions and time frames of such total quality measures in the increasingly consumer-oriented clinical world.

We can do better for Rosie the Riveter and, indeed, for ourselves and American society.

Advice: You can opt out of aggressive care. Consider hospice care for gravely ill family members.

Browse for related stories in the index at the very bottom of this page, or read an end of life story.

Thanks to Dr. Sam Forman for the source story, published in the Spring 2008 issue of Q3, a publication of the Yale School of Organization and Management.

An epic battle, for no reason: Undiagnosed vision problems in returning Iraq veterans

Army Staff Sergeant Brian Pearce came home from Iraq with 20/20 vision – and a diagnosis of legal blindness. It has taken him much of the lat 18 months, since he arrived home on a stretcher with severe injuries from the blast of an improvised explosive device, to make sense of that paradox.

Dr. Kara Gagnon, director of low vision optometry at the West Haven, Connecticut veterans hospital, explained that "your eyes are healing. It's your brain that won't allow your eyes to work the right way." Shrapnel had penetrated his skull and jarred his brain, damaging his optic nerves.

Since a binocular dysfunction keeps his eyes from working in unison, Brian had been straining his upper body to compensate, and was bothered by headaches and neck pain.

When the brain is jostled by a blast, the force can disrupt the circuitry that allows the eyes to work in unison or to process the entire visual field. Double vision, trouble focusing, and poor spatial orientation can result from TBI. Some can be fixed easily with corrective lenses or other adaptive devices; others can require extensive therapy to retrain the brain and eye muscles.

Through six weeks of intensive therapy in her clinic, Brian learned how to navigate a disjointed visual field and to compensate for the permanent loss of his peripheral vision. The therapy and special prism glasses have eased his problems.

But Brian is the exception; most veterans with his condition are not diagnosed appropriately. In their recent report, Government Accounting Office investigators wrote that only one of the nine VA facilities they reviewed was referring all veterans with traumatic brain injury (TBI) to a vision specialist.

There are many veterans like Brian. Last week, a study by RAND Corporation found that about 320,000 service members have likely experienced a traumatic brain injury during their deployment. Last November, doctors at the VA hospital in Palo Alto, California reported that 74% of veterans they studied with TBI and other traumatic injuries reported vision problems. This implies that up to 80,000 veterans have undiagnosed vision problems.

Meanwhile, the Defense Department has taken only the first steps to set up a center of excellence. Though Congress authorized an affiliated eye center, plans for it are in limbo. "This has turned into an epic battle, for no reason," says Thomas Zampieri, director of government relations for the Blinded Veterans Association.

Advice to families of returning Iraq veterans: Ask their primary care physician to ask the veteran about headaches, double vision and trouble reading.

Read another Iraq veteran’s TBI story.

Thanks to Lisa Chedekel for the source story in the Hartford Courant of April 20.

Don't save me because we're friends: Affective error by physicians

Dr. Karen Delgado [not her real name] is an acclaimed specialist in endocrinology and metabolism at a large urban teaching hospital. She cares for patients with hormonal and metabolic disorders such as diabetes, infertility, and hypothyroidism.

Dr. Delgado has genuine affection for many of her patients, so I asked whether she had ever fallen into the trap of affective error [where a doctor's feelings about a patient cloud clinical judgment]. She answered, "I had an elderly patient with thyroid cancer and considered treating him with radioactive iodine. There are difficult logistics involved with the therapy, and it really can disrupt the person's life. I was just about to refrain from treating this man when he said to me: 'Don't save me from an unpleasant test just because we’re friends.'"

Dr. Jerome Groopman's Advice: In severe circumstances, the family or friends of patients who realize that a doctor's affection may stay his hand at times can address this concern by saying, "You should know how deeply we appreciate how much care you show. Please know also that we understand you may need to do things that cause discomfort or pain."

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

Thanks to Dr. Jerome Groopman for this excerpt from his book, How Doctors Think.

All he had to do: After the kidney transplant

Of course he had a right to be ecstatic. After many years on the waiting list for a kidney, his turn had come. He grabbed my arm and pointed to the urine that had collected in the tubing next to his hospital bed, the first visible evidence of his new kidney.

"Working like a charm!"

In a few days, he was discharged home to enjoy his new life, free from dialysis.

When I heard his name again, nearly a year later, I was immediately curious.

"I'm going to kill him!" The nurse practitioner who coordinated transplant care gestured over her shoulder to the numbers on the screen. The new kidney was barely functioning. "He stopped coming to clinic – I’ve been calling him for weeks."

He had stopped taking his immunosuppressive medicine two months earlier. Now his body was rejecting the kidney.

Once he was admitted to the hospital, I learned the reason. He'd had no side effects from the medicines; he had excellent insurance coverage, and a loving and supportive family. All he had to do was take pills twice a day, and he was free of the four-hour dialysis sessions that had been a part of his life for years. He could eat and drink whatever he wanted, travel, sleep in – as long as he took those pills.

He explained that it had started when he skipped a dose by accident, and nothing happened. Then he went a way for a week, without his pills, and again, nothing happened. Wasn’t the transplant supposed to make him well?

I realized there must be something profound that I did not yet understand about being sick, despite working with sick people every day. Cause and effect, interventions and outcomes, costs and benefits: these are easy to contemplate when someone else has to take the pills twice a day, sit in the chair for four hours, have blood drawn every week. For my patient, being hooked up to a dialysis machine was one kind of illness, and taking pills that protected a new kidney from failure was another. Maybe for him there was only one kind of freedom, and it happened for a few days on holiday: no pills, no symptoms, no doctors, no disease.

Advice: If you don’t want to take all your medicine, discuss reasonable alternatives with your doctor.

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

Thanks to Dr. Dena Rifkin for the source story in today's NY Times.

Medicine for the brain: The role of exercise in fighting depression

On Monday mornings, Theo Baar's exhausting depression often tries to seduce him into just staying in bed. But then, he says, a staffer at Appleton House, a residence for people with psychotic disorders at McLean Hospital, comes into his room and says, insistently, "You want to go work out."

So Theo, a 22-year-old surfer and musician, drags himself to McLean's new gym and sweats through a half hour of weightlifting presses and curls. And then, he finds, he doesn't want to go back to bed. And more: his confidence is pumped up. Hs thinking tends to be less delusional, more reality-based.

"Working out helps me get my self back," he says.

His experiences reflect the recent findings of careful research: exercise may be as good for your brain as it is for your body. Evidence suggests that exercise helps reduce mental health problems, including depression, anxiety, ADHD, addiction, stress and aggression.

"Exercise may be an effective treatment for patients with clinical depression, comparable to other established treatments such as antidepressant medications," says Dr. James Blumenthal, a professor of medical psychology at Duke University, who had led some of the seminal recent studies. Other studies suggest that exercise may be as effective as psychotherapy as alleviating depression.

"Exercise is medicine for the brain," says Dr. John Ratey, a Cambridge psychiatrist and author.

Advice for people struggling against depression: Find a fun form of exercise.

Read another exercise story.

Thanks to Carey Goldberg for the source story in today's Boston Globe.

In pajamas with his weapon: Mental illness among Iraq veterans

One marine found himself outside patrolling his yard in the middle of the night in pajamas with his weapon. Others need their weapon beside them when they sleep. The adrenaline is so high for returning military that they avoid situations that drive it up, e.g., amusement parks and driving. Symptoms of anxiety also make loud noises difficult to take. One Army wife said, “My husband didn’t sleep for six months.” Anger issues were prevalent: “They go off at the simplest things,” said one spouse.
-comments of veterans and spouses in focus groups for the recent RAND study

While mental health problems are common, many veterans receive no treatment, or far too little treatment. Almost half of those who brought their problems to the attention of a health professional in the preceding 12 months did not receive minimally adequate treatment (eight sessions of psychotherapy or medication). Nearly 60% of soldiers who experienced a probable brain injury during their deployment have not been evaluated for this condition by a physician or other health specialist.
-Key findings of RAND study, Invisible Wounds of War.

Advice to spouses of Iraq vets: Insist on getting professional help for your spouse.

Browse for related stories in the index at the very bottom of this page, or read another Iraq veteran’s story.

Thanks to the RAND researchers for their study, Invisible Wounds of War.

I am incredibly and eternally grateful: Early detection of cancer through digital mammography

As a woman whose first digital mammogram revealed a potential abnormality, I was calm for the repeat imaging, expecting it to be normal on the second look.

My anxiety increased, however, during the next few months as I progressed to a series of more elaborate, more invasive tests and biopsies, and a diagnosis of a small, in situ cancer, now successfully treated.

Despite the extremely harrowing, sleepless and depressing few months (mostly spent waiting for the next procedure), I am incredibly and eternally grateful for digital mammography and for its medical practitioners who made my very early diagnosis possible.

Sally Chrisman's Advice: Don’t delay your mammograms, even if you are anxious about a possible call back. Early detection definitely saves lives.

Read another mammogram story.

Thanks to Sally Chrisman for writing to the editor of the NY Times, published in today's issue.

Only these four words of welcome: The role of prayer

It was one of those beautiful winter days after Hanukkah….I sat waiting in the outer office. Finally, I was ushered in. There were no smiles, no polite exchanges, nothing that softened the numbing reality I was about to face. Only these four words of welcome: "Your wife has cancer."

That day in the surgeon's office and the journey of the spirit that followed were the greatest challenges of my personal faith in God – and that of my family – that we ever experienced. It is part of this challenge that I share here. I offer a brief glimpse into our own struggle, hoping that it might help you with yours.

Three items proved most helpful and effective. One: we discovered that all human beings, even rabbis and their families, struggle, have doubts, and have lapses of faith. Two: like others, our faith was in desperate need of repair. It was my wife's courage and conviction in the face of her illness that allowed us to pray unabashedly to God. Through prayer and the process of spiritual renewal, our faith was literally restored to us. Three: we learned that we all need a rabbi, someone to lead us through our crises of faith, a madrich ruchani (spiritual mentor) to support us in our journeys. The rabbis of the Talmud wrote, "One cannot fully understand Torah unless one has stumbled in it." Sheryl’s cancer caused us all to stumble, but we did not fall.

We don’t know where the cancer came from, but during her illness, Sheryl taught our family that faith means not to passively accept what life deals you – whatever it is. Rather, we must seize life and struggle with it, using the force of disease against itself, not against the self – which we are prone to do. Physicians do not set the parameters for our struggle. We set the terms, always striving to remain in control, trying not to allow the disease to get the upper hand. This posture is bolstered by faith in ourselves, reflective of faith in God and the covenant we share with the Divine. Faith is the force in the world that makes for healing.

Frequently, we think of prayer in terms of the "how-to" of the liturgical process: what to say, how and when to say it, and which ritual accompaniments are required. Our family learned that we could not nurture our individual relationships with Almighty God without essential prayer. In the face of cancer, perhaps even because of it, we learned to allow the words articulated by those who came before us to truly sing through our own souls – while adding our own – and then our prayer became the powerful force in the universe that we always hoped and prayed it would be.

A spiritual teacher helps us to learn how to reach out to others, inward to self, and upward to God in order to gain inner strength, tranquility of spirit, and healing of body and soul. Like so many others, our family had taken its spiritual journey for granted. Through our encounter with Sheryl’s illness, we were reminded about it

I thank God each day that we are alive to celebrate. For us, that indeed is the miracle that we recall not only during the eight days of Hanukkah, but every day throughout the year. May you join us in the celebration, finding strength in the journey and faith along the way.

Advice: Pray with your loved ones for strength.

Read another story about faith.

Thanks to Rabbi Kerry Olitzky for the source, “Facing Cancer as a Family.”

I’ve used my unexpected fame: Last Lecture of Prof. Randy Pausch

Carnegie Mellon Prof. Randy Pausch was diagnosed with pancreatic cancer, and was invited to give a last lecture. It is now widely available on the Web.

After I gave my lecture in September, I expected to go home and quietly spend time with my family. I never imagined that my talk would be viewed online by millions worldwide. The response has overwhelmed and moved me. Thousand of people have written to me about their life lessons. I've also been buoyed by former students who've told me how my teaching made a difference to them. There's no greater gift for a teacher.

I've used my unexpected fame to advocate for pancreatic cancer research. Last month, I testified before Congress to seek funding for my disease, which is considered the deadliest of cancers.

I've had great fun too. In my lecture, I told of two childhood dreams: playing in the NFL and being Captain Kirk on Star Trek. Strangers fulfilled those wishes. I was invited to scrimmage with the Pittsburgh Steelers and got to say a line in a new Star Trek film. Both experiences were thrilling.

I'm lucky to be living longer than I expected, allowing me more time with my kids. I've tried to do unforgettable things with them – such as swimming with dolphins – so they'll have concrete memories of us and of my love for them.

I am honored that my lecture will live on and that people have found it beneficial. Honestly, though, the talk was for my kids, and it gives me comfort to know that they will one day watch it.

Advice: Say your most essential messages before it's too late.

Browse for related stories in the index at the very bottom of this page, or see a video of his moving congressional testimony last month.

Thanks to the writers of Parade Magazine for the source article in their April 6 issue.

Her nursing home wouldn't call an ambulance: Arbitration to pre-empt lawsuits

Mary Hight had moved into a nursing home when she reached her late 80s, in 2002. She was diagnosed in 2003 with congestive heart failure, though she was otherwise in good health and continued to vacation with her family, according to her son. "Mom, at 90, would be on the beach in sunglasses and a bathing suit," he says.

But in 2004, when the 92-year-old woman fell ill for days and became badly dehydrated, her nursing home in Kosciusko, Mississippi, wouldn't call an ambulance, despite her daughter's urging. Instead of seriously assessing the situation, nursing home staff engaged in a diatribe with Mary's daughter Janice about the costs of an ambulance. Her daughter, Janice Cowart, pushed her mother uphill in a wheelchair to a nearby emergency room. But her mother died from heart failure the next day.

The family was surprised to realize that when her mother had entered the nursing home, Janice had accepted a nursing home contract requiring binding arbitration to resolve disputes. The arbitrator found the home was negligent both in allowing Mary to become dehydrated and failing to get her to an emergency room. But he awarded only $90,000 to the family, saying an underlying condition could have caused Mary's death. He chose not to award punitive damages. After paying the lawyers, "we didn't get one cent," said Mary's son. The nursing home has denied wrongdoing, and has declined to comment.

The nursing home industry's arbitration strategy is part of a much broader response by U.S. companies to consumer lawsuits. Nursing homes have been among the biggest converts to the practice since a wave of big jury awards in the late 1990s.

The American Arbitration Association – the biggest arbitrator – frowns on agreements requiring arbitration in disputes over nursing home care and generally refuses such cases. The American Health Lawyers Association also avoids them.

Advice to adult children looking for a nursing home for frail parents: Question admissions personnel closely. If an arbitration agreement is mandatory, write on the contract that you're being given no choice. Write, "I'm signing this because I was told I have to."

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

Thanks to Nathan Koppel for the source article in the April 11 issue of the Wall Street Journal.

We now have a perfect little girl: Rare genetic disorders

Jenny Badner Falcon's story:
I carried two severely deformed, unviable pregnancies that were diagnosed in the second-trimester anatomical sonogram and would have likely led to stillbirth or death soon after birth.

It was only after a second detailed autopsy was performed by a dedicated and caring pathologist at Columbia University that a team of geneticists was able to give us a diagnosis. My husband and I are carriers of an extremely rare genetic disorder. But thanks to the autopsy and the diagnosis, we were able to have our third fetus tested during the first trimester and we now have a perfect little girl.

Advice to couples who have had more than one miscarriage: Jane Brody is correct to emphasize the importance of autopsies in recurrent pregnancy loss.

Read another rare genetic disorder story.

Thanks to Jenny Falcon for her letter to the editor, published in the NY Times of April 9, and to Jane Brody for her article in the Times on April 1.

Just bring the patients back: Digital mammograms to detect breast cancer

Nancy Liber, a radiologic [mammography] technician at a center that just acquired new digital mammography equipment, was called back by her own colleagues at the center after her mammogram last month.

"I thought exactly what every woman does," she said. "Immediately you panic and think, 'Oh my gosh, what if something is really wrong?!'" She found herself worrying about what would happen if she became ill and unable to take care of her children. She did not even tell her husband what had happened until after the second test, which turned out normal. The concerns were due entirely to the difference between film and digital images. Despite the stressful experience, she said that from what she had seen in her work, digital mammograms were the way to go. "The inconvenience it may cause is worth it. But I definitely know what these women are going through [from the many additional mammograms that physicians are requesting as they learn how to interpret the new digital mammograms]."

Doctors are learning how to interpret images from the digital machines that are replacing the older equipment. One physician explained to her audience of radiologists: "When you first start out, you may feel a little anxious and recall more patients because everything looks like a cancer to you. It's OK. Just bring the patients back. It's part of the learning curve." She said it could take six months to a year to interpret the new images.

The physician at Nancy Liber’s clinic commented, “" know it's not a small thing, the anxiety. Patients are practically in tears because they're so worried. But I think in the long run it's going to be to everybody’s benefit."

Advice to women getting digital mammograms: You might worry less if you realize that doctors are being extra-cautious as they learn how to use the new equipment. To be on the safe side, they're bringing in many women for additional images, and only in hindsight do they realize that was unnecessary.

Read another mammography story

Thanks to Denise Grady for her source story in today's NY Times.

Eighteen, to be exact: Adverse effects of dietary supplements

Dr. Richard Nathan, a dental surgeon in San Francisco, wrote in January about a patient who needed a tooth extracted and minor periodontal surgery. She told Dr. Nathan that she was taking two drugs, for cholesterol and blood pressure, neither of which he said would present a problem to safe surgery and normal healing.

Thus, Dr. Nathan was perplexed when the patient returned five days later unhealed, with an unattached flap of tissue, severe bleeding and an infection.

"Based on my 30 years of experience, it looked as though the patient was an out-of-control diabetic or had a severely compromised immune system," he said. "Neither was the case. However, when I asked the patient again what medications she was taking, she admitted that she was on multiple – 18 to be exact – over-the-counter supplements, for a total of 43 pills and capsules a day."

Six of these – green tea, grapeseed, ginkgo biloba turmeric, salmon oil and vitamin E, he said, "are known to increase bleeding due to inhibition of platelet aggregation," the first step in forming a clot. Within a week after discontinuing all supplements, her mouth began to heal normally.

Advice: Ask your pharmacist if your dietary supplements might have unwanted side effects.

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

Thanks to Jane Brody for the source article in Tuesday's issue of the New York Times.

I killed her: My first malpractice suit

I stared down at my name neatly typed next to the word "Defendant." And just below the heading: "Complaint: Wrongful Death Based on Medical Negligence."

Oh my God. Deceased. It was me. I killed her. That's how I heard about my first malpractice suit.

I was the new doctor in the group. I had joined fresh out of residency two years before. I was the first woman doctor in the clinic, and one of only a handful of women physicians in semi-rural Clackamas County.

My last note in Helen Simmons' chart [not her real name] was from last August, a visit for chest pain. I had first met her in my first year in the practice, in December of the year before she died. She had gone to the Emergency Room of the local community hospital with chest pain, and had been admitted overnight for observation by one of my senior partners. Covering for him, I met Helen the next day.

Her chest pain had not been a heart attack, according to blood tests overnight. Her pain was gone. But she was a time bomb, I realized. She had heart disease up and down her family tree, she smoked, and her blood pressure was high.

I told her I was glad she hadn't had a heart attack, but that I was worried she was going to, sooner or later. She could save her own life, I said, by quitting smoking and taking care of herself. She wasn't worried about all that. She wanted to go home and have Christmas with her family.

Her EKG (electrocardiogram) showed she may well have had a prior heart attack, not previously discovered, but that she had not had one just now. Heartburn was the more likely diagnosis, so I sent her home with a prescription for medicine to block stomach acid.

She had scheduled her two-week post-hospital visit with my partner, who had admitted her to the hospital. She told him her pain was better, and the way she described it fit the heartburn pattern. A special X-ray called a barium swallow confirmed acid irritation of the stomach, so my partner gave her another acid blocker prescription.

Two weeks later her time bomb went off. In mid-January she came to clinic with bad chest pain, and I sent her right up to the hospital. It was her first official heart attack. She had quit smoking a few days before. Trying to change her lifestyle, she had tried to exercise.

A few days later, the cardiologists reopened a cholesterol-plugged artery in her heart. After that she could exercise without chest pain and joined a health club. She lost some weight and stayed off tobacco. I saw her every month or two through the winter, spring and summer, congratulating her at every visit for her progress. She was 44.

She came in for a final visit in August, complaining of chest pain. It fit the pattern of stomach pain rather than heart pain. I ran an EKG on her at that last visit, and it was normal – normal for her, that is; it showed nothing new, and even some improvement. I switched her to an even stronger acid blocker. And I never saw her again.

Ten days after that last appointment with me, Helen had died in her sleep. What probably killed Helen was her heart suddenly jumping into a bad rhythm, that didn’t pump blood forward – sudden cardiac death. We don't have any good way of predicting whose damaged hearts are more likely to do that, or when. I couldn't have diagnosed, predicted, or prevented it.

At the trial, there were some surprises. Helen had quit smoking. But her family and friends hadn't, exposing her to secondhand smoke that can increase the risk of abnormal heart rhythms. And in her last visit with me Helen had said she had been able to work out in the gym for hours without chest pain. But her daughter and a friend testified that Helen could only stay on those exercise machines a few minutes before she had to stop and rest until the chest pain went away.

She lied to me. She was playing a role, the role of a good patient. She was telling me what she thought I wanted to hear. Maybe she wanted to hear me congratulate her again on how well she was doing.

I didn't see through Helen's performance. That was the mistake I made. That was my negligence.

I "won" the case and went back to work. I say it was my first malpractice suit. There hasn't been a second – yet – but I don’t want to get overconfident.

Advice: Always tell the truth to doctors.

Browse for related stories in the index at the very bottom of this page, or read a patient-doctor miscommunication story.

Thanks to Dr. Merilee Karr for the source article in Creative Nonfiction, issue #33, 2007.

How easy it is to be silent: Apology for a surgical error

What does not weigh on Dr. John Riley's conscience is silence. [Names have been changed.] As tempting as it was to tell Thelma Jones and her son that a biopsy was planned of her right lung and that the pneumothorax was the unfortunate outcome of a necessary procedure, John Reilly chose to tell the truth. I admire him for that. I know just how easy it is to be silent.

Many years ago, I witnessed an Ob-Gyn make a terrible mistake during a routine hysterectomy. I stood in the Operating Room retracting a patient's belly while he carelessly hacked out her ovary. I stood next to her hospital bed as he lied to her about his mistake.

"We had to take the right ovary, Gina."

"Why? What happened?"

"Jesus Christ, Gina. It was a mess in there."

"I'm sorry."

She apologized. As if it was her fault that he had butchered her ovary.

He offered no other explanation. Yet I did not speak up when this incident occurred. I was a medical student with my career in front of me; he was an attending surgeon. I participated in the complicity of silence.

Advice: Ask for a clear explanation if a medical procedure has not gone as expected.

Browse for related stories in the index at the very bottom of this page, or read a patient-doctor miscommunication story.

Thanks to Dr. Helena Studer for the source article in issue 33 of Creative Nonfiction.

Different kinds of healing: Elective surgery for quality of life

Question: My patient, a devout Catholic, is considering a risky radical abdominal surgery that can't cure her condition but may extend her life for a year. She says she's okay with either outcome, living longer or dying in the Operating Room. I believe she's sincere, even though her daughter feels she's being talked into the procedure by the surgeon. Now the daughter has asked me to tell her mother how horrible the surgery is and that most patients suffer greatly.

I'm sympathetic to her concerns because I've cared for several patients who underwent this surgery and none of them fully recovered. But it's not my place to explain the risks and benefits of surgery to the patient or to intrude on her relationship with her physician. How should I handle this? -S.N., Wisconsin


Answer by Joy Ufema, RN, MS:
This doesn't sound like a patient who's being coerced into doing something she doesn't want to do. Ironically, if she were to choose an intervention and died soon, the daughter could do a complete turnaround and worry that her mom gave up without pursuing all options.

Explain to the daughter that you can't discuss the odds for recovery because every patient is different. Instead, encourage her to talk with her mother in depth about her beliefs and goals. Offer to sit in on the conversation if they wish. Let the daughter hear her own mother discuss her position as a patient with a serious illness. Then support them both, regardless of the outcome.

Advice to family members who are patient advocates: Educate your loved one about the choices, then let them make the important decisions that affect their lives

Browse for related stories in the index at the very bottom of this page, or read an elective surgery story.

Thanks to Joy Ufema for the source article in the January issue of Nursing 2008.

Vaccines, Autism, and Our Daughter, Hannah

Our daughter, Hannah, developed normally until receiving nine vaccines at once. She immediately developed a fever and encephalopathy, deteriorating into what was diagnosed, based on the Diagnostic and Statistical Manual of Mental Disorders, or DSM IV, as autism.

The federal government, not an "unusual court," made the concession. The decision wasn't careless. It was based on a thorough review of Hannah's records by Health and Human Service doctors.

The National Vaccine Injury Compensation Program does rely on a "preponderance of evidence" standard, which Hannah's case met. It doesn't necessarily compensate families "quickly, generously and fairly." We filed our claim six years ago. Pain and suffering are capped at $250,000, and Hannah has yet to receive compensation.

Dr. Offit's assertion in his recent Op-Ed article that "even five vaccines at once would not place an unusually high burden on a child's immune system" is theory and risky practice for a toddler's developing brain. No one knows if Hannah's mitochondrial dysfunction existed before receiving vaccines. Dr. Offit's claim that Hannah had "already weakened cells" is unfounded.

We support a safe vaccination program against critical infectious diseases. We need straight facts, serious science and speedy answers on these important issues.

Dr. John Poling is a neurologist; Terry Poling is a lawyer and nurse.

According to Dr. Paul Offit, Chief of the infectious diseases division at Children’s Hospital of Philadelphia, in the past few years, parents of 4,800 autistic children have filed claims to the vaccine court which have yet to be heard. Average awards in other recent vaccine cases have been more than $800,000.

Advice to parents of young children: Until the science becomes conclusive, request mercury-free vaccines for your children.

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

Thanks to the Polings for their letter to the editor in today's NY Times.

More triumph than tragedy: Voluntarism by a breast cancer patient

When Georgie Mae Taylor died at age 63 on March 2, the event was more a triumph than tragedy.

When she was diagnosed with breast cancer seven years ago, her prognosis was grim: just a month or so to live.

"I decided to keep on trucking, keep on living," she told a reporter from The Eastern Shore News last fall.

"I had too much to live for."

After giving away much of her jewelry and clothing, Georgie did an about-face and opted for an aggressive course to battle her affliction.

The treatment included more than 300 chemotherapy sessions. She researched her disease and all its treatments.

At that point, she became a patient advocate, her husband, Sam, said.

She also continued the fast-lane pace she enjoyed as an antique collector, activist in Baptist and Methodist church groups, and garden clubber. She was also famous for her wedding bouquets.

"She always stayed busy," Jo Sue Parker, her sister, said.

During her extra lease on life, eight grandchildren were born.

She became a major force in the Shore's Relay for Life, an annual American Cancer Society fundraiser, which received $200,000 last September. She organized a breast cancer support group that continues to grow and encompass other forms of cancer. She volunteered to operate a booth for the local Food Bank.

"The one word to describe her," Sam said, "is inspiration. Anyone down in the dumps over a cancer diagnosis could phone Georgie 24 hours a day. She popped out of bed early in the morning to talk to them because they were scared," he said

Laura Vaughan, director of the Barrier Islands Center in Machipongo, described Georgie as "a miracle amongst us."

"As a cancer survivor myself, she took the fear out of it for me," Laura said.

"She lived such a full life with cancer. All the good attributes of the Eastern Shore came through in her."

During her final week, Laura said, Georgie attended the Barrier Island oyster roast fundraiser and showed up at her garden club meeting.

Advice: Be like Georgie.

Read a story of a plucky breast cancer survivor.

Thanks to Brown Carpenter for the source story in HamptonRoads.com of April 1.