The Patient Safety Blog Bookshelf

Over the last year or so, I've mentioned many books in Patient Safety Blog posts. These might be useful for a course syllabus or reading list:

Addiction, by Dr. Vatsal Thakker

Better: A Surgeon's Notes on Performance, by Dr. Atul Gawande

Broken: My story of addiction and redemption, by William Cope Moyers

Dartmouth Atlas of Healthcare, by Dr. John Wennberg et al

Diabetes Burnout, by Dr. William Polonsky

Fight Your Insurance Company and Win: Secrets of the Insurance Warrior, by Laurie Todd

First Patient, by Dr. Michael Palmer

First Year Parkinson's Disease, by Jackie Hunt Christensen

Havens: Stories of True Community Healing, by Leonard Jason and Martin Perdoux

How Doctors Think, by Dr. Jerome Groopman

Intern: A Doctor's Initiation, by Dr. Sandeep Jauhar

Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia, by Dr. Thomas Graboys and Peter Zheutlin

My Mother, Your Mother, by Dr. Dennis McCullough

My Stroke of Insight, by Jill Bolte Taylor

Navigating the Healthcare Maze: What You Need to Know, by Jeffrey Knott

Nordie's at Noon: The Personal Stories of Four Women "Too Young" for Breast Cancer by Patti Balwanz, Kim Carlos, Jennifer Johnson, and Jana Peters

On Hallowing One's Diminishments, by John Yungblut

Patients beyond Borders, by Josef Woodman

Rapt, by Winifred Gallagher

A Sea of Broken Hearts, by Dr. John James

Snake Oil Science, by R. Barker Bausell

Swimming in a Sea of Death, by David Rieff

To Love What Is, by Alix Kates Shulman

When Illness Goes Public, by Dr. Barron Lerner

When You're Falling, Dive, by Mark Matousek

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.

Susan Sontag's choice for aggressive care

David Rieff's story on his mother, Susan Sontag
What my mother wanted – which was to undergo any treatment, no matter how terrible, that promised a cure for her disease – would probably have been viewed skeptically by a physician schooled in what Dr. Jerome Groopman calls the "bean counting" of evidence-based medicine. But doctors like Nimer and Groopman hold that their mission is to try to treat their patients as their patients want to be treated until doing so can be called with assurance (rather than in terms of probability alone) medically futile.

Obviously, there is a cost to this. In opting for treatment – in her case, a bone-marrow transplant – my mother suffered far more physically than she would have had she opted for palliative care alone. But in honoring her wishes, without for a moment understating the risks, her doctors opted for treating her in the full, human sense of the word.

Advice: Find a doctor who takes to heart your preferences about risks and benefits, and the degree of aggressiveness you want in your care.

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

Thanks to David Rieff for the source story in Sunday's New York Times Magazine, drawn from his book, Swimming in a Sea of Death: A Son's Memoir.

I was supposed to live, at best, 3 years: a myeloma foundation

She had graduated from Harvard Business School, and was on the fast track for a leadership position at Searle, the pharmaceutical giant. For four years, Kathy Giusti oversaw the marketing of Searle’s arthritis drugs. In 1995, at age 37, she was married, and had an 18-month old baby girl. In December that year, seeing her doctor for help in getting pregnant again, she learned she had myeloma, a cancer of plasma cells found in bone marrow.

She met with seven myeloma specialists and received contradictory advice. She ultimately chose the most conservative approach, partly because she greatly wanted another baby, and didn't want toxic drugs to interfere with her conception and pregnancy. "I put a plan together, and I went through the whole I.V.F. program to get pregnant."

By 1997, she had quit her job at Searle, and had given birth to a healthy boy.

The previous summer, she had attended a patient seminar sponsored by the International Myeloma Foundation. The foundation's directors asked her to be on their board. She agreed, and wrote a business plan for them. "But I was challenging them about where they were heading and what they are doing with research and funding research. [They were] getting annoyed with me. So they booted me off the board."

In October 1997, she and her sister held a dinner for wealthy friends near her new home in Connecticut, to raise money for myeloma research. It must have been quite delicious; they raised $450,000. She distributed most of it to research, and used the rest to set up the Multiple Myeloma Research Foundation.

She realized that in order to accelerate the development of new myeloma drugs, she needed to foster greater collaboration between researchers and different academic institutions. In 2002, she decided to assemble a consortium of scientists who would be required to submit their research proposals to a steering committee for approval, and to publish their results jointly. In exchange, the scientists would receive access to a tissue bank of myeloma blood cells and bone marrow, as well as administrative and organizational support for lab tests and clinical trials.

Since 1998, the foundation has raised $92 million. Since 2001, 21 drugs derived in part from research funded by the foundation have entered clinical trials, and eight are now in Phase 2 – a track record that pharmaceutical companies would envy.

Dr. Ken Anderson, Kathy's doctor, says, "Myeloma is now a paradigm for new drug development, because of partnerships that occur between academics, large pharmaceutical companies, small biotech, the FDA, the National Cancer Institute, and foundations. And, frankly, Giusti's foundation has been a catalyst that created the urgency and awareness to make this progress possible."

Kathy had a bone marrow transplant in 2006, and her cancer is in remission.

Advice to people struggling with grave diseases: Take heart from Kathy's example, and help as much as you can.

Browse for related stories in the index at the very bottom of this page, or read a story about a similar visionary nonprofit health entrepreneur hero.

Thanks to Dr. Jerome Groopman for the source article in the Jan. 28 issue of the New Yorker.

The greatest Christmas present ever: Empathetic active listening in diagnosis

Anne Dodge had lost count of all the doctors she had seen over the past
15 years. She guessed it was close to 30 of them.

Anne is in her thirties, with sandy brown hair and soft blue eyes. She grew up in a small town in Massachusetts, one of four sisters. No one had had an illness like hers. Around age 20, she found that food did not agree with her. . Anne lost her appetite and had to force herself to eat; then she'd feel sick and quietly retreat to the bathroom to regurgitate. Anne's health continued to deteriorate, and the past 12 months had been the most miserable of her life. There were also signs that her immune system was failing; she suffered a series of infections, including meningitis. She was hospitalized four times in 2004 in a mental health facility so she could try to gain weight under supervision.

By December, Anne's weight dropped to 82 pounds. Although she said she was forcing down close to 3,000 calories, her internist and her psychiatrist took the steady loss of weight as a sure sign that Anne was not telling the truth.

That day Anne was seeing Dr. Myron Falchuk, a gastroenterologist. He began to question, and listen, and observe, and then to think differently about Anne's case. And by doing so, he saved her life, because for 15 years a key aspect of her illness had been missed.

He had said, at the beginning, with a gentle smile, "let's go back to the beginning. Tell me about when you first didn’t feel good. I want to hear your story, in your own words. She told him the whole story. As she spoke, Dr. Falchuk would nod or interject short phrases: "Uhhuh," "I'm with you," "Go on."

Dr. Falchuk had begun their conversation with a general, open-ended question about when she first began to feel ill. "The goal of a physician is to get to the story, and to do so he has to understand the patient's emotions," Dr. Roter said. Dr. Falchuk immediately discerned emotions in Anne that would inhibit her from telling her tale. He tried to put her at ease by responding sympathetically to her history. He engaged her by indicating that he was listening actively, that he wanted to hear more. His simple interjections — "uh-huh, I'm with you, go on”"— implied to Anne Dodge that what she was saying was important to him.

A month later, she said he'd given her the greatest Christmas present ever – an accurate diagnosis. She had gained nearly 12 pounds. And she dared to think that maybe one day she would be, as she put it, "whole" again.

His questions, exam, and tests had revealed that she had celiac disease. This is an autoimmune disorder, in essence an allergy to gluten, a primary component of many grains. Once believed to be rare, the malady, also called celiac sprue, is now recognized more frequently thanks to sophisticated diagnostic tests.

Advice to people with puzzling symptoms: Find a doctor who will hear your whole story.

Read another diagnostician’s active listening story, or read the source, Dr. Jerome Groopman's newest book, How Doctors Think.

Familiarity breeds conclusions: Misdiagnosis of a rare disease

A Boston couple adopted a Vietnamese baby girl, Shira Stein (a pseudonym). Before leaving Vietnam, Shira was coughing. On landing, she seemed dehydrated, but refused to drink. Her new parents brought her to a Harvard teaching hospital the next day, where she was admitted to the intensive care unit (ICU) with severe pneumonia. Doctors found five potentially lethal different infections, which implied an immune system deficiency. The doctors concluded she had severe combined immunodeficiency disorder (SCID)—an inherited condition that is extremely rare in girls.

Doctors at the hospital were very familiar with SCID and similar genetic abnormalities. But Shira’s mother thought otherwise. Week after week, she remained certain that Shira would live. The doctors suggested a bone marrow transplant. Shira’s mother conducted her own research into SCID, and doubted the doctors’ diagnosis. Instead, she suspected that Shira had a nutritional deficiency. Though immune tests had shown Shira had few T cells, her mother insisted that doctors retest her. Shira’s T cells were normal; she did not have SCID. The bone marrow transplant might well have killed her.

Advice to patient advocates: Respectfully ask the doctor what other diagnosis might account for the symptoms.

Read another misdiagnosis story, or read the source: Dr. Jerome Groopman’s new book, How Doctors Think, as reviewed by Michael Crichton in Sunday’s NY Times Book Review.

If hip ain’t broke, don’t fix it: A near miss diagnosis

Sofia (not her real name) is an active 83-year old girlfriend and grandmother of four, an ex-skiier from the days when young women didn’t ski. Back then, she had broken her leg on the ski slopes. Now, with no reason last Friday, she suddenly had developed excruciating pain while walking.

She called her doctor, who had her come in to see a colleague who was covering for him while he was out. The covering doctor admitted her immediately to the local community hospital in suburban Connecticut. There, based on her X-rays, a surgeon prepared to operate the next day on her hip fracture. The surgeon planned to install three screws in her right hip to stabilize it.

Sofia’s family prepared for a difficult operation and a lengthy and painful recuperation. Then, suddenly, the next day, they received a phone call: there was no hip fracture. Two of the three X-rays had found nothing, and the third had found a line suggesting a possible fracture. The surgeon had ordered an MRI, which clearly found no fracture. Sofia scooted out of there as fast as she could.

X-ray interpretation is very subjective. Radiologists will disagree on about a fifth of all Xray films, or more, according to Dr. Jerome Groopman on Wednesday on National Public Radio.

Advice: If an X-ray film is ambiguous, ask for a second opinion, or for some other kind of test, to corroborate it. And, Sofia adds, Don’t get sick on a weekend.

Read another misdiagnosis story.

It turned out to be a few dozen: A misdiagnosis

Dr. H was working in the emergency room of a hospital on a Navajo reservation. Dozens of people had recently come to the hospital suffering from viral pneumonia. Blanche Begaye (a pseudonym), a Navajo woman in her sixties, came to the emergency room because she was having trouble breathing. She is a compact woman with long gray hair, worn in a bun. She told the doctor that she had begun to feel unwell a few days earlier. Thinking she had a bad cold, she had drunk orange juice and tea, and taken a few aspirin. Now her symptoms had worsened. She now had a slight fever, and was breathing at almost twice the normal rate. Her lungs sounded clear. A chest X-ray and a lab test of her white blood cell count made the flu or pneumonia unlikely.

However, her blood had become slightly acidic, which can occur in the case of a major infection. The doctor told Blanche that he thought she had “subclinical pneumonia”—an early stage of the infection, as the virus had not yet affected her lungs in a way that would show up on the chest X-ray. He ordered her to be admitted to the hospital.

A few minutes later, another doctor discovered that Blanche actually had aspirin poisoning. She was an absolutely classic case—the rapid breathing, the shift in her blood electrolytes.

Dr. H. had misdiagnosed her because the widespread viral pneumonia he had been seeing was uppermost in his mind. Rather than try to integrate all the information he had about her illness, he had focused on the symptoms that she shared with other patients he had seen: her fever, her rapid breathing, and the acidity of her blood. He dismissed the data that contradicted his diagnosis.

When he had asked whether she had taken any medication, including over-the-counter drugs, she had replied, “A few aspirin.” Dr. H. explained, “I didn’t define with her what ‘a few’ meant.” It turned out to be several dozen.

Advice for patients and advocates: Prepare a summary of your symptoms for the doctor, and be specific. If Blanche had specified the number of aspirin she had taken, she would have made it much easier for the doctor to diagnose. The doctor is on your team; treat him that way, and help him do right by you.

Read another story of a preventable adverse reaction, or read Dr. Groopman’s article in the New Yorker.

Why Did I Miss It?: A misdiagnosis

The Emergency Room doctor's story:

Evan McKinley (not his real name) was hiking when he felt a sharp pain in his chest. He was a forest ranger in his early forties, trim and extremely fit. He had felt discomfort in his chest for several days, but this was more severe: it hurt each time he took a breath. He decided to see a doctor in a nearby hospital’s emergency room.

The emergency room doctor noted that McKinley had never smoked or been overweight; had no family history of heart attack, stroke, or diabetes; and was under no particular stress. His family life was fine, he said, and he loved his job. His blood pressure, pulse, lungs and heart appeared normal when the doctor examined him, and an electrocardiagram (EKG), chest X-ray, and blood tests also seemed normal. The emergency room doctor concluded that McKinley must have a muscle strain, and told him not to worry about the chest pain.

The next morning, McKinley had a heart attack (an acute myocardial infarction) that could have cost him his life. The doctor later explained, “Why did I miss it? I didn’t miss it because of any egregious behavior, or negligence. I missed it because my thinking was overly influenced by how healthy this man looked, and the absence of risk factors.”

Emergency room doctors have a particularly difficult diagnostic challenge because they often have very little information on a patient’s history.

Advice to patients: Keep your personal health information with you at all times. If you have to go to the E.R. with a condition that is difficult to diagnose, it might help the doctor save your life.

Read another emergency room story. Or read the full article on this by Dr. Jerome Groopman in the New Yorker.