Atul Gawande, The New Yorker

By 2010, Bill Haynes had spent almost four decades under attack from the inside of his skull. He was fifty-seven years old, and he suffered from severe migraines that felt as if a drill were working behind his eyes, across his forehead, and down the back of his head and neck. They left him nauseated, causing him to vomit every half hour for up to eighteen hours. He’d spend a day and a half in bed, and then another day stumbling through sentences. The pain would gradually subside, but often not entirely. And after a few days a new attack would begin.

Haynes (I’ve changed his name, at his request) had his first migraine at the age of nineteen. It came on suddenly, while he was driving. He pulled over, opened the door, and threw up in someone’s yard. At first, the attacks were infrequent and lasted only a few hours. But by the time he was thirty, married, and working in construction management in London, where his family was from, they were coming weekly, usually on the weekends. A few years later, he began to get the attacks at work as well. full article

Articolo di Abraar Karan, MD su Journal of General Internal Medicine

A third year medical student at the time, I was part of the clinical team that cared for Mrs. Eleanor during the last weeks of her life. She was a woman who had enjoyed much in her days, having raised two ambitious and successful daughters, but had suffered just the same, if not more, from disease. Her scleroderma had made eating food a daily obstacle, and had tightened her skin years beyond her age. A stroke had left half of her body paralyzed permanently, and her idiopathic pulmonary fibrosis (IPF) had transformed her lungs into a desert of dry, Velcro-like crackles. For several months, she received most of her nutrition from a peripherally inserted central catheter (PICC), a thin tube that dutifully delivered her daily proteins, fats, carbohydrates, and vitamins. That same thin, dutiful tube was the reason Mrs. Eleanor and I would first meet.

Our initial work-up revealed that she had developed an infection of her PICC line and a broad-spectrum antibiotic regimen was started that night. She would continue to spike fevers intermittently for the next few days, and we would later be surprised to find an atypical pneumonia hiding behind the haze of her IPF which would send her to the intensive care unit.

Mrs. Eleanor taught me more about being a doctor than I could appreciate at the time. Through her diseases, I learned how to treat a line infection; how to recognize IPF on physical exam; how to spot an atypical pneumonia on radiographs. And no doubt, this was important. But I learned that our ability to care—our call to be there for our patients—is not static. It changes with our patients’ need for us, both physically and emotionally, and sometimes, some patients need us more than others. As physicians, we need to be able to recognize when they do. continua a leggere

Articolo di David Lee Scher su KevinMD

Online communities are now becoming a rich source of information gleaned from their discussions.  This information will be increasingly used for both clinical and commercial purposes. I will touch on themes which are universal to online health communities.  For a discussion citing specific examples, I would refer you to an excellent post by David Shaywitz.  Physicians have expressed concerns about online communities.  If appropriately conducted, like social media in general, I don’t believe these are barriers to acceptance or participation.

1.  OPCs provide education.  While surveys show that most people still prefer to go to a physician to receive a diagnosis for signs or symptoms, many seek a diagnosis online.  One should follow some helpful hints about seeking information online.  One interesting study found that it is the information seeking effectiveness rather than the social support which affects patient’s perceived empathy in online health communities run by healthcare organizations.  One might think that a similar study conducted on social media sites would have the opposite result (see below).  While confidentiality and accuracy of information are legitimate concerns, as long as the participant is aware of these issues, useful information can be provided via OPCs, especially if physicians and other providers are members.

2.  OPCs provide emotional support.  Although OPCs have been touted as providing emotional support, few studies have been conducted in this arena.  One study of 528 patients with breast cancer, arthritis, and fibromyalgia who participated in OPCs demonstrated patient empowerment The empowering outcomes that were experienced to the strongest degree were “being better informed” and “enhanced social well-being.” No significant differences in empowering outcomes between diagnostic groups were found.  Another study, utilizing sentiment analysis and natural language processing techniques is being conducted to determine the various strength of emotions in online discussions and to compare emotional status of men vs women, patients vs caregivers and inquirer vs responders.

3.  OPCs provide other resources.  OPCs whether affiliated or not with healthcare systems or non-profit organizations often (and should if they are good) provide links to commercial, governmental, health and other support services. In addition, community members themselves might offer even more accurate and appropriate first-hand advice regarding these resources.  Logistical (living arrangements, medical and surgical equipment), financial, communication, legal, and other advocacy concerns are commonly addressed in OPC discussions and websites. continua a leggere

In 2000, Charon founded the Program in Narrative Medicine at the Columbia University College of Physicians and Surgeons to teach future doctors how to elicit, interpret, and act upon the stories of their patients. The skills came through rigorous training in close reading, attentive listening, and reflective writing on stories of illness. By studying how narratives work, doctors could build trust, develop empathy, and foster a sense of shared responsibility in a patient’s health. An article in the March 2011 issue of Academic Medicine described an experiment that followed 891 diabetic patients for three years to see if their health outcomes related to their physicians’ empathy levels, which was measured in part by “an understanding of the patient’s experiences, concerns, and perspectives.” The results showed “the likelihood of good control [of diabetes] was significantly greater in the patients of physicians with high empathy scores than in the patients of physicians with low scores.”

“Stories are complicated things. They do not relinquish their meanings easily,” Charon says. “By teaching clinicians how stories work, what happens to their tellers and listeners, and where stories hide their news—in form, in metaphor, in mood, in time and space—we enable them to enter the narrative worlds described by their patients. So clinicians can receive what their patients reveal about their lives and health, leading to accurate clinical diagnoses and personal recognition. They hear in depth what their colleagues report about their patients. They even come to be more forcefully aware of their own interior voices in self-awareness.”

Since receiving $185,000 from NEH in 2003, Charon and a group of multidisciplinary scholars and clinicians wrote a textbook in narrative medicine published by Oxford University Press, and have influenced medical education and clinical practices across the United States and around the world. Narrative medicine curricula and projects can now be found in the United States, Canada, Europe, Latin America, the Middle East, and Australia. Going beyond physician training, workshops regularly attract nurses, social workers, mental health professionals, chaplains, and academics. In 2009, to fulfill demand for training, Columbia inaugurated a Master of Science in Narrative Medicine. To reach those who cannot move to New York for a year, an online Certification of Professional Achievement in Narrative Medicine is in the pipeline.

Charon acknowledges time with patients is often limited, making narrative medicine training a vital component. “The clinician has to be expertly trained to hear and register and interpret accurately everything that a patient might say. We cannot afford to squander one word or one piece of evidence. Narrative medicine training strengthens the listener’s capacity and speed and accuracy in receiving what their patients want them to know.”

National Endowment for the Humanities