If you were exposed, would you want to know?

This past week we  learned that 15 patients in New England were exposed to a rare infection called Creutzfeldt-Jakob disease (CJD) when neurosurgical instruments contaminated with the infection were used in their care. Each had undergone a brain or spinal surgery in early 2013, and now their future was uncertain.

Creutzfeldt-Jakob disease takes years to develop. Patients exposed to the infection feel fine for years but then they become moodier and forgetful and over the course of months subtle cognitive defects progress to severe dementia. Patients with CJD forget the names and faces of loved ones, they lose the ability to walk, speak, or swallow, and they lapse into a coma that has proven fatal one hundred percent of the time.

When Creutzfeldt-Jakob disease contamination of surgical instruments is discovered, doctors at Catholic Medical Center and other hospitals wonder if it is right to tell patients. In most cases the disease will never occur and there is no effective means of prevention. Even for the unlucky patients who do develop the disease – if any of them do – there is no effective therapy so advance warning gives no extra measure of hope. Worse still, there is no diagnostic test to predict who will escape infection or die, so the only thing patients can do once notified is wait. That means the only real world impact of disclosure, regardless of the eventual outcome, is patient distress. So in this case is knowledge power, or is knowledge just knowledge?

Continue reading my full article at TheAtlantic Health.  It was republished at medpageTODAY's KevinMD.com. 

Doctorstories.org

Medicine is going through tough times. The trusted family doctor who makes house calls has been replaced in the public lore by the benign technician but most recognize we need better models. Public narrative seems like a great way forward. Phil Lederer (@philiplederer) runs a nice website called DoctorStories.org in which he showcases life stories from doctors and other healthcare providers. 

The Campfire by Winslow Homer

What brought people to medicine in the first place? Why do they stay? What was their greatest contribution? Read my contribution and others at doctorstories.org, and tell your own story too.  

The Dignity of a Porn Star: What Was Lacking in Our Response to Cameron Bay

Porn stars all across Fresno were told to put their clothes back on and go home a couple of weeks ago on the news that a 29 year-old adult actress named Cameron Bay tested positive for HIV.

The Internet lit up. News, judgments, and jokes shot left and right in newsrooms as freely as bodily fluids fly on set. 

Something important is lacking though: concern for Ms. Bay. This young woman just learned that she has an incurable and potentially lethal disease. Our first emotion, I think, should be concern. We should commiserate. We should be grateful for our health and hopeful for hers. 

I learned this from Jose*, a patient in my HIV clinic. Jose was a muscular guy who wore tight black shirts and a jet-black goatee. The list of movies in which Jose engaged in unprotected anal sex was long. Very long. None of the titles can be repeated here so let’s just say somebody is making good money dreaming up new variations on the Bareback Mountain theme. 

Read the full article at Scientific American guest blogs.  It was also republished at The Health Care Blog.

NHPR Panel Discussion about Advanced Directives and End-of-Life Planning

It was a thrill to join Laura Knoy of NHPR's "The Exchange" and other guests Todd Bookman (NHPR science reporter), Shawn LaFrance (executive director of the Foundation for Healthy Communities) and Michael Skibbie (Policy Director for the Disabilities Rights Center) for a panel discussion about advanced directives, death panels, end-of-life planning and New Hampshire's inadequate surrogate decision-maker laws. Our gracious host said we were "flooded" with calls - including from NH state senator Peggy Gilmore.

Listen in on our conversation at NHPR. 

The Design of a Medical School Social Justice Curriculum

Well over 100 years have passed since Virchow wrote that “physicians are the natural attorneys of the poor, and social problems fall to a large extent within their jurisdiction.” Since that time, the world’s population has septupled, and billions of people are “trapped in the health conditions of” his era.

As a result, many medical students in the 21st century want to work to decrease health disparities, and increasing numbers of medical graduates indicate they intend to work with people who are often underserved. This groundswell of medical student interest in remedying health disparities joins urgent calls for the integration of specific social justice competencies into medical school curricula and aligns with new considerations and the ranking of the quality of institutions’ “social mission.”

Yet, how can medical students learn about global health and social justice without recapitulating the mistakes of their forebears? 

What skills do they need to be effective in social justice outreach abroad and at home? 

What are physician obligations toward "social justice" if any?

We take on these and additional questions in our new article in Academic Medicine, "The Design of a Medical School Social Justice Curriculum." 

Who should decide: a patient who has been suicidal or her legal guardian?

The team recommended a feeding tube. At first Sasha demurred, pointing to Liz’s refusal. But the psychiatrist clarified that Liz did not have decision-making capacity to refuse the procedure, so we relied upon Sasha. Sasha seemed to understand, and said she didn’t want Liz to starve. She asked what the procedure would entail, and what future steps in Liz’s care would involve. We discussed eventual transfer to a nursing home, and said we doubted Liz would ever care for herself again.

Then the conversation took an unexpected turn. 

Read my whole article at Scientific American guest blogs.

Are churches telling HIV patients to stop treatment?

I asked Bill what his pastor and fellow parishioners thought about his decision to stop HIV treatment. “They totally support me,” he said. “In fact, it was their idea.” His congregation had encouraged him to stay off his HIV medications despite his doubts, to see this revelation through “to the end, whatever may come.”

Bill is not alone in his church’s insistence that welcoming a preventable death is somehow an act of faith, that stoic acceptance of sickness and death are the only road to the conditional love of his Pentecostal brethren. The BBC reported recently that many Pentecostal congregations have advised their parishioners to skip HIV therapy and, like Bill, leave their lives in God’s hands.

Read my full article at The Atlantic - Health.

Great video chat about the story on HuffPost Live with Josh Zepps which was then picked up in HuffPost Religion. Look Ma!

Replace the med school interview with fMRI: a modest proposal

Finding applicants with the potential to have great bedside manners is the real challenge of the admissions process. Many applicants are smart enough to know enough and think clearly enough to become full-fledged physicians. But those academic traits combined with the kind of compassion, resilience and moral reasoning patients need is still rare.

Why not just MRI applicants instead? Check out my guest post at the Scientific American which was republished at The Health Care Blog.