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Emergency Medicine, Ethics, Global Health, Medicine and Society, Patient Care

After Haiyan: Stanford med student makes film about post-typhoon Philippines

After Haiyan: Stanford med student makes film about post-typhoon Philippines

Multi-talented Stanford Medicine student Michael Nedelman has been featured on Scope before for his filmmaking and storytelling abilities. His new film, “After Haiyan: Health narratives in the aftermath of the typhoon,” is a series of vignettes about the November 2013 disaster in the Philippines. The film, which will be released soon, connects socioeconomic and structural issues of access to health in times of crisis.

It was filmed primarily in Tacloban, Leyte, in July and August of 2014, and Nedelman made a follow-up visit in November and December to premiere and promote the project. Despite his busy end-of-school-year schedule, Nedelman answered some questions for me about his work in a recent email exchange.

What was it like filming in the wake of a tragedy? 

Phil Delrosario said it best. He’s the cinematographer and editor I met here at Stanford. Knowing when to turn on the camera was a “huge balancing act” between our drive to document the truth, and our obligation to be compassionate storytellers. We couldn’t ignore the emotional weight of Typhoon Haiyan, and we couldn’t ignore the fact that we weren’t part of the communities we were documenting. So we sought out people who not only wanted to share their stories with us, but who could also provide some insight as to how they wanted those stories to be seen… For one of the videos, Deaf advocates like Noemi Pamintuan-Jara reached out to us first, not the other way around… That was really special for us, to be able to work alongside a community that has been promoting Deaf accessibility and culture long before we ever arrived on the scene. And we had these new partners who could give meaningful feedback on our filmmaking decisions.

Filming in the wake of a tragedy doesn’t mean everything is tragic. The shadow of Haiyan is still there, but there’s also a sense of living in the moment and moving forward. All over the city, you’ll see posters and graffiti that say, “Tindog Tacloban!” (“Rise Tacloban!”) That’s something that really resonated with our team and the ethos of our project. You can’t tell the full story of Tacloban without optimism and resilience.

How does this film link storytelling and health, and what is special about that for you?

When I was first discussing the project with one of the producers, Roxanne Paredes, we asked ourselves a similar question: How would our project add to or nuance the coverage of the typhoon? Right after the storm, Haiyan was all over the news. Tacloban was in survival mode. But months later, after many of those cameras had left, there was a different set of long-term challenges and a focus on recovery. Those were the issues we wanted to explore, which tend to be less covered by the media but still have profound implications for community health and future disaster preparedness. In short, just because the cameras stopped rolling doesn’t mean there weren’t more stories to tell. That really broadened the way in which I think of health stories.

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Ethics, Imaging, Medicine and Society, Neuroscience, Research, Stanford News, Technology

Hidden memories: A bit of coaching allows subjects to cloak memories from fMRI detector

Hidden memories: A bit of coaching allows subjects to cloak memories from fMRI detector

11501949224_dac2b41c91_zImagine the usefulness of knowing if someone is drawing on a memory or experiencing something for the first time. “No, officer, I’ve never seen that person before.” 

That’s possible, using an algorithm that interprets brain scans developed by a team of Stanford researchers led by psychology professor Anthony Wagner, PhD. But according to a Stanford Report articleit’s also possible to fool that same program when subjects are coached to hide their memory.

The program, or decoder, capitalizes on the complexity of memory, which taps many different regions of the brain. They use functional magnetic resonance imaging (fMRI) to view which parts of the brain are active.

Hoping to illustrate the limits of their own creation, the researchers asked 24 study participants to study a series of faces. The next day, they exposed them to some of the same faces mixed with entirely new faces:

“We gave them two very specific strategies: If you remember seeing the face before, conceal your memory of that face by specifically focusing on features of the photo that you hadn’t noticed before, such as the lighting or the contours of the face, anything that’s novel to distract you from attending to the memory,” said Melina Uncapher, PhD, a research scientist in Wagner’s lab. “Likewise, if you see a brand-new face, think of a memory or a person that this face reminds you of and try to generate as much rich detail about that face as you can, which will make your brain look like it’s in a state of remembering.”

With just two minutes of coaching and training, the subjects became proficient at fooling the algorithm: The accuracy of the decoder fell to 50 percent, or no better than a coin-flip decision.

The new study shows that imaging technology alone will not be able to “pull about the truth about memory in all contexts,” Wagner said. And, as pointed out in the article, he “sees [the results] as potentially troubling for the goals of one day using fMRI to judge ‘ground truth’ in law cases.”

Previously: Memory of everyday events may be compromised by sleep apnea, The rechargeable brain: Blood plasma from young mice improves old mice’s memory and learningResearchers explore the minds of man’s best friend using fMRI technology, Using fMRI for lie detection and Brain scan used in court in potential fMRI first
Photo by David Schiersner

Ethics, Health and Fitness, Medicine and Society, Orthopedics, Patient Care, Sports

Thinking through return-to-play decisions in sports medicine

Thinking through return-to-play decisions in sports medicine

2913800550_7fc291c915_zIn an opinion piece appearing in the AMA Journal of Ethics today, two Stanford physicians – Michael Fredericson, MD, and Adam Tenforde, MD – explore the ethics of how doctors should advise patients recovering from an injury.

Consider this scenario, the case which opens the piece:

Jordan is a 17-year-old senior in high school who has been his football team’s star quarterback, led his team to two state championships, and has a real possibility of receiving a full scholarship to a top college sports program next year. In his last session of summer training camp, Jordan took a fierce hit… [an MRI] showed that Jordan had a torn labrum in his right shoulder that would require surgery and months-long recovery, meaning that he would miss the rest of his final season.

[His physiatrist] had known instances in which this particular type of injury ended a quarterback’s athletic career. She had also read about a few cases in which athletes recovered fully from the injury. Since so much of recovery depends on the injured person’s following the rehabilitation and physical therapy plans, [she] wanted Jordan to approach his injury with the optimism that adherence to the plan would enable him to return to athletics. At the same time, she did not want to hold out false hope that might keep Jordan focused exclusively on football when, in the long term, that might not be the best use of his senior year.

The most important part of what we’re trying to convey when treating athletes is that as team physicians our goal is the health and well being of the athlete

When college scholarships and admissions decisions are on the line, a doctor’s recommendations affect more than her patient’s physical health. How to weigh the different interests at stake? Fredericson and Tenforde make clear that medical decisions must prioritize the long-term health of the athlete. When I interviewed him, Fredericson, a professor of orthopedic surgery, director of PM&R Sports Medicine, and team physician for Stanford Athletics, told me:

The most important part of what we’re trying to convey when treating athletes is that as team physicians our goal is the health and well being of the athlete. Ultimately, we are the ones who are trying to protect their health. Sports physicians have gotten a bad rap; people think we’re trying to help coaches, or help athletes at the expense of their overall or long term well being. We might push the process to help try to get them better more quickly, but ultimately we have their long-term best interests in mind.

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Behavioral Science, Ethics, Events, Medicine and Society, Mental Health

Anger: The most evil emotion or a natural impulse?

Anger: The most evil emotion or a natural impulse?

5846841745_f2f620c5d3Anger isn’t good for your health. It spikes your heart rate, exacerbating heart conditions and anxiety. It leaves an ugly residue, a sensation of unease and aggression and it can lead to violence against others or oneself.

But in the west, we have an uneasy relationship with this powerful emotion, said Owen Flanagan, PhD, co-director of the Center of Comparative Philosophy at Duke University and speaker at the annual Meng-Wu lecture hosted by the Stanford Center for Compassion and Altruism Research and Education last week.

In the United States and Europe, some anger is considered justified, even necessary for healing after one is wronged, Flanagan said. It’s natural, just a part of our constitution. An appropriate amount of anger is expected, a sign that you care. Flipping out because your barrista took too long making your latte? Probably not okay. But yelling at a driver who rear-ended you while texting? Certainly.

Not in Asia, Flanagan said. There, in accordance with Buddhist traditions, anger is right up there with hatred as the worst emotion, something that should be eliminated as soon as it arises.

Flanagan said he and other academic colleagues posed a question to the Dalai Llama several years ago: If you find yourself in a public place with a very bad person, like Hitler, before the atrocities have started, what should you do? Westerners would say anger was AOK, as was perhaps even murder. After conferring with his colleagues, the Dalai Llama said yes, murdering Hitler would be justified to prevent a very bad karmic causal chain. But anger? Absolutely not.

One could argue that even Hitler’s behavior was a byproduct of his genes, his upbringing, the surrounding society, Flanagan told the audience.

Flanagan said he still hasn’t figured out his own views toward anger. “Anger is a destructive emotion, but it might be a necessary emotion. I’m still not sure about that.”

But in the U.S., we don’t always live in accordance with our own traditions, Flanagan said. “We give ourselves sloppy permissions all over the place to be very angry people. That’s something that’s just not good.”

To counter anger, Flanagan offers several tips, drawn from both western and eastern traditions. First, embrace an emotion that is incompatible with anger, such as gratitude. Or reflect on your own insignificance and the transitory nature of the harm: This too will pass. “Astronomy is a good antidote to taking yourself too seriously,” Flanagan said.

In a longer term, Seneca suggests that it helps to “live among people who teach the children that anger is always bad.”

But is it even possible to completely eliminate anger? Some argue no, even babies express a form of frustration or discontent that could be a sign of inner anger. Or, we could all be conditioned by society, learning to be angry as soon as we’re born.

Previously: Bright lights breed stronger emotions, study finds, Is it possible to control one’s emotions? and Study suggests emotions may trump mind in matters of self-control while meditating
Photo by katmary

Ethics, In the News, Patient Care, Pediatrics

Study of outcomes for early preemies highlights complex choices for families and doctors

Study of outcomes for early preemies highlights complex choices for families and doctors

3363144800_8c4c7ee6a5_zA tiny fraction of babies born at 22 weeks of gestation survive to childhood without major impairments or disabilities, according to a study recently published in the New England Journal of Medicine. But, although some of these babies can do well, there is variation between hospitals in the rate at which they are resuscitated after birth.

As was widely reported late last week, the results add to the existing debate about providing the earliest-born preemies with intensive medical care. I talked with Henry Lee, MD, a neonatologist at Lucile Packard Children’s Hospital Stanford, to get his take on the new findings. Doctors who work with tiny preemies and their families aren’t surprised by the study’s results, Lee told me, since the generally poor outcomes for 22-week babies are consistent with other studies. But they are carefully considering what to do next.

“We already knew, to a large extent, that there is variation in how different practitioners and hospitals manage patients in this peri-viable range,” Lee said. “Some hospitals tend to be more aggressive at resuscitating and actively treating these babies, others less so.”

The study’s findings highlight that doctors may have difficulty letting parents make the choice about how to handle the birth of a very early preemie, Lee noted. “We’re supposed to be communicating with parents, and they’re supposed to be making an informed decision,” he said. The variation between hospitals suggests that’s not what is actually happening; if parents were deciding what to do, the rate of resuscitation would be more consistent across hospitals. “This data is telling us that we as medical professionals are making the decision for parents, especially at really young gestational ages,” Lee said. “It’s an area that we need to continue to learn to deal with better.” Hospitals also vary in their capacity to care for such babies, he added.

Physicians from several Bay Area hospitals have already begun meeting to discuss their approaches to the earliest-born preemies, he told me. “We might not practice exactly the same, but we want to understand the rationale for what everyone is doing,” Lee said. “If one group is doing something that makes sense, we could learn from them.”

And the study also brings into focus the difficulty of balancing statistics against an individual family’s situation, Lee added. “These larger population studies help us to counsel families, but one thing I always have to say to them is that there’s uncertainty,” he said. “I tell parents that we don’t know what is going to happen to their baby – ultimately their baby is an individual and we don’t know yet. There is that very huge uncertainty.”

Previously: Counseling parents of the earliest-born preemies: A mom and two physicians talk about the challenges, Stanford-led study suggests changes to brain scanning guidelines for preemies and Talk to her (or him): Study shows adult talk to preemies aids development
Photo by Sarah Hopkins

Anesthesiology, Ethics, Medicine and Literature

“Write what you know”: Anesthesiologist-author Rick Novak discusses his debut novel

419jAUWZsYLThe Doctor and Mr. Dylan is a murder mystery, a medical puzzler and a tale about love and parenting. And, it stars Bob Dylan, who may, or may not be, the real Bob Dylan. It’s also the debut novel by Rick Novak, MD, an adjunct clinical associate professor of anesthesiology, perioperative and pain medicine at Stanford.

Novak took the time recently to answer a few questions about the book, writing and his work as a doctor.

How did you become interested in writing?

I’ve enjoyed creative writing since my high-school English classes. My college essay for a successful Harvard application was a short story in which God revealed himself to the patrons of a Minnesota tavern. For the past three years I’ve authored a website called theanesthesiaconsultant.com, which receives 250,000 hits per year from both anesthesia professionals and laypeople interested in the nuances of my specialty.

Why did you choose to write about an anesthesiologist – and do you have much in common with Nico, the primary character, who is also an anesthesiologist?

Wise advice to authors is, “Write what you know.” I’ve been an anesthesiologist for three decades, so I know a great deal about the practice and malpractice of anesthesia. The science and art of anesthesia are fascinating. We enter patients’ lives abruptly, at short notice, and have immense power to save lives and to do harm. The unequal nature of this relationship is fertile ground for storytelling.

The Doctor and Mr. Dylan is fiction, but yes, I do have a lot in common with Nico. I grew up in Hibbing, Minnesota, graduated from Hibbing High School, migrated to Stanford, and became a clinical faculty member here. I grew up 5 blocks from Bob Dylan’s home, am a huge fan of his music, and knew several members of his family. I’m the single father to three boys, and I’ve dealt with the highs and lows of the father-son relationship such as Nico has with Johnny, and the stressors of a failed marriage just as Nico does.

What motivated the plot of your story?

Anesthesiologists have control of dozens of powerful medications, and if misused, they can be lethal. One day I heard someone describe his significant other by saying, “I don’t want to pray that a bus runs her over, but my life would be a lot simpler if one did.” Combining these two ideas led to a plot where a physician seemingly makes use of an anesthetic as a tool to eliminate his troublesome wife. I have an active medical-legal practice of expert witness work, and this experience led me to set the second half of the novel in the courtroom, where tension runs high and mysteries can be posed and solved.

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Big data, Ethics, Genetics, Science Policy, Stanford News

Stanford panel: Big issues will loom when everyone has their genomic sequence on a thumb drive

Stanford panel: Big issues will loom when everyone has their genomic sequence on a thumb drive

When I was a biology grad student in the early 1980s, we used to joke about people who were getting their PhDs by spending six long years sequencing a single gene. They worked around the clock seven days a week – and seven nights, too, sleeping on their lab benches when they slept at all.

A few years later the Human Genome Project came along and sped things up quite a bit. But it still took 13 years and a billion dollars to fully sequence a single human genome.

It’s a different story now. With a one-day, $1,000 genome sequence in sight, a 20-minute, $100 sequence can’t be far off. It appears that within 15 years or so, the average individual’s genomic sequence will be just another lengthy, standard supplemental addition to that person’s electronic medical record.

That raises a lot of questions. Last Saturday, I had the great privilege of asking a few of them to a panel of three tier-one Stanford experts: Mildred Cho, PhD, associate director of the Stanford Center for Biomedical Ethics; Hank Greely, JD, director of the Center for Law and the Biosciences, and Mike Snyder, MD, PhD, chair of Stanford’s genetics department and director of the Center for Genomics and Personalized Medicine. (I was the moderator.)

The panel, titled “Genetic Privacy: The Right (Not) to Know,” was a lively one, part of a day-long Alumni Day event sponsored by the Stanford Medical Center Alumni Association. (Here’s a link to the video above). Cho, Greely and Snyder have their own well-developed perspectives and policy preferences on the utility of mass genomic-sequence availability, and they articulated those views with passion and aplomb.

The 300 people in the audience, most of them doctors, had plenty of questions of their own. Several were ones I’d hoped to ask but hadn’t had time.

By the time I walked away from this consciousness-raising clash of perspectives, newly aware of just how fast the future is coming at us, I had another question: Once everyone has the equivalent of a thumb drive with their complete genome on it, can you imagine a kind of online matchmaking service in which you upload your genome to a server, which then picks out a date or a mate for you? The selection is guided by what you say you’re looking for: short-term mutual attraction, an enduring monogamous relationship, robust offspring … Is that now thinkable?

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Autism, Ethics, Genetics, Medicine and Society, Patient Care

Genetic testing, autism, and “fixing” the pathological body

Genetic testing, autism, and "fixing" the pathological body

2678541254_029f25704b_zHow do we know what is pathological, versus what is normal? It seems obvious until you start thinking philosophically, which was the goal of a panel hosted last week by the Science and Justice Working Group at University of California, Santa Cruz. The event was titled “‘Fixing’ the Pathological Body,” a pun on how fixing can mean both repairing and immobilizing.

An anthropologist, a philosopher, and a geneticist discussed how simple, everyday practices like using particular words or certain tests define a line between pathology and normalcy. That line has a huge impact on our experience as humans.

Matthew Wolfmeyer, PhD, professor of anthropology at UCSC, used the term “multibiologism” to indicate that pathology can be seen as a form of human variation. There are three kinds of bodies, he says: those that need no intervention of social, legal, or medical support to enable a livable life, those that do need such intervention (such as a quadriplegic or someone with severe Alzheimer’s), and those that could have such intervention (anyone from hyperactive kids or insomniacs to those with PTSD or arthritis). American society currently divides this spectrum such that the “no intervention” category is becoming empty and the “could have intervention” category is growing by leaps and bounds. Despite what he calls our “cure ideology” from our Judeo-Christian heritage, the pathologies we recognize are increasingly incurable, whether it be gluten sensitivity or chronic cancer, and must be treated with ongoing therapies.

Kelly Ormond, MS, professor of genetics at Stanford, provides genetic counseling and helps people think about these issues every day. She helps expectant parents face the grueling task of deciding what it means to have a baby who might be labeled disabled, pathological, or normal — how would such a child fit into their life, and are they able and willing to accommodate that? Do they even want the information that genetic tests can offer? When counseling parents, Ormond tries to emphasize the lived experience of a condition instead of its medical aspects. Medical information tends to categorize and stir up preconceived notions, but in everyday life the significance of such designations is more fluid, she said.

Janette Dinishak, PhD, professor of philosophy at UCSC, studies autism. She wants to reframe society’s understanding of people with autism such that those without autism are the ones who are limited.

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AHCJ15, Ethics, Events, Patient Care, Pediatrics, Pregnancy

Counseling parents of the earliest-born preemies: A mom and two physicians talk about the challenges

Counseling parents of the earliest-born preemies: A mom and two physicians talk about the challenges

preemie toesWhen Juniper French was born in April 2011, her mom had been pregnant for 23 weeks and 6 days – a little more than half of a typical 40-week pregnancy. Shortly before her birth, doctors had to try to explain the possible consequences of her very early arrival to her parents.

“Prematurity is a very unusual condition because it can affect any corner of the body or the mind to any degree,” Kelley Benham French, Juniper’s mother, told a group of journalists at the Association of Health Care Journalism 2015 conference this past weekend. French and her husband were informed that, even with intense medical intervention at birth, their daughter had an 80 percent chance of death or morbidity. Not only was that staggering, but their doctors couldn’t be very specific about what this number might mean if Juniper did survive: “We asked, ‘Do you mean life on a ventilator or asthma? Do you mean blindness or a wheelchair?'” French recalled. “They said, ‘We don’t know.'”

These same uncertainties are faced by all parents of babies born near the edge of viability, between 22 and 25 weeks of gestation. French, a reporter, eventually wrote an award-winning series about Juniper for the Tampa Bay Times that explains the swirl of emotions and statistics she and her husband, Tom, had to navigate in deciding to ask their doctors to resuscitate Juniper at birth. As French told the conference attendees, the choice was excruciating; they desperately wanted to be parents but didn’t want their baby to suffer. They wondered if “it might be less selfish to just let her die.”

Two Stanford experts joined French in Friday’s presentation to discuss difficult conversations about very early preemies.

Neonatologist Henry Lee, MD, gave a sampling of the information he must present to parents when he has these conversations as part of his work at Lucile Packard Children’s Hospital Stanford: Not only are these babies at risk of dying, they face daunting early-life medical complications. Lee rattled off a list: retinopathy of prematurity; necrotizing enterocolitis; bronchopulmonary dysplasia; intraventricular hemorrhage. Referring to the last item on this list, he said “You can imagine, talking to a parent, telling them that ‘Your baby is at risk for having bleeding into their brain’ can cause a lot of anxiety. And often this is the patient’s first time meeting this doctor or nurse. They don’t have any relationship, but they’re talking about these weighty matters.”

Stanford obstetrician Amen Ness, MD, added that women in preterm labor are often asked to make critical medical decisions quickly. Do they want steroids to mature the baby’s lungs? Are they OK with receiving a classical c-section to deliver the baby, which produces a large vertical scar that increases the risk of placenta accreta in future pregnancies? How much fetal monitoring do they want?

Most of these decisions would feel more comfortable if the patient had a few days to think things over and could return for later conversations with more questions. “You really need that time but you don’t always have it,” Ness said.

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Ebola, Ethics, Global Health, Stanford News

The Ebola crisis: an ethical balancing act

The Ebola crisis: an ethical balancing act

Ebola in GuineaShould Ebola patients in West Africa be given unproven treatments? How should clinicians decide which patients to treat, given the limited availability of some drugs? Should Ebola patients who are dying be given palliative care to relieve pain and suffering?

These are among the ethical questions addressed in a special issue of the American Journal of Bioethics, devoted to the many challenges involved in caring for patients with Ebola.

“Obviously, the Ebola crisis galvanized lots of different health care professionals and academics, but it was very important to the bioethics community,” David Magnus, PhD, director of the Stanford Center for Biomedical Ethics, told me. “From the very beginning, there were the usual public health ethics. But when the time came to give the scarce drug, ZMapp, to a small number of health care workers, there was a huge amount of controversy.”

“That also led to a major debate on the conduct of clinical trials and whether we should give unproven treatments to patients,” he said. “There’s a very big split in the biomedical ethics community.”

Magnus is editor-in-chief of the monthly journal, which is housed at Stanford. He said the special edition of the journal is particularly relevant now, given the recent launch by the NIH of a clinical trial involving ZMapp. The experimental drug, manufactured by a San Diego, Ca. company, was given to a very small number of clinicians in the United States who had been exposed to Ebola in West Africa.

In the journal, a group of ethicists led by New York University’s Arthur Caplan, PhD, argue that the gold standard in drug testing – the randomized, placebo-controlled trial – may not be the most practical and morally defensible approach in an emergency like the Ebola crisis.

A conventional trial is hard to justify, given that patients in the West were given the drug without any placebo controls; West Africans should be treated no differently. Nor can it be justified if the drug is compared against the usual standards of care in Africa, which may be ineffective and carry a high probability of death. That approach could just engender further mistrust in West African communities, they say. Rather, Caplan and his colleagues argue for an alternative approach – a side-by-side comparison of various experimental drugs to see which one is superior in helping rescue patients.

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