Medicine and Society

My sister, Cathleen, recently passed away. She had been in a coma for nearly a year from an accidental fall while visiting her daughter in New York. She lay on a sidewalk after apparently tumbling down the stairs and bled out for nearly 20 minutes until an ambulance arrived. She never regained consciousness.

Many, many times over the past year I wondered what she would have wanted if she had known of her cruel predicament. It was hard to imagine that a woman whose credo was ‘live, live, live’ would have wanted to waste away in a nursing home unconscious with little chance of recovery. Yet she was a fighter. Would she have wanted to grasp for every final bit of air before she breathed her last? Or at some point would she have wanted to just die peacefully?

I never had a conversation with my sister about end-of-life matters. Thankfully I also never had to make any fateful decisions since I wasn’t her legal guardian. Her husband and two daughters were ultimate authorities. But the question still gnaws at me even today, several weeks after her death. What would she have wanted? And in that time, I’ve thought a lot about what I would want if I were in that situation.

Ellen Goodman, the Pulitzer Prize winning columnist from the Boston Globe, never had a conversation with her mother about the end of life either. In the last years of her mother’s life, Goodman found herself swirling in a fog of decisions. They were basic decisions about care, treatment and survival - decisions that her mother was incapable of making:

In the last year of my mom’s life, she was no longer able to decide what she wanted for dinner, let alone what she wanted for medical treatment. So the decisions fell to me. Another bone marrow biopsy? A spinal tap? Pain treatment? Antibiotics? I was faced with cascading decisions for which I was wholly unprepared. After all the years I had written about these issues, I was still blindsided by the inevitable.

After her mother’s death, having keenly observed numerous great social movements throughout her years of reporting, Goodman wanted to create another movement. And so The Conversation Project - an initiative “dedicated to helping people talk about their wishes for end-of-life care” - was born.

I spoke with Goodman for a 1:2:1 podcast when she was out west to evangelize her project and to meet with VJ Periyakoil, MD, director of Stanford’s Palliative Care Education and Training. As a great journalist Goodman knows how to communicate, and she articulately laid out why The Conversation Project is landing at the right moment to launch another historical social movement.

Previously: Talking about a loved one’s end-of-life wishes, The importance of patient-doctor end-of-life discussions, KQED health program focuses on end-of-life care and Facing mortality
Photo in featured entry box by Alyssa L. Miller

A million years ago (all the way back in 2006!) I wrote an article for Stanford Medicine magazine about genetic technologies and the eugenics movement in this country during the first part of the 1900s. I still remember it as one of the most fascinating of my articles to research, demanding as it did that I speak with a variety of geneticists and ethicists about the increasing control that humans have over their genetic destiny.

When, last year, I had the privilege of writing about Stanford biophysicist Stephen Quake, PhD, and his work on whole-genome sequencing of fetuses before birth, I couldn’t help but remember that article of yore. What are we getting ourselves into?

Now MIT Technology Review has recognized whole-genome fetal sequencing as one of its “10 Breakthrough Technologies 2013.” Accompanying the designation is an in-depth review of the technology and its implications - which are far more complex than I could have imagined six years ago. The article contains comments from several experts, including Stanford law professor and bioethicist Hank Greely, JD, and Quake:

Quake says proving that a full genome readout is possible was the “logical extension” of the underlying technology. Yet what’s much less clear to Quake and others is whether a universal DNA test will ever become important or routine in medicine, as the more targeted test for Down syndrome has become. “We did it as an academic exercise, just for the hell of it,” he says. “But if you ask me, ‘Are we going to know the genomes of children at birth?’ I’d ask you, ‘Why?’ I get stuck on the why.” Quake says he’s now refining the technology so that it could be used to inexpensively pull out information on just the most medically important genes.

In my opinion, experts are right to consider the impact of this type of technology before it becomes commonplace. The ethical implications of parents learning their child’s genome sequence within a few weeks of conception - and of possibly using that information to make decisions about the pregnancy’s outcome - are substantial. Thankfully, some really smart people have been asking these questions in one form or another for years, even though the answers seem to end up more grey than black and white. From that ancient article I wrote six years ago:

For example, even though sex selection of embryos fertilized in vitro has many people up in arms, there’s no evidence that it’s on track to alter the gender balance in this country: Boys and girls are nearly equally sought after, says [medical geneticist and associate chair of pediatrics Eugene Hoyme, MD]. And although some parents will terminate a pregnancy if the fetus has a genetic or developmental problem that they feel isn’t compatible with a meaningful life, different families draw this line at dramatically different points in the sand. For some, it’s too much to consider having a child with Down syndrome. For others it’s important to sustain life as long as possible regardless of the severity of the condition. Still others might choose to have a child as similar to them as possible, down to sharing disabilities such as deafness.

“Eugenics is here now,” says Stanford bioethicist David Magnus, PhD. “So what? We allow parents to have virtually unlimited control over what school their child attends, what church they go to and how much exercise they get. All of these things have a much bigger impact on a child’s future than the limited genetic choices available to us now. As long as these are safe and effective, why not give parents this option as well?”

Previously: New techniques to diagnose disease in a fetus, Better know a bioengineer: Stephen Quake and Stanford bioethicists discuss pro, cons of biotech patents
Photo by paparutzi

A position paper recently released by the American College of Physicians (ACP) and the Federation of State Medical Boards (FSMB) urges health-care providers to carefully consider their actions when using social media or other forms of electronic communication. From a post today on the news@JAMA blog:

To help physicians use social media and other digital communication tools in ways that are more beneficial and less likely to cause harm, the ACP and FSMB produced the current position paper. The paper emphasizes the importance of following the same ethical standards for maintaining the physician-patient relationship, confidentiality, patient privacy, and respect for individuals online or offline. It also recommended that physicians:

• Create separate personal and professional accounts for social media and other interactions online.
• Use e-mail only to communicate with patients with whom they have an established physician-patient relationship and only with proper patient consent.
• Manage their online reputation by periodically searching for their name and creating a profile page of information that will likely be the first item to come up in such a search.
• Be aware that online comments can have lasting effects on a career.

Authors of the paper note in their conclusion that digital communication offers both opportunities and challenges for practitioners, trainees and medical students and the conversation about how health-care providers should use social media and online networks to connect with patients is only just beginning.

[These tools] offer innovative ways for physicians to interact with patients and positively affect the health of communities, but the tenets of professionalism and of the patient–physician relationship should govern these interactions. Institutions should have policies in place on the uses of digital media. Education about the ethical and professional use of these tools is critical to maintaining a respectful and safe environment for patients, the public, and physicians. As patients continue to turn to the Web for health care advice, physicians should maintain a professional presence and direct patients to reputable sources of information.

…

The ACP and the FSMB recognize that emerging technology and societal trends will continue to change the landscape of social media and social networking and how Web sites are used by patients and physicians will evolve over time. These guidelines are meant to be a starting point, and they will need to be modified and adapted as technology advances and best practices emerge.

Previously: How, exactly, can Twitter benefit physicians?, How can physicians manage their online persona? KevinMD offers guidance, 33Charts’ Bryan Vartabedian talks about physician blogging and A guide to the social web for physicians

Ever wonder - say, while sitting quietly in a concert hall or screaming your lungs out in a crowded ampitheater - whether the musical experience you’re having is anything like that of the person three seats up or three sheets to the wind on your right?

A partial answer is in: Our brains process music in pretty much the same way, providing it’s got the requisite combination of components (rhythm, melody, harmony, etc.), according to Stanford neuroscientist Vinod Menon, PhD. In a just-published study, Menon’s group monitored several healthy peoples’ brains while these subjects listened to the same piece of music. As the music played on, activity in a broadly distributed network of neuroanatomically connected brain areas waxed and waned very similarly for each listener. This synchrony among individual responses was absent when participants listened to “pseudomusic” stripped of either rhythmic or tonal characteristics.

The inter-subject synchronization extended to the brain’s movement-planning zone. Evolution, it seems, has designed us this way. As I wrote in my release about the study:

[O]ur brains respond naturally to musical stimulation by foreshadowing movements that typically accompany music listening: clapping, dancing, marching, singing or head-bobbing. The apparently similar activation patterns among normal individuals make it more likely our movements will be socially coordinated.

It’s easy to imagine the survival value of coordinated movement in response to auditory cues. Hunting, gathering, warmaking - all benefit from choreography. That would objectively explain how people who run, shout and pump their fists in synch might win the evolutionary race.

But about the subjective aspect of this synchronization, I’m not so sure.

Look. It’s important that our brains respond similarly to identical stimuli. But what about our minds? In the house of mirrors that is our consciousness, how can we know whether music sounds the same, or color looks the same, to different people?

This takes me back to long ago when, as a philosophy major at the University of Wisconsin, I flunked a course in epistemology. That’s the philosophy of what we know and how we know it, and what we think we know that, actually, we don’t. Turns out I didn’t know much.

One day, the professor - a tweedy, pipe-puffing Princeton man who paced the room in an elbow-patch-bedecked jacket - shouted to the motley assortment of assembled esistentialist ectomorphs: “I PROPOSE. THAT. WHEN I SAY: ‘BLUE!’ ALL OF YOU. SEE. EXACTLY. THE SAME. COLOR!!!”

He paused. “Refute. That. Hypothesis,” he snarled, taking a toke from his pugnacious pipe.

I didn’t raise my hand. It raised itself. He called on me. “I see the same color slightly differently with each eye,” I said, illustrating my claim with alternating winks of my left and right eye. Seemed like a slam-dunk to this Milwaukee boy. (It also happened to be true.)

He glared at me, cross-examined me fiendishly for five long minutes and, striding to the blackboard (I did tell you this was long ago), multiplied the number of minutes we had dueled by the dwindled number of my classmates and thundered: “You’ve wasted 45 student-minutes of class time!”

It was right about then that I started thinking maybe I should switch to science.

So, what is “music,” really? Well, we don’t really know. But whatever it is, it makes us wanna shout, kick our heels up and shout, throw our hands up and shout, throw our heads back and shout.

Previously: New research tracks “math anxiety” in the brain, Why memory and math don’t mix: They require opposing states of the same circuitry and Can playing familiar music boost cognitive response among patients with brain damage?
Photo by gilmorec

Whether it’s at a party or in the grocery store aisle, doctors have always been faced with the challenge of patients asking them medical questions outside of the office setting. But now that more physicians are using social media, the question of how to handle medical inquiries in the digital space is becoming an increasing concern.

In this TEDxNijmegen 2013 video, Bertalan Mesko, MD, PhD, discusses using online communication tools to create medical social networks and the challenges in harnessing these communities to crowdsource clinical questions. Pointing to the example of comedian Conan O’Brien jokingly asking his Twitter followers for dermatology advice, Mesko notes that social media can yield misleading medical information and warns, “Crowdsourcing in medicine only works if you know your communities.” Watch Mesko’s full talk to learn more about how he effectively uses online networks to share trusted medical information and why curation is imperative when it comes to crowdsourcing health-care questions.

Via @StanfordMedX
Previously: How, exactly, can Twitter benefit physicians?, How can physicians manage their online persona? KevinMD offers guidance, 33Charts’ Bryan Vartabedian talks about physician blogging, A guide to the social web for physicians and Physician 2.0: Do doctors risk becoming irrelevant if they ignore social media?

Tonight, Stanford will host a screening of a new documentary titled “Extreme By Design.” The film chronicles the story of three groups of students from the Design for Extreme Affordability course as they create innovative products and services to solve problems in developing countries.

The teams featured in the film, which are composed of business, engineering and medical students, are working on three distinct projects: developing a breathing device to keep infants in Bangladesh from dying of pneumonia, creating an IV-infusion device for Bengali hospital patients and designing a new method for storing drinking water for Indonesian villagers. The documentary begins on the first day of the Design for Extreme Affordability class and concludes a year later when one group returns to Asia to test their project in the field amid plans to launch a start-up company.

Below, producer and co-director Ralph King discusses the catalyst for making the film, which will air later this year on PBS, and what impact he hopes it will have on audiences.

What inspired you to make a film about the Design for Extreme Affordability course?

I first heard about [the course] while playing squash with a Stanford undergrad who applied, but hadn’t gotten in. As a result, he and a few friends planned to go to a village in Mexico to investigate local needs and design some kind of product for them. I was struck by his gumption and the motivating effect of the course. I figured that for those students who did get in to the course it must be a powerful experience. I confirmed this during the next six months that I spent auditing the course. I travelled to Myanmar with one of the student teams and had a moment of self-discovery there that I will never forget. Once it became clear that many of the Extreme students had had similar moments, I decided I had to try to capture those moments on film. That was my inspiration, but of course the film would not be what it is without my team, co-director and executive producer Michael Schwarz, executive producer Kiki Kapany, and a host of others.

How did you select which teams to feature in the film?

We started by interviewing all 40 students before the class started. From these, we picked a dozen or so contenders because of their openness, background and comfort in front of a camera. We followed most of them through the first quarter of the course. Then once they chose their international projects, we narrowed the field to half a dozen students on four teams. We sent camera crews to three locations simultaneously — Bangladesh, Indonesia, and an Arizona Apache reservation — to cover their field research during spring break, and continued to follow the four teams through the course’s second quarter. In the editing room, we made the final cut to three teams because their stories were most compelling.

The overarching narrative of the film focuses on a group of students determined to build a better world through the entrepreneurial process. But what can it teach us about why global health is important beyond those living in developing countries?

In the film, the students use the creative process of Design Thinking to find solutions to seemingly impossible problems, some of which are health-care related. There are many aspects of health care right here in the U.S. that can benefit enormously from the application of Design Thinking and, in fact, several courses at Stanford do just that.

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I’m not sure why my parents were surprised when I told them that I was applying to go into family medicine. It seemed like a logical transition after spending six years working in public health and primary care before medical school, but from the perspective of Taiwanese immigrant parents, I couldn’t have made a more absurd career choice. I was confronted with comments such as, “Most people choose careers to make money - why aren’t you?” Even more jolting was when they asked, “Why are you throwing away years of hard work and accomplishments?” I was flabbergasted by the line of questioning, but they’re my parents, so I had to answer the fundamental question - why family medicine?

For me, the answer is simple: I went into medicine to improve the health of my community and our society, and when I think about the most pressing health issues facing our nation, it’s preventable lifestyle disease. According to the Centers for Disease Control and Prevention, more than 75 percent of our health-care costs and 7/10 of deaths stem from chronic diseases that are largely preventable.

The potential for primary care to fix our society’s biggest health-care problem and to have a real impact on overall population health is why I’m choosing to go into this field

As a medical profession, we’ve largely been unsuccessful at getting people to engage in healthy behaviors. Luckily that’s where family medicine doctors are uniquely positioned to succeed. For one, the family physician has the breadth of training to serve everyone in a community, and in doing so, can influence community behavior as a whole. This approach is vitally important since lifestyle choices are never made in the clinic; they’re made in communities based on social norms set by families and peers.

Second, as I’ve learned through my own journey of overcoming obesity by losing 40 pounds in the past year, so much of one’s ability to implement healthy lifestyles hinges on one’s sense of self-efficacy. Again, that’s where the family physician comes in. A family physician has the benefit of deep interpersonal relationships developed through continuity of care to more effectively cheerlead and coach a patient to success. If executed correctly, family medicine has the potential to succeed in promoting healthy lifestyles, improving community health, and actually preventing disease in ways we haven’t been able to before.

The potential for primary care to fix our society’s biggest health-care problem and to have a real impact on overall population health is why I’m choosing to go into this field. Increasingly, policy makers are turning towards primary care to fix a health-care system that’s becoming more expensive than we as a society can afford. As that happens, I want to be at the front lines leading the charge and developing impactful solutions.

When I told my parents this, their response was, “There are already a lot of smart people who trying to fix this problem and unable to find an answer - so what makes you think you can?” In essence, they don’t think I’m smart enough for family medicine. The problem that primary care has been charged to solve is so big that my parents don’t think I can do it.

Maybe my parents are right, but that won’t stop me from trying. Ignoring the issue doesn’t make it any less urgent. To communicate this to my parents, I responded with a Chinese proverb they taught me long ago, “Plugging up your ears so you don’t hear the fire alarm doesn’t mean there isn’t a fire.”

Raymond Tsai is a fourth-year Stanford medical student who is going into family medicine. (He finds out tomorrow, on Match Day, where he will be doing his residency next year.) He chronicles his journey to adopt a healthy lifestyle on his personal blog.

Photo in featured entry box by jasleen_kaur

Video games, which critics say promote sedentary behavior and can glamorize violence, are often associated with their negative health effects. But a piece on Discover magazine’s Crux blog offers an overview of scientific evidence suggesting that gaming could be helpful to a diverse range of patients, including people recovering from severe burns, teens battling cancer, and, according to a new findings, individuals diagnosed with dyslexia. According to the article:

…[A] relatively new branch of science is focusing on the therapeutic aspects of video games. This new generation of researchers who have grown up with video games are starting to use their unique mix of skills to look into the possibility of improving people’s lives through gaming.

…

A study released today finds that video games can be therapeutic in what first seems like an unlikely context: treating dyslexia. Researchers tested the reading and attentional skills of kids with dyslexia before and after playing video games over the course of nine separate 80-minute sessions. They found that action video games, specifically, left the kids able to read faster and better able to focus their attention. In fact, those 12 total hours of video games play did just as much, or more, for reading skills than demanding traditional reading therapies.

Attention and reading skills probably go hand in hand, the researchers say. “Visual attention deficits are surprisingly way more predictive of future reading disorders than are language abilities at the prereading stage,” said study author Andrea Facoetti of the University of Padua in Italy. By improving visual attention, then, games can address this root cause of dyslexia.

Previously: O’Reilly Radar Q&A looks at how games can improve health, Can playing Tetris reduce flashbacks and aid in the treatment of PTSD?, Study shows gaming may be helpful in treating teen depression, Gaming for good: Video games designed to heal and Can video games improve memory, boost brain power?
Photo by Marco Arment

For those doctors who assume Twitter isn’t for them, this blog entry from a physician-in-training may be of interest. In it, Texas medical student Brittany Chan breaks down how she uses the social-media tool and describes how it has enriched her life and made her more knowledgeable and confident:

As a medical student and future pediatrician, I follow accounts of official medical associations, such as the AAP (@AmerAcadPeds) and AAMC (@AAMCToday), leading medical journals, including JAMA (@JAMA_current) and The Lancet (@TheLancet), as well as several different kinds of physicians who frequently tweet interesting new articles.

I first learned about last year’s pertussis epidemic in Seattle on Twitter, and have followed tweets about this year’s flu throughout flu season. I frequently stumble upon studies that may help me in practice; last week I learned that cefdinir and iron-supplemented infant formulas may cause non-bloody red stool when taken together…

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I follow people who tweet about things that interest me, both medically related and not. As a medical student, I’ve used Twitter as a study tool, asking questions and gleaning knowledge from physicians, residents, and other students. I listen and converse in various tweet chats, such as the mobile health (#mhealth), healthcare social media (#hcsm), and medical education (#meded) chats. I hear patients share their stories and follow blogs.

Previously: How can physicians manage their online persona? KevinMD offers guidance, 33Charts’ Bryan Vartabedian talks about physician blogging, Using social media to fight cholera, A guide to the social web for physicians and Physician 2.0: Do doctors risk becoming irrelevant if they ignore social media?
Via @wingofzock

Congratulations are in order for two Bay Area journalists: Writer Lisa Krieger and photographer Dai Sugano have won a health journalism award for the “Cost of Dying” series that ran in the San Jose Mercury News last year. The project was prompted by something very personal - the illness and death of Krieger’s elderly father - and is summarized nicely by the Association of Health Care Journalists, the organization that gave out the awards:

At the center of Krieger’s unflinching account of her father’s last days is an uncomfortable question: “Just because it’s possible to prolong a life, should we?”

Hundreds of readers wrote in to thank Krieger for sharing her story and going beyond the “death panel” rhetoric that so often stifles honest discussion of end-of-life concerns. Her work demonstrates that reporters can sometimes tell the story from an unusual perspective – their own – and touch readers in a different way than would be possible with more traditional coverage.

Sheri Fink, MD, PhD, a Stanford medical alumna, also won an award from the AHCJ in the beat writing category. Fink is currently penning an article on Hurricane Sandy for the next issue of Stanford Medicine magazine.

Previously: On a mission to transform end-of-life care and Is $618,616 too much to (try to) save a life?
Via Covering Health