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Patient Care, Stanford News, Videos

More on the Navy pilot with mysterious symptoms – and the Stanford doctors who diagnosed him

More on the Navy pilot with mysterious symptoms - and the Stanford doctors who diagnosed him

Last week, we blogged about a Navy pilot whose mysterious symptoms were diagnosed by clinicians here. A just-published Stanford Hospital video shares more of Robert Buchanan’s compelling story.

Previously: Medical mystery solved: Stanford clinicians identify source of Navy pilot’s puzzling symptoms

Health Disparities, Medical Education, Patient Care, SMS Unplugged

In medicine, showing empathy isn’t enough

In medicine, showing empathy isn't enough

SMS (“Stanford Medical School”) Unplugged was recently launched as a forum for students to chronicle their experiences in medical school. The student-penned entries appear on Scope once a week; the entire blog series can be found in the SMS Unplugged category.

SMS_image_072214As a medical student, it’s difficult to face a situation where everything possible is done for a patient, yet due to circumstances (seemingly) beyond our control, the risk of future harm remains uncomfortably certain. The majority of our medical school learning focuses on how to cure illness; unfortunately we’re not always taught how to deal with the real-world issues that face our patients and that threaten the medicine we practice.

This month I’ve been on my neurology rotation at Santa Clara Valley Medical Center, a county hospital with patient demographics quite different from those seen at Stanford Hospital. As I serve a more diverse and disadvantaged socio-economic population, it’s often the case that the information in the patient’s “Social History” section, which I usually quickly pass over, becomes a defining piece in deciding next steps. The 20-something-year-old with daily seizures because he’s so high on methamphetamine that he forgets to take his pills, the 40-year-old with left-sided paralysis who keeps checking in to the emergency department because she feels unsafe living alone in a trailer park, the 60-year-old who didn’t present to the hospital until days after suffering a stroke because he couldn’t physically get to the door to call for help: These patients demonstrate how social situations can make efforts to provide medical care at times seem futile.

In medical school, we’re taught the pathophysiology of disease and systematic approaches to medical management, but not how to deal with social contributors to health. (The latter is a not-so-glamorous aspect of medicine relegated to the hidden curriculum of clerkships.) During pre-clinical years we spend a lot of time discussing how to make empathy a part of our clinical skill-set, but a pitfall to practicing medicine in a way that is sensitive to a patient’s social context is the belief that showing empathy is enough. To express concern for a patient is different from really understanding a patient’s challenges. Things like the fear that drives a patient to repeatedly present to the emergency room for “inappropriate” reasons and the thought process behind not getting an MRI done since it would mean missing work may not fit traditional logic, but they represent an important piece in delivering care.

What can’t be taught in school is an inherent understanding of the difficulties that some patients face, which is why the push for future physicians to be individuals representative of the various backgrounds that patients come from is so important. (It can be surmised that students who have endured these difficulties, themselves or through family, socio-economic or health related, could better relate to patients they come in contact with.) While socio-economic demographics are easily seen on paper, though, what is harder to select for and recruit is the student who has lived the real-world environment characterized by social issues like multiplicity of chronic illness, housing insecurity, and financial hardship. And, of course, many students in this very position never make it to the point of training for a health profession as a result of the very hardships that make them more attune to the social issues that may contribute to poor health.

Medical school recruitment has changed in ways that will hopefully improve diversity of recruited students and contribute to a greater understanding of the background of all sorts of patients among health-care providers. However, more still needs to be done to support students from less-traditional and under-represented backgrounds so they reach the point of applying in the first place. Instead of being discouraged by their less-than-ideal journeys to medical school, students who have endured educational, financial, and social hurdles should be encouraged to use their learned experiences as a frame of reference to positively impact the delivery of health care.

Moises Gallegos is a medical student in between his third and fourth year. He’ll be going into emergency medicine, and he’s interested in public-health topics such as health education, health promotion and global health.

Drawing by Moises Gallegos

In the News, Pain, Patient Care, Research, Stanford News

More attention, funding needed for headache care

More attention, funding needed for headache care

In case you missed it, the San Francisco Chronicle ran a story over the weekend on migraines – and researchers’ ongoing search for a cause and universal treatment. Robert Cowan, MD, director of the Stanford Headache Clinic, was one of the people featured and told writer Stephanie M. Lee:

Headache care is 50 years behind things like diabetes and cancer… It just hasn’t had the attention, hasn’t had the funding, in order to get to the answers we need.

Previously: Director of Stanford Headache Clinic answers your questions on migraines and headache disorders and New Stanford headache clinic taking an interdisciplinary approach to brain pain

Health Disparities, LGBT, Mental Health, Patient Care, Stanford News

Stanford med student discusses his documentary on LGBT vets’ health

Stanford med student discusses his documentary on LGBT vets' health

doublelifeWhen Stanford anesthesiologist Audrey Shafer, MD, welcomed attendees to a screening of “The Camouflage Closet“ on campus recently, she noted the artistic accomplishments and service work of the film’s director, Michael Nedelman. (And also mentioned he was “a Stanford medical student in his spare time.”) Nedelman, who will be entering his third year here, conducted a project with nine LGBT veterans, all patients at the Veterans Affairs Palo Alto Health Care System, exploring their experiences of trauma and recovery.

Nedelman and his collaborators engaged in a community-based participatory method of film-making, allowing participants to tell their stories through art as a path toward empowerment. The participants were provided with cameras to document their stories; they also had a say in the editing process. And while the project was neither officially sanctioned research nor therapy, many of the participants found the process therapeutic. Christine Stout-Holmes said this in the film about sharing her story:

It’s healing. It makes me feel like, “Hey, I don’t have to be agoraphobic.” “Hey, I don’t have to isolate.”

Of course, I feel fists beating me on my back, but I know that that’s not now. And I know that what I’m doing now is going to benefit clinicians, and vets, and hopefully artists, and young girls to know that every story is important.

Since the film’s premiere last June, it has screened at the National Queer Arts Festival, the 31st annual Gay and Lesbian Medical Association conference, and at universities, film festivals and VA hospitals across the U.S. and in Mexico.

Below, Nedelman answers questions about his work.

You have a BA in film studies from Yale. How did you decide to attend med school, and have your interests in art and medicine always intersected?

It took me a while to understand exactly how my interests in art and medicine intersected, but it turned out they had a common ancestor in my love of story.

A few years out of college, I was working at Mount Sinai in New York City on both clinical research and documentary film studies. Whether or not there was a camera in the room, I loved hearing people’s stories, and turning those stories into something meaningful. But in a medical context, I also saw the opportunity to get involved in these stories – to reach past the lens and make a tangible difference.

Combining the two wasn’t really a new concept, though. My first major work in college was a photography project addressing preventable blindness in South India. As with “The Camouflage Closet,” I loaned out cameras to rural vision clinic patients who were able to document their restored sight through images that were important to them. But I had no idea that hyphenating doctor-filmmaker was even an option until I discovered, and later met with, filmmakers like Maren Grainger-Monsen, MD, and Gretchen Berland, MD. Something clicked when I figured out that patient care and digital media could go hand-in-hand.

What are some of the issues faced by this population that you’re most interested in exploring through storytelling?

Some of the issues I found most compelling are not just the unique challenges faced by some individuals (e.g. witch hunts of the pre-DADT – “Don’t Ask, Don’t Tell” – era, increased rates of military sexual trauma, barriers to accessing care), but also the creativity and strength that come from their recovery narratives. Alongside some of the heavier moments in the film, there’s some humor, too. I think I personally learned a lot from the veterans’ resilience, and how their pride – for being LGBT, and for being veterans – factors into their personal growth.

What do you hope viewers will take away from your film?

I hope viewers will come out of the film with a desire to learn more about the unique challenges, types of trauma, and sources of resilience among a previously silenced community. I think there’s a lot to identify with in the film, whether or not you identify as LGBT or a veteran, and there’s a lot to be said for turning empathy into action. This is partly why we also created an accompanying educational resource that summarizes previous research, evidence-based suggestions for culturally relevant care, and resources for clinicians and veterans.

The veterans were excited that clinicians and providers would see and learn from their work. But at the end of the day, I wonder if some of them might have answered this question a little differently. Something we often heard among the vets was, “Even if just one other veteran out there sees this and knows they aren’t alone, we’ve accomplished what we came here to do.”

Previously: Documentary on LGBT veterans’ PTSD, trauma and recovery premieres tomorrow and Photography and storytelling may help poor women with HIV cope with their illness
Film still from “The Camoflauge Closet” courtesy of Michael Nedelman

Patient Care, Pediatrics, Research, Technology

How virtual visits can help children in the hospital reduce stress, speed up recovery

How virtual visits can help children in the hospital reduce stress, speed up recovery

Past research has shown that patients in the hospital experience less nerve-related pain and recover more quickly when they have visitors. Now findings recently published in Pediatrics show that virtual visits are equally beneficial.

In the study, researchers at the University of California, Davis Children’s Hospital analyzed the effectiveness of Family-Link, a program that provides webcams, laptops and Internet access to pediatric patients. Researchers assessed the anxiety levels of roughly 230 children who used the teleconferencing service and 135 who did not when they were admitted to the hospital and discharged using the Parent-Guardian Stress Survey. According to a Futurity post:

Overall, children who used Family-Link felt less stressed compared to those who did not use the program. The effect was even more pronounced for children who lived closer to the hospital and had shorter hospitalizations. This group experienced a 37 percent stress reduction when using Family-Link.

“This study shows that we have another tool to help children during their hospital stays,” says Yang. “The improvement in stress scores shows that Family-Link is really helping many children and might possibly be improving outcomes.”

Previously: Using the iPad to connect ill newborns, parents

Patient Care, Stanford News

Medical mystery solved: Stanford clinicians identify source of Navy pilot’s puzzling symptoms

Medical mystery solved: Stanford clinicians identify source of Navy pilot's puzzling symptoms

Navy pilotTalk about medical mysteries: For two years, Navy pilot Robert Buchanan was plagued with symptoms like an irregular heartbeat, a drooping eyelid, hypersensitive sinuses, jaw pain and neck swelling – and no one could figure out exactly what was wrong.

“I had never encountered anything quite like it before,” said Edward Damrose, MD, chief of the Division of Laryngology at Stanford, who has been seeing patients for nearly 20 years.

Damrose worked with a team of doctors from a variety of specialties to determine the source of the problems – ultimately identified as a kind of decompression injury following a 2006 flight accident – and treat Buchanan. An article in the current issue of Inside Stanford Medicine chronicles the long road to treatment and ends on a happy note:

This winter, eight years after his near-fatal flight and two years after he came to Stanford for help, after a slew of diagnostic tests and more than a dozen incremental surgeries to fix his injuries, Buchanan passed [the Navy's] tests and qualified to fly again. With that step, he can move toward commanding a squadron of fighter pilots. “That’s the pinnacle of an aviator’s career,” he said.

“This case taught me to never, never take it for granted that you know it all,” Damrose said. “The answers aren’t always in textbooks.” The literature search also revealed other patients suffering from similar symptoms, almost all related to decompression injury, he said. “And Cmdr. Buchanan spurred us to keep going.”

Previously: NIH network designed to diagnose, develop possible treatments for rare, unidentified diseases
Photo by Todd Holland

Cancer, Imaging, In the News, Patient Care, Stanford News, Technology

New technology enabling men to make more confident decisions about prostate cancer treatment

New technology enabling men to make more confident decisions about prostate cancer treatment

To watch and wait, or operate? There’s quite a bit of confusion, and a variety of differing opinions from the medical community, regarding prostate cancer treatment – so it’s no wonder that some men question whether the treatment path they’ve chosen is the right one. A new technology at Stanford, though, is hoping to alleviate some of the confusion and help with the decision-making process.

By using a combination of ultrasound and MRI imaging, Stanford physicians can use the resulting 3D images to get a far more detailed look at the level of cancer and its aggressiveness than they were able to in the past. Patients, in turn, will be empowered with the knowledge to make more confident decisions about how, and whether, to proceed with treatment. ABC7 News recently aired a story on the new technology.

Previously: Six questions about prostate cancer screening, Ask Stanford Med: Answers to your questions on prostate cancer and the latest research and Making difficult choices about prostate cancer

Cancer, Patient Care

“As a young lung cancer patient, I had to find my own path”: Fighting stage IV with full force

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s bonus column comes from patient advocate Emily Bennett Taylor.

When I was diagnosed at age 28 with stage IV lung cancer (yes, you read that right: 28. Non-smoker, college athlete, lung cancer), I wanted to shout it from the rooftops. No, not in the joyous, “share-my-news” type of way. The concept was so unfathomable that I sometimes felt the only way it would really sink in is if I screamed it out loud in public. I didn’t, of course. While many social norms, like dressing to leave the house or even showering, went completely out the window as I underwent treatment, I’m happy to report that I managed to maintain at least a semblance of sanity in public. And I’ve thankfully found better venues – such as this article – to share my story.

I learned very quickly that as a young lung cancer patient, I had to find my own path. In a cancer normally associated with older smokers, I was constantly telling my doctors: “I’m different. I’m strong. I want to be as aggressive as possible.” Standard of care is to treat stage IV patients palliatively, but that didn’t sit well with me – I wanted a cure. I was told “no” to surgery countless times. I kept seeking second, third, multitudes of opinions in order to find a doctor who would see me as the young, strong person I was with my whole life ahead of me.

While I tested negative for all known genetic mutations (I know one is out there – please find it for me!), I was fortunate to be part of a small percentage of patients who respond to traditional chemotherapy. After six rounds of carboplatin, Alimta and Avastin, and two additional infusions of Avastin, I found my white knight in Raja Flores, MD, of Mount Sinai Hospital. My husband and I relocated from our home in California to New York City for three months, and on February 8, 2013, Dr. Flores removed my entire right lung, pleura, half my diaphragm, all mediastinal lymph nodes, and the pericardial sac (around my heart), which he rebuilt with Gore-Tex.

Three weeks into my recovery, I began a follow-up course of 28 rounds of high-dose radiation to my right lung cavity. If there were any cancer cells left, Dr. Flores and I intended to fry them into oblivion – even if side effects had me vomiting and nauseated for the better part of six weeks, and exhausted for another six months.

My reward? Dr. Flores declared me N.E.D. – No Evidence of Disease. I’ve lived with that diagnosis for almost a year and a half now, and it feels fantastic.

Is life with one lung difficult? Sometimes. But the most important thing to me is that it’s still life. Lots of surgeons told me “no” because they believed removing a lung would diminish my “quality of life.” For me, losing a lung meant gaining my life, and that’s a trade-off I think any patient would make if given the choice.

If you’re a medical student looking for an area where you can make a serious impact, consider lung cancer. In the past few decades, survival rates for other major cancers (breast, prostate, colon) have increased to well above 50 percent, some reaching the upper 90s. Lung cancer, the nation’s No. 1 cancer killer? A dismal 16.8 percent.

This is a field ripe for advancement. We need researchers developing better treatments and methods of early detection. We need doctors who both understand that the face of lung cancer is changing and are also willing to push the envelope with their patients to find an individualized, aggressive cure.

Every lung cancer is different, and every patient deserves a treatment plan with the goal of preserving life. You can be the difference. You can make an impact. And you can change the course of someone’s life, just like Dr. Flores did for me.

Emily Bennett Taylor, a former state track champion, college volleyball player, and finance manager, is now a Stage IV lung cancer survivor and spokesperson/patient advocate for the Bonnie J. Addario Lung Cancer Foundation. Her story has been highlighted on the Steve Harvey Show, the Atlantic Monthly, and on her blog - embenkickscancer.wordpress.com - named to Healthline’s Top Lung Cancer Blogs in 2013 and 2014.  She writes candidly about her treatment and life with one lung, as she works to raise awareness about the leading cancer killer.  Emily lives in Southern California with her husband Miles and their two lovable mutts, Ginny & Tonic.

Patient Care, Research, Stanford News

New study shows standardization makes hospital hand-offs safer

New study shows standardization makes hospital hand-offs safer

A study published online this week in Pediatrics offers encouraging results from a large-scale effort to tackle a persistent safety problem in hospitals. The study is the first scientific investigation of a multi-hospital project to improve patient hand-offs, the times when a patient’s care is being transferred from one person to another.

When hand-offs go wrong, the doctors and nurses taking over a patient’s care may not understand the individual’s diagnosis or current problems. They might not know which tests have been completed or which medication doses have already been given. These types of errors can, at best, waste everyone’s time, and, at worst, harm patients.

Fortunately, these latest findings demonstrate how hospitals can cut back dramatically on such problems. The one-year study of 23 pediatric hospitals across the country found a significant drop in hand-off related care failures when the process was standardized. Researchers examined both shift changes and patient transfers from one hospital department to another. The rate of hand-off related care failures went from slightly over 25 percent at baseline to about 8 percent by the end of the study. (Researchers didn’t measure actual harm to patients, but rather communication failures that could have resulted in harm had they gone unnoticed.)

“Surprisingly, this manuscript was amongst the first of its kind to actually show a decrease hand-off-related care failures,” senior author Paul Sharek, MD, medical director of quality management and chief clinical patient safety officer at Lucile Packard Children’s Hospital Stanford, said in an e-mail.

How did they improve so dramatically? By defining every element of the hand-off, including the interactions’ intent, content, process and team leadership. At the end of the study, the researchers identified several elements of good hand-offs, including the need for active participation by both sending and receiving teams; a defined opportunity for the receiving team to ask questions; a script of all the important hand-off elements; and a summary of basic issues and next steps for each patient. Overall, caregivers were satisfied with the new process, suggesting they’d buy into it for the long run.

“Given the increasing recognition of the risk of hand-offs in health care, these findings reassure us that large-scale improvements in hand-0ff safety can be achieved rapidly,” the researchers write.

Previously: Less burnout, better safety culture in hospitals with hands-on executives, new study shows, How efforts to mine electronic health records influence clinical care and Automated safety checklists prevent hospital-acquired infections, Stanford team finds

Chronic Disease, NIH, Patient Care, Research

NIH network designed to diagnose, develop possible treatments for rare, unidentified diseases

doctors' tools - smallVertigo, nausea, headache, fatigue, confusion. For years someone close to me has experienced severe and periodic bouts of these symptoms. It’s clear something is wrong and yet, despite countless tests and visits with specialists in cardiology, neurology, ophthalmology, pulmonology, otolaryngology, and immunology, no one has been able to figure out what that something is. At one of his last appointments – to the great disappointment of this patient and (perhaps even more so) his worried and frustrated wife – my loved one was gently told that he may have to face the very real possibility that he’ll never get a definitive diagnosis.

Unfortunately, this patient is far from alone: Plenty of people are living with mysterious symptoms that affect their quality of life (or worse), and it’s not uncommon for patients with rare diseases to have waited years for their diagnosis. With this in mind, the National Institutes of Health launched in 2008 its Undiagnosed Diseases Program, a pilot program designed to “provide answers to patients with mysterious conditions that have long eluded diagnosis” and “advance medical knowledge about rare and common diseases.” (Since that time, 600 children and adults have been evaluated, and approximately 100 patients were given a diagnosis.)

Now, the program is being expanded into the Undiagnosed Diseases Network, with the NIH announcing last week that six medical centers – including Stanford – will be joining and contributing local medical expertise. The NIH will work with experts from these centers (including Euan Ashley, MD, PhD, Stanford’s principal investigator) to, as described in a release, “select from the most difficult-to-solve medical cases and together develop effective approaches to diagnose them.” The physicians will “collect and share high-quality clinical and laboratory data, including genomic information, clinical observations and documentation of environmental exposures,” and they’ll “benefit from common protocols designed to improve the level of diagnosis and care for patients with undiagnosed diseases.”

In our online story on the network and the $7.2 million grant that Stanford received, Matthew Wheeler, MD, medical director for the grant, notes that “Stanford was chosen for our informatics expertise, our experience with clinical interpretation of whole-exome and whole-genome data, and our scientific potential to follow up any lead.” As my colleague Erin Digitale further explained:

The team will use cutting-edge genomics and medical phenotyping techniques to diagnose patients, and will also aim to understand the underlying biology of patients’ conditions so they can generate targets for new therapies, Wheeler said. “We aim to make a deep dive into each patient’s biology,” he added.

By the summer of 2017, each new clinical site is expected to see 50 or more patients per year. Referring clinicians can submit applications on behalf of undiagnosed patients on the program website.

Previously: Using crowdsourcing to diagnose medical mysteries, New search engine designed to help physicians and the public in diagnosing rare diseases and The road to diagnosis: How to be insistent, persistent and consistent
Photo by Adrian Clark

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