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Cardiovascular Medicine, Patient Care, Pediatrics, Stanford News, Surgery

Complex procedure helps teen with rare congenital heart defect

Complex procedure helps teen with rare congenital heart defect

broken heartPeople don’t usually associate teenagers with heart problems, but congenital heart defects are more common than you might think.

A recent Healthier, Happy Lives Blog post tells the story of Ray Santa Cruz, a high-school senior from Salinas, Calif. who began to suffer from a mysterious and severe chest pain when he exerted himself. It had gotten so bad he had trouble breathing and sleeping.

It turns out that Cruz had an anomalous aortic origin of a coronary artery, meaning that his arteries didn’t attach in the right places. Until very recently, most people with this condition went undiagnosed until a post-heart-attack autopsy. Even with a more timely diagnosis, many surgeons would try to operate in the same way they would on a 70-year old, which is “absolutely the wrong thing to do,” according to Frank Hanley, MD, the surgeon who ultimately fixed Cruz’s heart. A standard bypass operation is “what you do for Grandpa” but not young patients like Cruz.

Stanford physicians developed surgical techniques to fix the defect fifteen years ago, and since then, Lucile Packard Children’s Hospital has treated about 90 young patients, more than any other institution. Cruz had a very specific variation of the condition, for which neither of the standard procedures would have worked; Hanley tried something entirely new, and so far the complex procedure has been a success.

Check out the story to read more.

Previously: Baby with rare heart defect saved by innovative surgery, A nurse puts heart into her work at Adult Congenital Heart Program, Patient is “living to live instead of living to survive,” thanks to heart repair surgery and Should high school and college athletes be routinely screened for heart conditions?
Photo by Nicolas Raymond

Chronic Disease, In the News, Patient Care, Public Health

Physicians advocate for “more educated and deliberative decision making” about dialysis

Physicians advocate for "more educated and deliberative decision making" about dialysis

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More than 20 million Americans, one in 10 adults, have some form of chronic kidney disease. For those suffering from chronic kidney disease or end-stage renal disease, dialysis is a commonly recommended treatment. But a story published today in the New York Times reports that for older patients the treatment is increasingly being seen as an choice, not an imperative, and “a growing number of nephrologists and researchers are pushing for more educated and deliberative decision making when seniors contemplate dialysis.”

Paula Span writes:

Unquestionably, dialysis has helped save lives. The mortality rate for patients with chronic kidney disease decreased 42 percent from 1995 to 2012, according to the most recent report from the United States Renal Data System.

The picture for older patients, in particular, is less rosy. About 40 percent of patients over age 75 with end-stage renal disease, or advanced kidney failure, die within a year, and only 19 percent survive beyond four years, the renal data system has reported.

In a Canadian survey, 61 percent of patients said they regretted starting dialysis, a decision they attributed to physicians’ and families’ wishes more than their own. In an Australian study, 105 patients approaching end-stage kidney disease said they would willingly forgo seven months of life expectancy to reduce their number of dialysis visits. They would swap 15 months for greater freedom to travel.

In real-world hospitals and nephrologists’ offices, of course, patients aren’t offered such trade-offs. “People drift into these decisions because they’re presented as the only recourse,” said Dr. V. J. Periyakoil, a geriatrician and palliative care physician at Stanford University School of Medicine.

The moving video above, which was produced by Periyakoil, tells the story of one older man’s decision to stop dialysis after 12 years. (“It takes a lot out of you – it’s a long drawn-process,” Christopher Whitney explained in the piece. “If I would get a kidney now, it would be a waste… I’m not the person I used to be.”) About the difficult decision-making process that faces patients like Whitney, Periyakoil said in an email this morning:

Persons with kidney failure often struggle with making decisions related to dialysis. These decisions impact not only the patient but also their family members. For some, these decisions have ethical and moral implications as well. You may have questions like “Should I start dialysis right away or can I wait? Is it okay to refuse dialysis? I have been on dialysis and feel tired all the time and have poor quality of life – is it okay to stop dialysis? If I stop dialysis how long will live?”

Periyakoil urges patients to “think about what your life goals are as well as what matters most to you at life’s end. Be sure to discuss these important issues with your doctor so you can make your wishes known and make decisions that are right for you and your family.”

Previously: How best to treat dialysis patients with heart disease, Keeping kidney failure patients out of the hospital, Study shows higher Medicaid coverage leads to lower kidney failure rates and Benefits of dialysis for frail elderly debated

Cancer, Global Health, Patient Care, Stanford News

New global cancer map aims to improve care in developing countries

New global cancer map aims to improve care in developing countries

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Most people don’t associate cancer with the developing world, yet 60 percent of new cancer cases and 70 percent of cancer deaths occur in less developed parts of the world, according to the World Health Organization. Now, the nonprofit Global Oncology, Inc. has launched a Global Cancer Project Map, a first-of-its-kind resource that will connect cancer experts around the world in an effort to advance cancer research and care in low-resource areas.

The interactive map includes more than 800 projects on six continents. With a few simple clicks, users can search for cancer experts and research projects and then contact the investigators and program managers. The goal is to spur collaboration among people in the field and enable experts to share their collective knowledge.

“Before it was difficult or often impossible to find information about cancer projects or experts, especially in limited-resource settings,” said Ami S. Bhatt, MD, PhD, an assistant professor of medicine and genetics at Stanford and co-founder of Global Oncology, Inc. “The map now makes it possible to connect colleagues in the global cancer community with a maximum of six clicks of a computer mouse.”

Bhatt, who directs global oncology for Stanford’s Center for Innovation in Global Health, and GO co-founder Franklin Huang, MD, PhD, have been working with the National Cancer Institute on ways to bring multidisciplinary teams together to solve complex problems in cancer. While there are many dedicated scientists and caregivers doing innovative work in cancer in the developing world, there’s been no single place where they could share knowledge or reference the work of their colleagues, she said. The cancer map is a first step in this process.

“We have the ambitious goal of providing access to every cancer research, care and outreach program in the world through the map,” said Huang, who is an instructor at the Dana-Farber Cancer Institute.

A collaboration with the NCI, the map was developed by GO volunteers, who are scientists, policymakers, public health experts, lawyers and other highly skilled individuals. It covers a wide range of projects, from prevention and screening to clinical programs and palliative care. For instance, it includes a project in Turkey to improve diagnostic accuracy of mammograms to detect breast cancer; development of an early screening test for gastric cancer in Mexico; and use of supplements to prevent arsenic-induced skin cancer in Bangladesh.

“The map is an important and innovative step forward in our effort to reduce health disparities and strengthen human capital in underserved areas of the world,” said Michele Barry, MD, director of Stanford’s Center for Innovation in Global Health. “With cancer rates rapidly increasing in low-resource settings, the map creates a place where the global cancer community can share and access information that is critical to providing better treatment and care.”

Bhatt and Huang unveiled the new map today at the Symposium on Global Cancer Research, being held in Boston. The symposium is co-sponsored by the NCI, the Consortium of Universities for Global Health and the Dana-Farber Cancer Institute.

Image from Global Oncology, Inc.

Medical Education, Medicine and Literature, Medicine and Society, Mental Health, Patient Care

Using graphic art to understand the emotional aspects of disease

Using graphic art to understand the emotional aspects of disease

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When it comes to describing the feelings of hopelessness of depression, the fear and anxiety of having an operation or the unrelenting pain of a chronic condition, sometimes words are not enough. But, as some patients have discovered, art can be a powerful medium for portraying and translating these complex emotional experiences. Cartoons can also help future medical professionals empathize with patients and consider their experience from more than a clinical perspective.

An article published last week on the anthropology blog Teaching Culture explores the use of graphic art in medical anthropology courses. It takes its inspiration from Allie Brosh’s comic Hyperbole and a Half, in which she uses a crudely drawn figure to transport readers through the painful inertia and numbness of her depression. I stumbled upon this comic a few years ago when a dear friend was depressed. At the time, I didn’t understand how that could be or what that meant. Brosh’s bizarre, raw, and yes funny, comic resonated not only with what I saw my friend going through, but with my own experience, even though I was not depressed. It enabled me to empathize and to offer her support that was more relevant.

The article also describes a curriculum that incorporates “graphic pathographies” – graphic novels and comics about experiencing illness – into a course for pre-med students. The coursework “examines the multifaceted relations between biomedicine, culture, and the art of care, and places a special emphasis on how creative and humanistic approaches to illness and healing might enrich clinical practice.”

When I asked for his thoughts, Errol Ozdalga, MD, a professor of general medicine involved with the bedside medicine Stanford 25 initiative, commented:

Graphic art is an expression that is probably under-utilized. At Stanford, our guest services offers patients the chance to do guided imagery by expressing their feelings via drawing. Many physicians are unaware this service exists. It’s an opportunity to better understand our patients’ perspectives and promote the importance of connecting to patients among our students.

Previously: Engaging with art to improve clinical skills, Image of the week: a medical-focused manga comic and Stanford nurse’s whiteboard artistry brings cheer to patients, co-workers
Photo by Krystal T

Patient Care, Pregnancy, Stanford News, Women's Health

New obstetric hemorrhage tool kit released today

New obstetric hemorrhage tool kit released today

pregnantbelly-3A few years ago, when my niece was born, my sister had a severe postpartum hemorrhage. I remember getting off the phone with my mom, who had just delivered the simultaneous news of the baby’s birth and my sister’s serious condition, and feeling terrified. My sister was being taken into surgery to try to stop the bleeding. What if she died? In the U.S., deaths from postpartum hemorrhage are rare, but they do happen.

The first thing that gave me a sense of reassurance, strangely, was a search of the medical database PubMed. After I got off the phone, I sat at my laptop looking at a multicolored flow chart that summarized how to stop an obstetric hemorrhage. All of the steps taken by my sister’s medical team were listed. Although she was hundreds of miles away, I felt comforted by the knowledge that her doctors were following well-established, evidence-based guidelines for what to do.

It wasn’t until a few minutes later that I realized the flow chart was developed by doctors I know. It was part of the Obstetric Hemorrhage Toolkit, a set of guidelines published by the California Maternal Quality Care Collaborative (CMQCC). I had first heard of the toolkit from a Stanford obstetric anesthesiologist who helped put it together, but had never imagined it might save someone in my family.

The toolkit was developed because maternal hemorrhages are rare, risky, and extremely time-sensitive. The kit gives medical teams the information they need to rehearse for, recognize and treat these hemorrhages immediately, without wasting minutes that could save the patient’s life.

Today, the CMQCC is releasing a new version of the toolkit. The update strengthens several areas of the kit, providing clearer parameters for use of certain medications and blood products and more information about how to support patients and families after a maternal hemorrhage, for instance.

And the flow chart I found calming is still there, on page 21 of this .pdf file. I’m so happy to see it again because, for me, it symbolizes the doctors, patients and families who will benefit from the kit in the future.

As for my family’s story, my mom called back later on the evening of my niece’s birth to tell me that the bleeding had stopped and my sister was recovering. Her introduction to motherhood was rougher than most, but today my sister and her daughter are fine: My favorite moment of a recent family gathering was seeing my chubby-cheeked niece racing toward me yelling “Aunnnnntie Errrrin!” with my beloved sister in hot pursuit behind her.

Previously: In poorest countries, increase in midwives could save mothers and their babies, Cardiac arrest in pregnancy: New consensus statement addresses CPR for expectant moms and Program focuses on treatment of placental disorders
Photo by bies

Health Costs, Health Policy, In the News, Patient Care, Public Health

Health-care policy expert Arnold Milstein weighs in on Medicare’s plan to prioritize “value over volume”

Health-care policy expert Arnold Milstein weighs in on Medicare's plan to prioritize "value over volume"

8266476742_4967a82707_zAmerican health-care spending is the highest in the world, yet some question whether that money really leads to improved patient outcomes. But significant reforms taking place within Medicare, the US’s biggest healthcare payer, over the next few years aim to quell these concerns and reduce costs while improving quality of care.

Health policy experts explained the context of these changes last week in a webinar hosted by Reporting on Health and supported by the NIH’s Health Care Management Foundation. The panel featured Stanford’s Arnold Milstein, MD, MPH, director of the Clinical Excellence Research Center, as well as health economist Austin Frakt, PhD, professor at Boston University School of Medicine, and Jordan Rau, a correspondent for Kaiser Health News.

Health-care’s dominant “fee for service” (FFS) model has been around “since doctors were getting paid in chickens,” said Rau in the webinar, but it has no link whatsoever to quality. Many think this model needs to be changed because it incentivizes physicians to do more (and more expensive) procedures, regardless of the effect they have on patient outcomes. “Better, less expensive care is a national imperative,” said Milstein. “The cost to society of inefficiently delivered care is creating enormous opportunity cost.”

Starting in 2011, Medicare began to tie payments to quality: Doctors get paid 2 percent more if quality goes up, and 6 percent less when it goes down, based on patient ratings and rates of readmission and infection. In 2014, quality-linked FFS accounted for around 80 percent of care, of which around 20 percent featured some more radical change. The new plan is that 50 percent of payments will be non-FFS by 2018.

Options to reform this model could include bundled fees (a flat rate per “episode” that includes all complications and follow-up care), accountable care organizations (ACOs) that take responsibility for all patient needs and costs, incentives for cross-provider cooperation, and population-based payment in which doctors receive a set fee for any patient (currently being pioneered in Maryland).

How will we know which changes to push? Milstein used a graph to indicate “positive value outliers,” institutions with high quality and low cost, whose strategies and techniques will be emulated to see if they can be effective elsewhere. He explained what researchers found makes them different:

[Positive value outliers] tended to have deeper, more personal relationship with their patients; their patients trusted that if they called these doctors on nights and weekends, someone who knew something about them would be rapidly responsive. Doctors’ vision of their responsibility to their patients extended far beyond producing a perfect office visit; it really meant being a steward for their patients’ best interests as their patients traversed emergency room doctors, hospitalists and medical specialists. And lastly, these doctors were not trying to be solo heroes – they did a wonderful job hiring and training medical assistants and taking advantage of a team… and it was associated with a substantial improvement in value. Our next step is to splice this DNA into average performing primary care practices and verify that this is indeed the right stuff.

Some other ideas for achieving the targets were mentioned, such as sending physicians to homes so patients don’t get admitted, or in the longer term, having an intensive-care unit (ICU) “airline control tower” with more perspective than those on the “frontline” of critical care, an idea Milstein said was studied across 56 American ICUs and resulted in a 25 percent mortality reduction.

Milstein said such approaches could lower baseline health-care costs by 30 percent, but moreover could slow the rate at which health-care spending outgrows the economy, which is the real measure of success. Innovators in this area, he said, will need to draw from behavioral and computer science to think about problems differently.

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In the News, Pain, Patient Care, Research

More benefit than bite: Potential therapies from “pest” animals

More benefit than bite: Potential therapies from "pest" animals

512px-Scary_scorpionA painful spider bite can make you question why such creatures exist. Yet just because “pests” like spiders, scorpions, and snakes lack the appeal that kittens and puppies possess, it doesn’t mean they aren’t important or useful.

Yesterday, an article from Medical News Today drove this message home by highlighting some of the medical benefits we derive from six of the creatures we tend to complain the most about. As writer Honor Whiteman explains in the story, scientists are exploring ways to use toxins and substances produced by so-called pest animals, such as spiders scorpions, and reptiles, to treat chronic pain, repair nerves, and develop new ways to kill the human immunodeficiency virus.

From the piece:

In 2013, MNT [Medical News Today] reported on a study published in Antiviral Therapy, in which researchers revealed how a toxin found in bee venom – melittin – has the potential to destroy human immunodeficiency virus (HIV).

The investigators, from the Washington University School of Medicine, explained that melittin is able to make holes in the protective, double-layered membrane that surrounds the HIV virus. Delivering high levels of the toxin to the virus via nanoparticles could be an effective way to kill it.

A more recent study published in September 2014 claims bees may also be useful for creating a new class of antibiotics. Researchers from the Lund University in Sweden discovered lactic acid bacteria in fresh honey found in the stomachs of bees that has antimicrobial properties.

The story cites several other potential uses for venoms and animal-derived substances, such as my favorite example, Gila monster spit:

In 2007, a study by researchers from the University of North Carolina at Chapel Hill School of Medicine revealed how exenatide – a synthetic form of a compound found in the saliva of the Gila monster, called exendin-4 – may help people with diabetes control their condition and lose weight.

The compound works by causing the pancreas to produce more insulin when blood sugar is too high. In the study, 46% of patients who were given exenatide in combination with diabetes drug metformin had good control of their blood sugar, compared with only 13% of control participants.

As Whiteman explains in the article, many of these potential medical treatments are still in the early stages of development. Yet some therapies, such as the synthetic version of the compound found in Gila monster saliva, exenatide, are already in use, offering hope that other animal-derived medical treatments may be available in the future.

Previously: Tiny fruit flies as powerful diabetes modelFruit flies headed to the International Space Station to study the effects of weightlessness on the heartBiomedical Indiana Jones travels the world collecting venom for medical research and Tarantula venom peptide shows promise as a drug
Photo by H Dragon

In the News, Patient Care, Research, Videos

Researchers develop bandage that senses bedsores before they appear

Researchers develop bandage that senses bedsores before they appear

Bedsores have been the bane of immobile patients, and their doctors, for decades. In the 19th century, the consequences of these skin lesions were so severe they were said to herald death. Today, doctors and medical processionals are trained to prevent these dying patches of skin, and the serious septic infections associated with them, by ensuring that patients do not sit or lie in the same position for too long, but this method is imperfect.

Now, researchers from the University of California, Berkeley and the University of California, San Francisco have developed a new bandage that senses dying skin cells before they’re visible to the human eye. This bandage could help doctors and medial professionals detect bed sores in their earliest stages when they can easily be healed, according to a press release:

“By the time you see signs of a bedsore on the surface of the skin, it’s usually too late,” said Dr. Michael Harrison, a professor of surgery at UCSF and a co-investigator  of the study. “This bandage could provide an easy early-warning system that would allow intervention before the injury is permanent. If you can detect bedsores early on, the solution is easy. Just take the pressure off.”

As associate professor Michel Maharbiz, PhD, explains in the video above, the cellophane-like bandage works by using a network of electrodes to detect the changes in electrical signals associated with dying cells. “The genius of this device is that it’s looking at the electrical properties of the tissue to assess damage. We currently have no other way to do that in clinical practice,” said Harrison.

Previously: New medicine? A look at advances in wound healingResearchers turn to spider webs to design improved medical tape and The human condition

otolaryngology, Patient Care, Pediatrics, Research

A serendipitous save that changed treatment of the most common tumor of infancy

A serendipitous save that changed treatment of the most common tumor of infancy

IsabellaManley1stgrade-cropAt research institutions like Stanford, we often talk about the value of evidence-based medical care, the kind based on careful scientific comparisons of which treatments work best.

But sometimes, even the best-studied treatments fail. That’s what happened in 2008, when a baby named Isabella Manley was brought by her parents from their Sacramento, Calif., home to Lucile Packard Children’s Hospital Stanford because of a tumor in her trachea that threatened to block her breathing. Her case illustrates that serendipity sometimes plays a key role in medical success.

Isabella had a hemangioma, the most common tumor of infancy. Most hemangiomas, which consist of extra blood vessels, create harmless red marks on a baby’s skin that fade with time. Isabella’s was much more serious. Although her doctors tried all the hemangioma treatments then reported in the medical literature, including high-powered steroid drugs and two types of surgery, her breathing problems persisted. Pediatric otolaryngologist Kay Chang, MD, who oversaw her care at Stanford, ordered an MRI to find out why. A story I wrote about her case explains what happened next:

“We found, to our horror, that this hemangioma was massive, surrounding her entire windpipe and also her heart,” Chang said.

“It was becoming tangled into every structure in her neck and crawling down into her chest,” said Mai Thy Truong, MD, a pediatric otolaryngologist now with the hospital’s vascular malformations clinic.

… The tumor was too extensive for surgery and was still growing. Truong and Chang feared that it would soon block Isabella’s airway. They were not sure they could save her.

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Medical Education, Patient Care, SMS Unplugged

An introvert in medicine: Taking the plunge

An introvert in medicine: Taking the plunge

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SMS (“Stanford Medical School”) Unplugged is 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

Does the profession of medicine favor certain personality types over others?

When I was younger, it seemed like all of my doctors were gregarious, self-confident, and humorous, leaving me to wonder if one can “make it” in medicine without being outgoing. This seemed a natural consequence of the fact that so much of medicine is team-based and demands constant interpersonal interaction with colleagues and patients. For many introverts, a career in which a substantial amount of time is spent interacting with complete strangers — often in a deeply personal context — might seem like an odd choice.

Indeed, my experience in medical school so far has lived up to this idea in many ways. Group learning has been a fixture of our curriculum since day one, as has the fabled tradition of being put on the spot and quizzed by teachers in front of peers. Networking is still the preferred method for finding research opportunities. And the famous learning philosophy of “see one, do one, teach one” has been jarring for me as somebody who likes to take time for deliberation and reflection — a bit like being pushed out of an airplane at 10,000 feet.

All of this would suggest that extroverts might be at an advantage during medical school. And yet, it’s undeniable that a great many people who do not identify this way survive, and even thrive, in medicine, suggesting that there is hope for the rest of us.

For me, one of the most helpful aspects has been the formation of strong relationships during school. Having slowly built my own “team” of classmates, faculty, and mentors over the last several months, the pressure of the more challenging moments of medical school has been eased by our mutual respect and understanding. Being pushed out of the airplane isn’t so bad when you’re strapped to an expert skydiver who is looking out for you.

Sometimes, though, it’s not possible to rely on those relationships. When I have only a few minutes to perform a full exam on a new patient, I’ve had to learn to trust my own strengths. I might not win over patients with personable charm and witty humor, but I’ve found that a warm, but quiet, steadiness can achieve a similar level of connection. I’ve been encouraged to find that there are many different ways to make the personal connection that allows us as doctors to improve the health of our patients.

In fact, this has been one of the most important lessons that I’ve learned so far: learn from others, but don’t feel like you need to be just like them. Instead of worrying about whether I have what it takes to become that funny, charming doctor I had when I was growing up, I’ve begun to chart my own path. This takes time, support, and even some discomfort – but then, like jumping out of an airplane, who ever said that learning to be a doctor was easy?

Nathaniel Fleming is a first-year medical student and a native Oregonian. His interests include health policy and clinical research.

Photo by Lachlan Rogers

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