Published by
Stanford Medicine

Category

Patient Care

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

World-first treatment for rare heart defect saves baby born at Packard Children’s

World-first treatment for rare heart defect saves baby born at Packard Children's

Group shot Liam and doctorsLinda Luna was five months pregnant with her first child when she got the bad news: Ultrasound scans showed a deadly defect in her baby boy’s heart. He had a 90 percent chance of dying before or just after birth. But thanks to a groundbreaking treatment at Lucile Packard Children’s Hospital Stanford, two-month-old baby Liam, who just went home to San Jose last week, is beating those odds.

He is the first baby in the world successfully treated with prenatal maternal hyper-oxygenation for his rare heart defect: congenital Ebstein’s anomaly. This week, several local news outlets report on the success of Liam’s case.

The problem at diagnosis? Due to severe leaks in two heart valves, blood flowed backward through the right half of Liam’s heart. His heart became dangerously enlarged. Too little blood reached his lungs and the rest of his body. Left untreated, the defect would cause irreparable heart and lung damage.

“Once you see type of leakage Liam had, it’s usually a progressive process,” said Theresa Tacy, MD, the fetal cardiology specialist who treated Liam in concert with his mom’s high-risk obstetrician, Katherine Bianco, MD, and a team of other specialists from across the hospital. “It just gets worse,” Tacy said. “The fetus eventually develops heart failure and dies.”

The team gave expectant mom Luna 12 hours per day of oxygen therapy for the last three weeks of her pregnancy. The idea was to relax Liam’s lung blood vessels with the extra oxygen he’d get from his mom. This would make it easier for his heart to pump blood forward into his lungs and, the doctors hoped, let him survive until birth and surgery.

Ebsteins vs normal by Tacy“We were trying to offer Liam’s parents hope but also remain realistic that their baby had a very high chance of not making it,” said cardiologist David Axelrod, MD, who cared for Liam in the cardiovascular intensive care unit after he was born. “We knew that even if he made it through pregnancy, his risk of dying during his first few days of life was very high.”

Immediately after his Nov. 22 birth, the doctors put Liam on an ECMO machine that delivered oxygen to his blood. Cardiothoracic surgeon Frank Hanley, MD, also closed a blood vessel near the heart to help Liam’s blood to flow forward. Finally, 11 days later, Liam was strong enough for a Dec. 3 surgery in which Hanley fully repaired his heart.

“It was a huge operation for a tiny baby fighting for his life,” Luna said. “The seven-hour wait during surgery was the longest wait of my life, but when they finally wheeled him out, he was a different baby. We were so thankful.”

Continue Reading »

Medical Schools, Patient Care, Stanford Medicine Unplugged

What happens when you can’t communicate with your patient?

What happens when you can’t communicate with your patient?

Stanford Medicine Unplugged (formerly SMS Unplugged) is a forum for students to chronicle their experiences in medical school. The student-penned entries appear on Scope once a week during the academic year; the entire blog series can be found in the Stanford Medicine Unplugged category.

Medical-f

Over the past eight months, I’ve rotated at the Palo Alto VA, Santa Clara Kaiser, Stanford outpatient family medicine and pediatrics clinics, and most recently, at Santa Clara Valley. At the VA and Kaiser, all my patients spoke English. Occasionally, at Stanford’s outpatient sites, our patients spoke a language other than English; however, this never felt like a barrier to care because Stanford had phone interpreters available, as well as iPads on wheels that you could use to videoconference in an interpreter. These resources made it feel as though the interpreter was right there in the room with us. And indeed, they could not only hear the patient’s words but also see their expressions, adding an extra dimension to the interpreting services they generously provided.

Valley, however, felt like a different world. As a county hospital, Valley doesn’t often have the luxury of flashy resources. I spent this past month there, on my general surgery/trauma rotation. On morning rounds each day, we would check on each one of our patients, asking whether their pain was under control, if they were able to eat post-surgery, if they had walked around the ward to get back to their baseline activity level, and more. These rounds would take place as early as 6:15 a.m., and they were efficient, since operating room cases would begin at 7:30 a.m.

At various point in the month, our Valley team had patients who spoke only Spanish, only Korean, only Cantonese, and only Vietnamese. Sometimes, we got lucky, and a member of the nursing staff spoke one of these languages. But at other times, we worked through hand gestures and simple words to try and ascertain patient pain, symptoms, etc. Phone interpreters were an option, but the early timing and rapid pace of rounds made it cumbersome to call an interpreter. We usually circled back in the afternoon with a phone interpreter – and if we happened to have multiple traumas that came into the hospital that day, it would be later rather than earlier that we returned to the patient’s bedside. Putting myself in patients’ shoes, I imagine how frustrating it must have been for them, to feel both dependent on the medical team for care as well as helpless to communicate how they felt and what they wanted.

I began to think about how this problem could be fixed, and my thoughts took me back to my middle and high-school years. In middle school, I was required to take at least one foreign language. I chose Spanish and continued taking Spanish throughout high school (then promptly forgot everything when I went to college, making me rather useless on surgery rounds). Wouldn’t it be useful to have a similar language requirement in medical school? I don’t mean a comprehensive foreign language course. Instead, I think it would be meaningful to know key words and phrases – Do you have pain? Are you able to eat? Where does it hurt? – in, let’s say, the ten most common languages spoken in the particular geographic region a medical school is located in.

I know, I know, medical school curricula are already teeming with courses and requirements, and adding a language requirement feels like just one extra thing. But, if it makes a valuable difference in patient care, isn’t it a worthwhile addition? It’s certainly something to ponder. As for me, I just downloaded Duolingo on my iPad, so if you catch me awkwardly practicing my Spanish out loud in any one of my favorite Palo Alto cafés, you’ll know why!

Hamsika Chandrasekar is a third-year student at Stanford’s medical school. She has an interest in medical education and pediatrics. 

Photo courtesy of Bill Pugin, The Sign Language Company

Ethics, Health Policy, Patient Care

Small number of physicians account for many malpractice claims

Small number of physicians account for many malpractice claims

gavel01-lgA small number of physicians account for a disproportionately large number of malpractice claims in the United States, Stanford medical and law researchers found after examining 10 years of medical data.

The ability to identify these claim-prone physicians early would be invaluable, the researchers write in a paper published today in The New England Journal of Medicine.

David Studdert, ScD, professor of law and of medicine, and Michelle Mello, JD, PhD, professor of law and of health research and policy — who are also core faculty members of Stanford Health Policy — conducted the study in collaboration with researchers from the University of Melbourne, Australia.

The team found that just 1 percent of practicing physicians accounted for 32 percent of paid malpractice claims over a decade. The study also found that claim-prone physicians had a number of distinctive characteristics. Studdert, lead author of the study, explains:

The degree to which the claims were concentrated among a small group of physicians was really striking. But the fact that these frequent flyers looked quite different from their colleagues — in terms of specialty, gender, age, and several other characteristics — was the most exciting finding. It suggests that it may be possible to identify problem physicians before they accumulate troubling track records, and then do something to stop that happening.

Male physicians had a 35 percent higher risk of recurring claims than female physicians, and the risk of recurrence among physicians younger than 35 years old was about one-third the risk among their older colleagues, the study found.

Continue Reading »

Cancer, Patient Care, Stem Cells, Transplants

The inside scoop on bone marrow transplants

The inside scoop on bone marrow transplants

blood-156063_1280Your bones harbor blood manufacturing factories. Those factories, packed in the bone marrow, produce stem cells that develop into red blood cells, white blood cells and platelets. Cancers such as leukemia and a few genetic conditions can weaken the bone marrow, necessitating a bone marrow transplant.

Witold Rybka, MD, director of the Bone Marrow Transplantation Program at Penn State Hershey, fielded questions recently in this Q&A on the procedure. An excerpt:

What are the most common types of bone marrow transplants?

For an autologous transplant, the patient can bank his or her own stem cells before undergoing intensive treatment for certain diseases such as lymphoma, Hodgkin’s lymphoma or multiple myeloma. The patient’s body can then use its own banked stem cells to regenerate healthy marrow once treatment is complete. Other transplants are allogeneic, meaning that the patient must receive matching stem cells from a sibling, family member or unrelated donor.

What are the odds of finding a match within one’s own family?

The chance of finding a full match is one in four, so the larger your family, the better chance you have of finding a match among your relatives. Given the size of most American families, most donors must use an unrelated match from a registry of more than 17 million living donors worldwide.

Unfortunately, it’s possible that a patient who needs a bone marrow transfusion won’t get one. Most banked stem cells are from donors in North America and Europe, making it easier for white patients to find a match. For patients of other ethnicities, the chance of finding a donor is only 60 percent, Rybka said.

To learn more about bone marrow transplants, visit Be The Match.

Previously: Bone marrow transplantation: The ultimate exercise in matchmaking, Bone marrow transplantation field mourns passing of pioneer Karl Blume and One (blood stem) cell to rule them all? Perhaps not, say Stanford researchers
Image by OpenClipartVectors

Ask Stanford Med, Pain, Patient Care

Headache 101: On migraines, pain medicine and when to visit a doctor

Headache 101: On migraines, pain medicine and when to visit a doctor

stress-543658_1280I’m a stomachache gal; when something is troubling me, my tummy lets me know. So I’ve always felt a mixture of curiosity and puzzled empathy for those who suffer from frequent headaches or migraines — how odd and awful that must be.

As the founding director of Stanford’s Headache and Facial Pain Clinic, and a migraine sufferer himself, Robert Cowan, MD, is well-positioned to offer headache guidance (and insight for outsiders like me).

He recently chatted with writer Sara Wykes for an Inside Stanford Medicine piece on migraines, pain medicine and more. Here’s Cowan:

A migraine is much more than a headache. It occurs on average one to four times a month. Unlike a tension headache, it is often accompanied by nausea or vomiting. Its pain is intensified by physical activity and is so severe it interferes with daily activities. About 30 percent of migraineurs — people with migraine — have a warning that consists of neurologic signs, or auras, they experience before the migraine episode begins. The most commonly experienced aura is visual, during which patients see small, colored dots, flashing bright lights or multicolored zigzag lines that may form a shimmering crescent-like shape.

The best way to cope with migraines and other headaches is not to keep pounding pills, Cowan cautions:

The vast majority of headaches should not be treated with opioids or any other pain medications. It depends upon what kind of medicine you are taking, of course, but a good rule of thumb is not to take any pain medication more than two days in any week, and no more frequently than recommended on the label or as prescribed. If you need more medication to control pain, you should consult a physician. Overuse of acute medications can actually increase the frequency of your headaches.

Cowan says the best approach to minimizing headaches may be to pay attention and log symptoms such as irritability or a food craving that may appear right before a headache starts. “You may begin to see patterns that were not readily obvious,” he advises.

Previously: Study examines trends in headache management among physicians, More attention, funding needed for headache care and Director of Stanford Headache Clinic answers your questions on migraines and headache disorders
Photo by geralt

Education, Patient Care, Technology, Videos

Physician-writer Abraham Verghese on ritual, technology and medical training

Physician-writer Abraham Verghese on ritual, technology and medical training

stethoscope-448614_1280Listening to Abraham Verghese, MD, is always a treat, so I quickly clicked on a recently published Q&A featuring Verghese in conversation with Steven Stack, MD, president of the American Medical Association.

Of particular interest were comments on changes in the training of medical students. Here’s Verghese:

There have been some striking changes. For one thing, the model that you probably trained under and certainly I trained under — an intense focus on the patient and the bedside and rounds going from bed to bed — I think it’s been sort of kidnapped in a sense by the workstation.

One of the great disappointments students have when they come on the wards is… in the first two years they’re learning physical diagnosis, and they’re so excited to learn how to read the body as a text. And they arrive on the wards, and their moment of awakening, almost disillusionment, is to find that the currency on the wards does not revolve around the patient. It revolves much more around the computer. For many of them, it’s a moment of crisis. I think it actually leads many of them away from primary care, which is not a good trend.

Verghese also weighs in on the importance of touch and how a physical exam is a ritual akin to baptism or graduation. Two videos round out the post, where Verghese and Stack (the youngest AMA president since 1854!) discuss the excessive use of tests and Verghese’s motivation to begin writing books.

Previously: Abraham Verghese: “It’s a great time for physician leaders to embrace design thinking”, Abraham Verghese: “There is no panacea for an investment of time at the bedside with students and Physician-author Abraham Verghese encourages journalists to tell the powerful stories of medicine
Photo by HolgersFotografie

 

Aging, In the News, Medicine and Society, Palliative Care, Patient Care

End-of-life discussions the focus of PBS piece

End-of-life discussions the focus of PBS piece

For many, end-of-life discussions are either unpleasant, brief, or unlikely to happen at all. But, as a recent episode of PBS’ Religion and Ethics NewsWeekly emphasized, it is critically important that patients have open and honest conversations on the topic with their family members and doctors.

The piece featured Philip Pizzo, MD, former dean of Stanford’s medical school and co-author of the 2014 Institute of Medicine’s 500-page report titled “Dying in America,” and VJ Periyakoil, MD, director of Stanford’s Palliative Care Education and Training. Through the Stanford Letter Project, Periyakoil is on a quest to empower patients and help stimulate a broad national discussion on what matters most at life’s end. She says in the piece:

I think the biggest challenge is people don’t want to make plans and have discussions because the topic is so threatening to them. So what happens is because they don’t plan for it, they are subjected to treatments that are A, not helpful and B, not what they want.

I helped facilitate the interviews with Periyakoil and Pizzo last October; coincidentally around that time, my older sister suddenly fell ill and died unexpectedly. One of the things that came up was whether or not she had an advance directive and, fortunately for my family, my sister (who was just 46 years old) had written down her wishes and no one was left wondering or tasked to make a difficult decision. I know firsthand how beneficial the work of Periyakoil and others can be.

Previously: No one wants to talk about dying, but we all need toStudy: Doctors would choose less aggressive end-of-life care for themselvesHow would you like to die? Tell your doctor in a letter, Stanford doctor on a mission to empower patients to talk about end-of-life issues and Medicare to pay for end-of-life conversations with patients

Patient Care, Pediatrics, Public Health

Superheroes to the rescue: A creative approach to educating kids about asthma

Superheroes to the rescue: A creative approach to educating kids about asthma

Asthma affects more than 6 million children and leads to approximately 1.8 million visits to the emergency room annually in the United States, according to the Centers for Disease Control and Prevention.

In order to effectively manage asthma and help eliminate trips to the emergency room, physicians must identify the correct daily control and emergency rescue medications for their patients. However, educating young patients and their families is also critical.

“Patient education needs to be done at every visit,” Richard Moss, MD, professor of pediatrics, emeritus at Lucile Packard Children’s Hospital Stanford, recently told me. “This includes a review of the asthma symptoms, proper use of medications, written action plan, test results and educational handouts. The key is continuity of care and reiteration of important information at every visit.”

Last month, NBC News featured the work of an Illinois physician who has taken a non-traditional approach to patient education. Alex Thomas, MD, a cartoonist and pediatric allergist at the Center for Asthma and Allergy, created a multimedia asthma education program called Iggy and the Inhalers, which includes comic books, YouTube videos, posters, trading cards and stickers. I recently spoke with Thomas about this program and Booster Shot Comics, a partnership between Thomas and a health-communication specialist.

What motivated you to create the Iggy and the Inhalers comic book?

I started drawing Iggy characters when I was 11 years old. I grew up with asthma myself, so I drew as a way to understand my medications – turning them into superhero characters. My mom is an allergist, and she had a patient support group for kids with asthma. So I started drawing little comic strips about Iggy in the support group newsletter.

An interest in asthma and asthma education ultimately led me to go to medical school and become a pediatric allergist. When I was working on the pediatric wards, I noticed that a lot of kids were being admitted and readmitted to the hospital for asthma exacerbation due to confusion about their medications. So I eventually revisited my Iggy characters to create educational materials for physicians and patients, with the help of health communication specialist Gary Ashwal.

Can you describe the characters in Iggy and the Inhalers?

Iggy the Inhaler is the main character who teaches kids about the physiology of asthma. He has two teammates. One is Broncho the Bronchodilator, a rescue inhaler for quick relief of symptoms. The other partner is Coltron the Controller, a control inhaler that kids with persistent asthma need to take on a daily basis. There are also asthma trigger villains: Smokey Joe, Moldar, Pollenoid, Dust Mite, Roach and Hairy.

We wanted to create dynamic characters that embodied the mechanism of the medications that they represent, so kids can intuitively understand how the medications actually work. When kids look at a rescue inhaler, they imagine Broncho loosening the muscle bands around the airway because he’s a cowboy with a lasso. Whereas when they look at a control inhaler, they imagine Coltron decreasing inflammation inside the airways using his fire extinguisher arm.

Continue Reading »

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

NBC Dateline to explore the “extraordinary situation” facing one Packard Children’s transplant family

NBC Dateline to explore the "extraordinary situation" facing one Packard Children's transplant family

Bingham family - 560

It’s a story that seems a bit hard to believe.

Stacy and Jason Bingham of Haines, Oregon, have five beautiful children — Sierra, Megan, Lindsey, Hunter, and Gage. Unfortunately, as written about on Scope previously, three of the kids have been hit with cardiomyopathy, a life-threatening disease of the heart muscle that reduces the heart’s ability to pump blood effectively. Two other children are being monitored for heart irregularities.

The result? The eldest, 16-year-old Sierra, has received two heart transplants at Lucile Packard Children’s Hospital Stanford, one in 2006 and a replacement in 2015. Lindsey, 12, had a heart transplant in 2013. Gage, 7, was recently placed on a Heartware ventricular assist device in order to support his failing heart. He is now awaiting placement on the transplant list. Meanwhile, cardiologists are keeping an eye on any potential problems that could be faced by Megan, 14, and Hunter, 9.

“This is an incredibly strong and wonderful family, and they’re facing an extraordinary situation,” said David Rosenthal, MD, director of the pediatric heart failure program at Packard Children’s.

This Sunday, January 17, at 9 PM Pacific, Dateline NBC will be presenting their second national broadcast looking at the personal and medical journey the Binghams have faced, along with the many challenges ahead. In addition, the program will reveal some of the advanced therapies for heart failure offered by the Heart Center at Stanford Children’s Health.

The first Dateline NBC program on the Bingham family, which aired in 2013, can be viewed here.

Robert Dicks is senior director of media relations for Lucile Packard Children’s Hospital Stanford.

Previously: Ventricular assist device helps teen graduate from high schoolStem cell medicine for hearts? Yes, please, says one amazing family and Packard Children’s heart transplant family featured tonight on Dateline
Photo by Norbert von der Groeben

Education, Patient Care, Stanford Medicine Unplugged

As long as I have these hands

As long as I have these hands

Stanford Medicine Unplugged (formerly SMS Unplugged) is a forum for students to chronicle their experiences in medical school. The student-penned entries appear on Scope once a week during the academic year; the entire blog series can be found in the Stanford Medicine Unplugged category

clasped-hands-541849_1920

In neurology clinic, I was asked to see a young man with epilepsy — a seizure disorder — due to cerebral palsy from birth. It was one of my first clinical encounters of my first rotation of medical school, the tenuous transition from knowledge-absorber to translator and caretaker. I walked in to find a patient who was wheelchair-bound and largely non-verbal, and who interacted with the world by tracking gaze and moving his arms. He held a toy in one hand that he rotated constantly; the other lay limp on the side of the chair.

I read in the medical record that he attended a day program where he enjoyed watching other children play ball and liked giving high-fives. So instead of launching immediately into an interview of his parents for recent medical symptoms, I asked my patient for a high-five.

At first he didn’t respond, his body like stone. The father patted him on the chest several times, hard, signaling to his son to make the movement while asking him in Spanish to do so. I winced at the vigor of each tap. But soon the young man responded. He put out his hand towards mine, his eyes locked on me, and we high-fived, softly and repeatedly. When I move my hand higher, or to the side, he followed excitedly, and he did not want to stop high-fiving me until the visit ended. “He likes you,” the father said, his fiercely protective expression softening a bit.

When my portion of the interview was over, the supervising neurologist entered the room. After ensuring that the patient’s seizures were under good control, the doctor asked if the family wanted to consider an injection that would help reduce the young man’s oral secretions.

“Won’t that give him a dry mouth?” asked the father. “I don’t want him to suffer. I don’t want his mouth to be dry.” There was so much history to his mistrust; when the doctors had previously offered a surgery to help improve his son’s ability to walk, the son had ended up in this wheelchair. The mother shook her head before the words even left the doctor’s mouth, her red lips pursed. She looked at me imploringly, as if I would understand.  “No, no, no,” she said, holding up her arms to me. “As long as I have these hands, I can clean his drool.” Then, to the doctor, “I don’t mind.”

The doctor inquired again, suggesting that the oral secretions might be minimized by this injection and that it wouldn’t be permanent. “As long as I have these hands,” the mother said again, and I could read the depths of her care by the way she held her hands in the air, emphatically, hands that had mothered a son for many more years than she could have ever anticipated, but hands that had done so patiently, willingly, with no hesitation. Her hands will wipe his drool, no matter how much drips out of the corner of his mouth. She does not mind.

Now that I have completed most of my medical school rotations, I find myself returning to the phrase as long as I have these hands.

Continue Reading »

Stanford Medicine Resources: