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Cardiovascular Medicine, Events, Patient Care, Stanford News

Honoring doctors, nurses of the early days of Stanford’s coronary care unit

Honoring doctors, nurses of the early days of Stanford’s coronary care unit

image.img.320.highWhen I was in the hospital recently to give birth to my daughter, I saw my doctors briefly during their rounds, but it was the nurses and nurse midwives who primarily cared for me. So when I read in a recent Inside Stanford Medicine feature story that 50 years ago, nurses weren’t even allowed to perform tasks like start IVs, I was shocked.

In the 1960s, Stanford was home to one of the earliest coronary care units, led by Alfred Spivack, MD. Spivack taught the nurses working on the unit to take on tasks that were, at the time, mainly done by physicians. Joan Fair, PhD, RN, who was one of the unit’s original nurses and is now a cardiovascular researcher, recalls:

“Some doctors were totally against nurses doing these kinds of things… It also took time for some doctors to accept our opinions about how their patients were doing, or if we saw a problem and called them and asked them to take a different line of treatment.”

Joan Mersch, MSN, the unit’s former nurse coordinator, described in the piece how beneficial this extra training was to patients. “When you know how to read electrocardiograms, recognize lethal cardiac rhythms, perform resuscitation and defibrillation — it saves patient lives,” she said. “You understand what needs to be done, and you can take action.”

A big proponent of using technology to improve care, Spivack depended on the nurses to learn how to use the devices and incorporate them in the daily care of patients. And he also encouraged the nurses to pursue their research interests; many, like Fair, went on to obtain graduate degrees.

Last month, almost two dozen former nurses from the unit came together for a dinner celebrating a major gift from Spivack, which will pay for the nurses’ station in the new heart acute care unit when the new adult hospital opens in 2018.

Photo by Steve Fisch

Big data, BigDataMed15, Events, Patient Care, Research, Stanford News, Technology

Experts at Big Data in Biomedicine: Bigger, better datasets and technology will benefit patients

Experts at Big Data in Biomedicine: Bigger, better datasets and technology will benefit patients

population health panelThe explosion of big data is transforming the way those in health care are diagnosing, treating and preventing disease, panelists at the Big Data in Biomedicine said on its opening day.

During a five-member panel on population health, experts outlined work that is currently being done but said even bigger datasets and better technology are needed to ramp up the benefits from digital data and to save lives.

“Using the end-of-millions to inform care for the end-of-one – that is exactly where we’re going,” said Tracy Lieu, MD, MPH, director of research at Kaiser Permanente Northern California, a health-care network that includes 21 hospitals, 8,000 physicians and 3.6 million patients. “And we think that in a population like ours, in an integrated system like ours, we are in an ideal setting to do personalized medicine.”

Stanford Medicine professor Douglas Owens, MD, director of the Center for Health Policy and Center for Primary and Outcomes Research, led the panel on Wednesday. He said that big data is also changing how research is being conducted.

“There’s been an explosion of data of all kinds: clinical data, genomics data, data about what we do and how we live,” said Owens. “And the question is how can we best use that data to improve the health of the individual and to improve the health of populations.”

Lieu said two key trends are central to medical researchers: informatics and genomics. She told attendees that Kaiser utilizes a “virtual data warehouse” with the digital data of 14 million patients dating back to 1960. But Lieu cautioned that the data are not always the means to an end, particularly if the findings are not tested and implemented.

“Sometimes we fail. And we fail when we identify a problem of interest, we make a decision to study it, we assemble the data, we analyze and interpret the results – and then we send them off to journals. So we fail to close the loop,” she said, because researchers typically don’t go beyond the publication of data.

Lieu said Kaiser is now focused on trying to close that loop. “To do that, we need the kinds of tools that you in this group and the speakers at this conference are developing,” she explained. “We need better and better technology for rapidly analyzing and aggregating data.”

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Events, LGBT, Medical Schools, Medicine and Society, Patient Care

Advice for clinicians on addressing gender- and sex-related issues

Advice for clinicians on addressing gender- and sex-related issues

2633907150_6303146d75_zFor great patient care, a doctor needs to understand the patient’s life and the patient needs to feel comfortable sharing. This can be especially challenging when it comes to the LGBT community, which was part of the impetus for a talk on the Stanford Medicine campus last week. The event focused on challenges faced by sexual and gender minorities (SGM) in medicine, not just as patients, but as physicians and medical students as well.

Matthew Mansh, a fourth-year Stanford medical student; Gabriel Garcia, PhD, professor of medicine and associate dean of medical school admissions at Stanford; and Mitchell Lunn, a research fellow at UCSF and a graduate of Stanford’s medical school, are all part of Stanford’s LGBT Medical Education Research Group. After hearing the three speak, I walked away with a greater understanding of how important and challenging it is for doctors to have intimate conversations with their patients.

Of the three, Lunn’s talk was the most oriented towards helping practitioners be more sensitive about  He began by laying out some terminology (terms are moving away from assuming two genders – bisexual is falling out of favor, for example), but emphasized that even the most sophisticated labeling won’t tell you which organs patients have or which sex acts they’re doing. Providers have to ask and be comfortable with the terms they should use to ask, Lunn said.

Coming from an anthropology background, I know how hard it can be to not make assumptions. But Lunn emphasized that it’s crucial for clinicians to try: Patients overwhelmingly answer when asked about things in their lives, and they subsequently receive better care, such as screenings for HIV and hepatitis. Among the barriers to providers asking about sex and gender practice/expression are fears of being intrusive, cultural differences, ignorance regarding the clinical relevance of such questions, patient’s lack of genital complaints, and uncertainty of how to ask. Most of these can be combated with provider education; as for how to ask, Lunn says it doesn’t matter as long as the doctor’s questioning makes no assumptions and is the same for everyone.

Intake forms could ask preferred pronouns, for example. Stigmatizing language like “atypical practices” and questions like “Are you married?” should be avoided. Questions about sex and gender practices can be grouped with those about drug use, wearing a seat belt, and going to the dentist – the goal is to normalize these conversations; people don’t want to be targeted or singled out. In every intake visit, Lunn says to his patient: “I talk to my patients about gender identity – do you know what I mean by that?” Crack the door like this and most who are gender nonconforming will go through it, he assures.

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Medical Education, Medicine and Literature, Patient Care, Pediatrics

Stanford Storytellers: Medical students write a children’s book to comfort and educate

Stanford Storytellers: Medical students write a children's book to comfort and educate

hospitalcolorThis spring, four Stanford medical students wrote a children’s book, Stanford Storytellers, which uses imagination to help children understand and feel comfortable in the hospital.

Authors Afaaf ShakirMichael Nedelman, Karen Hong, and Zahra Sayyid, along with illustrator Emma Steinkellner, a Stanford undergraduate, came together through a call for interested Stanford Medicine students to collaborate on a children’s book in honor of this year’s Medicine and the Muse symposium’s keynote speaker, Perri Klass, MD. Klass is a professor of journalism and pediatrics at New York University and a children’s author who is involved with Reach Out and Read, a non-profit encouraging early childhood literacy in pediatric clinics.

“Funny enough,” Nedelman told me, “all the med students who showed up to the [book] meeting were my classmates – third-years who should’ve probably been falling asleep on a couch somewhere. Things really clicked when we found Emma, whose visual style was perfect for the project.” I recently spoke with Nedelman and the other group members over email, as coordinating their busy schedules was like herding cats!

Where does your perspective on a hospitalized child’s experience come from? 

Hong: I’m currently on my pediatrics rotation and I see a lot of children who would get some reassurance from a book like ours. Just today, I was talking to a little boy who really wanted to take his IV out. You have to keep your arm straight for days on end and deal with the uncomfortable feeling of having a needle in your arm – who would want that if they didn’t understand why it’s there? We talked about how the clear plastic tube delivers a magic “potion” into his system to fight off his infection and it was amazing how fast his attitude changed. This isn’t always the case with every patient but it’s nice to see the power of imagination at work.

Sayyid: I remember distinctly the first book series that I couldn’t put down: Lurlene McDaniel’s young adult books, which focused mainly on girls who were struggling with chronic illnesses and death. Each of her stories focused on a different girl with a different disease, almost all of which were fatal. Although I luckily did not experience much time in the hospital as a child, I remember reading those stories and thinking, “Wow, this could have been me.”

Shakir: I grew up in a house with two pediatrician parents, which meant I never went to a doctor’s office, let alone a hospital. It wasn’t until I came to medical school that I realized that kids without physician parents have a totally different take on medicine than I did. It’s completely unfamiliar to them, and things aren’t often explained in a way that a kid can understand. That perspective has fueled me to empower patients (both adults and kids) with knowledge about their care and their bodies. In addition, being in medical school gives us the unique perspective of being young in our training (the ‘kids’ of medicine) where things are still new and strange, but also being medical ambassadors for our patients. We have enough knowledge to explain concepts without forgetting what it was like to not understand them. Writing this book has been a great reminder of the importance of that communication.

hallwayWho do you hope will read the book? How do you hope it will be distributed?

Nedelman: There are lots of people I’d love to see connect with the book: The 5-year-old chemo patient, seeing the hospital through a new lens. Or his classmates, who may not understand why he always seems to be missing class. Or the attending physician, perhaps with young kids, who understands that a little bit of imagination can really help reframe an unfamiliar and at times uncomfortable experience.

Shakir: Our ultimate hope is that our book reaches the children we are writing it for. We intentionally made our protagonist a character who was easily accessible to as many kids as possible.

Nedelman: We don’t know what condition this character has; it’s all in first-person so even the child’s gender is interpretable by the reader. And even though our protagonist is seen flying, floating in space, and rolling in a wheelchair, we actually never see this character walking around.

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Patient Care, Pediatrics, Research, Stanford News, Technology

A new tool for tracking harm in hospitalized children

A new tool for tracking harm in hospitalized children

Medical-chartsIn the 15 years since the Institute of Medicine issued its groundbreaking report showing frequent harm caused by medical care, researchers have worked to devise efficient, reliable ways to detect harm to patients. Finding out what aspects of care most often hurt patients is a key step in reducing these harms, but voluntary reports, in which caregivers are asked to document harm they cause, only identify a small percentage of total harms.

New research published today in Pediatrics describes a better approach for tracking harm to kids in hospitals. Using the system on 600 medical charts from six U.S. children’s hospitals, the researchers found that almost 25 percent of patients included in the chart review had experienced at least one harm, and that 45 percent of these harms were probably preventable. The approach, called a “trigger tool,” was based on a similar harm-tracking method designed for hospitalized adult patients. Researchers look at each medical chart for “triggers” – events or lab measurements often associated with harm – and when they find a trigger, explore the medical chart in detail around the time of the trigger to see if harm occurred.

“This tool will allow us to better understand the epidemiology of harm in hospitalized children, as well as give us the capacity to track harms over time to determine if our interventions are making an improvement,” said senior study author Paul Sharek, MD, an associate professor of pediatrics and chief clinical patient safety officer at Lucile Packard Children’s Hospital Stanford and Stanford Children’s Health. He collaborated with scientists from several other institutions on the research.

I talked with Sharek last week about the study’s findings and implications. To start, I asked him to give me an example that would help me understand the difference between preventable and non-preventable harm. A child who receives a medication that provokes an allergic reaction has experienced a non-preventable harm if it’s the first time the child ever got the drug, and there were no clues beforehand that she had the allergy, he told me. But if the drug allergy was already known and the patient got the drug anyway and had an allergic reaction, that is a preventable harm.

The high rate of preventable harms shows that there is a lot of room to make all hospitals safer for kids, Sharek said. One surprise in the data was that nine common healthcare-acquired conditions that have been targeted by national safety efforts – including central line-associated bloodstream infections, ventilator-associated pneumonia and surgical site infections – together accounted for only 4 percent of all harms identified in this study. “If we were able to eliminate every one of these, according to these data, we’d still be left with 96 percent of the harms we identified,” Sharek said.

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Events, Patient Care, Stanford News

Stanford Medicine 25 Skills Symposium to focus on building leaders for the bedside medicine movement

Stanford Medicine 25 Skills Symposium to focus on building leaders for the bedside medicine movement

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Physicians once relied on the five senses to diagnose patients and used sight, touch, sound and smell to assess health and identify illness. Today, medical technologies are often doctors’ first diagnostic tool.

In this age of increased reliance on technology, how can health practitioners reconnect with their patients at the bedside? And how can medical educators promote a culture of hands-on medicine?

These questions will take center stage Sept. 28-29 at the inaugural Stanford Medicine 25 Skills Symposium. The symposium will feature thought leaders in bedside medicine, including Stanford physician-author Abraham Verghese, MD; Steve McGee, MD, a professor of medicine at the University of Washington and Andrew Elder, FRCP, a consultant in acute medicine of older age at the Western General Hospital in Edinburgh.

“We are hoping to attract junior and mid-career faculty who are interested in the art of teaching at the bedside,” said John Kugler, MD, an assistant professor of medicine and co-director of the Stanford Medicine 25 Skills Symposium.

During the two-day event, attendees will learn to improve their physical exam technique, develop bedside teaching skills, and master clinician demonstrations. Several sessions will help attendees identify ways to foster a culture of bedside medicine at their home institutions. “Every attendee will leave with the skills and knowledge to confidently take trainees to the bedside,” Kugler explained.

The symposium will continue beyond September 29 by way of regular virtual meetings where participants will be able to exchange ideas and continue the conversation about bedside medicine.

To learn more about the Stanford Medicine 25 program and to register for the event, visit the symposium website.

Lindsey Baker is the communications manager for Stanford’s Department of Medicine.

Previously: Abraham Verghese a saintliness in so many of my patients, Stanford’s Abraham Verghese honored as both author and healer, A call for extended bedside manner training and Abraham Verghese discusses reconnecting to the-patient at the bedside
Photo by Guson Kang

Chronic Disease, Genetics, Patient Care

Navigating a rare genetic disorder with a positive attitude

Navigating a rare genetic disorder with a positive attitude

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 column comes from Carla Charter.

roam-1024x1024Seven years ago, when my youngest child was diagnosed with chromosome 12q duplication syndrome, I learned that I too had the syndrome. It’s a rare condition caused by the abnormal duplication of the long arm of chromosome 12, leaving three copies rather two.

At that point the 12q was more of a footnote to my hectic life. Syndrome or not, life went on. There was work and the children and hundreds of other things to think about, none of which the 12q really affected.

The syndrome that hadn’t affected my life too much reared its ugly head two years ago while I was driving home one night. In an instant, a highway exit disappeared from view and came back, giving me an extreme “What the heck was that?” moment. Little did I know that this episode was about to usher me into the world of visual impairments. I now have forearm crutches to help me walk. My visual distance impairment changes are frequent, and I have slight hearing loss.

Because I’m an advocate for people with disabilities, some praise me as inspirational. But I am not inspirational. I am human. There are days when I feel frustrated, overwhelmed with the changes in my life, and even a little cranky. It’s OK to admit it, because I’ve got a family who loves me through all of it. If I seem a little quiet or snappy, you may be meeting me on an off day. We all have off days — disability or not.

Those of us with disabilities also have our own way of coping with them. For me, it’s humor. It’s the reason I had a bright pink cane for a time. If I was going to have to deal with using a cane because of the 12q, I was going to find the brightest prettiest cane I could find and rock the heck out of the 12q.

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Ethics, In the News, Patient Care, Pediatrics

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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AHCJ15, Cancer, Chronic Disease, Events, Medicine and Society, Palliative Care, Patient Care

Looking at cancer as a chronic illness

Looking at cancer as a chronic illness

6903202302_d9740cc15b_zMany of us think of cancer as a terminal illness, but as treatments have become more sophisticated, more and more people are living longer with cancer. So is it becoming a chronic condition like rheumatoid arthritis or insulin-dependent diabetes? A panel at this past weekend’s Association of Health Care Journalism 2015 conference addressed this question, starting with a metaphor that has really lodged itself in my brain: the Niagara Falls approach.

After she was diagnosed with stage-four breast cancer and her oncologist asked her what she wanted to accomplish, Amy Berman, RN, a grantmaker and senior program officer at the John A. Hartford Foundation, replied,”I want to do ‘Niagara Falls.'” For Berman, Niagara Falls means continuing to live with as high a quality of life as possible, and then when such quality is no longer sustainable, dramatically dropping to the inevitable end point. By contrast, a different oncologist had announced to her that they should fight the thing full-force, do everything possible to beat it, including a double mastectomy and chemotherapy until her body could no longer handle the toxicity. Berman thought this would be an inverse Niagara Falls, dramatically reducing her quality of life and then dragging on to the inevitable end.

Berman, who is something of a cancer celebrity, has lived nearly 5 years post-diagnosis at 11-20 percent odds, and she has never been hospitalized. She was beaming during her panel. “I look good,” she said, as the chuckling audience caught her joie de vivre. “And I feel the way I look.”

Berman made the point was that “as our nation ages,” providers need to have serious discussions with patients, not shield them from the truth through rosier prognoses. We need to debunk the myth that palliative care means giving up or accepting a shorter life, she said – rather, it focuses on quality of life and what’s important to patients. It also shifts care from hospital to home, and in doing so saves money: Berman passed up an estimated $1 million in treatment over the past 4 years. “This is how we need to think about care,” she said. “Managing people to live well with serious illness… My cancer cannot be cured, but I’m also not dying today.”

George Sledge, MD, professor of oncology at Stanford, a member of the Stanford Cancer Institute, and a medical writer, is on the same page about palliative care. He said he considers it a success if his patients never go to the hospital. But that doesn’t mean he brushes off the ways in which cancer is different than truly chronic diseases.

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