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Events, Medicine and Society, Patient Care, Stanford News

Author-physician Atul Gawande on dying and end-of-life care

Author-physician Atul Gawande on dying and end-of-life care

Dr Atul Gawande, MD, MPH, Professor, Department of Health Policy and Management Harvard School of Public Health Harvard Medical School, gives a lecture ?Being Mortal: Medicine and What Matters in the End? on Monday, March 2, 2015, at Cynthia and Alexander Tseng, Jr., MD, Memorial Lectureship at Berg Hall Li Ka Shing Learning and Knowledge Center at Stanford School of Medicine . ( Norbert von der Groeben/ Stanford School of Medicine )When Atul Gawande, MD, MPH, witnessed the untimely and inevitable passing of patients, friends and his father, the shortcomings of our medical system’s approach to dying were revealed to him. As the noted author and surgeon told an overflow crowd at Stanford’s medical school earlier this week, he became inspired to “pick up my journalist’s pen” and explore questions about life and mortality that his elite medical education hadn’t equipped him to remedy.

Headlining the eighth annual Cynthia and Alexander Tseng, Jr., MD, Memorial Lecture, the former Stanford undergrad introduced his talk on end-of-life issues with the observation that begins his New York Times #1 book, Being Mortal: “I learned about a lot of things in medical school, but mortality wasn’t one of them.”

In a highly personal, and at times moving, talk, Gawande went on to discuss how decades of modern medical advances have changed our attitudes about dying and death. As fewer diseases and injuries pose life-threatening risks due to vastly improved medications and therapies, people simply expect to live longer. Well-being has become synonymous with longer and more robust life, supported at every stage by effective medical interventions, including a growing market of “lifestyle” rather than life-saving treatments.

Gawande argued that while health and medicine advances are of course positive, one consequence is that we have “medicalized our mortality” to the point where even terminally ill patients and their families look to their doctors for life-saving answers.

“Well, I didn’t [have the answers],” Gawande said.

Gawande said that medicine’s typical approach is to trade time and quality of life in the short term for longer life in the future, but the trade-off isn’t always a good one. For example, aggressive cancer treatment can be debilitating and painful, and often fails to prolong life, merely making the end of life miserable for patients.

In contrast, the goal of palliative care is to create the best possible day for patients today, regardless of what it means for the future. Studies show that for terminally ill patients palliative care improves quality of life, including people’s sense of control and empowerment over their lives. While these positive attitudes may be expected, palliative care practices reduce unwanted medical procedures (as well as costs) and have been shown to actually increase life span – by 25 percent in one study of late-stage lung cancer patients.

“If palliative doctors were a drug, the FDA would approve them,” Gawande told the audience.

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Emergency Medicine, Medicine and Society, Patient Care, Public Safety, Stanford News

A young child, a falling cabinet, and a Life Flight rescue

A young child, a falling cabinet, and a Life Flight rescue

ticktockLife in the air rescue business is highly unpredictable. You can spend many hours idling away the time in an obscure, basement office. But when an emergency call comes, you literally don’t have a second to grab a pen on the way out the door.

So it was on one November day, when I did a ride-along with Stanford’s illustrious Life Flight air ambulance service, the oldest in California. The team graciously agreed to let me accompany them on a flight for a story for Stanford Medicine magazine, whose current issue is focused on the role of time in medicine. Life Flight, I figured, would give me a sense of the split-second timing that can sometimes make a difference between life and death in an emergency situation. I was scheduled to fly with the crew in late October, but instead I spent that day learning about the service in what proved to be a leisurely day with no calls.

On my second ride-along day, it appeared that history was about to repeat itself when, just as my shift was about to end, the emergency call came in at 3:39 p.m. I became an eye witness to the rescue of a toddler who suffered a serious head injury when a heavy, ill-secured cabinet at her preschool crashed down on her head during naptime. The story was so dramatic that it made the local news. The school was shut down several days later by local officials because of code violations.

Things could have gone poorly for little Aeshna, the 3-year-old victim of the accident, who was left dazed, not fully conscious and vomiting as a result of her injury – clear signs of head trauma. She could have suffered significant bleeding in the brain and permanent brain damage – a prospect that was a major concern for her parents and caregivers.

The two Life Flight nurses, who have a breathtaking array of skills, and their veteran U.S. Navy pilot made it to the scene at the Fremont, Ca. preschool across the bay within 23 minutes of the call and were able to bring Aeshna back to Stanford for quick assessment and treatment.

You can read the minute-by-minute scenario of Aeshna’s rescue in the the magazine, which came out last week.

Previously: Stanford Medicine magazine reports on time’s intersection with health, Comparing the cost-effectiveness of helicopter transport and ambulances for trauma victims, Stanford Life Flight celebrates 30 years and Ask Stanford Med: Answers to your questions about wildnerness medicine
Illustration by Lincoln Agnew

Behavioral Science, In the News, Patient Care, Research, Sleep, Stanford News

Watson, the narcoleptic Chihuahua, demonstrates symptoms on-air

Watson, the narcoleptic Chihuahua, demonstrates symptoms on-air

Watson - 560

What’s black and white (with just a few splotches of brown), understands French, and falls asleep at feeding times? A narcoleptic Chihuahua named Watson.

Watson’s becoming accustomed to the spotlight — he made his debut here at Scope, then went on to star in a KQED blog post. But today, Watson made it on air for The California Report. The segment begins – endearingly — with Emmanuel Mignot, MD, PhD, cooing to Watson in French. Mignot is Watson’s human and a sleep researcher known for the discovery of the gene that causes narcolepsy in dogs. (He also directs the Stanford Center for Sleep Sciences and Medicine).

Although Watson isn’t officially a Stanford dog — he’s Mignot’s pet — Mignot is hoping to use the slightly shy pup to help some of his patients, particularly children, who suffer from narcolepsy.

One of the symptoms of narcolepsy is cataplexy, a sudden loss of muscle control and Watson often suffers these attacks when he’s excited or spots tasty food.

“He looks at you with these eye half-closed and its almost like he’s just telling you, “Oh, I love you,” but in fact its because he’s having a sleep attack,” Mignot said.

Previously: Narcoleptic Chihuahua joins Stanford sleep researcher’s family, Stumbling upon circadian rhythms and Does influenza trigger narcolepsy?
Photo by Emmanuel Mignot

Medicine and Literature, Patient Care, Podcasts, Stanford News

Abraham Verghese: “A saintliness in so many of my patients”

Abraham Verghese: "A saintliness in so many of my patients"

Verghese lookingThere’s a quiet dignity that envelopes Abraham Verghese, MD. You can imagine other authors whose books have scaled to the top to be taken with themselves, hardly humble, but that’s not the case here. When you get to know him, you realize he’s a man of great depth, with a wonderful soul and a deeply felt sense of humanity. When he talks about treating patients it’s with reverence (“There’s a saintliness I saw in so many of my patients,” he told me) – as if each time he crosses the threshold into a patient’s room he’s entering hallowed ground.

Verghese has written two searing works of nonfiction: My Own Country, a paean to the young men he treated for HIV-AIDS when it was just emerging as a human scourge, and The Tennis Partner, a loving eulogy to a best buddy whose life went off the rails. Then the blockbuster novel Cutting for Stone: atop the New York Times best seller list for two years and selling more than one million copies. It’s a sweeping tale of how time transforms family – jolting the reader from the first page, where a Roman Catholic nun gives birth to twins boys and dies on the operating table. I read it during the height of the global economic chaos in 2009 and was transported each evening, thankfully, to another world outside of monetary meltdowns and fiscal maelstrom.

In this 1:2:1 podcast, Verghese and I talk about time’s impact on medicine, novels and life. (Time is the theme of the current issue of Stanford Medicine magazine.) About life, he tells me, “There’s a poignancy to living because we won’t live forever… As John Irving says in one of his books, ‘Life is a terminal condition. It’s about to run out on all of us…’ There’s no exception to that. And I think, in a way, that’s what makes life so beautiful.”

This podcast is accompanied by a Q&A with Verghese in the magazine.

Previously: Stanford Medicine magazine reports on time’s intersection with health, Abraham Verghese discusses stealing metaphors and the language of medicine at TEDMED, Stanford’s Abraham Verghese honored as both author and healer, Abraham Verghese’s Cutting for Stone: Two years as a New York Times best seller and Abraham Verghese at Work: A New York Times profile
Photo by Jason Henry

Cardiovascular Medicine, Patient Care

One person’s normal = another person’s heart attack?

One person's normal = another person's heart attack?

Much has been written about calculating your BMI (or body mass index, the relationship between your height to your weight) and what it might indicate about your health.

Similarly, the glucose level in your bloodstream and what it says about your risk of diabetes.

What you don’t hear much about, and what I learned yesterday, is how much the meaning of those numbers can vary between people. A healthy BMI for one person might put another person at risk for heart disease.

I was visiting the Stanford South Asian Translational Heart Initiative run by Rajesh Dash, MD, PhD, along with some Biodesign fellows I’ve been following (more about that in a later post). By way of background on the clinic, Dash explained the high risk of heart disease in the South Asian population. (My colleague Becky Bach blogged about that risk last year.)

Dash said one challenge in helping South Asians avoid heart disease comes from the definitions of “overwieight” and “diabetic”. Dash said that South Asians tend to have more fat per body weight, and so might have an acceptable BMI but still have an amount of fat that puts them at risk for heart disease. Similarly, a South Asian person who is pre-diabetic might benefit from diabetes medication.

“We see a lot of glucose levels that are technically normal but still troubling,” he told me. “Their risk of a cardiovascular event is almost as high as for someone who has diabetes.”

For a population that has four times more heart attacks in California than other ethnic groups, it seemed especially troubling that a mere definition might be preventing them from getting appropriate care.

That got me wondering how those numbers apply to other populations. Or to me.

I had my yearly blood work done recently and was pleased to see that everything was “normal”. I’m curious if in a decade people like Dash and others might have collected enough data to sway the way our values get reported. A set of numbers that is normal for my gender and ethnicity might trigger additional screening in another person, or be considered better than normal for someone else.

Previously: A ssathi (partner) to thwart heart disease in South Asians and Biodesign program welcomes last class from India

Cancer, Patient Care

Bone marrow transplantation: The ultimate exercise in matchmaking

Bone marrow transplantation: The ultimate exercise in matchmaking

candy heart - smallStanford Blood Center is home to one of the top human leukocyte antigen (HLA) histocompatibility laboratories in the country. While the center is best known for supplying blood products to hospitals, SBC’s HLA lab supports the success of hundreds of bone marrow transplants administered at Stanford Health Care by providing and developing tests to determine donor and recipient organ compatibility.

What Is Bone Marrow?

Bone marrow is in the center of the bone and contains hematopoietic stem cells (HSC). These cells are immature cells that can grow into red blood cells, white blood cells or platelets, which serve the following purposes in the body:

  • Red blood cells carry oxygen throughout the body
  • White blood cells help fight infections
  • Platelets help control bleeding

When bone marrow is damaged or destroyed, it can no longer make normal blood cells and a stem cell transplant (bone marrow transplant) is required.

Bone Marrow Transplantation

A bone marrow transplant is the process of replacing unhealthy HSC with healthy ones in order to restart hematopoiesis, the process of generating red blood cells, white blood cells, and platelets.

Patients requiring a bone marrow transplant are often being treated for one of the following:

Patients requiring a bone marrow transplant are often being treated for one of the following:

  • Blood cancers like leukemia
  • Diseases which result in bone marrow failure like aplastic anemia
  • Other immune system diseases

In some cases, the patient will receive an autologous transplant where the stem cells come from the patient’s own blood or bone marrow, which would need to have been drawn and stored prior to the patient becoming ill.

When a patient receives stem cells from another person, it’s called an allogeneic transplant. When conducting an allogeneic transplant, it’s of the utmost importance that the donor and patient’s immune systems are closely matched; otherwise the patient will either reject the healthy donor HSC or the donor cells can attack the patient. The latter scenario is called graft-versus-host disease, and can be fatal in some cases.

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Medical Education, Patient Care, Stanford News

Stanford student earns national recognition for research on medical communication

Stanford student earns national recognition for research on medical communication

scope photo winning poster

Stanford medical student Genna Braverman, a member of the 2013 entering class, recently won “best poster” at the national meeting of the Society of Teachers of Family Medicine. The poster visually represented a qualitative analysis of nearly 800 written student reflections collected over the past seven years, describing communication challenges the students encountered when learning how to practice family medicine.

When I talked recently with Braverman about her work, she emphasized that it can be quite a challenge to convey qualitative work in a visually compelling, streamlined manner. But the subject matter is something she’s always been interested in – interpersonal dynamics, the doctor-patient relationship, and communication issues were on her mind before medical school, and her interest intensified after she took courses in bioethics at Stanford.

Braverman enjoys a close relationship with her adviser, Erika Schillinger, MD, who she called an “amazing, inspiring mentor.” Her interest was piqued after listening to Schillinger speak, and confirmed when they met and she learned of all their overlapping interests. Schillinger mentioned a large dataset of student reflections she was interested in analyzing, and Braverman thought the project sounded like just what she was hoping to spend her summer and fall working on.

About the findings, she told me, “In the written reflections, students overwhelmingly wrote about communication challenges that related to working with patients and their families, and the main themes we found were challenges in exchanging verbal information, navigating emotionally charged situations, and negotiating the terms of the encounter.”

The poster represents only a portion of the entire research project’s findings. In addition to these written responses, there was data collected afterwards from focus groups, in which the researchers found an interesting divergence. “Many, many more students discussed challenges communicating with other members of the healthcare team (particularly with their attending physicians) in the context of an evaluative environment,” Braverman said.

So what do these results suggest should be done? Currently, communication curricula focus on the content and process of the medical interview, while psychodynamic factors – including those aspects of the encounter that are emotionally charged or conflicting – receive less time and energy. Schillinger is very interested in curricular reform early in medical school, and this research suggests that the sizable communications curriculum in the first two years should be reevaluated. Particular areas of interest might be agenda setting, use of interpreters, and time management

In her career, Braverman hopes to combine patient care, teaching, and research, and so she’s pursuing academic medicine. She told me: “I find the variety of work appealing… I want a chance to work with patients directly but also to help advance the field. Teaching is very important to me.”

In addition to her adviser, she said her teachers Sylvia Bereknyei, DrPH, and Janine Bruce, MD, were instrumental in pushing her to earn this recognition.

Photo courtesy of Genna Braverman

CDC, Chronic Disease, Events, In the News, Patient Care, Research

Stanford expert to discuss systemic exertion intolerance disease (formerly chronic fatigue syndrome) during public call

Stanford expert to discuss systemic exertion intolerance disease (formerly chronic fatigue syndrome) during public call

telephone-158190_640Chronic fatigue syndrome is not only real, but it also has a new name: “systemic exertion intolerance disease” (SEID). The weeks-old name change was heralded by an Institute of Medicine report, which was reviewed by Stanford’s José Montoya, MD.

Montoya will discuss the disease, the name change, and some of Stanford’s work on SEID, in a “patient-centered” conference call sponsored by the CDC on Monday afternoon. He’ll be joined by the CDC’s Elizabeth Unger, PhD, MD, chief of the chronic viral diseases branch.

The public is welcome to join in, and listeners will be able to submit questions during the conference call, which begins at noon Pacific time.

More details, including the call-in number, can be found on the CDC’s website.

Previously: Chronic fatigue syndrome gets more respect (and a new name), Some headway on chronic fatigue syndrome: Brain abnormalities pinpointed, Unbroken: A chronic fatigue syndrome patient’s long road to recovery and Patients’ reaction to ME/CFS coverage in Stanford Medicine magazine
Photo by OpenClips

otolaryngology, Patient Care, Pediatrics, Stanford News

Hearing clearly helped Down syndrome toddler develop on track

Hearing clearly helped Down syndrome toddler develop on track

joshua-copen-mom-stanford-childrens

For children who are deaf or have hearing disabilities, cochlear implants can make it possible to hear sounds. Unlike hearing aids, which simply amplify sounds, cochlear implants stimulate the auditory nerve directly. If young children get the implant and the intense follow-up therapy, they are able to “develop language skills at a rate comparable to children with normal hearing, and many succeed in mainstream classrooms,” according to the National Institutes of Health.

But for children with other developmental disabilities, that training and therapy follow-up can be even more challenging, so many doctors don’t advocate for implants for them. That was the experience of Joshua Copen, who has Down syndrome, and his mother, Iara Peng. Notably, children with Down syndrome are more likely than the rest of the population to have hearing problems.

Peng’s efforts to get Joshua a cochlear implant ran into frustrating roadblocks until she met Kay Chang, MD, a pediatric otolaryngologist and otologic surgeon at Lucile Packard Children’s Hospital Stanford. Chang described the challenges of cochlear implants for children like Joshua in a post on Packard’s Healthier, Happier Lives Blog:

“Traditionally, developmentally delayed patients haven’t been seen as ideal candidates for cochlear implants,” said Chang, associate professor of otolaryngology – Head and Neck Surgery at the Stanford University School of Medicine. “The electrical stimuli delivered by the implants have no resemblance to regular hearing. The brain has to adapt itself to learn the electrical patterns. Someone who is developmentally delayed isn’t going to progress as fast as a child who is developing normally. However, just because it’s a lot tougher to rehabilitate a child with developmental delay doesn’t mean they won’t benefit from it.”

For Joshua, an added stumbling block was getting his family’s insurance providers to cover the surgery and follow-up classes. But that issue was resolved, and now, at five years old, Joshua has had no problems with his learning comprehension.

Evidence is mounting that although more challenging to implement, cochlear implants for children like Joshua are worth the effort. John Oghalai, MD, head of the Children’s Hearing Center at Packard, is conducting a study looking into how cochlear implants help developmentally delayed children. The blog post also highlights a 2012 study by Oghalai:

Oghalai found that the use of cochlear implants in deaf children with developmental delay can help them from falling further behind their peers and shouldn’t be so easily dismissed. And the earlier the child gets the implants – 12 months is the minimum age allowed by the FDA – the better.

Previously: Cochlear implants could help developmentally delayed infants, says Stanford/Packard study and Baby steps: Therapy that helps the deaf to hear

Aging, Health Policy, Patient Care, Stanford News

A call to “improve quality and honor individual preferences at the end of life”

A call to "improve quality and honor individual preferences at the end of life"

ICU IllustrationThis week’s New England Journal of Medicine featured a perspective piece co-authored by Philip Pizzo, MD, former dean of Stanford’s School of Medicine, and David M. Walker discussing recommendations for how U.S. physicians can approach the issue of end-of-life care. Pizzo and Walker co-chaired an Institute of Medicine (IOM) committee on the issue that culminated in a report that we wrote about last September.

In a recent survey, most physician respondents said they “would forgo high-intensity end-of-life treatment” for themselves. Yet many patients in their care are subjected to aggressive treatments that prolong the dying process unnecessarily. The editorial outlines the challenges that we face as a nation regarding end-of-life care and notes that the aging population of the country will soon make end-of-life care a critical issue. The authors recommend, among other things, adding end-of-life care to physician training, incorporating end-of-life conversations into patient care, even before they become terminally ill, and incorporating end-of-life decisions into health care delivery and payment programs.

In an email, Pizzo discussed why fixing our end-of-life care predicament is so important, telling me:

Unfortunately, all too frequently, individual preferences are not honored at the end of life – with many individuals experiencing more invasive interventions than they wished at the end of their life. It is important that we value the quality of life throughout the life journey, including at the end of life. As a nation, our current health-care system fails in end of life care – which has an enormous impact on individuals, their families and loved ones, and our community and nation.

The situation is complicated by politics. In 2009, end-of-life care became a hot-button issue when critics of the Affordable Care Act claimed that a provision to reimburse physicians for advising patients on living wills or advance directives would lead to “death panels.” Pizzo said of the debate:

Having conversations with our families and physicians about the end of life that allow us to express our personal preferences should not be seen as controversial… Sadly, what has made this issue controversial is egregious political rhetoric. The suggestion that health-care reform would result in “death panels” was wrong and highly destructive, frightening many Americans unnecessarily. When such hyperbole and soundbites become the story they have highly negative consequences. That is why the IOM committee underscored the importance of a more accurate and fact based public discussion about end of life care that made it clear that our intentions, as a society, must be to improve quality and honor individual preferences at the end of life.

Previously: No one wants to talk about dying, but we all need to, Study: Doctors would choose less aggressive end-of-life care for themselves, Former School of Medicine dean named to expert panel to reform end-of-life care in America, Communicating with terminally ill patients: A physician’s perspective and On a mission to transform end-of-life care
Image, “A portrait of death in modern America,” by Neils Olson

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