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Cardiovascular Medicine, Medical Education, Patient Care, Stanford Medicine Unplugged

Pathology vs. patients: Balancing morbid fascination with heart-felt care

Pathology vs. patients: Balancing morbid fascination with heart-felt care

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.

3690107655_eef7c24702_zI recently saw a patient who, against all odds, survived an aortic dissection. Miraculously, he was alive after the wall of his aorta — the largest and most important vessel in the body — began to rip apart. Aortic dissections are so violent and agonizing that a large portion of these patients don’t survive. Yet somehow, my patient was still able to sit upright in his chair and recount his story to me just a day after his surgery, a testimony to how far medicine has advanced and to how lucky he was.

I admit that I was more fascinated by his cardiovascular travails than I was concerned by his suffering and the long road of recovery awaiting him. After all, it was only a few months prior that we learned the pathophysiology of aortic dissections. And now in front of me was a real life case study accompanied by authentic lab values, imaging, and physical exam findings, all of which were free for me to probe.

Had I encountered him prior to medical school, I would have spent more time to express words of support and sympathy — he’s a survivor and he needed any and all means of encouragement to return to some semblance of normalcy.

Once we have reached the end of the journey, the patient himself is buried underneath our medical knowledge and the disease has seized all our attention.

But medical school, for better or worse, changes your perception of patients and their plights. Despite all the efforts in the curriculum to teach us to view the patient as a whole, the endless nights and sacrificed weekends of burying ourselves in textbooks and scrambled jargon eventually dehumanizes patients and forces the spotlight on the pathology.

Call it insensitivity or callousness, but this morbid fascination with human illness is one of the paradoxes in medicine — that we must sympathize with the patient as well as with the disease that is harming him and may eventually kill him.

And for better or worse, becoming a competent doctor requires some modicum of this perverse curiosity, a veritable double-edged sword. Anyone who lacks it would simply not be able to survive four years of college dedicated mostly to studying basic biology, another four years of medical school to studying clinical presentations, and then finally another handful of years to specialize, all the while taking on hundreds of thousands of dollars in debt and sacrificing young adulthood. Yet, insidiously, once we have reached the end of the journey, the patient himself is buried underneath our medical knowledge and the disease has seized all our attention.

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Palliative Care, Patient Care, Research, Science, Stanford News

Desire for quality end-of-life care crosses ethnic groups

Desire for quality end-of-life care crosses ethnic groups

VJ in officeEthnic minorities want quality end-of-life care, including in-depth conversations with their physicians about how to achieve this, but they often face barriers to getting the care they desire. That’s according to a study published today in the Journal of Palliative Care.

In a press release I wrote about the study, lead author VJ Periyakoil, MD, a Stanford expert in end-of-life care, explained why she decided it was important to conduct a study with the goal of reaching out to traditionally hard-to-reach ethnic groups within the communities where they live:

There is so much generalization and stereotyping by physicians about how ethnic minorities want everything done, irrespective of how effective these treatments might be at the end of life. I decided that we needed to go into their communities and ask them what they want.

Periyakoil and her colleagues conducted a series of in-person interviews at a scattering of community-based senior centers around the San Francisco Bay Area accompanied by interpreters. The populations are particularly hard to reach because of a number of issues, including language barriers, immigration status, and poverty levels, Periyakoil said. In addition to English, interviews were conducted in Spanish and five Asian languages — Burmese, Hindi, Mandarin, Tagalog and Vietnamese. As I described in the release:

The researchers… found that all participants valued high-quality end-of-life care. A majority, 61 percent, said there were barriers to receiving high-quality care for members of their ethnic group.

The 191 participants who reported barriers to getting quality end-of-life care were asked to describe the biggest barriers, which were, in order of how often they were cited: finances and health insurance; physician behavior; communication problems with doctors; family beliefs; health system barriers; and cultural/religious barriers.

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Behavioral Science, Mental Health, Patient Care

Take it from me: To improve compliance with psychiatric meds, we must educate patients

Take it from me: To improve compliance with psychiatric meds, we must educate patients

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 mental health advocate Gabe Howard.

3926259585_5f265f6683_zWhenever I give a speech to psychiatric practitioners, I start by giving the group index cards and pens and asking them to write down their most important goal for their patients.

Answers like “be med-compliant,” “miss fewer appointments,” and “follow my instructions” are always the most popular. Patients’ answers are much different. They write “live well,” “go to Hawaii,” or “get back to work.” This exercise serves as a reminder to physicians that taking medication is not a final goal, but a step toward the ultimate goal of living well.

It’s important to realize that patients aren’t failing to take their medication as prescribed because they are incompetent, lazy, or intentionally self-sabotaging. Patients often skip doses or skew directions because they are scared of something, often due to a misunderstanding.

They may misunderstand the prescription instructions or the way the drugs work and this misinformation quickly becomes fact in a patient’s mind. They may already be confused by their diagnosis and lack knowledge about their condition.

Once I understood how difficult it was to find the correct combination of medications, I felt much more hopeful.

More often than not, patients suffer from side effects or even a perceived moral failure by taking psychiatric medications. I’m surprised that many clinicians aren’t aware of the stigma patients feel about taking medication. They believe it means they are “less of a man,” “not capable of being a good mother,” or other such nonsense. Psychiatric medications are often first prescribed to people in their early 20s who are not used to taking medication. Most 20-somethings are still in the “I’m invincible” phase.

I believe this can be remedied with education.

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Big data, Medical Apps, Patient Care, Precision health, Research, Stanford News, Technology

Precision health in practice: Using HealthKit to monitor patients’ blood-sugar levels

Precision health in practice: Using HealthKit to monitor patients' blood-sugar levels

Rajiv Kumar and patient - 560

Imagine having to keep track of your diabetic son’s constantly changing blood sugar levels by typing each individual reading into an email. Then, once in the doctor’s office, having to spend a chunk of your precious time with your clinician waiting for her to download that data.

That was the plight of Lori Atkins, whose son has Type 1 diabetes, until this March, when the Atkins joined a pilot project involving Apple’s HealthKit. Pediatric endocrinologist Rajiv Kumar, MD, is using HealthKit – a new technology that can securely share health data with third-party applications – to more easily monitor the blood-sugar levels of 10 patients.

A recent Inside Stanford Medicine article describes the project:

Patients like Blake wear a continuous glucose monitor that sends 288 blood-sugar readings a day to an Apple mobile device through Bluetooth. The data is securely transmitted via HealthKit into the patient’s electronic medical record at Stanford Children’s Health through the MyChart app.

The system also improves clinical outcomes, Kumar said: “Our endocrinologists are now able to easily assess large volumes of blood-sugar data between clinic visits — and quickly identify trends that could benefit from insulin dosing regimen changes.”

Kumar is planning to expand the use of the app to more of his patients.

Previously: A look at the MyHeart Counts app and the potential of mobile technologies to improve human health, Harnessing mobile health technologies to transform human health and A picture is worth a thousand words: Researchers use photos to see how Type 1 diabetes affects kids
Photo by Norbert von der Groeben

Ethics, In the News, Parenting, Patient Care, Pediatrics, Stanford News

Parents now help doctors decide what care is right for the sickest babies

Parents now help doctors decide what care is right for the sickest babies

Today, NPR’s Morning Edition featured an in-depth story on the evolution of decision-making in neonatal intensive care units – hospital nurseries for the sickest infants. Parents now have much more say in their babies’ care than in the past, and Stanford experts who were on the front lines of the change, including William Benitz, MD, chief of neonatology at Lucile Packard Children’s Hospital Stanford, explained how it happened.

As medical care for premature and other at-risk babies advanced in the 1970s and early 1980s, doctors gained the ability to save many infants who would once have died soon after birth. But some children in the new category of survivors had lifelong disabilities, with lasting implications for them and their families.

At first, doctors did not realize that this change would affect parents’ desire to participate in planning medical decisions for fragile infants:

“It never occurred to anyone that that might be a reasonable conversation to have,” Benitz says. “We were in unexplored territory.”

As technology improved and doctors tried to save sicker babies, and some born even earlier in gestation, there were new decisions to make: Should the health team put the tiny child on a ventilator? Attempt heart surgery? Those interventions helped many infants survive. Others did not fare as well.

“A lot of them ended up with significant impairments,” Benitz recalls. And doctors started to get pushback. “In the mid-80s we began to hear from families that maybe that wasn’t consistent with their goals for their children.”

As a result, neonatologists began having in-depth conversations with parents about the possible outcomes of different treatments for their infants. The practice is now widespread, and it means a lot to parents like Karin and Chris Belluomini, whose daughter, Joy, was born in May 2015 with Down syndrome, several heart defects and fluid around her lungs.

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Chronic Disease, Patient Care, Pediatrics, Stanford News

Helping kids with chronic medical conditions make the jump to adult care

Helping kids with chronic medical conditions make the jump to adult care

With just one dramatic example from her practice, Stanford pediatric critical care specialist Yana Vaks, MD, recently illustrated for me the importance of better adult health care for children who survive a catastrophic childhood illness or endure an incurable medical diagnosis.

“There was an 18-year-old who came to the hospital in crisis,” she said. “He had a liver transplant when he was 8, but when he turned 18 he wanted to start a new life and decided he was done with all that extra health consciousness his transplant meant.” The patient had stopped taking the drugs necessary to keep his body from rejecting the transplant and neglected to see his doctor regularly. By the time Vaks saw him, his transplanted liver had begun to fail, starting a catastrophic process that affects all body systems. “It was a shocking case,” she said. The teenager died the next day.

His mother told Vaks that the biggest challenge had been the 18th birthday, that legal coming of age where parents can no longer control what medications their children take.

As I did the reporting for a Stanford Medicine story called “When I Grow Up,” I was shocked to learn just how many young adults fall into the categories of survivor or chronically ill: They may soon represent 10 percent of the U.S. population ages 15 to 25. Before advances in treatment began saving so many lives, that population was just 1 percent.

The specialists who treat these growing children have long recognized the challenges related to this patient population: Young adults may be grown in body, but they aren’t always ready psychologically or socially to take full responsibility for consistently following complicated medical routines and practicing lifestyle restrictions. Nor are most adult care doctors trained in the after-effects of childhood cancer, for instance, or the lifelong need to monitor adults with childhood heart repairs.

What’s needed is something called transition care — but no one had studied just what that should look like. The Clinical Excellence Research Center, established in 2010 to study, design and demonstrate ways to improve health care while reducing costs, identified transition care as a good candidate for the changes it hopes to effect with its work. For two years, CERC gathered information, reviewed research, interviewed patients and families and visited hospitals around the country, and it has launched pilot programs – including one at Stanford Children’s Health – to test its recommendations:

The CERC team’s recommendations emphasize that pediatricians and pediatric specialty teams must be guides in this process: equipping patients and parents with information so they can anticipate the transition, coaching patients to develop the confidence and skills needed to manage their health, and locating and being available to specialists and primary care physicians who will need certain medical knowledge to care for their patients as adults.

Previously: Stanford Medicine magazine tells why a healthy childhood mattersStudy highlights childhood cancer survivors’ increased risk of future health problemsQuestioning whether physicians are equipped to care for childhood cancer survivors and Chronic illness in childhood: One patient’s story
Illustration by Daniel Horowitz

Big data, Patient Care, Stanford News, Technology

OrderRex taps decisions of thousands of “doctors like me”

OrderRex taps decisions of thousands of "doctors like me"

chen_vaAs a new clinician, Stanford’s Jonathan Chen, MD, PhD, struggled to treat patients with unfamiliar conditions. He yearned to ask one or, even better, dozens of more experienced physicians for advice.

For most people, that would be a passing wish. But not for Chen, who has a PhD in computer science and experience working as a software developer. (Oh yeah, he also started college when he was 13).

A recent article from the Center for Health Policy and Center for Primary Care and Outcomes Research (CHP/PCOR) describes Chen’s next steps:

“I thought about how the Amazon product-recommender algorithm works and thought, `Can we do this for medical decision-making?’” said the 34-year-old Chen, a VA Medical Informatics Fellow at Stanford Health Policy.

So instead of, other people who bought this book also liked this book, how about: Other doctors who ordered this CT scan also ordered this medication.

“What if there was that kind of algorithm available to me at the point of care?” he asked. “It doesn’t tell me the right or wrong answer, but I bet this would be really informative and help me make better decisions for my patients.”

Chen’s idea differs from the Green Button concept, which draws on thousands of medical records to search for patients with similar conditions. Instead, Chen is trying to capture doctor’s decision-making process by developing a digital platform to mine electronic medical records; he calls his project OrderRex.

It “looks for ‘doctors like me,’ and anticipates what the doctor wants before they ask for it,” Chen explains in the article.

Chen received a five-year National Institutes of Health grant and is working to develop OrderRex with the guidance of his mentor, bioinformatician Russ Altman, MD, PhD.

Previously: Push-button personalized treatment guidance for patients not covered by clinical-trial results, Big Data in Biomedicine panelists: Genomics’ future is bright, thanks to data-science tools and Euan Ashley discusses harnessing big data to drive innovation for a healthier world 
Photo by Joseph Matthews/VA Palo Alto

Medical Education, Patient Care, Stanford Medicine Unplugged

When medicine isn’t enough: Establishing a therapeutic relationship

When medicine isn’t enough: Establishing a therapeutic relationship

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

4375292195_40cb7547d7_zI spent the last two months on my internal medicine rotation. Medicine is an interesting clerkship because we see medically complex cases, but also because we get to spend a lot of time with our patients. Patients can be in the hospital for days or weeks, and we have sustained exposure to them on a daily basis.

I developed good relationships with many of my patients, but one in particular stood out. I’ll call him Bill. Bill was sort of a stereotypical big, blue-collar, somewhat intimidating guy, but he ended up being easy to talk to. He came in to the hospital complaining of shortness of breath. His diagnosis was easy – he was having a congestive heart failure (CHF) exacerbation.

Heart failure is a term that encompasses many different conditions, but the fundamental problem is the heart is not beating properly. Without an adequate heartbeat, blood does not circulate well throughout the body. As a result, fluids can get backed up, leak out of the vasculature and pool in the lungs. The fluid buildup caused Bill to feel short of breath.

Bill presented with an uncomplicated CHF exacerbation, so we diuresed him (meaning we gave him medications that caused him to pee out the excess fluid). He no longer had any issues breathing after that so we sent him home.

After his discharge, I continued to see other patients without thinking about Bill. He was an open and shut case from a medicine perspective. But a few days later, my team got a call from the ED. Bill was back with another exacerbation.

CHF is a chronic condition with no cure, but can be well managed with medications and a low-sodium diet. Bill was not consistently taking his medications, nor did he follow his diet.

Admittedly, this wasn’t entirely his fault. He lived in a shelter where the diet was whatever was provided, and he mentioned that it was difficult to keep track of his medications. But he was still making choices that negatively affected his health. For example, he had just eaten an entire party-sized bag of pretzels. As you might imagine, party-sized pretzel bags don’t fit into a low-sodium diet. I wanted to understand why he ate them, and hopefully get him to stop.

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Mental Health, Patient Care, Research

A detailed look at delirium, from the inside

A detailed look at delirium, from the inside

16070214393_8b9ce40d42_zFrom the outside it looks scary enough: A patient so ill their connection to reality has frayed.

Now, a paper in the American Journal of Critical Care provides an inside look at the experiences of patients in intensive care who have suffered delirium, which is characterized by altered consciousness and disorganized thoughts. The work confirms that delirium is frightening, disorienting and can lead to long-lasting anxiety and post-traumatic stress disorder.

Delirium is a common symptom of the severe brain dysfunction caused by many serious disorders that send patients to the ICU. A team of Canadian researchers interviewed 10 patients who had suffered from the condition, distilling four main themes that characterize the experience:

  • Memory loss — Some patients reported feeling anxiety and shame because they couldn’t recall what had occurred during some portions of their illness, the authors wrote.
  • Disconnection – Patients said they were frustrated and fearful when they were unable to communicate with family members and caregivers. One patient said, “It felt like I was living in a bubble; I couldn’t move my arms or legs. And, ah, people all around me but no one answering me… I would be calling out to people but no one would even look up.”
  • Processing – Both during and after the delirium, patients struggled to distinguish events that were real from hallucinations or other thoughts. Some of their hallucinations included, “frozen turkeys in a kitchen, car lights on the wall, large black birds, savage monkeys in the lights, fairies and a lady picking flowers.” Patients also often did not know if they were asleep or awake.
  • Fear — Nearly all patients experienced the sense that they or their family members were in danger. These feelings were so strong several patients developed habits to try to prevent a reoccurrence, such as avoiding surgery or sleeping pills.

“Delirium puts additional emotional and physical stress on a patient whose health is already compromised and our findings demonstrate how potentially psychologically harmful ICU delirium can be,” said lead author Karen Whitehorne, RN, a nurse therapist at Eastern Health in Newfoundland, Canada in a release. These findings add to existing knowledge about the condition and “can facilitate development of treatment plans,” she and her colleagues conclude in the paper.

Photo by Dean Hochman

Patient Care, Stanford News, Videos

A new tool to treat atrial fibrillation

A new tool to treat atrial fibrillation

The first time Susan Klein’s heart stopped, and then started again, she was very frightened. But she didn’t run for the phone to call a doctor. Klein had a pretty good idea of what had happened: Six other women in her immediately family had experienced heart palpitations, or, what they called “the little mouse running around their chest,” Klein said. “I had a history — and it was to be expected in my family.”

Klein’s palpitations, however, became so frequent and debilitating that, even with medication, she didn’t have enough breath to make it across a street. By then, of course, she knew that her diagnosis was officially atrial fibrillation, an irregular heartbeat most often called afib. More than two million people in the United States and an estimated 30 million worldwide suffer from what is the most common type of heart rhythm disorder. Before I interviewed Klein this year for a Stanford Health Care video, I was naïve about the seriousness of afib and the challenge of treating it with any certainty of full recovery.

Afib symptoms can include shortness of breath, weakness, fatigue, heart palpitations, light-headedness, and chest or abdominal pain. Some patients with afib feel no symptoms – making it more difficult to diagnose the disease early enough to prevent its most serious consequences: an increased risk of heart failure and a five-times-more-likely incidence of stroke. Afib accounts for about 15 percent of strokes in the United States.

Afib in some people can be managed with medications. Those didn’t work for Klein. Ablation, the standard interventional procedure, often had to be done more than once or even several times. That wasn’t good enough for Klein. “To spend six to seven hours under general anesthetic with only a 40 percent success rate? I wasn’t satisfied,” she said.  Then she heard about Sanjiv Narayan, MD, PhD, a Stanford doctor with a very particular specialty: cardiac electrophysiology. Narayan, who now directs Stanford’s atrial fibrillation program and its electrophysiology research, had long been interested in detecting the points of electrical chaos in the heart that cause afib.

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