Published by
Stanford Medicine

Category

Patient Care

Medical Education, Patient Care, SMS Unplugged

The first time I cried in a patient’s room

The first time I cried in a patient’s room

SMS (“Stanford Medical School”) Unplugged was recently launched as a forum for students to chronicle their experiences in medical school. The student-penned entries appear on Scope once a week; the entire blog series can be found in the SMS Unplugged category.

Moises bedside sketchThis blog entry marks my last contribution to SMS Unplugged. I am two months from graduating from Stanford Medical School and starting my adventures as an intern. My fiancé and I happily matched at Baylor for our residencies and look forward to contributing to patient care in Houston. Having finished my clinical duties and finding myself spending less time in the hospital, I didn’t anticipate the powerful experience I would have at a patient’s bedside this past week.

In my clerkships I have encountered various situations in patient care that are difficult to deal with: the weight of sharing a negative prognosis, the death of a patient, disappointments in personal performance. Through these encounters I took pride in remaining professional and controlling my emotions, finding a balance between showing empathy and connecting with my patients but not allowing my personal feelings to take over. More specifically, I have never cried in front of a patient. This changed last week, and it happened in the most unexpected of moments.

As a teaching assistant for the second-year class my responsibilities include recruiting patients for students to interview and examine. For the most part, it’s a tedious thing to do and can be a task to dread. But every now and then I meet a patient that reminds me how amazing patient – and human – contact can be. During my last recruitment session, I met a patient that made me cry. I cried not for her, but because she cried for me.

In the process of introducing myself I could tell that she was a warm and caring person. This made it easier to open up to her when she asked about me, where I was heading next, and what life plans my fiancé and I have. It’s not usually a conversation I would have with a patient that I’ve only known for two minutes, but something about her genuine interest was welcoming. Wrapping up our conversation, I began to thank her and make my exit when she reached for my hand and asked if I could give her just two more minutes. Instead of continuing with generic conversation, she closed her eyes and began to pray while holding my hand tight.

Praying with a patient wasn’t new; several patients in the past have asked for me to share moments of prayer with them, and they were beautiful moments. But this time it was about me. She prayed that I have a good residency experience and that I emerge from my training well prepared. Then she opened her eyes and revealed the tears that she would bless me with. She asked that I never forget the dynamic that I will share with my patients. She asked that I always remember to look my patients in the eye, check my position of power and recognize the intelligence of my patients, and more than anything “kick the heck out of life.”

Continue Reading »

Behavioral Science, Cardiovascular Medicine, Patient Care, Research, Stanford News

A little help from pharmacists helps a-fib patients adhere to prescriptions

A little help from pharmacists helps a-fib patients adhere to prescriptions

TurakhiaIt’s not always easy to take drugs as prescribed — life often gets in the way of taking a pill at the same time each day. And it’s relatively easy to ignore the tiny printing on a medication container, to rationalize why that doesn’t apply to you, or how a few exceptions certainly wouldn’t hurt.

Except sometimes precise prescription adherence is important. And that’s the case for a new class of blood thinners such as dabigatran that are used to treat atrial fibrillation.

With these twice-daily oral drugs, “even missing a few doses can lead to acute events such as stroke,” said Mintu Turakhia, MD. Along with other researchers, Turakhia was puzzled when he learned that patients weren’t adhering very well to these drugs. It seemed surprising because the drugs didn’t require frequent blood tests like warfarin, the traditional blood thinner used to treat atrial fibrillation.

Digging into the data, Turakhia and his team found that adherence varied by treatment site, not by individual patient. How odd, they thought. To figure out what was going on, “we rolled up our sleeves and looked at what each site was doing,” Turakhia said.

My colleague explained the result of the researchers’ work, which appears today in the Journal of the American Medical Association, in a release:

At the sites with the highest patient adherence, there was usually a pharmacist actively educating patients on medication adherence, reviewing any possible drug interactions, and following up to make sure patients were taking the medication when they were supposed to and that prescriptions were being refilled on time…

“We’re suggesting that greater structured management of these patients, beyond the doctor just prescribing medications for them, is a good idea,” Turakhia said. “Extra support, like that provided in the VA anticoagulation clinics with supportive pharmacist care, greatly improves medication adherence.”

Previously: One label fits all? A universal schedule for prescription drugs, Raising awareness about the importance of taking medications properly and Study highlights increased risk of death among patients with atrial fibrillation who take digoxin
Photo of Turakhia by Norbert von der Groeben

Cardiovascular Medicine, Chronic Disease, Patient Care, Women's Health

Welcome to your new country: A heart patient on her “travels” with heart disease

Welcome to your new country: A heart patient on her "travels" with heart disease

11138791064_8e2989e3ee_z

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 heart patient Carolyn Thomas

My doctor once compared my uneasy adjustment to life as a heart patient with being like a stressful move to a foreign country.

I used to be pretty comfortable living in my old country, pre-heart attack. I had a wonderful family and close friends, a public relations career I loved, a nice home – and a busy, happy, healthy, regular life.

Then on May 6, 2008, I was hospitalized with what doctors call a “widowmaker” heart attack.

And that was the day I moved far, far away to a different country.

Many who are freshly diagnosed with a chronic and progressive illness feel like this. The late Jessie Gruman, PhD, who spent decades as a patient, described in a Be a Prepared Patient Forum column that sense of being drop-kicked into a foreign country: “I don’t know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map, and I desperately want to find my way home.”

Deported to the foreign country called Heart Disease, I too found that nothing around me felt familiar or normal anymore once I was home from hospital.

I felt exhausted and anxious at the same time, convinced by ongoing chest pain, shortness of breath and crushing fatigue that a second heart attack was imminent. I felt a cold, low-grade terror on a daily basis.

Instead of feeling happy and grateful because I had survived what many do not, I frightened myself by weeping openly over nothing in particular. I slept in my clothes. I didn’t care how I looked or how I smelled. I had no interest in reading, walking, talking, showering or even getting out of bed. Everything seemed like just way too much trouble.

Where once I had been competent, I now felt unsure.

Where once I had made decisions with sure-footed speed, I now seemed incapable of deciding anything.

And my worried family and friends couldn’t even begin to comprehend what was going on for me – because I could scarcely understand it myself. Sensing their distress, I tried to paste on my bravest smiley face around them so we could all pretend that everything was normal again. But making even minimal conversation felt so exhausting that it eventually seemed so much easier to just avoid others entirely.

Continue Reading »

Addiction, Events, Pain, Patient Care, Public Health, Stanford News

The problem of prescription opioids: “An extraordinarily timely topic”

The problem of prescription opioids: "An extraordinarily timely topic"

photo (2) 2Suffer from pain? Or become an addict? Bemoan the epidemic of pain? Or decry the epidemic of opioid addiction?

At first glance, pain and addiction appear to conflict, to occupy distinct never-overlapping planes. But in reality, pain and addiction anchor two ends of a spectrum, with a lot of gray area in between, said Anna Lembke, MD, director of the Stanford Addiction Medicine Program.

Lembke and Sean Mackey, MD, PhD, chief of pain medicine, squared off in a good-natured debate of sorts moderated by chief communications officer Paul Costello last week at a Stanford Health Policy Forum on “The Problem of Prescription Opioids.”

“This is an extraordinarily timely topic,” Dean Lloyd Minor, MD, said in his introduction. “These issues really reflect a dilemma of wanting to bring the best compassionate care and science to our patients, yet also needing to respect the adverse effects that can occur.”

The statistics on both sides are sobering. The two experts told the audience that in the U.S., more than 16,000 people per year die of opioid overdose and 100 million people live in pain.

And both Lembke and Mackey shared harrowing tales of the suffering of their patients. Lembke once was called to consult on a women suffering from low back pain who had a opioid addiction identified by two previous psychiatrists. Yet in the exam room, the patient threatened to sue if she didn’t receive an opioid prescription, Lembke said. Cases like that prompted her to pen a provocative 2012 essay titled “Why doctors prescribe opioids to known opioid abusers.”

But Mackey treats patients who are suffering deeply, including a woman whose foot injury from a vehicle accident morphed into a pain syndrome affecting her upper extremities.

The current opioid addiction problem stems from a historical pattern of failing to treat pain, even in dying patients, Lembke said. Yet the pendulum swung too far and now doctors feel obligated to prescribe drugs such as opioids, she said.

At the Stanford Pain Management Center, teams of specialists work together to treat pain as a complex condition that affects many parts of the body and mind, Mackey said. Patients are treated with physical therapy, psychiatry and a variety of other specialties to try to allow them to participate in meaningful life activities, he said.

Although care at Stanford is top notch, it is an outlier and thousands of other patients are exposed to poor pain management practices. In addition, pain is now widely recognized as a disease, but addiction remains stigmatized, Lembke said.

When doctors recognize a opioid-seeking patient, they should treat the addiction, not boot the patient out of their practice.

Lembke and Mackey stressed that education about both pain and addiction ought to receive increased attention in medical schools. And patients need to take a role in treating both their own pain, and their addictions, they said. They do share common ground, Lembke said.

“All we think about every day is how we’re going to do it better,” Mackey said.

Previously: Assessing the opioid overdose epidemic, Stanford addiction expert: It’s often a “subtle journey” from prescription-drug use to abuse, Is a push to treat chronic pain pressuring doctors to prescribe opioids to addicts?, Why doctors prescribe opioids to patients they know are abusing them and Study shows prescribing higher doses of pain meds may increase risk of overdose
Photo by Becky Bach

Events, Medicine X, Patient Care, Stanford News, Technology, Videos

Medicine X conference to focus on the theme of “Great eXpectations”

Medicine X conference to focus on the theme of "Great eXpectations"

Known for its powerful patient stories and candid on-stage conversations, the Medicine X conference returns to campus on Sept. 25-27. This year’s program will focus on the theme “Great eXpectations” and explore five key areas, including the challenges associated with accessing health care as you age, the misconceptions and misperceptions faced by patients and population health from the patient perspective.

In a press release about the upcoming conference, Lloyd Minor, MD, dean of the School of Medicine, noted, “The brightest minds and the most innovative thinking converge at Stanford Medicine X — the intersection of medicine and technology… This is one of the most thought-provoking and important events in health care today and will help pave the way for how technology enables patient-centered and patient-driven care in the years to come.”

During the three-day event, Peter Bach, MD, director of the Center for Health Policy and Outcomes at Memorial Sloan Kettering Cancer Center, will deliver a keynote address. Bach is a physician and health-policy expert whose research focuses on the cost and value of anti-cancer drugs. An accomplished writer, he has authored numerous op-eds on health care, but is perhaps most well-known for his New York Magazine essay “The Day I Started Lying to Ruth” about losing his wife to cancer. Other confirmed speakers include cellist and composer Zoë Keating; Robert Pearl, MD, executive director and CEO of The Permanente Medical Group; and 91-year-old IDEO designer Barbara Beskind.

Registration for Medicine X is now open. More details about the program can be found on the Medicine X website.

More news about the conference is available in the Medicine X category.

Previously: Registration now open for the inaugural Stanford Medicine X|ED conference, Stanford Medicine X: From an “annual meeting to a global movement” and A doctor recounts his wife’s battle with cancer: “My knowledge was too clear-eyed”

Events, Genetics, Patient Care, Pediatrics, Research, Stanford News, Stem Cells

“It’s not just science fiction anymore”: Childx speakers talk stem cell and gene therapy

“It’s not just science fiction anymore": Childx speakers talk stem cell and gene therapy

childx PorteusAt the Childx conference last week there was a great deal of optimism that stem cell and genetic therapies are about to have a huge impact on many childhood disease. “It’s not just science fiction anymore,” Matthew Porteus, MD, PhD, told the audience. “We can correct mutations that cause childhood disease.”

The session was hosted by Stanford professor Maria Grazia Roncarolo, MD, who until recently was head of the Italy’s Telethon Institute for Cell and Gene Therapy at the San Raffaele Scientific Institute in Milan. Roncarolo pointed out that there are more than 10,000 human diseases that are caused by a single gene defect. “Stem cell and gene therapies can be used to treat cancer and other diseases,” Roncarolo said.

Two such diseases are sickle cell disease and severe combined immune deficiency. In both cases, a single nucleotide change in DNA becomes a deadly defect for children with the bad luck to have them. Porteus is working on very new genome editing technologies that allow clinicians to go in and fix those DNA typos and cure diseases.

Stanford dermatology researcher Anthony Oro, MD, PhD is working to do something similar with skin cells for a painful blistering disease called epidermolysis bullosa. Children with EB lack a functional gene for one of the proteins that anchors the layers of skin together. Oro and Stanford Institute for Stem Cell Biology and Regenerative Medicine scientist Marius Wernig, MD, PhD, are taking defective skin cells from patients, transforming them into embryonic-like stem cells, fixing the gene defect, and then growing them back into skin stem cells and then layers of skin ready for transplantation. Oro says that they have shown that they can do this in a scalable way in mice, and they hope to start a clinical trial in humans soon.

One of the challenges to genetic therapy is that it often requires putting the gene into blood stem cells to deliver it to the body, but the high dose chemotherapy or radiation that is necessary to remove the bodies own blood stem cells and make way for the transplanted cells is very dangerous in itself. Researchers like Stanford researcher Hiromitsu Nakuchi, MD, PhD, are exploring gentler ways to make space in the body for the transplanted cells. He has discovered that simply by feeding mice a diet deficient in a particular amino acid, blood stem cells begin to die. Other cells in the body don’t seem to be as strongly affected. A dietary solution may eventually allow clinicians to avoid using the highly toxic treatments that have traditionally been used for blood stem cell transplant.

Continue Reading »

Patient Care, Research, Stanford News

Patients who have a good emotional fit with their doctors are more likely to follow their advice

Patients who have a good emotional fit with their doctors are more likely to follow their advice

15633607804_fb1e60c03c_zGetting patients to trust – and take – their doctor’s advice isn’t always easy. In the United States alone, an estimated 40 percent of patients in certain disease groups struggle to follow their doctor’s recommendations.

A recent Stanford News story highlighted the importance of feeling emotionally aligned with your doctor. Patients are more likely to listen to, and approve of, doctors that convey the emotions and states they’d like to have.

In the study (subscription required, pdf here), psychologist Jeanne Tsai, PhD, and postdoctoral fellow Tamara Sims, PhD, recruited 101 adults from the San Francisco Bay Area to answer a series of questions about their health and emotional state.

Each participant received recommendations, such as “do muscle strengthening” or “rest,” from a virtual physician that focused on either “high arousal” or “low arousal positive states.” Participants that received advice from the “high arousal” virtual doctor were told to do activities that would increase their energy levels, while participants that got advice from the “low arousal” doctor were advised to take steps to help them relax.

For the next five days, participants reported how well they adhered to their virtual doctor’s advice, how calm or energized they felt, and how relaxed or energetic they wanted to feel. At the end of the five-day period, each participant ranked their virtual doctor’s competence, knowledge, and trustworthiness.

The researchers found that participants who wanted to feel more energized were more likely to prefer and listen to the advice of the high-energy doctor. Participants who wanted to feel more relaxed were more likely to favor and adhere to advice from the low-energy doctor.

As Tsai explains in the story, the importance of this study is that doctors may be able to encourage their patients to trust and take their advice more often if they make it a priority to identify their patient’s health goals first and then tailor their treatments accordingly.

Previously: Study explores how cultural differences can shape the way we respond to sufferingA call for extended bedside-manner trainingAbraham Verghese discusses reconnecting to the patient at the bedside and Hands on: Abraham Verghese teaches bedside skills
Photo by www.audio-luci-store.it

Ebola, Events, Genetics, Global Health, Patient Care, Pediatrics, Stanford News

Global health and precision medicine: Highlights from day two of Stanford’s Childx conference

Global health and precision medicine: Highlights from day two of Stanford's Childx conference

Childx Shah“I do think it’s possible to end preventable child death.” Those were the powerful words spoken by Rajiv Shah, MD, the former administrator of USAID, during his keynote address at the start of the second day of Stanford’s recent Childx conference. More than 6 million children die each year before age 5, mostly of easily preventible diseases, Shah told the audience.

Shah went on to describe some of the more daunting health and humanitarian crises he faced during his 5-year tenure at the helm of United States Agency for International Development, including the recent Ebola outbreak in West Africa, and the Somali famine that he helped to address with the U.S. government’s Feed the Future program. Speaking about visiting a severely overcrowded Somali refugee camp, he said, “If you looked closely, you saw signs of hope and innovation.” For instance, children were receiving the pentavalent vaccine that protects against five serious childhood diseases and that was, until quite recently, considered too expensive to distribute in this type of setting.

Shah also described how a rapid redesign of protective gear for health-care workers fighting Ebola was essential to helping get the highly contagious illness under control: The old gear was much too hot and cumbersome, as well as being difficult to remove safely, and may have been a factor in the high rates of infection among health care workers early in the Ebola outbreak. Several partners, including NASA, the Department of Defense, Kimberly-Clark and Motorola, worked together to make new protective equipment that was easier to use and better suited to intense heat.

Our capacity to innovate is essential for solving global health problems, Shah concluded. “…Saving children’s lives in resource-poor settings is not just… great and morally important,” he said. “It actually creates more stability in communities.” Families have fewer children and invest more in the education of those kids, including the girls, and the surrounding society begins to look more stable and prosperous, he said. Innovation and technology in the arena of child health are important “not just for health purposes but for shaping the kind of world that keeps us safe, secure and prosperous over many decades.”

Continue Reading »

Chronic Disease, Clinical Trials, Genetics, Patient Care, Pediatrics, Stanford News

Cystic fibrosis patient on her 20+ years of care

Cystic fibrosis patient on her 20+ years of care

lauren-catron-dr-conrad-stanford-childrens560

When Lauren Catron was first diagnosed with a severe form cystic fibrosis, an inherited disease that makes mucous and sweat glands go haywire, her doctors were unsure that she’d live to be a teenager. That was nearly 23 years ago. Now, 26-year-old Catron is a full-time college student at Mission College in Santa Clara, Calif. with enough energy to work a job in her spare time.

Catron credits her sustained health to the more than two decades of care she’s received at the Pulmonary and Cystic Fibrosis Center at Lucile Packard Children’s Hospital. Catron shares her story on the Happier, Healthier Lives Blog:

“When I was first diagnosed in 1992, the doctors told my parents that I may not make it to my teens,” said Catron, who has the genotype associated with a shorter lifespan and the most severe symptoms of cystic fibrosis, including a constant buildup of mucus in her lungs that interferes with breathing. “But a whole team of people at Stanford has dedicated themselves to keeping me healthy. They have given me absolute unconditional support, amazing treatment and care, and have become my second family.”

Carol Conrad, MD, director of the pediatric pulmonary function lab, explains that the center’s expert care stems from the many clinical trials and studies they do to advance the treatment of cystic fibrosis. “No other CF center in California is doing these kinds of clinical trials,” Conrad said.

This research, which ranges from dietary-supplement studies by Conrad to gene therapy work done by Richard Moss, MD, shows promise. Moss and his colleagues were the first to discover that gene therapy could improve pulmonary function in cystic fibrosis patients – an important finding that may lead to a treatment for the disease in the future. “As depressing as the disease can be, there’s a lot of hope. That’s what keeps us motivated,” said Conrad.

Previously: New Stanford-developed sweat test may aid in development of cystic fibrosis treatmentsFilm about twin sisters’ double lung transplants and battle against cystic fibrosis available onlineDiverse microbes discovered in healthy lungs shed new light on cystic fibrosis and Living – and thriving – with cystic fibrosis
Photo of Conrad (left) and Catron courtesy of Lucile Packard Children’s Hospital

Cancer, In the News, Patient Care, Research, Women's Health

Breast cancer survivors shown to benefit from quality-of-life interventions

Breast cancer survivors shown to benefit from quality-of-life interventions

6223587547_f7418ef489_zHow do you bounce back after breast cancer? As outlined in a recent Dartmouth press release, a quarter to a third of breast-cancer survivors have trouble re-adjusting to life and “peak performance” once their health is stabilized. But new research shows that rehabilitation interventions can have a significant positive effect for these women.

The release goes on to say:

Almost one-third of breast cancer survivors experience difficulty after treatment when trying to resume previous levels of work, leisure, physical, and social activities. This is particularly true of women in young to middle adulthood. For them, cancer diagnosis comes at a time of high demands for peak performance at work and home, and correspondingly less flexibility in time and schedule.

The Dartmouth group’s rehabilitation intervention was designed to help women find ways to accelerate recovery and engage in health-promoting activities. The study considered feasibility, acceptability to survivors, and efficacy in helping women to meet their goals.

Women were highly satisfied with the telephone-delivered intervention and primarily used the program to set weekly goals regarding exercise, work, better nutrition, taking care of themselves and their homes, managing stress, and social activities. The women met 71% of their weekly goals and showed improvements in quality of life, active coping, planning, and reframing.

Studies on the intervention, published in the Journal of Psychosocial Oncology and in Occupation, Participation, and Health, were led by Kathleen D. Lyons, ScD, professor of psychiatry at Dartmouth’s Geisel School of Medicine and affiliated with its Norris Cotton Cancer Center, which funded the research. In total 48 women were enrolled, and the results were clear enough to warrant further research into similar recovery interventions that don’t focus on pain-management.

“It was a complete pleasure and privilege to work with the study participants and give them a structure and some support while they found ways to create healthy and productive routines and lifestyles,” Lyons says in the release.

Previously: Breast cancer patients are getting more bilateral mastectomies – but not any survival benefit, Red Sunshine: One doctor’s journey to surviving stage 3 breast cancer, Wellness after cancer: Stanford opens clinic to address survivors’ needs and A call for rehab services for cancer survivors
Photo by DixieBelleCupcakeCafe

Stanford Medicine Resources: