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Events, Global Health, Haiti, Medicine and Literature, Patient Care, Stanford News

Physician writers share a “global perspective on healing”

Physician writers share a "global perspective on healing"

6319607736_156bcef31e_zWhen I saw that an event called “Medicine Around the World: Healing from a Global Perspective” was taking place on campus, I thought it would be right up my alley as a medical anthropologist.

The event, sponsored by Stanford’s Medicine and the Muse program and the Pegasus Physician Writers group, was a reading in which physicians shared some beautiful pieces they had written about their experiences providing medical services across the globe, including Haiti, Mexico, Austria, and Vietnam. The musings were less about culture than they were about poverty, conflict, disasters, and war, and what it’s like to seek health and healing in such overwhelming circumstances.

All five physicians’ writings brought to life a difficult scene. Julia Huemer, MD, a child and adolescent psychiatrist, wrote an aching piece about interviewing a young Somalian refugee in an Austrian winter just before Christmas. She conveys the utter incapacity of her survey to capture his experience, and an uneasy awareness that he is the one doing her a favor, indulging her intrusion. Here is a teenager too childlike to carry the weight of adulthood, yet who carries it with more grounded grace than many adults. Her holiday, once marked by stressful emptiness, is not transformed in any heartwarming sense, but at least becomes more heavy, more real.

Ali Tahvildari, MD, a radiologist, composed a “Ghazal for Global Health,” a poetic form used to convey love, loss, and longing, in this case pleading for the privileged to care about foreign suffering. Mali Mann, MD, a psychiatrist, chronicled her experience being one of “los medicos volodores” who fly to Mexico, where she works with orphaned children suffering severe emotional traumas. Henry Ward Trueblood, MD, a trauma surgeon, read an excerpt from his forthcoming book about being a surgeon in Vietnam during the war, where he worked in a tragically understaffed civilian hospital. The extreme environment pushed him to test the limits of his surgical competence, which both challenged him to grow and taught him to respect his own limits when he was way out of his league.

The piece that brought in the most “culture” in a classic anthropological sense was that of William Meffert, MD, a cardiovascular surgeon who read a fictional account of being trapped in a collapsed building in Haiti while on a medical mission after the earthquake. In it, he grappled with how religion – a Haitian mix of voodoo and Catholicism – played a vital role in the life of his assistant. As an atheist, the protagonist vacillated between being baffled, annoyed, and comforted in a way he couldn’t quite grasp; in a way that circled between dream and reality, the supernatural was a means toward healing.

Previously: Stanford doctor-author bring historic figure Jonas Salk to life, Stanford med student chronicles his experiences working in rural Kenya, Surgeon-author: “My intent is to let people know that the person next door could be intersex”, “Write what you know”: Anesthesiologist-author Rick Novak discusses his debut novel, For a group of Stanford doctors, writing helps them “make sense” of their experiences, and Exploring global health through historical literature
Photo by Hanna Sorensson

Chronic Disease, Patient Care, Pediatrics

On growing up with chronic illness: “I’ve never felt like I had ownership over my body”

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 a patient with Crohn’s disease.

woman-body-144220_1280

As a child who was diagnosed with Crohn’s disease at the age of nine, I learned to give my power over to my doctors and parents. I never questioned the constant prodding, the pain that I had to endure from different tests and exams, the dozen pills that I swallowed down each day, because after all, I was to trust doctors and adults. They knew what was best for me. They knew what was best for my body. And of course, this is true – but only to an extent. Please hear me out.

In no way am I undermining the miraculous work that medical professionals do each and every day. I am beyond grateful for the way that my disease was handled, I was given a fairly normal childhood because of the way my medical team was able to manage my disease. And on top of that, I have the most incredible parents who handled my disease beautifully; they allowed me to feel supported, loved and taken care of. Honestly, I just had to show up for doctor appointments, swallow pills, and be a kid. I left the details up to the adults.

But then I started growing up. High school, boys, and school dances became my new normal. I lost my power at the age of 17 when I was date raped. Although I attempted to say “no” and stick up for myself, I ultimately didn’t know how to confidently do this. I didn’t know how to command respect because I was so used to never being asked to say “yes.” Unfortunately, this situation snowballed into another date rape and ultimately a suicide attempt. I truly felt detached from my body. It wasn’t mine. I didn’t know how to handle it. I despised it. It was the source of so much pain. And so, I wanted to leave it.

I never connected my inability to stick up for myself with being a child of chronic disease until the last couple of years. As I reflect back, the correlation is so clear. I never was taught to question what my doctors did to my body. I cannot recall being asked if it was “okay” to be examined or to be touched. If I was in a doctor’s office, it was just assumed and expected. To be clear: There was absolutely never anything inappropriate that happened to me in my doctors’ care. I think the only reason that the perceived lack of power on my side affected me is because I was a child, and I didn’t have the capability to differentiate the way I handled my body in the care of a doctor versus the hands of a teenage boy.

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Behavioral Science, Men's Health, Patient Care, Public Health, Stanford News

How can we get men to take better care of themselves?

How can we get men to take better care of themselves?

7206160814_dca6203a04_zFirst, I tried asking. Sprinkling little reminders, jokingly throughout the day. Then I started lecturing. Now, more than a month into my get-my-husband-to-the-dentist campaign, I’ve moved on to heckling, grilling, guilt-tripping and bargaining. I’m not too proud to beg.

I’ll bet my efforts sound familiar to men’s health expert Donnovan Somera Yisrael, MA. He’s a wellness educator at Stanford’s Vaden Health Center and he manages sexual and emotional health programs, often focusing on preventing or curbing risky behavior. And not going to the dentist, when you have an obvious tooth problem, counts as risky in my book.

Yisrael recently sat down for a Q&A with BeWell@Stanford to discuss his work with men. And his first sentence solidly supports my case: “I believe that the phenomenon of men neglecting their health generally as compared with women has been solidly established.” Uh, huh! And he has a few ideas about why that is:

Over the years, as I’ve dug deeper into “why people do risky things,” it has become evident that culture (broadly defined) is a huge factor in these risky behaviors, and in turn gender roles/stereotypes play powerful roles in the culture that influences our behavior.  Whether we are talking about wearing sunscreen, body image/eating disorders, alcohol/drug abuse or sexual/relationship violence, gender “rules” play a major role.

I’m up against a tough foe and eager for tips. The BeWell interviewer read my mind by asking how we can encourage the men in our lives to take better care of themselves. Yisrael’s response:

Men need to be persuaded and educated that in order to best maintain health, they must find a healthy way of asking for help. They must pursue health maintenance and self-care without concern that doing so means they are weak or not “real men.”

We must work to challenge what it means to be a guy, boy, man, father, etc. in 2015 and beyond. This issue is dealt with so brilliantly in the film The Mask You Live In by Jennifer Siebel Newsom. I recommend it to everyone.

And, in the case of the dentist, I’ll keep cajoling and perhaps add a bit of gender messaging to my arsenal: Manly men visit the dentist regularly.

Previously: To live longer, men need to embrace their femininity, new research suggests, Sex matters: Why we shouldn’t conduct basic research without taking it into account and Examining how fathers’ postpartum depression affects toddlers 
Image by Christoph Weigel via Marcel Douwe Dekker

 

Health Policy, Mental Health, Patient Care, Pediatrics, Stanford News

Stanford expert on new treatment guidelines for teens’ eating disorders

Stanford expert on new treatment guidelines for teens' eating disorders

eatingdisorder-plateEating disorders often begin in the teenage years, but, surprisingly, the medical community long lacked a teen-specific set of guidelines for treating these serious illnesses.

That changed in May with the publication of a set of practice parameters co-authored by Stanford eating disorder expert James Lock, MD, PhD, who also directs the Comprehensive Eating Disorders Program at Lucile Packard Children’s Hospital Stanford. The parameters were based on an extensive review of the current scientific evidence around eating-disorder treatment, including recent studies by Lock and his colleagues that show that teens’ parents can play an active role in helping their children recover from anorexia nervosa. That’s a big shift from traditional thinking about eating disorders, which held that young patients’ families should be shut out of treatment.

In a new Q&A, I talked with Lock about why the parameters were needed. He told me:

There have never been practice parameters that address eating disorders in children and adolescents, and expertise in treating these disorders has been sort of sequestered. Yet eating disorders are so prevalent and are such a severe problem: Lifetime prevalence in adolescent girls is around 1 percent, and the disorders have among the highest fatality rates of all mental illnesses.

Teens need treatment approaches that account for their level of physical and emotional development, the fact that their parents generally want and need to be involved in their recovery, and the fact that they have not usually had eating disorders for as long as adult patients with the same diagnoses.

Lock also discusses how he hopes the new guidelines will improve training of psychiatrists, how recent changes to eating disorder diagnostic criteria are making it easier for doctors to get their patients the help they need, and why outpatient treatment is the new front line for young people with eating disorders.

Previously: Patient tells how social media helped her overcome the “shame” of her eating disorder, Incorporating family into helping teens overcome eating disorders and Story highlights need to change the way we view and diagnose eating disorders in men
Photo by Darren Tunnicliff

History, Patient Care, Stanford News, Transplants

A look back at one of Stanford’s first kidney donors

A look back at one of Stanford's first kidney donors

Inga GoodnightMuch of medical science writing involves reporting on the next potentially lifesaving treatment. But sometimes it’s rewarding to look back. The recent death of one of Stanford’s first kidney donors had me doing just that – and exploring a time when this now-common procedure was cutting edge.

Inga Goodnight, who died at the age of 99 in April, donated her kidney to her son Gary, who went on to live another 37 years.

As I wrote in a just-published article on their story:

Today, kidney transplants are established procedures; more than 17,000 were performed in the United States last year. Improvements in surgery and immunosuppressive drugs have increased the number of potential kidney matches. Studies have shown that donors have no increased health risks compared with the general public.

But in 1965, when Gary became the third patient to receive a kidney transplant at Stanford, many things were unknown. Doctors were still determining proper dosages for the immunosuppressive drugs, and they didn’t know if Gary’s body would reject the kidney or if he would even survive the first year.

While it was known that a person could live with one kidney, no one knew if there would be long-term health impacts for Inga. And unlike modern laparoscopic surgery, with its tiny incisions and short hospital stays, the surgery to remove the Inga’s kidney involved a large incision that cut through abdominal muscles and required a long recovery.

While these advancements in medicine were interesting, I found my conversation with Bill Goodnight (Inga’s son and Gary’s brother) about his memories from this time equally informative. In many ways their attitudes towards Gary’s condition and treatment seemed quite modern.

Gary Goodnight was aware that his kidneys weren’t going to last and actively followed the news about the emerging field of transplants. Both Bill and his mother had themselves tested to see which might make a good match. And, similar to today’s patients and families with life threatening conditions, the Goodnight family approached the procedure with hope.

Kim Smuga-Otto is a student in UC Santa Cruz’s science communication program and a writing intern in the medical school’s Office of Communication and Public Affairs.

Previously: Double kidney transplants leave Hawaii siblings raring to goKidney-transplant recipients party without drugs – immune suppressing anti-rejection drugs, that is and Well blog: Minnesota man denied insurance for donating kidney
Photo courtesy of Bill Goodnight

Events, Medicine and Literature, Medicine and Society, Patient Care, Sexual Health

Surgeon-author: “My intent is to let people know that the person next door could be intersex”

Surgeon-author: "My intent is to let people know that the person next door could be intersex"

None of the Above“How many of you know what intersex is?” surgeon and author Ilene Wong, MD, (who did her residency at Stanford and writes under the pen name I.W. Gregorio) asked an audience of medical students, doctors and community members at a recent panel discussion on the topic on Stanford’s campus.

Since we’d gathered at the event, which was sponsored by Stanford’s Medicine & the Muse Program and Pegasus Physician Writers, to listen to a book reading and discussion about intersex — a term that describes sex characteristics that are neither all female nor all male — you might think we were all well-informed about the topic. We were not, and our fidgety response to Gregorio’s opening question hinted at the problem we came to discuss: a widespread lack of knowledge in the medical, and general, community about intersex individuals.

As Gregorio and her fellow panelists, Jeanne Nollman, founder of the AIS-DSD Support Group, and Hillary Copp, MD, a pediatric urologist at the University of California, San Francisco, delved into the discussion topic – “Has the medical community failed the intersex community?” – we gained a better understanding of what it means to be intersex, why so little is known about it and what can be done to remedy this.

“I met my first intersex patient when I was pregnant with my first child,” Gregorio told us. “It made me think of what it means to be a woman and how your chromosomes determine so much.” At the time, medical students received little training on intersex, Gregorio said. “There’s still a huge gap in medical education on what intersex is. Too often intersex is distilled down to one line on the chalkboard or one question on an exam.”

Her experience inspired Gregorio to write None of the Above, a young adult book about an 18-year old girl who learns she is intersex. “Books help us think about and talk about difficult issues,” she explained. “My intent is to let people know that the person next door could be intersex.”

Intersex is more common than you may think, occurring in approximately one in every 2000 individuals. This means that a person is more likely to be intersex than they are to have cystic fibrosis – yet most people have heard of the latter condition.

So, why isn’t intersex more well known? Nollman and Copp offered some possible explanations. “Many people think [it’s] a dirty thing because it has the word ‘sex’ in it,” said Nollman. “They think it’s something shameful they can’t talk about.”

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Cancer, Patient Care, Research, Stanford News

From petri dish to patient: Studying, treating – and trying to cure – less common cancers

From petri dish to patient: Studying, treating - and trying to cure - less common cancers

surviving melonomaIn 2015, more than 1.5 million Americans were diagnosed with cancer. Around forty percent of those new diagnoses were in three types of cancer — breast, lung, and prostate —  so it’s no surprise that those are the ones you hear about most often. But hundreds of thousands of new cancer patients each year are diagnosed with less common cancers, some affecting only a handful of patients a year. These are the diseases you don’t often hear about.

Before a few months ago, I have to admit that I didn’t know anything about cutaneous T cell lymphoma (CTCL). Each year, just a few thousand adults in the U.S. are diagnosed with the cancer, which often starts as an itchy, scaly rash — not the first thing that comes to mind when you think of classic cancer symptoms. Most people first learn about CTCL when they, or someone close to them, is diagnosed. I, on the other hand, started investigating it because I was writing about Stanford’s Cutaneous Lymphoma Group, which is spearheading research and new treatments of the disease.

At the same time, I was researching metastatic melanoma, the most advanced form of the skin cancer. While melanoma of any variety is relatively common (almost 75,000 new cases a year in the U.S.), only four percent of new diagnoses are the most severe, metastatic type. To understand both CTCL and metastatic melanoma, I spoke to patients being treated at Stanford clinics, doctors who specialize in the diseases, and researchers who study the cancers at the most basic molecular and genetic levels.

Science writers and scientists alike often justify research on rare diseases by explaining how we can learn about more common conditions through studying less common ones. But hearing about melanoma and CTCL — and how findings in the lab quickly trickle up to change clinical practice and save patients’ lives — it became ever clearer to me that research on these rarer cancers has an immeasurable impact all on its own. The clinicians I talked to were all avid proponents of integrating the latest research into their practices as soon as they could, and constantly tweaking their protocols to find the best ways to help patients. And each patient was able to get a new lease on life thanks to clinical trials and scientist-doctors willing to try new things.

To learn more about CTCL and metastatic melanoma, check out my features in the latest issue of Stanford Medicine magazine: “The rarest of rashes,” and “Surviving melanoma.”

Sarah C.P. Williams is an award-winning science writer covering biology, chemistry, translational research, medicine, ecology, technology and anything else that catches her eye.

Previously: This summer’s Stanford Medicine magazine shows some skinGene-sequencing rare tumors – and what it means for cancer research and treatmentA rare cancer survivor’s journey to thriving and advocatingHumble anti-fungal pill appears to have a noble side-effect: treating skin cancer and Raising awareness about rare diseases
Illustration by Matthew Bandsuch

Emergency Medicine, Ethics, Global Health, Medicine and Society, Patient Care

After Haiyan: Stanford med student makes film about post-typhoon Philippines

After Haiyan: Stanford med student makes film about post-typhoon Philippines

Multi-talented Stanford Medicine student Michael Nedelman has been featured on Scope before for his filmmaking and storytelling abilities. His new film, “After Haiyan: Health narratives in the aftermath of the typhoon,” is a series of vignettes about the November 2013 disaster in the Philippines. The film, which will be released soon, connects socioeconomic and structural issues of access to health in times of crisis.

It was filmed primarily in Tacloban, Leyte, in July and August of 2014, and Nedelman made a follow-up visit in November and December to premiere and promote the project. Despite his busy end-of-school-year schedule, Nedelman answered some questions for me about his work in a recent email exchange.

What was it like filming in the wake of a tragedy? 

Phil Delrosario said it best. He’s the cinematographer and editor I met here at Stanford. Knowing when to turn on the camera was a “huge balancing act” between our drive to document the truth, and our obligation to be compassionate storytellers. We couldn’t ignore the emotional weight of Typhoon Haiyan, and we couldn’t ignore the fact that we weren’t part of the communities we were documenting. So we sought out people who not only wanted to share their stories with us, but who could also provide some insight as to how they wanted those stories to be seen… For one of the videos, Deaf advocates like Noemi Pamintuan-Jara reached out to us first, not the other way around… That was really special for us, to be able to work alongside a community that has been promoting Deaf accessibility and culture long before we ever arrived on the scene. And we had these new partners who could give meaningful feedback on our filmmaking decisions.

Filming in the wake of a tragedy doesn’t mean everything is tragic. The shadow of Haiyan is still there, but there’s also a sense of living in the moment and moving forward. All over the city, you’ll see posters and graffiti that say, “Tindog Tacloban!” (“Rise Tacloban!”) That’s something that really resonated with our team and the ethos of our project. You can’t tell the full story of Tacloban without optimism and resilience.

How does this film link storytelling and health, and what is special about that for you?

When I was first discussing the project with one of the producers, Roxanne Paredes, we asked ourselves a similar question: How would our project add to or nuance the coverage of the typhoon? Right after the storm, Haiyan was all over the news. Tacloban was in survival mode. But months later, after many of those cameras had left, there was a different set of long-term challenges and a focus on recovery. Those were the issues we wanted to explore, which tend to be less covered by the media but still have profound implications for community health and future disaster preparedness. In short, just because the cameras stopped rolling doesn’t mean there weren’t more stories to tell. That really broadened the way in which I think of health stories.

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Cancer, Medical Education, Medicine and Society, Patient Care

Cancer Ninja fights patient misinformation, one cartoon at a time

Screen Shot 2015-06-15 at 1.16.14 PMThere seems to be a trend towards using cartoons for health education: In just the past few months, we’ve posted on children’s books, depression blogs, global-health videos, and art-based clinical skills, all using non-realist art to convey information and qualitative experience. A new blog by Andrew Howard, MD, radiation oncologist at the University of Chicago and the University of Illinois at Chicago, fits right in with this innovative bunch. His blog, Cancer Ninja, aims to use cartoons to convey both how cancer works and what it’s like to be diagnosed and treated for it. Howard started it just one month ago, so his project was fresh from the creative oven when I spoke with him on the phone last week.

What motivated you to start Cancer Ninja?

I’d been frustrated for a while with how little my patients know about cancer. They come in with all these confusions; they don’t understand the difference between chemotherapy and radiation (and from a doctor’s perspective, there’s a huge difference). They don’t understand our rationale for choosing one treatment or another or a combination. One patient was convinced that hot sauce caused cancer and was really upset that she had gotten cancer because she had gone out of her way to avoid hot sauce all of her life. I realized there is a lot of misinformation out there, and that was the purpose for starting this blog.

My wife and I have two little girls, and in the evenings sometimes they say, ‘Draw dinosaurs with me, Daddy!’ So I started drawing with them, and I enjoyed it so much that I would sometimes stay up at night after they had gone to bed, still working on my dinosaur. My wife saw me enjoying that a lot, and thought maybe I could combine this with educating people about cancer.

Your website is targeted to be generally informative about cancer; why did you start with breast cancer? 

Breast cancer is really common in this country, unfortunately, and it’s also very well studied, so we understand a lot about it, which makes it a nice model. There’s a pretty clear algorithm for the proper way to treat a patient with such and such stage breast cancer, so it makes it easy to follow along.

How many characters or episodes are you hoping to do? So far, there’s just “Jane.” 

Screen Shot 2015-06-16 at 1.36.59 PMI’m kind of experimenting. I envision that I’m going to follow Jane though her diagnosis and treatment, but my wife told me that Jane can’t die; she really likes Jane. But 40 percent of people with cancer will ultimately die of their disease, so I want to draw and write about what it’s like to be confronting one’s death, at least as I have witnessed it. What can medicine offer those people, and what can’t it? So I want to introduce a character who dies. I feel like there’s so much that’s already happened in Jane’s story, and I could go back and fill in the details. The mutation steps that turn a cell into a cancer cell, that’s actually a really complicated transformation that I could explore in greater depth.

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Medical Education, Patient Care, Stanford News, Surgery, Videos

Why become a doctor? A personal story from a Stanford plastic surgeon

Why become a doctor? A personal story from a Stanford plastic surgeon

Recent graduates: Never fear if you haven’t picked a career yet; it’s never too late to figure out what you want to do when you grow up. I’m on my third career, and Rahim Nazerali, MD, now an assistant professor of surgery at Stanford, is on his second.

He explains in this recent Stanford Health Care video:

I had a career in international health and I felt like I wasn’t interacting with enough people, I was doing a lot of behind the desk work and I never really interacted with the people I was affecting. I entered medicine for that reason.

And when he entered medical school at Brown University, Nazerali thought he would pursue emergency medicine or orthopedics. But he was wrong again. In the video, he describes a surgery — which he watched on his first day on a plastic surgery rotation — that convinced him that this field was the one for him. Plastic surgeons converted a gaping post-tumor chest hole into a natural looking chest: “You could hardly even tell that anyone was there,” Nazerali said. “At that point, I thought, ‘I want to do that.'”

Now, he’s on the front lines of patient care, where he hopes to stay.

“Many patients come back in after they have their confidence back, after they have their life back, after they have their time with their family back,” Nazerali said. “That’s what makes it really rewarding.”

Previously: Why become a doctor? A personal story from a Stanford oncologist, Students draw inspiration from Jimmy Kimmel Live! to up the cool factor of research careers and Stanford’s senior associate dean of medical education talks admission, career paths

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