Curiosus Magazine: Case Study from Werremeyer Creative

PROJECT: CLIENT:

Curiosus Magazine

Barnes-Jewish Hospital

VOL. I, SPRING 2018

CURIOSUS THE ART AND SCIENCE OF MEDICINE

BARNES-JEWISH HOSPITAL + WASHINGTON UNIVERSITY PHYSICIANS

WHEN BARNES-JEWISH HOSPITAL’S EDITOR OF PUBLICATIONS DECIDED TO LEAVE ST. LOUIS AND MOVE TO BRUNSWICK, MAINE, WERREMEYER CREATIVE STEPPED IN TO HELP SUPPORT THE HOSPITAL AND ITS PUBLISHING PROGRAM. WE BUILT A SPECIALIZED CUSTOM-PUBLISHING TEAM THAT INCLUDES THE HOSPITAL’S FORMER EDITOR, ANNE MAKEEVER, WHO NOW SERVES AS OUR PUBLICATIONS EDITOR. Werremeyer has provided graphic design and project management services to Barnes-Jewish Hospital for nearly a decade, helping to publish its award-winning series of magazines called Innovate — a stable of more than 14 titles with distribution to more than 500,000 consumers and physicians across the United States.

In response to the hospital’s desire to launch a new magazine to replace Innovate, Werremeyer Creative assembled an accomplished team of graphic designers, a project manager, and an editor to complete the task.

We were challenged with delivering a smart, modern, welldesigned, and well-written magazine about medical science innovation that would engage consumers and physicians, while encouraging brand loyalty and patient referrals.

Werremeyer Creative managed all aspects of the production process, from identifying story ideas and managing freelance writers to overseeing printing and attending

press checks. We scheduled and oversaw photoshoots, worked with illustrators, and combed through stock photo resources, all while collaborating with our remote editor.

Now that the first edition of the new magazine, called Curiosus (Latin for “curious”), has launched, we’ve been thrilled with the overwhelming success and praise the publication has already garnered. Barnes-Jewish Hospital is equally as pleased, as we’ve already begun early work on the next edition of Curiosus, to be mailed in early fall 2018.

Developing and producing Curiosus is just one such way the Werremeyer Creative team is able to deftly communicate and collaborate across departments, organizations, and state lines in the name of delivering creative work of an unrivaled quality. Stay tuned to learn more about Curiosus as it continues to grow and evolve as a leading medical news publication.

PROJECT PARTNERS:

EDITOR:

Anne Makeever

WRITERS: Sari Harrar, Pam McGrath, Connie Mitchell, Andrea Mongler, Jo Ann Shroyer, Washington University School of Medicine PHOTGRAPHY:

Jay Fram Photography

ILLUSTRATION: PRINTER:

Abigail Goh Illustration

HPR Printing

werremeyer.com @WEAREWERREMEYER

CURIOSUS kyoor-ee-OH-sus; Latin; adjective Eager to learn or know; inquisitive

LETTER FROM THE PRESIDENT

welcome

TABLE OF CONTENTS

bench

breakthroughs from the lab

At Barnes-Jewish Hospital, our mission is to take exceptional care of people. We do this by asking questions and finding

MICROBES 4 | GUT VS INFLUENZA

answers, by collaborating, learning and improving. We offer Curiosus magazine as a way of including you in the

bedside

breakthroughs in patient care

10 |

FETAL SURGERY: THE NEW NORMAL

policy

in depth

how health care works

16 |

features

26 | STROKE: EVERY SECOND

GATHERING EVIDENCE

COUNTS

history

conversation.

milestones from the archives

6|

Curiosus is designed for the curious — those who want to know more about health, disease, research and the art and science of medicine. We hope it will not only answer

CAN LAUGHING GAS DETER SUICIDE?

12 |

NEW TREATMENT, NEW HOPE

TCAR AND STROKE RISK

20 |

questions about the complexities of medicine and health care, it will provoke them, too.

AND THE 7 | ITCH IMMUNE SYSTEM

How do our bodies fight disease? What can be done to correct illness in an infant before birth? How can we, as caregivers and patients, learn to face terminal illness?

Is there a better way to treat depression? If you want to know, turn the page.

14 |

32 | CAR-T IMMUNOTHERAPY:

TREATING PAIN IN THE E.D.

TRANSPLANT THEN & NOW

THE 36 | EASING FINAL JOURNEY

q&a

interviews from the inside

last word

essays on life, health and medicine

8|

22 |

RISKS TIED TO HEARTBURN DRUGS

41

ART & HEALING

|

PEERING INTO THE FUTURE

Bob Cannon President, Barnes-Jewish Hospital

on the cover |

STROKE SPECIALISTS ON THE HELIPAD AT BARNES-JEWISH HOSPITAL IN ST. LOUIS, MISSOURI. FIND THE STORY ON PAGE 26.

CURIOSUS

SARI HARRAR

Sari Harrar is an award-winning freelance journalist specializing in health, medicine and science.

She is a contributing writer for Consumer Reports on health and writes frequently for AARP Magazine and Bulletin. Her work also appears in national magazines, including Reader’s Digest; Eating Well; O, The Oprah Magazine and Prevention.

She was a 2016 National Magazine Awards finalist.

PAM MCGRATH

Pam McGrath is a St. Louis-based communications professional with 35 years of experience.

Since 1994, she has worked as

a freelance writer and editor specializing in health care and nonprofit organizations. And she is a founding member and president of River City Pops, a singing ensemble that has entertained in the St. Louis area for more than 20 years.

CONNIE MITCHELL

A native of St. Charles, Missouri, Connie Mitchell is a graduate of the University of MissouriColumbia School of Journalism.

She regularly contributes to local and national publications, specializing in topics related to health and wellness. When not writing or editing, she enjoys reading, drinking good coffee

“

bench | breakthroughs from the lab

Research is formalized curiosity. It is poking and prying with a purpose. — Zora Neale Hurston

GUT MICROBES VS INFLUENZA

CONTRIBUTORS with friends, travel, camping and hiking, and spending time with her husband and two grown sons.

ANDREA MONGLER

BARNES-JEWISH HOSPITAL, a nonprofit academic institution and the largest hospital in Missouri, is consistently listed on the Honor Roll of America’s Best Hospitals by U.S. News & World Report and is ranked No. 1 in St. Louis and No. 1 in Missouri. Barnes-Jewish Hospital was the first adult hospital in Missouri to be certified as a Magnet hospital for its nursing excellence.

WASHINGTON UNIVERSITY SCHOOL OF MEDICINE is a leading medical research, teaching and patient-care institution, currently ranked seventh in the nation by U.S. News & World Report.

Barnes-Jewish Hospital is a member of BJC HealthCare, one of the largest nonprofit health care organizations in the United States.

Barnes-Jewish Hospital and Washington University School of Medicine are nonproit organizations and do not endorse commercial products or services.

The 1,400 specialty and primary-care clinicians who make up Washington University Physicians comprise the medical staff at Barnes-Jewish and St. Louis Children’s hospitals. Washington University Physicians also provide comprehensive medical care at multiple locations throughout the St. Louis region.

MICROBES THAT LIVE IN THE GUT DON’T JUST DIGEST FOOD. THEY ALSO HAVE FAR-REACHING EFFECTS ON THE IMMUNE SYSTEM. A NEW STUDY SHOWS THAT A PARTICULAR GUT MICROBE CAN PREVENT SEVERE FLU INFECTIONS IN MICE, LIKELY

BY BREAKING DOWN NATURALLY OCCURRING COMPOUNDS CALLED FLAVONOIDS. THESE COMPOUNDS ARE COMMONLY FOUND IN FOODS SUCH AS BLACK TEA, RED WINE AND BLUEBERRIES.

JO ANN SHROYER

Andrea Mongler is a freelance writer and editor who specializes in medical and public-health topics. She frequently covers the latest medical research, including for Physician’s Briefing, a medical news service for health care professionals.

She has written extensively for various health care organizations and has also reported on other topics, including business, food and the environment. Her work has appeared in the Midwestfocused food magazine Feast, the

OUR RESEARCH SHOWS YOU NEED THE RIGHT MICROBES IN THE INTESTINE TO CONTROL THE IMMUNE RESPONSE. — THADDEUS STAPPENBECK, MD, PHD

St. Louis Business Journal, and Louisiana-based Lagniappe and Thrive magazines.

Science writer Jo Ann Shroyer has written stories for public radio, as well as for numerous magazines, newspapers and websites. She also has authored two books on science topics for major publishers. She lives in Santa Fe, New Mexico.

The research, conducted in mice by scientists at Washington University School of Medicine, also indicates that this strategy is effective in staving off severe damage from flu when the interaction occurs prior to infection with the influenza virus. This work could also help explain the wide variation in human responses to influenza infection.

WASHINGTON UNIVERSITY SCHOOL

“For years, flavonoids have been thought to have protective properties that help regulate the immune system to fight infections,” says Ashley Steed, MD, PhD, first author of the study and a pediatrician who treats intensive-care patients at St. Louis Children’s Hospital. “Flavonoids are common in our diets, so an important implication of our study is that it’s possible

OF MEDICINE SCIENCE WRITERS

Tamara Bhandari, Jim Dryden, Kristina Sauerwein, Julia Evangelou Strait

bench

Curiosus is published biannually by Barnes-Jewish Hospital.

Editor Anne Makeever

Contributing editor Juli Leistner

“It’s not only having a diet rich in flavonoids, our results show you also need the right microbes in the intestine to use those flavonoids to control the immune response,” says pathologist and immunologist Thaddeus Stappenbeck, MD, PhD, the study’s senior author. “We were able to identify at least one type of bacteria that uses these dietary compounds to boost interferon, a signaling molecule that aids the immune response. This prevented influenza-related lung damage in the mice. It is this kind of damage that often causes significant complications such as pneumonia in people.”

4 | Gut microbes vs influenza 6 | Can laughing gas deter suicide?

Design Werremeyer Creative

7 | Itch and the immune system

MANAGE YOUR SUBSCRIPTION

Address changes Curiosus Circulation Mailstop 90-29-930 4590 Children’s Pl., Suite 6400 St. Louis, MO 63110

”

Influenza, which is characterized by fever, cough and body aches, is a common and sometimes deadly viral infection of the upper respiratory tract. Older adults, pregnant women, young children and people with chronic health problems such as asthma and heart disease are most prone to serious flu complications.

Since 2004, an average of 113 children have died from influenza in the U.S. each year, according to the Centers for Disease Control and Prevention. The World Health Organization estimates that, around the world, there are 250,000 to 500,000 flu-related deaths annually.

Previous evidence suggests that the gut microbiome may be important in protecting against severe influenza infections, so in this study, the researchers aimed to identify just what gut microbes might provide that protection.

Breakthroughs From the Lab

Contributing writers Tamara Bhandari, Jim Dryden, Sari Harrar, Pam McGrath, Connie Mitchell, Andrea Mongler, Julia Evangelou Strait, Kristina Sauerwein, Jo Ann Shroyer

flavonoids work with gut microbes to protect us from flu and other viral infections. Obviously, we need to learn more, but our results are intriguing.”

8 | Risks tied to heartburn drugs

As part of the study, the researchers screened human gut microbes looking for one that metabolized flavonoids. Stappenbeck and Steed identified one such microbe that they suspected might protect against flu damage. The microbe, called Clostridium orbiscindens,

Subscribe Barnes-Jewish.org/curiosus Send an email to the editor anne@werremeyer.com

degrades flavonoids to produce a metabolite that enhances interferon signaling.

“The metabolite is called desaminotyrosine, or DAT,” Steed says. “When we gave DAT to mice and then infected them with influenza, the mice experienced far less lung damage than mice not treated with DAT.” Interestingly, although the lungs of DAT-treated mice didn’t have as much flu damage, their levels of viral infection were identical to those in mice that didn’t get the treatment. “The infections were basically the same,” Stappenbeck notes. “The microbes and DAT didn’t prevent the flu infection itself; the mice still had the virus. But DAT kept the immune system from harming lung tissue.” That’s important because annual flu vaccines aren’t always effective at preventing infections.

“But with DAT, it may be possible to keep people from getting quite as sick if they do become infected,” Steed says. “This strategy doesn’t target the virus. Instead, it targets the immune response to the virus. That could be valuable because there are challenges with therapies and vaccines that target the virus due to changes in the influenza virus that occur over time.”

Next steps for researchers include identifying other gut microbes that may use flavonoids to influence the immune system, as well as exploring ways to boost the levels of bacteria in people whose intestines aren’t adequately colonized with those microbes. As the studies are planned, researchers say it might not be a bad idea to drink black tea and eat foods rich in flavonoids before the next flu season begins.

RESEARCHERS HAVE FOUND THAT A PARTICULAR GUT MICROBE CAN PREVENT SEVERE FLU INFECTIONS IN MICE, LIKELY BY BREAKING DOWN NATURALLY OCCURRING COMPOUNDS COMMONLY FOUND IN FOODS SUCH AS BLACK TEA, RED WINE AND BLUEBERRIES.

— JIM DRYDEN

Read the study: wumcnews.org/microbesandlu.

TO MAKE AN APPOINTMENT WITH A PHYSICIAN, call 314-TOP-DOCS (314-867-3627) or 866-867-3627 (toll free). barnesjewish.org | vol. I, Spring 2018 3

2 CURIOSUS | Barnes-Jewish Hospital and Washington University Physicians

bench | breakthroughs from the lab

bench | breakthroughs from the lab

CAN LAUGHING GAS DETER SUICIDE? SUICIDE IS ONE OF THE TOP 10 CAUSES OF DEATH IN THE UNITED STATES AND IS THE 10TH LEADING CAUSE OF DEATH IN MISSOURI. AMONG MISSOURIANS AGES 10-24, SUICIDE IS THE SECOND LEADING CAUSE OF DEATH. ON AVERAGE, ONE PERSON IN THE STATE DIES BY SUICIDE EVERY EIGHT HOURS.

Researchers at Washington University School of Medicine are studying the use of nitrous oxide, also called laughing gas, as a treatment for people who are hospitalized due to suicidal thoughts. They are investigating using the gas as a possible treatment to speed up recovery and reduce risk of suicide.

“Suicide attempts and suicidal thinking often stem from an individual’s belief that there’s no way out of a situation other than ending one’s life,” says psychiatrist Charles Conway, MD, one of the study’s main investigators. “We think nitrous oxide might help patients break out of that mindset and realize they do have options.”

Conway and anesthesiologist Peter Nagele, MD, have been studying laughing gas — commonly used in dental offices to alleviate pain and anxiety — as a potential treatment for severe depression. About 85 percent of those who attempt suicide are clinically depressed, so the researchers want to evaluate whether the gas may help people who are at high risk of such attempts.

TWO-THIRDS OF THOSE TREATED WITH NITROUS OXIDE EXPERIENCED IMPROVEMENT IN THEIR SYMPTOMS.

As many as one-third of people with clinical depression don’t respond to existing drug and psychotherapy treatments, but in an earlier study of 20 people with treatment-resistant depression, Nagele and Conway found that two-thirds of those treated with nitrous oxide experienced improvement in their symptoms.

Most standard antidepressant drugs affect norepinephrine and serotonin receptors in the brain, but such drugs can take weeks to improve a person’s symptoms. Nitrous oxide interacts with a different type of receptor in the brain — NMDA glutamate receptors — and improves symptoms in some patients within hours, Nagele notes.

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4 CURIOSUS | Barnes-Jewish Hospital and Washington University Physicians

“Nitrous oxide may very quickly improve depression in these patients,” he says. “The gas has very few side effects because it leaves the body very quickly once people stop breathing it. However, it appears from our previous research that the antidepressant effects of nitrous oxide may linger in the brain long after the drug is out of the body.”

In this new study — funded by a grant from the American Foundation for Suicide Prevention — people who have attempted suicide will breathe a mixture of oxygen and nitrous oxide for one hour, every other day, for one week.

Half of the anticipated 50 study participants will receive the combination of nitrous oxide and oxygen, along with antidepressant drugs or talk therapy normally prescribed during such a hospitalization. The rest of the people in the study will receive standard treatment with antidepressants and psychotherapy, and will receive oxygen without any nitrous oxide for one hour, every other day, for a week.

“We’ll do outpatient follow-ups in the weeks after the patients have been discharged to see whether their suicidal thoughts or depression might be re-emerging,” Conway says. “Suicidal thinking often occurs following short-term psychiatric hospitalizations. If such problems re-emerge, the study is designed to provide ‘booster’ treatments with nitrous oxide, which we believe will continue to lower the likelihood of future suicidal thoughts.”

— JIM DRYDEN

ITCH AND THE IMMUNE SYSTEM

RISKS TIED TO HEARTBURN DRUGS MILLIONS OF AMERICANS TAKE PRESCRIPTION DRUGS CALLED PPIS, OR PROTON PUMP INHIBITORS, TO TREAT HEARTBURN, ULCERS AND OTHER GASTROINTESTINAL PROBLEMS. AND MANY OF THESE PPIS ARE WIDELY AVAILABLE AS OVER-THE-COUNTER DRUGS UNDER BRAND NAMES THAT INCLUDE PREVACID, PRILOSEC, NEXIUM AND PROTONIX. WHILE PPIS ARE EFFECTIVE AT REDUCING STOMACH ACID, THEY HAVE ALSO BEEN LINKED TO HEALTH PROBLEMS, INCLUDING LOW MAGNESIUM LEVELS, BONE FRACTURES AND THE GUT INFECTION C. DIFFICILE.

PEOPLE WHO SUFFER ITCHING WITH NO CLEAR CAUSE MAY HAVE PREVIOUSLY UNRECOGNIZED IMMUNE SYSTEM DEFECTS. “AS DOCTORS, WE THROW THINGS LIKE ANTIHISTAMINES, OINTMENTS AND LOTIONS AT PATIENTS WHO SUFFER CHRONIC ITCHING, BUT IF THERE IS SOMETHING PROFOUNDLY ABNORMAL ABOUT THE IMMUNE SYSTEM — AS IT APPEARS THERE IS — THEN WE CAN’T SOLVE THE ITCHING UNTIL WE ADDRESS THOSE UNDERLYING CAUSES,” SAYS WASHINGTON UNIVERSITY DERMATOLOGIST AND RESEARCHER BRIAN KIM, MD. “The immune system needs to be in balance, and we hope to find ways to restore that balance in patients with this very debilitating condition.”

Kim and other researchers from the Center for the Study of Itch at Washington University School of Medicine conducted a small study of people that identified immune-system irregularities that may prompt the urge to scratch. In the study, researchers took blood samples and skin biopsies from participants to look for immune problems. They found “an incredible amount of dysfunction,” Kim says, adding that he has seen similar defects in numerous additional patients not included in the current study.

In this study, the four people researchers zeroed in on were ages 75 to 90. In blood samples, three of those four had high levels of the protein IgE — an immunoglobulin that is a marker of inflammation.

Dysfunction in the immune system may be the underlying cause of some types of chronic itching.

Immunoglobulins are antibodies deployed by the immune system to fight infections. Elevated levels of IgE are often seen in people with allergies. The research team also noted very low levels of an immunoglobulin known as IgG; abnormally low counts of a type of immune cell called a CD8 T-cell; and an elevated number of immune cells called eosinophils, which are markers of allergic inflammation.

A trio of studies conducted by researchers at Washington University School of Medicine indicates that longtime use of PPIs is associated with serious kidney damage, including kidney failure, as well as an increased risk of death.

“We advise people to limit the use of PPIs only to when they are medically necessary and for the shortest duration possible with the smallest effective dose,” says Ziyad Al-Aly, MD, a Washington University kidney specialist and senior author of the studies.

“Curiously, none of these patients had any history of allergic disorders,” Kim says. “We often see similarly high counts of eosinophils in patients with eczema, but the patients we studied didn’t have eczema. They didn’t even have a rash. Only itching.”

Kim notes that dermatologists frequently take skin biopsies when a patient has a rash, but with chronic itching of unknown origin, also known as chronic idiopathic pruritis, there is nothing evident to biopsy. The study’s first author, Amy Xu, a medical student in Kim’s lab, says most people with this type of unexplained itching tend to be older and develop itching problems later in life. “It may be caused by some sort of wear and tear on the immune system,” Xu says.

Because of the small number of people in the study, it’s too soon to draw firm conclusions, but the itching may be an indication that something else in the body is going wrong, Kim says. “We have begun working on a mouse model in which the animals have similar defects,” he adds. “We want to learn whether these changes in the immune system create only itching or whether they could be signs that some other problem is present.”

Photo by Robert Boston

MEDICAL STUDENT AMY XU AND PRINCIPAL INVESTIGATOR BRIAN KIM, MD, FOUND THAT IMMUNE SYSTEM DEFECTS MAY HELP EXPLAIN CHRONIC ITCHING.

The research involved analyzing medical records in national Veteran’s Administration databases to identify more than 173,000 users of PPIs and, as a comparison, 20,000 users of other stomach-acid suppressing drugs called H2 blockers.

Following the study’s participants for five years, Al-Aly and a team of researchers found that chronic kidney disease affected 15 percent of PPI users who took the drugs over the course of the study compared with 11 percent of H2 blockers. After controlling for age and other health conditions associated with PPI use, the team found a 28 percent increased risk of kidney damage among PPI users.

— JIM DRYDEN

PPI users were also at a significantly higher risk — 98 percent — of developing kidney failure compared with users of H2 blockers, although this occurred in less than 1 percent of the overall people studied.

Among more than half of PPI users who developed chronic kidney damage, a follow-up study indicated that such problems developed silently, without symptoms, gradually eroding kidney function and leading to long-term kidney damage or, in some cases, kidney failure.

In a third study, PPI users had a 25 percent increased risk of dying over the next five years, compared with those taking H2 blockers. The database did not include information on cause of death. However, the researchers calculated that, for every 500 people taking PPIs for a year, there is one extra death that would not have otherwise occurred. Given the millions of people who take PPIs regularly, this could translate into thousands of excess deaths every year, Al-Aly says.

Although the recommended treatment regimen for most PPIs is short — two to eight weeks for ulcers, for example — many people end up taking the drugs for months or years.

“A lot of times people get prescribed PPIs for a good medical reason, and patients just keep getting refill after refill,” Al-Aly says. “Physicians and patients should regularly reassess the use of such medications, and physicians should stop prescribing the medications if they’re not necessary. Most of the time, people don’t need to take PPIs for years.”

bedside

Breakthroughs in Patient Care 10 | Fetal surgery: the new normal 12 | TCAR for carotid artery disease 14 | Treating pain in the ED

— TAMARA BHANDARI, KRISTINA SAUERWEIN

Read the study: wumcnews.org/itchandimmune.

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“

...art complete we explore it v to it or receiv way — it’s the makes us hu

” BELOW LEFT: STROKE SPECIALISTS ON THE HELIPAD AT BARNES-JEWISH HOSPITAL. BELOW: NEUROLOGIST ANDRIA FORD, MD, MSCI, TALKS WITH A PATIENT RECOVERING FROM STROKE.

“

es us, whether visually, listen ve it in some e best of what uman beings.

” BELOW: NEUROINTERVENTIONAL RADIOLOGIST AKASH KANSAGRA, MD, MS, USES IMAGING TO GUIDE STROKE TREATMENT.

ABOVE AND ABOVE LEFT: EMERGENCY-MEDICINE SPECIALIST PETER PANAGOS, MD, FACEP, FAHA, BEGINS TREATMENT FOR A PATIENT WITH STROKE.

q&a | interviews from the inside

Art & Healing

BY PAM MCGRATH | PHOTOS BY JAY FRAM

Ten years ago, Sarah Colby established the Arts + Healthcare program at Barnes-Jewish Hospital. With a master of fine arts degree from the Maryland Institute College of Art, her background encompassed 25 years of teaching and administrative positions at art schools, community art centers and children’s arts programs in Baltimore, New York City, Cincinnati and St. Louis. Though her experiences had prepared her for most any position dealing with the arts and people, she tackled a new set of challenges when she became part of the complex world of a large teaching hospital.

During a recent interview, Colby talked about the arts and healing, about how art can affect the lives of patients and staff members, and how she has learned to deeply appreciate the human impulse to create, no matter the circumstances.

“

I FEEL HONORED EVERY SINGLE DAY THAT PEOPLE ALLOW ME TO ENTER CHAPTERS IN THEIR LIVES THAT MAY BE THE MOST CRITICAL THEY WILL EXPERIENCE.

Artist and philanthropist Bunny Burson was a catalyst. She was a powerful force in arts and health care in Nashville years ago, and she was a passionate advocate for an arts program at the hospital after she moved to St. Louis.

With a background in academia, you chose a new path by taking responsibility for developing the Arts + Healthcare program. Why? When I moved to St. Louis 16 years ago, I began working with young people and children through several organizations. When I moved from academia “out into the world,” I came to realize how important art is to all people, not just to those who make it their life’s work.

This experience reinforced my belief that art completes us, whether we explore it visually, listen to it or receive it in some other way — it’s the best of what makes us human beings.

How do you start a program like this?

I spent time researching hospital-based arts programs and visited a few, especially in the Midwest. The director of the Gifts of Art program at the University of Michigan Medical School consulted with me here in St. Louis, and she gave me valuable pieces of advice: Develop an in-depth understanding of the Barnes-Jewish Hospital community and become part of it rather than remain outside of it. Realize your colleagues will be an incredible resource. Take on the challenge without fear. And, finally, understand it will take at least five years to get the program off the ground. That last piece was a bit of a surprise!

Then I met the director of Barnes-Jewish Hospital’s Arts as Healing program, the precursor to Arts + Healthcare. She explained what she was doing — much of her focus was working with people who had cancer — and I thought the idea of bringing art into a hospital setting was fascinating.

When she left the position, the opportunity to develop a new program for Barnes-Jewish Hospital came my way.

And how did you get it off the ground?

It started quietly. I began by talking with staff members, especially nurse managers. I described the vision I had for the program — to include the arts as an integral aspect of the healing environment for patients, families and caregivers. I wanted to create an environment of respite and renewal in the midst of what can be stressful.

— SARAH COLBY, MFA, COORDINATOR, ART + HEALTHCARE

”

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In Depth | cover story

STROKE RECOVERY DEPENDS ON QUICK THINKING AND FAST ACTION FOR EVERYONE INVOLVED, FROM BYSTANDER TO SURGEON. ONE TEAM OF SPECIALISTS, WORKING TO SHAVE MINUTES OFF TREATMENT TIME, HAS RISEN TO THE CHALLENGE.

Stroke: Every Second Counts

BY SARI HARRAR PHOTOS BY JAY FRAM

A TEAM OF SPECIALISTS AT THE BARNES-JEWISH AND WASHINGTON UNIVERSITY STROKE & CEREBROVASCULAR CENTER REVIEW A PATIENT’S BRAIN SCAN.

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In Depth | feature

HE WAS YOUNG — STILL IN HIS 40S — AND FACING A DEVASTATING DIAGNOSIS: CONGESTIVE HEART FAILURE THAT WOULD END HIS LIFE TOO SOON. READILY ADMITTING THAT HIS OWN LIFESTYLE DECISIONS HAD BROUGHT HIM TO THIS PLACE, MR. D (HIS NAME HAS BEEN CHANGED TO PROTECT HIS PRIVACY) SUFFERED FROM WHAT COULD ONLY BE DESCRIBED AS TRANSCENDENTAL ANGST.

Easing the Final Journey

BY JO ANN SHROYER ILLUSTRATION BY ABIGAIL GOH PHOTOS BY JAY FRAM

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36 CURIOSUS | Barnes-Jewish Hospital and Washington University Physicians

In Depth | easing the final journey

Last Word | essays on life, health and medicine

PEERING INTO THE FUTURE

BY MARTY REISWIG says, “but I think he had decided to go for broke. It was important to him, and it was worth a try.”

MICHAEL KOLLER, MD, AN INTERNAL MEDICINE SPECIALIST, DISCUSSES CARE OPTIONS WITH COLLEAGUES.

Palliative care is often described as a new approach to patient care, having been approved in 2006 as a subspecialty by the American Board of Medical Specialties.

“But it’s actually a very old idea,” says Periyakoil, who describes it as a kind of old-style medicine that was practiced before the 20th century advent of antibiotics, cardiac resuscitation and other lifesaving procedures. “It’s the very heart of medicine,” she adds. “With all our new technological advances, I think at times we forget what it means to be a healer.” The introduction of hospice care by British physician Cicely Saunders in the 1960s fostered what Periyakoil describes as a cultural shift for medicine, with an emphasis on palliative care and a more patient-centered approach.

Social workers and a chaplain helped Mr. D. figure out how to talk with his family.

“He practiced the conversation with us, but he did all the work himself,” Allen-Berger says. “Ultimately, most people just want to know that their lives matter, and that they won’t suffer too much or be a burden to their families.”

The team encourages people receiving palliative care to review their life histories and remember the major events, accomplishments and themes that give meaning to their lives. The goal is to restore the dignity that can be lost during a devastating illness. As a result, family members often learn powerful things they didn’t know about their loved ones.

This life review helps patients “look back and tell their stories, revisit the meaningful times, and think about their legacies,” says Burke, while acknowledging that not every patient and every family can do that. Each patient has his or her own take on what personal assessment needs to be done, she notes, and it’s important in palliative care to be agile and responsive.

People are going to get sick, Dans says. “And they are still going to die. The death rate for our species is 100 percent,” she notes wryly.

“The question is, how do we want to live up to that point?”

AT CENTER: CHRISTA BURKE, MSW, LCSW, IS ONE OF TWO SOCIAL WORKERS ON THE TEAM.

In the end, Mr. D’s family forgave him.

Burke and her colleagues collaborated with a case manager and social worker in the nursing unit to help him get home. It was not an easy task. Mr. D was connected to a continuous-infusion pump that delivered a controlled dose of medication to manage his symptoms. But the team helped arrange his five-hour flight from Missouri to the West Coast, engaging a national infusion company to ensure there would be no disruption in his medication. A member of Mr. D’s family flew with him.

This kind of collaboration is a hallmark of the palliative-care approach, Burke adds.

Team members make sure that everyone caring for a patient is communicating to make problem-solving possible.

While the palliative care team sometimes provides bereavement counseling for families after a loved one has died, team members often don’t find out how a story ends. Many on the team say this is one of the hardest things about what they do. But the team did receive a note from Mr. D, who wanted to tell them he had made it home safely. And to say thank you. ✹

Dignity, meaning and compassion

For his part, Mr. D. simply wanted his family to forgive him and allow him to come home for his last days. “He knew he was facing possible rejection,” Allen-Berger

DO YOU WANT TO KNOW IF YOU’LL DEVELOP ALZHEIMER’S IN THE NEXT 10 YEARS? THIS IS THE QUESTION I’M FACED WITH DAILY. MY NAME IS MARTY REISWIG, AND MY FAMILY HAS BEEN STUDIED FOR DECADES BECAUSE WE CARRY AN EXTREMELY RARE GENETIC MUTATION THAT CAUSES EARLY ONSET ALZHEIMER’S DISEASE.

MARIA DANS, MD, LEADS THE PALLIATIVE CARE SERVICE.

40 CURIOSUS | Barnes-Jewish Hospital and Washington University Physicians

My grandfather became symptomatic in his 40s and died the year I was born. My uncle’s age of onset was 54, and he passed at 61. And my father was diagnosed at 54, too, and is in the final stages of the disease at 65.

Because my grandfather was one of 14 children, our family tree is far-reaching, which is why we’re a valuable asset to the Alzheimer’s research community.

We jokingly call ourselves the X-Men because we are mutants who want to help save the world from Alzheimer’s. Many of us are participants in the Dominantly Inherited Alzheimer’s Network (DIAN) and affiliated drug trials. The DIAN project has 36 research locations around the globe — with one at Washington University — and its researchers study fewer than a thousand people like me who are at risk of inheriting the dodgy gene mutation. Some families suffer from an even earlier age of onset, in their 30s.

You can probably imagine the fear and loneliness we grapple with as a result of our genetic makeup.

To cope, hundreds of us have found one another and hold a deeply moving and meaningful annual conference, where we listen to what researchers and pharmaceutical companies have learned and — perhaps most importantly — connect with one another.

In my estimation, about half the men and women at risk to carry one of these genes have chosen to receive genetic testing and learn their status. I have chosen not to — for now. I don’t want to know yet because of the impact that knowledge would have on the people in my life. If testing reveals I possess the genetic mutation, my wife and my mother will begin suffering from sorrow well before I develop symptoms, and my children will know that they have a 50 percent chance of sharing my fate. For now, my wife and I choose to appreciate the moment, because I might have about 10 years left of mental clarity. However, I’m nearly 40 now and, as

I begin to plan and prepare for the future, the burden of not knowing grows and could become greater than the burden of knowing. My wife and I want to be honest, knowledgeable and as prepared for the future as we can be while still enjoying the present. It’s a delicate and difficult balance.

My fellow X-Men around the world are committed to the taxing research studies we participate in because we’re passionate about eradicating this horrible disease from our families and the rest of the world. How rich in heritage would our world be if Alzheimer’s wasn’t a threat? Imagine the stories passed down, the memories held and shared. We want our grandchildren to read about Alzheimer’s in history books like you and I read about polio.

MARTY REISWIG IS A PARTICIPANT IN ALZHEIMER’S RESEARCH AT WASHINGTON UNIVERSITY SCHOOL OF MEDICINE.

Just received my first issue and love it. Thanks so much for having me on your mail list.

What a great idea from a world class institution.

JIM SHINN

Chesterfield, MO

I received my first edition of Curiosus today. It is WONDERFUL! Absolutely beautiful and great writing.

Congrats. I am sure this was a heavy lift! Already looking forward to the next edition.

JILL FRIEDMAN

Vice Chancellor for Public Affairs

I just received the first publication of Curiosus and very much enjoyed reading it from cover to cover.

I want to commend you and your team for such a useful and very well written publication; it is by far the most informative publication from any medical establishment in STL. I look forward to the next publication.

GABE SROUJI

Recently I received a copy of the Spring issue of Curiosus containing a fascinating series of articles on medical advancements aimed at providing human care. I wish to thank you and Barnes-Jewish for this publication.

Thanks again for your work as edition of this fine publication.

THE REV. DR. JERALD C. JOERSZ

Anne, received Voi. 1 , Spring 2108 from Barnes-Jewish Hospital over the weekend and I want to say thank you for sending to me and also I thought the information was wonderful and insightful. I read it all the way through.

The articles on strokes and the old practice of bloodletting were very interesting. Again, thanks for sending and I look forward to the next one.

P.S. As the Village Administrator of Shiloh, thank you for your presence in our community.

Looking forward to Siteman coming to town.

JOHN

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