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Fulfilling the Promiseof living—and dying—well

ONE LIFE: A PATIENT EXPERIENCE

PAUL AND JOHN ST. HILAIRE:RESTORING ONE FAMILY’S FAITH IN HEALTH CAREIn the early months of 2013, Paul St. Hilaire’s health took a turn for the worse. The 84-year-old accountant from Manchester, New Hampshire, had developed atrial fibrillations due to a failing aortic valve in his heart and was suffering from severe degenerative joint disease in his right hip. Paul needed both his heart valve and the joint in his hip replaced.

But he and his son John, who served as his health care advocate, were losing faith in the health care system after a series of bad experiences. “Other places were putting things like dollars, insurance and egos before the patient; they made us feel like a number,” says John.

That all changed when John’s extensive research to find an alternative to open-heart surgery for his dad led them not to Boston, as they had expected, but to Dartmouth-Hitchcock (D-H)—where Paul underwent an advanced, minimally invasive procedure called transcatheter aortic valve replacement (TAVR). TAVR is a treatment for patients with severe aortic stenosis who are not ideal candidates for traditional open-heart surgery.

Before the TAVR procedure, Paul couldn’t walk five feet without being out of breath. “Immediately after the surgery, I was able to breathe normally. It was amazing,” he says.

The St. Hilaire family was so impressed with the care they received, they chose to return to D-H two months later—when Paul had a minimally invasive hip replacement procedure, called anterior hip arthroscopy, with Dr. Ivan Tomek in Orthopaedics. “The hip is perfect; there’s no pain whatsoever,” says Paul, who still enjoys doing work around his house.

“Both care experiences were phenomenal,” he says. “The doctors came in every single day to ask questions and do tests to make sure everything was going well. They introduced themselves by their first and last names. That was impressive; it made us feel like old friends. And the nursing staff kept asking what else they could do for us. They made us feel like we’d known them forever.

From the first appointment, we understood that the system wasn’t broken. Somebody had it right, and it was Dartmouth-Hitchcock.”

contents

4 Fulfilling the Promise

9 Snapshots in Giving

10 A Game-Changer for Epilepsy Patients

16 Nora & Juniper: An Ideal Outcome to a High-Risk Pregnancy

20 Why Not? How Could We...?

22 Going the Extra Mile

24 Nancy and Jerry Mitchell – More than a Tradition

about this issue

This issue of Imagine is dedicated to the patients and families who have bravely dealt with difficult courses of treatment and end-of-life challenges. Because of a generous gift, Dartmouth-Hitchcock will now be able to provide even more support through the new Center for Palliative and Hospice Care. The photo on the cover of this issue symbolizes the compassionate and loving care that we hope all patients receive in their final days.

credits

Editors Victoria McCandless Kate Villars Managing Editor

Anne Clemens Design Erin Higgins David Jenne

Writers Steve BjerklieTim DeanJennifer DurginE. Senteio Photography Mark WashburnUnless otherwise noted

“I KNOW WHO YOU ARE. YOU’RE DR. DEATH,” said Karen the first time I met her. She was sitting cross-legged on the floor, amid a sprawl of clothes, in her room at the Children’s Hospital at Dartmouth-Hitchcock (CHaD). She was working on a bead necklace in a design that resembled intricate Moroccan latticework. Her slender hands vibrated in a fine tremor, impressing me with the patience and concentration it must have required to string those tiny beads. Without missing a beat, she speared a few more beads with her long needle.

“Well, actually, I like to think what I do is about liv-ing,” I replied. “Our Palliative Care team focuses on people’s comfort and quality of life and helps people who are dealing with difficult courses of treatment.” I paused, giving her a chance to respond. She didn’t.

“You don’t have to be dying for us to help,” I contin-ued. “You just have to be seriously ill. I understand that, unfortunately, you are pretty ill.”

“Yu-up,” she said with a sarcastic inflection.

“But tell me, are you dying?”

“Yeah, I know I’m going to die. When you’ve been told three hundred times that you are going to die, who cares?”

of living—and dying—well Fulfilling the promise 2

Shown in picture: Karen Vago (1989-2006)

MAKING PEACE WITH THE END OF LIFEA $10-million gift to Dartmouth-Hitchcock will launch the creation of the new Center for Palliative and Hospice Care and challenge others in the region to support the cause.

2

Karen was 15 years old then, and suffered from cystic fibrosis (CF), a congenital disease that clogs the airways with thick mucus and eventually destroys the architecture of the lungs. CF is best known as a respiratory disease, but it is also a disease of the gut and endocrine system and can cause cirrhosis of the liver. Karen had it all. In addition to downing a daily regimen of 12 different pills, she inhaled foul detergent-like mists and antibiotic sprays every few hours to loosen her clotted secretions. She was prone to infections and slow to heal, she needed insulin injections twice a day, and for 15 minutes three times a day she endured “cupping and clapping” treatments—when her mother, a therapist, or sometimes a mechanical vest would beat on her chest to loosen the mucus in her lungs.

All the efforts of Karen’s doctors, nurses, pharmacists, nutritionists, respiratory therapists and her mother, could not keep Karen from inexorably becoming sicker and sicker over the next two years. She was hospitalized frequently, and during those times we gradually developed a friendship. Occasionally, she would let go of her stoicism and cry or laugh just like the kid that she was. Even when Karen was not in the hospital, I heard from her mother regularly. She knew the Palliative Care team was there for her and Karen when they needed us.

Eventually, Karen and her mother began talking with each other, and with me, about stopping her treatments and accepting the fact that she was dying. Karen missed her family and her friends, and she didn’t want to spend the rest of her life in the hospital. Even for me, a Palliative Care doctor, that was hard to accept. But Karen’s wishes were clear. It was my job and the job of our team to help Karen live out her final days in the way that she and her family wanted, despite her complex medical needs.

When Karen returned home for good, we coordinated with her hospice nurse to review the medications and treatments that would be needed to alleviate the expected problems of fever, intense pain and extreme shortness of breath. On a cold fall day in 2006, Karen died peacefully at home under the tender care of a hospice nurse and her loving family.

“She was beautiful to the very end,” her mother told me later that day on the phone. “She just snuggled up and went to sleep. We all kissed her and stroked her hair . . .”

As painful as it was to know that Karen was gone, we took solace in knowing that she had lived her final days in relative comfort and that her wishes had been honored. An adapted excerpt from The Best Care Possible,

by Dr. Ira Byock. This excerpt has been edited and shortened for publication here, with

permission from the publisher, Penguin Group.

“It was my job and the job of our team to help Karen live out her final

days in the way that she and her family wanted,

despite her complex medical needs.”MAKING PEACE WITH THE END OF LIFE

3

For nearly, two decades, Dartmouth-Hitchcock’s Palliative Care team has been transforming how people with serious illness are cared for by matching the care they receive with their personal needs, values and preferences.

4

LANDMARK GIFT LAUNCHES NEW CENTERJanet Albert gazes at a photo of her daughter, who

was cared for by the D-H Palliative Care team.

IF YOU’RE LIKE MOST AMERICANS, you would prefer to be cared for at home or in a home-like setting if you are faced with a debilitating, incurable illness. Yet, that’s not how it works out for most. The majority spend their last days in hospitals and nursing homes. Why this disconnect between what we want and what actually happens?

“The experience of dying has changed dramatically in the last 60 years,” explains Dr. Ira Byock, who led Dart-mouth-Hitchcock’s Palliative Care team from 2002 to 2013 and is a renowned expert in the field. “In many ways, dying has become a lot harder because we

have so many remarkable treatments for serious illnesses. That’s a good thing. But an unwavering focus on sustaining life can leave people with advanced dis-eases feeling physically uncomfortable and personally lost and confused.”

Leaders at Dartmouth-Hitchcock (D-H) believe that the experience of living with serious illness and the care indi-viduals receive through the end of life must—and can—change dramatically. Inspired by this vision, an anonymous donor has pledged $10 million to help Dartmouth-Hitchcock launch a new Center for Palliative and Hospice Care.

“This incredibly generous gift is really a contribution to our community and region,” says Dr. James Weinstein, CEO and president of Dartmouth-Hitchcock.

“It provides us an opportunity to dra-matically improve care for those living with incurable illnesses and their fami-lies, while advancing research and edu-cating care providers from throughout northern New England and beyond. It’s the hope of our benefactor that others will join in raising the rest of the funds needed to build a world-class Palliative and Hospice Care Center.”

The new 12-bed center will be an advanced clinical facility, providing interdisciplinary, patient- and fam-ily-centered care for patients with life-threatening illness and complex medical needs. Caregivers in the facility will attend to the physical, emotional and spiritual needs of patients and their families in a comfortable, home-like setting.

D-H has launched an ambitious fund-raising campaign to raise the additional $10.5 million needed to support and en-dow patient and family services within the center, research and education activities, and operating expenses.

Plans for the center were informed by a needs assessment and feasibility study. An active search is underway for a new director to lead palliative care at D-H and the new center.

“The Section of Palliative Medicine is currently in great hands with the in-terim leadership of Dr. Sharona Sachs,” says Dr. Richard Rothstein, chair of the Department of Medicine. “Our patients and their families continue to benefit from the superb care provided by our Palliative Medicine team.”

Dr. Sharona Sachs, right, speaks with the Palliative Care team during rounds.

Fulfilling the promise

85%

of living—and dying—well

The average time spent in the hospital during

the last six months of life for patients over 65 with

chronic illness.

85%

of patients with chronic illneses say they want to avoid hospitalization and intensive care when they are dying.

5

A Regional—and National—OpportunityThe benefits of the new Center for Palliative and Hospice Care are multiple. The center will fill a growing regional need for inpatient hospice beds, accepting patients from D-H and other health care and hospice providers in the region. It will offer unprecedented educational opportu-nities for doctors, nurses and other cli-nicians, regionally and nationally. The center will conduct research aimed at developing innovative approaches to support seriously ill people and their families and will investigate the impact of best practices on quality and cost. Most importantly, it will allow for the right care to be delivered in the right place, better aligning the care that seriously ill people receive with what they want.

“This extraordinary gift offers us the opportunity to partner with col-leagues across the region to expand care options for patients with serious illness,” says Dr. Sharona Sachs, inter-im section chief of Palliative Medicine. “We envision the new center becom-ing a state-of-the-art care facility for patients requiring intensive symptom management, a comprehensive ed-ucational resource supporting re-gion-wide excellence in palliative and hospice care, and a center of knowl-edge and innovation nationally.”

While most hospice care in northern

New England and elsewhere in the U.S. is home-based, some patients have medical needs that are too complex to manage in a home setting. Too often, these patients remain in intensive care units or linger in nursing homes, waiting for one of the few inpatient hospice beds in New Hamp-shire or Vermont to open up. With the region’s population aging, the need for this specific type of care is mounting.

“Opening an inpatient palliative care and hospice center is the right thing to do for our region and a critical step on the path to creating a sustainable health system that improves the lives of the people and communities we serve,” says Weinstein. “By carefully matching the care patients receive with their values, preferences and priorities, we can give people the care they want and need through the end of life.”

Preparing for the FutureBy 2020, approximately 17 percent of New Hampshire’s population will be older than age 65, according to conser-vative estimates by D-H planners. By 2030, almost 22 percent will be older than 65. In Vermont, the percentages are even higher. Since the over-65 age group makes up nearly all hospice patients, demand for inpatient hospice care in northern New England is ex-pected to soar in the next 15 years.

“As the population in New Hampshire 6

85%

85%

and throughout New England ages, Dartmouth-Hitchcock’s investment in palliative care and hospice services will prove invaluable for our seniors and other chronically ill citizens across the region,” says United States Senator Jeanne Sha-heen of N.H.

About one-fourth of all Medicare spend-ing goes to pay for the care of individuals in their last year of life, according to researchers at The Dartmouth Institute for Health Policy and Clinical Practice, publisher of the widely cited Dartmouth Atlas. Palliative and hospice care that aligns with patients’ values can help reduce those costs. Dartmouth-Hitch-cock’s financial office estimates that, on

average, patients who are served by the Palliative Care team incur costs that are $400 less per patient day than for com-parable patients who are not served by the team. Other forward-thinking health systems have found similar cost savings.

“Dartmouth-Hitchcock has already shown that much better care is feasible and affordable—that a leading, acute-care medical center can give authentic whole-person care through the end of life,” says Byock.

“Although great advances in palliative and hospice care have been made in the last decade, too many people are still dying in ways they would not want, often in intensive care units, connected to machines,” Weinstein says. “Thanks to this extraordinary gift, we can now extend our leadership in palliative care to create a facility dedicated to the physical comfort, emotional and spiri-tual well-being and inherent dignity of each patient and his or her family.”

TO LEARN HOW YOU CAN SUPPORT THE CENTER, call the Office of Development at 603.653.0700 or visit http://d-h.org/giving

“Opening an inpatient palliative care and hospice center is the

right thing to do for our region and a critical step on the path

to creating a sustainable health system that improves the lives of

the people and communities we serve,” says Dr. James Weinstein,

CEO and president of D-H.

Fulfilling the promise of living—and dying—well

15% under 65.

The over-65 age group makes up nearly 85% of hospice patients.

Percent of New Hampshire population over age 65.

Estimates for Vermont are a bit higher.

7

DURING THE FINAL WEEKS OF HER LIFE, Edith Shifra Wise was showered with laughter, memories and love as she and her family waited for the inev-itable. Although she had endured a successful bone marrow transplant for multiple myeloma a few years before, the cancer had returned, aggressively, and there were no viable treatments remaining.

“What started as a journey filled with great uncertainty, sadness, broken hearts and despair at being so helpless was soon transformed into a celebration of Shifra’s life,” says her husband of 42 years, Mort Wise. “But that wouldn’t have happened if we were left on our own.”

Shifra Wise spent the final 25 days of her life under the care of Dartmouth-Hitch-cock’s Palliative Care team. The team attended to her comfort and medical needs—which would have been too dif-ficult to manage at home—as well as the emotional and psychological well-being of her and her family. That approach helped the Wise family make the most of the time they had left together and inspired them to make a gift to the Pallia-tive Care Program after her death.

“We were guided to use the time avail-able as a time to celebrate,” explains Mort Wise. “That idea sounded foreign at first. But then we began to understand that the time we had was very valuable.”

He and his children filled Shifra’s room with flowers, photo albums and, most importantly, themselves.

“What started as a journey filled with great uncertainty,

sadness, broken hearts and despair at

being so helpless was soon transformed into a celebration

of Shifra’s life,” says Mort Wise. “But

that wouldn’t have happened if we were

left on our own.”

FACING DEATH BYCELEBRATING LIFE

Dartmouth-Hitchcock’s financial office estimates that on average, patients who are served by the Palliative Care team generate $400 less in costs per patient day than similar patients who are not served by the team.

“We began to share stories, reminisce, laugh, cry, reveal our feelings and our anguish,” says Wise. “And we did all of this usually with Shifra participating, sitting up in her bed, positioned with ample pillows, while we gathered around. This was our family joyfully celebrating Shifra’s life.”

While facing death is never easy, Wise says he and his children recall with a certain degree of fondness those final days in the hospital. Before that experience, he thought palliative care meant simply pain relief. Now he knows that, at its best, palliative care can also help patients and their families face serious illness—and sometimes death—with

dignity, grace and as much comfort as possible.

“We were new at this—this watching and waiting for my beloved wife, my children’s beloved mother, to descend into the shadow of death,” says Wise.

Knowing that many of the services the Palliative Care Program provides are not currently reimbursed by health insurers, he established a planned gift in 2012 for the benefit of the program.

“The Palliative Care team was the reason we were able to cope as well as we did,” he comments. “They were with us because they wanted to be, not because they had to be.”

85%

Fulfilling the promise of living—and dying—well

PHO

TO: M

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C. H

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Snapshots in Giving

The generosity of donors is vital to Dartmouth-Hitchcock’s mission of advancing health through research, education, patient care and community partnerships. Thanks to all who help us sustain our mission.

Lectureship Honors Granquist’s ServiceHealth policy is a subject of keen in-terest to Wayne Granquist, former chair of the Dartmouth-Hitchcock (D-H) Board of Trustees, and the focus of a new annual lecture cre-ated in his honor and which he and his wife, Deborah, helped to fund. The Wayne and Deborah Granquist Health Policy Grand Rounds recog-nizes his years of service to D-H and the generous gifts he and Deborah have made to the institution.The endowed lectureship will bring an individual of national stature to D-H to speak on health policy issues every year.

Granquist’s long career in busi-ness and public service included his tenure as a highly regarded member of the Carter Adminis-tration, serving officially as the associate director of the Federal Office of Management and Bud-get and unofficially as a skilled speech writer and strategist for President Carter. “Rarely were the skills of a politician and diplo-mat more adroitly applied than by Wayne in his service to the Board,” observed Professor Rob-ert Oden, the current chair of the D-H Board of Trustees.

Supporting Kids All Day, Every DayAt the Children’s Hospital at Dart-mouth-Hitchcock (CHaD), child life specialists provide emotional support, ease fears, help explain treatment plans and create op-portunities for developmentally appropriate play and socialization. But until recently, their valuable services were limited to weekday mornings and early afternoons. That changed after a successful pilot project funded by a grant through the Dunkin’ Donuts & Baskin-Robbins Community Foundation. The grant allowed CHaD to test the impact of child life specialists being available eve-nings and weekends. The results convinced staff to make the ex-tended hours permanent.

“Child life specialists can now assist more patients and families and pro-vide better care because they are available when needed the most,” says Jessica Laperle, child life manager. An estimated 1,250 more patients per year will benefit from the support of child life specialists.

Gift of Gratitude for Cancer Care“This is our way of saying ‘thank you’ for showing us compassion and guidance at a difficult time in our lives,” says Gail Durant of the generous gift she made to Dartmouth-Hitchcock’s Norris Cotton Cancer Center in memo-ry of her late husband, Bob. “Dr. Camilo Fadul and his staff guided us every step of the way. Donat-ing to his work through the Brain Tumor Research Fund was a deci-sion Bob and I made together.”

Durant hopes the gift will ad-vance research and care for patients with glioblastoma mul-tiforme, which took Bob’s life in April 2013.

“We were guided through a journey that we couldn’t pos-sibly have handled alone, and the focus was always on Bob’s quality of life,” adds Durant. “I can think of no better way to ‘pay that forward’ than to contribute to research that will help future patients.”

Lectureship Honors Granquist’s Service

9

A GAME-CHANGER FOR EPILEPSY PATIENTS

Life has been transformed for Chrissy Goodman (left, with her daughter, Madelyn) after a neurostimulation device was implanted into her brain, putting an end to life-long seizures.

10

she agreed to be implanted with a NeuroPace RNS (responsive neurostimulation sys-tem) device 12 years later as part of a research study, seizures were ruling Chrissy’s life, often leaving her inca-pacitated and having to rely on family members to care for her daughter, Madelyn.

“I had more than 200 seizures throughout my pregnancy,” Goodman remembers. “The worst was 18 in one day. Sometimes, a seizure causes me to be unconscious, and I won’t know I

had the seizure until I either wake up in the emergency room or I’m lying in my bed two days later, wondering what happened.”

Goodman was one of seven Dart-mouth-Hitchcock patients who were enrolled in the research study, which was funded by the National Institutes of Health and involved 29 centers in the U.S. Under the care of principal inves-tigator Dr. Barbara Jobst, Neurology, all seven have seen significant seizure reduction. These results, and the results from other centers, led the Food and

Drug Administration to approve the new treatment in December of 2013.

In the BeginningBack in 2007, Jobst was excited by the potential of NeuroPace’s innovative brain stimulation device. A self-de-scribed “techie,” she’d been trying for years to find better treatments for epilepsy, working alongside pioneers in her field such as the late Dr. Peter Williamson, and neurosurgeon Dr. David Roberts, in D-H’s highly regarded epilepsy program. D-H is a top referral

center for treating the most complex and difficult cases of epilepsy.

Still, she had some reservations. “I had to say to patients, ‘We don’t know if this will work, and we’ll need to implant this device into your brain,’ which is a pretty invasive thing to do,” recalls Jobst. “I thought, ‘How in the world am I going to convince patients to do that?’ But many wanted to enroll in the study, not just for themselves but to advance re-search that might help others. The other side of the coin was how bad must their disease be for them to agree to do this?”

“Sometimes, a seizure causes me to be unconscious, and I won’t know I had the seizure until I either wake up in the emergency room or I’m lying in my bed two days later, wondering what happened." Chrissy Goodman

At 14, Chrissy Goodman was in a car accident and hit the right side of her head. A month later, she had her first grand mal seizure.

11

“Nothing to Lose”For patients who aren’t surgical candidates to have the seizure-prone areas of their brain removed—for fear it would damage vital brain functions such as memory—and whose epilepsy can’t be controlled with anti-convulsive medications, the outlook is usually pretty bleak.

Kevin Ramsey’s seizures started at birth. “I don’t think I realized what they were for quite a long time,” he says. “My mom used to say that they’d make me go limp and that my lips would turn blue from not breathing right. They actually stopped for a while, but they came back when I was in middle school and got worse after that. Having a seizure is hard to describe. At first you can’t breathe, then when you try to tell someone what’s happening, you can’t talk. I would always sleep a lot after-wards, because they took so much out of my body.”

The unpredictability of his seizures made finishing school and finding employment a challenge. “I lost a lot of jobs because I’d have a seizure when I was at work; I had to be taken away by ambulance several times,” he says. “I lost my driver’s license and had to move in with my mom for a while. When Dr. Jobst approached me about the trial, it was a little scary. I was only the second person at Dart-mouth-Hitchcock to agree to do it. But I felt like I had nothing to lose.”

Dr. Barbara Jobst with patient.

12

“When Dr. Jobst approached me about the trial, it was a little scary. I was only the second person at Dartmouth-Hitchcock to agree to do it. But I felt like I had nothing to lose.” Kevin Ramsey

Testing a Novel Treatment

Patients participating in the study began with a sometimes long and ardu-ous testing process. This involved going off their medications so doctors could study their seizures, using advanced imaging and localizing techniques in D-H’s epilepsy monitoring unit. Surgeons were then able to implant the device and its probes precisely into

areas of the brain where the seizure activity originated.

“The device has seizure detection mech-anisms, and, when it detects the onset of a seizure, it can be programmed to provide a counter-stimulus electrically to the appropriate area,” explains Roberts, who performed many of the procedures. “This often aborts the seizure before it can do harm.”

At home, patients used a laptop to download the brain activity stored in the device each day and sent the information electronically to the study center. “We reviewed the information and had the patients come in for adjustments,” says Jobst. “Working with a technician from the manufacturer, we were able to fine-tune the settings for each patient, which was important because every patient’s seizures are different.”

Life Changing Results

Goodman’s quality of life has improved dramatically with the implant. She has gone back to school, is seeking employ-ment as a medical assistant, and is able to enjoy activities with family and friends. Best of all, she can give her daughter the time and loving attention she deserves.

“It allows my mom and me to have the

Kevin Ramsey

13

closest thing to a normal life, and I’m very grateful for that,” says 10-year-old Madelyn, who accompanied her moth-er to an FDA hearing in 2012 to testify in favor of approving the device.

“I can’t say enough about my care team at Dartmouth-Hitchcock and what they’ve done for me,” says Good-man. “Dr. Jobst is a wonderful woman. She’s become a friend. I couldn’t ask for anybody else to take care of me.”

Regaining IndependenceRamsey has been seizure-free for more than two years. He’s gotten his driver’s license back and has moved into a place of his own. “It feels great to regain my independence,” he says. “I’ve been cleared to start looking for work again, and I’m doing some of the outdoor activities I love to do, like hunting and fishing.”

“There’s no way I’d have gotten this far without the NeuroPace device,” he adds. “I love my doctors at Dart-mouth-Hitchcock; Dr. Jobst and my care team have helped me a lot.”

“A life with seizures is a miserable life,” says Jobst. “That’s why I want to be an advocate for patients and families who struggle with epilepsy. This isn’t about me or the people who invent these things. It’s about patients like Chrissy and Kevin. They are the true heroes.”

Dr. David Roberts, right, during surgery.14

2015Year the Geisel

School’s Williamson Translational

Research Building is scheduled to open

CLINICAL TRIALS $18 million

Clinical and Translational Science Award awarded to

Dartmouth College and D-H from the National Institutes of Health last year

Before any new medication or med-ical device—such as the NeuroPace implant—is widely used in the U.S., it first must be proven safe and effective in select groups of patients, in studies known as clinical trials. Long, arduous, and expensive to run, clinical trials are the essential final step in translating biomedical discoveries into better care for patients.

“The NeuroPace implant is a wonderful example of what clinical trials, or more broadly, translational research is all about,” says Dr. Alan Green, director of Dartmouth SYNERGY: the Dartmouth Clinical and Translational Science Insti-tute, and the Raymond Sobel Professor of Psychiatry. “Translational research is focused on trying to understand, ‘What’s the right treatment for the individual?’ The overall aim is to speed discoveries from basic science into ap-plications for patients and populations.”

On any given day, there are hundreds of Dartmouth-Hitchcock patients

participating in ongoing clinical trials. Last year alone, more than 1,500 patients enrolled in 256 clinical trials at D-H. For patients with rare conditions or who have exhausted treatment options, clinical trials offer access to the latest experimental therapies. But

2%The national

average of clinical trial

participation among cancer

patients last year

>1,500Number of patients

who enrolled in clinical trials at D-H

last year

256Number of clinical trials that enrolled

patients at D-H last year

11%Number of D-H

cancer center patients who

participated in clinical trials

last year

many patients participate in clinical trials simply to be part of advancing research that may help future patients. An impressive 11 percent of patients at Dartmouth-Hitchcock Norris Cotton Cancer Center are enrolled in clinical trials, compared to a national average among cancer centers of around 2 percent.

“We’ve built a robust research enter-prise,” says Green of the academic medical center, which includes Dart-mouth-Hitchcock and the Geisel School of Medicine, “based on our strengths in basic science and out-comes research. That has allowed us to be quite competitive, even as federal dollars for medical research have be-come increasingly scarce.”

That “robust research enterprise” continues to grow. Fundraising con-tinues for the Geisel School’s William-son Translational Research Building, currently under construction on the Dartmouth-Hitchcock Medical Center

campus and scheduled to open in 2015. And last fall, Dartmouth College and Dartmouth-Hitchcock were awarded a five-year, $18 million Clinical and Translational Science Award from the National Institutes of Health, which will fuel research at Dartmouth-Hitch-cock and the Geisel School of Medi-cine, and almost certainly lead to more clinical trials at D-H.

“It will help galvanize our research efforts and enhance our capacity to innovate and produce research that makes a difference in people’s health and in their lives,” Green says.

FOR MORE INFORMATION ON CLINICAL TRIALS, VISIT: http://d-h.org/clinicaltrials

ON THE LEADING EDGE OF TRANSLATIONAL RESEARCH

Dr. Alan Green

15

16When Jen and Tom Moore were expecting their second child, they had no idea that they were about to join a unique club. “First, the ultrasound technicians told us we were having twins,” recalls Jen. “Then they said they couldn’t find the membrane that separates them.” Jen was carrying monoamniotic-monochorionic twins.

NORA & JUNIPER AN IDEAL OUTCOME TO A HIGH-RISK PREGNANCY16

“It’s pretty rare,” says Dr. Michele Russell, MPH, of the Children’s Hospital at Dartmouth-Hitchcock (CHaD). “No-body has a whole lot of experience with this.” But Russell has handled a few mono-mono pregnancies in her specialty area of maternal fetal medi-cine. Since Dartmouth-Hitchcock is a referral hospital, Russell estimates that providers see about three sets a year.

Mono-mono twins, as they are called, develop when an embryo does not split until after formation of the amniotic sac. These identical twins share the pla-centa, but have two separate umbilical cords. This is where the troubles lie: the possibilities of cord entanglement and compression causing oxygen or blood flow problems are major concerns. “We also worry about twin-to-twin transfu-sion syndrome,” explains Russell. “You could have an artery or vein that com-municates between the two babies, and one twin may get more blood supply and the majority of the nourishment, causing the other twin to become undernourished.”

Joining the Club“I was sent directly to the high-risk care team right after the ultrasound,” Jen says. “They told me all the risks; it was scary that we could end up with two special needs babies. Tom was like a deer in the headlights.”

“All the information came at us at once,” remembers Tom. “I was in utter shock. Twins were enough … but then finding out it was a really risky pregnancy—that was a lot to take in.” But the Moores held onto something Russell had told them: “Right then, we had two healthy babies.”

When a woman is carrying mono- mono babies, Russell explains, “We admit them to the hospital when the twins reach the gestational age of between 26 and 28 weeks. That’s when fetal outcomes would be good if they were delivered early. We want to reduce the higher risks of stillbirths and of neurological problems by monitoring the babies carefully during the pro-longed hospitalization.”

Twenty-six weeks into her pregnancy, Jen was admitted to the hospital for constant monitoring. She would remain hospital-ized for the rest of her pregnancy.

Susan Gordon, RN, a member of Jen’s care team, remembers, “We tried to make her as comfortable as possible while she was here, while monitoring her daily on the external fetal monitor. The twins were small and very active, so it was a bit of a challenge to find and keep them on the monitor. We had to ensure we were registering two separate heartbeats. I don’t remember Jen complaining one time while she was here. She was always optimistic.”

Monoamniotic-monochorionic twins occur in 1 in 10,000 pregnancies.

Jen (left) and Tom Moore holding Nora and Juniper. 17

Home Away From Home“My stay at Dartmouth-Hitchcock was amazing,” Jen laughs. “I loved every second of it.” Tom agrees: “We got into a great routine. My father and Jen’s mom really helped out by staying with Des, our two-year-old, while I was at work. Then they would take him to the hospital, and I would zip up there right after work. We’d go to Molly’s Place at CHaD [see sidebar on next page], which we loved, and watch our son playing with all the great toys. Then we’d sit and have a cup of coffee and chat with everyone there. They were wonderful people and super nice.” Jen adds, “Darcy and Leslie [CHaD family assistants] became really good friends. Molly’s Place gave Des—our little champion—a fun place and made him excited about coming to the hospital. He just asked recently when he could come back.”

Then they would head back to the Birthing Pavilion. “Everyone there was so accommodating and helpful, always trying to make it so we felt at home,” says Tom. “A big part of our hospital routine was to still have dinner togeth-er as a family, and then give Des a bath before we headed home. They even set it up so on the weekends we could spend a night with Jen.”

“As much as they could, Jen, Tom and Des created this new normal on the Birthing Pavilion,” recalls Gordon, who along with Jennifer Robtoy, RN, even threw a surprise baby shower for Jen. It was a joint effort with all the nurses. “We don’t always have the opportunity to do it for all our long-term patients, but we do it if we can,” says Gordon.

Early ArrivalA couple of days later, during her reg-ular monitoring, Jen says, “they started to see a decrease in one of the twin’s heartbeats.” Cesarean sections are the norm with mono-mono births, and the goal was to make it to 34 weeks. “We made it to 32 weeks and six days,” Jen remembers.

“After 32 weeks, the higher risk for mono-mono twins continues to be about 10 percent,” Russell says, “which is why we think about delivering them even if there aren’t complications. With Jen, the change in her moni-toring prompted us to deliver even though the babies were premature, because at 32 weeks premature babies usually do well.”

Jen gave birth to Nora and Juniper on April 10, 2013, and soon was on her way home. The twins, however, would spend five weeks in the Neonatal Intensive Care Unit (NICU). Although they were generally healthy, they had jaundice and episodes of apnea (trouble breathing) and bradycardia (slow heart rate). “It was scary,” Jen recalls, “but it was also exciting. Overall they were healthy, and we had been prepared for them being in the NICU.”

“They were teeny,” says Tom, “but they didn’t look that small to me. They were just my beautiful baby girls.”

The Ideal OutcomeWhen Tom reflects on their experience, he says it “taught us that no matter what life throws at us, we are going to

step up and get through it together with as much positive energy as we can. For anyone else who is going through the situation, I would say, ‘Keep your head up. You can get through it.’”

“The support staff and everyone at CHaD were with us through every stage,” he adds. Jen agrees. “With the care that we got from CHaD and Molly’s Place, my wonderful nurses, my amazing doctors,” Jen says, “I just look back at the whole thing fondly.”

Nora and Juniper, now just over a year old, are “healthy, beautiful and won-derful,” says their mother. According to their father, “They are pretty much the cutest things you’ve ever seen. I’m not biased whatsoever. Just imagine cuteness in stereo.”

Young patients enjoy the resources available at Molly’s Place.

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FOR FAMILIES WITH KIDS BEING CARED FOR at Children’s Hospital at Dartmouth (CHaD), Molly’s Place offers a welcome get-away from the clinical aspects of the hospital. While toys and play structures create a safe place for children to play, “it is so much more,” says Leslie Fall, MD, founding section chief for Pediatric hospital medicine at CHaD and associ-ate dean for faculty development at the Geisel School of Medicine.

Molly’s Place has a lending library of well over 600 books, videos and resources; there are free individualized health-care notebooks that parents can use to track their child’s health and educational needs, and there is a stroller program to help parents transport children from one section of the hospital to another. There are support groups and comfort-able chairs, snacks and fruit, gas vouch-ers and coffee, and always someone to answer questions and provide direction. “We continue to evolve,” says Fall, “to find any way we can to improve the family’s experience.”

Fall was instrumental in starting the cen-ter more than a decade ago, and gen-erous gifts from the Hendricks-Felton Family Foundation—of which she is a member—have helped it to thrive. “At the time,” Fall recalls, “I would see fam-ilies whose child had a chronic disease, or who had received a new diagnosis, struggling to find resources. There

wasn’t a single place for them to go, or someone to help them understand the interface between the hospital and the available community resources.” In 2008, CHaD’s Family Center was named “Mol-ly’s Place” after Amalia (Molly) Zacharias Felton. “I can just imagine her watching all the kids and being happy,” says Fall, who also happens to be Molly’s grand-daughter.

Molly’s Place staff are like ambassadors, working to aid families in better under-standing and addressing the complex-ities and services beyond a diagnosis. Kathy Stocker, program manager for the Boyle Community Pediatrics Program, says, “We want to empower families with the information and resources that may help them.”

“In order for this program to continue to run,” Stocker explains, “we look to do-nors for support. Molly’s Place, including staffing and all resources, is 100 percent funded by philanthropy.”

“Additional philanthropy is always really important,” says Fall. “Although we would love to be able to fully fund the program, my family’s foundation is not large enough yet. We can’t cover all of the ongoing support and maintenance of the family center on our own. Time and again, we hear from families about how much having the center, and the support it provides, has meant to them. If Molly’s Place wasn’t there, can you imagine what these families would do?”

CAN YOU IMAGINE Molly’s Place

FOR FAMILIES WITH CHILDREN BEING CARED FOR at the Children’s Hospital at Dartmouth -Hitchcock (CHaD), Molly’s Place offers a welcome getaway from the clinical aspects of the hospital. While toys and play structures create a safe place for chil-dren to play, “it is so much more,” says Dr. Leslie Fall, founding section chief for Pediatric Hospital Medicine at CHaD and associate dean for faculty development at the Geisel School of Medicine.

Molly’s Place has a lending library of well over 600 books, videos and resources; there are free individualized health care notebooks that parents can use to track their child’s health and educational needs; and there is a stroller pro-gram to help parents transport children from one section

of the hospital to another. There are support groups and comfortable chairs, snacks and fruit, gas vouchers and coffee, and always someone to answer questions and pro-vide guidance. “We continue to evolve,” says Fall, “to find any way we can to improve the family’s experience.”

Fall was instrumental in starting the center more than a decade ago, and generous gifts from the Hen-dricks-Felton Family Foundation—of which she is a mem-ber—have helped it to thrive. “At the time,” Fall recalls, “I would see families whose child had a chronic disease, or who had received a new diagnosis, struggling to find resources. There wasn’t a central place for them to go, or someone to help them understand the interface between the hospital and the available community resources.” In

2008, CHaD’s Family Center was named “Molly’s Place” after the late Amalia (Molly) Zacharias Felton. “I can just imagine her watching all the kids and being happy,” says Fall, who also happens to be Molly’s granddaughter.

“For this program to continue to run,” explains Kathy Stocker, program manager for the Boyle Community Pe-diatrics Program, “we look to donors for support. Molly’s Place, including staffing and all resources, is 100 percent funded by philanthropy.”

“Additional philanthropy is always really important,” says Fall. “Time and again, we hear from families about how much having the center means. If Molly’s Place wasn’t there, can you imagine what these families would do?”

CAN YOU IMAGINE? MOLLY’S PLACE

Molly’s Place staff are like

ambassadors, working to aid

families in better understanding and

addressing the complexities and

services beyond a diagnosis.

19

Dartmouth-Hitchcock’s (D-H) reputa-tion as an innovation leader in health care comes from an impressive string of advances in technology (the Center for Surgical Innovation is one exam-ple), procedures (the new NeuroPace RNS procedure to treat epilepsy is another example), health care man-agement (e.g. D-H’s leadership in the founding of accountable care organi-zations) and helping to advance the health of the communities D-H serves.

For Terry Carroll, PhD, D-H’s chief inno-vation officer, innovation is at the heart of what it means to be a sustainable health system. “For me, innovation is a lot of asking questions. ‘Why not? And how could we?’” he says. “It’s about ask-ing how you optimize what you have.”

Chief innovation officers, or CINOs, are still unusual in health care, making D-H a leader in this kind of execu-tive thinking. Carroll says CINOs are gaining prominence, and are increas-ingly connected with the application of technology. But the new tools of tech-nology won’t accomplish much without new, innovative ways to use them.

Caroll describes his role at D-H as “help-ing the organization think through new ways to approach patient care and treat-ment, because the current health care and business models don’t have enough gas left in them to last the long term.”

But new models, he adds, need to be carefully considered before they’re put into action. “We need to ask ourselves:

What’s the right thing to do? What will both expand our capability yet protect us at the same time? Telehealth is a prime example of bringing new capa-bility to health care and developing technology and doing the right thing with it.”

Carroll believes the health care industry needs new systems that will deliver health and patient care in a dynamic and fast moving environment. “My fo-cus is to help D-H find the new models and create the work systems that will allow us to be a sustainable health sys-tem for the communities we serve for generations to come. Focusing on these new work systems will be extremely helpful in re-framing health and the way we approach patient care,” he says.

WHYNOT?As D-H’s Chief Innovation Officer, Terry Carroll asks “Why not?” and “How could we...?”

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The Three-Step ProcessCarroll arrived at D-H last year after guid-ing information services and innovation at several health care organizations, including Fairview Health Services in Minnesota and the Detroit Medical Center. A New England native, he’s a graduate of St. Michael’s Col-lege in Winooski, VT, and earned graduate degrees in biomedical engineering from Car-negie-Mellon University in Pittsburgh, PA.

There are three types of innovation that are important and in use today at D-H, explains Carroll. “The first type of innovation focuses on finding new solutions or opportunities that will fundamentally change D-H,” he says. “This type of innovation requires that we seek ‘new truth.’ Examples include the the work that we are doing to find new and fundamentally different payment and oper-ating models to reach our goal of achieving a sustainable health system.

“The second type of innovation is the scaling of prototypes so that they can deliver value to the patients and populations being served by our health system. Examples of this type of innovation are our work to bring tele-health to our communities and the develop-ment of monitoring devices to support our patients at home.

“The third type of innovation is the optimi-zation of our existing operations to drive performance and value. This type of innova-tion is routine and a main focus of the work being done at the Value Institute at D-H.”

In the past, to go from new-model planning to implementation usually required several years, sometimes decades. “The challenge we have now in health care is that the cycle is about 18 months,” he comments.

With the innovation cycle now on the fast track, Carroll believes D-H has much more potential to unlock in eD-H, its electronic health record system. “It’s a real opportunity for us,” he says. “It’s my intent to create innovation zones to unlock the full potential.”

Moving ForwardHealth care is ripe for broad, far-reaching innovation, Carroll emphasizes. Up to now, advances in health care technologies have outpaced the ability to cost-effectively implement those technologies. “The venture capitalists are out there waiting for the next big thing in health care,” he says. “There’s going to be a big-bang disruption, and I want D-H to be in front of it so our patients and communities can reap the benefits.

“But I feel like we’re already a step ahead,” he continues. “Right now we’re working on an innovation strategic plan that will be an integral part of Dartmouth-Hitchcock’s fu-ture. We’re connecting the full capabilities of our employees. If there’s one thing I believe in, it’s that the power of ‘us’ is much greater than the power of ‘me.’ We need to take full advantage of all the people at D-H as we look to the future.”

“HOW COULD WE...?”

?“My focus is to help D-H find the new models and create

the work systems that will allow us to be a sustainable health system for the communities we serve for

generations to come.” Terry Carroll

On Carroll’s desk are coasters with his fundamental innovation questions: “I don’t get it,” and “90 days? Do it in 30.”

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G O I N G T H E E X T R A M I L E

Making Hearing Aids More Affordable for Low-Income PatientsWhat started as an idea to help one patient in Dartmouth-Hitchcock’s (D-H) Audiology clinic five years ago has grown into a program that now helps many patients each year. The Refurbished Hearing Aid Program at D-H, put in place to help low-income patients obtain the hearing aids they need, relies on the generosity of others. Donated hearing aids—any style, any make, any age—are sent to the repair divi-sion of Starkey, a major hearing-aid manufacturer, and credit is given for each hearing aid. As funds ac-

cumulate in D-H’s Starkey account, D-H purchases refurbished hearing aids for patients in need. All of the refurbished hearing aids are behind-the-ear models, and they come with a one-year repair warranty. Qualifying patients receive one hearing aid at no charge.

Hearing loss is very common—it’s estimated that nearly one in five Americans age 12 and older expe-rience hearing loss that is serious enough to hamper their ability to communicate. “Even a mild hearing

loss can have a significant impact on a person’s quality of life,” says Julie Johnson, coordinator of Adult Audiology at D-H. “We try not to send anyone away without some form of hearing assistance. The generosity of those who donate hearing aids to us makes that possible. We thank them, and our patients thank them.”

FOR MORE INFORMATION: about the Refurbished Hearing Aid Program, contact Kristi Ameden at 603.650.4897.

Physicians at Dartmouth-Hitchcock’s Norris Cotton Cancer Center can now more precisely tailor cancer treatments based on the genetic mutations in individual tumors. “Previously we tested certain cancers for specific mutations,” says Gregory Tsongalis, PhD, director of molecular pathology. “Now, with a genomic sequencing test, we can provide testing that is more comprehensive and looks for mutations in the 50 most common cancer genes.”

By identifying specific mutations in a tumor, physicians can choose medications that better target the tumor. The Cancer Center currently tests tumor samples from metastatic colon cancer, melanoma, gliomas and non-

small cell lung cancers, and will soon add testing for breast cancer, leukemia and lymphoma.

The new test, called the Ion Torrent AmpliSeq Cancer Hotspot Panel, is often used in research settings. Earlier this year, the Cancer Center became the first in New En-gland to offer it clinically for all patients who may benefit from the results. The laboratory has run more than 400 patient samples, about 80 percent of which have iden-tified genetic mutations. About 50 to 60 percent of the tests identify genetic mutations that change the course of treatment.

FOR MORE INFORMATION, VISIT: cancer.dartmouth.edu

Cancer Center Testing Tailors Treatment to an Individual’s DNA

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G O I N G T H E E X T R A M I L E

Landmark D-H Study of Spine Surgery Effectiveness HonoredA landmark clinical trial at Dartmouth-Hitchcock investigat-ing the effectiveness of the most common spine surgeries has received the 2014 Orthopaedic Research and Education Foundation’s Clinical Research Award. Honorees included D-H CEO and President Dr. Jim Weinstein, principal investigator for the Spine Patient Outcomes Research Trial (SPORT), and his team of D-H physicians, researchers, patient coordinators and analysts who conducted the study. The award was announced at the 2014 Annual Meeting of the American Academy of Orthopaedic Surgeons in New Orleans. Dr. Weinstein has directed the $20,000 prize to the Department of Orthopaedics Research Fund at Dartmouth-Hitchcock.

SPORT, now in its 15th year, was funded by the National Institutes of Health to look for the first time at the efficacy of spine surgery over non-surgical treatment for the most common causes of low back pain: herniated disc, spinal stenosis and

spinal stenosis with forward slippage of the bone, known as de-generative spondylolisthesis. Low back pain is one of the most widely experienced health problems in the world. Eight out of 10 people will have back pain at some point in their lives. SPORT used a unique study design, with both randomized and observa-tional groups of patients, drawn from 13 multi-disciplinary spine centers across 11 states. A core component of the study was shared decision-making, allowing patients to make an informed choice about their treatment path. Study results showed that surgery was clearly effective, particularly in patients with spinal stenosis or spondylolisthesis. However, very importantly, it showed that the condition of non-operative patients did not worsen and those who were treated non-surgically had the equivalent recovery from their symptoms.

FOR MORE INFORMATION, VISIT: www.d-h.org/spine-surgery-study

Surprising Findings about Vaccine PromotionCurrent public health communications promoting the benefits of vaccines may not be effective and, in some cases, may actually strengthen parents’ opposition to vaccinating their children. That’s according to new research led by profes-sors at Dartmouth College and physi-cians at Dartmouth-Hitchcock. Attempts to increase concerns about communica-ble diseases or correct false claims about vaccines may be especially likely to be counterproductive, researchers found.

In a study of 1,800 parents with children aged 17 and younger, parents were assigned to a control group or one of four intervention groups. None

of the interventions increased pa-rental intent to vaccinate their child. Refuting claims of an MMR-autism

link successfully reduced mispercep-tions that vaccines cause autism, but nonetheless decreased intent to vacci-nate among parents who had the least favorable vaccine attitudes. In addi-tion, images of sick children increased expressed belief in a vaccine-autism link, and a dramatic narrative about an infant in danger increased self-re-ported belief in serious vaccine side effects. “These results suggest the need to carefully test vaccination messaging before making it public,” the researchers concluded.

FOR MORE INFORMATION, VISIT: http://bit.ly/vaccine-pub

The Jack and Dorothy Byrne Foundation Prouty ChallengeWhen more than 5,000 participants and 1,200 volunteers descend on Hanover, NH, on July 11-12 for the 2014

Prouty, they will cycle, walk, row or golf to-ward a goal of $3 million. The funds support cancer patients and cancer re-search at Dart-mouth-Hitch-cock Norris

Cotton Cancer Center. All year long, “virtual” participants around the world invent their own ways of chipping away at the goal—whether biking on a differ-ent day or climbing a mountain.

This year, participants have an addi-tional incentive, thanks to the generos-ity of The Jack & Dorothy Byrne Foun-dation, which has been a loyal sponsor of The Prouty for 10 years. If the Prouty community can raise $100,000 more than last year’s total ($2.78 million), the Foundation will donate an addition-al $100,000—on top of their gift of $100,000! No matter what you do or where you do it, participating in The Prouty will make a very big difference in the fight against cancer.

FOR MORE INFORMATION AND TO GET INVOLVED, VISIT: TheProuty.org

ProutyCelebrating the 32nd Annual

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Nancy and Jerry Mitchell

More than a TraditionGiving to Dartmouth-Hitchcock is a family tradition for Nancy Hayward Mitchell. Born at Mary Hitchcock Memorial Hospital, Nancy grew up on Rope Ferry Road in Hanover, near the original hospital. Her mother, Barbara Everett Hayward, was a hospital volunteer and trustee, and her father, Sidney C. Hayward, a Dartmouth College 1926 graduate, was an active supporter of the hospital and the community. When he died of cancer in 1965, the family made a generous gift to the nascent Norris Cotton Cancer Center.

But it is more than tradition that motivates Nancy and her husband, Jerry, to give to the Dartmouth-Hitchcock Annual Fund every year. “It’s the continuity of care that makes Dartmouth-Hitchcock such a big part of our lives,” says Jerry, a graduate of Dartmouth (’51) and Tuck School (’55). The couple receives primary and specialty care at Dartmouth-Hitchcock, as do their sons and grandchildren.

Gifts to the Dartmouth-Hitchcock Annual Fund provide flexible support that allows D-H to innovate and adapt quickly. When you give to the Annual Fund, you join donors like Nancy and Jerry who appreciate D-H’s commitment to serve the people and communities of our region, for generations to come.

FOR MORE INFORMATION, please call Amy Schrom at 603.653.0745 or toll free at 866.272.1955, or visit us on the web at www.Dartmouth-Hitchcock.org/DHAF

24

I M A G I N E

Imagine‚ a health systemthat focuses on health,not just health care.

Imagine‚ a health systemwhere care is based on value,not volume.

Imagine‚ a health systemgrounded in population based strategy,not market share.

Imagine‚ a health systemthat rewards quality, not quantity of procedures.

Imagine‚ a health system where patients,when well informed, receive only the carethey want and need.

Imagine, a sustainable health systemwith one goal:

To improve the lives of the peopleand communities we serve, for generations to come.

IN THISissueCOMPASSIONATE CARE

A $10-million gift will help launch a new center for

palliative and hospice care.

INNOVATION Novel device ends life-long seizures.

RESEARCH Participation in research

studies leads to life-changing results.

I M A G I N E

One Medical Center DriveLebanon, NH 03756603.650.5000

dartmouth-hitchcock.org

NON-PROFIT

U.S. POSTAGE

PAIDWHITE RIVER JCT. VT

PERMIT NO. 211

Imagine uses the power of storytelling to highlight Dartmouth-Hitchcock’s leadership role in providing the best in patient care, translational research, medical education and community service. The stories featured in this publication exemplify our mission to create a sustainable health system to support patients and families for generations to come.