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Four sisters with cancer get care

Roberta Aberle and her three sisters share an unfortunate bond: cancer.

Her two oldest sisters passed away from the disease. She and one sister are still fighting the disease. All four sisters were diagnosed in their 40s or 50s, and all have received treatment through UCHealth – Aberle at the University of Colorado Cancer Center on the CU Anschutz Medical Campus and her sisters at Poudre Valley Hospital in Fort Collins.

“Our family is definitely satisfied in the care we’ve received,” said Aberle, 53, who lives in Aurora, where she can easily access treatment at CU Anschutz, “and I’m 100 percent confident in the care I’m getting right in my backyard.”

A former quality and process improvement professional for UCHealth, she now applies her skills as an advocate and resource for people with cancer. She’s spreading the word about the treatment she received from CU physicians, and her own story of cancer, far and wide.

Years of diagnoses

“Sadness took root in our family in 2005,” Aberle said. That was the year the first of her sisters, Brenda, received her cancer diagnosis.

Roberta Alberle
Roberta Alberle, CU Cancer Center patient

Brenda passed away in 2008, and a year later, sister Carol was diagnosed. Both Aberle and her oldest sister Debby got cancer diagnoses in 2012. Debby passed away six months after her diagnosis, but Aberle has survived, outliving her original prognosis by half a decade.

Aberle remembers Leap Day 2012 vividly. That was the day she went in for a quick assessment of a minor pain in her side. Despite her significant risk factors of having multiple first-degree relatives diagnosed with cancer before age 50, she never imagined a life-altering diagnosis.

“I was feeling healthy and energetic and working my dream job,” she said. “Nothing could have been going better at that time.”

She came out with a diagnosis of inoperable primary peritoneal cancer, one of the most rare and lethal forms of cancer, and recommendations to begin arranging for palliative and end-of-life care.

“I was in utter disbelief,” she said. “I had just been thinking how ill everyone in my family is and that I’m not prepared to be the person who outlives my entire family, and now I had cancer, too.”

While the disease has devastated the family, it has also mystified them. All four sisters have had reproductive cancers, but none the exact same type, and each has had a different outcome. Aberle shares the same genetic marker for cancer susceptibility with one of her sisters, but the other two sisters did not have the marker. And on top of everything, in 2015 their father was diagnosed with melanoma and lymphoma.

“Cancer has blown our family to bits,” Aberle said, “but a bit falls to the floor and we pick it up and glue it back on. It’s created a bond that can’t be broken.

A powerful treatment

Despite her family’s devastation and her own grim prognosis, Aberle was determined to fight her cancer. For the next year and a half, she underwent chemotherapy and entered clinical drug trials. Then, she received hyperthermic intraperitoneal chemotherapy (HIPEC), a rare cancer treatment that combines chemotherapy and surgery in a single procedure. The CU School of Medicine Department of Surgery is one of very few care providers in the United States that offer HIPEC.

During Aberle’s HIPEC treatment in 2013, CU surgeons opened her abdomen, removed the visible cancer cells and then doused the remaining cells with heated chemotherapy drugs. This procedure is followed by standard intraperitoneal (IP) chemotherapy. Because both HIPEC and IP techniques deliver chemotherapy directly to cancer cells in the abdomen (unlike systemic chemotherapy delivery, which circulates throughout the body), they can destroy microscopic cancer cells and has helped some patients live decades longer.

But it’s not an easy procedure for patients.

“It’s an invasive procedure, and it was a very difficult and painful recovery,” Aberle said. “I had a port inserted into my abdomen and staples up the length of my belly. Now, I have adhesions and scar tissue that still cause pain sometimes.”

Since HIPEC, Aberle’s cancer has returned, but she still believes it was the right treatment for her.

“It bought me additional time and got me farther down the path to the next available treatment,” she said. “I have no doubt in my mind that, if I had not had access to CU surgeons, I would not have survived this long.”

Survival on her own terms

Now five years into her battle with cancer, Aberle is still determined to fight the disease, and she’s grateful that the care providers at CU Anschutz continue to empower her to do that.

“My survival is 95 percent connected to the care I’m getting from the University of Colorado,” she said. “No one has ever relinquished their hope in me or objected when I say I want to keep going. It is phenomenal to be working with these doctors.”

Two years ago, Aberle took disability leave in order to devote more time and energy to conquering her cancer and to doing the things that are most important to her: spending time with loved ones and sharing her experience to help others.

“I’m not fooling myself that I’m going to live to 103,” she said. “There’s going to be a point when I want to go to palliative care and hospice, but I want to make my sure that we’ve done everything possible first. I know I’m with the right team at the CU Cancer Center, because they share in that philosophy right along with me.”

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Dental students treat underserved in ACTS Program

When Matthew Iritani enters a dental office, it feels like home.

As a boy, Iritani spent hours watching his father, Mark Iritani, DDS, an orthodontist, work with patients. His mother, Patra Watana, DMD, a pediatric dentist, would come to his elementary school to teach the children about oral health.

“I always knew I wanted to grow up to be like mom and dad and go into the profession,” says Iritani, 25, a fourth-year student at the CU School of Dental Medicine.

Today, Iritani is closer to his dream. Through the CU School of Dental Medicine’s Advanced Clinical Training & Services (ACTS) program, he is able to have hands-on experience at the Salud Family Health Centers Sterling clinic.

Service to Colorado communities

Initiated in 1986, the ACTS program was one of the first programs of its kind and has become a national model for service learning programs designed to integrate students into underserved communities. ACTS provides hands-on experiences for fourth-year dental students as they practice in clinics around the state of Colorado. The number of days spent in the community are among the highest in the nation, giving our students the expertise, confidence and skills to immediately improve lives once they graduate.

CU dental student Matthew Iritani and preceptor Dr. Petros Yoon
Fourth-year dental student Matthew Iritani is pictured with his ACTS preceptor Petros Yoon, DDS, outside the Salud Family Health Centers Sterling clinic.

This year, each of the 76 fourth-year dental students will rotate through four to five of the 35 ACTS partner sites, a mixture of urban and rural statewide. More than 70 community dentists, many (46 percent) of whom are CU alumni and also participated in the ACTS program, have faculty appointments as preceptors and oversee the students during their ACTS rotation.

“All of the patients the students see are underserved in some way and have barriers accessing dental care,” says Tamara Tobey, DDS, Director of the ACTS program and an Associate Professor/Clinical Track.

Students appreciate the challenge, she says.

“Our students say it’s one of the best experiences during dental school, it’s valuable for their training and treating these patients is very worthwhile,” says Tobey, adding that prospective dental students often talk about ACTS as a reason they are interested in attending the CU School of Dental Medicine.

Tobey, a 1992 CU School of Dental Medicine graduate, was a student in the program and also a preceptor for more than 20 years.

“It’s always been our goal to expose students to community health centers and diverse populations,” she says. “Our students realize they really are making a difference in those patients’ lives and they might be drawn to working in community health practice as a career. We want to make sure they’re exposed to all options so they can make choices that are meaningful for them.”

From student to teacher

Petros Yoon, DDS, Dental Director at the Salud Family Health Centers Sterling clinic, graduated from the CU School of Dental Medicine in 2015. He now shares his knowledge and experience as a preceptor.

“As an ACTS preceptor, I want to guide the students and help advance their clinical skills and give them practical, real-world experience,” Yoon says. Each student assigned to the Salud Sterling clinic works with Yoon for four weeks, with a two-week break in between so they can go back to the dental school to care for their patients there and meet other school requirements.

Sterling is a small town in comparison to Denver; it has a population of about 14,000 people. It’s a hub for area residents to come for medical and dental services. Some patients drive 60 miles for their appointments.

“We have large families who come to our clinic and we make every effort to see the whole family if we can,” he says. “Sterling is a very tight-knit community and we are proud to serve and be a part of their families.”

Empathic skills are also important for students, who need to learn how to communicate with diverse patient populations, from children to seniors. Time management while providing quality of care is also a critical skill for students to learn. In the dental school setting, because of other variables such as classes, a student may only see two patients a day, one in the morning and one in the afternoon.

In the Sterling clinic, students may see four to five patients a day. Yoon oversees the students’ work, but gives them the opportunity to practice general dentistry, including exams, fillings, oral surgery and more.

“Here, we help them learn how to think critically on the spot, supported by evidence-based research and their clinical training,” Yoon says. “These are skills you really can’t practice unless you’re in a real-life situation.”

For Yoon, providing support to students comes naturally. As a CU dental student, he rotated through the Salud Fort Lupton clinic and understands the importance of the ACTS program. Even if dental students want to take another path – orthodontics, for example – the experience they get in a community health center will be rewarding.

Many opportunities to practice in community

“Petros is the best – he was a fourth year when I was a first year and would help me even then,” Iritani says. “One of the big reasons I wanted to go to Sterling as a rotation was because of him.”

Iritani also has worked in the dental clinic at Denver Health’s Westside Family Health Center and will be assigned to the Worthmore Dental Clinic in Aurora, caring for refugees. He’ll have two more affiliations in the spring.

Iritani is applying for CU’s Graduate Orthodontics Program and hopes to join his dad’s practice. His dad, Mark Iritani, is a 1985 graduate of the CU School of Dental Medicine and also practiced in an underserved part of Colorado as a young dentist.

“ACTS is valuable because it exposes you to what it would be like to work in both public health and private practice,” Matthew Iritani says. “I think the opportunity to see patients in different situations has been beneficial – especially since I went into dentistry because I want to help people.”

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Hard Call podcast explores tough ethical decisions in health care

Some of the toughest ethical challenges in life play out in health care. The Hard Call podcast series, launched over the summer by the CU Center for Bioethics and Humanities, explores heart-wrenching choices confronting real patients, families and care teams. And in a novel, creative twist for a podcast, it also asks listeners to vote on what they would do if they were facing the same decisions.

Hard Call: Derailed” was the first story launched. It tracks a patient with emerging bipolar disorder through five episodes. The story was funded by the Colorado Health Foundation and the Community First Foundation, and it has been championed by mental health organizations such as the National Behavioral Health Innovation Center. Derailed quickly garnered listeners from across the US and in Australia, Canada, England and Ireland.

Wynia Matthew, MD
Matthew Wynia, MD, MPH, director of the CU Center for Bioethics and Humanities, collaborates with Elaine Appleton Grant, a journalist and radio producer, on the new podcast series, “Hard Call.”

The second story is “Hard Call: The Electronic Heart.” This four-part podcast series follows a patient, nicknamed “Max” to protect his privacy, through a set of critical decisions about a very risky and expensive treatment toward the end of life.

Hard Call collaborators Matthew Wynia, MD, MPH, director of the CU Center for Bioethics and Humanities at the Anschutz Medical Campus, and Elaine Appleton Grant, an experienced journalist and public radio producer, say the two storylines have brought different listeners to the program. “The first Hard Call story, about a patient with bipolar disorder, has drawn a large number of listeners particularly interested in mental wellness and the care of patients with mental illness,” Grant said. “The second patient’s story is of interest to anyone who’s lived through difficult decisions around end of life care, or people interested in heart disease and how it’s being treated these days.”

Listen to a Colorado Public Radio interview with Wynia about the ‘Hard Call’ series and the story about a Denver man suffering from bipolar disorder here.

Each Hard Call episode ends with a difficult choice facing one person in the story and the provocative question, “What would you do?” Listeners are asked to vote on the Hard Call website. They can also see how others voted and join the discussion online.

Hard Call is a collaboration between creative minds in health care, radio and theater. Episodes are available in iTunes, Google Play, other podcast platforms and on the web.  It is made possible by the CU Center for Bioethics and Humanities, with support from the Colorado Health Foundation and the Community First Foundation.

The CU Center for Bioethics and Humanities, located on the University of Colorado Anschutz Medical Campus, engages today’s and tomorrow’s health professionals and the community in substantive, interdisciplinary dialogue about ethical issues confronting patients, professionals and society.

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New arrival bolsters Cardiothoracic Surgery team

The recent addition of Jay Pal, MD, PhD, to the Division of Cardiothoracic Surgery at the University of Colorado School of Medicine both maintains and deepens its expertise in treating heart failure and other serious cardiac problems. It’s also gained a guy who would rather focus on teamwork than individual achievement.

Pal joined the team June 19 after nearly four years with the University of Washington in Seattle, where he honed his skills in heart transplant surgery and implantation of left ventricular assist devices (LVADs) and other mechanical tools that support circulation in heart failure patients. He’s successfully retrieved and transplanted donor organs from remote areas in Alaska, pushing the boundaries of time for safe transplant. He’s developed expertise in less invasive techniques for LVAD surgery. For patients with acute cardiac problems, Pal has worked extensively with methods of short-term circulatory support, such as extracorporeal membrane oxygenation (ECMO).

Joe Cleveland
Pal takes over as surgical director of the Mechanical Circulatory Support Program from Joseph Cleveland, MD, who remains active with the CT team as a surgeon and research leader.

These and other skills strengthen not only the cardiothoracic (CT) surgery team but also the Heart Failure Program at CU and UCHealth University of Colorado Hospital. They also contributed to Pal’s selection as surgical director of CU’s Mechanical Circulatory Support Program. He takes over from Joseph Cleveland, MD, who has headed the program since its inception in 2001.

Don’t expect Pal to focus on these accomplishments when he talks about what motivates him, though.

“As a surgeon, caring for patients with heart failure requires good collaboration with management by my cardiology colleagues,” Pal said. “Physicians tend to work in silos, but heart failure requires multispecialty care by skilled specialists and nurses in the ORs, ICUs and clinics. That reflects my personality. I have something to learn from everyone. It’s foolish to think I can do anything alone.”

New shoes

Pal’s arrival fills a vacancy created about a year and a half ago with the departure of Ashok Babu, MD, for Saint Thomas Heart in Nashville. With last year’s addition of Muhammad Aftab, MD, the CT surgery team is positioned to rebuild its annual LVAD volume to its past peak of 50 or so, Cleveland said. It performed 36 such procedures last year.

Amrut Ambardekar
Cardiac Transplantation Program Director Amrut Ambardekar, MD, welcomes the experience and expertise that Pal brings to CU and University of Colorado Hospital.

“The number of cardiac surgeries we do has been increasing generally,” added Amrut Ambardekar, MD, director of CU’s Cardiac Transplantation Program. “Jay not only fills a void in staffing but will allow us to grow to the next level.”

With Pal taking on the surgical director’s administrative duties, Cleveland will also have more time to pursue his research interests while maintaining his surgical schedule. He’s principal investigator for the clinical trial of the HeartMate 3 LVAD, which in late August received FDA approval as a short-term LVAD for patients awaiting heart transplant. Cleveland said he also plans to increase the CT surgery team’s involvement with CU’s Structural Heart Program, which offers minimally invasive procedures that are increasingly in demand, such as transcatheter aortic valve replacement (TAVR).

Cleveland said he’s confident that he can take on these new challenges, thanks to Pal’s mix of experience in areas both familiar and new to the CU program.

“We wanted someone who is mid-career who can, at the same time, bring outside ideas and help to make us better,” Cleveland said. “Jay also impressed us as thoughtful and collaborative, someone who would be a good colleague.”

Extending ECMO

The ECMO program promises to be another beneficiary. The technique involves providing mechanical circulation support for patients with acute heart and/or lung damage from heart attacks, arrhythmias, or viral infections, for example. The machine boosts circulation and breathing, giving injured organs a chance to rest and heal, sometimes as a bridge to an LVAD or transplant.

“There is an urgent need in Denver and beyond for care for people who get very sick, very quickly,” Pal said. “These patients would otherwise die. With aggressive care, we can salvage their organs and their lives.”

Ambardekar said the number of ECMO cases grew from 40 in fiscal year 2016 (which ended June 30, 2016) to 50 in fiscal year 2017. The program also earned the ELSO Gold Level Award of Excellence for excellence in patient care, training, education and other criteria for measuring and evaluating organizations that use ECMO to treat patients.

Longer reach

Pal also promises to help the Transplant Program extend its reach in retrieving donor hearts for patients on its waiting list. The traditional “upper limit” for bringing a heart from the field to the surgical table is four hours, Pal said. But he and his colleagues at the University of Washington often pushed beyond that boundary, sometimes flying from Seattle to deep into the Alaskan interior or far down the coast to Southern California to get and bring back a lifesaving heart. They regularly kept the organs viable for six hours and more, he said.

One key to the success was a new technique that keeps the donor heart perfused with warm blood during transport. Even more important, Pal said, was donor selection and timing. “It’s important to have healthy young donors,” he noted. “The surgery must also then be expeditious. The distance should be a minor factor in our decision making.”

His experience should help the CU team expand the area it travels for donor organs, Ambardekar said. “We’ve generally not gone more than 1,000 miles, but Jay is used to traveling longer distances,” he said. “For our patients waiting for a transplant, the farther we can go for organs, the better.”

That capability also promises to be important because the United Network for Organ Sharing (UNOS) is preparing to implement changes to its adult heart allocation system. One of them will expand the geographic area available to institutions to procure hearts for its sickest patients.

As Pal put it, “The number of people with heart failure is growing, but the donor population is still relatively fixed. That means our ability to get hearts to those who will benefit the most is paramount.”

Cutting down on cutting open

Meanwhile, Pal also has experience with surgical alternatives to opening the sternum for implantation of LVADs. Instead, surgeons make a much smaller incision in the chest wall. The idea isn’t about saving time – in fact, the procedure is more difficult and takes longer than opening the chest, Pal said. It’s aimed at sparing patients who get LVADs as a bridge to heart transplant a second sternotomy when they receive their new hearts, he said.

Cleveland said he’s done one of the less-invasive procedures, but having it more available as an option for patients is important for the CT surgery team as a whole. “We want to bring in new techniques as we move forward,” he said.

A considerable number of patients at UCH stand to benefit from having the choice. Half of the patients who received heart transplants in 2016 were those who received LVADs as a bridge, Ambardekar noted.

“Ultimately the transplants for those patients could be better, safer, faster and involve less bleeding” if they have a minimally invasive procedure to implant their LVADs, he said.

In touch with outreach

The ultimate goal all these procedures is to help patients live better lives, and that requires educating and staying connected, not only with them, but with their providers. University of Washington is in a bigger and more competitive market than Denver – at least in terms of the availability of tertiary and quaternary care – but like their Denver colleagues, Seattle specialists serve patients from a large swath of thinly populated rural communities in the eastern portion of Washington. Pal is familiar with the importance of reaching out to community cardiologists to help them care for their heart failure patients and keep them close to home as much as possible.

Pal plans to join Cleveland, Ambardekar and others on trips to places like Greeley and Cheyenne, Wyoming to meet with primary care providers and cardiologists. They offer tips on treating heart failure and explain the basics of operating, monitoring and maintaining LVADs. Cleveland said he and his team have also hosted groups of community cardiologists at UCH to observe how patients are selected to receive LVADs and transplants. Community providers with questions can also call in to a 24-hour help line staffed by the hospital’s Mechanical Circulatory Support Program coordinators.

“It’s two-way communication,” Cleveland said. “Patients know we are not here to supplant their community providers. We’re here to help manage complex medical situations.”

“My goal is to help patients not just live longer, but to go back to doing the things they want,” Pal said. “It’s not about our program getting all the patients. It’s about serving as a resource for patients and their providers.”

Still a relative newcomer to the Rocky Mountain region, Pal said he looks forward to skiing, camping and hiking with twin daughters Aliana and Isabella (not quite 3 years old) and wife, Angela. While he points to the similarities between the clinical programs in Washington and Colorado, he’s looking forward to experiencing one difference as autumn in Seattle and Denver approaches.

“The sunshine here is quite nice,” he said.

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How patients and doctors prepare for end of life care for blood cancer patients

Clay Smith, MD, chief of the Division of Hematology at CU, enjoying a day in the mountains. Smith completed the advance care planning process three years ago to lessen the burden of decision-making on his family and encourages his patients to do the same.
Clay Smith, MD, chief of the Division of Hematology at CU, enjoying a day in the mountains. Smith completed the advance care planning process three years ago to lessen the burden of decision-making on his family and encourages his patients to do the same.

Clay Smith faces death many days.

Smith is associate chief of the Division of Hematology at the University of Colorado School of Medicine and director of the General Hematology, Blood Cancers and BMT Programs at UCHealth University of Colorado Hospital. He and his colleagues regularly treat and manage the care of patients with blood cancers such as leukemia, multiple myeloma and lymphomas.

While many survive through stem cell transplants, chemotherapy and radiation, the treatments can be painful, debilitating and isolating. Many don’t survive. The Leukemia and Lymphoma Society predicts that more than 58,000 people in the United States will die from blood cancers or complications from them this year.

Clay Smith has seen his patients die. Many of them struggled, along with their families and loved ones, in their final days to accept and come to terms with the prospect of death.

Until recently, however, Smith admits he didn’t directly face the reality of death himself.

“I’ve been in the field for 33 years,” he said. “In the early parts of it, I focused on medicine and science. I didn’t think about my own mortality.”

New perspective

That changed three years ago. Smith, now 58, began to consider the difficult moments he witnessed as a physician: patients and loved ones grappling with agonizing decisions, such as whether to continue treatments in the face of incapacitating physical decline or whether to remove a ventilator.

“I didn’t want my kids to struggle with that,” said Smith, who has two sons. “It was my responsibility as a parent to be sure my sons were never left with making those decisions.”

With that, Smith set up a living will, durable power of attorney (DPOA) and an advance-care directive to ensure that his wishes for end-of-life care were clearly stated. Reduced to the simplest terms, Smith said he will choose quality of life over quantity and reject extraordinary lifesaving measures.

No bright lines

Smith’s experience exposes one of medicine’s knottiest issues – and one that is felt especially keenly in the blood cancer field, where many patients teeter on the edge of recovery and decline, sometimes for years. Too often, Smith said, providers, patients and families view end-of-life discussions and advance care planning as code words for abandoning hope that disease can be conquered.

“When we talk about ‘getting our affairs in order,’ it’s sometimes mixed up with the idea that we are no longer devoting our energy to curing disease or prolonging life,” Smith said. “We can do both.”

The idea behind advance-care planning, he said, is that people should make decisions about how they wish to spend their final days before they become too ill to do so and the emotional turmoil that frequently accompanies dying engulfs their loved ones.

That’s just a matter of personal protection, Smith noted. As he put it, “Nobody buys car insurance thinking they are going to wreck.”

Jeanie Youngwerth, MD, Director of the Palliative Care Service at UCH, said Smith is a “great role model and advocate for advance-care planning.  He speaks openly, guiding patients in having the gift of conversation with families about their values and wishes.

Families often struggle with important decision making because advance-care planning conversations never happened, Youngwerth added. “It’s important to help patients and families prepare before times of crisis and make a plan that is based on their values.”

The provider dilemma

But providers aren’t exempt. They too grope for the best ways to meld lifesaving clinical care with advance-care planning. That is particularly true for those treating blood diseases, said Tanisha Joshi, PhD, a counseling psychologist and assistant professor of Medicine at CU. Joshi is “embedded” with Smith’s team and meets regularly with them, not only to discuss their patients’ needs, but also how their patients’ struggles affect them.

The challenges are twofold, Joshi said. First, the course of treatment for blood cancers can be very unpredictable – in general, more so than for solid tumors. Patients can hover at the edge of death, then recover. Others may show encouraging signs, then quickly go downhill. In addition, patients very often spend long stints in the hospital, particularly after stem cell transplants, which leave them immunocompromised and therefore at very high risk of infection. If the donor cells come from another individual, patients may also fall prey to graft-versus-host disease, wherein the body attacks what it perceives as foreign bodies.

Yet at the same time, rapid medical advances, such as immunotherapy, continue to offer hope and may spur both patients and providers to pursue care aggressively.

These uncertainties raise the risk of compassion fatigue and burnout for providers, Joshi said. They may also create conflicts among them in discussions of care plans.

“Nurses, psychologists, social workers and physicians may see cases in different ways,” Joshi said. Some may see aggressive, lifesaving care as fulfilling a duty to do everything possible on behalf of the patient; others may see that as futile and instead advocate for easing the patient’s suffering and improving quality of life in the final days.

“It places an emotional load on the team,” Joshi said.

Delicate balance

Elissa Kolva, PhD (left) and Tanisha Joshi, PhD, lead a CU study that aims to examine how end-of-life care is delivered at UCHealth University of Colorado Hospital and the effect that difficult blood disease cases have on providers.
Elissa Kolva, PhD (left) and Tanisha Joshi, PhD, lead a CU study that aims to examine how end-of-life care is delivered at UCHealth University of Colorado Hospital and the effect that difficult blood disease cases have on providers.

The volatile mix led Joshi and Elissa Kolva, PhD, assistant professor of Medical Oncology at CU, to launch a study of  patients at UCH. Kolva will be analyzing the type of care provided to patients, including the site of death; end-of-life counseling provided, if any; presence of advance care and do-not-resuscitate directives; numbers of emergency department visits and hospital readmissions; access to primary care, and more.

Joshi is conducting 60- to 90-minute interviews with providers, including physicians, advanced-care practitioners, inpatient and outpatient nurses, social workers, psychologists and survivorship coordinators. She will probe their perceptions of the care they provide and search for patterns in their responses. What were the challenges? How did it impact them personally? How do they take care of themselves emotionally? Did they have enough training to deal with difficult situations? What are the patient stories that stand out to them?

The work is ongoing and data analysis will follow, but the ultimate aim is to get a clearer picture of how the team is providing end-of-life care and the effect it is having on them. Joshi calls it “bringing torches to a dark tunnel. We want to understand what is the landscape.” The study’s title speaks to answering an even more fundamental question: “When Is Enough Enough?”

Kolva notes that research supports that providers treating blood disorders have trouble answering that question. In one survey for example, 55.9 percent of hematological oncologists who participated said they believed end-of-life discussions began “too late.”

“Our project builds from that finding,” Kolva said. “We want to provide a level of comfort for hematologic oncologists to have end-of-life conversations.”

Entering those conversations can be very difficult for providers, Kolva acknowledged. The power of medical technology, in the form of a new treatment or trial or another transplant, can make the prospects for a patient’s recovery tantalizingly close. “Most providers have seen a miraculous case,” Kolva said.

But providers must guard against allowing their commitment to treatment override patients’ values, she added. Jehovah’s Witnesses, for example, will not submit to blood transfusions. Use of stem cells collected from discarded umbilical cords may conflict with some individuals’ moral standards. Others may believe faith will deliver them from disease. These and other factors can influence end-of-life discussions, even as they challenge providers’ own beliefs, Kolva said.

“We love to pretend we know how people will feel at the end of life,” she said. “None of us know. We have to continue to check our feelings as providers when we feel we are pulling in one direction.”

For his part, Smith believes Joshi’s and Kolva’s work will lead other providers to think about the unthinkable, just as he did three years ago.

“This work will open conversations about the practice of advance-care planning and prompt providers to think more broadly about discussing end-of-life care,” he said.

 

 

 

 

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An Epic Sprint to aid clinics

In February 2011, the University of Colorado Anschutz Medical Campus took a major step toward fundamentally changing its health care delivery. The change would eventually affect every provider, researcher and staff member on the campus and beyond – and the reverberations continue today.

The revolution began with a handful of ambulatory clinics at University of Colorado Hospital that began using the Epic electronic health record (EHR). The aim: shelve dozens of discrete applications and towering paper stacks in favor of a single system that would allow all providers to view a patient’s entire medical record online.

Sprint Team Conference Room
Sprint team at work near the end of its four weeks of work in the OB/Gyn Clinic.

The Epic implementation included a massive training effort and a phased, multi-year rollout that ensconced the EHR on the Anschutz Medical Campus and at UCH satellite clinics. With the formation and growth of UCHealth, Epic now links hospitals and clinics up and down the Front Range and beyond.

But the challenges of ­working efficiently and effectively with an EHR remain. Memorizing sequences of clicks in record charting can be frustrating for providers focused on patient care. Patients now have an electronic conduit to their providers through My Health Connection; figuring out how best to route and respond to questions can be challenging and time-consuming for clinics. The basic Epic framework requires ongoing customization to meet the needs of dozens of specialists and subspecialists – most them with the CU School of Medicine – and their UCHealth patients.

These challenges help to explain why Epic training, in the form of tip sheets, webinars, emails, and other support, has never ended. The past year has produced a new twist: a dedicated team that gives clinic providers and staff focused, face-to-face help with making the most of the EHR.

On the run

The Sprint team, as it’s called, consists of Epic analysts, trainers, and a project manager, as well as a nurse and physicians who combine clinical and information technology skills. Together they help to define the clinical and operational needs of providers and staff and collaborate with IT, clinical and other experts to meet them. Their guiding principle: people learn best when they have face-to-face help from people who are interested in listening to them, answering their questions and solving their problems.

“It’s a collaborative effort,” said Christine Gonzalez, the Sprint team’s project manager. “When you need to make rapid changes, nothing beats live help. Providers and staff feel safe with working one-on-one.”

The Sprint team is a response to a problem that is both local and national, said Amber Sieja, MD, a physician informaticist for the Anschutz Medical Campus and an internist with the CU School of Medicine. Maintaining paper medical records might have been cumbersome, but for many providers meeting the demands of an electronic system has made practicing medicine more difficult than ever.

“The problem we face is that providers are burned out with their clinical practice,” Sieja said. She noted that in national surveys, providers routinely identify EHRs as a major contributor to that problem. “Locally, our providers have told us the EHR takes up too much time,” she added. “That’s our problem to solve.”

That’s a tall order, however. Epic is a dynamic tool that receives annual upgrades as well as ongoing customized changes for specific clinical areas. How to communicate the changes to the couple of thousand providers with the School of Medicine and UCHealth Medical Group? The Epic team has tried spreading the word with regularly scheduled Skype videos, newsletters, tip sheets, and open training sessions. It’s all fallen well short of reaching anywhere near most providers, Sieja said.

“The message we got is ‘we want somebody in our clinics,’” she said.

Face time

Sprint Team
Members of the Epic Sprint team outside the OB/Gyn Clinic at University of Colorado Hospital. Left to right, back row: Amber Sieja, MD – physician informaticist; Todd Andrews – lead analyst; Dan Golightly – analyst; Rob Lewis – analyst; Dan Kroening – trainer; Diane Pruitt, RN – clinical informaticist. Left to right, front row: Scott Carpenter – lead trainer; Barbara Noble – trainer; Christine Gonzalez – project manager; Megan Cortez – analyst; Tally Talyai, PA – physician informaticist.

That demand spurred the creation of the first “Sprint” in 2016. Sieja, fellow physician informaticist Katie Markley, MD, and UCHealth Chief Medical Information Officer CT Lin, MD, put together a team that parachuted into the Endocrinology Clinic at UCH for a two-week, hands-on helping stint. Their work drew praise from both providers and staff for helping to decrease burnout, reduce charting time and improve patient care.

The Endocrinology pilot wasn’t perfect, Sieja said. Most importantly, it showed that future Sprint projects would need more lead time to prioritize clinic needs, schedule rooms and meeting times, identify potential new EHR builds, and so on. They settled on 90 days of preparation, said Sieja, who used that time to develop a curriculum for the Neurology Clinic at UCH.

The Sprint project in Neuro, which began in January 2017, represented a major challenge. Its nearly 100 providers handled more than 26,000 patient visits in 2016. It also includes eight subspecialties, all with specific patient care needs. A major part of the work involved meeting with “clinical content leaders” to identify priorities for new Epic builds, such as flowsheets to help ensure that patients with neuromuscular diseases like ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease) and other complex neurologic conditions receive evidence-based standards of care.

“These are tools that allow us to track patients over time,” said Laura Strom, MD, an epilepsy specialist who helped to lead the Sprint effort in the Neurology Clinic. “They are invaluable in Epic.” The flowsheets, however, had to be built from scratch, a time-consuming process, she added. All told, seven subspecialties requested and received customized builds as part of the Sprint project.

The Sprint team spent a pair of two-week stints, separated by a one-week break, in the Neurology Clinic, wrapping up the work in February. Much of the effort focused on helping providers use Epic more efficiently for their basic work: pulling needed information from patient charts; ordering labs, imaging studies and other tests; responding to patient questions and referral requests; and preparing to address patients’ chief complaints in advance of the visit. Providers learned to use templates, preference lists, keywords and phrases, and other shortcuts to reduce the number of clicks – and therefore time – they spend at the keyboard, Sieja said.

Making work simpler

The key is to reduce frustration with practical help, said Gonzalez, who handles the planning, coordination and other logistical details of each Sprint mission.

“I feel we come in to take a good tool [Epic] that we already have and make it better,” Gonzalez said. Many providers on the Anschutz Medical Campus, she noted, have not had additional guidance in using Epic since the first go-live six-plus years ago.

“Who doesn’t need more training?” Gonzalez asked. She cited the example of a UCHealth Colorado Springs provider who was surprised when she found how much time she could save by using Epic’s Dragon voice-recognition software for her progress notes instead of typing. The shortcut helped her get home to her family earlier.

“She told us the change helped her to become a better mother,” Gonzalez said.

Strom said more than 90 percent of the Neurology Clinic’s providers received the Sprint training in some form. The attention generally helped to increase individuals’ confidence in using shortcuts in Epic to trim their documentation time, she said. One example: “dictionaries” Epic uses to translate shorthand for frequently used terms into the real word.

“People applauded the one-on-one teaching,” Strom said. Some critics of Epic who had viewed it as nothing more than a “billing tool,” she added, changed their minds after the Sprint initiative.

“They saw that Epic could be used to take better care of patients and to help to improve the growth of understanding about their disease,” Strom said. A post-intervention survey showed that both providers and staff viewed Epic in a more favorable light than they had before the Sprint team worked with them. For example, the percentages of those who agreed that the clinic improved its use of the EHR and the patient care it provided increased significantly in both groups.

The Sprint team followed the Neurology Clinic assignment with a regular schedule of visits to UCHealth facilities in Northern and Southern Colorado as well as the Anschutz Medical Campus. For example, they worked with the respective Hematology/Oncology practices at UCHealth’s Memorial Hospital in Colorado Springs and Poudre Valley Hospital in Fort Collins. They wrapped up a four-week stint with the OB/Gyn Clinic at UCH – another with close to 100 providers and several subspecialties – on July 21. They are booked on a two-week on, one-week off schedule through June 2018 (with some extra time off for the next Epic upgrade this October), Gonzalez said.

Important challenges remain, including how to ensure that the positive changes in clinics visited by Sprint continue. Sieja points to the importance of super users and clinical content leaders to “carry the improvements forward.” Sprint success also brings to light questions of “scalability,” said Chief Medical Information Officer Lin, noting that it could be increasingly difficult for a single Sprint team to meet clinic demand. For now, the team splits to work with clinics with fewer providers and subspecialists.

“We need people to bring along others at the basic level,” Strom agreed. “But the sense of what is possible with Epic is now much more keen. More people are saying, ‘We really can use this tool.’”

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The hero and the dental student: A tale of friendship

Willie Peterson is an Army veteran who has lived through his share of hard times. He has learned to cherish small blessings and pay attention to positive role models. One such role model sat across from him over a string of dental appointments which saw Willie’s once-shy smile transform into a mouth of pearly whites.

That person is Bill Berguin, a recent graduate of the CU School of Dental Medicine. Bill has been the architect of Willie’s new dentures and a close witness to the inspired and ever-upward trajectory of Willie’s life.

Willie and Bill at the Heroes Clinic at CU Anschutz
Army veteran Willie Peterson, left, proudly shows off his new teeth, which were created by Bill Berguin, his Heroes Clinic caregiver.

At a recent dental appointment, Willie was all smiles. Besides gaining his stellar teeth, the soldier was excited to fill in Bill about yet another achievement. “Check out my credit score,” he said with a beaming grin. “Also, I’ve got a job. I haven’t had a good job in a long time.”

‘He’s a good man’

Willie met Bill about a year ago when he became the first Pathway 1 patient in the dental school’s Heroes Clinic, a Delta Dental of Colorado-sponsored program which provides free and discounted dental care to military veterans. Pathway 1 provides dental care to veterans served through the Bill Daniels Veteran Services Center, which helps link homeless veterans to jobs.

They come from different backgrounds – Willie is from Wisconsin and Bill hails from the Western Slope – but they bonded during Willie’s many visits to the dental chair. “I got to sit and talk with him about life – where he’s from and what he’s doing and how he was trying to go back to school,” Bill said. A few good-natured jabs also found their way into the conversations. Bill likes to razz Willie about being a Green Bay Packers fan, while Willie dishes it right back on the Broncos.

Kidding aside, Willie once confided to Bill, who was in the fourth year of dental school, that he had planted in the soldier’s mind the notion of returning to school. “I thought that was really neat,” Bill said. “I told him he might want to see a graduation, so he’s going to come to my graduation.”

Sure enough, early last Friday morning, Willie boarded a bus near his Denver apartment and rode to the CU Anschutz Medical Campus to attend Bill’s graduation. He hadn’t been to a graduation since his own from high school some 40 years ago. When Bill said he was looking forward to having his new friend meet his family, Willie smiled, extended a hand for a firm shake and said, “I want Bill to come to my graduation, too.”

Willie Peterson and Bill Berguin at CU Dental School graduation
Willie Peterson shakes hands with Bill Berguin at Bill’s graduation on May 26.

Willie has his sights on becoming a technician in heating, ventilation and air conditioning (HVAC). He recently enrolled in the HVAC program at Emily Griffith Technical College in Denver.

Asked what he found inspiring about Bill, Willie said, “I just think he’s a perfectionist. He’s a good man.” 

Putting his life back together

Willie performed a seven-year hitch in the Army, serving in Korea and Japan and, stateside, in Florida and California. He was discharged in 1983, but soon fell into drug abuse and homelessness. “The whole thing,” he said, shaking his head, “just a few years after I got out of the service.”

Gradually, he began to pay heed to the few positive influences in his life. He reconnected with a Lutheran pastor he’d first met during a spell of living in California. When the pastor moved to Wisconsin, Willie followed and began seeking the clergyman’s counsel.

“He helped me kick drugs,” Willie said. “I needed that – I really did – because I was heading down a bad street.”

Things turned more for the better when he sought the help of his mother. “I was just tired of how I was living, so I had to make a change. I started to hang out with my mom and going to church, and then I got the hang of it.”

About a year ago Willie made the move to Colorado, where his sister lives. Still, life was a struggle, as the veteran didn’t have a place to call his own. The Bill Daniels Veteran Services Center connected him to the Samaritan House, a transitional housing facility. Willie was riding the 16th Street Mall shuttle one day when he bumped into Heidi Tyrrell, RDH, assistant director and clinical instructor in the dental school’s Heroes Clinic.

“He was grinning ear to ear and wearing a suit that was a little too big for him,” said Tyrrell, who also noticed that Willie was in need of some dental work. “He ‘ma’amed’ me and I said, ‘Are you a veteran?’ He said yes and I handed him my card.”

Willie, Bill and Heidi at CU School of Dental Medicine graduation
At the CU School of Dental Medicine’s graduation on May 26 are, from left, Army veteran Willie Peterson, graduate Bill Berguin and Heidi Tyrrell, assistant director and clinical instructor in the dental school’s Heroes Clinic.

That’s how Willie ended up in a dental chair with Bill as his care provider. Growing up in Grand Junction, where he saw many friends join the military, Bill has a built-in respect for veterans and he felt honored to care for Willie. “I treated him the way I treat all my patients,” Bill said. “He’s a really good guy, so it was easy.”

With each visit, Willie’s smile brightened and his sense of accomplishment soared. “One less thing to do,” he said with another big grin.

‘Cool to feel like I was helping’

Willie enjoys his job as a housekeeper at the VA Medical Center in Denver. Besides his recent enrollment in technical college, he now has a permanent home, a new girlfriend and a burgeoning sense of security.

“I’m tired of living poor – I don’t want to keep living like that,” said Willie, sporting a U.S. Army hat and the ever-present Packers lanyard. “I feel good about myself now.”

Bill likes the idea of giving back to veterans and said that of all his clinical rotations during dental school, the Heroes Clinic became his favorite. Willie was even more special in that he is the clinic’s first Pathways 1 patient. “Folks in that population are a little more at risk,” Bill said, “so it was cool to feel like I was really helping somebody out.”

Bill will return to Grand Junction with a goal of eventually having his own practice. His father is a dentist, and he plans to join his dad’s practice to learn the ropes of daily dentistry while paying off student loans.

Bill said his rotation in the Heroes Clinic, especially his time with Willie, will remind him of the very reason he aspired to become a dentist – to help people. “I want to do community service and whatever I can to volunteer and give my time, so I can provide care for people who can’t afford it,” he said. “It’s something I want to continue and not lose sight of.”

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Palliative Care includes Creative Arts Therapy

 

A patient in the Natalie Kutner Palliative Care Creative Arts Therapy Program plays the guitar
A patient in the Natalie Kutner Palliative Care Creative Arts Therapy Program plays the guitar

After being diagnosed with cancer of the intestines in November 2016, Nick Gonzales was in and out of the University of Colorado Hospital (UCH) over a period of several months. By the time he began receiving palliative care, Nick and his wife Carol were stressed by multiple hospital visits and struggling to process his declining health.

They found relief through supplies you might not expect to find at a hospital—colored pencils and a camera.

Learn More

For information about the Creative Arts Therapy Program, contact Jean Kutner: Jean.Kutner@ucdenver.edu

To learn about ways to give, contact Cheryl Balchunas: 303-724-6871, Cheryl.Balchunas@ucdenver.edu

The Gonzales family participated in the Natalie Kutner Palliative Care Creative Arts Therapy Program, one of UCH’s newest approaches to care for people with serious illness. According to Program Director of the UCH Palliative Care Service Jeanie Youngwerth, MD, the program combines “the creative arts with therapy to make a patient feel like a person again.”

Nick and Carol used coloring and photographs taken by their art therapist to discover how creating art enables a patient to express deep and difficult feelings. “Poetry, art and music—they help to get your feelings out,” Nick Gonzales said. “It’s motivating, and I expressed more when I got involved with the program.”

His wife Carol agreed. “For me, coloring releases the stress of being in the hospital for so long.”

A personal connection to palliative care

The Natalie Kutner Palliative Care Creative Arts Therapy Program was created to honor the memory of Natalie Kutner—artist, medical social worker, Parkinson’s patient and the mother of Jean Kutner, MD, and CU Anschutz School of Medicine Professor of Medicine. Jean Kutner serves as a physician on the UCH palliative care team, and she played an instrumental role in starting the program.

Although she was already a palliative care physician when her mother’s health began to decline, being a family member of a terminally ill patient expanded Kutner’s perspective. “As a relative, I gained an even deeper appreciation of palliative care,” Kutner said. “The care team provided an extra layer of support that our family relied on.”

Untitled (House) by Natalie Kutner
Untitled (House) by Natalie Kutner

In the final stages of her disease, Natalie Kutner received eight months of palliative care. When Natalie died, Jean Kutner and her father designated the memorial donations for palliative care. Those funds and a generous anonymous donation made it possible to expand palliative care at UCH to include creative arts therapy.

Establishing a creative arts therapy program in Kutner’s honor resonated with her family because of Natalie’s volunteer work in the community and her legacy as an artist. When discussing her own work, she described the power art has to “transmute the ordinary into the extraordinary.”

Creators, not ‘reactors’

A similar transformation occurs in creative arts therapy at UCH, which helps patients cope with the existential pain of a terminal illness and communicate with their loved ones. “The program is an interdisciplinary approach to decreasing suffering and clarifying meaning,” Youngwerth said. “The therapists weave their skills and knowledge of art and music into their counseling and therapy.”

Palliative Care Art Therapist Amy Jones and Music Therapist Angela Wibben maintain a well-stocked “Art Cart” and an ample supply of musical instruments for patients and families.  “Sometimes patients have difficulty coping, overly identify with their disease or worry about leaving their children and grandchildren,” Wibben said. “Creative art therapy expands their definitions of themselves.”

Patient art becomes part of the legacy they leave for their families. One young mother with cancer constructed a bird’s nest out of weaving materials. She included a ceramic egg for each of her children and pebbles to represent the years she spent with her husband. “Creative art therapy looks at a person’s whole life,” Jones said. “It looks for metaphors that ease suffering beyond the reach of words.”

Wibben agrees. “Experiential music therapy may begin by listening to music and lead to a conversation that reveals what music means in our lives,” she said. “That might lead to songwriting, which makes the patient a creator, not a ‘reactor.’”

Turning a life into a legacy

Photographs of Nick and Carol Gonzales' hands, taken by their art therapist Amy Jones
Photographs of Nick and Carol Gonzales’ hands, taken by their art therapist Amy Jones

For Nick and Carol Gonzales, the couple found art creation to be relaxing, but their therapy also brought them closer together. When they left UCH, they took their artwork, as well as Jones’ photographs of Nick and Carol’s hands.

The photographs are a part of Nick’s legacy. “The pictures are really expressive,” Carol Gonzales said. “Seeing his hand over mine—I think of how he protected me.”

“Palliative care is not just medication, it’s emotional and spiritual help,” Nick Gonzales said. “When you share, it helps to heal. I look at those pictures of our hands, and I think of Carol and me taking care of one another.”

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Landmark gift makes CU Anschutz a national leader in veterans health care

Thanks to a gift of $38 million from the Marcus Foundation, the University of Colorado Anschutz Medical Campus will soon become a national model for the diagnosis and care of veterans who have suffered from traumatic brain injuries and related psychological health conditions.

Leaders of the Marcus Institute for Brain Health at CU Anschutz
Standing on the second floor of the CU Anschutz Health and Wellness Center, where the Marcus Institute for Brain Health will be located, are, from left, retired Navy SEAL Lt. Cmdr. Pete Scobell, U.S. Rep. Mike Coffman, philanthropist Bernard Marcus, Dr. James P. Kelly, and CU Anschutz Chancellor Don Elliman.

The Marcus Institute for Brain Health (MIBH) opens this summer in the CU Anschutz Health and Wellness Center. The one-of-a-kind institute will be the cornerstone of a planned national network devoted to innovative and intensive treatment of military veterans who served our nation and now suffer the invisible wounds of war.

The MIBH was announced Friday by CU Anschutz leaders and Bernard Marcus, whose Atlanta-based philanthropic organization has steadfastly supported the health and well-being of military veterans. The luncheon celebration drew more than 100 attendees, including leaders from CU Anschutz’s hospital partners as well as CU President Bruce Benson, CU First Lady Marcy Benson and U.S. Rep. Mike Coffman.

‘Ideal place’ for innovative institute

Bernard Marcus and CU President Bruce Benson
Bernard Marcus, retired co-founder of The Home Depot and founder of The Marcus Foundation, with CU President Bruce Benson.

CU Anschutz Chancellor Don Elliman said the campus is “the ideal place” to establish an institute that promises to transform health care for military veterans. CU Anschutz, once home to the Fitzsimons Army Medical Center, has a long history of serving veterans in addition to providing world-class mental health and wellness care. “We have leading-edge research and innovative programs that literally surround the institute’s efforts,” he said. “The campus is driven by a vision of delivering the best care and pioneering new approaches to treatments that get patients and families back to their lives.”

MIBH Executive Director James P. Kelly, MD, a neurologist and pioneer of customized diagnostic and treatment plans for veterans, led the National Intrepid Center of Excellence (NICoE) at the Walter Reed National Military Medical Center for seven years. The MIBH is designed after NICoE, which has successfully treated more than 1,300 active-duty servicemen and women suffering from traumatic brain injuries (TBI) and psychological health conditions. “Dr. Kelly came to us with that vision,” Elliman said, “and without him we would not be standing here today.”

Dr. Kelly stepped to the podium and, after acknowledging Chancellor Elliman and CU School of Medicine Dean John J. Reilly, Jr., MD, for their leadership, gave an emotional thanks to his wife of 30 years for her unwavering support throughout his career.

Dr. James Kelly of the Marcus Institute for Brain Health
Dr. James P. Kelly, executive director of the Marcus Institute for Brain Health

“The Marcus Institute of Brain Health is uniquely designed to address combined neurological and psychological conditions by targeting underlying causes,” Dr. Kelly said. “Where better to create such a place than the Anschutz Health and Wellness Center on an academic medical campus with a proud tradition of caring for military service members and their families?”

Immersive care

Retired Navy SEAL Lt. Cmdr. Pete Scobell
Retired Navy SEAL Lt. Cmdr. Pete Scobell

The MIBH will immerse veterans in treatment by a team of professionals in one place, rather than having them travel from clinic to clinic, Dr. Kelly said. The institute will optimize the functions of conventional medical diagnostic treatment while integrating alternative approaches such as mindfulness training, physical therapy and massage, acupuncture, yoga, and canine and equine therapy.

Care will be customized to each patient’s needs. “The Marcus Institute for Brain Health will share its lessons learned with systems across the country in real time. … What’s happening in Colorado will reverberate beyond our state’s borders to every corner of this nation,” Dr. Kelly said. “The need for such a program is huge.”

Nearly 400,000 U.S. servicemen and women have been diagnosed with TBI since 9/11 and as many as 600,000 suffered related psychological health conditions, he said.

‘I know I’m not alone’

One of these patients, retired U.S. Army Staff Sgt. Spencer Milo, has been named director of veteran programs at the MIBH. “As a military veteran who sustained injuries in Afghanistan, I am a huge advocate for the Marcus Institute for Brain Health,” Milo said. “Treatment like the traumatic brain injury therapies now being offered here saved my life, and I know I’m not alone.”

Plaque of Marcus Institute for Brain Health at CU Anschutz
CU Anschutz Chancellor Don Elliman points to a replica of the permanent Marcus Institute for Brain Health plaque as Dr. James P. Kelly, MIBH executive director, and Bernard Marcus, philanthropist and retired co-founder of Home Depot, look on.

Retired Navy SEAL Lt. Cmdr. Pete Scobell explained how he was the second SEAL to go to NICoE for treatment of TBI and related psychological conditions. He recalled sitting in a room with a dozen physicians representing “all specialties. They were out to solve the problem, not just treat the symptoms,” he said. “I know this can change lives – it’s unique.”

Cohen Veterans Network partnership

In addition to the announcement of the $38 million gift to create the Marcus Institute for Brain Health, the CU Anschutz Medical Campus announced it will work with the Cohen Veterans Network.

The network, in a partnership totaling $9.8 million, will work with CU Anschutz to build a mental health clinic to serve veteran and military families in greater Denver with free, or low-cost, personalized care and integrated case management support.

Founded by hedge fund manager and Connecticut philanthropist Steven A. Cohen, the Cohen Veterans Network is creating 25 Steven A. Cohen Military Family Clinics throughout the U.S. over a five-year period. Clients, veterans and family members will be treated by high-quality, culturally competent, network-trained clinicians, and will receive referrals to additional services at the CU Anschutz Medical Campus and in metro Denver.

Another distinctive aspect of the MIBH will be its service to military veterans regardless of their discharge status or ability to pay.

“It’s incumbent upon all of us across the nation to help those who have suffered as a result of their military service,” Dr. Kelly said, noting that the care at CU Anschutz will be further augmented by the soon-to-open Denver VA Hospital. Colorado will serve as a national model of seamless transitions of health care for veterans, he said. “It’s our intention that the Marcus Institute for Brain Health collaborate with academic and private-sector partners and the network of specialty centers – all working together to meet the needs of our veterans in multiple locations across the nation.”

Only the first step

Bernie Marcus, the retired co-founder of The Home Depot, said it’s an honor for his foundation to support veterans’ health because proper care for these selfless servicemen and women has been inadequate in the United States. He praised Dr. Kelly’s leadership of NICoE at Walter Reed National Military Medical Center and said the center’s innovative vision will carry forward at MIBH.

“We’re starting here in Colorado with this medical campus,” Marcus said. “This building is only the first step of a major organization that’s going to be unaffiliated; we’ll join together and try to create the best of the best, and that’s what my foundation is all about.”

CU President Bruce Benson said the University of Colorado system has long been committed to serving those who have served our country. “Our campuses and communities are better places for the presence of veterans and military-connected students, families, faculty and staff,” he said. “These new initiatives further strengthen that commitment. We are deeply appreciative of this tremendous support and proud to be able to do our part.”

While the Marcus Foundation’s gift of $38 million is over five years for the MIBH, which will also serve civilian adults who have sustained mild to moderate TBI, the institute is set up for the long term, according to Chancellor Elliman. “Our commitment is to keep this institute going for as long as there is a need,” he said.

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Treatment for multiple recurrent meningioma

Jill Penafiel (second from left) with her daughters and husband
Jill Penafiel (second from left) with her daughters and husband

Ten years ago, Jill Penafiel was watching her teenage daughters play competitive volleyball and noticed that she couldn’t see whether the ball went over the net or not.  She blamed her failing vision on age; after all, she was nearing 40. But when her left eyeball started to protrude slightly, she decided that “something is not quite right here.”

A trip to the doctor—the first of many—confirmed her suspicion. Her left optic nerve was swollen, pushing her eye forward. When she underwent a test of her field of vision, she kept asking when the test would start, not realizing that it had already begun. She was “flunking with flying colors.”

“The doctor said it could be MS or it could be a brain tumor,” she said. “I stopped listening after that. It was just too horrifying.”

Jill had been employed by the University of Colorado since 1993 and was working on the Anschutz Medical Campus at that time. There was no doubt in her mind that she would seek treatment at CU. But she could hardly have imagined the long path her care would follow—and the collaboration between multiple physicians that would ultimately save her vision.

Diagnosis:  Meningioma

In 2007, further testing showed that Penafiel had a meningioma—a benign tumor—almost as big as her thumb wrapped around the optic nerve and invading her brain. Kevin Lillehei, MD, professor and director of the Neuro-Oncology Program, remembers the tumor as “quite significant” because it had invaded the orbit, the bony socket that protects the eyeball and allows the optic nerve to pass from the eye to the brain.

“I don’t feel like I am just a case here. I know my doctors really care.”

“When you go into the orbit, you have all the tiny nerves feeding the muscles that move the eye and you put them at risk,” Lillehei said. “You can end up with good vision, but one eye doesn’t move like the other and that causes continuous double vision.”

Lillehei performed a frontotemporal craniotomy, going underneath the left frontal lobe, drilling away bone at the skull base and removing bone along the lateral part of the orbit. He removed the tumor piecemeal, stopping short of taking all of it because he believed it would be too risky—Penafiel could lose her vision in the eye.

She remembers the first eye test after the day-long surgery. “They handed me a tiny chart to read,” she said. “I could read it! And they were all so excited, saying, ‘She can see!’”

Lillehei remembers that day with characteristic understatement. “We were quite pleased.”

The history:  Chernobyl

Jill Penafiel
Jill Penafiel

Like any person who experiences an unexpected health crisis, Penafiel asked, “Why me?” Lillehei may have provided a clue to that question when he told her that he thought the meningioma had been growing for as long as 20 years.

“He asked me what I was doing 20 years ago,” Penafiel said. “And I told him I was a teenager on scholarship living in Finland.” She arrived in the country in June 1986—five weeks after the catastrophic nuclear accident at Chernobyl. Living with a host family on an archipelago, Penafiel ate fish out of the Baltic Sea every day for three months while a radioactive cloud moved through the area.

“We have no way of knowing if this caused her meningioma,” Lillehei said. “Some are just spontaneous. But we do know that some can be induced by previous radiation. We are seeing that in a pediatric population about 15 to 20 years after they are treated with radiation. She fits that profile.”

Pivotal question:  What kind of birth control?

Penafiel’s tumor was an atypical meningioma (WHO grade II), meaning it was particularly aggressive. “We knew this one had to be watched very carefully,” Lillehei said.

In 2007, after the surgery, she underwent 30 radiation treatments, spent nearly four months recovering her strength, and then put the episode behind her except for annual MRI tests to check on the original tumor.

Six years later, at Thanksgiving 2013, she received more bad news. The original tumor had not changed, but she had developed two additional meningiomas, one at top of her head and one on the side.

“I asked, ‘Why again?’” Penafiel said. “It was hard for my family to hear this news.”

She was referred to Laurie Gaspar, MD, MBA, professor and former chairman in the Department of Radiation Oncology. Gaspar suggested that Penafiel undergo stereotactic radiosurgery, non-surgical radiation therapy which could precisely target the two small asymptomatic meningiomas with fewer high-dose treatments than traditional therapy.

“It was very frightening to her,” Gaspar recalls. “I had to reassure her.”

It took only about a week to recover from the stereotactic radiosurgery. Penafiel returned to her position at the CU Cancer Center, but not before Gaspar asked her what would prove to be a pivotal question. What kind of birth control was she on? Penafiel told her that she used a quarterly contraceptive injection of progesterone. 

Recurrence: A great memory and a gut feeling

In December 2016, Penafiel was looking ahead to 2017. One daughter was graduating from college, she had a trip planned with both her daughters and she was exceptionally busy in her job as the CU Cancer Center Education and Program Manager. She was preparing for “Learn About Cancer Day” for 120 high school students, and managing the Cancer Research Summer Fellowship Program which brings in 40 college undergraduates from all over the U.S. to perform cancer research with CU’s top cancer physicians and researchers.

Then, on Christmas Eve, the phone rang. Lillehei was calling to say that her most recent MRI showed a new nodule at the site of the original tumor behind her left eye.

“He told me that it needed to be dealt with surgically because of the location,” Penafiel said. “It was urgent, and very tough to receive the news about a fourth meningioma.”

Lillehei planned to present the case to the January meeting of the Skull Base Tumor Board. Then, in what would prove to be a prescient move, Penafiel contacted Gaspar to ask if she would attend the board meeting. Gaspar had a gut feeling and a great memory. She asked Penafiel if she was still using the same kind of birth control. Penafiel said yes. With just a hunch, Gaspar dug deeper. She did some literature searches, with a sneaking suspicion the birth control was connected to recurring meningiomas.

“As luck would have it, I was getting together with Dr. Ryan Ormond to talk about recent research,” Gaspar said. “So I asked him if he advises people with recurring meningiomas to steer clear of progesterone, or am I the only one? And he said to me, ‘That’s so weird you should ask me about that.’”

Ormond, who is an assistant professor and director of the CU School of Medicine Brain Tumor Program, told Gaspar that he was researching the association between hormones and recurrent meningiomas. Although the research was not yet published, initial results showed that people on progesterone had a higher rate of meningioma recurrence compared to patients not on the hormone. That information was, Gaspar said, “good enough for me.” She called Penafiel to say that new research supported her hunch and advised her to change her method of birth control—immediately.

The future:  “I  am eternally grateful”

When the tumor board convened, the game plan for Penafiel changed dramatically.

“It certainly changed our mind from going in surgically,” Lillehei said.

Instead, Penafiel started a mild oral chemotherapy designed to attack the meningioma. She will not spend months recovering from surgery and radiation—all because of a conversation between two physicians that Gaspar says is indicative of the collegiality at CU Anschutz which leads to better outcomes and happier patients.

“A lot of things happen just because we talk to each other in informal ways,” Gaspar said. “We learn from each other.”

Lillehei praises Penafiel for her willingness to advocate for herself. “She’s been a trooper,” he said. “She knows what she is up against but she has a tremendous attitude. And after everything she has been through, her vision is 20-20!”

Penafiel is willing to talk about her decade-long care at the CU Cancer Center because she feels she was never alone in the journey. She calls herself a “brain tumor survivor,” and says she is fortunate to have her family and her physicians. “I don’t feel like I am just a case here,” she said. “I am a person. I know my doctors really care. And I am eternally grateful.”

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