In recognition of Inflammatory Bowel Disease (IBD) awareness month, students Diana Ir, Hailey Hyde and Jacqueline Garner in the Colorado School of Public Health created a public health awareness video about the disease. IBD, which includes Crohn’s disease and ulcerative colitis, currently affects about 1.6 million Americans.
Featuring Brett Forrest, a local reporter, and his personal experiences with IBD, the group hopes to shine a light on a stigmatized disease.
“Medications, surgery and lifestyle changes can have a life-changing effect for those who are suffering from IBD,” said Ir of the importance of spreading awareness. “Our message and goal is to encourage individuals to contact their physicians if they believe they may have IBD or symptoms of IBD. Through this video, we hope to reduce stigmas associated with the disease.”
Sokol was introduced as AASLD president in a recent article in Hepatology magazine. “Ron has made significant contributions to the field of hepatology through his clinical expertise, research, mentoring, advocacy and service within national organizations,” the article states.
The article in Hepatology went on to say that Sokol has been an NIH-funded investigator since 1986 “and has received an astonishing $200 million in grant support to date. His major clinical interests are pediatric hepatology and liver transplantation. Ron’s scientific interests include the mechanisms of vitamin E deficiency and cholestasis; the role of mitochondria and oxidative stress in liver injury; the mechanisms of liver cell injury in cholestasis; fatty liver, and parenteral nutrition-associated liver injury; the pathogenesis of biliary atresia; and the development of predictive models for rare childhood liver diseases.
“To that end, Ron has published 250 original articles pertaining to basic science, translational and clinical research studies in pediatric hepatology.”
“He is extremely well-trained and very interested in finding alternative ways to treat this disease,” Carol Blake said of Birlea, as migraines are still a poorly understood brain disorder. “When you get a doctor who is current in the research and has the ability to treat you well, it’s like dynamite. You can’t ask for anything better than that.”
‘It scares you to death’
Blake joined the 1 billion people worldwide who suffer from migraines during her third pregnancy 36 years ago. But the headaches, which can have a hormonal connection, went away after her fifth daughter was born, even completely for a four-year stretch.
With migraines often ceasing after age 55, Blake hoped she was in the clear. No such luck. They returned. And this time, with a “vengeance,” the former writer said. “I would sometimes get migraines four times a day. One would subside, and another one would hit.”
Her relentless episodes put her in a class of chronic migraine sufferers, defined as patients who have 15 or more migraines per month. The rarer group, which includes about 4 million of the 39 million U.S. migraine sufferers, is not a fun club.
“I would lose vision in my right eye,” Blake said, explaining her “aura,” vision changes that signal migraine onset in some patients. “It scares you to death.” For the period following the aura, which can last anywhere from hours to days, Blake couldn’t bear light or noise. She couldn’t stand the thought or smell of food. And, of course, her head pounded.
A passion for change
“Migraine is one of the most common neurological conditions,” said Birlea, assistant professor and director of Headache Fellowship in the CU School of Medicine Department of Neurology. More than 90 percent of sufferers are unable to function during episodes, and women who have auras with migraines are at increased risk of stroke, said Birlea, known for his research on possible migraine connections to viruses, such as shingles and herpes.
Passionate about changing the way migraines are viewed by the public and in the medical field, Birlea said migraines are under-recognized and under-treated.
Since its Food and Drug Administration approval in 2010, BOTOX® injections have been the standard of care for uncontrolled chronic migraines, Birlea said. “And it’s my understanding that of the millions of sufferers, a minority of chronic migraine sufferers are receiving it.”
When you get a doctor who is current in the research and has the ability to treat you well, it’s like dynamite. You can’t ask for anything better than that. – Carol Blake
‘Like a dream’
Before finding Birlea, Blake had received minimal treatment over two months at home in Pennsylvania without real success. On her initial visit to the Aurora clinic, Dr. Birlea spent two hours in consultation with Blake and then began a battery of tests to rule out other underlying medical problems.
At the clinic on the CU Anschutz Medical Campus, Birlea and his staff use a comprehensive and collaborative treatment approach. Patients learn about nutritional and other triggers that can set off a migraine, such as stress, glaring lights and interrupted sleep patterns.
After discussing his extensive experience with BOTOX® and its effectiveness and minimal side effects, Birlea and Blake opted to try it. Along with the injections, Blake began taking B-12, magnesium and B-2, often effective in dealing with chronic migraine.
“That’s when we could see that we were beginning to get the headaches under control,” Blake said, adding that Birlea’s knowledge and approach made a difference. “I know what a good doctor looks like, and it was like a dream finding him.”
Recent CU Headache/Pain Medicine Clinic news:
The clinic was recently chosen for a University of Colorado Hospital pilot program implementing a practice transformation model. Under the plan, medical assistants care for the patient in the exam room, taking histories, ordering lab work, transcribing for the doctors, and making follow-up appointments, steam-lining care and leaving providers to focus solely on their patients.
A cohort of clinic providers recently attended Headache on the Hill (HOH), an event that joins patients, scientists and caregivers from across the country at the nation’s capital to advocate for pain-management research.
The clinic recently became one of a select group of centers in the country to join the American Registry for Migraine Research (ARMR), expected to be instrumental in creating a better understanding of the disease.
With its approval expected in the next few weeks, the clinic plans to offer an antibody injection that blocks calcitonin gene-related peptide (CGRP), a protein involved in migraines. The subcutaneous injection possibly could be self-administered.
‘Such faith in him’
During a recent injection procedure, after much small talk about everything from what college Birlea’s son had chosen to what traveling the Blakes had done recently, Birlea began the procedure, which, according to protocol, involves 31 tiny injections from the front to the back of the head.
“Her friends are all jealous of her forehead,” Jeffery Blake said, as Birlea worked. BOTOX®, which prevents migraines by blocking pain signals, allowing the brain to heal, also erases wrinkles.
As Birlea asked Blake to sit up from the exam table, so he could start the injections on the back of her head, she told an observing physician assistant in training: “I barely feel them. I’ve never felt much when he does it. He’s so good at it.”
Blake, who always hears the latest research news on migraines when she sees Birlea, said she was interested in a new injectable treatment to be offered soon that would not require her huge travel commitment. But she said she would remain Birlea’s patient regardless of her treatment plan.
“I’d still want to see him at least once a year. I have such faith in him. He is the essence of a really caring and competent physician.”
Although the 90-minute phone marathon can offer a crash course in stress control and mental cleansing, it provides CU, volunteers and Channel 9 viewers so much more, participants say.
“It gave me a sense of the needs of the community members, and it helped me learn how to think on the spot,” Larson said. “As a pharmacist, it’s really important to be able to communicate effectively and respond accurately in a way that the patients understand. It was great practice.”
Fulfilling a growing need
Because of the popularity of the service (no volunteer’s phone ever sits quiet) coupled with serious medical matters taxing the community, Channel 9 recently boosted the airings, making Pharmacist Line9 a monthly event, said Lynne Valencia, Channel 9 vice president of community relations.
Many of the questions I answered I felt really made a difference in their lives, whether it was preventing drugs from falling into the wrong hands or averting a serious health event. — Briana Williams
From an opioid-addiction crisis gripping the state to a severe flu season lingering on, critical issues have heightened the need for the partnership, said Valencia, an alumna of CU Denver. “CU students and faculty members supply the expertise that people are looking for, and we provide the platform. They offer our viewers sound advice and a great service.”
“It really can help supplement what you are learning in class,” said third-year graduate student Briana Williams, an active volunteer, including with Line9, and an intern at University of Colorado Hospital. “You definitely get questions right off the bat that you are like: I have no idea how to answer this. But you have to think on your feet and use the resources that you are taught in pharmacy school.”
Facing tough questions
Armed with Centers for Disease Control guidelines and other medical and prescription directives, Williams and Larson quickly fell into the groove of the call-ins, which generally include two students and two faculty members. Apprehensive her first time, when she was a second-year student, Larson said she remembered a lesson from school: It’s OK to say I don’t know.
Calls can run the gamut from the simple — Where can I get a flu shot? — to the moderate — How do I dispose of addictive medications? — to the complicated — What will I do if I can’t refill my pain-pill prescription?
With new regulations threatening opioid access, many calls relate to the crisis, including from fearful patients who rely on the drugs, Larson said. “I found those questions kind of challenging. A lot of these people have been living with chronic pain for years, and it’s the only thing that can get them out of bed in the morning.”
The anonymity factor can embolden callers to ask more complicated and sensitive questions, Williams said. “Without having to actually go to a physician or pharmacist and see them face to face, they can ask these questions without thinking in the back of their minds that somebody is judging them,” she said.
Volunteers can confer with their colleagues on the Line9 desk, or, when a question falls outside of their expertise, refer the callers to their physicians, Williams said. “You have to know your boundaries and your scope of practice.”
Educating the pubic
Regardless of whether they can answer the question, the volunteers educate patients and urge them to use their physicians and pharmacists as resources. “I don’t know a pharmacist who wouldn’t provide any patient a phone consultation, but a lot of people don’t know that,” Larson said.
I think it really gets out to the public that pharmacists are not just pill-pushers; that we really have a lot of education that we go through to provide more services. And we are typically one of the more accessible health care professionals. — Briana Williams
Williams, who said she chose the CU Anschutz Medical Campus for graduate school partly because of the state’s progressiveness in the pharmaceutical field and the school’s emphasis on multidisciplinary teamwork, said taking part in events like Line9 also helps educate people about her profession.
“I think it really gets out to the public that pharmacists are not just pill-pushers; that we really have a lot of education that we go through to provide more services. And we are typically one of the more accessible health care professionals.”
‘A greater purpose’
A lot of people don’t know where to go for help, Williams said. “Many of the questions I answered I felt really made a difference in their lives, whether it was preventing drugs from falling into the wrong hands or averting a serious health event.”
In today’s competitive world, volunteering can also boost student’s chances at jobs and residency programs, said Williams and Larson, who both work in pharmacies and have their eyes on residencies post-graduation. Larson recently learned that she matched to a PGY1 residency with UCHealth Memorial in Colorado Springs.
Residencies are not required, but they can help set pharmacy students up for careers in hospitals and clinical settings after graduation. This year’s residency numbers for CU Pharmacy are on par with previous years, with 64 percent of those who applied matching, tying the national average.
“I just can’t stress it enough how important work and volunteering is,” Larson said. It also helps students stay focused on what comes at the end of their heavy college load. “I remember going to work after an exam and being grateful to see there’s a lot to look forward to,” she said. “It’s all for a greater purpose.”
In the end, his patient died. But as Ajay Major, MD, MBA, then an intern, flipped through the old veteran’s medical record, he found comfort in the memories the notes inspired.
Now Major, a second-year internal-medicine resident on the University of Colorado Anschutz Medical Campus, calls up those memories of the witty old man with terminal cancer who always asked for bourbon (and his devoted wife who always rolled her eyes in response) as a continual reminder of the importance of compassion in health care.
“Medicine is hard,” Major said. “We see a lot of patients with a lot of difficult medical issues, and I think burnout stems not just from feeling overworked, but also from feeling that we’re not truly caring for our patients on a human level.”
Major, co-president of the CU Anschutz School of Medicine (SOM) Resident Chapter of the Gold Humanism Honor Society, spread his message during the society’s annual Solidarity Week Feb. 12-16 by encouraging his colleagues to take part in the week’s centerpiece program, Tell Me More (TMM).
Changing the conversation
Armed with a TMM questionnaire and a smile, second-year internal-medicine resident Megan Griff, MD, entered her patient’s room, finding Betty Redwine, 77, wrapped in a light blanket and relaxing in a chair. “Is it OK to talk and find out about your life?” Griff asked, after explaining the program and introducing Major and attending physician, Jeannette Guerrasio, MD.
“OK,” Betty Redwine said, returning her doctor’s smile. “But it’s nothing exciting,” she said, grinning up from beneath a black-suede, shower-like cap she informed her guests was taming her unruly hair.
Prompted by four TMM questions, Redwine soon was sharing pieces of her past. Topics of capillaries and high blood pressure gave way to children’s feats and life’s treasures, sounding more like tea-time chatter than hospital-room discussion. When Redwine let a little secret slip, the room exploded in utterances of disbelief.
“What?” Guerrasio said, after Redwine revealed she worked as a registered nurse for 35 years. “Why didn’t you tell us?” asked Griff. “My mom is a nurse, too,” Griff said, when the commotion subsided. “You guys are hard-workers,” she said, patting Redwine’s hand.
Staying centered on the cause
While it might seem miniscule, a small dose of compassion can result in an array of benefits, Major said. “It allows the patient to feel that the care team really cares about them, but it also brings some catharsis for providers. Just finding out a little bit more about our patients’ lives outside of the hospital can help re-center us in the work that we are doing as physicians and, I believe, help prevent burnout.”
On the patient side, studies show compassionate healthcare results in higher patient satisfaction, a higher pain threshold, reduced anxiety and better outcomes, according to the Gold Foundation, which cites supporting studies on its website.
“People develop diseases for lots of reasons, and everyone’s lives really affect the way they respond to health problems,” said SOM Chair of Medicine David Schwartz, MD. It makes sense that trusted patient-provider relationships result in better care, he said. “We need to know how their lives might be contributing to the development of disease, and how their lives might contribute to our ability to effectively treat their disease,” he said.
Remembering: ‘I’m a person’
Looking up from her bed as the TMM trio walked into her room, Frances Cory, 79, had them laughing before even agreeing to chat. “You want to talk beyond my medical condition? You mean you don’t care about my medical condition anymore?” said the mother and grandmother, who later responded to a question about her biggest strength: “My sense of humor.”
Cory, who shared with her visitors that she had served more than 5,000 volunteer hospital hours during her lifetime, said she thought the program was important. “It’s nice to know that you take the time to talk to your patients. I’m a person.”
The TMM program offers a valuable reminder for medical students that their patients are people, and not just medical mysteries to solve, Guerrasio said. “I actually, as a doctor, find these conversations really helpful. And it’s what makes me come to work every day.”
Notes about the patient-doctor chat are jotted down on the TMM questionnaire, which is then displayed on the wall so that everyone involved in that patient’s stay, from therapists and nurses to doctors and janitors, can use it as conversation fodder, Major said.
‘The more passionate individuals are about their profession, and the more they enjoy what they are doing, the more engaged they become. These things feed on each other in very positive ways.’ ̶ David Schwartz, SOM Chair of Medicine
Seeing nothing as too small
By getting to know his end-stage cancer patient and his wife as an intern, Major learned not just about his patient’s bourbon routine, but that he was a strong war veteran who had “always been a fighter.” That helped Major, when the man opted for a late chemo-treatment that was questionable at his stage and age. While the patient fared well through therapy, he developed an infection afterward that ended his fight.
When his patient was transferred to hospice, Major told his palliative caregivers about the bourbon. As he looked through his patient’s medical record after learning of his death, Major was jolted by one caretaker directive: Bourbon, one ounce at bed time as needed.
“It seems like such a small detail,” said Major, who published an article in JAMA Oncology about the patient experience. “But when his fighting wasn’t working anymore, he started thinking about things he really enjoyed in life. And having his little bit of bourbon was kind of important to him. So we made sure he could have that to the end.”
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.
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.”
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.
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.”
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.
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.
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.
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).
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.”
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.
“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.”
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.”
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.
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.
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.”
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.
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.