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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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