UCHealth pilot: Involving patients and family early on in plan of care

October 30th, 2018

On a Friday afternoon in mid-September, Larry Batman lay in a bed in the Cardiac Intensive Care Unit (CICU) at UCHealth University of Colorado Hospital on the Anschutz Medical Campus. He’d been in the hospital for six weeks, a challenging stay that was not yet over. But the journey to UCH started nearly two decades earlier on a stretch of road in Colorado Springs.

In 2000, Batman, then 51, was driving east on Woodmen Road in an Acura Integra when the driver of an SUV traveling in the opposite direction unexpectedly made a U turn in the middle of the road. Batman crashed into the SUV. He suffered a shattered leg and other traumatic injuries, including fractures of his ribs, wrists, shoulders, elbows and a badly bruised his heart.

A photo of Larry Batman with his three-wheel bike.
Larry Batman with his three-wheel bike, which he rode regularly prior to surgery to implant an LVAD. Batman spent weeks at University of Colorado Hospital in intensive care. Photo courtesy of Karen Batman.

The crash sent Batman to a hospital intensive care unit for 10 days, but the damage was lasting, his wife Karen related. He needed a defibrillator and pacemaker to manage erratic heart rhythms. In 2003, he had surgery to repair a mitral valve worn out from the strain.

Despite the ordeal, Batman stayed active. After 37 years in the Springs, he and Karen moved to tiny Iliff (population 236) in northeast Colorado in 2015. There, Larry built a two-story barn, rode his motorized three-wheel bike, maintained a long hobby of restoring Model A Fords and served as an on-site supervisor for Iliff’s construction of a wastewater plant.

“He walked the site every day from 6:30 a.m. to 2:30 p.m.,” Karen recalled.

Critical turn

But in February 2018, Larry’s battle with heart disease entered a new phase. His cardiologist in Sterling, worried that his condition had worsened, referred him to the Cardiac and Vascular Center at UCH. In late June, Larry spent a week at UCH to rid his body of water that accumulated because his heart was weakening. In July, he was back for the same reason when new and shocking news arrived: a specialist from the Heart Failure Clinic approached the Batmans to present them information about a left ventricular assist device (LVAD), which provides mechanical circulatory support for a badly diminished heart.

The couple was taken aback. “We said, ‘What is this? Why are we looking at this?’” Karen said.

Dr. Jay Pal, surgical director of UCH’s Mechanical Circulatory Support Program, helped them to absorb the shocking news that without an LVAD, Larry probably had only six months to a year to live. But Pal also offered reassurance.

“Dr. Pal had told us that Larry was a good candidate for the surgery and gave him the confidence to go ahead with it,” Karen said. With that, Larry agreed to the LVAD surgery, postponing a planned trip to Orlando to see one of the Batmans’ daughters.

Pal performed the procedure successfully on Aug. 7, 2018. But Larry’s problems weren’t over. He required abdominal surgery to remove a section of intestine and had to go on dialysis for a time. His liver function also declined.

Larry Batman poses before a two-story barn he built in Iliff.
Larry Batman poses before a two-story barn he built in Iliff, Colorado. Photo courtesy of Karen Batman.

Intensive attention

On that mid-September afternoon, Larry smiled weakly as he lie in his CICU bed and spoke briefly with a visitor. His ordeal, starkly described by Karen, struck home. But her vivid retelling underscored that injury and disease also inflicts pain and suffering on those who love and care for its victims.

That recognition and the commitment to addressing it lie at the heart of an initiative at UCH. The “ICU Early Patient/Family Engagement” pilot, launched in the Cardiothoracic ICU (CTICU) about a year ago, is now underway in the Surgical Trauma ICU and will ultimately be in place in all the hospital’s ICUs.

The goals include identifying within 24 hours a “health care decision maker” authorized to speak on behalf of the patient; holding a “meet and greet” between the health care decision maker and the multidisciplinary ICU team to identify goals of care within 72 hours of admission; involving patients and family members in daily rounding by the care team; and consulting regularly with the Palliative Care team on difficult clinical cases.

A complete team approach

The commitment also includes membership for the hospital in the Center to Advance Palliative Care, which provides educational modules available to all UCH staff, providers and learners who create an account.

The project, which has the backing of UCHealth President and CEO Elizabeth B. Concordia and her senior leadership team, is designed “to best meet the needs of critically ill patients and their families,” said Dr. Jeanie Youngwerth, director of the Palliative Care Service at UCH. In practice, that means ensuring that they have open channels to providers to communicate their values and goals of treatment – especially important for seriously ill patients who are intubated or sedated.

“Many patients in the ICU can’t speak for themselves,” Youngwerth said. “We want to make sure their voices are still heard.”

A quicker connection

Those voices can get lost in the bustle of an ICU handling multiple complex cases. The early engagement pilot aims to reduce the inevitable anxiety of critically ill patients and families, said Dr. David Fullerton, surgeon and chief of the Division of Cardiothoracic Surgery at the University of Colorado School of Medicine.

Batman in one of the Model A Fords he’’s restored. Photo courtesy of Karen Batman.

“These are potentially life-changing events for patients, but even more so for families. Very often there is absolutely no opportunity for families to prepare themselves mentally for the fact that their loved one is going to be in the ICU, very sick, for a protracted period of time. I think that by extending ourselves from the very beginning to those families, to make sure they know who we are, and who they can go to to seek help, we are providing an invaluable service.”

It is vital to identify a health care decision maker early in a patient’s care, Fullerton added.

“It is not rare that a person winds up in a critically ill situation very unexpectedly and before they establish a person with medical power of attorney,” he said. The ICU initiative, he added, “facilitates the process of identifying that person before it is absolutely necessary to do so.”

Family ties

The CTICU pilot has helped to “normalize” interactions between the ICU team and patients and families related to identifying, and revisiting, goals of care, said Dr. Jean Kutner, chief medical officer for UCH and a specialist in palliative care. One key element: establishing each service’s social worker in the role of “point person” responsible for organizing the initial “meet and greet” that acquaints the multidisciplinary care team with the patient’s health care decision maker. She praised social work lead Emily Scott and the social work staff for filling that role.

In the CTICU, it’s handled by Matthew Stoffel. He said early meetings with family members are important to get them talking about goals of treatment, finalizing advance directives, designating medical power of attorney and other considerations pertinent to the patient.

“It’s an extra layer of communication to facilitate dialogue right away,” Stoffel said. “Overall, we try to give families comfort and reassurance with regard to the overall plan of care. Sometimes that’s just a review of what’s going on that they can process in a less stressful place.”

What’s success?

Stoffel noted that the hospital has established outcomes measures for the pilot, including the percentage of cases in which a health care decision maker is documented by day one of the ICU admission; the percentage of patients whose goals of treatment have been identified by day three; the percentage of patients whose family has met with the multidisciplinary team by day three; and the percentage of patients with an advance directive in the Epic electronic health record by day five. But he added that he doesn’t see the pilot’s success determined by mere numbers.

“Positive feedback from families and patients is what I care about,” he said. “If I’m meeting folks and they’re feeling supported and know I’m there and can call me when things get rough and they’re appreciative of staff, that’s the important stuff for me.”

Beyond the clinical

Dr. Jean Kutner and her staff works in the Oncology department at the Anschutz Inpatient Pavilion. (Photo by Glenn Asakawa/University of Colorado).

John Karels, associate nurse manager of the CTICU, said the pilot has brought a “renewed” commitment to ensuring the unit addresses the concerns and questions of the patient and family just as consistently as it addresses each medical issue.

“In the busyness of health care, we can get caught up in the belief that everyone is aware of the patient’s plan of care,” Karels said. “We may come to the bedside with what we believe are the patient’s best interests in mind, but sometimes little points of communication between the health care provider and patients and families can get dropped or lost. We’re refocusing on meeting the goals of the patient.”

Listening

That approach is essential to creating an open culture in the ICU, something that can be difficult to do in a space where time is tight and pressure is high. As Fullerton noted, the CTICU and many other units at UCH frequently receive patients referred from other hospitals because their conditions have worsened.

“They arrive to a completely new environment knowing that their loved one is critically ill,” Fullerton said. “In those cases, it is particularly important to extend ourselves from the very outset, not only to introduce ourselves but to make sure that they know they are in a [place] that will be supportive of everything they need.”

For Michelle Feller, a registered nurse and director of critical care, cardiology and dialysis at UCH, the ICU initiative is “forward thinking” and an effort to make health care more transparent and collaborative. That requires listening, she said.

“We have to make sure we know the details about family members’ loved ones,” Feller said. “That promotes individualized care. One person may have the same diagnosis as another, but how they respond to treatment is individual.”

Uncharted territory

Karen Batman knew nothing of these internal decisions and discussions when Larry rolled into the CTICU following his LVAD surgery. The surgery had gone well, but now a long and challenging recovery lay ahead, one that was to be fraught with new medical concerns. Karen said the CTICU team quickly connected with her, making sure she was invited to join them during daily rounds and to ask questions.

The back-and-forth between providers during rounds can sound like a foreign language to a non-medical person – a potential source of stress in and of itself. Karen said she didn’t feel that.

“There was always one doctor to fill in and put the discussion in layman’s terms and tell me, ‘Ok, this is the plan.’ That went very well. They would also wait on the rounding to see when I was there.”

Nearly without exception, Karen added, she received consistent information about Larry’s condition, regardless of who she spoke with.

a photo of Dr. David Fullerton
Cardiothoracic Surgery Chief Dr. David Fullerton stresses the importance to the initiative of identifying each ICU patient’s health care decision maker early in the stay.

“It gave me confidence to know that they all were looking at him as a team and that they were doing everything they possibly could to make him get well,” she said. “We could understand what they were doing.”

Palliative care assist

The Palliative Care team played a crucial role in helping the Batmans through the “roller coaster ride” that followed the LVAD and abdominal surgeries, Karen said. “They started before surgery to explain their role and visited us in the unit,” she said.

That role was to help Larry identify his own goals for his care – ideas that might change during the course of his treatment. His experience illustrates how important palliative care is to the ICU patient/family engagement initiative.

Karen watched as Larry’s surgeries and complications weakened him and sent him into decline, physically and emotionally.

“At one point I thought my husband was about to give up with everything that had gone on,” Karen recalled. She asked Harri Brackett, lead advance practice nurse for the Palliative Care Service, to speak with him, outside of Karen’s presence, so he could express himself as honestly as possible.

The line in the sand

Brackett previously had helped Karen and Larry fill out a “Five Wishes” advance care booklet. In it, Larry identified his “line in the sand,” which was stopping treatment when he was no longer “cognizant” or “interactive,” Brackett said.

“That day when he and Karen were feeling so forlorn, I reminded them of that – especially Karen,” Brackett said. “He was still able to be aware of things and interact and I told them, ‘It wasn’t time yet,’ and they needed to keep going, based on what he had said was his line in the sand.”

“Harri told me that he still had that fight in him,” Karen said.

Music to the ears

Another source of strength and inspiration was Angela Wibben, music therapist with the Palliative Care team, Karen said. Wibben visited Larry in the CTICU, singing “Teddy Bear” with him to his granddaughter, an Elvis fan. After he transferred to the CICU, Wibben returned for another round of songs.

A photo of two advanced practice nurses
Harri Brackett (right), lead advanced practice nurse for the Palliative Care Service, with director Dr. Jeanie Youngwerth, helped Batman and his wife Karen through a difficult recovery after LVAD surgery.

“She told him, ‘I’m going to sing you out the door. I’m going to sing you ‘Happy Trails,’” Karen said. “She would light up his day.”

The bedrock goal of the ICU early engagement pilot is improved patient care. Kutner points out that “there is a growing body of evidence that having early family engagement leads to positive outcomes that are consistent with the goals and values of the patient.” But of course true outcomes are measured in the lives of people like Larry and Karen Batman.

By the first week of October, with his 70th birthday just days away, Larry had moved from the CICU to the Rehabilitation Medicine Unit at UCH, one more step toward regaining his life. He hoped to be home for his birthday. Karen said they were pointed to another goal.

“Our 50th anniversary is in December,” she said. “He’s going to make it.”

 

About the author

Tyler Smith is a freelance writer based in metro Denver.