Circle of Life honoree uses creative arts to comfort families facing serious illness

The most agonizing part of the sick father’s serious illness was the thought of leaving his young children behind. But with the assistance of a music therapist, he was able to give them a recording of his usual bedtime routine with his daughters, with the sound of his heartbeat in the background.

“It was something they can hold onto for the rest of their lives,” says Angela Wibben, a board-certified music therapist who is part of the creative arts therapy program with the University of Colorado Hospital (UCH) Palliative Care Consult Service.

Wibben works with Amy Jones, a palliative care board-certified art therapist, to provide families with a tangible part of their loved one after they’re gone. Music therapy may include helping patients write songs to their families, while art therapy may produce a photo collage or legacy jewelry containing the patient’s heartbeat tracing or fingerprint.

Their work goes beyond assisting people with creating art and using it for their emotional benefit, Wibben says. “[Our] work lies in the therapy piece of it,” she explains. “We often say it’s not about the product, it’s about the process.”

An evaluation of the creative arts therapy program found it improves patient-reported pain, anxiety, and well-being, and enhances quality of life through an emotionally therapeutic effect. Wibben and Jones are developing creative art therapy outpatient workshops for patients, families, and caregivers, and they have produced two iBook compilations of patient and family creations called “Creative Connections.”

The creative arts therapy is one of Chief Medical Officer Jean Kutner, M.D.’s favorite parts of UCH’s innovative palliative care program. Kutner started the palliative care program at UCH in 2000 as the first hospital-based palliative care program in Colorado and among the first in the nation. 

“It really came out of the realization that there has to be a better way to care for the patients in our hospital and our families that have serious illnesses,” Kutner says. The program began as four physicians who volunteered their time; hospital leadership was supportive of the idea but couldn’t provide any funding. Eventually, they brought on an advanced practice clinical nurse specialist who served as the “heart and soul” of the team, Kutner says. 

“We’ve incrementally grown since then, with that focus of always measuring what we do so we can demonstrate our outcomes,” she says. “Our team culture and interdisciplinary approach is one of our significant strengths.”

The program continues to innovate with a goal of spreading palliative care competencies far and wide. For example, the University of Colorado welcomed Amos Bailey, M.D., professor of medicine, whose vision was to create a master’s degree in palliative care that would be open to all types of health care providers, not just physicians. Designed to appeal to mid-career professionals, the program enables them to do much of the coursework online. The first group graduated in 2018 and included physicians, nurses, physician assistants, pharmacists, social workers, psychologists, and others. 

“We emulate the experience of the palliative care medical fellowship,” explains Bailey, who directs the master’s program. The online curriculum consists of videos of eight different patient and family scenarios that the students must navigate. They spend two years in the program, with three in-person training sessions. The idea is to spread high-quality palliative care training beyond the small number of physician specialists who are produced by palliative care medical fellowship programs. “The advantage to this kind of program is you can scale it to as many people as are interested,” he says. While UCH has three palliative care medicine fellows each year, the master’s program already has graduated 56 students. An offshoot of the master’s program is another innovation: a demonstration project that would allow physicians to use the curriculum as part of an alternative training pathway to become eligible for board-certification in palliative care.

UCH also supports training in spiritual care through a clinical pastoral education fellowship. The training is based on a medical residency but is for people training to be chaplains in palliative care. “The fellowship is specifically for people with a passion for palliative care,” explains William Jensen, a palliative care chaplain at UCH. “Even if they don’t end up in this field, the interdisciplinary experience is huge. They learn goals-of-care conversations, working as part of the team, and they gain a lot of insight into patients’ experiences.”

Along with maintaining a 24-hour palliative care consult service for inpatients, the program provides services through a palliative care clinic and via telehealth through a partnership with a rural community hospital. In another innovative move, UCH developed a neuropalliative care clinic dedicated to the needs of patients and families affected by neurological illness.

Even as the UCH team finds new and meaningful ways to help patients and families, its strength lies in the team’s truly interdisciplinary and unique approach, says Jeanie Youngwerth, MD, director of the palliative care service. “We get interested in doing things that maybe haven’t been done before or ask how we can improve something to make a smoother process,” she notes. “We make sure everything is practical and bring it back to the patient-care level.”

She cites the rural outreach telehealth program as an example of the UCH team problem-solving. While partnering with a small, remote hospital with a cancer center that serves people living in a large, mountainous area, the UCH team wanted to collaborate to bring specialty-level palliative care to rural areas that did not have specialists. 

“Initially we were thinking maybe we could have UCH palliative care providers go to the rural hospital, but that’s three and a half hours away and was not practical,” Youngwerth says. Instead, they worked with a physician assistant at the rural hospital to create the telehealth palliative care inpatient service. It is composed of rural hospital advanced practice providers and social workers and chaplains working together with UCH palliative care board-certified physicians via telehealth to bring an interdisciplinary palliative care team to the bedside. Several of the rural practitioners also have signed onto the palliative care master’s program at UCH to become palliative care community specialists.

“Our collegiality in working together translated to seeing how we could bring quality palliative care to reach more people, even when it’s outside of our institution,” she says. “As the rural hospital team members become more fluent over time and more experienced with palliative care, they will become a self-sustaining interdisciplinary palliative care service, won’t need the board-certified doctors from the university, and can deliver palliative care as their own specialized team.”

Click here to learn more about the Circle of Life Award: Celebrating Innovation in Palliative and End-of-Life Care and to download an application for the 2020 awards.

The deadline for 2020 Circle of Life Award applications is Aug. 16.