Palliative care gets creative

Clinicians at UCH turn to art and music therapists for help in meeting the needs of seriously ill patients and their loved ones
Jan. 26, 2017

Each time Amy Jones and Angela Wibben enter an inpatient room at University of Colorado Hospital, they do so as caregivers. They are licensed therapists, but they carry surprising resources: yarn, paints, brushes, musical instruments and other objects more familiar to the world of art than the domain of medicine.

Jones and Wibben are, respectively, art and music therapists for a new program at UCH that incorporates the creative arts in palliative care. They began seeing inpatients in late September, melding their creative skills and therapeutic training to meet the emotional and spiritual needs of patients enduring serious medical conditions.

Their work supplements the palliative care provided by clinicians, who work with patients and their caregivers to develop treatment plans that are in keeping with their values and goals, Wibben said.

“Patients can get bombarded with medical information,” she said. “Meanwhile, they are dealing with many ups and downs in their emotions and thoughts. We are there to help them communicate on the non-verbal front.”

Tapping creativity

During clinical rounds, Jones and Wibben listen for clues that indicate a palliative care patient might benefit from a creative approach to therapy – words like pain, coping, anticipatory grief, and anxiety are tell-tale signals. They go to those patients’ rooms to introduce themselves, explain what they do and offer their services.

Examples of artwork that Amy Jones uses to stimulate ideas in therapy sessions with palliative care patients.
Examples of artwork that Amy Jones uses to stimulate ideas in therapy sessions with palliative care patients.

The two help people acknowledge the realities of their situations while finding the resources to respond on their own, highly personal terms. Many of the tools they carry are at first glance unremarkable: key chains, a tiny microphone and audio recorder, a bag of coins. Yet Jones and Wibben use these, along with art supplies and musical instruments, to help patients express themselves – not as individuals defined by illness but rather as people with specific memories, talents, accomplishments and histories.

“I go into a patient’s room without expectations and without a set agenda,” Wibben said. “I try to be open to whatever that person needs.”

The field understandably has not received the amount of rigorous research that has been devoted to clinical realms. But a growing body of literature suggests that art and music therapy – as well as other alternative and complementary treatments – can help all patients, including the most seriously ill, improve their quality of life and ability to cope with physical and emotional challenges.

“This kind of therapy is a huge part of healing that we haven’t fully recognized,” said Jeanie Youngwerth, MD, medical director of UCH’s Palliative Care Service, said. “It helps patients feel like people again. It’s a way to give them back control and decrease their suffering.”

Family connection

For Jean Kutner, MD, MPSH, the hospital’s chief medical officer, the program has a deep personal connection. It honors her mother Natalie, who died in 2014. Trained as a medical social worker, Natalie was also an accomplished visual artist whose work was the subject of a posthumous exhibition at the Fulginiti Pavilion on the Anschutz Medical Campus in 2015.

Kutner said she and her father, Fred, discussed ways to use in-memory donations they had received after Natalie’s death in ways that both reflected her individuality and benefited others. They considered establishing a fund to assist training for medical social workers in palliative care, but ultimately decided on creative arts therapy for palliative care patients.

“As an artist, she volunteered in community-based settings,” Kutner said. “Art was such a meaningful part of her life.”

After developing a business plan and securing approval from the hospital, the Kutners gathered donations sufficient to fund the first year of the Natalie Kutner Palliative Care Creative Arts Therapy Program. Jones and Wibben each work 20 hours a week.

A specialist in palliative care and leader in developing research in the field, Kutner said she has long recognized that patients grappling with life-changing illness need more than clinical care. “As clinicians we talk about personal and patient-centered care,” she said. “Amy and Angela are able to tap into the personal with patients in ways that we can’t and are not trained to.”

Palliative process

Amy Jones (left) and Angela Wibben joined the Palliative Care team at UCH in September.
Amy Jones (left) and Angela Wibben joined the Palliative Care team at UCH in September.

Their qualifications extend far beyond picking up a box of paints or a guitar and spending a free-form hour of idle dabbling. Jones holds a master’s degree in art therapy and is a licensed professional counselor and a registered art therapist. Wibben is a board-certified music therapist with training in psychology, anatomy and physiology. Both incorporate mindfulness and breathing techniques in their work. Most of all, they listen rather than lecture.

“I try to pick up on cues from the patients about what brings them joy and makes them feel calm and connected,” Jones said.

That approach can follow many paths, she added. There is no predetermined finished work at the end of one of her sessions. “It’s more about process than product,” she explained.

Jones recalled that one palliative care patient she saw was “hyper-aware” of her pain, despite the fact that her providers had controlled it with medications. The patient was anxious because of an intense consciousness of her physical sensations, said Jones, who listened and coaxed from the patient the things she missed because they had given her pleasure. That led to discussions of her family, of being outdoors, and the colors of spring.

After allowing time for those feelings and memories to come forth, Jones mentioned to the patient that she had art materials and asked her what would make her feel good. The patient chose yarn in soft colors that suggested spring and with Jones created a scene with outdoor colors.

The finished piece reflected important pieces of the patient’s life, and Jones had been more facilitator than leader. She also had made “creating art” something inviting rather than intimidating.

“I rarely bring a blank canvas for people,” she said. “Many times people haven’t created art since childhood. I try to make it accessible.”

The right notes

Music therapist Angela Wibben uses small coins to spark memories and reflections in patients.
Music therapist Angela Wibben uses small coins to spark memories and reflections in patients.

Likewise, Wibben uses music to relax patients and tap into their inner resources. She said she sometimes strums her acoustic guitar to match their breathing rate and slows down the tempo gradually. The power of music to spark memories is a double-edged sword, she added. A song that might have produced powerfully pleasurable emotions in a patient the past – one played at a wedding or during childhood, for example – might generate sharp feelings of loss during a hospital stay.

“I’m always watching for facial affect when I play,” Wibben said. “I have to be aware of painful feelings and not take someone to a place they can’t come back from.”

Wibben also incorporates songwriting into her therapy. She uses a bag of small coins imprinted with a single letter as a creative conduit. Patients pick up a coin, feel for the letter and express the “intention” or word that the letter suggests and makes them feel best. With “f” for “family,” for example, she might invite the patient to talk about the thoughts the word summons – children and grandchildren living across the alley who are regular visitors, perhaps.

“I ask them to talk about the space it takes them to,” Wibben said. That might lead to simple song, with Wibben using a “therapeutic voice” that matches those of the people in the room. A therapy session is not the place to show off her pipes but rather an occasion to join people together in a positive, reflective moment, she explained.

Serious listening

The point of introducing creative arts in palliative care isn’t to manufacture sunny optimism. As Kutner put it, “It’s clear that what they are doing is therapy. It’s not just creating ambience.” The goal, Jones said, is to allow patients and family members to fit days spent with illness into the broader canvas of their lives.

“I try to be open to what they are experiencing,” she said. “We find ways to reminisce, but also ways to process what they are going through during difficult times.” Art becomes a means of expression that is often “beyond words,” she added.

It’s not only patients who have benefited from the two therapists’ work in their short time with the Palliative Care program, Youngwerth said.

“As providers, we are learning so much from how they approach patients and family members,” she said. “We get to witness an additional dimension of care personalized to each patient.”

In fact, Youngwerth added, an early challenge is managing demand for the services of Jones and Wibben, who for now see only inpatient palliative care patients and are both only half-time.

“We have already gotten so much feedback from staff who said, ‘We want this for all our patients,’” Youngwerth said.

To learn more about the Creative Arts Therapy Program and ways to donate to it, contact Cheryl Balchunas at 303-724-6871 or [email protected].

Send donations to the Creative Arts Therapy Program (Fund 0222843), CU Foundation, Mail Stop A065, 13001 E. 17th Place, Aurora, CO 80045 or visit the CU Foundation website.

About the author

Tyler Smith has been a health care writer, with a focus on hospitals, since 1996. He served as a writer and editor for the Marketing and Communications team at University of Colorado Hospital and UCHealth from 2007 to 2017. More recently, he has reported for and contributed stories to the University of Colorado School of Medicine, the Colorado School of Public Health and the Colorado Bioscience Association.