The “Art” of Compassionate Care

Perhaps one of the most important aspects of our Schwartz Center Rounds® program is the voice it gives to caregivers. Rounds serve as an outlet for expression, a forum where healthcare providers can communicate with each other in an incredibly honest and open way about the most personal and human aspects of healthcare. It is at Rounds that providers talk about the difficult patient situations they face, receive support from other clinicians, and gain the insights necessary to become more compassionate caregivers.

At The Children’s Hospital of Philadelphia (CHOP), which has been conducting Rounds since 2007, the program’s success has inspired another form of expression: Rounds that highlight how caregivers use creative outlets to build the resilience to thrive in an environment in which they regularly care for seriously ill and traumatized children and their families.

“Surrender” by Felicia Alleyne, RN

The program, called “Arts and Humanities: Building Staff Resilience,” was developed by Elizabeth Steinmiller, a clinical nurse specialist in mental health and Rounds facilitator, and Dr. Wynne Morrison, a critical care physician and co-champion of Rounds, with staff from the hospital’s Child Life, Education, and Creative Arts Therapy Department.  They have delicately and diligently worked to make this annual event a safe place where employees’ artistic expression is embraced and honored.  As Steinmiller notes, “This is not a talent show, but a way of dealing with the stresses of being a caregiver.”

Since its introduction in May of 2008, these creative Rounds have inspired a multitude of presenters, from a trauma nurse who has turned to nude sketching to repair the wounds of caring for broken bodies to a therapist who writes his own music to cope with challenging therapy sessions. The sessions typically attract more than 100 busy clinicians, about the same number who attend more traditional Rounds sessions.

Caregivers are asked to share creative pieces that express their feelings and emotions about their work. According to Steinmiller, “We have included instrumental and vocal musical performances, photographs, paintings and drawings, fabric art, and readings of poetry and prose. Each presenter is expected to comment on how his or her creative work has affected interactions with patients and families. Many presenters have spoken of how their creative work helps them cope with the demands of patient care.”

Photo by respiratory therapist Michael Francis Duff

The program has inspired some clinicians to return to artistic pursuits they had abandoned. Cardiologist Dr. Beth Kaufman had stopped playing the flute when she entered medical school. “Performing music had always been restorative for me and at Rounds, I asked for advice on how to get started again,” she says. “I received concrete suggestions and was welcomed into the artistic circle at CHOP.”  Beth now performs as part of the Baby Blue Sound Collective, a group of her cardiology colleagues that performs to raise money for heart disease.

As one indication of the program’s success, Dr. Stephen Ludwig, a senior physician in general pediatrics at CHOP who shared his own photography at one of the first arts and humanities Rounds, recently provided financial support to the program out of his endowed chair in pediatrics.  This will ensure that the hospital can continue to offer these special sessions in the future.

As one Rounds participant at CHOP wrote, “This is an important reminder to all of us to continue to pursue our creative outlets to ensure a healthy balance in our lives.  These interests allow us to step away from our daily routines, stretch our outlooks, and return to CHOP refreshed and nourished.”

As a caregiver, how do you use artistic expression to build resilience?

A Two-Way Street

The life of Laurie Schwartz Naparstek, chronicled in the Boston Globe this week, reminds us that compassionate healthcare is a two-way street.

Laurie Schwartz Naparstek and Ken Schwartz

Laurie, who was Ken Schwartz’s sister, a founder of the Schwartz Center, and a longtime board member, died in early December at Massachusetts General Hospital after being diagnosed with pancreatic cancer.  She was only 52.

Despite her devastating diagnosis, she was able to do something that helps promote compassionate care.  She understood that her caregivers at Mass General were suffering too, and so she cared for them right back.

According to her husband, Jay, the nurses told him and other family members that Laurie “gives more to us than we could ever give to her.”  The nurses would argue over who got to care for her because she had a way of making them feel so good.

“They would come in and ask how she was doing, and she would turn it around and ask how they were doing or how their kids were,” Jay told the Globe.

Imagine how it must feel to be a nurse caring for a dying patient, particularly a patient who was as young and vital as Laurie was.  And then imagine how it feels to have that patient show equal concern for you.

Caregivers today are under extraordinary pressure.  The world of healthcare is changing dramatically, with increased demands being placed on many caregivers.  In an article in the Journal of the American Medical Association last year, for example, it was estimated that 30-40% of physicians are experiencing burnout.  The reasons?  Excessive workloads, difficulty balancing their personal and professional lives, and a general deterioration in working conditions.

While not every patient is capable of the kind of extraordinary compassion that Laurie showed, those who can make it more possible for caregivers to move on to the next patient refreshed and renewed and able to provide care compassionately.

Honoring the Best – Vilma Barrios

At our annual dinner, before a rapt audience of more than 2,000 healthcare CEOs and practicing clinicians, we announced the winner of our 2011 Schwartz Center Compassionate Caregiver Award®.  She is Vilma Barrios, a certified nursing assistant at Circle of Caring at Hospice of the Good Shepherd in Newton, Massachusetts – the first CNA and hospice caregiver we’ve ever honored.

We were thrilled to be able to recognize someone like Vilma, who is one of the many unsung heroes in our healthcare system and represents a critically important and growing sector of healthcare:  in-home care. 

Vilma is a native of Guatemala who came to the U.S. when she was just 16.  Within a short period of time, she married, became a citizen, and started a family.  Vilma worked in manufacturing for about 10 years, but says she never found much meaning in her work.  When her company announced it would be moving out of state and an employment counselor suggested she become a CNA, she jumped at the chance.

“I began to notice older people in grocery stores and shopping malls,” she says.  “Helping them gave me great joy.  The problems of the elderly soon hit close to home when my mom had a stroke.  Caring for her made me realize my true calling.”

Vilma says that people in need of hospice require special care and understanding.  “The patients and their families are suffering, knowing that a lifetime of experiences and relationships will soon end,” she explains.  “I try to give them comfort and support.  For some, our time together may last only a few days, for others it may stretch into months.  No matter how long we are able to be together, I try to make our time as pleasant, pain-free, and happy as possible.”

According to Hospice of the Good Shepherd social worker Peggy Brown, “Vilma is able to talk to our patients and their families about end of life issues in a personal and meaningful way that respects the values of our diverse patient population and the choices people have made about their care.”

In addition to her work with terminally ill patients, Vilma also cares for younger individuals with disabling chronic conditions.  As a result of this experience, she volunteers on the weekends for a nonprofit theatre group that integrates artists with and without disabilities in the arts.  She describes herself as someone who loves to sing, dance, and write.  She has written poems for her patients and often sings to comfort them. 

Vilma describes compassionate care simply.  “I listen,” she says.  “I speak very softly.  I do not rush.  If it takes an hour to convince someone to bathe, I’m in no hurry.  I want to make my patients’ last days as comfortable and painless as possible.  My job is not easy, but it has taught me to value life even more.”

The Schwartz Center Compassionate Caregiver Award is made possible in part by the generosity of AstraZeneca, a leading pharmaceutical company.