Patient Family & Community Engagement | Pediatrics | Volunteer Professionals

A Focus on the Person Experience

On the Road with UH Rainbow Babies and Children’s Hospital – May 2015

by Jason A. Wolf, Ph.D.

My most recent On the Road visit took me to University Hospitals Case Medical Center Rainbow Babies and Children’s Hospital. My host for the visit, Mary Ann Dragon, Director, Patient and Family Services, is also an active board member of The Beryl Institute and a long time volunteer leader in our community. Mary Ann’s commitment to our movement shined through in her excitement to showcase the fundamental work taking place at Rainbow Babies & Children’s Hospital (RB&C).

She also laid out a very purposeful and focused visit to explore areas we do not frequently address in our travels. While RB&C is a leading children’s hospital and a national leader on many fronts in pediatric practices, Mary Ann wanted to share the efforts focused on the person in the care experience and the psychosocial aspects that can have great influence on the experience of patients and families.

This awareness, of the human needs of those receiving care, is central to all we have seen underlining excellence in patient experience. While there is great complexity in healthcare, it remains grounded in the “simple” reality that in healthcare we are human beings caring for human beings. The paradox here is that in this simple notion, we may face the greatest complexity of all. For with this focus, we must honor and respect every individual’s needs and desires (within reason). In doing so, we can set the foundation for strong and lasting success.

Spirituality with a Twist

I started my visit being greeted in the lobby by Mary Ann, Nancy Lynch, Spiritual Care Director and her warm and welcoming companion Kayla, RB&C’s dog-in-residence. A five-year-old retriever mix, Kayla services as Nancy’s collaborator on a journey to help people in the facility cope with the various situations they face.

The critical nature of Nancy’s role is not in who or what she represents, but in the “how” of what she does. She laid out the essence of her role beautifully as “helping people name and claim their beliefs about how life is ordered.” In a facility such as RB&C that can encompass both joyful and tearful moments, Nancy sees her role as to “walk with people when their world is shaking.”

Nancy applies narrative therapy to her work, working to understand the story behind the people in the facility with questions such as “so what brought you hear?” or even simple questions such as “what’s on your mind now?” The key in touching the spiritual side “is much more than a religiously related experience” she shared, to one in which is focused on helping people work through their own thoughts, struggle with their own issues and “feel a sense of control and hope” in times when that may be hard or even when they could be questioning their faith itself.

The power of this type of engagement is tangible as it provides a means for people to relate and share their inner most feelings and fears, while honoring each individual where they are. In speaking with Nancy and Mary Ann it was clear how essential this was to the day-to-day practice in the facility. It was important to acknowledge the people in their midst.

In fact as we sat at our table in the atrium, Kayla resting calmly at our feet, a gentleman approached us. You could tell he seemed a little distracted, even distraught, as he approached Nancy and Kayla. “You may not remember me,” he said, “but you visited our daughter the last time she was here. She is now in the PICU and I know she would love to see you and Kayla again if you can stop by.” In this moment of clear concern, I saw a father show a glimmer of relief and a belief in what could be done for his child even in extremely scary times. In that encounter, the power of a focus on the patient and family experience was exemplified.

Nancy added that Kayla has served a significant role in many situations, providing an outlet for people to open up, express themselves or even find moments of comfort. As equally important, this outlet is not only for those visiting the facility, but for those who work there as well. Kayla and the other members of the Pet Pal team provide incredible opportunities for relief and release, bringing smiles in moments of tears, breath in moments when the air seems to be sucked away.

The role of spiritual care is truly about caring for the whole person in our midst and at RB&C they have ensured they are actively doing this for their caregivers as well. By offering learning sessions that touch on the personal aspects of the delivery of care, from resilience to compassion fatigue to bereavement, honoring people where they are clearly is not only central to the positive experience efforts at RB&C, but is a serious consideration for all committed to doing this work.

A Special Gateway to our Hearts and Thoughts

In seeing Kayla in action as we walked the corridors, I was introduced to the extensive and leading pet therapy program developed in the University Hospitals system overall and central to the work at RB&C. We met with Barbara Nalette, Director, Volunteer and Reception Services UH Case Medical Center, who provided an overview to the animal assisted activity at the facility, and the model pet therapy program they have developed.

From what was once seen as unthinkable in the sterile hospital environment, pet therapy is being seen in more and more healthcare facilities. It has moved from a nice idea to an integral and evidence-based practice as part of healing and therapy overall. Beyond the warm smiles these animals bring to people, these animals create openings for engagement and conversation. As Barb shared, “they bring normal into what is often unusual or abnormal for people when they are in the hospital.”

The pets at UH are primarily dogs, almost 130 of them. They all have trading cards, are certified and pass stringent behavioral screening and training. In addition to the canines is one pet by the name of Petie …the pony. Yes a pony comes in on a regular basis for visits, walking the halls, going nose to nose with patients and bringing a sense of joy and bewilderment to what often can be an environment void of that in healthcare.

These engagements with pets help get back to the roots of who is in the facility. Especially in a children’s hospital environment where these young people are often faced with significant life events and are forced to face realities many of us may never have, these pet encounters from Kayla to Petie help remind and reinforce that these are still children with hopes and dreams, inspirations and imaginations. This is touching our humanness at its essence.

Barb shared a story that captured the powerful essence of these encounters. There was a boy, angry by his situation, maybe even angry with his family and care team for having to be where he was. He sat curled up in his bed surrounded by his stuffed animals, room dark, he quiet and sullen, not wanting to interact unless absolutely necessary. That day two dogs and their volunteer owners were rounding and came to the door to see if this boy wanted to see the dogs. His head perked up a bit and then he saw the dogs and started to beam, his chin came up, a smile painted his face and even a giggle came out. These two dogs looked just like two of the stuffed animal dogs protecting him in his bed. It was as if they came to life for this boy, and there, in their liveliness, so too did this boy, laughing, interacting and bringing tears to his family and caregivers alike.

Again there are many pathways to the human heart and soul and while we often overlook them in the care encounter they are still there sometimes buried or dormant, sometimes looking for a way to just be heard or expressed. That day and in many other situations like that, the person being cared for was brought out, acknowledged and celebrated.

Connecting with People Where They Are

Speaking of celebration and acknowledgement, I had a chance to meet the team of PCCTV (Pediatric Closed Circuit Television). This team of three people has a unique role of providing not only support and direction for the closed circuit system delivering in room entertainment, but they also bring a powerful creativity in finding new content to engage and meet the needs of patients and families throughout the facility.

They create video shorts introducing team members, produce informative segments, engage in graphic design, and a wide swath of creative support with a focus on patient and family engagement. This is best exemplified in the facility-wide games they offer and host including Bingo and Swingo (a medical matching game). These two interactive games involve both direct and in-room participation across the facility and results in those playing even having the chance to win prizes.

While the use of interactive systems is a growing part of the healthcare landscape, the unique nature of the PCCTV team is something other organizations could take advantage of. By having in house experts to connect and communicate in new media and through other engaging means, the efforts at RB&C can truly connect with people where they are.

Finding Peace in times of Unease

In the midst of all that takes place in a facility such as RB&C emotion and energy both run high and are expended regularly. From meeting people where they are, there is also a need to provide people a place to “escape”. As in other pediatrics facilities we have visited, RB&C too offers a great example of providing a place for family respite. Located near the PICU/NICU areas of the hospital, the Ronald McDonald Family Room offers a place of relaxation, rest and replenishment.

Led by volunteer turned Family Room Coordinator, Melissa McRae, and a team of incredible volunteers provide this space of respite. The room offers comfortable seating, places for siblings to play, break areas and complimentary meals and even a place where family members can do the laundry. In an environment that can drain you, this small oasis is a family only location to regain individual strength. These rooms represent the importance of caring for the whole person and in the children’s hospital setting reinforce the integral role family members play in the care experience.

Caring for the Whole Person

I ended my visit at RB&C with Nancy Seeger, Health Librarian, Shari Racut, Manger, Family & Child Life Services and Catherine Cashin, Child Life Specialist. My time with this part of the team covered a broad range of topics. Nancy shared the incredible breadth of resources available from the Family Resource Center, with books for both children and parents to kindles and laptops that can be checked out for work and study purposes. As librarian, Nancy also spends a great deal of her time helping patients and families find needed information about health issues and addressing other informational questions.

To accommodate these requests, she even created “infoscripts”, a form of prescription pad that physicians and others can use. With these information searches she can create full information packets to help inform patients and families on a range of content. With the infoscripts she can also keep physicians in the loop on the information she is sharing so they are aware what their patients are exploring.

With its placement near the entrance lobby to RB&C, the Family Resource Center is positioned to be an active hub for supporting patients and families on their journey. It not only provides resources, but also adds to the normalcy people search for in the healthcare experience. In fact, while in the center, a mother of patient stopped by, not for her child, but for some reading for herself. The Family Resource Center truly creates another physical space that provides for caring for the whole person and the whole family.

The offerings of the Family Resource Center are complemented by the extensive child life team in place at RB&C. In previous children’s hospital visits I have written about the role of child life and how it is integral to the efforts of caring for patients and families. The takeaway from my conversation with Shari and Catherine on this visit was a broader awareness of the true scope of work child life can and does encompass and the passion with which these committed healthcare workers tackle the issues they face.

This was exemplified in Catherine’s story, who after a long career in healthcare as clinical educator and other roles, found her true passion in child life, in so much as she reeducated herself for this next stage in her career. Her passion was palpable and her companion, not a dog, but an incredibly friendly blue puppet Buddy also welcomed me to RB&C.

The Family & Child Life Services team, as Shari shared in telling me the story of a patient named Greg, provides support and guidance, engagement and information. They are not only Child Life Specialists, but also include art and music therapists, they are information seekers and hand holders. They in many ways make the experience not only palpable, but I dare say magical. You could see it in Catherine’s eyes as Buddy’s voice appeared in letting me know how proud he was to help children and families at RB&C.

This team too, while not direct clinicians, touched the very heart of the healthcare experience. That when we are aware of and care for the whole person and for the patient and family in our midst, great things can happen. It was only fitting that as we wrapped up the conversation we collectively reflected on what the adult acute care setting might be like if individuals with these same roles were there to make this kind of difference. I would dare say and would challenge any organization to take this first step…do we invest in having care or life specialists in all of our care settings to support patients and families? While an investment in infrastructure and people resources, this could ultimately impact the care, well being and outcomes of all we serve.

Acknowledging our Humanness

While we can often get lost in the clinical side of care in our work, we should never lose sight of the human beings who are on the receiving end of care. My visit to RB&C was designed beautifully to reinforce this point. While they tackle a list of other efforts and actions to positively impact the patients and families they serve, they consciously gave us all a gift. We must acknowledge the humanness of all in the healthcare encounter and that of not only those receiving care, but those working hard every day to deliver on it as well.

Patient and family experience is a complex and significant opportunity in healthcare today and my visit to RB&C helped reinforce a key message central to success in this effort. With a focus on an integrated approach, a strong grounding in teamwork, and a commitment to helping provide normalcy for those having to navigate the unsettling nature of healthcare we can work to support the whole person in the healthcare experience. Doing this well – caring for general well being – is one of our most important objectives aside from providing for the health of those in our care. That is honoring the person in our midst and all they bring with them. The team at Rainbow Babies & Children’s exemplifies this in all they do every day.

Special thanks to Mary Ann Dragon and the entire team at Rainbow Babies & Children’s Hospital for sharing a piece of all they do every day in caring for others.