Case Study

Health Environments Research &DesignJournal 2016, Vol. 9(2) 130-146 Designing With Empathy: ª The Author(s) 2015 Reprints and permission: sagepub.com/journalsPermissions.nav Humanizing Narratives DOI: 10.1177/1937586715592633 for Inspired Healthcare herd.sagepub.com Experiences

Candy Carmel-Gilfilen, MArch1, and Margaret Portillo, PhD1

Abstract Objective: can and should play a critical role in shaping a holistic healthcare experience by creating empathetic solutions that foster a culture of care for patients, families, and staff. Using narrative inquiry as a , this case study shares strategies for promoting empathy. Back- ground: Designing for patient-centered care infuses empathy into the creative process. Narrative inquiry offers a methodology to think about and create empathetic design that enhances awareness, responsiveness, and accountability. Methods: This article shares discoveries from a studio on empathetic design within an outpatient cancer care center. The studio engaged students in narrative techniques throughout the design process by incorporating aural, visual, and written storytelling. Benchmarking, observations, and interviews were merged with data drawn from scholarly evidence- based design literature reviews. Results: Using an empathy-focused design process not only moti- vated students to be more engaged in the project but facilitated the generation of fresh and original ideas. Design solutions were innovative and impactful in supporting the whole person. Similarities as well as differences defined empathetic cancer care across projects and embodied concepts of design empowerment, design for the whole person, and design for healing. Conclusions: By becoming more conscious of empathy, those who create healthcare environments can better connect holistically to the user to take an experiential approach to design. Explicitly developing a mind-set that raises empathy to the forefront of the design process offers a breakthrough in that bridges the gap between what might be defined as ‘‘good design’’ and patient-centered care.

Keywords academic research, case study, ambulatory care center, cancer center, evidence-based design, , patient-centered care, qualitative research, design methodology

Purpose Empathetic design, by definition, is life affirming. By centering on patients, engaged family mem- 1 University of Florida, Gainesville, FL, USA bers, and caregivers, empathetic design contributes Corresponding Author: to a holistic culture of care. We argue that narrative Candy Carmel-Gilfilen, MArch, University of Florida, 334 inquiry—giving insight into the thoughts, feelings, Building, Gainesville, FL 32611, USA. and experiences of others—can and should inform Email: [email protected] Carmel-Gilfilen and Portillo 131 the design process and brings design solutions into in a body cast wills himself to be at his daughter’s close alignment with the physical, emotional, wedding scheduled a few days later. A man spends spiritual, and interpersonal needs of patients and 3 hr in a waiting room. A new mother in a neonatal caregivers. Design, guided by personal narratives, intensive care unit wonders when she will be able offers a myriad of opportunities to inspire the to take her daughter home. A doctor reflects on healthcare experience. being cancer free for 7 years. The viewing audi- ence of Empathy sees the thoughts and feelings We argue that narrative inquiry—giving of patients, family members, and caregivers. insight into the thoughts, feelings, and Patients become more than ‘‘end users.’’ They are experiences of others—can and should mothers, fathers, sons, husbands, or wives. They inform the design process and brings are single, married, or divorced. Their stories design solutions into close alignment with involve receiving life-altering diagnosis, tolerating the physical, emotional, spiritual, and the prosaic frustrations of testing and receiving interpersonal needs of patients and treatment, and experiencing a moment of happi- caregivers. ness or feelings of relief. As the inner worlds of the patients, family This article shares a new way of designing members, and caregivers build to a crescendo, empathetically for the whole person using narra- empathy ends with a single question, ‘‘If you tive inquiry. This approach offers a unique vehi- could stand in someone else’s shoes ... Hear cle to heighten compassion for people that can what they hear. See what they see. Feel what they be grounded in evidence-based design (EBD) feel. Would you treat them differently?’’ principles, thus linking the subjective personal Clearly the answer is yes and ‘‘empathy takes experience with objective ways of knowing. This on a new dimension in a hospital, where there is case study focuses on designing an outpatient the push and pull of health and sickness, and cancer care center using a narrative methodology where giving and receiving care happens every within a senior- design studio. Within this day’’ (Cleveland Clinic, 2014). Designers and context, narrative inquiry became a vehicle for design educators play a critical role in creating students to explore multiple dimensions of empa- empathetic healthcare environments. Empathy: thetic design from patient, family, and staff per- Exploring Human Connection inspired us and spectives. This process involved exploring end reinforced the power of narratives to capture user experiences through three modes of story- human experience in ways that could be particu- telling (i.e., verbal, written, and visual) to inspire larly useful for designing interior spaces (Dohr & design thinking. Original narratives, told in first Portillo, 2011; Portillo, 2000). person, situated the members of the design jury The project profiled in this article began with a within the ambulatory cancer care experience. design charrette2 where students viewed Empa- The award-winning results of this experience, thy: Exploring Human Connection and then were we argue, invite a new design process, one that asked to consider the following questions: ‘‘If you integrates narrative inquiry with EBD. could know what patients and staff were seeing, thinking, and feeling, would you design their spaces differently?’’ Students had a 48-hr period Background and Context to explore responses to these questions by reflect- Cleveland Clinic’s1 YouTube 4.32-min video ing on ways healthcare influences specific patient Empathy: Exploring Human Connection has gen- or caregiver needs. Students were asked to pres- erated wide attention beyond the healthcare indus- ent their ideas through the words and images of try since its release on February 27, 2013, and has a story. Ideas from the , shared with been viewed over 2 million times. A montage fea- healthcare and design specialists, showed imagi- turing over two dozen fleeting profiles captures a nation. Far from seeming forced, the students’ range of hospital experiences through deeply per- first attempt at design storytelling seemed ener- sonal and impactful vignettes. An accident victim gizing. The narrative structure not only allowed 132 Health Environments Research & Design Journal 9(2) students to enter into the world of patients, family a tool for inspiring creative ideas during the members, and caregivers but also helped them design process, but during the midpoint and final conceptualize the experience of moving through project reviews each team shared their , paralleling the narrative unfolding of a using first-person voice-overs narrating the story’s beginning, middle, and end point. This experiences with the space as corresponding temporal focus encouraged the active consider- images of the design appeared to the design jury. ation of movement through space in ways that Narratives offered a new way to communicate seemed to support patient-centered design. design ideas. Design storytelling engaged the out- side specialists who responded to the student The narrative structure not only work. The end goal of the narrative was not to allowed students to enter into the world write publishable but rather authentic stories rein- of patients, family members, and forced by EBD literature. Again the ‘‘first-per- caregivers but also helped them son’’ narrative humanized the design and conceptualize the experience of moving seemed to motivate the student teams and through space, paralleling the narrative heighten empathy in ways that led to sensitively unfolding of a story’s beginning, middle, designed, patient-centered spaces. and end point. This temporal focus encouraged the active consideration of movement through space in ways that Empathetic Design seemed to support patient-centered Empathy is well established as a critical charac- design. teristic for healthcare providers (Holloway & The creation of reality-based narratives Freshwater, 2007) but is a habit of mind that also necessitated secondary research and information should be established as a critical trait for the gathering throughout the course of the project. To . Tim Brown, affiliated with IDEO,3 collect story content, students talked with former defines design thinking as involving empathy, cancer survivors, family members, and caregivers integrative thinking, optimism, experimentalism, and engaged with cancer patients and other mem- and collaboration. According to Brown (2008), bers of the community in a local arts-in-medicine ‘‘By taking a ‘people first’ approach, design thin- program. Visiting cancer care centers and other kers can imagine solutions that are inherently related healthcare facilities led to a better aware- desirable and meet explicit or latent needs. Great ness of precedents and generated fresh insights. design thinkers observe the world in minute Another indispensable source of material (and detail. They notice things that others do not and potential for story content) came from students use their insights to inspire innovation’’ (p. 3). gaining a working knowledge of related scholarly This detailed attention to the human experience literature. Experiential learning coupled with supports good design across market sectors but empirical knowledge informed the ensuing narra- is particularly essential in the context of health- tives and the design process. care design. Skills in listening and observation Over the course of 3 months, students read and encourage empathy and human-centered design, discussed stories from Rachel Naomi Remen’s ‘‘By empathic design, designers attempt to get Kitchen Table Wisdom (2006) and crafted their closer to the lives and experience of (putative, own narratives. These stories captured the varied potential or future) users, in order to increase the perspectives of those seeking treatment and offer- likelihood that the product or service designed ing care in their designed spaces. Individual meets the user’s needs’’ (Kouprie & Sleewijk, responses and perceptions were also anchored in 2009, pp. 437–438). However, it may be impor- empirical findings. EBD became more compel- tant to reconsider the use of the term end user that ling to students when coupled with the more sub- implicitly implies a generic quality stemming jective narratives of patient and caregiver from the language of technology and a postposi- experiences. Not only did narrative inquiry offer tivistic worldview (Beecher, 2015). Nevertheless, Carmel-Gilfilen and Portillo 133 the idea of end users does acknowledge a human- their own health trajectory. In fact, the Association of design connection (Rubin, 1984; Sanders, 2002). American Medical Colleges cites physicians’ under- User-centered design optimizes products, for standing of a patient’s perspective and ability to example, around human wants and needs, rather express caring, concern, and empathy as educational than forcing people to accommodate or ‘‘work- objectives (Hojat et al., 2002). Informed dialogue around’’ the product’s design. Shifting one’s per- among leaders in design practice, education, and spective to consider other viewpoints often industry on the qualities needed by the next gen- involves an iterative cycle of creating, testing, and eration of interior designers acknowledges the evolving design concepts. Leonard and Rayport importance of empathy (Council for Interior (1997) discussed the five steps to empathetic design Design Accreditation, 2010). Further human- as observation, capture data, reflection and analy- centered design is positioned prominently for sis, for solutions, and developing inclusion in the 2017 Council of Interior Design prototypes. This process positions designers to cre- Accreditation standards. ate intuitive, sustainable, and creative outcomes. Today reality is that design reinforces connec- Empathetic design has been studied primarily in the tivity and collaboration. Interestingly, empathy is areas of (Koskinen & Battarbee, antithetical to separateness and isolation (Bolog- 2003), (Garrett, 2010), and human nini, 1997). This is illustrated in the healthcare factors and (Kouprie & Sleewijk, context, ‘‘Emotionally engaged physicians com- 2009); however, we see great untapped potential municate more effectively, decreasing patient in the design of healthcare environments. anxiety and improving patients’ coping, leading to better outcomes’’ (Halpern, 2007, p. 696) and ultimately engagement supports the continuum Empathy in Healthcare of care (Press Ganey, 2007). Scholarly literature including personality theory, social psychology, Empathy in the larger healthcare context influ- psychotherapy, psychoanalysis, and practitioner– ences the quality of care, showing improved patient communication all acknowledge the im- patient satisfaction (Kim, Kaplowitz, & Johnston, portance of empathetic processes (Squier, 1990). 2004), clinical outcomes (Nightingale, Yarnold, Research also maintains that physicians are more & Greenberg, 1991) as well as reduced malpractice effective healers and experience increased levels of suits (Virshup, Oppenberg, & Coleman, 1999) and personal satisfaction when they are empathetic to medical errors (Haslam, 2007). According to the Institute for Patient- and Family-Centered Care their patients (Larson, 2005). Hojat, Louis, Maio, and Gonnella (2013) underscore empathy as a core (n.d.): competency for physicians and Larson (2005) There is an increasing body of evidence that the describes how empathy creates a cycle of healing. experience of care is important, that it matters how healthcare practitioners communicate with patient Empathy makes patients more forthcoming about and families, and that the active participation of their symptoms and concerns, thus, facilitating patients and family members in clinical care and medical information gathering, which, in turn, policy and program development will enhance yields more accurate diagnosis and better care, outcomes. helps patients regain autonomy and participate in their therapy by increasing self-efficacy, and leads Health professionals including physicians, nurses, to therapeutic interactions that directly affect technicians, therapists, social workers, and others patient recovery. (Larson, 2005, p. 1110) have the opportunity to be empathetic during each clinical encounter. Caregivers can express empathy Based on three decades of applied research, by listening attentively or talking honestly with com- Planetree4 has identified four types of care that opti- passion to their patients. Empathy not only makes mize the healthcare experience: care that is rooted staff more effective but enables patients to gain con- in kindness, compassion, and dignity; care that fidence and often become more proactive concerning recognizes the role of the patient’s family; care 134 Health Environments Research & Design Journal 9(2) that understands the influence of the physical Freshwater, 2007, p. 82). And as such the type of environment in healing; and care that responds stories, crafted in our healthcare studio, infused to the patient’s psychological, emotional, spiri- factual information with human emotions. tual, and social needs (Frampton, Charmel, & Tension points occur internally and between Guastello, 2013). This philosophy becomes a characters. Further in the healthcare context, con- reality in many ways. Patient-centered care ele- flict and complex trade-offs can be acknowledged vates personal interaction; supports patient edu- and considered throughout the research and writ- cation, choice, and responsibility; engages ing of narratives. According to Jerome Brunner family involvement; includes a holistic approach (2003), narrative inquiry is an instrument not so to healing and the impact of food, nutrition, and much for solving problems but for finding prob- the dining environment; and considers the overall lems. Stories celebrate detail and nuance. Stu- community (Planetree, 2014). The Planetree des- dents and practitioners can turn to well-crafted ignation, found in healthcare organizations narratives—shared orally, visually, and through worldwide, explicitly recognizes best practices writing—to communicate the power of interior in patient-centered care. Empathy is at the core design (Dohr & Portillo, 2011; Ganoe, 1999; of Planetree and arguably should be at the heart Portillo, 2000) and encourage the development of and practice. of whole-person environments supported by the unifying language of stories (Danko et al., 2006). An example of empathy in healthcare design is Narrative Inquiry found in the book The Power of Pro Bono that features high-impact projects serving the public Design Thinking for Interiors (Dohr & Portillo, good (Cary, 2010). The ‘‘Adopt A Room’’ proj- 2011) presents real-life narratives that not only ect, connected Perkins þ Will, The University reveal diverse reactions to designed environments of Minnesota Children’s Hospital, and a client but show the power of interior spaces in the lives who personally experienced the impact of cancer. of individuals: The client, Brian Schepperle, shared his rationale Studying memorable design carefully leads to a for spearheading this project, ‘‘My family spent fuller appreciation of interior environments. People, ten years in and out of hospitals caring for my as individuals, as groups, as societies, or across cul- daughter who suffered from acute lymphoblastic tures, exhibit behaviors and values that connect to leukemia. During our treatment in Southern Cali- spaces and objects within them. When we study fornia, the Midwest, and on the East Coast, we these connections with care, a fuller appreciation found the same thing: rooms that were small and of designing interiors emerges and society benefits. not set up for long-term stays ... Fighting a dis- (Dohr & Portillo, 2011, p. 22) ease is about more than the quality of care; it’s also about environment.’’ He founded the founda- The rationale for using narrative inquiry as a tion on the belief that ‘‘While we can’t control the method for revealing insights into human–envi- illness, we can control the environment’’ (p. 176). ronment transactions is further supported by evi- Ironically, David Millington, a member of the dence on student learning outcomes relating to Perkins þ Will team, also had lost a child to can- engagement of narratives in the design process cer. Together the designer and client focused on in ways that heighten self-reflection, acknowl- designing a hospital room to support pediatric edge diverse perspectives, and encourage design patients, reinforcing the primacy of empathetic for the whole person (Danko, Meneely, & Por- design. This prototype has inspired countless tillo, 2006). designers and clients. Further narrative inquiry integrates subjective Narrative inquiry allows entre´e into thoughts, with objective, recognizing individual percep- feelings, inner motivations, conflicts, and chal- tions, feelings, and facts defining a context. lenges. Stories revealed the challenges faced by ‘‘Stories are never just representations of experi- patients, their families, and caregivers. Processes ence, they are also interpretations’’ (Holloway & for incorporating design thinking into studio Carmel-Gilfilen and Portillo 135

Table 1. Project Engagement and Development.

Engaged Experts

Member Title/Company Doug Bauzin, EDAC Healthcare Research Lead, Herman Miller Kristen Bennett, LEED AP, EDAC Designer-Environments, Herman Miller Anthony Rotman Manager, Design Exploration, Herman Miller Janet Zeigler, RN, MN, MBA, EDAC Director of Healthcare Consulting, Herman Miller

Review Process

Review Design Jury Charrette Review (3) Project Team Mid-Point Review (5) Project Team Sales and Marketing Manager Final Review (12) Project Team Sales and Marketing Manager Healthcare Sales Lead Application Strategist Chief Design Officer Healthcare Designer, NCIDQ Director, Arts in Medicine Healthcare Facility Planner Design Researcher

Site Visits

Facility Location University of Florida Health: Cancer Hospital Gainesville, FL Cancer Specialists of North Florida: Baptist Downtown Jacksonville, FL and St. Vincent’s Gresham, Smith and Partners Jacksonville, FL University of Chicago: Center for Care and Discovery Chicago, IL Herman Miller Headquarters Holland, MI Herman Miller Showroom: Merchandise Mart Chicago, IL

learning can offer models that can be replicated Method: Narrative in Design and expanded in other healthcare design applica- To explore empathy in the healthcare context, this tions. Stories, such as Adopt A Room, we believe case study involved designing prototypes for an become even more compelling when grounded in outpatient cancer care facility using a process of empirically based principles and practices. narrative inquiry. Further, EBD principles and Narrative inquiry allows entre´e into empathy for patients, family members, and staff thoughts, feelings, inner motivations, informed the design solutions. A unique aspect conflicts, and challenges. of the project was the support provided by Her- man Miller, Inc., an industry leader in healthcare Processes for incorporating design design. This support gave the studio access to thinking into studio learning can offer design and healthcare specialists to engage with models that can be replicated and the students. This sponsorship facilitated behind the scenes tours in their manufacturing facility, expanded in other healthcare design and also provided the studio with an opportunity applications. to learn from their product prototyping process, 136 Health Environments Research & Design Journal 9(2) offering compelling insights on the role of benchmarking, observations, and interviews gather- research in design (refer to Table 1). ing firsthand experiences from cancer patients and The project involved designing a two-story survivors. Teams also had at least one interview prototype facility of approximately 46,000 square with a nurse, resident, or physician who specialized feet and focused on designing public areas includ- in cancer care and were willing to share their profes- ing the lobby, public restrooms, a resource center, sional experiences with patients in general. and pharmacy; clinical areas for radiation and In addition, the students benchmarked health- infusion along with their support spaces; and staff care facilities locally and had the opportunity to areas including offices, conferencing spaces, and spend time in a nationally recognized facility. They break areas. In addition, the program specifically also toured Herman Miller’s headquarters, manu- required empathetic design be considered but did facturing site, and regional healthcare showroom not explicitly prescribe how that would be accom- where they experienced, tested, and evaluated a plished. Empathy was interpreted differently by nursing station prototype and healthcare furniture each team and offered amenities such as a cafe´, designed for a range of patients. Together, these healing gardens, spaces for alternative medicine, experiences informed the narrative created by the and those that supported spirituality as well as student and their solutions. Further, feedback from wellness and advocacy. specialists in , practice, and medi- The project was completed as part of an interior cine promoted the intellectual and emotional design studio course at University of Florida.5 growth, necessary for the cultivation of empathy. Eighteen students participated in the 12-week Coupled with EBD research and application, project during the fall semester of 2013. The narrative techniques were incorporated into the majority of participants in the studio were seniors design process. Students were required to read in the interior design program, but two students first-person patient stories and experiment with were in the Master of Interior Design program and crafting narrative dialogue to capture emotions two others were exchange students also in the final and life circumstances. This not only facilitated year of their respective degree program.6 This whole-person design but also enhanced the teams’ group had a similar level of design experience and ability to communicate their design intent. Narra- had either completed an internship and/or design- tive inquiry forced the students to design beyond related study abroad experience before enrolling visual or purely aesthetic dimensions of space to in the studio. We created small teams of four or consider the smells, sounds, and movements five students to facilitate collaboration and com- defining the healthcare experience. As mentioned pletion of the project. The studio focus on ambula- earlier, a project charrette immediately immersed tory cancer care reflected the wide segment of the the student teams into crafting stories about the population that is impacted by cancer; over 90% of cancer experience from the vantage points of cancer treatments has moved to outpatient set- patients, family members, and caregivers within tings. Increasingly cancer care facilities have a healthcare environment. Later in the project, become more patient centered and open to less tra- we offered an intensive narrative workshop with ditional spaces. preparation and follow-up assignments allowing The studio project involved iterative phases dedi- time to read, reflect on, analyze, and experiment cated to research, narrative inquiry, and collabora- with narrative techniques to develop the art and tion. First, student teams focused their efforts on craft of storytelling. These experiences helped the extant literature and gathered over 75 peer- hone skills to develop story lines, visually, orally, reviewed articles from scholarly journals, including and in writing. Students also turned to storytelling Health Environments Research and Design Jour- when sharing their design solutions (at midpoint nal, Journal of Interior Design, Environment and and final reviews). This was accomplished Behavior,andJournal of Nursing Administration. through taped voice-overs representing first per- The literature addressed issues relating to empathy, son accounts of patients, family members, and cancer care, the patient experience, caregiver needs, staff describing their feelings and sensorial experi- and design factors. Next, students engaged in ences within the proposed cancer care center. Carmel-Gilfilen and Portillo 137

The storytelling continued through the devel- inquiry. When students began to put themselves opment of ibooks7 documenting process and by in the position of the patients, staff, and family offering a vehicle to engage with the jury. The members, truly understanding what they thought, storytelling continued through the development felt, and saw, they were able to connect on a deep of ibooks documenting the process and offering level. Designs framed in the context of empirical a vehicle to engage with the jury: a flexible tool research provided the opportunity to buttress nar- for focusing in on aspects of the process or prod- ratives of compelling individual experience with uct. Bringing to life cancer experiences, narrative EBD principles. Situating narratives in research inquiry surfaced patient, family, and caregiver fully supported patient-centered care. stresses, demands, and sources of fatigue and led ...the design process was distinctive in to ideas to offer support for these issues through the interior spaces. Reflecting on the process, one that it involved both EBD and narrative student described her experience with narratives: inquiry. A close examination of design solutions also Bringing to life cancer experiences, revealed explicit people-and-place-based empathy narrative inquiry surfaced patient, dimensions in the design prototypes. The qualities family, and caregiver stresses, demands, of these spaces relied upon knowing and feeling the and sources of fatigue and led to ideas to physical, psychological, spiritual, and social needs offer support for these issues through the of people. Specific zones supported engagement interior spaces. with others by containing opportunities for commu- Without delving into the concept of empathy and nity outreach, allowing stress release and creative really getting into the mind-set of users through var- self-expression through arts-based immersion, and ious methods including narrative we would not have creating an environment embodying a holistic come out with the same outcomes. Every group approach to care. Opportunities for rethinking the thought from the user’s point of view and by inte- patient and staff experiences surfaced via education grating empathy we created innovative spaces. and engagement spaces, waiting areas, art therapy spaces, and advocacy rooms. Healing zones gave patients opportunities for choice and control during Results infusion treatments. Other areas offered respite, and some projects also incorporated opportunities for An empathy-focused design process not only moti- alternative medicine. Specialized features included vated students to become enthused about the pos- healing gardens, spiritual and meditation spaces, sibilities and potential in the healthcare design and diverse treatment areas. arena but inspired fresh and original ideas for out- Similarities as well as unique approaches to patient cancer care. Design solutions were recog- empathy will be compared in three team solu- nized by the studio’s juries as innovative and tions: empathy is defined as (1) patient empower- impactful and most importantly as supporting the ment; (2) whole person; and (3) healing, respite, whole person. Recognizing that people with lives and restoration. However, each team employed full of challenges and demands used the spaces, narratives as a tool to find and develop their illustrated a commitment to EBD, and incorpo- respective themes. Stories of personal empower- rated narrative inquiry and storytelling as part of ment, whole-person design, and restoration pro- the design process communication strategy. The cesses also connected to EBD findings and studio outcomes support an empathetic model that information gathered through benchmarking, is increasingly appreciated by a widening circle of observations, and interviews. healthcare leaders. The award-winning results8 of this project inspired imaginative solutions. So what was unique about this approach? Design Empowerment First of all, the design process was distinctive This team focused on designing a cancer care in that it involved both EBD and narrative facility where empowering the patient was a 138 Health Environments Research & Design Journal 9(2)

Figure 1. Public empowerment zone. paramount concern. The question became how do example, this represents a safe haven space for a we support the inner motivation and strength of the female patient, who has lost her hair during chemo- patient population? The look and feel of the space therapy, to remove her headscarf and still feel com- immediately runs counter to typical treatment cen- fortable. Empowerment acknowledges that cancer ters. There are no waiting areas. Instead, patients, patients are people who live a full life outside of friends, and family are welcomed into empower- their treatment experience. These design moves ment zones designed to channel energy from align with research recommendations for alleviat- supporting communities or engage the inner resour- ing illness-related stress and depression by offering cefulness and resiliency of patients and other stake- social support opportunities for patients and their holders. For example, the public empowerment family members and friends (Ulrich et al., 2008). space illustrated in Figure 1 welcomes current Over the course of design development, this par- patients, survivors, and advocates into an open ticular team struggled to develop the ideas of environment with a central hub with resources and empowerment spaces while meeting specified activities centered on cancer advocacy and educa- design criteria including square footage, functional tion. These areas exude with positive sensory sti- requirements as well as codes and guidelines muli (e.g., fresh baked cookies at the reception requirements. At the midpoint review, several jur- desk or large-scale, interactive touch screens to ors wanted to see stronger development of the path- locate 5K runs for cancer research). As visitors ways from the more public empowerment zones to move vertically in the facility toward the treatment the clinical treatment areas, ‘‘The message behind areas, they enter into the private empowerment empowerment is clear ... however too much space zone illustrated in Figure 2. This space offers pri- is accounted for [in the educational and resource vate areas for prayer, personal reflection, or media- areas], the spaces seem segregated from one tion and also includes more intimate opportunities another, and there is no link between the public and for small group socialization. Opportunities abound private empowerment spaces’’ (Juror, personal for thinking, relaxing, reading, or enjoying nature. communication, October 23, 2013). This insight Patients can be less inhibited in these spaces. For prompted a complete rethinking of the navigation Carmel-Gilfilen and Portillo 139

Figure 2. Private empowerment zone. throughout the facility, including shifting specific through access to cutting-edge cancer research and programmatic elements to different floors to treatment options and opportunities for outreach strengthen the concept of empowerment through a (shown in Figure 3). The technology-infused spaces more equitable allocation of space and better devel- also encouraged patients and their families to inter- opment of transitional areas. In addition, the team act virtually with the global cancer community, focused the narrative to better reflect the infusion offering another opportunity for empowerment. of empowerment throughout the prototype that ele- vated the patient experience. I don’t want to play victim to my cancer, I want to beat it. I proudly go into the advocacy center. I am over- The first time my wife and I walked into this whelmed with how many organizations and events lobby she gasped. It was the sound of relief. are dedicated to the same thing. My sister joins in the There are no corridors of white walls, scuffed rally against breast cancer and signs up for a breast flooring or people scurrying frantically in scrubs cancer awareness walk on the spot. (See Figure 3.) to be found here. ... The receptionist is always welcoming with a smile on her face and a fresh A final example of empowerment is illustrated in batch of cookies on her desk. (See Figure 1.) the story wall shown in Figure 4, offering five mes- sages of peace and hope captured by the voices of I survived another treatment and my beautiful wife is cancer patients and survivors. Located adjacent to waiting for me in the living room ready with my the radiation treatment area, this wall provides a favorite snacks from the complementary snack bar. focal point with an emotional impact designed to I always feel like it is my goody bag after another inspire patients and staff with stories of unique successful treatment. This place is bustling with human experiences. Stories told through poignant doctors, patients, and their families. (See Figure 2.) images and words to engage and hopefully empower those who pass through this corridor. This design solution created advocacy spaces for engaging current patients and cancer survivors, I walk down the hall to my radiation treatment. I staff, as well as family, and community members have never liked the enclosure of hospital hallways. 140 Health Environments Research & Design Journal 9(2)

Figure 3. Advocacy center.

Figure 4. Story wall.

However, this one uplifts my spirits with real-life take the reins of their health care and wellness, survival stories. For the few minutes I am in that asserting their fitting place as a central member of awful machine, I will focus on thoughts on what the care team. (Frampton et al., 2013, p. 109) my survival story could be like. (See Figure 4.) Research illustrates that this type of patient appears The space was designed to energize and inspire: more likely to report higher satisfaction with their healthcare experience (Mosen et al., 2007). Oppor- Empowering patients with information shifts the tunities for choice and control also offer strategies traditional dynamic of the health care relationship for high-quality, high-value care that promotes con- wherein professionals are the active providers of tinuity of care (Frampton et al., 2013). These spe- information and care, and patients are consigned cial spaces supported learning about cutting-edge to the role of passive recipient. Activated patients trends in cancer care as well as opportunities to Carmel-Gilfilen and Portillo 141

Figure 5. Healing gardens. connect with the larger cancer network. Education linking these gardens was further reinforced and offered power as did community-building sup- articulated by changes in the flooring and ceiling ported by spaces replete with electronic resources treatment, optimizing wayfinding throughout the (e.g., online forums) and reference materials. Myr- facility. This investment acknowledged the body iad opportunities allowed patients to take control of of research that has linked exposure to nature to their illness. Designed spaces implicitly sanctioned reduced stress and increased restoration among patients and family members to actively learn about other positive health outcomes (Ulrich, 1991, and manage their cancer journey. At the heart ofthis 1999, 2008). design was knowledge and advocacy. Learning Throughout the development of the project, spaces also became social spaces where groups of this team emphasized not only the patient experi- patients and caregivers could explore cutting-edge ence but other stakeholders who needed consider- treatment protocols, learn from webinars, or find ation. At the midpoint review, jurors encouraged the right type of support group to better navigate the this group to continue exploring staff and family treatment and recovery process. For this team, perspectives (in addition to patient needs) and empowered patients and families could partner more fully develop these supporting narratives more effectively with caregivers ‘‘to beat cancer’’ vis-a`-vis the healing gardens. The response of the as a united team. team centered on creating an additional healing garden designed to support a wider net of for Healing needs, including a community cafe´ for staff, visi- tors, and patients that offered a fresh menu in a set- This team focused on telling the story of healing, ting welcoming conversation and socialization. a concept that is universally recognized. Princi- Further, the spaces designed specifically for staff ples of biophilia inspired the spaces to reflect respite were relocated to be adjacent to the healing qualities of solace and draw energy from the well- gardens. This offered another way of supporting spring of nature, which differed from the source the well-being of caregivers. The team’s narrative of inspiration from the last team. The design is was also broadened to include these additional user soft, embracing, and offers opportunities for quiet groups, strengthening the story of healing. reflection. The team’s overarching design goal The healing gardens also represented a valu- was to be able to see a healing garden from every able nexus to beauty and restoration (Frampton vantage point within the facility. As illustrated in et al., 2013). Again research indicates that design Figure 5, healing gardens were designed as three- directly impacts the patient and family healthcare dimensional pockets within the building. experience by influencing communication, satis- These gardens formed an intimate connection faction, and the overall continuum of care (Press with nature and represented water as a healing Ganey, 2007). ‘‘There is strong evidence that element (active, still, and dripping) to meet phys- design changes that make the environment more ical, emotional, and spiritual needs. Offering comfortable, aesthetically pleasing and informa- respite these gardens are visible from the main tive relieve stress among patients and increases lobby and public spaces; infusion and radiation satisfaction with the quality of care provided’’ treatment spaces; and staff, patient, and family (Ulrich, Zimring, Quan, Joseph, & Choudhary, respite areas. Additionally, the common path 2004, p. 25). 142 Health Environments Research & Design Journal 9(2)

flexibility of the space allows me to decide where I want to sit depending on whether I feel like socia- lizing or feel the need to be alone. (See Figure 6.)

Extending beyond function and , the spaces embodied a holistic approach to healing. Design decisions were supported by interviews with staff members who expressed the need for respite and recovery spaces that looked and felt differently from the typical break room. Staff wanted areas to decompress and mentally disen- gage briefly from the day’s activities. They needed spaces offering privacy and solace for the losses and patient setbacks that are the reality of Figure 6. Art therapy space. cancer care. The healing gardens were designed as an oasis for caregivers and clearly would My physical, emotional, and spiritual needs fluctu- become a gathering place for patients and fami- ate greatly and often cause frustration for myself, lies. Further, the distinct plant materials defining my friends and family, and my caregivers. ... See- each garden were designed as visual landmarks to ing the large garden when I enter makes me think support navigation throughout facility. back to when I received my terrifying diagnosis and how when I entered here for the first time it made my fears diminish. It embraces me with a welcom- Whole-Person Design ing feeling. (See Figure 5.) This team’s solution relates to the last example yet The team also created art therapy spaces offering brings in unique design attributes. The team was opportunities for self-expression and the ability to inspired by the journey of each cancer patient. The experience creative flow of the patients and fam- patient journey necessarily included supporting ily members (see Figure 6). These open flexible caregivers and often included family members and spaces encouraged socialization and created a friends who provided different sources of energy sense of community. In addition, this type of at various points of the treatment and healing pro- space is supported by research that relates posi- cess. This design driver focused on the connection tive distraction with decreased patient stress with caregivers and support providers. For exam- (Ulrich & Gilpin, 2003). ple, the team designed the treatment zones by cre- This concept was inspired by student engage- ating flexible private, semiprivate, and public ment with the local cancer center’s arts in medicine experiences that were tailored to the patient’s program where patients and others created together needs, mood, and preferences. across media and forms of expression from art mak- The private treatment option, illustrated in ing to yoga. This experience powerfully connected Figure 7, allowed for privacy and personalization students to a community of current and former can- while minimizing stress, enhancing comfort, and cer patients, family members, staff, and others from maintaining dignity. Full height partitions with the university and local community. This team was physical and acoustical separation between patients particularly influenced by their experience and a also provide ample space for an accompanying defining space within their ambulatory facility sup- friend or several family members. In addition, a ported healing through creative engagement. porch area with a view to nature was open and invited socialization, if desired. Semiprivate treat- As my sister leaves for her treatment, I take a seat in ment options, illustrated in Figure 8, provided some the art class to join in. It keeps me entertained; the privacy coupled with group support spaces. This sounds of laughter lift my spirits and give me a treatment option allowed for the continuation of sense of community and belonging. I notice the daily life beyond cancer care by providing work Carmel-Gilfilen and Portillo 143

were challenged to facilitate staff functioning within the treatment zones to better serve patients by removing the ‘‘work-arounds’’ that would inadver- tently cause caregiver frustration. The circulation in final prototype substantially improved as did the functionality of the spaces supporting each stake- holder group. The story was also refined to reflect these changes and provided an opportunity to con- nect with the designed spaces on a deeper level.

My treatment space has its own room with an indoor family porch where I can sit closer to the windows with my sister or even another patient. Figure 7. Private infusion treatment. There is also space to put my belongings and plug in my ipad. (See Figure 7.)

Sweetie, they even have a place over here for you to do your work. Through these long hours I hardly notice I am going through my treatment with this wonderful view and comfortable chair. It just feels so warm and inviting here. (See Figure 8.)

Treatment spaces illustrate opportunities for the design of the physical space to go beyond treating the symptoms to encompass a holistic model of care, one that offers choice and control. The design also recognizes the need to emphasize partnerships between patients, family members, and staff.

Health care that establishes a partnership among Figure 8. Semiprivate infusion treatment. practitioners, patient and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and that surfaces for writing or doing other kinds of work. patients have the education and support they require This was a request voiced in one of the family mem- to make decisions and participate in their own care. ber interviews. Finally, opportunities in the space (Institute of Medicine, 2001a, p. 127) could be found for providing outdoor treatment options, under permissible weather conditions. Embracing active involvement of family members At the midpoint review, this team was chal- can aid in optimizing the health and well-being as lenged to reconsider the pathways throughout the well as promote continuity of care (Frampton space for patients, staff, families, information, et al., 2013). Research has also underscored that medication, supplies, and equipment. The jury family member presence has minimized patient posed a series of questions to the team: How do anxiety and stress (Ulrich, Zimring, Quan, & staff navigate in this environment? How do sup- Joseph, 2006) and increased patient comfort and plies get to their proper destination? How will satisfaction (Choi & Bosch, 2013). patients and any accompanying family or friends move throughout the facility? The group responded by creating a diagram Conclusion tracking these pathways and functions, which in In this article, we advocate for using narratives turn, impacted the layout of spaces. In addition, they to achieve inspired experiences within 144 Health Environments Research & Design Journal 9(2) healthcare environments. Narratives enable Narrative inquiry offers an effective means design students to gain insight about the people to surface misconceptions about end users for whom they design. Storytelling offers one and tensions between stakeholders that can way to cultivate empathy in designers and helps be reconsidered in the design to create more develop a mind-set for elevating the level of satisfactory outcome. patient-centered care. The challenge for all who Narrative inquiry can be learned as a design contribute to the healthcare experience is to tool and can be integrated into predesign become more ‘‘respectful of and responsive to research, schematic design, and in final solu- individual patient preferences, needs and values, tions to reinforce empathetic solutions show- and ensures that patient values guide all clinical ing strong alignment between individuals and decisions’’ (Institute of Medicine, 2001b, p. 40). environments. Gensler’s Design Forecast 2015 reinforces the paradigm shift in the areas of healthcare, ‘‘From Acknowledgments providers to consumers, from organizations to individuals, healthcare is in the midst of massive This authors would like to thank Herman Miller, change ... personalized medicine integrates Inc. for their generous support. Herman Miller, clinical innovations with tailored care delivery. Inc. greatly contributed to the project and helped The rise of specialty care facilities reflects this shape this study. The project team of Doug Bau- development’’ (p. 48). The narratives of patients, zin, Kristen Bennett, Anthony Rotman, and Janet families, and staff focus on the individual and Zeigler are recognized for their contributions to expand to lessons for the greater good. Well- this study. The authors also wish to recognize all crafted stories offered the possibility of connect- students who were part of this studio as well as ing students more deeply to the inner lives of graduate research assistant Jill DeMarotta for her patients, families, and caregivers. work on the project. Finally, we would like to Narrative inquiry has the potential to heighten acknowledge the following students for image empathy within the design process and finalized contributions—Figures 1–4: Dianne Austria, product unlocking human-centered design. One Kayla Johnson, Kristin Kaiser, and Jordan Mer- student noted the power of a narrative approach ricks; Figures 5 and 6: Mariel Beesting, Santanna in healthcare design: Cowan, Meike Humpert, Leah Leto, and Lauren Mahrer; and Figures 7 and 8: Daniel Fragata, Writing a narrative along with the design process Theresa Kellner, Sabryna Lyn, Rachel Mathis, really helped me go back and identify empathy for and Brianne Shane. the patient or staff member. Sometimes you can get so caught up in a design that it doesn’t become Declaration of Conflicting Interests about the user anymore. Writing a narrative forces The author(s) declared no potential conflicts of you to be that user and speak about your experience. interest with respect to the research, authorship, It brings the design full circle. and/or publication of this article.

Funding Implications for Practice The author(s) disclosed receipt of the following Designers can and should play a critical role financial support for the research, authorship, in shaping a holistic healthcare experience and/or publication of this article: This work was by creating empathetic design solutions that supported by Herman Miller, Inc. [grant number: foster a culture of care for patients, their fam- 00110075]. ilies, and staff. Narrative inquiry can encourage design crea- Notes tivity and innovation in considering the end 1. Cleveland Clinic is a nonprofit medical center users of the spaces—patients, caregivers, and committed to integrating clinical and hospital families—from a whole-person perspective. care with research and education. Carmel-Gilfilen and Portillo 145

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