Co-designing the Palliative Care Hospital Experience with Clinicians, Patients, and Families: Reflections from a Co-design Workshop with Clinicians

Abstract

This chapter describes a design thinking workshop in a different context to most HEAL projects—that of a Palliative Care ward in a private hospital. The design team used various arts-based approaches, including empathy mapping, idea storming, and persona development to help staff take a positive approach to re-imagining how they could provide exceptional service to their consumers throughout their palliative care and end-of-life experience. The results showed that even small changes can make a big difference at the end of someone’s life.

1 The Palliative Care Context

Illness, death, and dying are an inevitable part of the human experience. As a society, however, we spend very little time thinking, talking about, or planning for the end of life or palliative care, which is the provision of end-of life support to a person with a life-limiting illness and their carers. Palliative care is person and family-centred care that maximises quality of life until death, enabling the management of pain and symptoms. These symptoms may be physical, emotional, spiritual, and/or social. The process of confronting and preparing for death can be challenging for individuals and their families, who work to maintain control and find meaning in the dying process, and for clinicians, who aim to provide quality care and enable dignity at the end-of-life [1, 2].

Depending on their individual preference and situation, as well as the illness type and progression, people can die at home, in hospices, in residential aged care, and in hospital. In this chapter, we focus specifically on how a sample of clinicians would redesign the palliative care hospital experience in one private hospital in Brisbane, outlining our specific co-design approach and activities to enable others to learn from and potentially apply our methods in their own co-design context.

2 The Value of Co-design

Co-design is an inclusive and collaborative approach, designed to foster open communication, creativity, and a sense of shared ownership among participants. Bate and Robert [3] first advocated for the philosophy and method of experience-based co-design in health, arguing that services should be co-designed with the patient, not around them. These principles of co-design are now deeply ingrained into healthcare. The principles of co-design, also known as participatory co-design, co-creation, co-production, co-innovation, human-centred design have become the spirit of our times, the Zeitgeist, in healthcare quality improvement [4]. Co-design is a collaborative design-research approach which is based upon a partnership between a designer (or design team) and the user(s) of a design [5], with experience-based co-design (EBCD) used to engage diverse groups of people in empathising, ideating, problem-solving, co-creating, innovating, prototyping, envisioning, and iterating. The argument for co-design in healthcare is simple. This collaborative user-centred approach helps enable the ideal vision for person and family-centered care that is, “a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care” [6, p. 7].

At its best, co-design helps to enable patient and family centred care by ensuring that the voices, insight, and wisdom of those receiving the care are integrated into practice, listened to and their experiences. As McKercher [5] outlines, co-design is a movement and a mindset that emphases making things and learning together, moving from a translational focus (on products and products) to a transformation process that produces outputs alongside social transformations. The creative participatory approaches of codesign—kinaesthetic, visual, sensory, interactive, oral—facilitates “self-discovery and moving people from participants to active partners” (p. 15), enabling “people to see themselves and each other differently” [5, p. 17].

Co-design is an approach to designing with, not for, people …. The primary role of co-design is elevating the voices and contributions of people with lived experience. Beyond writing on sticky notes, co-design is about how we are being (our mindsets), what we are doing (our methods) and how our systems embrace the participation of people with lived experience (social movements) (p. 14).

Co-design sessions can and should be what Mezirow [7] described as a transformative learning experience: participants (learners) (1) obtain new information and insights (2) which results in evaluating past ideas and understanding, and (3) a process of critical reflection of questioning and examining things from a fresh perspective, which results in (4) a fundamental, transformative change in their perspective.

Creating the environment for a transformative learning experience within a codesign workshop, where co-learning, creativity, innovation, and collaboration is fostered, is not straightforward. Surprisingly, while there is a growing body of literature on group facilitation methods and the value of co-design mindsets and processes, specific details on the tools, techniques, processes, and activities within co-design sessions remains limited, especially in the palliative care context.

As Sudbury-Riley et al. [8] recently noted, a service design perceptive (which underpins co-design) is a valuable and novel person-centred approach for shaping palliative care services, and uncovering “real opportunities for service improvement” (p. 3). Deploying a Trajectory Touchpoint Technique (TTT), Sudbury-Riley et al. [8] journey mapped seven key processes with 239 participants (palliative care patients and their families) from eight different palliative care providers over 4 years, with their study providing invaluable patient-centred insight into what matters in the entire experience—not only clinical care factors. For example, alongside clinical pain management, what might be initially viewed as the ‘smaller’ details were in fact critical for patients and their families: whether it was aromatherapy, hair care, access to pets and creative activities (art, music, craft) and social interaction with others, service users expressed a broader perceptive on what ‘good palliative care’ looked like for them.

In the reminder of this chapter, we reflect on and share the co-design approach we deployed to reimagine the palliative care experience at one service. The participating service included both inpatient and home care programs supported by an interdisciplinary team who provided services to people with a range of life-limiting conditions. As this project was conducted during the COVID-19 pandemic when in-person and group participation was restricted, and because our consumer participants had life-limiting illnesses which meant they had limited energy and were vulnerable to infection, we structured participation differently. Clinicians working in the participating service engaged in one 3 h in-person co-design workshop, while consumer engagement was via individual “bedside” consultations offering an abbreviated version of the workshop. Sudbury-Riley et al. [8] also deployed bedside consultations in their palliative care service design project, noting that it enabled very ill individuals to participate. This chapter focuses primarily on the staff perspective from the workshop.

3 The Co-design Workshop for Clinicians

Thirteen clinicians and service providers representing a range of health professional disciplines and volunteers came together for a fast-paced 2-h workshop to share their knowledge, experience, and aspirations for palliative care from the perspective of both the hospital and community care experience. Over the course of the workshop, participants engaged in several different design-based research activities which were specifically tailored and aimed at encouraging wild ideas, uncovering perceived barriers to change, and developing practical solutions for improving the palliative care journey for patients and their families. The project received human research ethics approval from both the university and hospital committees, with all participants providing informed consent. Two researchers led the workshop, alternating between leading the conversation and taking written notes, with other data including an interactive, collaborative digital platform (Mentimeter) and participant worksheets, with drawings and written feedback.

In designing the workshop, we drew on principles from appreciative inquiry (a positive psychology and storytelling lens) alongside co-design and design sprint approaches. Design sprints, for example, typically comprises of five key iterative steps (Empathize, Define, Ideate, Prototype, and Test), with co-design approaches amplifying the voice of end-users. A design sprint typically comprises three phases (inspiration, ideation, implementation), variously emphasising both divergent (multiple wild, improbable, and radical ideas) and convergent (focused) thinking processes to enable innovation. The six key stages in this palliative care co-design workshop processes, alongside key findings, are outlined below—starting with (1) connection and creativity; then (2) empathy mapping (imagining and learning about the user group’s experience); followed by (3) ideation (creative brainstorming); (4) barriers to change; (5) focussed idea-storming; finishing with (6) the process of prototyping and pitching one innovative solution.

3.1 Step 1: Connection and Creativity—Creating a Psychologically Safe Space Which Fosters a Co-design Learning Mindset

In creating this co-design session for palliative care clinicians and service providers, we were aware that a critical desired outcome was the co-creation of innovative, game-changing ideas. Co-design can be a powerful force for collaboration and creativity, however the development and sharing of innovative ideas will only happen in a group setting if there is a safe space for reflective dialogue, active collaboration, and learning. It is the facilitator’s role to create and hold a psychologically safe space for sharing, and to encourage the intellectual risk taking that leads to deep, truly transformative ideas. As Page et al. [9] explain, “collaborations require the right emotional conditions and appropriate incentives for intellectual risk taking, including appropriate support mechanisms that help groups and individuals explore new fields” [9, p. 90].

One strategy that the design team frequently deploys is to use drawing as an ice-breaker activity, asking participants to start by drawing—and then sharing—a “moment of exceptional practice—when they felt inspired and motivated in their work”. The positive focus is an intentional appreciative inquiry-inspired approach. Developed by David Cooperrider, appreciative inquiry draws on positive psychology and storytelling, and is the purposeful search for what is best in people and organisations [10].

With the aim of starting the session in a positive mindset, participants were invited to share their vision for palliative care in one word through an aspirational word cloud. Using a QR code linked to an interactive, collaborative digital platform (Mentimeter), the participants described the ideal palliative care journey using words such as supportive, inclusive, healing, personalised, and sacred, as Fig. 1 illustrates.

Fig. 1

What does the ideal Palliative Care journey look like?

Table 1 Consolidated findings from empathy mapping exercise

The second activity, based on an appreciative inquiry approach, invited staff members to recall, sketch, and share an individual ‘exceptional moment’ when they were really engaged, excited, and proud of themselves and their work. After sketching these moments, selected participants shared these with the larger group, with the images then pinned to the wall, gallery-style. Participants’ stories centred around the moments when they were able to truly support patients and their families, and went beyond their role to provide personalised care and support.

As Fig. 2 illustrates, drawings depicted actions such as providing patients with their favourite food, organising for them to leave the hospital for the day and go to their favourite restaurant or to have a picnic in park, moving all the beds by the window so patients could watch fireworks along the river, hoisting and wheeling a patient down to the garden to enjoy the sun with their wife, or simply sitting with patients during the night and holding their hands as they are dying. One participant shared an exceptional moment when they went out to help a distressed family member find a car park so they could see their loved one who was close to dying. Another participant recalled a moment when they offered a patient’s wife to have a “last cuddle” and lay-down in bed with the patient in his last hours. These first two activities enabled staff to step out of the day-to-day mindset of service delivery and the broader challenges associated with creating change, and to remind them of both the bigger picture as well as the little gestures and initiatives that can make all the difference to patients and their families during this emotional journey.

Fig. 2

Sketching exceptional moments

3.2 Step 2: Personas and Empathy Mapping—Imagining and Learning About the User Group’s Experience

The second step was to foster empathy, through personas and empathy mapping. Personas are fictional characters designed to help us better consider, imagine, and step into the shoes of another—to have empathy for their unique experiences, feelings and perspectives, and then use that empathetic imagination and understanding to guide actions. Here, participants were invited to empathise with Anne, a 67-year-old living with a chronic illness and recently diagnosed with a life limiting illness, by reflecting on what she Says, Thinks, Does, and Feels, using a traditional empathy map activity sheet, as illustrated in Fig. 3. Through activating empathetic imagination, personas and empathy maps enable people to imagine and step into the shoes of another. Specifically, Anne was described as a retired 67-year-old who lives at home with her husband. Anne has two adult children, although they both live inter-state. For the past 10 years Anne has been living with a chronic illness but has recently been diagnosed with a life limiting illness.

Fig. 3

Empathy mapping, with persona—the findings of which are summarised in Table 1

3.3 Step 3: Creative Ideation—‘Wild Ideas’ for ‘Disrupting the System’

Following the empathy mapping exercise, and before becoming stifled by challenges, facilitators led the participants through an exercise to dream up three ‘wild’ ideas using a basic floor plan or ‘mud map’ of the hospital. Framed as ‘Disrupting the System’ participants were invited to work as groups to annotate the floor plan (Fig. 4) by (1) adding something new, (2) taking something away, and (3) replacing something with another thing. Some of the ideas were focused on improving or enhancing what was already at the service, such as making the lift wider, improving the AV (CDs MP3s, better WIFI, bigger TVs, movies), and creating a bigger staff room and family lounge. Features to add included a library and fish tank, and to turn to some rooms into an activity room, family room, counselling room, or another staff room, and install windows and skylights to these spaces. A popular idea was to replace the riverside wall with large windows and full glass doors that open onto the balcony with room for hospital beds, and to add a ‘verandah’ around the full perimeter of the building with pot plants and greenery which provides patients access to ‘sunshine and fresh air’. Participants also suggested a gym/activity room, a playground area, animals, more vending machines, a short order menu from the kitchen, and a patient-friendly and accessible garden. The only suggestion to remove or take something away was to move the morgue entrance away from ground floor to somewhere with more private access.

Fig. 4

Activity sheets—‘Disrupting the System’

3.4 Step 4: Identifying Barriers to Change—Staff, Space, Social, and System

Upon completion of the ‘wild ideas’ activity, participants were invited to ease back into a more pragmatic mindset, and unpack potential barriers towards bringing these ideas to life and challenges more broadly. In this activity, designed as more of a game, contributors (working in teams) each began with a piece of coloured paper (orange = staff, space = green, social = pink, system = yellow) and were asked to write one challenge or barrier relevant to that category, before folding the paper to conceal their answer and passing the paper on to the next person. This activity called ‘Write-Fold-Share’ was inspired by a collaborative art method called ‘Exquisite Cadaver’ (from the original French term Cadavre Exquis) whereby a collection of words or images are collectively assembled in sequence, which in this case included the additional element of not being allowed to see what the previous person had wrote. At the end of the activity, participants unfolded the paper and played ‘Challenge Bingo’ to discover the common challenges.

Across the board, the most common perceived barriers to change were a lack of funding, a lack of space, and lack of time for staff to spend with patients. Participants noted that the hospital environment was busy and task-orientated, which limited the time staff had to engage with patients on non-clinical tasks. The Covid-19 pandemic exacerbated existing issues of social barriers and disconnection for patients and their families, with limited car parking and public transport options mentioned. Physical space, both indoors and outdoors, was a barrier. Participants mentioned small rooms, limited patient and family areas, and that patients were often unable to easily access outdoors areas in beds and recliner chairs.

3.5 Step 5: Idea-Storming—Brainstorming and Formulating Creative Solutions

The second-last activity focused on brainstorming creative solutions, with clinicians provided a handout which instructed them to explore the specific perspectives of Place, People, and Process along the journey from Home-to-Hospital (and sometimes Hospital-to-Home). In groups, participants engaged in this “idea-storming process”, developing as many ideas as possible, as illustrated in Fig. 5. Alongside ideas for simplifying and streamlining the admission and communication processes (for example, establishing a single point of access, improving access to patient records and discharge summaries, the clash between electronic community systems and paper-based wards), there were many ideas centred on enhancing the patient journey. Ideas groups proposed included: educating family members about pain medication for home-based care; the potential of an app to aid communication; developing clear, written information and instructions outlining what to expect when transitioning from the community setting to the hospital (i.e. bring your own clothes), while not making any promises (i.e. promising a certain procedure will be done on admission); and improving intake and discharge processes, perhaps by having patients create and share their own ‘care history/preferences’ summary for clinicians.

Fig. 5

Idea Storming along the Home-to-Hospital/Hospital-to-Home Journey

3.6 Stage 6: Prototyping and Designing Change

In the final activity, participants were asked to generate and develop one preferred solution from the previous idea-storming phase, developing a name for the solution, alongside detailed descriptions about WHAT the idea is, WHY it is important or needed, HOW it works, and HOW it can be implemented, both in the short-term and long-term. Each group pitched their idea to the group, and were given some large ‘fun money’ to vote for and invest in their favourite ideas.

Figure 5 illustrates some of the solutions teams developed, from a ‘End of Life Suite’ to improving admission and discharge processes, to team-building activities. In describing the ‘End of Life Suite’, this team suggest trialling a family friendly end of life suite with additional rooms (bathroom, lounge, and kitchenette), with a view of a river, away from the noise, for family members to spend quality time with their loved ones at the end of their life. Specific details, as indicated in the sketch, include adjustable air-conditioning and lighting, adjustable partitions for creating flexible spaces, a sound system, pot plants, lamps for a ‘homely feel’, a kitchenette area with microwave, sink, and fridge, and a play area with games, craft materials, and toys. This space would, they felt, improve access for First Nations and culturally and linguistically diverse (CALD) families, as well as families with young children and for disability access (Fig. 6).

Fig. 6

Prototyping design ideas for a better end-of-life experience

4 Conclusion

Ultimately, co-designing the palliative care experience served as a transformative learning and collaborative team-building process. The process encouraged participants to reflect on their own exceptional care practices and then envision what an ideal end-of-life care experience might look like. The empathy and journey mapping processes reminded participants that providing exceptional palliative care is not solely about clinical interventions but also involves attending to emotional and psychological needs, creating a supportive and inclusive environment, and ensuring individuals and their families feel heard, respected, and valued.

The iterative co-design activities of idea-storming, barrier identification, and prototyping demonstrated the power of collaborative innovation in generating transformative solutions, encouraging participants to think creatively and generate a range of imaginative ideas that could positively transform the palliative care system. These co-design activities intentionally created a psychologically safe space for creativity and collaboration, fostering a dynamic exchange of ideas aimed to shape meaningful and practical improvements in palliative care. Translation and dissemination were a key component of our project. Ongoing operational and Covid-19 restrictions delayed a planned in-person exhibition which was intended to share the co-design processes and findings alongside providing unique visual insight into the palliative care journey by featuring both photographs taken by both participants (a photovoice approach) and a professional documentary photographer including the voices of patients and their families that were not able to be reflected in this paper. An online event is being planned, with these photographs and details on the co-design process and broader project activities and outcomes available on the project website.¹