Improving the Palliative Care Experience

Co-Designing the Palliative Care Hospital Experience

with St Vincent’s Health & Aged Care (SVHAC) at St Vincent’s Private Hospital Brisbane

The thoughtful evaluation and co-design of palliative care services is essential, to ensure high-quality care and strategically plan future services in light of growing demand, the COVID-19 pandemic, medical and technological advances. Participatory co-design approaches, which privilege the voice and perspective of consumers, are important and increasingly common in healthcare. In this study we utilised a range of engagement methods with patients, families, volunteers, and staff, to unpack the current palliative care “journey”, how people interact with an organization (the touchpoints) and identify areas for improvement. Engaging with these various perspectives using creative methods was beneficial for identifying novel insights about system and service delivery change that will enable improvement of the delivery of palliative care at St Vincent’s – both now and into the future.

Coping with a life-limiting illness is a challenging time, for patients, their families, and healthcare staff. In this qualitative research project, we use a participatory co-design methodology and creative arts-based research methods to (1) explore the palliative care journey at St Vincent’s Brisbane (both community and inpatient) and (2) identify ways to potentially improve it – from the perspective of patients, their families, volunteers, and staff, focussing on both current and future practice.


Design Challenge

How might we… use a participatory co-design methodology and creative arts-based research methods to redesign the palliative care hospital experience? 

In this project, we sought to explore this design challenge using three different research questions: 

  1. What is ‘good palliative care’ from the perspective of the patient, carer/family member, and staff – and what changes should be made?
  2. How might arts-based research and participant-generated visual images inform hospital palliative service improvements?
  3. How might arts-based research and participant-generated produced visual images engage staff and transform the palliative care experience?  


Stakeholder Engagement

This project employed a number of qualitative participatory methods, including videos, interviews, workshops, and participatory visual activities.

The workshop (aka ‘design sprint’) activity was focused on journey mapping the palliative care experience and involves separate workshops for staff and bed-side workshops for users of inpatient palliative care services. The workshops incorporated participatory visual activities such as photography and drawing. This overview is focused on the workshop with staff.

In April 2021, 13 clinicians and service staff from across St Vincent’s Private Hospital Brisbane (SVPHB) and community palliative care came together for a fast-paced two-hour workshop to share their knowledge, experience, and aspirations for Palliative Care from the perspective of both the hospital, and the 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.

Approach: Encouraging ‘Wild’ and ‘Practical’ Ideas

Co-design is described as a collaborative design-research approach which is based upon a partnership between a designer (or design team) and the user(s) of a design (Lee, 2008). As part of this co-design approach, some of the activities within the workshop were inspired by the Cooper Hewitt Smithsonian Design Museum design process which invites participants to brainstorm “wild, darling, and practical” solutions. Overall, this approach provides an opportunity for stakeholders and users (which in this case is staff members of SVPHB) to engage in a co-design process which draws on their knowledge and experience to not only develop practical solutions which are grounded in reality and their lived experiences, but which also invites them to step outside of the day to day realities, and envision the type of change that they would want to see if they had more time and resources.

Approach: Appreciative Inquiry and Positive Psychology

Our Experience Based Co-Design (EBCD) workshop was grounded in a positive psychology- inspired appreciative inquiry (AI) approach, first developed by Cooperrider et al. (2008). AI is a strength-based model that encourages change agents to look at people, systems and their organisation with “appreciative eyes”. Instead of the traditional deficit-based model of focusing on “what’s wrong, what’s the problem”, AI purposely focuses on strengths, achievements and opportunities, involving the whole organisation in a positive dialogue about the future. Linking appreciation (an attitude of mind and heart) and inquiry (a set of practices and processes), simply defined, AI is “about the search for the best in people, their organisations, and the strengths-enriched world around them” (Whitney et al., 2010, p. 1). AI purposely uses positive questions, such as “what is currently working?” and “what would work best in the future?” These “positive questions lead to positive images of the future and positive images lead to positive, long-lasting actions” (Stavros et al., 2016, p.117). AI typically follows a four step, 4D process: Discover, Dream, Design and Destiny (often with the addition of a 5th D, Define), with positive organisational change practitioners arguing that the process creates a positive space for imagination and innovation.

In many ways, AI is aligned conceptually with the design thinking process – although the two approaches are rarely explicitly linked. Cooperrider, who first conceptualised AI, has recently presented a new framework entitled IPOD – innovation-inspired positive organization development – which explicitly links in design theory with appreciative inquiry, positive organizational scholarship, positive psychology, and sustainable enterprises (Cooperrider & Godwin, 2011). The theory of change underlying IPOD outlines three stages in creating strengths-based organizational innovation: (1) the elevation and extension of strengths, (2) the broadening and building of capacity, and (3) the establishment of the new and eclipsing of the old. Cooperrider and Godwin remind us of the value of a collaborative design approach – the “belief that individuals’ commitment to change is directly proportional to the degree to which they are engaged in designing the change and that everyone in the system—not just researchers and consultants—are potential “experts,” with valuable insights for the change process” (p. 739).

Step 1: Aspirations for Palliative Care

With the aim of starting the session in a positive mindset, the workshop 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, the participants described the ideal Palliative Care journey using words such as supportive, inclusive, healing, personalised, and sacred.

Aspirational Word Cloud

Step 2: Exceptional Moments

The second activity, based on an AI 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, participants had an opportunity to share these with the larger group and celebrate each other’s work. After sharing these exceptional experiences, the images were pinned to the wall in a gallery style.

Most of the stories that staff members shared that made them feel a sense of pride in themselves and the work that they do were focused around moments when they were able to support patients and their families, and the various ways in which they were able to go above the call of duty to provide personalised care and support. Examples of these moments, as indicated by the participant’s drawings include: providing patients with their favourite food, organising for them to leave the hospital for the day and go to their favourite RSL or have a picnic at Mt Cootha, moving all the beds by the window so patients could watch fireworks, hoisting and wheeling a patient down to the garden to enjoy the sun with their wife, or simply sitting with patients during the night or holding their hands as they are dying.

However, not all of these moments were focused solely on the patient. Some of the participants reflected on moments when they were able to provide extra care and support to family members ofpatients and provide opportunities for them to spend quality time with loved ones in their final moments and say goodbye in dignified and loving ways. 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. This activity was helpful for getting staff out of the day-to-day mindset of service delivery and the broader challenges associated with creating change, and to remind them of both (1) the bigger picture and (2) the little gestures and initiatives that can make all the difference to patients and their families during this emotional journey.

Step 3: Personas and Empathy Mapping

Following the appreciative inquiry activity, the workshop continued with an empathy mapping task, which invited participants to ‘take off their shoes’ and step into the perspective of a palliative care patient persona, while drawing on their knowledge and experiences.

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 our actions. The first step in the design process is Empathise, because undertaking the perspective of users is so critical – this can be done through creating personas and/or the completion of empathy maps (Figure 4: Empathy Maps). Personas assist with strategizing and communicating, serving as archetypes which help make the unique experiences, wants, goals, hopes and fears of different people memorable, realistic, and believable. Ideally, personas are research-based – created from workshops, interviews, observations, quantitative and qualitative data, or in the medical context, draw on actual cases to trigger deep reflection, discussion, and relevant responses, helping ensure any initiatives resonate. 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. Table 1 shows the consolidated results.

 

Empathy Maps
Empathy Map Findings (Consolidated)

Step 4: Disrupting the System

Following the empathy mapping exercise, and before becoming stifled by challenges, facilitators led the participants through an exercise to dream up 3 ‘wild’ ideas using a basic floor plan or ‘mud map’ of SVPHB hospital. Framed as ‘Disrupting the System’, participants were invited to work as groups to annotate the floor plan by (1) adding something new, (2) taking something away, and (3) replacing something with another thing. Overall, the design and delivery of this exercise was aimed at creating a safe-space where ‘anything goes’, wild ideas are welcomed, and self-limitation is avoided as much as possible.

Some of the ideas were focused on improving or enhancing what was already there, 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. The only suggestion to remove or take something away, was to move the morgue entrance away from ground floor to somewhere with a more private access. There was a popular suggestion to replace the riverside wall with large windows and full glass doors that open onto the balcony with room for hospital beds. This was closely related to a common suggestion across most of the groups to add a safe deck or ‘verandah’ around the full perimeter of the building with pot plants and greenery which provides patients access to ‘sunshine and fresh air’. There was also a suggestion to turn Room 12 and Room 19 (both dark spaces) into an activity room, family room, counselling room, or another staff room, and install windows and skylights to these spaces. Another very popular suggestion across most of the groups was to replace the existing small car park with a free, multi-level carpark for families, friends, and staff members. While potentially controversial for a healthcare project, there is a shared understanding amongst staff members that patients require access to a safe and accessible smoking area, with the potential to add exhaust fans to remove the smoke if created inside the building.

Other suggestions of things to ‘add’ include:

  • Mini library
  • A fish tank to the 3rd level
  • An extra public toilet
  • More bariatric equipment: i.e. motorised wheelchairs, and electric recliners (which are easy to move)
  • On-call nurse suite
  • Double hospital beds
  • Music
  • Coffee Cart
  • A gym/ activity room
  • A playground area
  • Bring back the volunteers
  • Animals
  • Vending machines
  • A short order menu from the kitchen
  • Patient friendly and accessible garden space (which could be achieved through the creation of a deck or verandah space with pot plants.

One group boldly suggested beginning again, starting with and placing utilities and storage areas to face the road. While most of these ideas were suggested in the spirit of being ‘wild’, and there were some light-hearted disagreements about the type of animal that people would prefer (the ole dog vs cat debate), overall, the reaction in the room when these ideas were being shared was largely supportive and highlighted the value of creating opportunities for these ideas to surface in a strategic setting/context.

Disrupting the System Activity Sheets

Step 5: Barriers to Change

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, in addition to a variety of other interrelated issues. It wasn’t surprising to learn that the social barriers and disconnection for patients and their families due to limited car parking and public transport options were exacerbated by the COVID-19 pandemic and visiting hour restrictions. However, one participant indicated that the existing marketing communication methods further add to challenges by limiting clinician’s ability to enhance engagement, adding ‘let us engage our communities”.

It was surprising to learn that many of the participants indicated some concern over the skill-set of staff members, highlighting experience, expertise, and education as a barrier towards change. Therefore, it was interesting that participants also mentioned that the hospital environment is both busy and task oriented which limits the ability for staff to improve on their skills and abilities, but also limits time allocated to spend with patients.

In terms of the physical spaces within the hospital, there was an overwhelming sense that space is limited both indoors and outdoors, with specific mentions of small rooms, limited patient and family areas, and an inability for patients to access the outdoors areas in beds and recliner chairs. A couple of participants also indicated financial constraints as a barrier towards improving spaces.

There was, however, an overwhelming number of responses which perceive a lack of funding to be the biggest barrier to creating change, with a specific mention of a lack of funding for Metro North palliative care patients accessing SVPHB. Other barriers mentioned in relation to the overall system include an ‘unorganised system’, ‘complex process’, a ‘lack of communication’, ‘staff retention’ issues, and more broadly a ‘lack of understanding of the work by politicians’.

Step 6: Idea-Storming

The second last activity was focused on brainstorming creative solutions from the perspectives of Place, People, and Process along the journey from Home-to-Hospital, or even Hospital-to-Home, (as we found out, the journey can often go in both directions). In groups, participants were asked to develop as many ideas as possible within the time frame using the activity sheets provided.

In addition to generating ideas and solutions, this activity was also helpful in bringing to light some key challenges across the system, and between the hospital and community care teams. One of the biggest issues as shared by the participants was a strong ‘them’ versus ‘us’ culture which leads to blaming and feelings of not being a unified team. In resolving this issue, there were suggestions of implementing team building exercises or joint networking events which would enable people to get to know each other better and ‘humanise’ the team. While most participants indicated familiarity of people’s names and voices, given that they need to communicate on the phone a lot, one person shared that they would not recognise members of the other team if they walked passed them in the workplace. One of the suggestions for navigating blame between teams was to initiate joint education or training events to create a sense of equality between the teams. While another suggestion, which would eradicate the notion of ‘teams’ altogether, was to introduce rotational working options whereby staff members would alternate between the hospital and community each month, allowing them to understand the various roles and ‘walk in each other’s shoes’.

There were several suggestions both within this activity, and over the course of the entire workshop for ‘more time’, with specific indications in this activity for greater time allocated for handovers and documentation. This was coupled with suggestions to increase the number of staff, increase staff availability, and increase the amount of time that staff have, to do their various tasks, to spend with patients, and attend family meetings.

Another common issue shared was communication. The workshop participants indicated that greater integration and communication is required across all the entire health services. Specific examples of where this is needed include communication breakdowns which are caused due to the community being fully electronic while the ward is still paper-based. One of the suggestions which could aid in communication, and the process of handovers is to introduce patient care folders which stay with the patient, with the suggestion that this would avoid disruption to ‘therapeutic alliance’ due to patients having to re-tell their story to another professional. The communication required in relation to the admission process was also highlighted as being extremely time consuming and cumbersome, requiring multiple steps and a large amount of phone calls, with suggestions to establish one point of access. In addition to the admission process, the discharge process was also highlighted as needing improvement. Workshop participants indicated a significant issue with trying to access patient records and discharge summaries across different services. The delays caused by not being able to receive certain information without a consent form can impact on the ability to navigate patient journeys, as they cannot triage without the necessary data.

In relation to the patient journey, one suggestion is to provide clear, written information and instructions to the patients about what will happen and what to expect. This is viewed as especially important for those 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, which can be difficult for patients and families). However, participants also indicated the importance of providing information to family members, particularly in relation to educating family members about pain medication for patients for home-based/community care. Many of these suggestions for communicating with both patients and family members could be addressed through the suggested use of a ‘Palcare App’.

Finally, there was also a suggestion to implement patient satisfaction surveys. While there was discussion during the workshop that there might already be an existing mechanism for gathering ward data related to patient satisfaction, workshop participants were uncertain as to what happens with this data, which is seemingly under-utilised.

Activity Sheets – Idea Storming across the Patient Journey

Step 7: Designing Change

Following on from the previous activity where the workshop participants were invited to come with a wide range of ideas across the patient journey and hearing all of the other amazing ideas in the room, in the final activity they were asked to generate one preferred solution from the idea storming phase. In this activity, participants could draw from any of the ideas from the previous session, and elaborate on it, including a name for the solution, and detailed descriptions about WHAT the idea is, WHY it is important or needed, HOW it works, and HOW it can be implemented through suggestions of both short-term and long-term actions. At the end of the activity, each group pitched their idea, and were given some ‘fun money’ to invest in their favourite ideas – with all ideas outlined below.

Team 1 – ‘End of Life Suite’

In this activity Team 1 designed a solution which they called ‘End of Life Suite’. In describing their idea, they 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 (see below), 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. Team 1 highlighted the importance of this initiative for improving access for Culturally and Linguistically Diverse (CALD) families and First Nations families, families with young children, and for disability access. As part of this trial, Team 1 recommends remodelling an existing double bedroom into one large family room (adapted for the trial period) and gathering data relating to family sizes and the number of people that would have stayed if there were more of these spaces available. Following the trial period and pending the success of the trial, they recommend hiring an architect to improve all the other rooms, presumably following this model, with the addition of balconies.

Team 2 – ‘Project Northside: Northside Inpatient’

Team 2’s idea was for St Vincent’s to establish an inpatient unit on the Northside with funding for public patients. According to their proposal, this new unit would include 10 beds with full palliative care staff in SVPHN, and would be ‘all hours’, include direct admissions, and would include both private and public patients. This idea responds to the current situation where patients on the northside only have access to 1 PN (if private), there is no public funding, and it is too far for some patients to travel and park. In the short-term, Team 2 suggests allocating some beds on the ward to palliative patients (possibly 1C), and long-term — increasing to become its own unit with full palliative care trained staff.

Team 3 – ‘Team Building’

In their idea for designing change, Team 3 responded to the various issues mentioned in the previous activities, in their suggestion of several Team Building initiatives. Their vision is ‘Two Services: One Team, with One Goal” (see below). In this proposal, Team 3 suggests regular: team building exercises, joint education, joint forums and team meetings, and joint feedback (no longer separate). In the short-term, they suggest encouraging staff to gain experience in the opposite service (which relates to previously mentioned suggestion for rotational months across community and hospital settings), ‘quarantine time’ for staff to allow for these activities, and for community nurses to participate in ward rounds (initial) and family meetings more regularly. Suggested long- term strategies include building more regular meetings and activities, and to increase the number of staff to enable these types of activities. Overall, Team 3 argues that this idea would contribute to increased satisfaction for patients and families (in return – decrease frustration), increased teamwork, productivity, and efficiency, and increased staff satisfaction leading to greater staff retention and expertise within the team.

Team 4 – ‘Improving Admission & Discharge’

In their proposal for change, Team 4 suggested introducing an Admission and Discharge review process to uncover what went well, what could be better, and potentially what did not go as well as it could have. Aimed at establishing better communication, increasing patient experience, and allowing staff across the community to get to know each other better, this idea involves face to face handovers between IPU and the community, feedback between NUMs about the admissions and discharges, patient experience feedback, as we see below (see below).

Team 1’s ‘End of Life’s Suite’
Team 3’s Team Building Concept
Team 4 – ‘Improving Admission & Discharge’

Outcomes

 

During our co-design workshop with staff of the palliative care ward, we utilized arts-based methods to gather ideas and insights to improve the palliative care experience. The stakeholders in attendance were highly engaged and generated a plethora of ideas focused on increasing comfort for palliative care patients.

Despite the workshop only lasting 2 hours, there was a great deal of positive and reflective dialogue, resulting in many insightful ideas for purposeful action which have been outlined in a project report and in an online exhibition on the project website. Overall, the design thinking workshop proved to be a powerful approach for connecting with, clarifying, and mobilizing participants’ energies and priorities.


Project Team

Professor Evonne Miller – Design Sprint Facilitator, Director of the QUT Design Lab 


Appendices

Click on an image to download the Activity Sheet.
Note: the Disrupting the System Activity Sheet contains a floor plan of St Vincent’s Brisbane and therefore will not be applicable to other settings. The Idea Storming activity sheet will only apply to contexts involving patient journeys across home and hospital. In this project we discovered that often patients will go back and forth between these locations, and therefore would require the arrow to go both ways. This will differ based on the project.

Exceptional Moment
Empathy Map
Disrupting the System
Idea Storming
Designing Change

 


References

Cooperrider, D.L. & Godwin, L.N. (2011). Positive Organization Development: Innovation-inspired Change in an Economy and Ecology of Strengths. In Oxford Handbook of Positive Organizational Scholarship, K.S. Cameron & G.M. Spreitzer (Eds). Oxford University Press.

Cooperrider, D.L., Whitney, D., Stavros, J.M., & Fry, R. (2008). Appreciative Inquiry Handbook: For Leaders of Change. Berrett-Koehler.

Lee, Y. (2008). Design participation tactics: The challenges and new roles for designers inthe co-design process. Co-Design, 4(1), 31-50.

Stavros, J.M., Godwin, L.N., & Cooperrider, D.L. (2016). Appreciative Inquiry: Organizational development and the strengths revolution. In Practicing Organizational development: Leading transformation and change (4th Ed), W.J. Rothwell, J.M. Stavros & R.L. Sullivan (Eds). Hoboken, New Jersey: John Wiley & Sons.

Whitney, D., Trosten-Bloom, A., & Cooperrider, D.L. (2010). The Power of Appreciative Inquiry: A Practical Guide to Positive Change. Berrett-Koehler.