*Article* **Play Elements as Mechanisms in Intergenerational Arts Activities to Support Community Engagement with End-of-Life Issues**

**Max Kleijberg 1,\* , Rebecca Hilton <sup>2</sup> , Beth Maina Ahlberg 3,4 and Carol Tishelman 1,5**


**Abstract:** Talking about dying, death, and loss may be difficult. Arts offer alternative ways of engaging with end-of-life (EoL) issues, but little is known about the means through which this occurs. In this article, we aim to explore mechanisms in arts activities that support community engagement with EoL issues, based on the community-based participatory action research project Studio DöBra. Studio DöBra was developed to support community engagement with EoL issues through intergenerational arts workshops involving community partners, children, and older adults. Initial analysis with community partners indicated the importance of play elements in arts activities. Continued analysis was therefore abductive, using play theory and qualitative data from Studio DöBra arts activities. Through iterative examination of theory and data, we modified play theory as we identified mechanisms supporting community engagement with EoL issues in arts activities. Findings can contribute to theory-building that can inform arts activities supporting community engagement with EoL issues.

**Keywords:** end-of-life; health promotion; arts activities; community-based programs; children; older people; intergenerational; play

### **1. Introduction and Aim**

Although death and loss are all around us—in our private lives, in the news, and other media—talking about these issues may be difficult as they are often considered sensitive and involve experiences that may be difficult to put into words [1,2]. In the existing literature we found consensus that arts activities offer alternative ways of engaging with end-of-life (EoL) issues, e.g., by involving all senses and including non-verbal modes of communication [1–5].

Arts activities have been used in healthcare settings, death education, and therapies to ease communication about EoL issues [2,3,6]. They are also used for health promotion purposes to engage communities in EoL issues, helping to encourage conversation and increase the sense of social support [2,7]. Examples of arts activities include painting, music making, dance, and pottery, with generally a focus on arts processes rather than finished products [2,5].

Such arts activities are commonly facilitated by professional artists or art therapists [1,2,8]. Along with offering alternative modes of expression, arts activities have been found to support communities, patients, families, and caregivers in coping with change, meaningmaking, and personal growth [2,9–12]. Furthermore, collective arts activities have been found to offer possibilities for creating relationships and supportive communities [8,9].

It is notable that research literature in this field predominantly describes arts activities developed and facilitated by institutionalized healthcare services. There appears to be a

**Citation:** Kleijberg, M.; Hilton, R.; Ahlberg, B.M.; Tishelman, C. Play Elements as Mechanisms in Intergenerational Arts Activities to Support Community Engagement with End-of-Life Issues. *Healthcare* **2021**, *9*, 764. https://doi.org/ 10.3390/healthcare9060764

Academic Editors: Georg Bollig and John Rosenberg

Received: 14 May 2021 Accepted: 17 June 2021 Published: 19 June 2021

**Publisher's Note:** MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

**Copyright:** © 2021 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

lack of research on arts activities in community settings to support the involvement of individuals and organizations outside healthcare institutions in issues related to dying, death, and loss, here referred to as community engagement with EoL issues. Furthermore, there is little literature about the specific ways, or mechanisms through which arts activities function to support engagement with EoL issues [1]. Therefore, in this article, we aim to explore mechanisms in arts activities that support community engagement with EoL issues.

### *Contextual Background: Studio DöBra*

The arts activities underlying this investigation are part of Studio DöBra, a project within the DöBra research program in Sweden ("DöBra" is a pun which literally means dying well, but figuratively 'awesome'). The DöBra research program applies a health promotion approach to engage communities in EoL issues [13]. In Studio DöBra, we partnered with community organizations to bring together children (9 y/o) and older adults (most 80+) in a series of arts workshops to engage with issues related to dying, death, and loss [4,5]. Partnerships and development of arts workshops were informed by principles of community-based participatory research [14]. However, we refer to our process as community-based participatory *action* research (CBPAR), since learning through doing, i.e., action, is central to our approach [15,16].

Two Studio DöBra iterations were developed; Studio DöBra 1 took place in 2016 in a multi-ethnic urban area outside a large city, Studio DöBra 2 in 2018 in a mid-sized town in a more rural area. These were developed by project groups consisting of first author MK, a PhD student with a design background, and the community partners shown in Table 1. Studio DöBra 1 partnerships were initiated by MK, while Studio DöBra 2 partnerships were initiated by the municipal organization for culture, based on positive word of mouth about the first iteration. As MK was part of both project groups, he contributed with lessons learned from Studio DöBra 1 in his engagement in Studio DöBra 2. Each iteration involved eight children and eight older adults in a series of five weekly, two-hour arts workshops. Table 1 summarizes characteristics of each Studio DöBra iteration as well as demographic information about those who were involved.

In line with CBPAR principles, project groups developed arts workshops through interactive cycles of action and reflection [14,15], i.e., using lessons learned to inform following workshops. Community partners with arts backgrounds took the lead in this process in each group. In Studio DöBra 1, these partners ran an artistic organization for children in the neighborhood in which they facilitated design projects, often explicitly using play as a pedagogical tool, e.g., through games and role play. In Studio DöBra 2, these partners had backgrounds in visual and performing arts, as well as primary school arts education, working together for the first time in Studio DöBra.

Partners with arts backgrounds also facilitated the workshops, with support from the other partners. During the arts workshops, participants explored topics related to dying, death, and loss through e.g., making collages in different materials, sewing, and creating sculptures. The findings provide more details about the arts activities.


**Table 1.** Characteristics of the two Studio DöBra iterations and demographic information.

<sup>a</sup> Partners with an arts background. <sup>b</sup> Partners who participated in the participatory analysis phase. The other partners did not participate due to personal circumstances or lack of professional mandate.

### **2. Methods**

### *2.1. Community-Based Data Generation*

After approval by the Swedish ethical review board (2016/1517-31/5; 2018/825-32), partners, older adults, children, and their parents all signed informed consent forms. Details about the involved partners, children, and older adults, are shown in Table 1. After each workshop, partners held reflective meetings sharing their observations, reflections, and informal feedback from participants; these became the basis for developing subsequent workshops. Documentation from these reflective meetings, i.e., audio recordings and transcripts, are one form of data underlying analysis.

During the arts workshops, MK acted as participant observer, documenting observations through field notes, photographs, and audio recordings of some conversations, while also interacting with participants and partners. Within 10 weeks after each Studio DöBra iteration, follow-up interviews were conducted with partners, participating children, and older participants to inform development of future iterations as part of the CBPAR process. Interviews with the involved teachers were conducted by MK. Other partners were interviewed by researchers from the DöBra research program who were not part of the project groups. These interviews with partners (range 40–112 min, median 72 min) were held in conversational form, rather than being guided by an interview guide with

predetermined questions, and focused on topics such as the experiences of developing and facilitating Studio DöBra workshops. All interviews with children and older participants were also conversation-based, focusing on their experiences of participating in Studio DöBra. In these interviews, a set of photographs from the workshops was used to support and stimulate the conversation. After Studio DöBra 1, MK interviewed children in a group (*n* = 6, 60 min) with the teacher present. After Studio DöBra 2, MK interviewed children individually (*n* = 8, range 15–37 min, median 28 min). MK interviewed older participants individually (Studio DöBra 1 *n* = 7, Studio DöBra 2 *n* = 7, range 31–118 min, median 71). All interviews were audio-recorded and transcribed.

### *2.2. Analysis*

In an initial participatory analysis phase, partners from both project groups (indicated in Table 1) came together for two whole-day meetings to reflect on and document lessons learned. In doing so, a new insight was that elements of play, in a variety of forms, were found throughout all Studio DöBra arts activities, although partners from Studio DöBra 2 had not previously considered that they used elements of play. This led to curiosity as to whether play theory could assist in better understanding ways through which arts activities support engagement with EoL issues. In the analysis phase that followed, we therefore took an abductive approach inspired by Tavory and Timmermans [17]. This phase was university-based, led by MK in a process repeatedly discussed and reflected on with co-authors, a team of three professors in EoL/nursing research, sociology, and creative practices, external to the project groups. Community partners and MK stayed in contact concerning developments in the abductive analysis and in the community, which continued their process of learning together [14].

Abductive analysis aims to develop new theoretical ideas through the creative use of existing theory in relation to unexpected observations, it entails an iterative process of moving between empirical data and theoretical literature [17]. We chose this approach as it guided us in further investigating the hitherto unforeseen observation of play elements throughout Studio DöBra arts activities, by iteratively moving between Studio DöBra's empirical data and play theory. In doing so we developed ideas about play elements as mechanisms in arts activities that supported community engagement with EoL issues.

Hamayon describes two camps in play studies [18]; one general approach to play, originating with Huizinga's theory, first described in 1938 [19], and a second approaching play from specific contexts and disciplinary perspectives, e.g., Frissen et al. who study play in digital media [20]. Although Huizinga's ideas about how human culture evolved from play may appear outdated and even somewhat problematic today, his definition of the characteristics of play remains classic in contemporary play studies [18,20]. In our analysis we used both Huizinga's characteristics of play [19], and Frissen et al.'s critique and further development of this theory [20].

Our abductive analysis started with looking for "defamiliarized surprises" to use Tavory and Timmermans' [17] term, i.e., observations in the empirical data that do not neatly fit existing theory. Thus, MK investigated if and how play elements described in the literature were expressed in the Studio DöBra arts workshops [17]. To this end, all available empirical data from partners, children, and older adults' perspectives, were combined into one dataset for each workshop, using the qualitative analysis software NVivo. MK repeatedly read transcripts, listened to audio recordings, and examined workshop photographs. He then coded data for play elements based on the literature. Memo writing throughout this process helped to identify and reflect on surprising observations in relation to theory.

One central element of play we investigated, which then provided a basis for our continued analysis, is described by Huizinga as the "magic circle" [19]. According to Huizinga, play is distinct from "ordinary life" by taking place in temporally and spatially bounded play-spaces, e.g., playgrounds, arenas, and the boards of board games, all are "temporary worlds within the ordinary world, dedicated to the performance of an act apart" [19] (pp. 9–10). A magic circle is the temporal and spatial boundary that separates play from ordinary life [19]. Inside the magic circle, "the laws and customs of ordinary life no longer count" [19] p. 12. The term is widely adopted in play studies [21]. However, Frissen et al. argue that Huizinga's theory is contradictory as it claims that play only happens outside ordinary life while it also states that play is interwoven into many parts of our daily lives [20]. Frissen et al. therefore assert that players can be in and outside playful modes simultaneously [20].

In our data we could identify a Studio DöBra magic circle, i.e., the spatial and temporal boundaries of the arts workshops. Additionally, in line with Huizinga, the norms and customs inside the Studio DöBra magic circle deviated from ordinary life in that participants and partners interacted across generations beyond their families and engaged with EoL issues, whereas this would not occur in ordinary life in the same way, as indicated by our previous research [4,5]. However, participants and partners appeared to move in and out of playful modes within the Studio DöBra magic circle, rather than Huizinga's idea of a magic circle as a separation between play and ordinary life, or Frissen et al.'s ideas about play and ordinary life occurring simultaneously. Through iterative analysis, moving between data and theory, we can describe the functionality of the Studio DöBra magic circle in supporting engagement with EoL issues.

Other play elements we investigated are characterized by ambiguity, as pointed out by Frissen et al. [20]. They state for example that play includes both "freedom and force", because it requires voluntary participation, but also adherence to rules [19,20]. Play also relates to both "reality and appearance", as it is part of ordinary life, but also characterized by players', often unspoken, consciousness of their play as different from ordinary life, e.g., just pretending [18,20]. Furthermore, play is both an "individual and collective" activity, requiring players' individual attention [20], but often leading to "the formation of social groupings" [19].

However, during analysis we noted a friction between our empirical data and the theoretical play elements. Rather than using force, we found that partners were balancing freedoms with restrictions in the ways they facilitated arts activities. We found that participants and partners dealt with imagination and real-life experiences, rather than appearance and reality. Additionally, we found that when partners and participants moved in and out of playful modes, they did so individually, in sub-groups, or collectively. As we went back and forth between theory and data, we further developed play elements and identified ways in which they supported engagement with EoL issues in Studio DöBra arts activities.

We continued analysis by searching for variation in our modified play elements throughout the data [17]. As the use and functionality of play elements changed across and within workshops, further analysis focused on what led to these changes. Specific events within the arts activities were identified as particularly illustrative of these changes. To investigate these in detail, MK transcribed relevant parts of workshop audio recordings and drew from play theory to interpret them. He also generated illustrations from photodocumentation, which he combined with interview/workshop transcripts, to visualize different perspectives on events, as shown in the findings. Continued memo writing helped in formulating findings.

Lastly, MK met virtually (due to COVID-19-related restrictions) with the partners who participated in the initial participatory analysis to discuss tentatively formulated findings. Partners confirmed the findings from their perspectives, but also provided feedback which added nuance to the final formulation.

### **3. Findings**

We use our modification of play elements from theory, to explain mechanisms supporting community engagement with EoL issues in arts activities. We identified four mechanisms: Creating permeable magic circles; Balancing restrictions and freedoms; Approaching dying, death, and loss through imagination and real-life experiences; and Continuing a sense of community after ending the arts workshops. In presenting our findings, we refer to examples from Studio DöBra arts activities. We chose to discuss one exemplar from each Studio DöBra iteration more in depth throughout the findings to demonstrate the diverse ways in which mechanisms acted in each iteration, and to illustrate ways in which various mechanisms acted in concert.

The Studio DöBra 1 exemplar comprises events from an arts workshop dealing with the question "Where do we end up after we die?" Participants explored this using travel as a metaphor for dying and death, creating descriptions of the afterlife as if it were a travel destination, and then building a vehicle to play-travel there. The Studio DöBra 2 exemplar consists of related events from the last three workshops of this iteration, revolving around a dead bird, brought to the workshops by a partner. Using sewing tools and fabrics of various colors and patterns, participants created images symbolizing the bird's life, death, and afterlife to decorate a large fabric sheet. During the final workshop, partners and participants held a funeral ceremony for the bird.

We use empirical data to illustrate findings. For confidentiality, partners and participants are given pseudonyms and personal information is omitted.

### *3.1. Creating Permeable Magic Circles*

We defined the Studio DöBra magic circle as the spatial and temporal boundaries of the arts workshops. Studio DöBra 1 workshops were held in different places—a children's library, an activity center for older adults, and at the artistic organization for children. The Studio DöBra 2 workshops all took place in a project room already used for weekly creative sessions by the participating older adults. All locations were closed to the public during workshops, creating spatial and temporal boundaries from ordinary life.

The Studio DöBra magic circle provided the context for intergenerational interaction and engagement with EoL issues. Within this, partners and participants sometimes used their imagination to engage with EoL issues, and sometimes introduced elements from ordinary life by sharing EoL-related experiences, such as the death of a family member or a pet. Additionally, our earlier analyses indicated that participants created spaces in their social networks for engaging with EoL issues stimulated through Studio DöBra participation [4]. We therefore conceptualize the Studio DöBra magic circle as a permeable boundary through which participants could introduce experiences from ordinary life into Studio DöBra and introduce elements from Studio DöBra into their ordinary lives, as illustrated in Figure 1. *Healthcare* **2021**, *9*, x 7 of 18

**Figure 1.** The Studio DöBra magic circle as a permeable boundary. **Figure 1.** The Studio DöBra magic circle as a permeable boundary.

In some events, smaller groups of participants seemed to gather into their own magic sub-circles. In the Studio DöBra 2 exemplar, the whole group discussed how birds are born from eggs and how the bird at the workshop might have died, e.g., by falling as it In some events, smaller groups of participants seemed to gather into their own magic sub-circles. In the Studio DöBra 2 exemplar, the whole group discussed how birds are born from eggs and how the bird at the workshop might have died, e.g., by falling as it was

was trying to fly. A smaller group of children began fantasizing among themselves, won-

Sandra: *I thought it was interesting how* [I] *reacted when it got silly, because I noticed how I reacted myself* […] *In my role, I thought, "oh, now maybe the older people take* 

Anna: *I think that I took a little offense, or I thought that they weren't… weren't really* 

Older adults reflecting on this in follow-up interviews did not appear to have taken offense, although some questioned children's understanding of the seriousness of death

Thus, events in which a group of participants segregated themselves into a magic sub-circle could create tensions when outsiders perceived the participants to be "not present" or if the play was interpreted as being not serious enough in relation to EoL issues. However, segregating into magic sub-circles may be a way for participants to engage with EoL issues in their own way. An unresolved challenge for partners was therefore the degree to which they should steer participants' engagement with EoL issues in response to

Studio DöBra arts activities were guided by partners trying to balance restrictions and freedoms. This occurred in part through the use of questions and topics. In the Studio DöBra 1 exemplar, descriptions of the afterlife destinations were based on predetermined questions, e.g., What language is spoken? and what sights are worth seeing? Restricting the questions seemed to give partners a sense of control over the EoL issues raised by participants. However, partners sometimes wondered if these restrictions inhibited

*They don't have the experience* […] *they're still direct. You could hear it* [when they talked about] *the kiwi and everything else they came up with, which is so delightful* 

*offense that it's not a respectful way to talk about death, but that it becomes…"* 

these tensions. They tried different approaches as described below.

Sandra: *Yes, that they were somewhere else.* 

Anna: *They were in their play…* 

as illustrated by Berit (older participant):

*3.2. Balancing Restrictions and Freedoms* 

*present.* 

*with children.* 

trying to fly. A smaller group of children began fantasizing among themselves, wondering if the bird was born from an Easter egg, killed by a meteor, and then transformed into a giant kiwi. During the reflective meeting which followed, partners discussed this:

Sandra: *I thought it was interesting how* [I] *reacted when it got silly, because I noticed how I reacted myself* [ . . . ] *In my role, I thought, "oh, now maybe the older people take offense that it's not a respectful way to talk about death, but that it becomes* . . . *"*

Anna: *I think that I took a little offense, or I thought that they weren't* . . . *weren't really present.*

Sandra: *Yes, that they were somewhere else.*

Anna: *They were in their play* . . .

Older adults reflecting on this in follow-up interviews did not appear to have taken offense, although some questioned children's understanding of the seriousness of death as illustrated by Berit (older participant):

*They don't have the experience* [ . . . ] *they're still direct. You could hear it* [when they talked about] *the kiwi and everything else they came up with, which is so delightful with children.*

Thus, events in which a group of participants segregated themselves into a magic subcircle could create tensions when outsiders perceived the participants to be "not present" or if the play was interpreted as being not serious enough in relation to EoL issues. However, segregating into magic sub-circles may be a way for participants to engage with EoL issues in their own way. An unresolved challenge for partners was therefore the degree to which they should steer participants' engagement with EoL issues in response to these tensions. They tried different approaches as described below.

### *3.2. Balancing Restrictions and Freedoms*

Studio DöBra arts activities were guided by partners trying to balance restrictions and freedoms. This occurred in part through the use of questions and topics. In the Studio DöBra 1 exemplar, descriptions of the afterlife destinations were based on predetermined questions, e.g., What language is spoken? and what sights are worth seeing? Restricting the questions seemed to give partners a sense of control over the EoL issues raised by participants. However, partners sometimes wondered if these restrictions inhibited participants from exploring their own questions. In a follow-up interview, Charlie (partner) proposed "You might ask questions that are a little more open . . . but then maybe it becomes less playful," thus suggesting that increasing freedoms might decrease playfulness. In another Studio DöBra 1 workshop, participants were asked to create alternative ways to measure time. Partners had assumed that participants would relate the passing of time to the EoL, but later reflected that this activity did not trigger the intended discussions. Thus, narrowly defined questions could restrict participants from freely exploring, whereas more open formats risked failing to initiate engagement with EoL issues.

Based on lessons learned from Studio DöBra 1, Studio DöBra 2 partners tried to achieve balance using the first workshop for participants to freely determine the EoL issues they wanted to address. Partners met with the children and older adults in separate groups in advance. Each group made a mind-map of their thoughts about dying, death, and loss. In smaller intergenerational groups in the first joint workshop, participants compared these mind-maps and together chose words or phrases as topics for collages. By relinquishing control over the topic selection, partners also shifted the responsibility for choosing topics to participants.

Another issue concerned the artistic processes and products, which were envisioned and preplanned by partners. Some partners and participants reflected on some of the arts activities' processes as not creating enough space for self-expression. Siv (older participant) explained:

*I wish we'd had more time to talk* [about EoL topics] *and less time to do arts and crafts. Because that took some of the focus.*

In the Studio DöBra 2 exemplar, partners envisioned that the whole fabric sheet would be filled with participants' images symbolizing the bird's life, death, and afterlife. However, they noticed that participants were creating small images that would not fill the fabric in the available time. Partners therefore told participants to create larger images, to which Alva (child) responded:

*"But we need to have respect for the bird, it cannot become ugly."*

Alva's remark pointed out that partners' expectations did not reflect her efforts to show respect in her own way. Partners thus controlled processes and products by imposing restrictions, which in this case were not aligned with participants' processes and expectations.

In reflective meetings, partners identified such tensions, and in response adjusted planning of following arts activities to try to better balance restrictions and freedoms. Partners also adjusted approaches during arts activities, as the following excerpt from the Studio DöBra 1 exemplar illustrates. Here, Sasha (partner) adjusted freedoms and restrictions to stimulate participants to play-travel to the afterlife destinations they had described, with the vehicle they had built.

Sasha (addressing participants): *It could be that I would decide, but* [ . . . ] *now you have this vehicle* [ . . . ] *and three* [afterlife destinations] *to travel to* [ . . . ] *so how are you going to travel there? Do you have any idea? This is a little bit like playing.*

[Participants have a lively discussion but seem uncertain about what to do.]

Sasha: *Everyone who built this, now you are going to test traveling to these three different destinations in your imagination* [ . . . ] *We're in a kind of airport now. How are you going to do this?*

[Participants discuss but still cannot agree.]

Sasha: *Shall we let each group take the others to their destination? You understand? Yes or no?*

[No clear response.]

Sasha: *OK, I'll make it simple. There are three groups, and each group decides how you travel to your destination. I decide that this group (points to one group) starts. You're the pilots, the others are the passengers.*

[Participants get ready.]

Sasha: *Everyone! Let's pretend this is a theatre or a film set, and we say 'ACTION!' so the film starts, the event of traveling to this destination.* [ . . . ]

[Participants get ready.]

Sasha: *OK!* [ . . . ] *ACTION!*

As participants seemed uncertain about what to do and could not agree, Sasha gradually decreased free choice by increasing restrictions. Sasha thus created a magic sub-circle by transforming the space into an imaginary airport and film set and marking temporal boundaries by saying "ACTION!" This led to children and older adults exploring different afterlife-scenarios together, as illustrated in Figure 2.

Although partners interpreted the event illustrated in Figure 2 as play, participants reflecting on this arts activity in follow-up interviews did not use this term, but rather described what they did, as illustrated by the following two excerpts:

Nils (child): *We got to build a vehicle, and then we got to sit in it and travel* [ . . . ] *to different* [ . . . ] *after-death-places.*

Bengt (older participant): *We talked about* . . . *up in heaven* [ . . . ] *we traveled up there with the spaceship* . . . *I said* [ . . . ] *it will take two hours maybe to travel there, and that's when* [ . . . ] *we came to the conclusion that there would be food* [ . . . ] *and then the little girl said that chewing gum was important.*

**Figure 2. Figure 2.**Traveling to after life (illustration by author Traveling to after life (illustration by author MK, based on a photograph of the workshop). MK, based on a photograph of the workshop).

When restrictions and freedoms were well-balanced, partners reflected on participants being independent in their execution of the arts activity and engagement with EoL issues:

Anna (partner): *We (referring to partners) all felt as if we weren't really needed, because they were so independent, both in* . . . *that they understood, that the assignments were clear, I think, and that they worked well together, the older adults and the children, and that the material was there so they helped each other technically and theoretically.* [ . . . ] *and that was a nice feeling. Then it felt like* . . . *we had prepared well, when we weren't needed.*

In conclusion, restrictions in aspects of arts activities enabled participants to explore EoL issues, but also risked diminishing both their agency and artistic freedom. Too much freedom could leave participants uncertain about both their roles and what was expected of them. Partners tried to find balance by creating a magic circle with a minimum of restrictions within which they felt in control and at the same time provided participants with enough freedoms and agency to engage with EoL issues on their own terms.

### *3.3. Balancing Restrictions and Freedoms*

Some partners reflected on finding it challenging to approach EoL issues, as death is part of our reality but at the same time abstract and difficult to grasp. Some partners described feeling insecure about facilitating arts activities addressing questions to which they do not have answers themselves. Additionally, as EoL-related experiences and beliefs are personal, project groups aimed to create a space which could contain and foster diverse perspectives. Partners therefore approached EoL issues in arts activities through a combination of imagination and real-life experiences.

The first project group often used metaphors as a means to call on participants' imaginations to explore EoL issues, e.g., travel as a metaphor for dying and death in the Studio DöBra 1 exemplar illustrated in Figure 2. The use of metaphors could blur the line between imagination and real-life in arts activities. Participants could, for example, use metaphors to talk about personal EoL experiences, questions, and beliefs, as in the following conversation from the Studio DöBra 1 exemplar, involving a small group of participants and partners:

Alex (child): *My mother says that my grandmother has gone on a trip, but she's dead.* [

. . . ] *She still says that she's gone on a trip* [ . . . ] *and I don't believe her.*

Sasha (partner): *How long has she been gone?*

Alex: [ . . . ] *since I was three.*

[ . . . ]

Bengt (older adult): *It's hard on kids, they ask, where did they go* [ . . . ] *it can be sensitive too* . . . *She's not around anymore.*

MK: *It's strange.*

Bengt (older adult): *It's strange. You grow up with your family, you can think that they'll be there forever and then they're gone, that's the way of life, the same with flowers in the field, during the summer there are beautiful flowers and then they die, after that there'll be new ones, those can be their children and grandchildren, the same with trees, everything. (Addressing Alex) Your mother gave birth to you, when you grow up you'll have children, that's how we are.*

Later, a partner overheard Ulla (older participant) say to the children that she would, perhaps soon, send them a postcard from the afterlife destination they had just described together. Thus, it seemed that metaphors were used to talk about personal EoL experiences, questions, and beliefs explicitly, as in the excerpt above, or implicitly, as with Ulla who seemed to indirectly convey her awareness of nearing the end-of-her-life.

In contrast, in the Studio DöBra 2 project group chose to approach the topic head-on by introducing the dead bird. Partners recognized that as adults they had expected death to be discussed seriously and wondered how they could create space in which everyone

has respect for one another's perspectives. The final Studio DöBra 2 workshop revolved around a burial ceremony for the dead bird. To create a serious and respectful atmosphere, partners changed some elements of the magic circle. A stronger sense of coming into the magic circle was created by keeping participants from entering the project room as they arrived, entering together instead. The table which usually displayed arts materials, now showcased red roses, a candle and a little box as a coffin for the dead bird. The other tables were covered with the fabric decorated with the images of the bird's life, death, and afterlife, sewn by participants. As participants came into this space, they were quiet and seemed moved, as exemplified by Siv (older participant):

*That was very beautiful, very beautiful.* [ . . . ] *The pretty fabric there and everything was so pretty.*

Jenny (partner) said:

*It became* . . . *very respectful,* [ . . . ] *calm, and harmonious when everyone went in together,* [ . . . ] *and the project starts, and then we leave other things outside.*

Partners planned the ceremony to include elements commonly found in Swedish funerals. Participants wrote farewell notes to the bird, after which they went outside to bury the bird under a tree and left flowers, as illustrated in Figure 3.

Quotes from participants in Figure 3 show that different perspectives about the funeral for the bird co-existed, but that not everyone shared their perspective openly. It seemed that some participants self-censored as they anticipated that their perspective might be deviant, as exemplified by Ida (child) and Berit (older participant). Furthermore, the line between imagination and real-life experiences became blurred, as shown by Ida (child) who seemed to perceive the group as using imagination, and Alva (child) and Berit (older participant) who described the ceremony as a real funeral. There appears to be a difference between the way imagination is used in this exemplar compared to the Studio DöBra 1 exemplar. Perhaps this is due to differences in the magic circle which in the Studio DöBra 1 exemplar was designed by partners to initiate a playful engagement with EoL issues using metaphors, whereas in the Studio DöBra 2 exemplar, partners designed the magic circle to create a serious and respectful atmosphere using elements of real-life funerals.

### *3.4. Continuing a Sense of Community after Ending the Arts Workshops*

As noted above, according to Huizinga play is characterized by the formation of a "play-community". This community tends to "stress their difference from the common world by disguise or other means" [19] p. 13. We found examples of this in both Studio DöBra iterations as certain events became symbols only understood by participants and partners. During the first Studio DöBra 1 workshop, participants and partners created and played a new form of Bingo. 'Bingo-death' became a defining symbol for Studio DöBra 1 as it was referred to throughout the workshops and interviews, with some saying they found it hard to express its' meaning to outsiders. During the first Studio DöBra 2 workshop, Emil (child) created an image of a flying pig for a collage about dying, and explained that he believed that when he dies, a flying pig will bring him to heaven. The image of the flying pig became symbolic for Studio DöBra 2, as participants and partners referred to it throughout workshops and interviews.

The tangible products of the arts activities were another factor bonding participants. Participants brought up the question of ownership by asking whether they could take the objects home. In Studio DöBra 1, partners explained that participants were collective owners, and that products would be saved in an archive to which participants would have access. In Studio DöBra 2, products were shown at the children's school, which then discarded them without further consultation.

**Figure 3.** Funeral for a bird (illustration by author MK, based on a photograph of the workshop).

During the last Studio DöBra 1 workshop, participants created an exhibition at the children's library, displaying their products accompanied by their texts and collages of workshop photographs, after which they role-played its' opening event. The day after, outsiders were invited to the formal opening of the exhibition. The funeral for the bird was also conceptualized as a goodbye to Studio DöBra 2. Alva (child) not only wrote a farewell note to the dead bird, but also to Studio DöBra, which she left in the project room:

*"It was a lot of fun to participate* [in Studio DöBra]*! It was a pity that the bird died because it could have lived longer and done more in life!"*

After the ceremony, a group of guests were invited to an event during which participants showed what they had created. While older adults said they had no-one to invite, children invited family and friends, and partners invited colleagues and journalists. Thus, the conclusions of both Studio DöBra iterations were marked by a final collective activity, after which the magic circle was opened to outsiders.

Although the temporal and spatial structures of the Studio DöBra magic circle ended at the conclusion of each iteration, reflections in follow-up interviews suggest that a sense of community continued to exist in various forms. This is in line with Huizinga's ideas about the continuation of play-communities: "The feeling of being 'apart together' in an exceptional situation, [ . . . ] and rejecting the usual norms, retains its magic beyond the duration of the individual game" [19]. Partners and participants from both Studio DöBra iterations talked about continuing to meet in passing in the neighborhood [4]; Studio DöBra 2 participants also talked about visiting the bird's grave. The Studio DöBra 1 exhibition was later shown at the activity center for older adults, and partners organized a reunion two months later.

### **4. Discussion**

We aimed to explore mechanisms in arts activities that support community engagement with EoL issues, through investigating Studio DöBra arts activities. Based on the partners' unexpected observation of play elements throughout the arts activities, we continued analysis with an abductive process using play theory. In doing so we modified theoretical play elements to explain mechanisms supporting engagement with EoL issues in arts activities. We found four mechanisms: (1) Creating permeable magic circles. The Studio DöBra magic circle provided the context for engagement with EoL issues, with participants sometimes segregating into magic sub-circles within which they engaged with EoL issues in their own ways. Partners struggled with the degree to which they should steer participant's engagement with EoL issues. (2) Partners aimed to balance restrictions and freedoms in arts activities to support participants' independent engagement with EoL issues and execution of arts activities, while also creating a sense of control for themselves. (3) Partners and participants approached EoL issues through both imagination and real-life experiences to deal with the potential sensitivity of the topic, but also to foster different perspectives of EoL-related experiences and beliefs. The line between imagination and real-life was not always clear in arts activities. (4) Continuing a sense of community after ending the arts workshops. We found indications of a sense of community developing through arts activities, and remaining after Studio DöBra ended, which supported continued engagement with EoL issues.

Although most literature about supporting EoL conversations through arts activities derives from healthcare, therapy, or community settings with ill or bereaved individuals [2,3,10], Studio DöBra was community-based and deliberately involved participants who were not imminently dying, in an effort to support early engagement with EoL issues. Our findings thus complement this literature with insights into mechanisms supporting engagement with EoL issues in community-based intergenerational arts activities. Our study has potential to contribute to theory-building that can inform arts activities supporting community engagement with EoL issues. One limitation of this abductive qualitative study is that it is based on play theory only. We suggest therefore that further research may not only build on our findings by critically applying mechanisms in the development and facilitation of arts activities to support community engagement in EoL issues, but might also draw on additional theories for further understanding.

In line with findings from Studio DöBra, literature points to the potential of arts initiatives and intergenerational programs to promote a sense of community [4,22–24]. It is noteworthy that the Studio DöBra magic circle shares features with McMillan's description of elements which promote a sense of community [25]. The Studio DöBra magic circle defines spatial and temporal boundaries, which McMillan points out as being essential for establishing a space in which individuals can identify as a group. McMillan contends that the community should provide a space in which members feel safe to share personal experiences [25]. This appeared to be occasionally challenging in Studio DöBra, as some participants seemed to self-censor when they felt their perspective was outside the norm. Self-censoring on the other hand, might also point to participants' agency in modulating their engagement with EoL issues [4].

EoL experiences may be considered 'unspeakable' as they are often sensitive and difficult to put into words [1]. The Studio DöBra magic circle provided time, space, and permission for engaging with EoL issues, thereby being responsive to participants' desire for spaces in which to talk about these issues [4,26]. While talking was part of engaging with EoL issues, partners and participants also engaged through acting, doing, and making, consistently using both imagination and real-life experiences.

During the initial participatory analysis phase, partners expressed surprise at the older participants' child-like playfulness in some arts activities, as in the Studio DöBra 1 exemplar. Partners wondered whether interaction with children may have helped catalyze this; however, our data does not allow for definitive conclusions. Hamayon argues that play in Western cultures is commonly seen as restricted to childhood and adult leisure [18]. Thus, partners' interpretation of older participants' play is likely to be influenced by these cultural norms. This implies that cultural norms may constrain the kinds of play adults engage in. It may be that intergenerational interaction lowered the threshold for child-like play. This is in line with the idea of a magic circle within which norms differ from ordinary life [19]. However, it remains unclear as to whether older adults would adopt similar playful engagement with EoL issues in the absence of children. Furthermore, gender roles may also affect older adults' engagement in arts activities with play elements; however, systematic investigation of this is beyond the scope of this study. These notions also point to a need to further consider cultural and gender norms regarding play and talking about EoL issues, when considering transferability of our findings to other settings [27].

One strength of this study is that it is based on data triangulating perspectives from partners, children, and older adults [28]. It is important to reiterate that the observations regarding play elements in the arts activities were made by partners. Participants did not use the term play as they reflected on their Studio DöBra participation in follow-up interviews. Thus, rather than conceptualizing all arts activities as play, we used play theory to investigate mechanisms in arts activities that support engagement with EoL issues. As the abductive analysis phase was led by researcher/partner MK, one role of co-authors as researchers external to Studio DöBra, was to support MK in critically reflecting on his own roles as partner and researcher.

Another strength of this study is the triangulation of different types of qualitative data [28], i.e., follow-up interviews, reflective meetings, and participant observations including photographs, audio recordings of conversations, and MK's field notes. As it was not always possible to produce high-quality audio recordings during arts workshops, other types of data were also used to analyze some of the verbal interaction, e.g., MK's fieldnotes and partners' reflective meetings. However, this may risk skewing the interpretations towards partner perspectives. Prior to the start of Studio DöBra, one partner expressed concerns that MK's participant observation methods, e.g., audio-recording conversations and photographing, might disturb participants' interaction and engagement, thereby risking compromising the magic circle. MK considered himself an insider in the magic circle through his role as partner, but others may have considered him an outsider due to his research activities. On the other hand, this method itself is in line with our conceptualization of the magic circle as a permeable boundary, allowing MK to be both participant and observer simultaneously.

Our findings contribute to understanding mechanisms in arts activities supporting community engagement with EoL issues. The notion of the Studio DöBra magic circle can help to understand ways in which other health promoting initiatives can provide time, space, and permission to engage with EoL issues in community contexts. By applying our modified play elements to arts activities aiming to support community engagement with EoL issues in other contexts and with other groups, we hope that researchers and practitioners can further explore these mechanisms and build on our findings. In Studio DöBra, partners adapted their approaches in response to tensions they observed and

reflections regarding their own roles. Reflective practice [14], e.g., gathering and reflecting on informal feedback from participants during arts activities, and reflective meetings in conjunction with workshops, supported partners in this process. We therefore suggest that transferring our findings to different contexts should be coupled with continuous reflective practice to adapt approaches sensitive to the local context and relevant for participants.

**Author Contributions:** Conceptualization, M.K., R.H., B.M.A. and C.T.; methodology, M.K., R.H., B.M.A. and C.T.; formal analysis, M.K., R.H., B.M.A. and C.T.; writing—original draft preparation, M.K.; writing—review and editing, M.K., R.H., B.M.A. and C.T.; visualization, M.K.; supervision, R.H., B.M.A. and C.T.; funding acquisition, C.T. All authors have read and agreed to the published version of the manuscript.

**Funding:** This work was supported by the Swedish Research Council for Health, Welfare and Working Life (FORTE) under Grant [2014-4071]; Investor AB (CT salary) under Grant [2-2314/2013]; Stockholm City Elder Care Bureau under Grant [243-662/2015]; and Karolinska Institutet's Engagement Grant 2018.

**Institutional Review Board Statement:** The study was conducted according to the guidelines of the Declaration of Helsinki, and approved by the Swedish ethical review board (2016/1517-31/5; 2018/825-32).

**Informed Consent Statement:** Informed consent was obtained from all subjects involved in the study.

**Data Availability Statement:** For original data, please contact the corresponding author; ethical approval does not cover making data openly accessible.

**Acknowledgments:** The authors thank partners, their community organizations, and the participating older adults, children and their parents for their contributions to this work. We also acknowledge the contributions of Olav Lindqvist and Malin Eneslätt to data generation. As one of MK's supervisors, Olav was a fundamental support in MK's doctoral project, but he died before the end of the second Studio DöBra iteration.

**Conflicts of Interest:** The authors declare no conflict of interest. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, or in the decision to publish the results.

### **References**


**Bruce Rumbold 1,\* and Samar M. Aoun 1,2**


**Abstract:** This article presents evidence found in a search of national and international literature for patient preferences concerning settings in which to receive palliative care and the appropriateness of different models of palliative care. The purpose was to inform end-of-life care policy and service development of the Western Australian Department of Health through a rapid review of the literature. It was found that consumer experience of palliative care is investigated poorly, and consumer contribution to service and policy design is limited and selective. Most patients experience a mix of settings during their illness, and evidence found by the review has more to do with qualities and values that will contribute to good end-of-life care in any location. Models of care do not make systematic use of the consumer data that are available to them, although an increasingly common theme is the need for integration of the various sources of care supporting dying people. It is equally clear that most integration models limit their attention to end-of-life care provided by health services. Transitions between settings merit further attention. We argue that models of care should take account of consumer experience not by incorporating generalised evidence but by co-creating services with local communities using a public health approach.

**Keywords:** palliative care; end-of-life care; consumer preferences; models of care; hospice; hospital; residential aged care; home care; public health approach; compassionate communities

### **1. Introduction**

Over the past decade, the claim that "end-of-life care is everyone's responsibility" has appeared in national and regional palliative care policies around the world. Comprehensive strategies through which this shared responsibility might be discharged are, however, far less common. In most cases, it is translated as a desire for 'community involvement' implemented through consumer consultation during policy and service development. This consultation is often individualised by involving 'representative' consumers, with little information provided as to how representative these selected consumers might be. However, more jurisdictions are beginning to draw upon a growing amount of quality assurance work on consumer experience in their policy formation.

In response to Recommendation Nine of the Western Australian (WA) Parliament Joint Select Committee on End-of-life Choices [1], the WA Department of Health commissioned an independent review of consumer perspectives of palliative care service models. The independent review comprised three phases: a literature review, a cross-sectional consumer survey and consultation forums with service providers.

The Department intended this literature review to clarify the extent to which end-oflife services address consumer needs or incorporate consumer feedback. The literature review is based on the global English language literature, but Australian studies are selected to illustrate findings where they are available.

**Citation:** Rumbold, B.; Aoun, S.M. Palliative and End-of-Life Care Service Models: To What Extent Are Consumer Perspectives Considered? *Healthcare* **2021**, *9*, 1286. https://doi.org/10.3390/ healthcare9101286

Academic Editors: Georg Bollig and John Rosenberg

Received: 23 August 2021 Accepted: 25 September 2021 Published: 28 September 2021

**Publisher's Note:** MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

**Copyright:** © 2021 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

### **2. Objectives**

The objectives of the whole independent review, including this literature review, were to:


### **3. Methodology**

Given the timeframe allocated for the review, it was necessary to develop a rapid review methodology [2]. While the debate continues around the definition of a rapid review [3], they typically include 'shortcuts' that circumvent some of the more timeconsuming aspects of systematic or even scoping reviews. Rigour is to some extent sacrificed for timeliness, and the quality of the review depends upon the shortcuts taken.

Our interest here was in identifying, as far as possible, a working consensus on evidence that would inform the 3 objectives indicated above. We decided that we would focus first upon systematic reviews and that we would use a Google Scholar search to identify these. The choice of Google Scholar was based both upon this database's capacity to identify relevant, high-quality literature [4,5] and its inclusion of some grey literature. In searching for data to inform a policy review, we were interested not only in peer-reviewed literature but in data sources taken into account in other policy formation processes. The material identified in a Google Scholar search would then be checked and complemented by further targeted keyword searches of databases, principally CINAHL and PubMed [6], while further systematic reviews would be sought in the Cochrane Library and the PROSPERO International Register.

The initial Google Scholar search used keywords [systematic review] + [palliative care] + [consumer] and was limited to the previous 5 years, identifying 15,900 references. The time span of 5 years was selected because consumer perspectives have only been included routinely in policies over the past 10–15 years, and we thought it reasonable to expect that systematic reviews conducted in the past 5 years would include the literature on which these policies were based. It was hoped that a focus upon systematic reviews would enhance rigour and incorporate, through their review processes, a body of evidence prior to the search cut-off date of 2016. The search was conducted on 2 computers to check for algorithmic bias, but no significant discrepancies were found. The references were ordered according to relevance, and the first 1000 were hand-searched to identify material directly relevant to the study objectives. After the first 1000 it was clear that references were of decreasing relevance, relating principally to only 1 of the combined search terms.

To supplement this material, we searched for studies other than systematic reviews that connected consumer experiences with their settings. These searches were not limited to the previous 5 years, but our interest was principally in studies that reflected the experience of contemporary care systems. These searches in CINAHL and PubMed used keyword combinations including the following:


Our interest here was developing insight into processes and experiences that lie behind the aggregated evidence reported in the systematic reviews.

### **4. Findings**

The findings of the rapid review were presented in narrative form and organised according to the three objectives. A scan of articles found in the Google Scholar search showed that systematic reviews of patient and carer experiences at end-of-life do not always focus on the context in which care was provided, while systematic reviews of service models do not always attend to patient and caregiver experiences. We decided to report on these strands separately, as limiting our findings to reviews that explicitly link experiences with particular settings would have neglected a considerable amount of rich data. The references provided in this article illustrate key points of our findings: it is not possible to provide here a complete list of articles.

### *4.1. Consumers' Needs and Preferences at End-of-Life*

Consumers of end-of-life services potentially comprise the entire population, but population-wide surveys tend to be limited to broad issues such as a preference to die at home [7] or the desirability of assisted dying legislation [8]. Studying the preferences of actual consumers of end-of-life services selects a sub-set of the population who have chosen to engage with these services. The extent to which these findings represent the whole population of dying people and carers is unclear.

Studies often investigate preferences in terms of location of care or model of care, but findings are predominantly about quality of care. The location of care and model of care may be secondary to these qualities being realized, although, of course, quality concerns may inform a preference for site and style of care.

There is reasonable consensus about the experiences and responsibilities of different participants in end-of-life care. Concerns common to patients, family, physicians and other caregivers included pain and symptom management, preparation for death, decisions about treatment management, achieving a sense of completion and being treated as a whole person. Important to patients, but less to physicians, include being mentally aware, having funeral arrangements made, not being a burden, helping others and achieving peace [9]. Within each group, differing perspectives were found concerning decisionmaking about life-sustaining treatments, dying at home and talking about the meaning of death.

These differences can impact the quality of care. Misalignment between the medical system and patient/family values and priorities frequently contributes to consumer dissatisfaction with care [10]. Yet, even when goals of care are aligned, information sharing can remain a problem [11], in part as a result of the increasingly varied sources of information accessed by patients and family caregivers [12].

Caregivers' effectiveness in responding to needs depended upon them knowing and adhering to patients' wishes. The extent to which health services are responsible for supporting caregivers continues to be debated, but traditionally palliative care has regarded patient and family as the unit of care. Hudson et al [13], for example, reported success with a psycho-educational program that provides information and skills to support informal caregiving in the chronic illness aspects of palliative care. A recent Cochrane review [14], however, found mixed evidence for the value of psychosocial interventions across the illness trajectory. Candy et al. [15] noted some evidence that strategies to help caregivers indirectly via patient care seemed to have some effect. Most of the other interventions that attempted to work directly with caregivers did not include practical support, although support in acquiring practical nursing skills has been shown to be important to caregivers [16]. Aoun et al. [17] used a stepped wedge cluster trial (n = 620) of a carer support intervention in community palliative care in WA, finding that priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Their

intervention reduced caregiver strain before bereavement and had positive outcomes post bereavement by achieving the preferred place of death through an agreement between patients and their caregivers [18]. The authors concluded that, within palliative care, the intervention with the potential to have the greatest 'reach', and available to a wide population of carers, is the one that adopts a comprehensive, person-centred approach to carer assessment in routine practice, ensuring that carers have the opportunity to consider and express their support needs so that service providers can deliver support tailored to their individual circumstances.

A theme emerging in recent studies is the need for practitioners to give more attention to patients' experience of living with their illness, not just to providing information about the diagnosis, prognosis, treatment and symptom control, important though these remain. Wang et al. [19] identified unmet care needs as emotional support, fatigue and being informed about benefits/side effects of treatment. Sheehan et al. [20] showed how treatment burden for patients and families includes understanding the condition, juggling monitoring and adjusting treatments, engaging others for support, time and financial issues. The burden does not end with a patient's admission to hospital, hospice, or aged care [21] but transforms into a different set of responsibilities, relationships with professional caregivers, care decisions and discharge planning.

Linking illness experience with other aspects of daily living is vital for preserving quality of life. For example, in a small NSW study of older adults with terminal illness [22], participants describe their needs in the following domains: quality of life, sense of control, life on hold, need for health system support, being at home, talking about death and competent and caring health professionals. Rand et al. [23] found that patients with advanced cancer had life goals that resembled those of healthy populations and that treatment goals were separate from these life goals. A capacity to align treatment and life goals shaped the final stages of illness, and those who valued cure the highest had the worst psychological adjustment [23]. This supports the case that early palliative care intervention, introduced alongside treatment options allows better preparation and facilitates informed choice [24,25]. Collins et al. [26], however, reported that consumers' perceptions can work against early introduction of palliative care if palliative care is associated in their minds with diminished care, diminished possibility and diminished choice. Aoun [27] proposed early integration of a palliative approach in the care plans of people diagnosed with Motor Neurone Disease (MND), arguing that this can optimise their quality of life by relieving symptoms, providing emotional, psychological and spiritual support pre-bereavement, minimising barriers to a good death and supporting the family post-bereavement. Knowledge and expertise need to be extended beyond the domain of specialist palliative care services to include the full scope of health and community-based services providing care, mostly at home.

Dalal and Bruera [28] were more positive about the contribution of early palliative care intervention, in part because of the effect of palliative care in reducing costs of (futile) aggressive treatment and thus reducing financial pressure on US families. Hospice participation in care through attention to values and multidimensional needs allows care to be planned and reduces costs associated with a narrow focus on the disease, which can cause further morbidity due to harmful interventions [24]. While these studies reflect the US context, financial constraints are also found to affect treatment choices and quality of life of cancer patients in Australia's universal healthcare system [29].

Recent reviews point out that studies of needs seldom consider the full treatment pathway/cancer journey [30,31]. With advanced cancer increasingly experienced as a chronic illness [32], needs remain diverse, requiring greater attention to the illness experience of particular people. Other studies report similarly on the end-of-life needs of populations belonging to specific illness groups. Stow et al. [33] found the needs of frail people to be similar to those with advanced cancer, but that a frail person's desire for reduced interventions was not always observed. In cases where palliative care was provided to frail people, their relatives often rated it lower in comparison to the relatives of those with

cancer, presumably because palliative care staff lacked familiarity with frailty and the less predictable trajectory of dying. The implication here, that end-of-life care needs to be provided by people familiar with the particular needs of a population, is reinforced for MND [27,34] and intellectual disability [35].

### 4.1.1. Collecting Data on Consumer Engagement

Most palliative care programs collect some form of internal consumer data, but few publish their findings. Consumer satisfaction scores are often collected by palliative care peak bodies, but this activity tends to be more a marketing measure than a focused enquiry into quality. To date, the only program that has consistently collected consumer data in granular detail across a health system is the Views Of Informal Caregivers Evaluation of Services (VOICES), commissioned by the UK Department of Health [36], and badged as the National Survey of Bereaved People (VOICES) once managed by the Office for National Statistics (ons.gov.uk). The survey investigated the quality of care delivered in the last three months of life for adults who died in England, using a sample of approximately 30% of all deaths over a four-month period selected from the death registration database.

The dataset continues to be used retrospectively [37] in various ways: identifying associations between the place of death and Advance Care Plans [38] or end-of-life experiences for particular populations such as people with intellectual disability [37]. Modified versions of the survey have also been used in comparing end-of-life care across specific settings [39].

The closest equivalent in Australia is the FAMCARE-2 tool (Family Satisfaction with Palliative Care), which measures satisfaction across four domains, management of physical symptoms and comfort, provision of information, family support and patient psychological care. The validation study [40] indicated lower levels of satisfaction in response to the subscales 'provision of information' and 'family support,' consistent with VOICES findings. FAMCARE-2 is administered periodically in selected services by Australia's Palliative Care Outcomes Collaboration (PCOC). A survey of 1592 caregivers across 49 palliative care services in 2016 [41] found generally high levels of satisfaction and positive experiences of care. Scores were higher for inpatient care on three of the four domains, provision of information being the exception. Dissatisfaction with information provision was higher for older carers, particularly around carer payments, while home carers reported that information to support them with practical caring tasks was inadequate. These findings were consistent with the Australian EOL and Bereavement Study [42].

### 4.1.2. End-of-Life Needs in Particular Settings

A few studies directly investigated patients' perspectives of differing end-of-life services—home care, residential care, hospital, hospice—but it is still necessary to understand what each of these services provides and how they are aligned within that particular health system in order to compare the findings of the different studies or translate them to another context. Possible confounding issues are distinguishing if a hospital setting includes the care of palliative care consult teams or if residential aged care setting accesses care from community-based palliative care programs.

### Hospital

Six themes common to patients and families – expert care, effective communication and shared decision-making, respectful and compassionate care, adequate environment for care, family involvement and financial affairs – were identified by Virdun et al. [43] as important in hospital end-of-life care. Patients added the theme of maintenance of sense of self, while families added patient safety, preparation for death, care for family after death and enabling patient choice at end-of-life. A recent study [44] in five NSW hospitals confirmed these domains and suggested two more, nutritional needs and access to clinical specialists. These findings were supported by a recent review by Wong et al. [45].

Seldom, if ever, were all these areas of importance adequately addressed. While not coinciding with the eight essential elements of Australia's National Safety and Quality Health Service Standards [46] for comprehensive care at the end-of-life, the themes identified by Virdun et al. [43] were consistent with them. Bloomer et al. [47], in auditing hospitals against these national ACSQHC guidelines, found clear scope for improvement, particularly in patient-centred care, family involvement, describing and enacting goals of care and using triggers to prompt care. These are, in fact, all the essential elements for the process of end-of-life care [46] and presumably point to deficits in the underlying organisational pre-requisites. It might also be noted that the standards specify access to specialist palliative care advice as one of the requirements of any comprehensive end-of-life care plan.

Will et al. [48] conducted a review that underlined the importance of multi-disciplinary team care in patient satisfaction with care, particularly when teams comprise more than two professions (that is, include allied health practitioners) and engage the patient through more comprehensive team practice (that is, practice that involves more than a multidisciplinary ward round).

A recurring issue with hospital end-of-life care is non-beneficial treatment. Cardona-Morrell et al. [49] reviewed the treatment of older patients near end-of-life and found that on average 1/3 received non-beneficial treatments including dialysis, radiotherapy, transfusions and life support treatment and that up to 2/3 of admissions were not mandated by therapeutic need but a lack of alternative strategies for care. Taylor et al. [2], in a scoping review of initiatives to reduce inappropriate or non-beneficial hospital admissions, found a wide range of strategies being employed, but that evidence for their effectiveness was generally limited or absent.

Singotani et al. [50] pointed out that most studies of unplanned readmissions were evaluated from the hospital's perspective in terms of patients' failure in self-management or problems with integrated care. Studies differed as to which causes were preventable, nor did they take into account causes beyond the scope of the hospital. Trankle's [51] small survey of specialist physicians even questioned whether a good death was possible in Australian critical and acute care settings, noting that 70% of all deaths were in institutions, and that 15–20% of those took place in ICU where a quarter of patients were ventilated and almost 40% died in pain.

### Residential Aged Care

A Cochrane review found little evidence for the effectiveness of interventions intended to improve palliative care in nursing homes [52]. Tilden et al. [53] noted the problem of high staff turnover and the high personal and economic cost that works against quality of care. They argued that investment in staff training to improve knowledge and skills and increase job satisfaction would improve staff retention and reduce transfers to hospital for conditions—including end-of-life care—that should be managed on-site. There was some indication within the New Zealand context [54] that the nature and quality of end-of-life care can be contingent upon a General Practitioner's engagement with a residential aged care facility. This finding is confirmed in studies of rural RACFs in the Monaro region of Australia, where monthly Needs Rounds involving RAC staff and local GPs increased capacity to provide end-of-life care [55].

Milte et al. [56] surveyed 17 nursing homes across four Australian states to ascertain the characteristics most valued by residents and family members. While residents receiving palliative care were excluded, these values have important implications for understanding the context with which palliative care ideally might articulate. Belonging (feeling at home) is of primary importance to residents, as is flexibility in the care routines provided by staff.

### Residential Hospice

There are surprisingly few systematic reviews of the quality of residential hospice care. Weerakkody et al. [57], in a study involving 100 bereaved caregivers of people who died in a Toronto (Canada) hospice, found that quality (measured by the Quality of Dying and Death- QODD) was average to above average and that higher scores were reported by those whose relative had been admitted for more than one week. A possible explanation can be inferred from the evaluation by Lucey et al. [58] of patients admitted to Milford Hospice, Limerick, Eire. They found nearly half were unstable on admission, and it took three days for 70% of these patients to be stabilised. That is, longer admissions were needed to be of clinical benefit, let alone to access other forms of support provided in the hospice.

### Home

Reviews by Stajduhar et al. [59] and Funk et al. [60] highlighted the need for a systematic study of home-based family caregiving at the end-of-life. Their findings identified the ways caregiver experience can be disrupted as demands change and different services become involved, outlined forms of support required, discussed barriers to receiving that support (often the reluctance of caregivers to articulate their own needs) and explored caregivers' role in decision-making. A further theme identified was the rewards of caregiving as a source of comfort, strength and meaning alongside the stress and challenges involved. A Cochrane review found that home palliative care more than doubles the chances of dying at home and reduced symptom burden without increasing grief for family caregivers after the patient died [61]. Another Cochrane review of the impact of hospital at home programs (Shepperd et al. [62]) made similar findings.

A small Dutch study [63] identified medical proficiency in the primary care team, including clarity about procedures and pro-active approach, as essential elements of highquality palliative care at home. Barriers to dying at home identified by O'Brien and Jack [64] were, from a service perspective, poor discharge planning, difficulty in accessing equipment and services and inadequate out-of-hours service provision.

Debate continues as to whether death at home should be an outcome measure [65]. While well-being may be greater at home, preference alone is not enough to ensure death at home and instead is influenced by other factors such as extended family support, availability of home care and affluence [66]. People who have had a stroke or people with dementia are less likely to die in their preferred place [67]. A longitudinal study to elicit the end-of-life preferences of terminally ill people who live alone was undertaken in community palliative care in WA [68]. Congruence between the preferred and actual place of death shifted from 53% based on preferences at baseline to 41% based on preferences at follow-up. For nearly half of the patients in this study, home was not their preferred location for dying. The authors suggested that the ability to die in the place of choice (rather than home) needs to be looked at as a possible indicator of meeting patient needs or as a quality measure in end-of-life care.

The critical role of the GP in supporting care in the home through linkage with specialist palliative care services is shown in the review by Carmont et al. [69]. A nationwide integrated information network for primary end-of-life care in Australia was designed and piloted, and early findings show that palliative care training for GPs improves the uptake of ACP in general practice [70].

### 4.1.3. Comparative Studies of Care in Different Settings

The English National Bereavement Survey [71] reviewed care in the last three months of life and consistently found the overall quality of care in hospitals to be worse than any other setting, with 30% rating hospital care as fair or poor. Care in care homes, hospices or own homes was rated highly (80% as outstanding, excellent, or good). The overall quality of care ratings did not vary significantly for different illnesses, except that those responding on behalf of cancer patients gave more outstanding ratings (nearly 50%) than for cardiovascular patients (less than 40%). In 2015, but not 2014, females were perceived by respondents as receiving better care than males. Excellent ratings for quality of care were highest for hospices (76%) and lowest for urgent care services (26%). The majority of informal caregivers agreed that their information and communication needs were met. About 20% said that decisions were made about the patient's care that the patient would not have wanted. An overwhelming majority felt the person had died in the right place, even if at times that place had not been the person's expressed preference.

Sandsdalen et al. [72] conducted a study using the Quality from the Patients' Perspective for Palliative Care (QPP-PC) measure of 191 Norwegian palliative patients in hospice inpatient care, hospice day care, palliative care units in nursing homes and home care. Perceptions of care quality were higher for hospice inpatient care than other settings, although perceptions of subjective importance did not vary across settings. In all settings, the prime area for improvement related to receiving information.

The Australian End-of-life and Bereavement Survey found significant differences in the quality of palliative care received between the three settings: community, inpatient/hospice and nursing home. More respondents rated inpatient settings as excellent/good (93%) than care in the community (81%) or care in nursing homes (73%) [42]. This, to some degree, contrasts with de Boer et al. (2017), who found relatives more positive about care received from palliative care teams at home or in hospice than in the hospital setting. Their study drew upon data from 14 European countries for deaths from a wide range of causes. They noted that the psychosocial support provided in the hospital or aged care was less than at the home or hospice and that the level of satisfaction with a setting also varied according to the illness from which a person had died. In the Australian study, most in the palliative care group had died from cancer, and the higher rating for inpatient care may reflect both the complexity of managing symptoms in this group and the wide availability of hospital palliative care consult teams.

This review of the evidence related to consumer preferences suggests that best practice is defined more by the qualities and values embedded in the care provided, not a particular program structure or setting. The most appropriate model of care will be one that is able to respond flexibly to this variety of needs across the illness journey, with that flexibility extending to end-of-life experiences.

### *4.2. Models of Care*

Many health systems have over the past decade reviewed and revised their end-of-life care strategies, usually in an attempt to better integrate palliative care with the overall health system. The majority of these revised end-of-life service models are based on practitioners' perceptions of patients' needs. That is, although patients' responses may be considered in revising services and in evaluating the effectiveness of the revisions, service design has tended to give priority to solving health service problems more than patients' perspectives of their need of preference for care. A rich variety of reports and reviews is available from selected health services and peak bodies within their jurisdiction. Peer-reviewed studies more often focus on a single aspect of the multi-faceted end-of-life care system. Models draw upon such studies in the hope that the sum will be greater than the parts.

A theme common to the recent literature on models of care is the need for integration. It is equally clear that most integration models being put forward limit their attention to end-of-life care provided by health services.

### Integrated Palliative Care

Luckett et al. [73], in a rapid review, concluded that effective palliative care models integrated specialist expertise with primary and community care services and enabled transitions across settings, including residential aged care. Their focus was on elements relevant to the Australian health system—that is, the terminology was aligned with Australian definitions. They also noted that:


Reviews of palliative care integration in Europe have also been carried out [75,76]. The definition of integrated palliative care (IPC) developed by van Beek et al. [76] is:

"Integrated palliative care involves bringing together administrative, organisational, clinical and service aspects in order to realise the continuity of care between all actors involved in the care network of patients receiving palliative care. It aims to achieve quality of life and a well-supported dying process for the patient and the family in collaboration with all the caregivers (paid and unpaid)" [76] (p2).

For the purposes of their review, they used Emanuel et al.'s [77] IPC criteria.

The same research team identified 14 empirically tested integrative models [75] that showed the benefits of involving a multidisciplinary palliative care team, namely better symptom control, less caregiver burden, improved continuity and coordination of care, fewer admissions, cost effectiveness and patients dying in their preferred place. On this basis, they proposed a generic framework for integrated palliative care in cancer and chronic disease. Interestingly, however, the framework they propose pays no attention to engaging primary and community care, or informal caregivers, although these contributors are an integral part of both their own definition of ICP above [76] and Emanuel et al.'s [77] criteria.

Other reviews considered integration of care at particular points of the illness trajectory or for specific illness journeys. For example, Gardiner et al. [78] reviewed effective collaborative partnerships between generalist and specialist palliative care services, identified by good communication between providers, clear delineation of roles and responsibilities, opportunities for shared learning and coordination shown in timely access to specialist services. These same conditions are endorsed, albeit by identifying barriers to integrating primary and specialist cancer care, by Dossett et al. [79]. Gardiner et al. [78] did not, however, find any distinctive model of collaborative working undergirding these partnerships. The same team reviewed the transition from curative care to palliative care [78], and again found multidisciplinary collaboration to be a key requirement for navigating this complex transition. Other studies considered integration of respiratory and palliative care [80] and oncology and palliative care [81]. Again, communication and multidisciplinary practice were found to be core elements of successful practice.

A variety of triage tools to assist clinicians in monitoring transitions is being developed. El Mokhallati et al. [82] reviewed 10 screening tools, noting the disparity between those that focus primarily on prognosis and functional decline and those that anticipate palliative needs. They found the predictive ability of all tools to be limited. The recently validated Responding to Urgency of Need in Palliative Care (RUN-PC) triage tool is an important step in making triage more transparent and evidence-based [83]. While these tools support clinical judgement, the pre-conditions of collaborative stance and multidisciplinary practice are essential for their effective use.

The published literature overwhelmingly addresses integration issues that involve health services, with little or no attention paid to integration of these services with informal care. Schulz et al. [84], through a review of family caregiving literature, provided some useful insights into the impact health services can have upon family caregivers as illness progresses and service delivery responds to increasing demand. They found that family caregivers, while still a major source of support to the seriously ill patient, are often marginalised by healthcare systems and procedures. Familiar routines of home care are often now supplemented, or replaced, by further medical and hospital appointments or admissions, additional decision-making about treatment and support and new care issues to be managed at home. The family caregiver also becomes a major source of information for a number of new specialist providers. These additional responsibilities require new knowledge and skills that would ideally be provided by the specialised health service partners being brought into the expanded care network. This introduces a further range of responsibilities that most specialist providers do not recognise and for which they are often not equipped. Yet facilitating partnerships between formal and informal caregivers includes formal caregivers being able to identify and assess the capacity of informal caregivers, support them and equip them to engage with the new challenges.

### *4.3. Appropriateness of Different Models of Palliative Care*

The research literature tends to report palliative care outcomes in terms of the setting in which care is received, but both within and across those settings, a range of organisational models can be found [73,85]. Comparisons of models based on such studies can only be performed in general descriptive terms because of the different outcome and process measures used in various studies and different health jurisdictions. As reported above, criteria for evaluating the effectiveness of services usually focus on symptom control and the delivery of clinical care: attention to consumer engagement has been minimal. Brereton et al. [85] note that the majority of evaluation studies demonstrate the overall benefit of providing palliative care compared with other forms of care available in that palliative care service's health system. There is seldom any information about the components of the palliative intervention or the comparators against which benefit is shown. They conclude:

"Irrespective of setting or patient characteristics, models of palliative care appear to show benefits and some models of palliative care may reduce total healthcare costs. However, much more detailed and systematic reporting of components and agreement about outcome measures is essential to understand the key components and successfully replicate effective organisational models" [85], p. 781.

While there is no consensus about organisational models, there is agreement that certain quality standards for care should be the goal of care in any setting. The Australian National Consensus Statement on essentials of end-of-life care [86] applies to all end-oflife care programs, although how care should be provided is not prescribed. The NICE guidelines [87] address what are effectively the same quality standards but do this in ways that make implementation clear and provide links to explore further the rationale for each guideline and the evidence supporting it. Impact findings for the guidelines are also provided [88].

Cost-effectiveness is clearly an important consideration in developing palliative care services. Unfortunately, comparisons of the costs of different palliative care models, as Groeneveld et al. [89] show, encounter problems similar to those identified by Brereton et al. [85]. Funding mechanisms are country-specific and often tenuously aligned with overall health policy [89,90]. It can be shown that palliative care is cost-effective, with savings improved by earlier palliative interventions in cases of multi-morbidity and the use of palliative care strategies that reduce or avoid hospitalisation. For example, in Australia, elderly cancer cohorts incur greater costs at the end-of-life, primarily through hospitalization—those who die in residential aged care incur half the costs of those who die in hospital [91]—although it might also be noted that the survey undertaken for this review indicates a lower quality of care for residents of aged care. Groeneveld et al. [89] suggest six 'desirable features' for palliative care funding models:


Duckett [90] argues that, for these features to be realised, palliative care funding needs to move toward an activity-based funding model with agreed classification.

It is also notable that these features point toward the integration of specialist and generalist services. As noted in our review, the most recent literature shows a move from comparing settings toward integrating services across the illness journey. This integration seeks to extend the effectiveness and reach of palliative care by better connecting generalist and specialist palliative care in ways that are appropriate to each person's illness journey. A key component of integration, Luckett et al. [73] suggested, was case management, which is the service element most common to models of care that are effective. It cannot, however, be assumed that providing case management will of itself achieve integration: case management is usually present as part of quite complex and diverse interventions. But it does appear that case management allows consumers to make the best use of the resources available to them.

### 4.3.1. Involving the Community: Public Health Approaches to End-of-Life Care

It is clear from the evidence concerning end-of-life need that any comprehensive model of care must take very seriously the intersection between health service provision and social network support. Yet, while integrated palliative care guidelines acknowledge the need to involve communities and unpaid caregivers, in practice most service models continue to be designed within the boundaries of the health system.

Over the past decade in particular, palliative care service guidelines have increasingly sought to take consumer experience into account. This has been attempted, for the most part, by collecting data from consumers on their experience, or involving a representative consumer in a reference group, then proceeding to design a health service response to the consumer needs that are of central interest to palliative care practitioners. Public health approaches have a different strategy that focuses less upon identifying patient and family perspectives to which services should develop a response, more upon building systems of care that allow active participation of people and their social networks in the care provided at end-of-life. That is, public health approaches to palliative care pay attention not only to integrating care within health services but also to connecting informal care—a patient's existing social networks and local community assets—with the care provided by the formal services. By doing this, a public health approach extends issues such as management, accreditation and governance beyond the health sector alone.

A comprehensive public health approach sees people at the centre of care [92]. Rather than individual care, public health approaches give focus and substance to clinical palliative care's notion of 'patient-and-family' as the unit of care, an approach represented in the circles of care model [93]. End-of-life care systems, to be effective, must not only recognise this 'patient and social network' context but ensure that professional care, service delivery and policy enhance the care provided by the person's social network. The unfortunate reality of most health service programs is that they can actively disrupt rather than support that network [94].

Evidence for the effectiveness of this public health approach to care is accumulating rapidly. The scoping review by Daryll Archibald and colleagues [95] is nearing publication. Another overview of relevant evidence and resources is in the report by Nous "Compassionate communities: implementation guide for community approaches to end-of-life care" [96].

### 4.3.2. Building Community Capacity to Care

Most public health initiatives in palliative care began with identifying community members interested in end-of-life care and building upon their knowledge and skills to communicate these to family, friends and neighbours. Often, although not always, these people were already connected as volunteers with community palliative care services, and through their wider community engagement were able to connect these services with other community groups. One early program, funded by the Victorian Department of Health through the "Strengthening Palliative Care through Health Promotion 2004–2007" program, is outlined in Salau et al. [97].

Around that time, Australian efforts tended to be initiated by palliative care services through their volunteer programs. However, such a strategy has limited community engagement, largely due to the way services have managed volunteer programs. Volunteers have extended the reach of the services more than developed community capacity [98]. Some services in the UK took a different approach, in effect building community capacity with no expectation of ongoing management. Cronin [99] reported on a 2010 experiment to assist local communities by training free-standing volunteer networks to support the most frail and vulnerable in their midst. Their focus was on improving social connection, but they found that consistently after hours call-outs to GP services or trips to EDs declined significantly in the areas where these trained volunteers operated.

The most systematic development of this finding to date has been the connectors project [100] in Frome, Somerset. The sole GP practice in Frome cares for a population of around 28,000 people. The intervention involved rigorous identification of all those in need, not limited by age or diagnosis, followed by care planning and referral to a community development service for goal setting and social network enhancement. This service, Health Connections Mendip (HCM), was established as part of the project. Participants were selected by 'clinical impression'. Palliative patients are thus part of the mix, not treated as a separate cohort. The GP clinic works in partnership with Health Connections Mendip, which is operated by community development workers known as health connectors. HCM generates and maintains a comprehensive Mendip Directory, offers one-on-one care planning, and trains and then supports volunteer Community Connectors. Health connectors are the bridge between clinic and community; community connectors are conversation partners/promoters of the program. The research team was able to demonstrate over a three-year period a 14% reduction of unplanned admissions to Emergency Departments, compared with a 28.5% increase in the remainder of Somerset.

The Frome project combined capacity building with social network enhancement, informed by work carried out by the Western Sydney University Care at End-of-Life Research Group. Rather than extend the reach of community palliative care services as earlier capacity-building approaches had carried out, the latter group identified social networks in the community that had already cared for a dying friend or relative and explored the experiences of members in the networks [94,101–107]. They found that effective networks had at least one person with previous experience of dying (not necessarily at home); comprised family, friends and work colleagues; and were most likely to exist when the dying person or primary carer was already embedded in a community with well-established networks (hence the emphasis on enhancing social networks in subsequent public health interventions). Service providers, while essential, were part of the outer network, together with employers and people who worked in local businesses, schools, clubs and community groups (as illustrated in the circles of care diagram).

Wegleitner et al. [108,109] implemented a social networks enhancement project in Landgren, Austria, a town of 8000 people with a strong reputation for civic action but lacking a specialised palliative care service. As part of a large-scale community research project they used a participatory action method first to investigate, and then enhance, the networks through which elderly people were supported in the final years of their lives. They identified 'ingredients' of these webs of caring relationships as a focus on relationships and social systems; creating reflective spaces; strengthening social capital; and addressing inequalities in care. All these ingredients, they noted, needed to be cultivated through a process of co-creation. The social networks created a 'third social space' between private households and institutional care, but maintaining this space involved resisting the privatisation of care that splits care between commercial and private provision.

Compassionate communities are the descriptor used to capture much of this community development work [108,110,111]. The concept reflects the priority public health gives to settings: if compassion—recognition of our fundamental human connectedness—

characterises our communities, then they should be settings in which living and dying can be healthy. The concept has been operationalised in the Compassionate City Charter (https://www.phpci.org/tools, accessed on 28 September 2021) to which a number of UK cities, and increasingly cities in other places, including Australia, have subscribed.

The Compassion Charter is one strategy for developing civic engagement around end-of-life issues. Sallnow and Paul [112] showed how community engagement could range from services providing information to a community through to active co-design of services with a community. The latter is the stance that best reflects a public health approach. Models for citizen-led approaches to health and care include the Wigan local government project [113] and citizens' juries for health policy decision-making [114]. Co-design has been shown to be effective in developing programs with vulnerable communities [115,116]. Endof-life care applications have been explored by Chung et al. [117] and McCarron et al. [118].

### 4.3.3. Integrated Public Health Palliative Care

To build a system of end-of-life care that connects health services with community services, and formal care with informal care, further development of palliative care linkages with primary care and aged care, and with civic programs that mobilise and nurture compassionate care in local communities is needed. Tools and resources to create compassionate communities or, more specifically, to create, support and maintain social networks with capacity to care for each other at the end-of-life, have been developed in a variety of jurisdictions. The principal resources are available through Public Health Palliative Care International (https://www.phpci.org/tools accessed on 28 September, 2021). This site also provides links to projects where particular tools are being implemented.

Evidence is being produced but, as with many community-development projects, larger-scale implementation requires longer time scales to produce sustainable change. The core empirical evidence supporting the compassionate communities approach continues to be the social networks studies outlined above, together with case study collections [109,119]. Specific Australian resources include End-of-life Care at Home [104], Compassionate Communities: An implementation guide for community approaches to end-of-life care [96], Greater Choice for At Home Palliative Care Evaluation [120] and the Healthy End-of-life Project [121]. Examples of Australian projects that can contribute to an Essentials Model of Palliative Care [122] include The South West Compassionate Communities Connector Project [123] and The Australian End-of-life and Bereavement Survey [17,18,42,124]. This body of work, innovative in content, conceptual model and recruitment approach, has challenged the existing bereavement support structure and provision and influenced practice and policy in the UK and Ireland [125].

### **5. Discussion**

This review, which has an Australian focus, draws upon national and international literature to gather evidence concerning patient preferences for settings in which to receive palliative care (home, residential care, hospital, hospice or a mix) and to review the usefulness of different models of palliative care.

The findings require us to qualify the objectives of the review, which assume that the locus of care—hospital, home, hospice, residential aged care—could lead to different experiences of care and levels of satisfaction with care. In practice, most patients experience a mix of settings during their illness, but the findings of the review have more to do with qualities and values that will contribute to good end-of-life care in any location, not a choice of setting as such. Of course, specific needs may be best met in particular settings, but preferences are based on needs being met at that stage in the illness journey. The hierarchy of need will vary from person to person, and consumers should be involved in negotiating transitions between different locations, recognising that giving priority to one need (for example, hospital admission to adjust medications) may inevitably reduce the extent to which another need is met (security provided by home care). The finding that good care can be achieved in a variety of locations is encouraging, but issues raised by transitions between settings merit further attention.

Evidence for the benefit of extending a palliative approach to all at end-of-life is strong. There is no compelling evidence that points to a preferred organisational model. End-of-life needs of particular groups incorporate the needs associated with their illness or condition. Thus, end-of-life care should be provided collaboratively, led as much as possible by primary care providers with expertise in a person's illness experience, enhanced by care from those with end-of-life expertise.

There appears to be overall a preference for receiving care at home, but this does not mean that patients or family members are dissatisfied with care in other contexts. While the literature increasingly supports an illness journey perspective, there are insufficient data concerning patients' overall illness journeys to draw any conclusions about a preferred mix of sites of care. An illness journey perspective is, however, linked with early palliative care referral, perhaps because palliative care can then perform a case management role through the illness course.

Consumer experience of palliative care is investigated poorly, and consumer contribution to service and policy design is limited and selective. It is important that a strategy for receiving consistent and regular consumer feedback, such as FAMCARE-2 or a Palliative Care Experience survey, be introduced into the sector's Continuous Quality Improvement processes.

The literature examined here agrees on core relational values that should undergird treatment, and that patients' and families' needs around information sharing require further practical attention. These needs appear to be independent of setting and to be more related to consumers' capacity to engage with the process of care, that is, consumers need guidance on how they can contribute, particularly during transitions in care, not merely information about treatment being provided. The literature calls for a person-centred approach from health services but the lack of clarity surrounding this phrase requires more detailed description of what this might involve.

Current literature is less interested in comparing models of care, more interested in the integration of existing approaches to palliative care. Thus the NICE service delivery guidelines for end-of-life care for adults [87], the most recent and comprehensive available, provide evidence and recommend strategy, but emphasise that translation of the guidelines into particular settings requires professional judgement exercised in consultation with the individual and family or carers. The integrated models being put forward in the past few years tend to focus more upon the potential role of primary care in facilitating integration, although there is reference to the place of informal caregivers and community support in meeting consumer need. In the Australian context this suggests the need for Primary Health Networks (PHNs) to be equipped as hubs that connect community services with aged care and palliative care services, and for GPs to be seen as an integral part of end-of-life care. In terms of costs, it seems clear that any palliative care strategy that reduces hospitalisation is likely to be cost-effective. It also seems imperative that aged care services have a greater capacity for end-of-life care on-site and can thus reduce costly non-beneficial hospital admissions. While inappropriate end-of-life care in hospital settings can be addressed to a certain degree by Advance Care Plans that include refusal of non-beneficial treatment, non-beneficial admissions remain a systemic issue that must be addressed beyond the acute care setting.

Some models for integrating different aspects of health services are available. There are fewer models that consider the integration of health services with other social and community services, and fewer again that explore collaboration and integration of formal services with informal networks of care. Despite their rhetoric about community engagement and involvement of informal caregivers, most current models of IPC fall short because their integration is limited to formal health services and consumers are involved as clients to be consulted rather than partners in the co-design of services. Effective integration must include the multiple systems that provide care for a dying person, their family

and immediate social network. This raises some largely unexplored questions about the reciprocal contributions of formal and informal care providers, including the mutual recognition of those contributions through role sharing and referral. Formal service providers, while expressing goodwill toward informal networks, do little to establish, support or maintain them.

Public health approaches to end-of-life care have the potential to enhance the integration of services and provide a comprehensive approach that engages the assets of local communities. They also offer frameworks in which partnerships can be developed with communities that have distinctive end-of-life needs, and thus provide a more inclusive approach to end-of-life care. However, it needs to be noted that quite complex governance issues can be involved in collaborations between formal services and informal networks of care. These issues need to be identified and explored in depth so that risks can be mitigated, and the potential of such collaborations be realised. Clearly such approaches resonate with that of community-controlled health organisations that lead indigenous healthcare in Australia [126]. This is of particular relevance to Western Australia, but considerable further work is needed to develop community-controlled partnerships in end-of-life care [127].

### **6. Limitations**

As indicated in the methodology section, this rapid review was intended to identify national or international consensus on patient preferences for settings in which to receive palliative care and the appropriateness of different models of palliative care in order to inform end-of-life care policy and service development for the Western Australian Department of Health. Consensus is based on systematic reviews available in English. These findings were supplemented by studies selected to provide further insights into experiences of care or the process of providing care not available in the evidence provided by systematic reviews. The studies were selected for their relevance to gaps in knowledge. There was no formal attempt to assess quality or risk of bias in the studies found through these supplementary searches, but only reasonably robust studies were included in the review, and a note included in several instances where sample size or specific location could be an issue.

In this article, we have not given specific attention to studies in a rural setting or involving indigenous perspectives, both of which have particular relevance to Western Australian policy priorities. Nor have we included studies of under-served populations that are of particular interest in public health approaches. The lack of access to palliative care by Aboriginal and Torres Strait Islanders, rural and regional people, CALD communities, 'condition-specific' groups such as dementia or mental illness, and 'marginalised groups' such as homeless, refugees, members of the LGBTIQ+ community, has been acknowledged in many WA Health documents across the years. While these population groups have been the subject of a more recent tailored national review into their needs [128], further efforts are needed to document and incorporate consumer feedback from these groups in prospective frameworks on end-of-life care.

We are aware that we have undertaken substantial interpretation in our thematic organisation of the studies included here but given the breadth of the question and the need to cover consumer characteristics, experiences and existing service model studies, we believe this to be justified.

### **7. Conclusions**

Evidence gathered through the review points toward a consensus that an optimal end-of-life care system will integrate formal services and informal networks of care along the illness pathway. The stumbling block for such integration continues to be the gulf established by contemporary policy and funding constraints that distinguish between professional and informal care—the former regulated, the latter recognised for the most part only when under professional surveillance. Several localised models that bridge this gulf by creating conditions under which active collaboration can flourish have been

developed but are not easily scaled-up under current forms of healthcare governance. The key common element appears to be enabling local communities to negotiate with and adapt service delivery programs that have been established at a national or regional level. That is, good models of care take account of consumer experience not by incorporating generalised evidence but by co-creating services with local communities. While it is important to gather feedback on the consumer experience of end-of-life services through continuous quality assessment, we should put an end to approaches that study consumer experience in order that professionals can design organisational responses. Consumer experience should be incorporated in policy and service design through co-design that enhances the social network supporting dying people and their carers and puts this at the centre of a comprehensive, integrated care model.

**Author Contributions:** The two authors have made substantial contributions to the conception and design of the work; the acquisition, analysis, or interpretation of data; have drafted the work or substantively revised it; have approved the submitted version; and agree to be personally accountable for their own contributions and for ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated, resolved and documented in the literature. All authors have read and agreed to the published version of the manuscript.

**Funding:** This review was funded by the End-of-life and Palliative Care Program, Department of Health Western Australia.

**Institutional Review Board Statement:** The study was conducted according to the guidelines of the Declaration of Helsinki, and approved by La Trobe University research ethics committee, approval number HEC20232.

**Acknowledgments:** This review was funded by the End-of-life and Palliative Care Program, Department of Health Western Australia. Thanks to Robyn Richmond for assistance in formatting the references.

**Conflicts of Interest:** The authors declare no conflict of interest.

### **References**


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