Public responses to visual exhibitions portraying dying and death

Several high-profile UK exhibitions have explored dying, death and grief in the last 20 years, leading to a broad spectrum of public responses. ‘Death: A Self-Portrait’ (2012), for example, showcased the personal collection of art collector Richard Harris, who had acquired over 2000 death and mortality-related objects. The exhibition featured artworks, artefacts, photographs and books that explored themes of anatomy, violence, commemoration and ritual (Yaqub 2012). Critically acclaimed for its diversity, richness and relevance, the exhibition garnered positive reviews and attracted over 100 000 visitors, becoming one of the most popular displays at the Wellcome Collection in London (Prigg 2012). In 2008, the ‘Life before Death’ exhibition (Schels and Lakotta 2021), also hosted at the Wellcome Collection, featured portraits taken by German photographer Walter Schels, depicting 24 people weeks before and in the hours after they had died. Schel’s partner, Beate Lakotta, also recorded interviews with the subjects in their final days. The exhibition curator James Peto explained that the exhibition elicited a strong emotional reaction in many of the 50 000 members of the public who visited (Jeffries 2008).

Most controversially, ‘Body Worlds’ (Body Worlds 2024) is a series of travelling exhibitions that display real human bodies preserved through a process known as ‘plastination’. Body Worlds opened to record crowds on 22 February 2008 at the Museum of Science and Industry in Manchester, and The O2 in London in October 2008. Ethical, legal and religious concerns have surrounded the exhibitions since the conception of the project in 1995. Criticisms include accusations of sensationalism and voyeurism (Stone 2011), while some praise them for being informative and empowering. The exhibitions are purported to have drawn more than 50 million visitors globally, making it one of the most visited in the world (Bresnahan and Austriaco 2022). Similarly ‘Real Bodies’ (Real Bodies 2024) is a display of preserved human bodies and anatomical specimens, which opened at the National Exhibition Centre in Birmingham on 8 June 2018. The exhibition aims to elicit an emotional connection and deeper understanding of life and death through immersive moving gallery displays. Concerns have been raised regarding the origin of the bodies on display in this exhibition, and whether informed consent was obtained from those who donated their bodies.

The Body Worlds (Goulding, Saren, and Lindridge 2013) and Real Bodies (Murphy 2018) exhibitions, while popular and provocative, have been criticised for their potentially dehumanising portrayal of death, focusing mainly on anatomy and science (Stone 2011). These displays, featuring skeletons and plastinated bodies, lack the context of actual dying experiences. This represents a significant gap, as visual works that intimately depict the dying process are rare (Andrec, Brookman, and Livingston 1996) (Jury and Jury 1978). Among these limited representations, the British Museum’s permanent exhibition ‘Living and Dying’ (2023) explores global cultural approaches to health and death. Its focal piece, ‘Cradle to Grave’, uses prescribed drugs woven into fabric to represent two individuals’ medical journeys. Dyer (2005) argues that the exhibitions’ contextualising text and photographs help viewers understand and reflect on the human experiences of pain and hardship.

‘The Final Project’ (2016) exhibited the late British photographer Jo Spence’s work, documenting her life and illness before her death from leukaemia. Spence, a working-class woman, used photography to confront her cancer experience, depicting the disease’s impact and employing toy skulls for modern memento mori. Her work was praised for challenging the perception of dying as solely a medical issue rather than a social and personal experience (Kenny 2015), which was helped by her inclusion of personal narratives which enhanced its emotional impact on visitors (Judah 2016). Additionally, The Bristol Museum & Art Gallery’s exhibition ‘Death: Is it your right to choose?’ explored assisted dying. It featured a replica of the Dignitas flat in Zurich, surrounded by varied opinions and personal testimonies on the subject. Graves (2016) notes its success, with over 62 000 visitors in 19 weeks and significant social media engagement, through the #isawdeath hashtag. Once again, the exhibition was commended for its use of personal narratives to foster dialogue on a key debate in end of life care.

One striking aspect of these exhibitions is the distinction between portraying death and portraying the process of dying, which is often protracted in the twenty-first century as most people die of multiple chronic conditions with death delayed through various biomedical interventions. Exhibitions that cover the topic of dying tend to be smaller and less well publicised than those related to death. This may be due to a lack of understanding or reluctance to define what ‘dying’ means. This hesitancy to define ‘dying’ might stem from the stark contrast between the certainty of what constitutes ‘dead’ and the ‘non-scheduled status passage’ which constitutes dying (Glaser and Strauss 1965). The trajectory of certain conditions, such as chronic obstructive pulmonary disease (Pinnock et al 2011), is difficult to predict, complicating any attempts to delineate when exactly ‘dying’ begins. Is it marked by the commencement of hospice involvement, or does it start when one is actively dying, generally considered to be within 3 weeks or less of death (Hui et al 2014)? The lack of a cultural consensus on this matter reflects our collective unease with identifying and naming dying, which remains nebulous, unlike the finality of death itself.

This differentiation can be re-examined through Kellehear’s (2022) taxonomy of dying, which provides a more granular understanding of the dying process across different contexts. Exhibitions such as Body Worlds and Real Bodies, which display preserved bodies and medical histories, can be seen as illustrations of embodiment-led dying. In contrast, exhibitions such as The Final Project and Death: Your Right to Choose, which emphasise personal narratives and lived experiences, resonate with Kellehear’s (2022) criticism-led dying. These exhibitions use the act of dying to critique societal norms, offering a platform to explore how individual identities and social circumstances shape experiences of dying.

The Cost of Dying exhibition was designed to prioritise the individual narratives of people with lived experience of financial hardship at the end of life. Although exhibitions based on personal accounts and social identity have been generally positively received (Graves 2016), we wanted to discover how an exhibition specifically contemplating subjective experiences of poverty at the end of life would be viewed by the public, particularly at a time when the contemporary UK media was saturated by coverage of a cost of living crisis and challenging global economic conditions.

Curation of the Cost of Dying exhibition

The purpose of this section is to detail the thought processes, discussions and practical considerations that we navigated when designing our exhibition ‘The Cost of Dying’. The audiences we were targeting included: the general public; healthcare and social care professionals (including palliative care professionals); and decision makers (both clinical and political). The first question to address was how to represent our visual data, the professional portraits, and our findings from the study in a way which initiated public debate and avoided didacticism and losing audience attention due to compassion fatigue.

In the study itself, we used a participatory research design to enhance participant involvement in the research process (Richards et al 2023). However, we knew from the outset that the curatorial decisions could not involve participants or their carers. This was because many participants had died, and those who were still alive were very sick. Bereaved carers or current carers had been involved intermittently or for discrete periods of time during the study but had made clear the limits on the time they could commit. Many carers were themselves struggling financially in addition to dealing with their grief. Aside from feasibility, there was also the question of creating a shared vision and a clear ‘take home’ message for exhibition visitors. Learning from previous research (Richards, Warren, and Gott 2012) indicated that without this shared vision, the impact would likely be lost; in seeking to serve everyone’s interests we would run the risk of serving nobody’s.

During the study, a variety of different images were created by both Margaret Mitchell and by participants. There were around 5–15 exhibitable images of each of the participants taken by the photographer. Additionally, Margaret Mitchell took 1–10 documentary images per participant. Participants also took their photovoice images; the number varied widely by the participant, with some individuals taking no photographs while others took up to 150 photovoice images. Finally, three digital stories were created by bereaved carers.

The research team held several video calls about how these different types of images, as well as the digital stories, would be presented alongside one another within the same venue space. How images are juxtaposed changes their meaning (Metcalfe 2015), and there were particular sensitivities around juxtaposing images taken by participants to represent their subjective ‘insider’ perspective and the professional portraits taken with an artistic ‘outsider’ sensibility (Richards et al 2023). There were also deliberations about how much sociological context to give on the general topic of the structural determinants of dying, biographical and clinical details about each participant, and how much to let the images do the heavy lifting and allow for audience interpretation; in other words, how much didacticism to introduce.

Three different venues were selected to appeal to our different target audiences. The venues, audiences and sources of feedback we solicited at each venue are presented in table 1:

Through a series of video calls, the whole research team, including the photographer, met to discuss the selection of professional images to show at the different exhibitions. Margaret Mitchell’s image selection was respected in most cases based on her professional view about which were the visually strongest images. There were a couple of images where there was a difference of opinion in terms of the researcher’s view of what were better or lesser known visual tropes of dying in end of life policy and artistic discourse. This involved tense discussions with each team member’s rationale being articulated, considered, and a compromise eventually forged.

A third ‘voice’ was brought into the mix by hiring an exhibition producer. Oona Dooley was brought onto the team to help with designing the text panels so that they were of professional quality and to ensure that language and typeface were accessible. She also had considerable experience working with visual artists, accommodating their vision, and balancing a range of media into a cohesive exhibit. This strategy is to be recommended for other research teams designing exhibitions, as it is important to draw on those with dedicated expertise and knowhow to produce something which is ‘read’ by audiences, whether consciously or not, as a ‘professional’ exhibition and therefore deserving of their considered attention and dedicated time.

An early key decision to be made was whether or not to present our participants’ stories individually or to present findings thematically. While on the one hand, we recognised that the first presentational style would better reflect the subjectivities and nuances of each participant’s story, on the other, we were concerned that the larger structural cross-cutting issues arising across the sample might be less perceptible to an audience. Our traditional academic outputs (journal articles, conference presentations) presented the study findings thematically, seeking to give a general account rather than to evoke people’s individual stories in the round (Richards et al 2024). However, for the exhibition, our main aim was to evoke emotional identification from visitors using the specificities of the participants’ lives. In the end, we designed two exhibitions—one thematic (with some hint of the personal stories involved) for our mainly clinical audience, and one entirely individually focused exhibition for our general public audience (including politicians).

The individually focused public exhibition was organised in a series of eight half-hexagon four-sided ‘nooks’ using large, high-quality display boards (bought in at considerable cost by the university). This orientation was originally proposed by Margaret Mitchell at an early recce of the space. An example of the ‘nooks’ and how they functioned to create more private, intimate space within a vast open area of a modern university building can be seen in figure 1. We felt the half hexagon ‘nook’ formation would also restrict the number of visitors who could be immersed in each individual’s story at any one time, again, creating intimacy and enhancing imaginative identification with the stories (figure 1).

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Figure 1

Half-hexagon ‘nooks’ under construction using large white display boards to create a temporary, more enclosed and thus more private space to view images in the Advanced Research Centre. Copyright Dying in the Margins, 2023 all rights reserved.

The thematically structured exhibition for a predominantly clinical audience of palliative care researchers and practitioners was more circumscribed in terms of the scope available to create a professional aesthetic. The exhibition venue was a traditional corporate conference space and we had to use conference poster boards (supplied by the venue) to display the images. Portrait images with small text captions were displayed on one side (figure 2) while the thematic text panels, including additional documentary, photovoice images and participant quotes, were displayed on the other side (arranged by our exhibition producer). In sum, while we needed to target a clinical audience for the images and study findings, the set and setting were more corporate and had a less traditional art exhibition aesthetic than the individually structured exhibition, and emotional identification with the images and stories was potentially reduced (see figure 2).

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Figure 2

Portrait images exhibited at the conference. Copyright Dying in the Margins, 2023 all rights reserved. Pictured portraits: Copyright Margaret Mitchell, 2023 all rights reserved.

In the Mitchell Library exhibition space, we needed to reuse the already printed materials and adapt the format for the space. While this exhibition remained individually structured, the ability to come up with a bespoke design for a very open space which acted as a thoroughfare in its location near a main door, meant that the intimate feel of the earlier exhibition was lost. The venue was chosen to target a specifically public audience, and as one of the largest libraries in Europe with an estimated 400 000 visitors per year, we anticipated significant footfall over the exhibition’s 2-month-long duration. The main addition made to this version of the exhibition was the introduction of more participant photovoice images, arranged in glass display cases by the exhibition producer (see figure 3).

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Figure 3

The library display featuring glass cabinets with photovoice images. Copyright Dying in the Margins, 2023 all rights reserved.

Evaluation of the exhibition

In setting out to evaluate the Cost of Dying exhibition, we were guided by an overarching research question: What are the responses of different audiences to a photographic exhibition depicting experiences of financial hardship and deprivation at the end of life?

Aesthetic experiences are hugely subjective and exhibition visitors’ experiences are shaped not just by visual elements but also by a broad spectrum of experiential factors (Vissers and Wagemans 2023). The ‘How To: Evaluate an Exhibition’ framework from Cambridge Museums (Noble 2018) provides a foundational approach for assessing the impact of visual exhibitions accounting for these experiential factors, highlighting methods such as surveys, interviews, observations and ethnographic notes. Reflecting this methodological diversity, various evaluation studies have adopted different approaches. Merrett and Eveleigh (1985), for example, administered quantitative surveys to visitors before and after they viewed the ‘Why Worry?’ exhibition to evaluate the exhibition’s impact on anxiety awareness. Ballarini, Mougenot and Prokupek (2019) employed semistructured spot interviews to evaluate the ‘DeTermination’exhibition, and (Lakhanpaul et al 2021) took a mixed-methods approach to evaluating the ‘Birthing a Better Future’ exhibition. Given the diverse methodologies highlighted in the literature, it is clear there is no ‘gold standard’ or universally accepted best practice for exhibition evaluation. Instead, the choice of method often depends on what is feasible and most appropriate for the specific context and objectives of the exhibition being assessed.

The evaluation of the Cost of Dying exhibition consisted of an anonymous feedback box, two cross-sector panel discussions and comments posted on social media. Anonymous feedback forms are a well-established method in the evaluation of art gallery and museum exhibitions (Felten and Kahn 2021) as they provide an efficient way of collecting a large amount of qualitative feedback (Noble 2018). However, it is important to acknowledge that this method produces a self-selective sample, and visitors may be more likely to post comments if they feel strongly about the issues covered (Elston 2021).

Second, two cross-sector panel discussions were hosted: one at the University exhibition (n=49 attendees), and the second at the community exhibition (n=35 attendees). Four panel members participated at each event and discussed their responses to the images and how services could be improved for people experiencing financial hardship at the end of life. Panellists included bereaved family/carers, palliative care practitioners, social sector professionals and policy experts. Both events were open to a public audience and all attendees were made aware that the event was being audio recorded for later analysis.

Finally, we scanned online media coverage (BBC News website) and social media (Facebook, Instagram and Twitter) for responses to the coverage of the exhibition. These comments were tabulated in Microsoft Excel and included in the final analysis. Data were collected and analysed from the sources presented in table 1.

Over 200 pieces of feedback were received across the three exhibitions. In some cases, it was possible to recognise the job designation of the commenter. Additionally, some individuals self-disclosed their occupation or mentioned that they were a family member of a participant. The data from the exhibition evaluation were analysed using thematic analysis as per Clarke and Braun’s (2013) methodology, a process focused on identifying, analysing and interpreting patterns within qualitative data. Initially, the researcher, SQ, familiarised themself with the feedback. They then generated initial codes by methodically identifying notable aspects of the data. These codes were organised into potential themes, which were reviewed by NR and refined to ensure they accurately represented the exhibition evaluation feedback. Quotations are included to exemplify the identified themes.

Reception of the images

The analysis produced the following four key themes: the emotional impact of the exhibition; challenging stereotypes and education; call to action; and desire for change. Less prevalent themes were how the exhibition affirmed the experiences of professionals and family carers and practical considerations.

Emotional impact of the exhibition

The emotional impact of the exhibition was very prominent in the feedback received, although the nature of the emotion differed widely. Those who identified themselves as family members reported a strong sense of pride in their relative’s involvement (see figure 4), a feeling that their relative had been selfless in sharing their experiences and that the images constituted part of their legacy:

That sense of pride that they, at a time when they were facing a huge amount of other challenges, death being one of them, because they knew that it was coming, that they would consider a legacy, of leaving a legacy and that legacy being that there are issues that need to be addressed. That [my niece], you know, wasn’t considering what people would think about her when her story was being told, but what her story would mean for us and helping to prevent others going through the same thing. (Family member at panel discussion)

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Figure 4

A participant’s mother views a picture of her daughter. Permission to use the image was sought and provided by the University of Glasgow Photography Unit and the individual pictured. Pictured portrait: Margaret Mitchell, 2022 all rights reserved.

The panel member’s mention of her niece, who ‘wasn't considering what people would think about her’, alludes to the stigma surrounding financial hardship. Throughout the study, we grappled extensively with questions around which images to make public due to concerns about contributing to stereotypes of poverty and of the potentially shaming effect for those we have worked with. In a cultural context where even the term ‘poverty’ has become highly politicised and certainly disowned as a social identity (Hudson 2015), showing images of the lives of people affected by poverty and deprivation is also a highly politicised undertaking.

For one, there is wide scope for misinterpretation by audiences, including those reading this article, and a potential closing down rather than an opening up of viewers’ empathy. Our confidence in releasing these images comes down to three guiding ethical principles. The first is that our participants wanted their stories to be told to improve care for people dying in the future. While levels of engagement and commitment varied, all were aware from the very first conversation that the images were destined for a public audience with the intention to capture the imagination of decision-makers and effect real-world change. The second principle is that we strive to be balanced in what we make public in order not to be reductive about participants’ lives and reduce them to single issues. The final principle which guides us is the idea that by not showing some of the more challenging or stereotypical images we are potentially colluding with ideological forces which deny the existence of poverty or blame individuals for their circumstances, as well as potentially undermining the autonomy of our participants who took the images with the intention of showing them.

Some members of the public also found the images profoundly emotional, with sadness being prominently expressed:

i am so sad that the country that i love has such inequality - from birth to death. (advanced research centre feedback)

However, in some cases, initial feelings of sadness gave way to anger that, in a comparatively wealthy country, people were dying in poor financial and material circumstances:

I hesitated to visit this exhibition as I felt it might just be too depressing. But it was not. The dignity and beauty in Margaret Mitchell’s portraits mitigated against the sadness. I am, however, leaving the exhibition angry that in a wealthy country such as ours, people are not being given the opportunity to die with dignity in their own homes. (Advanced Research Centre feedback)

There was also a strong undercurrent of appreciation and empathy for the individuals who shared their experiences of financial hardship at the end of life:

Thank you to the brave people who allowed themselves to be included, sharing their experiences. (Library feedback)

There were also mentions of hope and optimism that things will improve:

A very powerful and moving exhibition. Just hope and pray that more will be done for these courageous people as a result. (Library feedback)

We had previously questioned if the intense media focus on the cost-of-living crisis and the negative economic outlook might lead to compassion fatigue, potentially reducing public interest in the exhibition. However, our data analysis and the feedback received suggest otherwise. Many attendees reported that their visit was prompted by the BBC’s coverage of the exhibition (Keenan-Bryce 2023). This indicates that, despite the challenging economic climate, the media exposure helped maintain public engagement rather than contributing to compassion fatigue. It’s important to note, however, that the feedback mainly came from self-selected individuals already interested in the exhibition.

Saw this on the news, very moving. A time when money worries shouldn't come first but do. Thank you to all those that took part. (Social Media feedback)

A bit morbid and macabre but it’s a part of life I suppose. (Social Media feedback)

To gain a broader perspective, we also included social media comments from Facebook, Instagram and Twitter in our thematic analysis. Although a small minority found the subject matter too upsetting or morbid, the majority of comments on social media underscored the exhibition’s emotional impact, often highlighting how it deeply resonated with visitors.