Tourism and final wish making: the discourse of terminal illness and travel

ABSTRACT

This paper identifies a new discourse about tourism, that of final wish making. The website communications of charitable foundations whose dedicated purpose is to grant final wishes for adults with a terminal illness and their families were examined using critical discourse analysis. Specifically, the aim of this study was to understand how these charitable organisations construct, communicate and mediate meanings around terminal illness and travel for these individuals. Our study found that, promoted as a final wish in one’s life, tourism is framed as a transformational concept that is beneficial in the imminent time before death, as a legacy for life, and after death. Our analysis indicated implications around the memory-making potential of tourism and the differential power relations between final wish organisers and vulnerable individuals with a terminal illness. The paper calls for further research exploring the marginalisation of the terminally ill through tourism, but equally the potential of tourism to include the most vulnerable tourists in their final days.

KEYWORDS:

• Tourism for all
• terminal illness
• memory-making
• critical discourse analysis
• charity
• marginalisation

Introduction

Understanding terminal illness in the context of tourism could be considered integral to exploring how tourism can be accessed by all (Hunter-Jones et al., 2020). There is no universally accepted definition of terminal illness, although it is generally accepted that a terminal illness is incurable and, based on the limitations of today’s medical technologies, will culminate in death (Beeuwkes Buntin et al., 2004). Whilst previous work considers the transformational benefits of tourism for those who are marginalised, individuals with a terminal illness may not always be marginalised by economic, social, or access needs. A diagnosis of a terminal illness can however alter the circumstances of an individual and change whether they can still travel independently or not. Importantly, the motivation for an individual with a terminal illness to travel may be prompted by a distinct purpose – a desire to connect with their loved ones, create memories together, and achieve their dreams, before they die. Indeed, dedicated charities facilitate travel opportunities for individuals with a terminal illness. A deeper understanding of how tourism is constructed and promoted for those with terminal illness and in the last months of their life, and their families, remains relatively absent in tourism research. Scholars have increasingly sought to understand the wider meanings and implications of tourism representations (e.g. Wilson et al., 2008; Wilson et al., 2009), yet silences remain around how organisations that seek to grant final wishes for those who are terminally ill construct, communicate and mediate discourse around tourism in the context of terminal illness.

Final wishes, in the context of this paper, are the experiences that adults with terminal illness and their families apply to an organiser to fulfil before the death of the terminally ill adult. Final wish organisers are small charitable foundations that exist exclusively to grant final wishes for individuals with a terminal illness who are successful in their application for a final wish, and that may collaborate with the tourism industry if the final wish requested involves travel. This paper focuses specifically on the charitable foundations that grant wishes for adults, rather than children, with a terminal illness because this area of tourism scholarship remains particularly silent. Indeed, one charitable foundation in our study, Dream Foundation, was established because the founder discovered that while dream-granting agencies existed for children, no such place existed to honour adults’ final wishes. As niche providers, catering to small numbers of wish recipients, these charitable foundations operate criteria for assessing final wish applications, have limited capacity for granting wishes, and the nature of any tourism experiences they may facilitate are qualitatively distinct from mainstream tourism providers and other charities. Specifically, the way that final travel wishes are constructed, communicated and mediated by these charitable foundations are unique given the context of terminal illness and end-of-life. This paper thus provides original insights into the discourse of tourism as a final wish. An important implication is that tourism experiences, granted as a final wish, may be metaphorical for redefining the last days of a person’s life as one centred on personal meaning and connection, rather than grief. Equally, the communicated meaning of travel granted as a final wish may also reveal wider power issues and implications that perpetuate tourism as a marginalising activity.

Literature review

Previous research has discussed the relationship between death and tourism through the lens of enhancing quality of life via wellness tourism (for example, Wang et al., 2020), travel for voluntary assisted suicide (Wen et al., 2019) or death tourism (Biran et al., 2013). Scholars have alluded to the fact that tourists with a terminal illness are, at times, stigmatised, and excluded from tourism experiences because they do not fit in the ‘normal’ youthful, fit images associated with tourism constructed by society (Luo, 2016; Wang et al., 2020; Wen et al., 2019). Yet, diagnosis of a terminal illness may create a desire to build collective memories through travel by completing ‘bucket list’ (Thurnell-Read, 2017), or ‘before I die’ dreams (Tickle & von Essen, 2020). There is evidence that individuals at their end of life will often express a desire to travel (Aisporna & Erickson-Hurt, 2019), particularly to places that are meaningful, such as a birthplace (Johnson et al., 2007). Zascerinksa, Sharpley and Wright (2022) note that there is a paucity of academic attention focused on the significance of the bucket list and of travel and tourism goals within this list. Travel during terminal illness and the role of the bucket list during this time thus requires greater consideration. For some individuals, terminal illness may develop over time, while for others, the onset can be so sudden that it is not feasible to develop a list of final desires. There is thus no one response to terminal illness, and whilst not all will seek to travel before they die, our study is positioned around the communication to those who might consider travel at this time. Whilst families may support their loved ones to achieve final travel desires, the aim of this study is to understand how dedicated charitable organisations construct, communicate and mediate meanings around terminal illness and a final wish to travel for these individuals to address a gap in knowledge around this issue.

Diagnosis of a terminal illness leads to a period of significant stress, upheaval, and vulnerability for both the individual diagnosed, their family and loved ones (Gawande, 2014). During this end-of-life period, prior research has evidenced that individuals are likely to experience spiritual upheaval and will seek quality time with supporting and willing caregivers; they may also be concerned about a perceived burden on their loved ones (Hunter-Jones et al., 2020; Johnson et al., 2007). Charities often play an important role in assisting individuals to manage their confusion, fear, anxiety and loss around terminal illness (Fearnley, 2015), and may facilitate travel for individuals with a terminal illness. For example, the provision of weekend getaways or camps, particularly for children who are experiencing a terminal illness diagnosis in their family, are seen to assist with the grieving process (Walter, 1999), and may lead to better psychological outcomes (Fearnley, 2015). Charities can also assist with the extra levels of financial and emotional support that families, carers and individuals with a terminal illness require to cope with their situations (Harris, 2017). Final wishes are becoming increasingly prominent as society and family relationships have continued to fragment, as death has moved out of the family home away from community connections, and into organised institutional spaces (Hay, 2015). Previous end-of life and nursing literature has noted that health professionals and organisations increasingly play a leading role in decision-making and end-of-life-care, especially as conversations around death and what constitutes a ‘good death’ have also continued to decline (Corr et al., 2018). Research has also highlighted that clear, collaborative communications that appreciate the different interrelated factors are needed to reduce feelings of being overwhelmed and disempowered (Corr et al., 2018).

There remains a gap in our knowledge about how charitable organisations act as a source of constructing, communicating and mediating discourses on terminal illness (Qian et al., 2018; Wodak, 1997). It is therefore important to question these organisations’ positions, espoused values and how they ‘seek to influence public opinion and ultimately hegemonic power and truth’ around the subjects of terminal illness, death and tourism (Motion & Weaver, 2005, p. 54). These questions are particularly important for the study of terminal illness and final wish organisers as there are likely to be differences in power and perspectives between individuals with a terminal illness and organisers granting final wishes. For example, individuals diagnosed with a terminal illness are likely to be experiencing significant stress and personal upheaval; they are particularly vulnerable, and it is up to the discretion of the final wish organiser to determine who receives a wish and who does not. There may also be a significant tension as to how organisers present themselves – the language they use and the images they choose to create ex/inclusion. An added tension is how they balance communicating with an individual with a terminal illness, their family or carers, while at the same time managing their reputation, calling for donations and promoting the success of their wish granting to the wider public. Indeed, previous tourism scholarship attests that multiple audiences exist for tourism representations and these representations are rarely neutral (Wilson et al., 2008; Small, 2017).

Communications around terminal illness are distressing and difficult (Gawande, 2014). Individuals with a terminal illness, their families, support services, and medical professionals may seek to avoid open communication, or tell mistruths about the diagnosis and prognosis of the illness to diminish psychological distress (Bachner et al., 2021). This presents a tension, as the avoidance of open communication around terminal illness may increase depression, mental exhaustion, and heighten grief (Bachner et al., 2021). Previous tourism research has suggested that certain highly personal conversations around final wishes before death go unspoken. Indeed, we know that some people with a terminal illness who want to travel have requests that go unfulfilled (Aisporna & Erickson-Hurt, 2019; Hunter-Jones et al., 2020). For some, it may be because goals-of-care conversations often do not include travel desires, and an individual with a terminal illness is at a greater risk of depression, withdrawal, denial and feelings of helplessness (Aisporna & Erickson-Hurt, 2019). Within the wider context, death has had changing discursive meanings over different cultural, historical and institutional contexts. A key feature of modern conceptions of ‘a good death’ is about an individual’s right ‘to make their own decisions about what remains of their lives’, autonomy and dignity (Carpentier & Van Brussel, 2012, p. 109). Yet, individuals with terminal illness may have decision-making autonomy reduced or taken away from them by loved ones or medical professionals. This can then lead to feelings of dis-empowerment (Grant et al., 2004). All corners of an individual’s life are impacted by an encounter with illness and ultimately death (Willson et al., 2018), yet rarely have we considered this in tourism research.

Method

Adopting critical discourse analysis (CDA), this study sought to understand how charitable organisations construct, communicate and mediate meanings around a final wish to travel for adults with a terminal illness. CDA views text in communication as a form of social practice and meaning making (Janks, 1997). CDA pays particular attention to the relationship between communication and power, to examine how these frame issues in ‘ways in which knowledge, subjects, and power are produced, reproduced, and transformed within discourse’ (Leitch & Palmer, 2010, p. 1195). It also pays attention to what communication is silent on, or ‘the ‘secret’ meanings that are not obvious’ (Hannam & Knox, 2005, p. 23). Researchers applying CDA are asked to consider, for example, ‘How is the text positioned? Whose interests are served by this positioning? Whose interests are negated? What are the consequences of this positioning’? (Janks, 1997, p. 329). Whilst conducting CDA is not a prescribed step-by-step method, it does espouse a similar theoretical approach to analysing text within the wider social context of sociocultural practice (Meyer, 2001). Following previous tourism research that has sought a critical investigation of communications shaped by tourism discourses (e.g. Small, 2017; Small & Harris, 2012, 2014; Wilson et al., 2008, 2009), CDA was an appropriate framework for this analysis.

Websites of charitable foundations promoting final wishes were selected as the form of communication to analyse for three main reasons. Firstly, final wish organisers’ websites present the only means for communicating detailed application information for a final wish. Secondly, websites are a stable, widely recognised, trusted form of communication that are the considered, crafted expression of an organisation’s espoused values (Taddeo & Barnes, 2016). Thirdly, websites offer rich visual and textual data as a unit for analysis which some other methods, such as interviews, may not deliver. A limitation of website analysis is that websites change, and this makes it difficult to keep research replicable (Mautner, 2005). To minimise this, sections of each final wish organiser’s web pages were snipped and saved throughout the period of data analysis. Only web pages in English were examined.

This study applied Fairclough’s (1992) three-dimensional model of CDA to guide our analysis. Fairclough’s three dimensions are: (1) analysis of the text, (2) discursive practice and (3) socio-cultural practice. The authors focused their analysis, and presentation of findings, on these three dimensions. Firstly, the authors examined each final wish organiser’s website in relation to its written text and pictorial content. The website home page and secondary pages were analysed to present a more complete and therefore credible insight into the content present within each website. Each website had at least five secondary tabs comprising of, for example, contact details, and information for potential donors and volunteers. A total of 349 webpages across the seven final wish organisers’ websites were analysed for common content using NVIVO software to manage the large data set and enhance the rigour of analysis of text and images (Hilal & Alabri, 2013). The messages relating to the final wish were then examined in terms of discursive practice. The authors shared and discussed their findings to collaboratively form interpretations and build layers of insight into the socially constructed meanings behind the wealth of textual and visual themes. In the third phase, this interpretation framed discussion anchored in a wider socio-cultural practice about the dominant practices and discourses at play in the website communications and the ideologies supporting them. As such, the analysis extended to the wider context around the website content, including issues of power, interests and motivations behind the promoting and granting of final wishes for adults who are terminally ill.

To identify final wish organisers that grant final wishes specifically for adults with a terminal illness, a search was conducted between February and March 2022 using different browsers (Explorer, Chrome and Firefox). Multiple browsers were used as web browsers do not always render websites the same way (Scacca, 2020). The search was conducted via the Google Search tool using multiple descriptive key words. The concept of ‘terminal illness’ is often used interchangeably with ‘life-threatening illness’ and a myriad of other terms (Hui et al., 2014). As such, the following list of search terms was used and combined with ‘travel’ or ‘tourism’: ‘terminal’, ‘terminally’, ‘palliative’, ‘charity’, ‘foundation’, ‘advanced illness’, ‘last-chance’, ‘bucket list’, ‘final’, ‘end of life’, ‘last wish’, ‘final wish’, ‘hospice’, ‘life-threatening’, and ‘critical’. Our search identified a list of over 50 organisations that appeared to grant wishes for individuals with an acute illness. Of these organisations, 28 were shortlisted as they initially appeared to meet the study’s criteria.

Only organisations that granted final wishes specifically for adult individuals with a terminal illness were considered for analysis. Our focus was on terminal, rather than life-threatening illness, because terminal illness has a defining prognosis; that is, that the illness will result in death; conversely, a life-threatening illness may not result in death. Thus, charitable organisations focusing on terminal illness are at the forefront of shaping the discourse around final wishes within the last months of life. Furthermore, our study was limited to adults with a terminal illness because one may assume they are able to apply for and travel independently. As such, organisers that catered for individuals with an ongoing chronic or life-threatening illness, and those specifically for children, were considered outside the scope of this study. Hospice based organisations were also excluded as they generally did not grant final wishes; rather, they were focused primarily on care within an individual’s final period of life. Traditional ‘wish-granting’ organisers such as Make a Wish Foundation were also not considered as recipients of the wish are not those solely diagnosed with a terminal illness. Our sample was further limited to those organisers that had websites that were publicly available and communicate in the English language (see Table 1).

Table 1. The final wish organisers that met the inclusion criteria of the study.

Final wish organiser	Website	Facilitates tourism as a final wish	Eligibility*	Website availability	Country	Slogan	Background
Dream Foundation	www.dreamfoundation.org	Yes	Adults with terminal illness	Publicly available in English language	USA	‘Giving life to final dreams’.	No such dream granting agency existed for adults. Establishment inspired by late partner.
Bucket List Wishes	www.bucketlistwishes.org.uk	Yes	Adults with terminal illness
	Publicly available in English language	UK	‘Grant a wish. Make a memory’.	Established to honour the founder’s mother who created a bucket list on being diagnosed with a terminal illness.
Bucket List Foundation	https://www.bucketlistfoundation.org/	Yes	Seniors with terminal illness	Publicly available in English language	USA	‘Granting wishes to terminally ill seniors’.	Aims to grant wishes to terminally ill senior citizens to inspire hope and quality of life for a generation that has given so much to ours.
Dreamweaver Foundation	https://dreamweaver.org/	Yes	Seniors with terminal illness	Publicly available in English language	USA	‘It’s never too late to dream’. ‘Realizing dreams. Connecting hope’.	Dreamweaver Foundation is dedicated to fulfilling the dreams of seniors who are terminally ill, making their life-long dreams come true through incredible experiences they will never forget.
The Bucket List Project Foundation	https://www.thebucketlistproject.com/	Yes	Adults 18+with terminal illness	Publicly available in English language	USA	No slogan visible.	Inspired by first Bucket List Project wish recipient, Kenny Kozikowski. Their goal is ‘to bring joy by providing a memorable experience’. Their mission is to continue the legacy of compassion and to never have to deny an end-of-life wish request.
Dreams2Live4	https://dreams2live4.org.au/	Yes	Adults living with metastatic cancer	Publicly available in English language	Australia	‘A dream granted every 48 h’.	Founded by metastatic cancer patient, Annie Robinson, who understood the need to ‘treat the soul as well as the disease’.
Race4Life	https://race4life.org.nz/	Yes	Adults 18 + who are palliative care patients	Publicly available in English language	New Zealand	‘Fulfilling wishes of palliative care patients’.	First established in 2015; this is the only Trust in New Zealand that has the specific brief of fulfilling the wishes of palliative care patients 18 + .

*Eligibility based on a terminal illness prognosis; that is, the illness will result in death. The diagnosis period may vary based on the circumstances of individual wish recipients.

We found two key limitations in our search. Firstly, many of the final wish organisers, mostly very small-sized foundations, operate on a limited budget contingent on donations and volunteers, and may not necessarily be in a position to establish and maintain a website. In fact, we excluded two organisers from our study because, whilst initially finding and accessing their websites, the websites were subsequently removed by the organisers during our data collection period. Secondly, it is likely that certain organisers are largely ‘hidden’ and invisible from public view; they may be linked to various hospitals or other medical organisations and final wishes are facilitated privately through these intermediary organisations. As such, from the initial short-list of 28 organisers, only seven met the study’s required criteria and had publicly available webpages.

The seven final wish organisers that met the inclusion criteria of this study were: Dream Foundation, Bucket List Wishes, Bucket List Foundation, Dreamweaver Foundation, The Bucket List Project Foundation, Dreams2Live4 and Race4Life. Many of these organisers were established to honour a terminally ill, or late individual. All final wish organisers continue to accept wish applications and grant wishes during the COVID-19 pandemic.

Results and discussion

Analysis of the text and images

Our analysis revealed that tourism played a significant role in the communication of final wishes (see Table 2). This is perhaps not surprising as people receiving end of life care have been found to want to travel (Marks et al., 2016). Of the webpages we analysed, 110 (31.5%) featured at least one occurrence of a keyword associated with tourism and travel. Further, 87 webpages (24.9%) included a form of transportation connected with the tourism industry. 54 webpages (15.4%) referred to accommodation forms. Many testimonials reported on the websites also evidenced the crucial role of the tourism industry in facilitating final wishes. For example, Leonard’s final wish was to travel to a destination he had never visited with his wife and three sons to create cherished memories. At least eighteen businesses linked with tourism (including accommodation providers, attractions, rental car hire, food outlets and supporting services such as petrol stations) were involved in Leonard’s wish (Race4Life).

Table 2. The presence of tourism related keywords in final wish organisers’ website communications.

Category	Keyword(s) contained in the category	Number of webpages featuring keyword	% of total webpages featuring keyword	Number of times the keyword featured
Tourism and Travel	Travel, tourism, leisure, recreation, holiday, vacation, trip	110	31.5	219
Transportation	Transport, bus, helicopter, limousine, taxi, flight, ferry, train, cruise	87	24.9	174
Accommodation	Accommodation, hotel, motel, resort, campground, apartment	54	15.4	100
Attractions	Attraction, sport, concert, event, theatre, musical, performance, zoo, aquarium	68	19.5	165
Place/Destination	Nature, environment, beach, garden, forest, river, ocean, lake, park	91	26.1	190

Many final wishes promoted a tourism activity central to the wish. Table 2 illustrates that 68 (19.5%) webpages featured a reference to popular tourism attractions such as a sporting event, or a visit to a zoo or concert. These activities appear to be less about popularised iconic ‘bucket list’ experiences which typically involve hedonic choices focussed on individual pleasure (Thurnell-Read, 2017). Rather, the tourism activities promoted were generally more intimate, where connections with loved ones were central. Often, these wishes were promoted to stimulate nostalgic memories. For example, Jackie a 69-year-old mother of three daughters and grandmother of six, wished to ‘sail the ocean and swim with the dolphins’. For Jackie, the beach was symbolic of wonderful times that she had spent with her children and grandchildren, of whom she was now too unwell to care for. Indeed, a significant number of references were made to a place/destination (appearing on 91, 26.1%, of the webpages), highlighting the central role of natural places in the communication of final wishes. This finding is consistent with the noted role of nature in wellbeing and therapeutic wellbeing (Capaldi et al., 2015; Little, 2015). Experiences of nature have also found to enhance the psychological well-being of people who are dying (Gawande, 2014; Turner, 2007).

All final wish organisers communicated parameters around the nature of travel or tourism that could constitute a final wish. For example, Dreams2Live4 noted that they will not grant a wish if, in medical professionals’ views, the wish recipient would not be well enough to receive the wish. Similarly, Bucket List Foundation noted that ‘some wishes have restrictions based on various factors, including the adult's medical condition and terminal illness in relation to the wish request’. Some final wish organisers stated that international travel cannot occur, primarily for budgetary and safety reasons. For example, Dreams2Live4, noted that they ‘cannot support travel outside Australia’, and ‘cruise ship travel is not permitted’. Dreams2Live4 also noted that they would reject ‘any dream request deemed offensive, inappropriate or inconsistent with Dreams2Live4 Ltd values or those of our corporate partners’. Dreamweaver similarly noted that, because they are a charity, ‘funds are limited and there is a budget for each individual Dreamer. Your Dream Maker will work with you within our guidelines’. As such, whilst tourism was found to be a significant element in the communication of final wishes, there remain exclusions because of financial, moral and health reasons that final wish organisers place on the granting of a final wish. These exclusions add to the many practical and medical barriers to travel that individuals with advanced illness face (Marks et al., 2016). Conceptually, these exclusions differentiate final wish tourism from ‘bucket list’ tourism (Thurnell-Read, 2017), which is not limited to the same extent because it is promoted by mainstream tourism organisers primarily as something one does before experiencing the diagnosis of a terminal illness.

Table 3 lists the most common keywords used in the final wish organisers’ website communications. Not surprisingly, the wishes were most communicated using the words ‘dream/dreaming/dreams/dreamed’ (278, 79.7%, webpages) and ‘wish/wished/wishes/wishing’ (140, 40.1%, webpages), denoting the dream element of the final wish. Words such as ‘family/families’ (200, 57.3%, webpages), ‘love/loved’ (172, 49.3%, webpages), ‘connect/connection/connected/connecting’ (49, 14.0%, webpages), ‘precious/cherished’ (54, 15.5%, webpages), and family member types (25, 7.2%, webpages) were also frequently associated with the promotion of final wishes. Previous research has found that terminally ill individuals have a strong desire for family connectedness; they may wish to strengthen familial ties, achieve reconciliation of a family conflict, emotionally connect with the family system and/or ‘establish a continuing bond that would link them with their future generations’ (Ho et al., 2013, p. 959). Emphasising the importance of connection for terminally ill individuals, Race4Life noted, ‘We are so often asked to create wishes that are centred around spending time with loved ones’. For some, a diagnosis of terminal illness led to a desire to reconnect with loved ones that they may had fallen out with. Linda, for example, noted that with regards to her son, Shane, ‘Time, distance and unresolved issues have caused a strain on our relationship’. Two months before her passing, Shane accepted Linda’s final wish of seeing him once again, saying ‘it’s time’ (Bucket List Foundation).

Table 3. Most common keywords used in the website communications.

Category	Keyword(s)	Number of webpages featuring keyword	% of total webpages featuring keyword	Number of times the keyword was featured
Dream element	Dream/dreaming/dreams/dreamed	278	79.7	1923
	Wish/wished/wishes/wishing	140	40.1	1364
Family connectedness	Family/families	200	57.3	601
	Love/loved	172	49.3	481
	Connect/connection/connected/connecting	49	14.0	55
	Precious/cherished	54	15.5	63
	Grandparent/son/daughter/mother/father/child/children	25	7.2	32
Last chance	Last/final	107	30.7	188
	Urgent/quick/haste(ly, ily)	78	22.3	135
	Terminal/terminally	94	26.9	113
	Dead/died/death/dying	62	17.8	70
	Bucket	40	11.5	412
Legacy	Memory(ies)	135	38.7	195
	Trust/trustworthy/trusted	42	12.0	85
	Forever/eternity/eternal/lasting/endless/immortal	40	11.5	49
	Legacy/honour(honor)	33	9.5	49
	Spirit/spirituality	16	2.9	21
	Heaven/god/afterlife	6	1.7	16

The notion that the granting of wishes represented a ‘last chance’ for a particular experience was also evidenced through the websites; 107 (30.7%) webpages contained the word ‘last’ or ‘final’. In Georgia’s wish story, it is noted that Georgia had a desire to visit her beloved beach ‘one last time’. This was to be Georgia’s ‘final dream’ (Dreams2Live4). Perhaps not surprisingly given the prognosis of terminal illness, some wishes needed to be granted with urgency. Indeed, urgency becomes central to the lived experience of someone with diagnosis of a terminal illness (Thomas & Thomas, 2001). The words ‘urgent(ly)’, ‘quick(ly), ‘haste(ily)’, featured on 78 (22.3%) websites. As an example of the urgency in the communication of final wishes, Race4Life communicated that Tali’s wish to travel to Wellington Zoo with her loved ones was sadly not fulfilled due to Tali’s passing. In some cases, final wish organisers asked for urgent assistance from the tourism industry to make the wish possible. For example, Terry’s most treasured wish was to fly with his daughter to see his sister in Idaho. As time was limited, Dreamweaver noted that they, ‘got to work making the necessary travel arrangements, reaching out to our partners at CMT Travel for their help’.

Our analysis of the websites showed evidence of life – rather than death-centred language, relating primarily to the communication of ‘only have one life’ (Dream Foundation) and ‘make a memory’ (Bucket List Wishes). Only 62 (17.8%) of webpages featured the words ‘dead/died/death/dying’. There appears to be support for this in the wider literature wherein communications about death are increasingly avoided (Gawande, 2014). Instead, our analysis found that each final wish organiser’s communications emphasised the notion that, although an individual’s human life may be ending, the granting of a wish would create immortality through the creation of a personal legacy and/or valued memories that would be cherished by loved ones. Words such as ‘memory(ies)’ (135, 38.7%, webpages) ‘legacy/honour’ (33, 9.5%, webpages), ‘forever/eternity/eternal/lasting/endless/immortal’ (40, 11.5%, webpages) were used throughout the communications. Legacy-making is argued to help cope with powerful emotions of grief and loss felt by the bereaved (Schaefer et al., 2020).

To support the textual analysis, all images depicted on each of the seven final wish organisers’ home pages were analysed. A website’s home page is generally considered the page that most clearly expresses the purpose of a website and is the first and most important page Google considers when analysing websites (Carter, 2022). Our analysis of the final wish organisers’ home pages determined that 121 images contained people and, of these images, 65 (53.7%) contained groups of people of mixed ages. As such, the promotion of final wishes is not age related. 24 people (19.8%) were estimated to be aged between 20 and 40, 28 people (23.1%) aged between 50–70 and 4 people (3.3%) aged 80 + . The images contained 199 men (48.1%), 193 women (46.6%) and 22 people of indeterminate gender (5.3%). People were generally shown alone (41, 33.9%, images), or in groups of 5 or more people (30, 24.8%, images), reaffirming connection through a final wish.

Analysis of the key features of the images portraying people revealed that the majority of them showed people looking directly at the camera (83, 68.6%, images), and 84 images (69.4%) depicted people looking happy (Table 4). Eye contact between website viewer and the terminally ill adult appeared to be prominent and is said to build rapport, trust, embody empathy, and enhance the impact of a message (MacDonald, 2009). There were also images of what appear to be married or de facto couples hugging and facing the camera (22, 18.2%, images); the scenes evoking heartfelt emotions and perhaps hinting at a fear that many may have – of being fearful for those that remain living (Gawande, 2014). This potentially illustrates the paradox of communicating final wishes for adults with a terminal illness, wherein the granting of final wishes are of happy people, joyous occasions and the filtering away of negative memories set alongside the sadness and stress of impending death of a loved one (Walker et al., 2003). This tension is also reflected in the understanding that what constitutes ‘a good death’ is constructed not only by the person who is terminally ill; family, friends, health care providers and wish organisers all participate in the construction of end-of-life experiences (Steinhauser et al., 2000).

Table 4. Key features of homepage images portraying people.

Image Feature	Featured	Not Featured	% of homepages – Featured
People are happy	84	37	69.4
People are looking directly at camera	83	38	68.6
People are engaging in a tourism/recreation experience	76	45	62.9
Two or more people of apparent generational difference	59	62	48.8
Couples who appear to be in a married/de facto relationship	22	99	18.2
Black and white image portraying people	19	102	15.7

We found further evidence of the importance of others in the construction and mediation of the final wish. The impact of a terminal illness diagnosis on a family or loved ones was reinforced visually through the selection of photos used on the websites signalling generational legacy (59, 48.8%, images). Specifically, the websites featured multiple juxtapositions of the old and the young, suggesting that terminal illness affects all ages, and raising the significance of intergenerational memories.

Some images evoked emotions of sadness, contemplation, togetherness, suggesting a poignant final goodbye. For example, Bucket List Wishes’ ‘About Us’ page presents a black and white photo of a tender moment between the founder of the final wish organiser and her mother. Black and white photography can heighten the emotion of a subject, particularly as it eliminates bright background colours that can compete for the eye’s attention (Shiva, 2020). However, most images depicted people smiling, laughing and experiencing happiness (84, 69.4% of webpages featuring people were expressing happiness, see Table 4). Thus, the dominant narrative appears to be that final wishes are happy, positive experiences that are cherished by individuals with a terminal illness and their loved ones.

Of the 95 images not containing people on the final wish organisers’ homepages, 57 (60.0%) images were logos of either the final wish organiser or their industry supporters, or links to social media sites. Figure 1 shows Dream Foundation’s logo that is based on blue stylised letters that do not close, representing eternity. The logo hints at a connection to a continuance of life after life on earth ends. The colour blue is symbolic of tranquillity, serenity and calmness (Smith, 2022) and the imagery may also relate to the notion of looking down upon loved ones after someone passes. The lasting memory helps to create a sense of ongoing presence for the living and ensure continuity and strengthening of human attachments (Boles & Jones, 2021).

Figure 1. Dream Foundation's Logo.

Twelve images (12.7%) depicted stylised love hearts, and 26 images (27.4%) depicted scenes of nature and evocations of flight. These images included blue sky, flowers, leaves, trees, butterflies, stars and hot air balloons. For example, Dream Foundation’s website features a predominance of sky-blue colours and images of clouds. This imagery is suggestive of heaven or the afterlife; from a young age, children are taught to associate clouds and blue skies with heaven (Talley, 2017). Further, the bottom of the home page features an oversized image of a brightly coloured hot air balloon. This could symbolise an ascension and evokes thoughts of heaven. It may also be interpreted as reaching new heights that others cannot access. This imagery gives some credence to the notion that terminal illness is deeply spiritual. Indeed, individuals living with a terminal illness are found to experience a pronounced urgency in embracing their personal quest for meaning and in seeking experiences of transcendence and connectedness with a higher power (Leung et al., 2006). This would seem to illustrate that the wish providers communicate their perceived role in this context as enabler of cherished memories that build this spiritual meaning.

Discursive practice

Discursive practice involves consideration of how final wishes are distributed, produced and consumed/interpreted. The final wish organisers’ websites are distributed to those who search and find them online. Most final wish organisers require applications for a final wish to be completed on the website. Generally, the wish form could be completed by anyone, but Bucket List Project Foundation is currently ‘only allowing approved social workers in the Long Beach area to fill out our Wish Request form’ (Bucket List Project Foundation, Wish Requests). Only Dream Foundation and Race4Life provided the option of downloading the application form and posting it. This poses the question: are some individuals with terminal illness further marginalised because they cannot access, or are not confident in accessing technology?

In their online messaging, final wish organisers position themselves in an important and powerful role of service producer of the final wish. For example, Race4Life aims to, ‘enable people, living with life limiting illness, to realise dreams that they, and their families can cherish’ to emphasise its role of producing and giving. Further to this, each final wish organiser commonly communicates that they are driven by compassion and love. For example, Dream Foundation’s website incorporates love hearts across a map of America. In doing this, final wish organisers commonly attempt to communicate that they are heartfelt constructors and providers of the final dream, albeit restrictions may exist to accessing a final wish.

Each website uses pathos to present a heartfelt call for volunteers and communicates multiple requests for donations from individual or corporate donors to enable the granting of final wishes. Whilst the final wish organisers assume a powerful role as service producer and provider, they can only achieve this with wider support from donors. There is evidence therefore of multiple audiences for the organisers’ communications to both encourage a final wish and enable it to be granted/carried out. Specifically, the website communications move between offering consoling, comforting messages and emotive images about final dreams, to words of effusive praise about what the foundation has achieved in order to attract donations and volunteers. This creates a demonstrable difference in the narrative and image styles of different pages within the same websites.

Whilst the consumers of the final wish are adults with a terminal illness and their loved ones, some website communications did not feature the direct voices of the wish recipients. While each of the seven websites contained multiple wish stories, only three final wish organisers used direct quotes from wish recipients. This prompts questions about the consumption and production of communications that have not been experienced first-hand, and who interprets what is important to say in those communications. As a literary device, the communications thus ‘construct and communicate a point of view’ that starts to ‘open up gaps between the narrator’s perspective’ with the direct experience of the person with a terminal illness which may ‘modify the image’ and values being communicated (Lejeune et al., 1977, p. 41).

Socio-cultural practice

The website communications of the final wish organisers are emotive and symbolic in form. Rather than reflecting wider discourses of terminal illness as distressing and difficult (Gawande, 2014), our analysis revealed a discourse around the significant dream-fulfilling and memory-making potential of tourism as a final wish. The final wish is promoted as about love, family, connection, contemplation, infinity, ascension, spirituality, bucket list dreams and a way of improving and gaining meaning from life (‘before I die’) for those with a terminal illness, and through positive, happy, lasting memories and legacy for those left behind. In this way, tourism is framed as a potential transformational concept promoted as beneficial in the imminent time before death, as a legacy during life, and after death. The granting of a final travel wish can potentially enable agency and empowerment at a time fraught with stress and lack of control, both for the adult with a terminal illness as well as their loved ones (Coelho et al., 2020; Goldsteen et al., 2006). There is a particular paradox therefore to the communications that construct the granting of a happy living memory out of a dying wish.

Website communications positioned the final wish as a living memory and legacy builder for the wish recipient; the sharing of the wish assisted loved ones left behind in their process of loss and grief. Indeed, scholars have found that facilitating meaningful experiences that are shared with loved ones can offer solace and comfort to individuals with terminal illness and their carers (Fearnley, 2015; Rhoads, 2009; Walter, 1996). These benefits can be far greater than those afforded through respite care (McGuigan et al., 2015). This presents an important consideration; final wish organisers, though they may be few, communicate their ability to play a significant producer and service role in the life of adults granted a final wish, and their loved ones. Critically, our findings proffer that a discourse around tourism and legacy may render the granting of final wishes in the last stages of an individual’s life more about others, rather than the individual with a terminal illness, and position the final wish organiser as a powerful agent in the process. They appear to position themselves as playing a central role in crafting, facilitating, communicating and mediating experiences that can be central in the granting and development of memories and legacies between family members and friends. Shared memories may be central to what Gawande (2014) calls the ultimate goal, that is, not of a good death, but a good life – all the way to the very end. It is well acknowledged that tourism provides an individual with ‘a density of good memories’ (Desforges, 2000, p. 236); our results show how the granting of a wish could heighten evidence of an individual having lived a life well and continue that memory for those left grieving for the loved one who has passed.

The final wish is thus positioned as occurring at an acutely extraordinary time; a time that will shape powerful memories and narratives about loved ones long after a diagnosed individual has passed. The feeling of regret, of missing out on life experiences is felt sharply by the terminally ill and their loved ones (Gawande, 2014). Upon facing mortality, it is common for people to reflect on regrets of not saying words of affection or engaging in shared experiences with loved ones (Ware, 2012). Dying people want truth, hope, touch and time (Kuhl et al., 2010). Indeed, tourism is seen as being an ‘extraordinary’ time (Gordon, 1986), perhaps more extraordinary in this context because there is time to plan travel before an individual’s death; to touch and provide comfort physically and emotionally, and to build hope and legacy. Thus, the narrative of a final wish presents the terminally ill and their loved ones with an opportunity to minimise common regrets such as ‘I wish we had travelled there or spent more time together’. We found that the final wish organisers certainly appear to have tapped into this discourse in their website communications.

There were also potential tensions and silences noted in our analysis of the website communications. Specifically, from a final wish organiser’s perspective, tensions exist as to the balancing of power and communication between promoting happy memories of final dreams versus impending death. As noted in our study, there appear noticeably less frequent use of words relating to death and dying. This perhaps mirrors a taboo in Western societies on talking about death (Gawande, 2014). This language taps into wider discourses about what it means to be terminally ill, the notion of a ‘good death’, and promotion of the ‘heroic’ person (Carpentier & Van Brussel, 2012) that present positive perspectives around the discourse of death and dying. Furthermore, each website faces the challenge of communicating to competing audiences. They must provide a service to society’s most vulnerable, ensure the ability for the dream to be undertaken, encourage donations, build loyalty and trust, credibility and legitimacy. Yet, as we have noted, there were notable silences from any empowering inclusion or voice attributed to the terminally ill. As many of these organisations operate under very tight financial circumstances, the importance of attracting donors and philanthropists to the website through the heroic ideology of granting final dreams may well be a more significant communication task and certainly worthy of further investigation.

Conclusion

A critical discourse analysis of final wish organisers’ websites illuminated a uniquely powerful discourse around tourism as a final wish. The discourse imbued tourism with significant dream-fulfilling, memory-making and legacy building potential in the context of terminal illness. Consideration of the communications of final wish organisers is vital because, when discussing the final stages of life for an adult with a terminal illness, words and images matter – they can inspire, inform, transform, exclude and harm (Jaworska & Ryan, 2018; Shanahan, 2020). Misplaced words can unwittingly inflict pain at a vulnerable time, ‘not only onto patients, but also onto friends and families, ultimately poisoning the dying or grieving process’ (Kuhl et al., 2010, p. 1707). Equally, silences may be necessary and important, for example around death and dying. Thus, we recommend that final wish organisers, and indeed all stakeholders who communicate with terminally ill individuals, ensure that the discourses embedded in their communications empower, and are sensitive to the needs of, their vulnerable audience whilst promoting the significant benefits of a final wish.

Our study found different power relations at play. As the final wish organisers hold the power to ‘give memories’, ‘grant wishes’ and service to those worthy of it, the wishes granted were exclusionary. Notably, some types of wishes and wish recipients are determined more deserving than others. Furthermore, many wishes required independent travel without medical support, or were types of travel that could not be granted. A Western philosophy of death and travel also appears dominant in our study, although this is not surprising given the location of the final wish organisers. Whether power differences are intended or not, our study reaffirms tourism in this context as a marginalising activity. To render a final wish more inclusive, we recommend stakeholders critically consider their means to make a final tourism wish more accessible, such as through an evaluation of additional infrastructure, specific support needs, communication channels, and diversity of recipient. We found only a few final wish organisers, ones that communicate they rely on donations, who grant dying wishes through travel for adults with terminal illness. The final wish organisers appear to operate in a more limiting way than some other social tourism providers who are more likely to be publicly funded, as they rely on the goodwill of volunteers and donors, and mostly operate without the medical care support afforded through some other respite and hospice options. There is a greater need for collaboration with stakeholders, including governmental organisations, health professionals, and the wider tourism industry, to render a final wish less marginalising.

We urge future researchers to further consider the exclusionary nature of tourism in the context of terminal illness, but equally its memory-making potential for the most vulnerable tourists in their final days. The role, communications, and potentially conflicting agendas, or beliefs, of the final wish intermediaries within this warrant greater consideration. Understanding terminal illness in the context of tourism can contribute to the wider scholarly movement exploring how hopeful, or transformative tourism relationships can be accessed by all (Hunter-Jones et al., 2020). Conceptually, social tourism promotes strategies that facilitate inclusive and accessible tourism experiences for everyone to enjoy, particularly those groups that may be vulnerable or previously excluded (McCabe, 2020). Social tourism’s inclusionary agenda is strongly linked to the ‘Tourism for All’ movement (Diekmann et al., 2020) and focuses on a strong desire to ‘seek inclusion for marginalised, vulnerable or bottom of the pyramid consumers’ (Hunter-Jones et al., 2020, p. 1). This paper has illustrated how the terminally ill may be marginalised in tourism; their time is finite and tourism activities may be experienced under a cloud of fear, anxiety, depression and physical constraints associated with their diagnosis. They may feel disempowered and reliant on others who are in comparably good health to determine whether a tourism experience can be facilitated. Further, travel may be inaccessible or impossible (Hunter-Jones et al., 2020). Thus, ensuring that terminally ill individuals can participate in meaningful travel experiences is arguably central to the social tourism agenda, although that remains to be made explicit in scholarship.

Further, there is a need for additional scholarly insight into why many individuals with a terminal illness want to travel but do not do so (Hunter-Jones et al., 2020). Future research could build upon the perspectives put forward in this paper by seeking to understand the voices of the individuals with a terminal illness themselves, their families, the application process, noting the important ethical, moral and methodological considerations, and silences, involved. Examining wish recipient testimonials on social media may be one way to achieve further authentic insights about tourism as a final wish. The meaning of what constitutes a ‘good death’, its potentially spiritual nature, and how final wishes through tourism can facilitate cherished memories, will likely differ between cultural, religious, demographic and geographical settings. As the findings of this research cannot be generalised, there is scope to consider differing contexts and perspectives of terminal illness in future research. In so doing, our understanding of tourism for all is enhanced, particularly with regards to its relationship with terminal illness. Charities, industry and policymakers will then have further opportunities to enhance inclusion and create uplifting changes for the ill (Hunter-Jones et al., 2020), and form a better strategy toward the communication challenges posed by the discourse of terminal illness and tourism.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by Edith Cowan University Markets and Services Research Centre Grant: [17608.6176].

Notes on contributors

G. B. Willson

Gregory B. Willson is a Senior Lecturer in the School of Business and Law at Edith Cowan University, Australia. Dr Willson has published high quality research focusing on spiritual tourism and specifically, the personal meaning that individuals derive from tourism experiences. His current research interest focuses on enhancing the tourism experience for individuals with ill-health. Dr Willson has received teaching awards based on his collaboration with not-for-profit organisations and is an active volunteer in his community.

A. J. McIntosh

Alison J. McIntosh is Professor of Tourism in the School of Hospitality and Tourism at Auckland University of Technology (AUT), New Zealand. Professor McIntosh is known internationally for her work as a critical tourism scholar. Her research prioritises otherwise unheard voices, personal dimensions, distinct types of tourism encounters, and tourism in marginalised contexts. She is an active advocate of social change through meaningful research-community partnerships. In 2019, she established AUT's Tourism For All New Zealand Research Group to champion accessible and inclusive tourism.

C. Cockburn-Wootten

Cheryl Cockburn-Wootten is Associate Professor and is a critical scholar, interested in the communicative aspects of managing the act of organising for change. Much of her work has focused on under-examined areas, adopting critical management communication theories to examine aspects of organising for change within issues such as inhospitable workplaces, accessibility/disability, refugee-background, and migrant communities. Her research interests and teaching fall within the community stakeholder engagement area, with a focus on tourism, critical hospitality, equity, dignity, accessibility, and refugee-background communities.