An emerging field of research

The emergence of a newer area of focus, that of analysing trends in social media vis-à-vis end of life care, appears to have been embraced by researchers in anthropology, social sciences, death studies and computer sciences and it is likely that medicine in general and palliative care in particular will follow suit. As an example within the field of medical research, Greene et al19 used social media searches to qualitatively evaluate the content of communication in Facebook communities dedicated to diabetes.

But there is a larger, more established body of research on digital death and dying in the field of social sciences. Searching the social sciences literature with keywords such as ‘(after-)death’, ‘memorializing’, ‘grieving’, ‘hybridization’, ‘publics’, ‘rituals’ and ‘historicization’ revealed a number of discussion, opinion and research articles surrounding digital death and dying. Research, in particular, focuses strongly on online memorial sites and in particular looks at the content of what is written there and how people grieve online, but concludes that analyses of practices on how the ‘digital self’ is managed after death have only just begun.20

Professor Daniel Miller, an anthropologist, is conducting research on end of life care practices in relation to new media and this is a 3-year project extending to 2015.21 This research illustrates both positive and negative aspects of social media use in this population, as reported by hospice staff. One example cited a story about a death being relayed on Facebook before most relatives had been informed by more appropriate channels. More positively, social media were seen to lead to an avoidance of isolation for those individuals who were undergoing chemotherapy. Being susceptible to infection made it more difficult to socialise with friends or family in person, so social media microblogs became particularly valuable as a way of avoiding isolation and staying in touch.

The broader context of social media and end-of-life care and communication is examined extensively by Carla Sofka et al22 ,23 who argue that we have always employed the latest advances in our approaches to death and dying and grieving and that this significantly impacts on how society organises behaviours around dying and death.

In the field of death studies, Walter et al24 provide an analysis of contemporary trends in online practices related to death and dying and find that they may affect funerals, as well as grief and memorialisation, inheritance and even archaeology. Social network sites have to some extent brought grieving and dying out of the private domain into the everyday life of the online world. They also open up another aspect of digital death, that of posterity creation.

Posterity in the digital realm?

The psychologist Roy Baumeister has argued that the length of time most of us might expect to be remembered for is a maximum of 70 years, pointing out that not many people can name their great-grandparents.25 The philosopher Stephen Cave, in his book Immortality, has described the phenomenon of symbolic reproduction and posterity within online social networking contexts.26 To this effect, David Giles, a psychologist, has called physical aspects of posterity creation, such as statues, records, diaries and images of individuals past and present, a ‘reproduction of the self’.27 Once merely the jealously guarded domain of royalty, conquerors and politicians, we have today myriad opportunities to symbolically reproduce our own selves, for example via photos, videos and blogs, and for these reproductions to remain present and accessible while our bodily selves have disintegrated.28 The current explosion of digitalised social media is perhaps the greatest opening of the cultural world since printing presses started rolling in the 15th century. Individuals’ personalised spaces created and shared within the digital space are now the norm, and may be of great significance to those who remain once the page's owner has died. Creating this form of online diary and making it available for posterity can therefore be an incredibly powerful and meaningful way of expression for those still living but faced with death.

It will therefore be possible for our great-grandchildren to click on our social media microblog site timelines, and get an impression of our entire lives. This has lead to social media sites creating settings and rules for what happens to the pages of the deceased.29 A ‘Memorial Page’ function has been available for Facebook users who have died for some time now. These facilities are called online ‘memorialisation services’, and can be microblog site specific, or even extended to the entire internet. In fact, some companies now offer a digital legacy service, with photos, videos, blogs and status updates from the past collected from the entirety of the internet and transmitted to electronic devices in a real, physical gravestone, whence it is beamed to passers-by.26 Such phenomena may become the norm, and we may soon be less surprised to see them in our everyday (working) lives. For example, palliative care and other healthcare staff may be asked to contribute to lighting virtual candles online, with sites offering services as described in box 1. This will, naturally, bring with it discussions surrounding privacy and appropriateness and may cause considerable disagreement within families of people who have passed away. Some may wish for content to remain online, while others may wish for it to be removed entirely.

There are also digital social media developments that extend beyond a person's natural death. Preparing in advance what gets posted after death is now possible via websites like DeadSocial31 (see figure 1). The site helps Facebook and Twitter users prepare items to be posted at specific future dates and can help send (preprepared) messages to loved ones, for example, on their birthdays well into the future.

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Figure 1

DeadSocial website where users can prime their Facebook and Twitter accounts to post future status updates after they have died.

#Social media history?

Questions arise from the many facets of social media impacting on end of life care. Are palliative care services ready for all of this? Do health and social care professionals working in the specialty know how to respond when someone asks them whether their personal online page will remain visible forever after they die? And if not, do they know how to respond or who to ask for advice on this? Do palliative care specific medical, nursing and/or family support worker notes need a section entitled ‘Social Media History’ in a similar way that we frequently focus on people's spiritual background? Could this, in fact, be part of the spirituality assessment, given the importance this has on peoples’ legacies and memories, in a similar way to memory boxes? Beverly Smith in a case report argues that because a palliative care team guides patients and family members through the grieving process and its accompanying pitfalls, social media use should not necessarily be seen as separate within the context of holistic care.32

Another case report in Palliative Medicine describes a young patient with pontine glioblastoma multiforme who used social media as a form of expressing his grief and his emotions and took some comfort in being able to do so. Staff at the hospice where he was being treated were aware of his blog, and were given an insight into his thoughts at each stage of his illness.33 We need to be aware that both patients and their families and friends may be reviewing services online, and may have a wide reach and local readership (see box 2).

In the USA, a well-known radio show host called Scott Simon tweeted from a Chicago hospital room; his mother had entered the ICU there, following surgery. She died during that admission, at the age of 84. In the week before her death, Simon began live-tweeting his mother's final days to almost 1.3 million followers from her hospital room.34 There was an extraordinary response to Simon's tweets, ranging from members of the public to the media. This highlighted to many that there appears to be a huge need for Americans to find ways to integrate death and mourning into their lives, a need met by social media feeds such as Scott Simon's. Microblogs are changing the way people are mourning across the planet by creating a public space for it.

Pandora's box?

While it is tempting to not open the potential Pandora's box that the questions raised above bring with them, it is worth staying abreast of ongoing social media developments as much as possible. We simply cannot feign ignorance about all matters to do with the internet, as many patients and their friends and families will see this as important legacy building, and will also expect us to be able to communicate with them appropriately. In the same way that years ago we would not have turned anyone away asking to create a memory box for their family and children once they are gone, we now cannot ignore the fact that end-of-life matters have taken a significant shift into the online world, and that increasingly we will be set difficult, sometimes ethically dubious challenges. The young, terminally ill Dr Kate Granger's Twitter feed has and is being viewed by the public, the media and the healthcare profession with avid interest, and has started a debate about ‘deathbed tweets’.35 ,36 In Germany, the blog of the now deceased author Wolfgang Herrndorf attracted a large amount of attention and discussion.37 Some further examples of where to start looking up current blogs, trends and discussions are provided in box 3.

It is vital that palliative care workers are aware of the potential benefits and harm that the world of social media can have in the death and dying ‘arena’. This article can only discuss some of the ramifications and permutations of events that occur online, but our aim was to provide an overview of some of the current and possible future developments, in particular surrounding digital legacy building and memorialisation. Social media have the potential to cause significant harm and breakdown in the stressful environment that surrounds the death of a family member. But while they are sometimes criticised for lacking emotional depth, those professionals working with grieving people may see them as a potential further option to use as a means of communication and follow-up, in addition to the more traditional ways of support. The ethical questions remain as do the questions of appropriateness and will need a very individualised approach. However, in a growing internet family with ‘mass collaboration’ these questions are likely to be raised with increasing frequency and in more local situations, so we all need to be prepared to enable the best advice and service to our patients.