DYING WITH SMARTPHONES
Daniel Miller
The hospice movement has grown up respecting that most people want to die in their own homes, even when they are living alone. But where is that home? This paper will suggest that smartphones have changed both what we mean by home and living alone. Smartphones may also presage a fundamental shift in palliative care, as innovation moves from professionals to the wider population.
Already the majority of people over 65 in the US use smartphones (1), and in the future most people with a terminal condition will possess one. The smartphone is far more than just a phone; voice calls are only one component among a range of aggregated features which have taken the place of prior devices. I currently lead a project team of ten anthropologists in a project called ASSA (the anthropology of smartphones, smart ageing and mHealth) who have each recently completed a 16-month study of smartphone usage in field-sites ranging from Santiago to Kampala and Kyoto (2). We have witnessed how smartphones are becoming part of us, rather than simply something we use. Humanity has always been fascinated by visions of anthropomorphic machines, whether robots or cyborgs, partly on the more superficial grounds of appearance. A smartphone looks not one iota like a person, but connects with us through intimacy rather than appearance. First the smartphone owner configures their individual device with downloaded apps, rather than those which were pre-installed. Meanwhile companies develop artificial intelligence and algorithms to enable these applications to learn about us and respond better to our specific personalities and predilections. The phone thereby becomes expressive of the gruff fisherman or highly organised professional. Through this dual process the smartphone is domesticated to become a kind of personal home.
Think of the smartphone as a place within which we can dwell; where we compose our thoughts, zone out from the wider world and live much of our life. Living within the smartphone might represent a growing separation from other people (the real world), in favour of spending time in front of screens (the virtual world). But it can also be viewed as the exact opposite. Watching television when living alone is solitary. But a considerable amount of smartphone use is for social communication, the precise purpose of the traditional phone. In the US adults over 60, living alone, spend around 10 hours a day by themselves (3). Alone in their bricks and mortar home, but potentially interacting with others from their smartphone home.
One consequence of smartphones is that people have many more choices over their preferred means of communication, which may not be those chosen by medical professionals. A doctor may assume that face-to-face is always best for discussing a serious prognosis. But in my research with hospice patients in the UK (4) I found that some individuals with a terminal diagnosis may find this situation too pressurising The context forces them to make an immediate appraisal and response, without time to consider this new information adequately and work out for themselves what they feel. A man with a terminal diagnosis explained to me that in the middle of the quiet night, on a computer, he could compose a careful response to awful news about how his life might end. One patient might prefer WhatsApp, another webcam, and a third prefers voice calls. Many people now first want a text that confirms if this is a good time to speak. Dying is a period when we should be ceding authority to the requirements of dignity and care.
Secondly, until now the implementation of new communication technology in health care has been largely top-down developments, devised by large corporations and then employed by health services. But attempts to develop technologies such as telemedicine are very expensive and quickly outdated. In the future the creativity in new communication technologies will come mainly from observing what patients themselves do with their extremely impressive but adaptable technologies: the patient with Parkinson’s disease who adapts the little wooden stand she used for her recipe books to steady her iPad, or the creativity of otherwise bored grandchildren who decide the best way to support their grandparents is through showing them how to use smartphones to resolve an issue of frailty. Instead of wasting money creating systems, we could observe patient `best practice’. A Facebook group for palliative nurses could then exchange such information about patients’ innovations.
This has become the approach of our project team to mHealth. mHealth has mainly signified the attempts by medical professionals or technical experts to create bespoke smartphone apps. There is huge commercial interest in this sector. While some of these will be valuable contributions, our evidence is that most people eschew bespoke health apps, except in quite specialist circumstance. People may try out a new app once or twice, but then abandon it. Many apps appear promising at the pilot stage but are not widely adopted (5).
There is, however, an alternative meaning for the term mHealth, one which proved more rewarding for our research. It focuses on the way smartphones are already employed daily by patients and medical professionals. For example, we have observed many creative uses of WhatsApp for health purposes across our field-sites. Because WhatsApp can include text, phone and video, and send pdfs and images, it can be used for organising appointments, medical screening, renewing prescriptions, sending and clarifying results. We have compiled a manual based on these observations in our Brazil field-site that could be emulated more widely (6). In our current work with oncology nurses in Chile, we find that they have already made WhatsApp central to their own crucial role in continuously mediating between doctors and patients and initiating many forms of care at a distance.
In Ireland we found that WhatsApp rapidly became the single most important app employed when someone has a terminal condition. Most of our participants, faced with an elderly or dying parent, have spontaneously established family WhatsApp groups and found these highly effective as a means to coordinate support, send pictures, video chat with family living abroad and accomplish many other tasks. WhatsApp has facilitated both a logistical and an emotional connection. For most people with a terminal diagnosis, a core concern is their relationship with the people they love.
For impoverished people in Uganda, smartphones are important mainly because they can be used to transfer money, because illness and death is always a financial crisis for the poor (7). Because of its facility for sending visual information such as photographs, we have found smartphones to be particularly helpful for people with limited literacy. A major facility of online communications is the space to discuss difficult and embarrassing topics. For example, in China there is widespread taboo against talking about dying (8). But social media has become the first space where people experience the possibility of talking to strangers on this subject (9). Working with hospice patients in the UK I found that we need two kinds of forums: one for those who want to discuss delicate issues around chemotherapy, but only with people who cannot know who they are, and another for patients who only wish to discuss these intimate matters with people they can actually see or know. All of this points to an alternative meaning for mHealth. Not the creation of bespoke medical apps, but rather learning from creative usage, collating this evidence and scaling up from best practice. Smart could and should mean smart from below, not always top-down technology.
Focusing on the already ubiquitous use of smartphones reveals negative as well as positive consequences. Googling is now established as the means for researching health information. We found it often exacerbates class differences. It helps the well-educated to become better informed and the uninformed to become more misinformed and anxious. At present many elderly, dying patients are faced with a rapidly advancing new form of discrimination. If they cannot go online, they face excessive costs for booking by phone or having something sent. They are pressured to learn new skills at a time when they are coming to terms with their own diminished faculties. Although a loss of capacity might be mitigated by the capacities of new technologies, at present these technologies can be intimidating and oppressive. Smartphones can facilitate autonomy, but also dependence. People are being excluded from the world while they are still alive. How might we respond? We need to protect and preserve the dignity of people who struggle to access digital health services by not forcing them to learn burdensome skills, but mediating on their behalf access to health support and other services. Where we see that these technologies might be helpful and acceptable, they should be introduced before a patient becomes too frail. Media such as video chat and Facebook, once thought to be the provenance of the young, may actually be more valuable to older people who have become immobile. The foundation of support is sensitivity to the specific person, and whether they should be encouraged to employ such technologies or provided with access to alternatives.
New communication technologies do not just impact upon the experience of dying patients. They have also created a major shift in how the dead are mourned (10). Traditionally, mourning has followed along lines bequeathed by religions, with formal periods when it is appropriate to grieve. But our concept of the authentic person has changed from formality to informality. Instead of asking people to pose with a fixed smile, we try and take spontaneous photos that capture the `real’ person. Within a few years of its creation, many Facebook users had died, and it became very common for their profile to become a shrine. This enabled grieving friends to post at whatever time they wished, often including comic and informal materials, and allowed mourning to evolve towards our contemporary sense of the authentic individual. At the same time, people are faced with a digital legacy that lives after them and questions of what should happen to such materials and who should have control over them.
Anthropologists focus upon context. The consequences of smartphone use are always relative to other communication, including face-to-face interaction. Video chat may positively enhance a phone call but negatively become an excuse not to visit. We should not assume we can extrapolate from any one group – what is appropriate in Cameroon may not be acceptable in Japan. We need first to alert ourselves to the diverse possibilities and then to develop sensitivity to the specific population and most of all to the individual person of concern. Smartphones have remarkable capacities, clearly relevant to issues of dying alone or developing care at a distance. But these capacities are more likely to be realised if we focus more on learning how and why people make constant use of them, rather than assuming we have to invent our own solutions.
1) https://www.pewinternet.org/fact-sheet/mobile/
2) https://www.ucl.ac.uk/anthropology/assa/ Funding from the European Research Council.
4) Miller, D. 2017 The Comfort of People. Cambridge: Polity Press
5) Huang, F, Blaskchke, S and Lucas H. 2017 ‘Beyond pilotitis: taking digital health interventions to the national level in China and Uganda’. Globalization and Health 13: article 49.
6) Duque, M. 2019 (ref in Portuguese)
7) Ref forthcoming,
8) Tse, C Y, Chong, A, Fok, S Y, 2003 Breaking bad news: a Chinese perspective. Palliative Medicine, 17 (4) 339-343
7) McDonald, T. 2016 Social Media in Rural China. London: UCL Press 102-3, 176-8.
8) Arnold, M. Gibbs, M, Kohn, T, Meese. J Nansen, B. 2018 Death and Digital Media. London: Routledge. Walter, T. Hourizi, R and Moncur W. Does the Internet Change How We Die and Mourn? Overview and Analysis. Omega 64: 2012: 275–30
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