The Comfort of People (2017)

In 2017 I published a book called The Comfort of People (2017 Cambridge:Polity Press), based on research amongst people who had received a terminal diagnosis and were being looked after by a hospice. In that book I made various recommendation for how the hospice might employ new media. More recently I was approached by a group who have been commissioned by the journal The Lancet to develop a special issue around the topic ‘The Value of Dying’. My contribution is called Dying with Smartphones. Much of the time since writing The Comfort of People has been spent in the ASSA project, so this more recent contribution reflects what I have subsequently learnt. The topic is significant, since given the rapid expansion in the usage of smartphones by older people, we might expect that in the future most people will ‘die with smartphones’.

One of the reasons new media matters to the hospice is that most people want to die in their own homes, or at least stay there as long as possible, so most hospice work involved going to, or communicating with, people at home rather than them coming to the hospice. A key finding in our current project, the Anthropology of Smartphones and Smart Ageing, is the appreciation of how much the smartphone has become what we can call ‘the Transportal Home’. On the one hand, it has become a place people live within rather than just a device they use, where they compose their thoughts and entertain themselves. On the other hand, it has huge potential in relation to loneliness and isolation since it is the portal through which we communicate with other people; very different from just watching television. So, the smartphone ‘home’ can be quite convivial. The ASSA project also reinforced the our theory of ‘polymedia’, which posits that different people feel comfortable with different forms of communication and the hospice should not assume which media suits which person. One patient might prefer WhatsApp, another might prefer communicating via webcam, and a third might prefer voice calls. Many people now first want a text that confirms if this is a good time to speak. So the sensitivity of the hospice can be expressed by following patient preferences with regard to how they communicate with people now living within this Transportal Home.

The ASSA project has also seen a huge expansion in something that was just starting during the hospice research, which is the creation of WhatsApp groups by relatives to support the patient. The team members in Brazil and Chile have observed how WhatsApp can be used by medical staff to manage patient requests and other purposes. In general, our project’s conclusion, which focuses on the free and ubiquitous apps that most people already use, rather than bespoke mHealth apps, also applies to palliative care. Each fieldsite offers additional insights. For participants in Kampala, one of the primary uses of smartphones and mobile phones is to send mobile money. These remittances would often be sent to support relatives’ health needs, such as transportation to the hospital and medical fees. Smartphones can also be helpful for people with limited literacy because of the capacity to send visual communication such as photographs.

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. For many, social media has become the first space where people experience the possibility of talking to strangers on this subject. Working with hospice patients in the UK, I found that we need two kinds of forums. One is for those who want to discuss delicate issues around chemotherapy, but only with people who cannot know who they are. Then we need another for patients who only wish to discuss these intimate matters with people they can actually see or know.

Although the ASSA project is not based on studying people with a terminal condition, I very much hope that in the future it will provide useful pointers to the way we can improve our support for people who increasingly will be dying with smartphones.

In Uganda, 70% of the workforce is employed in the ‘informal sector’ [UBOS, 2014], mostly self-employed in unregistered business. This is reflected in Lusozi, the Kampala fieldsite, where the majority of interviewees run their own small business, such as hawking fruits, market vending, driving bodas (motorbike taxis) and brewing waragi. Many of these jobs require physical labour.

The deterioration of physical health, accelerated by physically demanding work, can mean that old age presents a significant challenge to people who rely on their bodies for their income. This is the case for Achola’s husband, who throughout our recent interview, was busy bending to serve food to frequent lunchtime customers. It turned out he had chronic back pain. A visit to the hospital the day before had confirmed that ‘his spine is splitting’, a slipped disk. He’s not responded to other treatments and can’t afford a brace, so they’ve recommended surgery, but he’s nervous to weaken himself; he needs to work for his wife and grandchildren, and elderly relatives in the village. He was even planning to take the 10 hour bus to visit them the following day, ‘I have to go and farm, it’s the month’.

65 year old Palma also has back problems after 30 years of ‘moving with bananas’, carrying a basket to sell in town. She has to continue working to support her 3 orphaned grandchildren. ‘It was her parents to take care of them and her’, but now she has to do it alone. She struggles to pay their school fees, and in return, they cook, wash and clean for her. Sometimes she falls sick, and the family must rely on her neighbours to bring them food. Whilst she feels that her work has kept her active and healthy, she’s now tired, so hopes she can get a market stall so she can sit in one place.

Both stories here emphasise the reliance on family support in old age and the burden this places on individuals, especially when it breaks down. The head of physiotherapy at the local government hospital is all too familiar with such stories. He feels that informal workers contribute significantly to the Ugandan economy but are neglected by public services. He hopes for further investment in prevention and promotion to alleviate the impact of physical work on people’s bodies over time, seeking health protection for informal workers and advising them on how they can better protect themselves.

As part of the ASSA project, we plan to make a short film on the impact of physical work on older people’s health in Lusozi, that he can use to support further research, advocacy and community sensitisation to this end.