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The Lancet Commission on the Value of Dying

DanielMiller7 February 2020

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.

“Not working? I would die…!”: on Peruvian migrants and their prospects on an acceptable retirement in Chile

Alfonso ManuelOtaegui30 January 2020

CC BY-NC Alfonso Otaegui

The pension system in Chile (Administradoras de Fondos de Pensiones, or AFP) is a capitalisation system run by private sector pension funds. Workers have to contribute a fixed percentage of their salary towards a fund that is used by a private AFP, which invests it and makes it grow (depending on the risks the worker is willing to take). Once the worker retires, this amount of money – which varies based on the worker’s contributions – is used to provide him or her with a very low salary. This system has been severely criticised, especially in the last few years, and its reform has been one of the main demands in the ongoing protests in Chile.

I interviewed retired Chilean older adults who agree that the pension they receive is insufficient for proper living. Some of them continue working part-time –or even full-time– after retirement. There are some retirees however, who do not have the opportunity to do this due to age-related frailties, or a lack of job offers. All of these Chilean retirees, whether still working or not, claimed to have always been “very organised” when it comes to managing their money (especially the ones who are no longer working). By ‘being organised’, they mean that they have either been putting money aside their whole working life or, more likely, that they bought an apartment or a house whose mortgage they were able to pay in full before retirement. The result of this cautious strategy is the same: once retired they do not have to pay rent; therefore, they are more likely to survive on their pensions.

This long-term strategy is actually feasible for those who have had a stable job for over 30 years, but what happens to migrants who might have been living in Chile for a long time, albeit not for enough time to have built up a savings pot? Even though these migrants have been working continuously, it is not unusual for them to change jobs during the first years in their new country, until they find one that suits their education and expectations.

During my fieldwork in Santiago, I met and talked to middle and upper middle class Peruvian migrants – workers who settled in Chile in the late 1980s and early 1990s. Although they have been living in the country for over 20 or 30 years and working continuously, they would not be able to live off their pensions and maintain the quality of life they have got used to.

In addition, some of them, during those long years of work, had not saved money for the long-term or bought an apartment, investing all their money into their children instead. Francisco, a 57 year old janitor, has been sending all his extra money to his children in Peru to pay for their studies. Martín, a 59 year old entrepreneur, invested all his money in the top educational institutions for his children here in Chile. Neither of them has an apartment of their own – they still rent. At the same time, neither of these two men regret their decisions: their family was a priority over their own future.

What struck me the most, however, is that when asked about their pensions, my informants answered that they were aware they wouldn’t receive an amount that they could realistically live on, something that did not come as a surprise to them. In a way, they already knew that long ago, when they moved to this country in their late thirties, without enough time ahead to build up a good retirement fund. Furthermore, their response went beyond the material aspect of retirement, revealing their attitude towards life. Almost none of the Peruvian migrants in this age range with whom I discussed this matter could picture themselves as retired. “Not working? I would die..!” replied assertively Ismael, a 65 year old engineer. This is almost the same response I got from Estela, a 65 year old nanny, who recently retired but still works three 8-10 hour shifts a week.

What does this almost stoic acknowledgement of the inability to retire tell us about these migrants’ perspective on life? My colleague Marilia Duque, who conducted fieldwork in a suburb in São Paulo, observed that for the people she spoke to, death was not a big issue. Rather, those older adults rather feared the loss of autonomy in later years: dependence was the new death. “Do nothing? I would go mad…!”, said another Peruvian migrant. This common trope hints at something deeper than merely not being able to afford a good retirement. It tells us that for these Peruvian hardworking migrants, inaction is the new death.