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.

Since the beginning of my fieldwork, I’ve been asking people about death and the meaning of life. I thought that on reaching old age, people would accept death more readily and that consciousness (or fear) of death would drive them to philosophical questions about life propose, finitude and legacy. Generally they do experience death more closely: their parents are sick or died a few years ago and so do some of their close friends. But besides their grief, death is not a big issue for them. Religion and spiritual beliefs seem to bring enough comfort and resilience to deal with the end of life and life after death. “I know I am mortal”, “Life doesn’t end here” and “It is a natural thing” are expressions they use when I ask them about death.

In The Philosophy of Ageing, Time and Finitude, Baars (1) argues that consciousness of death is not the only trigger that puts life in perspective. The author highlights that we frequently face extreme situations that make us abandon idols and ideals of what life should be. At those moments, there is just real life and a balance of the past that would give the present and future some meaning. To my informants, dependence became this trigger. Many of them see the loss of autonomy as a first death and some of them wish they could die at the exact moment when they become dependent on others.

On the one hand, they are not sure if their children will take care of them in later years. When I ask them, they answer that they don’t know or they don’t think so or they don’t expect them to. “Things are different now”, they explain. On the other hand, they don’t want to become a burden especially for their kids. Martha, for example, a 63 year-old woman who takes care of her children, had made up her mind. She already told her kids that if she had Alzheimers she would prefer to go to a clinic. “They don’t deserve this burden”, she said.

Like Martha, Linda is not afraid of death, but what comes “before death” is a different matter. She prefers to try to remain healthy as long as she can. In her 70s, she still runs marathons and takes special care of her diet and sleep. Regarding her kids, she believes this is her obligation “people who don’t take care of their health don’t deserve to stay alive”.

There are also people that just don’t want to lose the right to make decisions about their own lives. Maria for example is a very independent 67 year-old woman. She calls herself “bossy” when she talks about family decisions. “I can’t stand the idea that at a certain point in my life my children will think they can tell me what I can or can’t do”, she said.

If dependence is the new trigger for the consciousness of finitude, a good question to ask would be: what gives life a sense of purpose then? My first answer would be legacy. But what I found is that the past is not enough to fulfil life before dependence comes. As my colleague Pauline, who is conducting her fieldwork in Ireland, found out, my informants are more concerned with what they are doing today. They want to feel useful by learning new stuff, engaging with new projects, volunteering or filling their time with whatever they can. Their autonomy is their legacy and that puts life in perspective.

Reference:

Baars, Jan. Philosophy of Aging, Time, and Finitude. In: Thomas R. Cole, Ruth E. Ray and Robert Kastenbaum (eds), A Guide to Humanistic Studies in Aging: What Does it Mean to Grow Old?, The Johns Hopkins University Press, Baltimore, Maryland, 2010