Daniel Miller is the author of The Comfort of People, a new book featuring the stories of hospice patients and their use of social media. Here he explains how the book took shape.
"Each story brings out different issues: one is concerned with the negative impact of rules about confidentiality, another with the nature of a modern English village"
The primary topic of this book is the social universe of the hospice patient. Potentially this might include their family, their friends and their neighbours. But as we know when someone becomes a hospice patient, things can change. Some of those one might expect to rally round fade from view and avoid contact, while other more peripheral figures come to the fore.
One of the key discoveries of this book is that as a patient becomes more house bound this sets up a dilemma that goes to the core of English traditions. Normally people in England prefer to socialise in public areas such as pubs, clubs, societies, or over the garden fence. But to come into the private home is viewed as intrusive and difficult.
Because of this one of the primary reasons for the degree of isolation and loneliness that may be encountered, especially for some older male patients, is not, as you might expect, the decline of community and support in England, but actually the result of precisely the opposite – the continuity of certain traditions. This matters, because perhaps the single most important thing in life for many people are other people, the core relationships they care about. And if this is so important to them, it is something we also need to pay attention to. As Dr. Ros Taylor notes in her preface the focus here shifts from ‘what’ matters to patients, towards ‘who’ matters for patients.
Most of this book is not written by myself as the author, an anthropologist working at University College London (UCL), but is the direct reportage of our interviews with patients. The intention is to give readers a more immediate sense of how patients understand their situation. Each of the eighteen stories brings out different issues: one is concerned with the negative impact of rules about confidentiality, another with the nature of a modern English village, a third with the importance of a single close friend to an elderly patient. Gradually we become aware of the sheer diversity in the social circumstance of these patients, who come mainly from a rural setting.
The original focus of these interviews was to explore a more practical issue – the use of different media. We are living through a time of unprecedented change in the technologies of communication. How will this impact upon patients’ ability to keep in touch with others? How does a skype call or a WhatsApp exchange compare to seeing someone face to face? Will social media represent a significant change in the lives of hospice patients? And if so, with positive or with negative effects?
As this book shows, the answers are complex and sometimes contradictory, but the evidence is very clear that new communication media are of immense importance, not just in changing the way people connect with the hospice, but as the means by which they connect with everyone.
This book came out of a more practical exercise, a request by a hospice for advice as to how the hospice itself should respond to these changes in new media. At the end of the book an attempt is made to provide an answer to that question, with several practical suggestions for how hospice staff might take up both the new opportunities and respond to the new threats posed by new communication technologies. As a final encouragement to read the book, you may note that all the royalties are being given to Hospice UK.
To read an extract from the book visit Facebook and facing death
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