Cover Page

The Comfort of People

Daniel Miller



I am grateful to all the anonymous informants for this study, especially those terminal patients who agreed to give their precious time to these discussions. I am indebted to ‘Maria’, who jointly conducted with me all the hospice interviews and who commented on this manuscript. Also thanks to ‘Dr Helena’ who, much to my surprise, since I considered myself quite unsuited to the task, suggested that I should conduct research with hospice patients. Also thanks to the various nurses, here generalized as ‘Justine’. I am also very grateful to Dr Ros Taylor MBE, Clinical Director of Hospice UK, who agreed to write a foreword to the volume.

I would like to thank Amelia Hassoun and Sabrina Miller who worked as interns, and especially Ciara Green, my co-researcher on the village ethnographic study who also undertook much of the transcribing of these interviews. I am grateful to those who have read the manuscript and made editorial comments: Amelia Hassoun, Rickie Burman, Laura Haapio-Kirk and Xinyuan Wang. The project forms one part of the Why We Post project and I am grateful for the support of the whole team and the funding from the European Research Council grant ERC-2011-AdG-295486 Socnet. Parts of the conclusion have been previously published as ‘The Tragic Dénouement of English Sociality’, Cultural Anthropology 30(2): 336–57.


I have learnt over the years, as a hospice physician that, as life ebbs, connections become ever more important. Connections to family, friends, enemies and community. It’s almost as if the energy to face loss is gathered from others.

These connections are hidden from health care, are often surprising and yet are such a valuable resource if only they are noticed. Doctors look at body parts, occasionally at the whole person, but almost never at the sustaining systems that surround people. Yet these systems can often be the clue to maintaining resilience or understanding distress in the face of advancing illness.

The Comfort of People reveals, in both technicolour and shades of grey, the ordinariness, the drama, the simplicity and the complexity of networks as people live out lives in the shadow of a serious diagnosis. These narratives of hospice patients, observed by an anthropologist, reveal the many ways in which people express themselves, choosing different media for different relationships: media such as Facebook to broadcast bulletins when close to death or Skype to connect with grandchildren around the world. The choice of communication channel seems to have meaning in terms of privacy, asymmetry, brevity and publicity. But ultimately these stories show that choices about communication and connection are pivotal to experiencing closure, and we should respect and understand the value and power of each – face to face, text, phone or Facebook.

Many of the findings were surprising to me: the reticence to invite people into their house, the ‘Englishness’ that Miller describes, contributes to a profound sense of isolation, even in a small village. People seem happier to connect in public spaces, or sometimes not at all. Miller observes that when the social relations of older people ‘become attenuated, they cultivate their plants instead’. The garden seems a huge source of comfort and distraction.

The issue of ‘confidentiality’ is intriguing and highlighted in Marilyn’s experience in story 3. Patients expect their vital medical information to be shared with all those who need to know – yet the ‘cult’ of confidentiality, as Professor Miller sees it, causes harm and frustration. It is quite remarkable that even as a patient is broadcasting details of her illness in a blog to the public, the doctor won’t email her scan result to a neighbouring hospital. The ‘devotion’ to fax machines has to change!

These stories need to be read by all those working with dying people. ‘It is only in the process of dying that she has resolved one of her main conundrums of living: how best to use time.’ This insight from Miller jumped out at me.

We will be better healers if we realize the power, complexity and comfort of those in the patient’s social universe. We are learning to ask ‘What matters to you?’. These stories remind us to ask ‘Who matters to you?’.

Dr Ros Taylor MB, BChir, DL, MBE

Clinical Director, Hospice UK


This is a book about people’s lives, not their deaths. It is a book about hospice patients, rather than the hospice. The primary aim is to provide a sense of the social connections of individuals who are diagnosed with a terminal, or long-term, illness that has led them to become patients of a hospice. The book explores the comfort of people, but also the wider consequences of the presence or absence of others. A secondary theme is the impact of contemporary media because this book arose from an academic project, studying the use of media. Many of these social contacts are routinely maintained at a distance. Because I am an anthropologist and understand what I observe in terms of norms and expectations, this is thirdly a book about Englishness.

The why and the how

I had no intention of carrying out research with hospice patients. At the time, I was in receipt of an advanced European Research Council grant for a five-year study of the use and consequences of social media around the world (Why We Post). This included an 18-month study of people living in a village north of London.1 It was during my fieldwork that I was approached by Dr Helena, the hospice director, to conduct research within the hospice and make some applied recommendations, which are found at the end of this volume.

What I had not appreciated, prior to this research, was how perfectly Dr Helena embodied the ethos and spirit of the hospice movement itself. I recall watching her talk at periodic hospice meetings for potential patients and their carers. These meeting are critical for reframing the hospice experience. After all, the hospice is defined as a place you become associated with when you have received a terminal diagnosis. Soon after we began research, I bumped into an elderly man who referred to the hospice as the ‘knacker’s yard,’ which is an old English expression for the profession that turned dead horses into substances such as glue and fertilizer − hardly attractive connotations.

What Helena managed to do within minutes was to pirouette a 180-degree turn from downbeat to upbeat; she managed to make the hospice sound like fun. The core achievement of the hospice movement has been to shift people away from thinking about the period before death as the end of life and instead more as a new stage of life with its associated possibilities. If we imagine that it is a good thing to ‘invest’ in our children and their future, this might imply, by contrast, that once we know that someone is dying, they are no longer worth ‘investing in’. Helena countered this by noting that once you have been diagnosed as terminal, you are actually entering an important stage in life, with all the possibilities that being alive brings: perhaps the time to have an exhibition of one’s art, or marry the person you have grown increasingly fond of. This is a final opportunity to do something positive with life and we should seize it while we can.

The hospice had extensive medical back-up, such as specialist pain relief and physiotherapy, but was mainly there to give support and confidence back to its patients and their families. Not a place to die in so much as an institution that helped people to remain for as long as possible in their own homes − to live. As director of an English hospice, Helena also knew exactly how to transmit this idea and engage her audience. Her talk was very funny, using humour, banter and warmth to convey these messages. In many ways, the hospice is actually quite keen not to be overly associated with the word ‘terminal’. Several of these informants had been patients for many years and some are likely to survive their cancer and return to a normal life and even a normal lifespan. The hospice is about promoting, not crushing, hope. It also deals with illnesses that people may not recover from but are gradual in their impact, representing sometimes decades of frailty that requires assistance.

Although the word ‘hospice’ was originally associated with Christian institutions for looking after the sick and dying, developed from medieval times, the modern hospice movement with which this book is concerned was founded by Dame Cicely Saunders (e.g. Saunders 2006) in the 1950s as a movement dedicated to people with terminal conditions. 2017 will celebrate the fiftieth anniversary of the establishment of the first purpose-built hospice in 1967. Subsequently, the modern hospice movement has become established in many countries around the world. Apart from being involved with medical research into issues such as pain control, the hospice movement advocated a move towards palliative care based on this more holistic ideal of end of life, something that would be much harder to achieve within the general hospital context. At least in Britain most people do prefer to stay in their own homes. Consequently, most hospice care consists of nurses going out to patient’s homes, complemented by courses dealing with issues such as anxiety and physiotherapy, available at the hospice itself. Since so much of the work is based on outreach, the issue of communication is central to effective practice. This was the reason that Helena asked me to investigate the consequences of new media and its potential for the future of the hospice.

As it happens, I had felt frustrated for quite some time that my academic work had never had a directly applied outcome. My academic reputation was more as a theorist of material culture. I had managed to obtain grants for what could be regarded as strictly academic work, but all my previous attempts to raise money for carrying out more applied work had failed. Apparently, I am just not qualified to be useful, outside of education. But now I had funding for a five-year project and I figured no one would notice if I skived off and did a bit of applied work on the side. Working for the hospice became a kind of private vice that I wasn’t really ‘supposed’ to have. Since this project was done in the interstices of my main fieldwork, it was quite stretched. The first interview took place in April 2012 and the last in December 2014. I had no intention of writing a book; the aim was to provide the hospice with practical advice which appears at the end of this volume.

It was obvious that, given my lack of experience with terminal patients, I should never interview a hospice patient on my own. We therefore agreed that all research would be carried out alongside a senior hospice professional, Maria, who had many responsibilities, ranging from bereavement counselling to organizing many of the courses that helped both patients and carers. Maria was extremely successful at her job, but was seeking an opportunity to carry out a more reflective, academic engagement to complement her other work. The interviews also gave her a chance to re-engage with some of her professional and academic training that had been neglected.

Maria was the perfect partner for this work. For one thing she has patience. She would spend ages going through consent forms, making very clear the nature of patients’ involvement and that they could stop at any time, or retract their participation, and so on. I would have done this too but, to be honest, at about five times her speed. Alongside Helena, Maria showed me that just because someone is dying doesn’t mean that the right tone is downbeat. Quite the contrary, patients are desperate to escape from being defined only by the fact that they are terminal and are often delighted to find that we had come to get their advice about something as future-orientated as new media. There were very few interviews that didn’t include some jokes, sometimes quite rude ones, and laughter. Once I realized that, in almost every case, the patients seemed to have enjoyed themselves and were happy for us to return, I felt more confident that it was not inappropriate to engage in the informal and jokey upbeat style which, in any case, is probably the only way I know to carry out research. I don’t really do downbeat.

As an experienced hospice professional, Maria was also expert at judging when the time was right to remind patients that perhaps they were feeling tired and would prefer us to return on another day. Maria also helped me get to know some of the hospice nurses and subsequently arranged for me to interview twenty of the staff, in this case without her being present. There were fifty patients involved in this research, most of whom had received terminal diagnoses and who have subsequently died, though some are now in remission. The dominant, but by no means the only, reason people were associated with the hospice was cancer.

Helena’s brief was for us to investigate the potential of new media, which fitted with my larger ERC project. But as an anthropologist I assumed that you can only understand new media if you investigate people’s relationships to all media. Furthermore, because this is all social communication, it makes no sense outside the context of people’s wider social connections, including face to face. We didn’t use any formal questionnaire, but the general pattern, for both Maria and myself, was at some time during our conversation to try and cover all the different ways people might communicate. Maria would also use her prior training in systemic family therapy to draft maps (genograms − see McGoldrick and Gerson 1985) of the entirety of an individual’s social connections as these emerged from the interviews. Since this was intended as an applied project for the hospice, and not as an academic project, I did not initially publish any findings. Instead, I sent the report directly to interested hospice staff and posted it on my personal page of my department website (UCL Anthropology).

This book is clearly a kind of a praise poem to the hospice. I remain astonished that patients who knew they were dying and might have been expected to be resentful or angry never expressed anything but appreciation for the hospice itself, especially when one considers their initial reluctance to even be associated with the hospice, thereby explicitly acknowledging a terminal condition. Some patients, such as Chrissie (5), had still not been able to bring themselves to actually visit the hospice itself. It is to be hoped that this book’s contents will also give readers some appreciation of the world of hospice nurses, here all referred to as ‘Justine’.

The National Health Service (NHS) has a more ambivalent presence in this volume as, while the hospice often received praise, this was in contrast to the frustrations or problems associated with the wider health service. This volume includes one unequivocal critique which is that the NHS’s obsessive concern with confidentiality is a cause of harm, which forms the substance of Marilyn’s story (3).2 In fact, most patients held the National Health Service in considerable esteem, and generally saw the defects either in terms of underfunding or of the de-humanizing that stems from huge-scale and necessary bureaucracy: for example, the lack of personal consideration given to former NHS staff, such as Veronica (2), when they have themselves become ill. It was salutary to compare my findings with those of an anthropologist working on dying in the United States. There, every story was dominated by issues of cost, which helped me appreciate that, thanks to the combination of a free hospice and free NHS, expense was almost entirely absent as a consideration in our interviews.

Ordinary death

One advantage of working through the hospice is that we had no say in the selection of patients other than a request that they should be from rural areas in order to match my wider research topic. Since everyone dies, there is nothing special about the people who appear in this volume. It is not just that they are ordinary people; this book focuses on the way in which dying itself is ordinary. Carrying out this research suggested that for most people dying is not an especially profound experience. I suspect we all have fantasies that if only we knew we were dying, then we would actually get round to having that special experience, devote ourselves to that welfare project, or write that piece which we always meant to do. But, generally, this is not what people subsequently do. If you want to do something special, then my advice is don’t wait until you are diagnosed as terminal.

Even though we often talked about patients’ lives as a whole, the tone was neither especially regretful, nor self-congratulatory, nor evaluative. Only two patients ever suggested that they had, or desired to have, some deeper conversations as a result of acknowledging that they were terminal. Most of the discussion was about everyday living. The substance was often pragmatic and the attitude usually phlegmatic. In any case, our choice of topic was more likely to lead to a conversation about social embarrassment, about people, including themselves, being unsure as to how one should behave in relation to friends and family, given these new circumstances, or conversation focused on trying to explain which relationships had been sustained and which had fallen away.

But could there be something profound about this evidence for ordinary death? The fact that people desire to maintain life, as it has been lived, does in and of itself represent a commitment. After all, why would, or why should, people repudiate what they are and have been, and how exactly would that help them at this point? By remaining true to what they have always been, people in some measure give value to their life as it has actually been lived. So this book attempts to pay respect to that which these patients understood themselves to be, mostly a modest engagement with life, which they simply wished to maintain while they still could. This is not a book for existentialists or others looking for meaning in death other than the very obvious lesson, which is to value life while we have it.


There is a concluding section to this book which deals with a single finding that seemed to be the most surprising result of this research, requiring deeper examination. The conclusion investigates why some people with a terminal diagnosis find that, despite living in villages, they experience a degree of loneliness and isolation which seems to have arisen because of quite specific English sensibilities. This finding was not the result of any conscious plan or prior hypothesis. It just transpired that inadvertently we had hit upon the ideal way to study such a problem. I simply cannot imagine interviewing people with a terminal diagnosis directly about topics such as isolation and loneliness; it would be an extremely cruel confrontation. This book may give the impression that, because of the editing of these transcripts, we were confronting people with precisely this issue, but in fact we were careful not to do so. Instead, it was our method of systematically discussing each different medium in turn that allowed issues of loneliness to emerge without this becoming apparent. We were actually more concerned to keep the interviews relatively light and make sure people were comfortable and enjoyed the experience. Some people did, of their own volition, talk about feeling lonely and isolated, but that was simply because we presented an opportunity for them to discuss those feelings, which we certainly didn’t want to foreclose.

The academic term for what we were studying is sociality. Our topic was the media, but these were always social media. Sociality is partly a description of people’s social lives but, as a more abstract and academic term, it implies questions about why people do or do not socialize in particular ways. We need to also explain the patterns of socializing we uncover. So although every chapter appears to be a kind of vignette about an individual, these build towards a certain sense of typicality that needs to be accounted for, in some cases by asking questions about the nature of English sociality, in other cases considering the way new media have changed our social universe.

It is unlikely that we will understand the social relations of a person with a terminal condition simply by focusing on this particular stage in their lives. Mostly the reasons they have an extensive social network, or that their friendships derive mainly from their place of work, were already well established. Indeed, you will read more than one case where a patient argues that it was their parents or grandparents who set the pattern, for example regarding their particular concerns over respectability. Much of the content is also about individuals’ self-characterization as self-sufficient and preferring their own company, or having a strong sense of either family or friendship. We shall see that it is a great mistake to assume that people who live in villages thereby live in communities. Some certainly do, but, as my other work shows, the proportion of contemporary villagers who are active in the communal side of village life is often surprisingly small. Despite the fact that people with a terminal diagnosis might be expected to develop or deepen religious sensibilities, there was very little mention made of religion.

Why does the conclusion focus specifically upon the nature of Englishness? Again this was inadvertent. For a period of eighteen months, I was carrying out research in a dual-village site I call The Glades for a book that has since been published called Social Media in an English Village. For much of this time, I spent one day a week working with these hospice patients and, in order to justify this, requested that where possible they come from villages similar to The Glades. All my previous ethnographic experience in England had been in London, and I had chosen The Glades for reasons of logistics. I had no idea that I would encounter a place where less than 2 per cent of the population were from ethnic minority backgrounds, as confirmed by local medical statistics. The hospice patients came from a similar population, relatively affluent, and almost entirely born in England. None of the people who appear in this book are migrants or descended from recent migrants, and none are black or Asian. I therefore decided to take advantage of this opportunity to research, amongst other things, the nature of this home-counties, regional, non-cosmopolitan ‘Englishness’, something that is now quite rare even amongst the English. This is the topic that forms the book’s conclusion.

The media

If the end point of this research is an understanding of the social lives of patients, the means to this end was a study of the impact of the media that have become the primary ways people are in contact with each other. From the beginning, that included discussion of face-to-face contact. As an anthropologist, I cannot regard face-to-face communication as unmediated. It comes with a whole slew of cultural rules about what is and is not appropriate behaviour. As will become clear, it is often conversation via phone, webcam, or texting that is more intimate than conventional face-to-face encounters. So, in reading this book, think of ‘face to face’ as one more type of media, rather than merely an absence of media.

There is a huge amount of material in this book about how people use different media. The evidence shows clearly why it is not possible to simply separate out a thing called ‘social relationships’ as opposed to the media through which they are increasingly practised. The mere fact that some of the patients have such close relationships with friends and relatives in places as far away as Australia demonstrates the way inexpensive new media have reduced geographical obstacles to intimacy. Matt (18) used to tell me that during chemotherapy he simply couldn’t sleep, and he really needed the company of people who were awake in the middle of the night on the other side of the planet, which was now easy to find. On the one hand, several elderly patients suggested that the one compensation for dying was that people would stop trying to force them to use new-fangled media such as computers, while, by contrast, Jeanette and Bernard (14) happily saw the potential of new media for purposes such as appreciating classical music.

The evidence also warns against conservatism. This book shows how it was actually the traditional telephone that was in some ways extremely un-English because it was exceptionally intrusive. With landlines, we don’t know in advance when would be a convenient time to speak. It is much more English to be able to text or WhatsApp in advance to minimize intrusion. So there are many points that will emerge about the media. But this does not form the conclusion of this book simply because that was the task of the recently published Social Media in an English Village. But it may be helpful in reading what follows to appreciate the perspective that I brought to the encounter, which is encompassed by the term ‘polymedia’.

Polymedia is a word coined by Mirca Madianou and myself (Madianou and Miller 2012a, 2012b) as the conclusion to a research project we previously conducted with Filipina women living in England, who were parenting their left-behind children in the Philippines through new media. The book tells us as much about being a mother as about the media. I prefer not to invent words, but there was simply no other way to make our point. Most people will ask questions about each individual media platform, such as the landline or Facebook, and mainly about whether we think these are good or bad. But, reading these stories, one can see why such questions don’t work. People have different ways of using each platform and different views as to their consequences. Instead, these stories suggest that we need a more holistic perspective. We can only understand people’s relationship to something like WhatsApp when we set this against all the other media that these patients use, such as voice calls or webcam, and try and understand why they have email friends as opposed to phone friends.

Polymedia provides this holistic sense of multiple media which are typically employed in a complementary fashion. Elizabeth (13) uses Facebook to tell many people her news, while Celia (8) uses a group email for the same purpose. Polymedia is also used as a means for controlling relationships. An obvious example is Emma (10), who uses texting as the master medium for organizing all her relationships. Helen (15) makes the point that sometimes the aim of this control is simply to keep everyone at a distance when you need time and space to face things such as pain or depression on your own.

Such choices always have additional considerations, such as questions about using the ‘right’ media for the occasion, or worries about politeness and avoiding offence. The availability of polymedia means that we have an array of media choices; as a consequence, we will be judged as to which media we employ. This has become a moral issue in a manner that was not true when it was assumed people chose their media for reasons of cost or access. It is also possible to let certain media stand out as special, and for many elderly patients the time and effort of handwriting has become treasured, partly because it has also become rare. So, ultimately, polymedia allows us to approach media not in themselves but as an integral part of what makes social relationships possible, fraught, successful, intermittent, and often comforting.

There is no such thing as a pure social or human relationship − they are always mediated and material. Forget the media and return to the earlier discussion of Englishness. There are always issues of etiquette, rules about what can or cannot be said, spatial contexts such as being inside the house, or on the street, or in the hospice, that have a huge influence upon each conversation and relationship. To give just one example, none of this research would have been possible and much of the content would have been different without sensitivity to the role of humour. The first paragraph of this book confronts us with an example of particularly black humour from Sarah. In every interview, humour had a role in helping people to express and deal with their feelings regarding their illness. Humour is a medium.

Patients often made very clear that they also felt a relationship to the medium itself. We like or hate Facebook, feel self-conscious or at ease on the phone. Emma (10) certainly has a powerful relationship to her iPad, as did others, not included here, to their Kindle or to Radio 4. Of huge importance are people’s feelings about their home and why they want to stay there, despite being ill. Another important relationship may be to their pet. We will encounter Bernard’s (14) intense relationship to the repairing of clarinets, which is clearly enormously enriching. The conclusion reached by my previous book, The Comfort of Things (Miller 2008), was that people gain most from a few deep and sustained relationships, which can indeed be to things, or homes, or pets, or media and not just to other people. By contrast, dispersed shallower sets of relationships seem less fulfilling in the longer term, whether these are with people or things. What I did not find in previous research or in the work described here is that people’s relationship to things, or to the media, was at the expense of the depth of their relationships to other people, something that is otherwise commonly assumed to be the case.

How I wrote this book

Even though much of the content of this volume is presented as interview transcripts within quotation marks, not every word is as it was spoken. There are several grounds for editing the interviews. Speech is often messy and unclear and I have freely added or left words out where I feel this clarifies the evidently intended meaning of what was said. I have not used ellipsis to indicate the many sections that have been edited out. I have reordered and collated sections, for example when a person spoke about the same topic at different stages of an interview. I have not included questions that we asked. Instead, I have sometimes added a few words to make clear what the patient was referring back to in their discussion.

The main changes that have been made to the text are, however, the results of a different concern, which is to ensure the anonymity promised to all informants, apart from in the final story of Matt. When something is pertinent to the topic of the discussion, I have tried not to change it, but otherwise many details have been altered in the interests of disguising the speaker. If the fact that a person was a management consultant seemed highly relevant, then I have felt it important to keep that information unchanged. But if they just happen to have been a baker without any wider implications, I may well have changed them into a butcher. Many other details will have been changed, such as the gender of a relative, or their place of origin. The intention is that no one should be able to recognize an individual from the account given here. The book is not, however, a work of fiction since everything it contains is designed to convey that which was actually observed or said.

For the same reason, although the stories appear to represent distinct individuals, in many cases they include material from different patients. Again, I have tried to think whether the result distorts the implications of that content. But quite often when people are talking about something specific, such as the use of a webcam or the effect of working in the community, it seemed reasonable to combine interesting observations from two different people. All names of persons and places are changed. Helena, Justine and Maria are also pseudonyms.

My attitude to ethics is very simple. I certainly make sure I am aware of formal ethical guidelines but, ultimately, I follow a single consistent rule, which is that one’s research should never result in harm to people. Every ethnographic study is different, and the anthropologist should work hard to be sensitive to the sensibilities of their informants, rather than sticking to preor-dained ethical rules. I have especially concentrated on anonymity where there is content that might be disparaging, or in some other way cause hurt or harm. In such cases, if this required drastic changes, such as altering the gender of the person concerned, then I would have done that. But most of the content is innocuous and I do not see it representing a potential cause of harm. Rather, I hope it will have value for the purpose of education and practical improvements to hospice care, as was indicated to our informants as the aim of our research. This means one should be cautious in altering such stories. For example, censoring negative content alone would obviously lead to an overall misrepresentation of the lives of people with terminal diagnoses, which would diminish the book’s educational potential. One of the more surprising lessons from this book, summarized in the third story, is that an over-concern for confidentiality has itself become one of the primary causes of harm to patients.