The end of life and the family: hospice patients’ views on dying as relational

The end of life is a highly emotive and critical period in the life course and families often play a central role during this time. Despite significant sociological work on dying as a relational experience, there has been little exploration of the significance of contemporary family structures and relations. In this article, drawing on the accounts of twenty hospice in‐patients, we explore how the end of life (in this case within an in‐patient unit) is mediated by family dynamics and expectations. Participants’ accounts reveal a range of interpersonal experiences, including: pressures and strains on families and patients; differentiation in family responses to and involvement in the dying process; and tensions between individual and family preferences/desires. We argue that family dynamics strongly influence individual experiences near death and that the focus on individual preferences and the management of disease in palliative care contexts must be augmented with sophisticated and nuanced understandings of the family context. We suggest that sociological conceptual explanations of shifts in social and family life, such as individualisation and ontological security, may also help us better understand the ways families approach and respond to the dying process.     

Controlling food,controlling relationships: exploring the meanings and dynamics of family food practices through the diary‐interview approach

Potential merits of a social practice perspective for examining the meanings and dynamics of family food include moving beyond individual behaviour, and exploring how practices emerge, develop and change. However, researchers have struggled to encourage reflection on mundane practices, and how to understand associated meanings. Drawing on a study of families in South Wales, this article reflects on the value of the diary‐interview approach in addressing these methodological challenges, and aims to explore and understand the dynamics of control across family contexts. Contemporary practice theories distinguish between practices as ‘performances’ and practices as ‘entities’ and the diary‐interview method facilitated an examination of these dimensions. Detailed accounts of daily ‘performances’ (through diaries), alongside reflection on underlying contexts and ‘entities’ (through interviews), illustrated the entanglement of control, practices and context. The article adds further complexity to the concept of practice ‘bundles’ which facilitated an understanding of how food was interrelated with other practices – across family contexts and across generations. Sociological approaches with a practices perspective at the core, offer potential for developing public health interventions by acknowledging: the relational meaning of food; the embeddedness of food within everyday practices; and the need to consider interventions across a range of policy areas.     

Expanded definitions of the ‘good death’? Race,ethnicity and medical aid in dying

The range of end‐of‐life options is expanding across North America. Specifically, medical aid in dying (AID), or the process by which a patient with a terminal illness may request medical assistance with hastening death, has recently become legal in eight jurisdictions in the United States and all of Canada. Debates about AID often rely on cultural constructions that define some deaths as ‘good’ and others as ‘bad’. While research has found commonalities in how patients, family members and health care providers define good and bad deaths, these constructions likely vary across social groups. Because of this, the extent to which AID is seen as a route to the good death also likely varies across social groups. In this article, we analyse qualitative data from six focus groups (n = 39) across three racial and ethnic groups: African American, Latino and white Californians, just after a medical AID law was passed. We find that definitions of the ‘good death’ are nuanced within and between groups, suggesting that different groups evaluate medical AID in part through complex ideas about dying. These findings further conversations about racial and ethnic differences in choices about end‐of‐life options.     

A day in the life of a Ménière's patient: understanding the lived experiences and mental health impacts of Ménière's disease

Concepts of social practice are increasingly being used to understand experiences of everyday life, particularly in relation to consumption and healthy lifestyles. This article builds on this in the context of lives disrupted and reshaped by chronic illness. It uses social practice theory to examine the lived experiences of individuals with Ménière's disease; a long‐term progressive vestibular disorder, defined by episodes of severe and debilitating vertigo, aural fullness, tinnitus and sensorineural hearing loss. Drawing on the findings of 20 in‐depth narrative interviews with Ménière's patients, and eight spousal/partner interviews, we explore the impacts of the condition on sensory, temporal, spatial and social dimensions of the body. In doing so, we highlight the intensely embodied sensory and emotional work required to maintain connections between the ‘competences’, ‘materials’ and ‘meanings’ that constitute and sustain the performance of both mundane and meaningful social practices over time. As connections between these elements of social practice are disrupted during more active phases of the condition, affected individuals may be defected from old practices and recruited to new ones, often requiring both time and social support to find meaning or pleasure in these alternative ways of being in the world.     

Dressing disrupted: negotiating care through the materiality of dress in the context of dementia

This paper explores how the materiality of dress mediates and shapes practices of care in the context of dementia. Earlier research called for an approach to conceptualising care that recognised the role played by everyday artefacts. We extend this to a consideration of dress and dressing the body in relation to people with dementia that involves the direct manipulation of material objects, as well as the materiality of bodies. The paper draws on an ESRC funded study Dementia and Dress, which examined experiences of dress for people with dementia, families and care‐workers using ethnographic and qualitative methods. Our analysis explores the process of dressing the body, the physicality of guiding and manipulating bodies into clothing, dealing with fabrics and bodies which ‘act back’ and are resistant to the process of dressing. We consider how the materiality of clothing can constrain or enable practices of care, exploring tensions between garments that support ease of dressing and those that sustain identity. Examining negotiations around dress also reveals tensions between competing ‘logics’ of care (Mol 2008 ).     

Dying with motor neurone disease,what can we learn from family caregivers?

Background Increasingly, people with neurodegenerative illness are cared for at home until close to death. Yet, discussing the reality of dying remains a social taboo. Objective To examine the ways, family caregivers of people living with motor neurone disease (MND) experienced the dying of their relative and to identify how health practitioners can better prepare families for end‐of‐life care. Design Secondary analysis was undertaken on data sets generated from two longitudinal qualitative studies employing similar data collection and analysis methods. Combining data sets increased participant numbers in a low incidence disease group. Setting and participants Primary studies were undertaken with family caregivers in England and Australia. Interview and observational data were collected mostly in home. Participants who discussed dying and death formed the sample for secondary analysis. Results Combined data revealed four major themes: planning for end of life, unexpected dying, dignity in the dying body and positive end to MND. Despite short survival predictions, discussions among family members about dying were often sporadic and linked to loss of hope. Effective planning for death assisted caregivers to manage the final degenerative processes of dying. When plans were not effectively communicated or enacted, capacity to preserve personhood was reduced. Discussion and Conclusion Returning death and dying to social discourse will raise the level of community awareness and normalize conversations about end‐of‐life care. Strategies for on‐going, effective communication that facilitates advance care planning among patients, their families and practitioners are essential to improve dying and death for people with MND and their family caregivers.     

The place of therapy: between lab and field in the psychoanalytic office

This article builds on recent scholarship in medicine, science and technology illuminating the role of place and materiality in medical work. Drawing on ethnographic observations and qualitative interviews with US psychiatrists, psychologists and clinical social workers, I examine how the therapy office shapes psychoanalytic psychotherapists’ efforts to understand their patients’ unconscious conflicts. The concepts of ‘laboratory’ and ‘field’ frame my discussion of the material set up of the clinical room and the relational practices it fosters. I show that psychoanalytic practitioners try to approximate ‘laboratory conditions’ that insulate patients’ problems from their everyday contexts and ensure a sense of stability. I also demonstrate that these clinicians’ work depends on revealing personal preferences in the therapy room and fostering therapeutic relationships that resemble those in patients’ everyday lives, making the office akin to the ‘field’. The office thus becomes epistemically productive through therapists’ management of the paradoxical relationship between laboratory and field.     

Risk as a relational phenomenon: a cross-cultural analysis of parents’ understandings of child food allergy and risk management

Western culture can be seen as permeated by risk-consciousness. In particular, parents are under scrutiny in their roles as risk managers. In this article, we address parental experiences of children more at risk than other children, children with food allergy, and the management of allergy risk in everyday life. Drawing on a notion of risk as ‘situated’ in local everyday life, we argue that a further exploration of parental understandings of child food allergy risk would benefit from an analysis of studies across different local contexts. In this article, we draw on a secondary qualitative cross-cultural analysis of interview data from several studies of parents in Sweden and Scotland through 2006–2010, which focused on parents’ understandings of the nature of food allergy and the children’s management of the allergy risk. We found some common themes in the different data sets. First, parents depicted food allergy as life-threatening, a ‘death risk’ lurking in the background, more or less constantly present in different everyday situations, amounting to an existential condition in parenting. Second, they talked about food allergy risk as a relational phenomenon, meaning that the risk emerged in the encounter between the young person’s individual competence to manage allergy risk and the understandings of allergy risk in others – thus depending on contexts and interaction between several actors. Finally, the analysis showed that unpredictability and risk in constant flux are the prominent aspects of living with food allergy. We also discussed the ways risk and trust are related, as well as how the involvement of others can be seen as both a risk and a safeguard.     

Dying and Death in Some Roma Communities: Ethical Challenges

The Roma people have specific values, therefore their views and beliefs about illness, dying and death are important to be known for health care providers caring for members of this community. The aim of this qualitative study based on 48 semi-structured interviews with Roma patients and caregivers in communities in two regions of Romania was to examine their selfdescribed behaviors and practices, their experiences and perceptions of illness, dying and death. Five more important themes about the Roma people facing dying and death have been identified: (1) The perception of illness in the community as reason for shame and the isolation that results from this, as well as the tendency for Roma people to take this on in their self image; (2) The importance of the family as the major support for the ill/dying individual, including the social requirement that family gather when someone is ill/dying; (3) The belief that the patient should not be told his/her diagnosis for fear it will harm him/her and that the family should be informed of the diagnosis as the main decision maker regarding medical treatment; (4) The reluctance of the Roma to decide on stopping life prolonging treatment; (5) The view of death as ‘impure’. These results can be useful for health care providers working with members of the Roma community. By paying attention to and respecting the Roma patients’ values, spirituality, and relationship dynamics, the medical staff can provide the most suitable healthcare by respecting the patients’ wishes and expectations.     

Contrasting approaches to ‘doing’ family meals: a qualitative study of how parents frame children’s food preferences

Family meals, as acts of domestic food provisioning, are shaped by the competing influences of household resources, food preferences and broader cultural norms around dietary practices. The place of children’s food tastes in family meal practices is particularly complex. Food tastes stand in a reciprocal relationship with family food practices: being both an influence on and a product of them. This paper explores how parents think about and respond to their children’s food preferences in relation to family meal practices. A qualitative study was conducted with residents of Sandwell, UK. The results presented here are based on the responses of nine key participants and their families. Photo elicitation methods generated participant food photo diaries that were used to inform subsequent interviews. A thematic analysis revealed two contrasting ways of incorporating children’s tastes into family meal routines: (1) ‘what we fancy’ and (2) ‘regulated’. The former entails repeatedly consulting and negotiating with children over what to cook for each meal. It is supported by the practical strategies of multiple and individually modified meals. The latter relies upon parents developing a repertoire of meals that ‘work’ for the family. This repertoire is performed as a series of ‘set meals’ in which any requests for variation are strongly resisted. Our findings add to the small body of literature on household food provisioning and suggest that achieving the idealised ritual of the family meal is underpinned by a range of values and strategies, some of which may run counter to health messages about nutrition.     

Rural residents' perspectives on the rural ‘good death’: a scoping review

The ‘good death’ is one objective of palliative care, with many ‘good death’ viewpoints and research findings reflecting the urban voice. Rural areas are distinct and need special consideration. This scoping review identified and charted current research knowledge on the ‘good’ rural death through the perspectives of rural residents, including rural patients with a life‐limiting illness, to identify evidence and gaps in the literature for future studies. A comprehensive literature search of English language articles (no date filter applied) was conducted in 2016 (2 January to 14 February) using five library databases. Reference lists of included articles, recent issues of eight relevant journals and three grey literature databases were also hand‐searched. Twenty articles (for 17 studies and one systematic review) were identified after a two‐phase screening process by two reviewers, using pre‐determined inclusion criteria. Data from each study were extracted and charted, analysed using a thematic analysis of the included articles' content, and with a quantitative analysis of the scoping review. These papers revealed data collected from rural patients with a life‐limiting illness and family caregivers, rural healthcare providers, the wider rural community, rural community leaders and rural health administrators and policy makers. Rural locations were heterogeneous. Residents from developed and developing countries believe a ‘good death’ is one that is peaceful, free of pain and without suffering; however, this is subjective and priorities are based on personal, cultural, social and religious perspectives. Currently, there is insufficient data to generalise rural residents' perspectives and what it means for them to die well. Given the extreme importance of a ‘good death’, there is a need for further studies to elicit rural patient and family caregiver perspectives.     

Living and dying: responsibility for end‐of‐life care in care homes without on‐site nursing provision ‐ a prospective study

The aim of the study was to describe the expectations and experiences of end‐of‐life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed‐method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill‐health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; ‘talking about dying’ and ‘integrating living and dying’. All participants stated that they were committed to providing end‐of‐life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end‐of‐life care, doubts from care home and primary healthcare staff about their capacity to work together when residents’ trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time.     

Precarity in late life: rethinking dementia as a ‘frailed’ old age

Approaches to ageing that are organised around productivity, success, and active late life have contributed to views of dementia as an unsuccessful, failed or ‘frailed’ old age. Operating through dominant frameworks, socio‐cultural constructs and organisational practices, the ‘frailties’ of the body and mind are often used to mark the boundaries of health and illness in late life, and shape responses accordingly. Our concern is that both the taken for granted and the ‘imagined’ can further marginalise persons who occupy the locations of dementia and disablement. This article analyses the extent to which frailty and dementia are better understood in the context of new forms of insecurity affecting the life course. Drawing on the concept of ‘precarity’, this article shifts debates on the ‘fourth age’ away from age or stage‐based thinking, into a recognition of the shared vulnerability and responsibilities for care. The argument of this article is that ‘precarity’ represents a ‘new form of ageing’, notably as regards its impact on the upper extremes of the life course. The article concludes with a call for a response that is grounded in an acknowledgement of the fragility and limitations which affect human lives, this requiring grounding in inclusive forms of citizenship.     

The ‘window of opportunity’ for death after severe brain injury: family experiences

This article builds on and develops the emerging bioethics literature on the ‘window of opportunity’ for allowing death by withholding or withdrawing treatment. Our findings are drawn from in‐depth interviews with 26 people (from 14 different families) with severely brain injured relatives. These interviews were specifically selected from a larger study on the basis of interviewees’ reports that their relatives would not have wanted to be kept alive in their current condition (e.g. in vegetative or minimally conscious states). Our analysis tracks the decision‐making processes that have led to the situation in which life‐sustaining treatments continue to be delivered to these patients – maintaining them in a state that some families describe as a ‘fate worse than death’. We show how the medico‐legal ‘window of opportunity’ for allowing the patient to die structures family experience and fails to deliver optimal outcomes for patients. We end with some suggestions for change.     

Shedding new light on the (in)compatibility of chronic disease management with everyday life – social practice theory,mobile technologies and the interwoven time‐spaces of teenage life

This article uses a socio‐material approach, social practice theory, to provide new insights into the self‐management of chronic illness. It demonstrates how this theory can bridge arguments about the respective roles of social and individual influences, and how it can foreground an oft‐overlooked aspect of the issue – the demands of self‐care technologies and consequences for participation in social life. Drawing on interviews and focus groups with 25 young type‐1 diabetes outpatients in London, UK, the study points to the conflicts that occur when disease management technologies compete for time and space with the social practices of everyday life, and when self‐care tasks threaten to interrupt the flow of social life and make people feel ‘left behind’. The paper concludes that young people are disabled by the contingent position of self‐care activities in daily life, which oblige them to compromise either their physical health or their immersion in the social world. This disabling effect would be mitigated if social practices were reorganised to make them more amenable to the time‐space requirements of disease management. A social practice theory lens can help throw light onto this issue and make a valuable contribution to the study of the self‐management of chronic illness.     

The moral orders of work and health: a case of sick leave due to burnout

Being on sick leave due to burnout entails a high level of accountability. Persons suffering from burnout do not automatically play a legitimate sick role because of the fuzziness of the burnout concept. In addition, while being on sick leave, they are in a non‐working position, which is against the ideals of work‐centred society. Therefore, they are required to explain their ‘deviant’ situation. Drawing on the interview data, the article explores how sick leave is explained and justified in narrative accounts by Finnish burnout sufferers. Results show that sick leave makes the moral orders of work, health and illness visible. Sick leave as a process involves negotiation of one's status and worth in the categories of ‘respectable employee’ and ‘credible patient’. A transition to sick leave requires causal explanations of burnout, which aim to legitimate ill‐being. Being on sick leave creates an obligation for activity and productivity that is ‘work‐like’ management of health. The study shows the fundamental level at which work structures everyday life, routines, and habits in the work‐centred society. In this context, burnout sufferers struggle to legitimise their work‐related distress and absence from work and restore their morally worthy identities.     

Feeding the family at the end-of-life: An ethnographic study on the role of food and eating practices for families facing death in Portugal

Little has been said about the disruptive impact that the inability to eat and to participate in mealtimes has for patients with a life-threatening illness and their families. The aim of the current study is to overcome this gap and shed light on how food and eating practices are experienced by families at the end-of-life. An ethnographic research was developed in two Portuguese palliative care units: participant observation was conducted during 10 months and in-depth interviews were carried out with 10 patients with a life-threatening illness, 20 family members and 20 palliative care professionals. Food is not only a matter of nutrition in a biological sense, but also an act of giving care to patients with a life-threatening illness. The findings suggest that food and eating practices affect the processes of relationality and of doing family at the end-of-life in Portugal. Attention is particularly paid to gender differences. The study supports recent sociological research which understands the dying process as a relational experience and intends to develop sociological knowledge on the materialities of care.     

Introducing the idea of ‘assumed shared food narratives’ in the context of social networks: reflections from a qualitative study conducted in Nottingham,England

This study explores the ways in which social networks might shape accounts about food practices. Drawing on insights from the work of Christakis and Fowler ( 2007 ) whose claims about the linkages between obesity and social networks have been the subject of vigorous debate in the sociological literature, we present qualitative data from a study of women's’ accounts of social networks and food practices, conducted in Nottingham, England. We tentatively suggest that whilst social networks in their broadest sense, might shape what was perceived to be normal and acceptable in relation to food practices (and provide everyday discursive resources which normalise practice), the relationship between the two is more complex than the linear relationship proposed by Christakis and Fowler. Here, we introduce the idea of assumed shared food narratives (ASFNs), which, we propose, sheds light on motive talk about food practices, and which also provide practical and discursive resources to actors seeking to protect and defend against ‘untoward’ behaviour, in the context of public health messages around food and eating. We suggest that understanding ASFNs and the ways in which they are embedded in social networks represents a novel way of understanding food and eating practices from a sociological perspective.