17 research outputs found
End of Life Care in English Care Homes :Governance, Care Work and the Good Death
Almost 30% of all deaths in England are now of care home residents, with care homes predicted to become the most common place-of-death in England by 2040. However, end-of-life care (EOLC) in care homes is often reported as suboptimal. In the first in-depth and wide-ranging study on the topic in nearly 20 years, this thesis examines the management of residents’ dying in and by English care homes. Applying a mixed-methods design, the thesis is based on secondary quantitative analysis of the English Longitudinal Study of Ageing (ELSA), ethnographic fieldwork in five residential and nursing care homes in the South-West of England, and recorded interviews with 25 staff members. Building on Marxist-feminist social reproduction theory and Foucault’s biopolitics, the thesis conceptualises issues of paid care work, the predictability of resident’s dying, the governance of EOLC, and the good death in the care home context.
The thesis argues that care work in care homes is shaped by the governance priorities to keep residents on the care home’s premises (custodial), keep them alive (medico-legal), and achieve both while curtailing costs to NHS England and care home providers (economic). These priorities reduce care work to bodily care, extend residents’ dying trajectories, and construct the good and natural death in care homes as the regulations-compliant death. The unpredictability of residents’ deaths is the result of both residents’ underlying conditions and the over-extension of their dying trajectories by the health and social care provided by carers, senior staff and GPs. The thesis concludes by arguing that the devaluation of the non-instrumental aspects of carers’ emotional work marginalises existential questions about residents’ desires to live or die and the loss of their capacity to act as persons. The devaluation of the non-instrumental aspects of emotional care work mirrors the devaluation of social reproduction work in English society. It further constrains carers’ ability to treat residents as people with emotions and desires about the way they die as opposed to the mere recipients of bed and body care/work aimed at the realisation of regulations-compliant deaths
Care homes as hospices for the prevalent form of dying: An analysis of long-term care provision towards the end of life in England
In the UK and the Westernised countries, most people die aged 80+ from disabling, chronic and degenerative diseases, having spent several years in poor health. There is thus continuity between long-term care (LTC) and end of life care (EOLC) in old age, but this continuity is poorly understood within policy and almost nothing is known about what determines the modality and intensity of LTC provision in old age towards the end of life. Drawing on multinomial logistic regression analysis of the English Longitudinal Study of Ageing (ELSA), this paper evaluates how health and socio-demographic factors affect the relative probability of receiving care through one of five long-term care arrangements (LTCAs) from the time of need at age ≥50 to death; and assesses the consequences this has for the English LTC and EOLC policy and planning. The study reveals that hospices provide end-of-life LTC for cancer diagnoses and adults aged 50–64, while care homes provide open-ended and end-of-life LTC for non-cancer diagnoses, dementia, severe disability, and adults aged 80+. Further, the informal, formal, mixed and care home LTCAs reflect increasing levels of disability and ill-health, and decreasing levels of family support, with differences concerning education and gender. Finally, dementia and Parkinson's disease are the single strongest determinants of high formal LTC provision, and overall high care needs determine high formal LTC provision. Within the English context, the consequences of this are that: 1) Continued reliance on informal family care is not sustainable; 2) To provide free formal LTC to old adults with high care needs is appropriate; and 3) Hospices do not cater for the prevalent form of dying in old age while care homes do, being the de facto hospices for severely disabled, very old (80+) adults with dementia. Yet this is not represented in English EOLC policy and research
Care homes as hospices: the problem with long-term care provision towards the end of life in England
The people most likely to experience disadvantaged access to palliative care and unexpected death are those living at home and in care homes, writes Diana Teggi. She explains how the care sector can ensure proper and compassionate care, especially in the light of COVID-19
Ethnographic Practice and New Materialist Onto-Epistemologies
This paper asks how new materialist onto-epistemologies (Braidotti, 2013) reshape our understanding of ethnographic writing, fieldwork and interviewing, well-attested methods in the social sciences. The feminist strand of new materialism this paper follows (Barad, 2007; Haraway, 2008; Braidotti, 2013) questions two common practices in ethnography: (1) the presentation of ethnographic insights as mirroring research participants’ experiences, and (2) the erasure of researchers’ subjectivity and positioning within the intersecting axes of difference and power that structure the social field (i.e. race, gender, ability, age, social class, sexuality, neurodiversity etc.) .Positivist research paradigms, still dominating the social sciences, induce qualitative researchers to obliterate themselves from their research output, even if they are part of it.The concept of intra- actions (Barad, 2007) combined with Donna Haraway’s situated knowledges (1988) provide the grounds to argue for the onto-epistemological, ethical and political validity of knowledges marked by strong positionality and co-produced through inevitably asymmetrical research rapports. This stance demands researchers to be self-reflexive and reflexive of systemic power differentials, and their impact on the research process. It also fosters the insurrection subjugated knowledges (Stryker, 2006; Foucault, 2010; Bauer, 2014). I first elaborated this new materialist approach to ethnography in my M.A. Thesis, a case study of a nursing home for the aged in England. In this paper, I would like to focus on the research rapports I could not discuss in my thesis. These are those with a participant who addressed me sexually, and the reaction of my supervisor and gatekeeper when I reported this
A new materialist approach to ethnography
This paper asks how new materialist onto-epistemologies (Braidotti, 2013) reshape our understanding of researchers’ positionality in ethnography.
This paper draws on the feminist strand of new materialism developed in the works of Karen Barad (2007), Rosi Braidotti (2013, 2006) and Donna Haraway (1988, 1991). Feminist new materialist approaches1 question two tenets of ethnographic fieldwork, interviewing2 and writing: 1) the generation and presentation of knowledge as from the point of view of the ‘studied subject(s)’, and 2) the erasure of researchers’ subjectivity in the process of knowledge-production (see Maso, 2014, p. 138; Stanley, 2014, p. 100).
Positivistic research paradigms, having major currency in the social sciences, induce qualitative researchers to obliterate themselves from their research output, even if they are part of it. The concepts of intra-action (Barad, 2007) and situated knowledges (Haraway, 1988) provide the grounds for the epistemological, ethical and political legitimacy of knowledges marked by positionality and co-produced through the (inevitably) asymmetrical social relations occurring in the field. This stance demands of and entitles researchers to be accountable for the power structures that shape the researcher/research participant(s) interactions (Foley, 2002). It also prompts researchers to be self-reflexive of the affective and emotional entanglements with their own research (Hockey, 2007; Valentine, 2007; Watts, 2008; Woodthorpe, 2011).
I will argue for a feminist new materialist approach to ethnography, and its potential to foster the insurrection of subjugated knowledges (Foucault, 2010), based on a meta-analysis of my research with institutionalised older adults living and dying in care homes. My M.A. dissertation at Humboldt University, Berlin (2016) was in fact the ethnography of an English nursing home for the aged. The focus of the ethnography lied on residents’ experience of living the last phase of their lives in institutional permanent care and with dependency, disability and chronic illnesses. To engage in conversation with the residents made me aware of the issues surrounding the neutrality, objectivity and detachment usually required of researchers
Unexpected death in ill old age: An analysis of disadvantaged dying in the English old population
The literature on death expectation in ill old age is mostly medical. A social science standpoint (especially quantitative) is practically absent. However, whether families, social and healthcare services can anticipate, support and prepare for the deaths of ill old adults is not reducible to the biomedical paradigm. Yet it is critical for end of life care (EOLC) policy. This study's aim is to investigate relatives' perception of death as unexpected in relation to both disease-related and care-related factors. Using the English Longitudinal Study of Ageing End-of-life Interviews Wave 6 this paper draws on probit regression analysis of unexpected (vs. expected) death in ill adults aged 50+. Findings are interpreted considering the containment of sudden death and the trajectories of dying in ill old age. The latter display overall visible decline preceding death. On this basis, EOLC literature and policy evidence death's uncertain timing as much as death's certain emergence in the horizon of expectation. Therefore, unexpected death in ill old age was interpreted as a failure to acknowledge dying, rather than the impossibility of discerning its approach. Very old age, dementia diagnoses and supported care environments were found to shape unexpected death.
Keywords: Care homes; Death identification; Dementia; End-of-life care; England (UK); Old age dying; Palliative care; Relatives
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End of Life Care in English Care Homes: Governance, Care Work and The Good Death
Since the beginning of the COVID-19 pandemic, care homes have been in the eye of the storm. A large proportion of COVID deaths in England and Europe has come from those living in care homes. This should come as little surprise given the prevalence of chronic underlying conditions in the care home population (Teggi 2020) and that 28% of all deaths in England are of care home residents (NEoLCIN 2017). However, very little is known about dying and end of life care (EOLC) in care homes, the last multi-sited ethnographic study on the topic being more than 25 years-old (Sidell et al. 1995). This paper presents the ethnographic and qualitative findings from a mixed-methods study of EOLC in five residential and nursing care homes in the South-West of England. It shows that EOLC in care homes is shaped by: (1) the uncertainty of death’s timing in old age; (2) the need for staff to predict and anticipate the time of residents’ dying; (3) the need to balance institutional pressures to keep residents alive (or let them die) with residents’ agency and best interest; and (4) staffing levels enabling or disabling carers to sit and just ‘be with’ residents as they are dying. The study depicts a complicate picture of failing bodies, existential uncertainty, EOLC governance and relationships of care between staff and residents that challenges received notions of medicalisation, institutionalisation and social death in very old age. This knowledge is crucial in the wake of a pandemic that risks stigmatising care homes once again as places for bad living and bad dying
End of Life Care in English Care Homes:Governance, Care Work and The Good Death
Since the beginning of the COVID-19 pandemic, care homes have been in the eye of the storm. A large proportion of COVID deaths in England and Europe has come from those living in care homes. This should come as little surprise given the prevalence of chronic underlying conditions in the care home population (Teggi 2020) and that 28% of all deaths in England are of care home residents (NEoLCIN 2017). However, very little is known about dying and end of life care (EOLC) in care homes, the last multi-sited ethnographic study on the topic being more than 25 years-old (Sidell et al. 1995). This paper presents the ethnographic and qualitative findings from a mixed-methods study of EOLC in five residential and nursing care homes in the South-West of England. It shows that EOLC in care homes is shaped by: (1) the uncertainty of death’s timing in old age; (2) the need for staff to predict and anticipate the time of residents’ dying; (3) the need to balance institutional pressures to keep residents alive (or let them die) with residents’ agency and best interest; and (4) staffing levels enabling or disabling carers to sit and just ‘be with’ residents as they are dying. The study depicts a complicate picture of failing bodies, existential uncertainty, EOLC governance and relationships of care between staff and residents that challenges received notions of medicalisation, institutionalisation and social death in very old age. This knowledge is crucial in the wake of a pandemic that risks stigmatising care homes once again as places for bad living and bad dying
Recommended from our members
End of Life Care in English Care Homes : Governance, Care Work and the Good Death
Almost 30% of all deaths in England are now of care home residents, with care homes predicted to become the most common place-of-death in England by 2040. However, end-of-life care (EOLC) in care homes is often reported as suboptimal. In the first in-depth and wide-ranging study on the topic in nearly 20 years, this thesis examines the management of residents’ dying in and by English care homes. Applying a mixed-methods design, the thesis is based on secondary quantitative analysis of the English Longitudinal Study of Ageing (ELSA), ethnographic fieldwork in five residential and nursing care homes in the South-West of England, and recorded interviews with 25 staff members. Building on Marxist-feminist social reproduction theory and Foucault’s biopolitics, the thesis conceptualises issues of paid care work, the predictability of resident’s dying, the governance of EOLC, and the good death in the care home context.
The thesis argues that care work in care homes is shaped by the governance priorities to keep residents on the care home’s premises (custodial), keep them alive (medico-legal), and achieve both while curtailing costs to NHS England and care home providers (economic). These priorities reduce care work to bodily care, extend residents’ dying trajectories, and construct the good and natural death in care homes as the regulations-compliant death. The unpredictability of residents’ deaths is the result of both residents’ underlying conditions and the over-extension of their dying trajectories by the health and social care provided by carers, senior staff and GPs. The thesis concludes by arguing that the devaluation of the non-instrumental aspects of carers’ emotional work marginalises existential questions about residents’ desires to live or die and the loss of their capacity to act as persons. The devaluation of the non-instrumental aspects of emotional care work mirrors the devaluation of social reproduction work in English society. It further constrains carers’ ability to treat residents as people with emotions and desires about the way they die as opposed to the mere recipients of bed and body care/work aimed at the realisation of regulations-compliant deaths
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The Management of Death in Care Homes: Homemaking and Death Panel
In England, care homes for older adults function as both homes and institutions for their residents. As a matter of fact, residents live in the care home, where they spend most of their time, have many of their personal belongings and their registered addresses. At the same time, care homes are institutions for the care and safety of residents, with legislative and regulatory frameworks governing the (social and health) care residents receive, staff’s working practices and residents’ lives on their premises. I call this set of regulatory pressures shaping the care home system ‘care home governance’. In this paper, I analyse how residents’ dying is managed so as to happen in the care home and realise both governance objectives and cultural expectations of a ‘good’ death. The notion of home is engaged differently by governance and staff perspectives when they claim that a care home death is a ‘good’ death. Part of the Homemaking and Death Panel organised by Dr Kate Woodthorpe (Centre for Death and Society, University of Bath