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

Temperature of coastal waters and of watercourses from ASTER images

This paper presents an algorithm to improve the spatial resolution, from 90 m to 30 m, of the thermal mapping of small bodies of water or near coasts obtained from the ASTER satellite sensor. The entire procedure is based only on ASTER images. The frst part of the work deals with the physical and mathematical basis on which the algorithm was constructed, the schema of the main steps and the methods of validation of the algorithm. In the second part two applications of the algorithm are shown, the frst on the area of the delta of the Po River (Italy), the second on the lagoon of Venice (Italy)

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

Human Cystic Echinococcosis: Old Problems and New Perspectives

Cystic echinococcosis (CE) is a widespread chronic endemic helminthic disease caused by infection with metacestodes of the tapeworm Echinococcus granulosus. CE affects humans and has a worldwide prevalence of approximately six million. In this review, we discuss current findings in diagnosis and clinical management of CE and new concepts relating to E. granulosus molecules that directly modulate the host immune responses favouring a strong anti-inflammatory response and perpetuating parasite survival in the host. New insights into the molecular biology of E. granulosus will improve considerably our knowledge of the disease and will provide new potential therapeutic applications to treat or prevent inflammatory immune-mediated disease

Mt. Etna aerosol optical thickness from MIVIS images

This work focuses on the evaluation of Aerosol Optical Thickness (AOT) in Mt. Etna volcano area starting from the analysis of MIVIS VIS images. MIVIS images and ancillary data (atmospheric profiles, photometric measurements, atmospheric infrared radiances, surface temperatures, ground reflectances, SO2 abundances) were collected during the Sicily '97 campaign. Data elaboration was performed with extensive use of 6S radiative transfer model, determining optical thickness with an inversion algorithm that uses atmospheric vertical profile, ground reflectance data and radiance measured by the first MIVIS spectrometer (channels 1-20; range 0.44-0.82 mu). Ground reflectance is the most problematic parameter for the algorithm. In order to have a low and 'uniform' surface reflectance, only pixels located at an altitude between 2000-3000 in a.s.l. were analysed. At this altitude, AOT is very low during non-eruptive periods: at Torre del Filosofo (2920 in a.s.l.) on June 16th 1997, during one MIVIS flight, AOT at 0.55 mu was 0.19. The uncertainty about ground reflectance produces significant errors on volcanic background AOT, and in some cases the error is up to 100%. The developed algorithm worked well on volcanic plume, allowing us to determine the plume related pixels' AOT. High plume AOT values minimize the problems deriving from reflectance uncertainty. Plume optical thickness shows values included in a range from 0.5 to 1.0. The plume AOT map of Mt. Etna volcano, derived from a MIVIS image of June 16th 1997, is presented

Mt. Etna aerosol optical thickness from MIVIS images

This work focuses on the evaluation of Aerosol Optical Thickness (AOT) in Mt. Etna volcano area starting from the analysis of MIVIS VIS images. MIVIS images and ancillary data (atmospheric profiles, photometric measurements, atmospheric infrared radiances, surface temperatures, ground reflectances, SO2 abundances) were collected during the «Sicily ’97» campaign. Data elaboration was performed with extensive use of 6S radiative transfer model, determining optical thickness with an inversion algorithm that uses atmospheric vertical profile, ground reflectance data and radiance measured by the first MIVIS spectrometer (channels 1-20; range 0.44-0.82 n). Ground reflectance is the most problematic parameter for the algorithm. In order to have a low and ‘uniform’ surface reflectance, only pixels located at an altitude between 2000-3000 m a.s.l. were analysed. At this altitude,AOT is very low during non-eruptive periods: at Torre del Filosofo (2920 m a.s.l.) on June 16th 1997, during one MIVIS flight, AOT at 0.55 n was 0.19. The uncertainty about ground reflectance produces significant errors on volcanic background AOT, and in some cases the error is up to 100%. The developed algorithm worked well on volcanic plume, allowing us to determine the plume related pixels’AOT. High plume AOT values minimize the problems deriving from reflectance uncertainty. Plume optical thickness shows values included in a range from 0.5 to 1.0. The plume AOT map of Mt. Etna volcano, derived from a MIVIS image of June 16th 1997, is presented