Using an end-of-life care pathway in acute stroke: a mixed methods study of decision-making and care experiences

Background: The evidence base on end-of-life care in acute stroke is limited, particularly with regard to recognising dying and related decision-making. There is also limited evidence to support the use of end-of-life care pathways (standardised care plans) for patients who are dying after stroke. Aim: This study aimed to explore the clinical decision-making involved in placing patients on an end-of-life care pathway, evaluate predictors of care pathway use, and investigate the role of families in decision-making. The study also aimed to examine experiences of end-of-life care pathway use for stroke patients, their relatives and the multi-disciplinary health care team. Methods: A mixed methods design was adopted. Data were collected in four Scottish acute stroke units. Case-notes were identified prospectively from 100 consecutive stroke deaths and reviewed. Multivariate analysis was performed on case-note data. Semi-structured interviews were conducted with 17 relatives of stroke decedents and 23 healthcare professionals, using a modified grounded theory approach to collect and analyse data. The VOICES survey tool was also administered to the bereaved relatives and data were analysed using descriptive statistics and thematic analysis of free-text responses. Results: Relatives often played an important role in influencing aspects of end-of-life care, including decisions to use an end-of-life care pathway. Some relatives experienced enduring distress with their perceived responsibility for care decisions. Relatives felt unprepared for and were distressed by prolonged dying processes, which were often associated with severe dysphagia. Pro-active information-giving by staff was reported as supportive by relatives. Healthcare professionals generally avoided discussing place of care with families. Decisions to use an end-of-life care pathway were not predicted by patients’ demographic characteristics; decisions were generally made in consultation with families and the extended health care team, and were made within regular working hours. Conclusion: Distressing stroke-related issues were more prominent in participants’ accounts than concerns with the end-of-life care pathway used. Relatives sometimes perceived themselves as responsible for important clinical decisions. Witnessing prolonged dying processes was difficult for healthcare professionals and families, particularly in relation to the management of persistent major swallowing difficulties.

Administrative justice and the control of bureaucratic decision-making: A study investigating how decision-makers in local authority education departments respond to the work of redress mechanisms

This socio-legal thesis has explored the factors responsible for explaining whether and how redress mechanisms control bureaucratic decision-making. The research considered the three principal institutions of administrative justice: courts, tribunals, and ombudsman schemes. The field setting was the local authority education area and the thesis examined bureaucratic decision-making about admissions to school, home-to-school transport, and Special Educational Needs (SEN). The thesis adopted a qualitative approach, using interviews and documentary research, within a multiple embedded case study design. The intellectual foundations of the research were inter-disciplinary, cutting across law, socio-legal studies, public administration, organization studies, and social policy. The thesis drew on these scholarly fields to explore the nature of bureaucratic decision-making, the extent to which it can be controlled and the way that learning occurs in bureaucracies and, finally, the extent to which redress mechanisms might exercise control. The concept of control was studied across all its dimensions – in relation both to ex post control in specific cases and the more challenging notion of ex ante or structuring control. The aim of the thesis was not to measure the prevalence of bureaucratic control by redress mechanisms, but to understand the factors that might explain its presence or absence in a particular area. The findings of the research have allowed for a number of analytical refinements and extensions to be made to existing theoretical and empirical understandings. 14 factors, along with 87 supporting propositions, have been set out with the aim of making empirically derived suggestions which can be followed up in future research. In terms of the thesis’ contribution to existing knowledge, its comparative focus and its emphasis on the broad notion of control offered the potential for new insights to be developed. Overall, the thesis claims to have made three contributions to the conceptual framework for understanding the exercise of control by redress mechanisms: it emphasizes the importance of ‘feedback’ in relation to the nature of the cases referred to redress mechanisms; it calls attention to the structure of bureaucratic decision-making as well as its normative character; and it discusses how the operational modes of redress mechanisms relate to their control functions.

'Expanding Horizons': investigating the Glasgow 2014 legacy for young people in the East End of Glasgow

The recent staging of Glasgow 2014 drew universal praise as the ‘Best Games Ever’. Yet the substantial undertaking of hosting the Commonwealth Games (CWG) was sold to the nation as more than just eleven days of sporting spectacle and cultural entertainment. Indeed, the primary strategic justification offered by policymakers and city leaders was the delivery of a bundle of positive and enduring benefits, so-called ‘legacy’. This ubiquitous and amorphous concept has evolved over time to become the central focus of contemporary hosting bids, reflecting a general public policy shift towards using major sporting mega events as a catalyst to generate benefits across economic, environmental and social dimensions, on a scale intended to be truly transformative. At the same time, the academy has drawn attention to the absence of evidence in support of the prevailing legacy rhetoric and raised a number of sociological concerns, not least the socially unequitable distribution of purported benefits. This study investigated how young people living in the core hosting zone related to, and were impacted upon, by the CWG and its associated developments and activities with reference to their socio-spatial horizons, the primary outcome of interest. An ‘ideal world’ Logic Model hypothesised that four mechanisms, identified from official legacy documents and social theories, would alter young people’s subjective readings of the world by virtue of broadening their social networks, extending their spatial boundaries and altering their mind sets. A qualitative methodology facilitated the gathering of situated and contextualised accounts of young people’s attitudes, perceptions, beliefs and behaviours relating to Glasgow 2014. In-depth interviews and focus groups were conducted before and after the Games with 26 young people, aged 14-16 years, at two schools in the East End. This approach was instrumental in privileging the interests of people ‘on the ground’ over those of city-wide and national stakeholders. The findings showed that young people perceived the dominant legacy benefit to be an improved reputation and image for Glasgow and the East End. Primary beneficiaries were identified by them as those with vested business interests e.g. retailers, restaurateurs, and hoteliers, as well as national and local government, with low expectations of personal dividends or ‘trickle down’ benefits. Support for Glasgow 2014 did not necessarily translate into individual engagement with the various cultural and sporting activities leading up to the CWG, including the event itself. The study found that young people who engaged most were those who had the ability to ‘read’ the opportunities available to them and who had the social, cultural and economic capital necessary to grasp them, with the corollary that those who might have gained most were the least likely to have engaged with the CWG. Doubts articulated by research participants about the social sustainability of Glasgow 2014 underscored inherent tensions between the short-lived thrill of the spectacle and the anticipated longevity of its impacts. The headline message is that hosting sporting mega events might not be an effective means of delivering social change. Aspirant host cities should consider more socially equitable alternatives to sporting mega events prior to bidding; and future host cities should endeavour to engage more purposefully with more young people over longer time frames.