History, culture and traditions: the silent spaces in the study of spirituality at the end of life

Recent increase in the number of studies on spirituality manifests growing recognition of the importance of spirituality, as well as mounting interest in studying spirituality in healthcare. Most studies on spirituality in end of life care focus on identifying specific features of spirituality and often represent an individualistic understanding of spirituality. They seldom engage in a historical–cultural exploration of the contextual meanings of those features of spirituality. This paper aims to demonstrate the absence of contextual factors in studying spirituality at the end of life and to highlight the growing recognition of the importance of history, culture and traditions as resources to enrich our understanding of spirituality. An exploration of the concept of spirituality, an overview of the trajectory of the study of spirituality and a review of existing methodological stances reveal the silent space in current approaches to understanding spirituality at the end of life. Recognition of the importance of these contextual factors in understanding spirituality is growing, which is yet to influence the conceptualization and the conduct of spirituality research. Contextual understandings of spirituality that incorporate insights from the history, culture and traditions of specific contexts can inform effective means for providing spiritual support in clinical practice

Indian philosophical foundations of spirituality at the end of life

Growing understanding of spirituality at the end of life demands more theoretical research on the subject. Empirical studies have highlighted the need for exploring philosophical and cultural concepts to facilitate a fuller understanding of spirituality at the end of life. This paper explores Indian philosophy to inform the conceptualisation of spirituality at the end of life in the Indian context. Three key themes from discourses on spirituality at the end of life have been analysed: the concept of the human person, the purpose of life and the meaning of death. The human person is from and of the Divine, eternal and is capable of cognition and experience. The purpose of human life is to unite with the ultimate Reality, the Divine, by living life righteously according to prescribed ways and by achieving detachment from the illusion of the world. Death is part of life and not that which ends it. The moment of death is an opportunity for the ultimate transformation, Moksha. Analysing these philosophical foundations can provide the contextual frame for understanding the spiritual needs of palliative care patients and their families and the possibility of developing culturally relevant approaches to providing spiritual care at the end of life

Palliative care declarations: mapping a new form of intervention

No abstract available

The level of provision of specialist palliative care services in Scotland: an international benchmarking study

Objectives: Comparative benchmarking of specialist palliative care (SPC) services across jurisdictions can be used to assess the adequacy of provision. Published in 2016, the Scottish Atlas of Palliative Care unlocks the possibility of benchmarking Scotland’s provision against other European Union (EU) countries. Our objectives were to describe the provision of SPC services in Scotland and compare this with other EU countries, assessing coverage against European norms. Methods: We conducted a secondary analysis of data collected as part for the Scottish Atlas by structured telephone (n=33) or online (n=3) survey with informants from 14 territorial health boards and 15 hospices who provided information about SPC services in their locality. National-level Scottish data were compared with data from other EU countries allowing ranking for each service type and service coverage as calculated against European Association for Palliative Care norms. Results: Scotland had a total of 23 SPC inpatient units containing 349 beds, 27 SPC hospital support teams and 38 SPC home care teams. Relative to other EU countries, Scotland ranked seventh for provision of SPC inpatient units and hospital support teams, and fifth for home care teams. Coverage for these services was 85%, 100% and 72%, respectively. Conclusion: Scotland is positioned among the top 10 EU countries for the level of provision of SPC services. National policy in Scotland has focused on the delivery of palliative care at home or in a homely setting. These data support a focus on developing services in community settings to meet Scotland’s policy ambitions

International transfer and translation of an end of life care intervention: the case of the Liverpool Care Pathway for the dying patient

We explore how and why the Liverpool Care Pathway (LCP) for the dying patient was transferred to 20 countries beyond the UK, and with what consequences for policy and practice. Our paper synthesises findings from 95 publications contained in a historical narrative literature review on the implementation of the LCP outside the United Kingdom, alongside data from 18 qualitative interviews with 19 key actors involved with the LCP in 14 countries. We use the review to explore the timelines and patterns of development and implementation in the specific countries, to consider what forms of research and evaluation about the LCP were undertaken to establish its effectiveness, and to summarise the resulting findings and their consequences. We use the interviews to gain insights into the elements, processes and dynamics that shaped the transfer and translation of the LCP from one location to another, across national boundaries. Using six questions from the policy transfer literature we then explain who were the key actors involved; what was transferred; from where lessons were drawn; the different degrees of transfer that took place; what restricted or facilitated transfer; and how transfer was related to ‘success’ or ‘failure’. We conclude that the spread of the LCP took place mostly in prosperous countries, and was sustained over around 15 years. It took in differing geographies and cultures, and a variety of linguistic, policy and practice contexts. If it did not succeed in a wider transformational goal, it appears to have been well received and perceived as beneficial in many contexts, largely avoiding accusations of mis-use and harm that had occurred in the UK, and in some cases fostering a sustained international collaboration and ongoing use of local variants, even after withdrawal in its country of origin in 2014

Representations of palliative care, euthanasia and assisted dying within advocacy declarations

It is well known that there are disagreements between the proponents of palliative care and of euthanasia or assisted dying, often with little common ground,shaping the end of life discourse internationally. Advocacy documents or ‘declarations’constitute a significant feature of this discourse. The aim of this study was to explore the content of such declarations and to focus on what they can tell us about palliative care and assisted dying and their dispositions towards one another. 104 declarations were identified and included in the study, covering the period 1974 to 2017. These declarations were analysed following the principles of thematic content analysis. We classified them based on their primary purpose: those with the goal of advocating for palliative care services, education and research were grouped under ‘palliative care declarations’; those with the primary objective of advocating for or against euthanasia/assisted dying were classified as “euthanasia/assisted dying declarations”. Our analysis revealed that the content of the declarations could be broadly categorised into three dimensions: framing, claiming and demanding. We demonstrate that these declarations reveal a struggle over the construction of meanings relating to palliative care and assisted dying and constitute a valuable resource for the analysis of an unfolding debate

Interventions at the end of life – a taxonomy for ‘overlapping consensus’

Context: Around the world there is increasing interest in end of life issues. An unprecedented number of people dying in future decades will put new strains on families, communities, services and governments. It will also have implications for representations of death and dying within society and for the overall orientation of health and social care. What interventions are emerging in the face of these challenges? Methods: We conceptualize a comprehensive taxonomy of interventions, defined as ‘organized responses to end of life issues’. Findings: We classify the range of end of life interventions into 10 substantive categories: policy, advocacy, educational, ethico-legal, service, clinical, research, cultural, intangible, self-determined. We distinguish between two empirical aspects of any end of life intervention: the ‘locus’ refers to the space or spaces in which it is situated; the ‘focus’ captures its distinct character and purpose. We also contend that end of life interventions can be seen conceptually in two ways – as ‘frames’ (organized responses that primarily construct a shared understanding of an end of life issue) or as ‘instruments’ (organized responses that assume a shared understanding and then move to act in that context). Conclusions: Our taxonomy opens up the debate about end of life interventions in new ways to provide protagonists, activists, policy makers, clinicians, researchers and educators with a comprehensive framework in which to place their endeavours and more effectively to assess their efficacy. Following the inspiration of political philosopher John Rawls, we seek to foster an ‘overlapping consensus’ on how interventions at the end of life can be construed, understood and assessed

A moment for compassion: emerging rhetorics in end-of-life care

Compassion is an emotional response to the suffering of others. Once felt, it entails subsequent action to ameliorate their suffering. Recently, ‘compassion’ has become the flagship concept to be fostered in the delivery of end-of-life care, and a rallying call for social action and public health intervention. In this paper, we examine the emerging rhetorics of compassion as they relate to end-of-life care and offer a critique of the expanding discourse around it. We argue that, even where individuals ‘possess’ compassion or are ‘trained’ in it, there are difficulties for compassion to flow freely, particularly within Western society. This relates to specific sociopolitical structural factors that include the sense of privacy and individualism in modern industrialised countries, highly professionalised closed health systems, anxiety about litigation on health and safety grounds, and a context of suspicion and mistrust within the global political scenario. We must then ask ourselves whether compassion can be created intentionally, without paying attention to the structural aspects of society. One consequence of globalisation is that countries in the global South are rapidly trying to embrace the features of modernity adopted by the global North. We argue that unrealistic assumptions have been made about the role of compassion in end-of-life care and these idealist aspirations must be tempered by a more structural assessment of potential. Compassion that is not tied to to realistic action runs the risk of becoming empty rhetoric

Erasmus Mundus Master of Bioethics: a case for an effective model for international bioethics education

Designing bioethics curriculum for international postgraduate students is a challenging task. There are at least two main questions, which have to be resolved in advance: (1) what is a purpose of a particular teaching program and (2) how to respectfully arrange a classroom for students coming from different cultural and professional backgrounds. In our paper we analyze the case of the Erasmus Mundus Master of Bioethics program and provide recommendations for international bioethics education. In our opinion teaching bioethics to postgraduate international students goes beyond curriculum. It means that such a program requires not only well-defined goals, including equipping students with necessary skills and knowledge, but also it should first and foremost facilitate positive group dynamics among students and enables them to engage in dialogue to learn from one another

Common or multiple futures for end of life care around the world? Ideas from the ‘waiting room of history’

Around the world there is growing interest in the manner in which care is delivered to people at the end of life. However, there is little unanimity on what constitutes a ‘good death’ and the appropriate societal responses to the issue of delivering culturally relevant and sustainable forms of end of life care in different settings are not subjects of broad agreement. In this critical conceptual paper we focus on the emerging narratives of global palliative care and offer an assessment of their implications. We relate this to calls to improve end of life care across jurisdictions and settings, attempts to map and grade the development of palliative care provision, and to the emergence of a widely recognised global ‘quality of death index’. We consider an alternative approach to framing this debate, drawn from a subaltern and post-colonial studies perspective and suggest that adopting a truly global perspective will require acceptance of the plurality of past and present local problems and issues relating to end of life care, as well as the plural possibilities of how they might be overcome. In that context, we would not aim to universalise or privilege one particular global future for end of life care. Instead of homogenising end of life interventions, we seek to be open to multiple futures for the care of the dying