Hamilton Inbadas

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.

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.

Palliative Care Declarations: Mapping a New Form of Intervention

To the Editor: It is 21 years since the JPSM published the Declaration of Florian opolis, drawing attention to the need for improved access to pain and palliative care services in Latin America. In the intervening years, there has been a growing tendency for palliative care associations and organizations to issue formal public statements of this type. Declarations have become part of the international palliative care landscape. They appear to require significant orchestration and planning, and yet they have not been examined from a research perspective. Defined as ‘‘statement(s) of intent or summaries of the desirable situation to which participants intend to work and to which they would like to encourage others to work,’’ declarations highlight matters of particular concern or call others to action in some way. They are a window on the priorities emerging in the field. Understanding why, how, and with what effect declarations are produced has the potential to inform those who develop them and to improve their formulation and impact in the future. Our exploratory study set out to 1) map the emergence of the practice of palliative and end-of-life care declarations in the international context, 2) capture their form and characteristics, and 3) assess what is known about their purpose. To achieve this, we built a comprehensive collection and timeline of declarations that relate to palliative and end-of-life care, and are available in the public domain.

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.

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.

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.

Indian philosophical foundations of spirituality at the end of life

Abstract 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.

The philosophical and cultural situatedness of spirituality at the end of life in India

The sustained interest in exploring the spiritual domain at end of life in the Indian context reflects the recognition of its significance as an integral part of palliative care. A key aspect of findings from studies so far is the identification of challenges, inadequacies, limitations and ethical dilemmas in relation to spirituality at the end of life. India is known for its rich spiritual heritage and has unique ways of understanding, experiencing and expressing spirituality. The philosophical and cultural frames of reference, with which communities in India make sense of life, death and dying, determine the characteristics of Indian spirituality at the end of life. Exploring the concepts of the human person, the purpose of human life, the meaning of death and caring for the dying using Indian philosophical and cultural resources can help address some of the identified limitations and challenges in the Indian context. A cross-disciplinary approach, drawing together expertise from clinical palliative care, philosophy, theology and sociology, will enrich the understanding of spirituality at the end of life and can contribute to effective spiritual care in palliative care in specific contexts around the world.

Declarations on euthanasia and assisted dying

ABSTRACT Declarations on end-of-life issues are advocacy interventions that seek to influence policy, raise awareness and call others to action. Despite increasing prominence, they have attracted little attention from researchers. This study tracks the emergence, content, and purpose of declarations concerned with assisted dying and euthanasia, in the global context. The authors identified 62 assisted dying/euthanasia declarations covering 1974–2016 and analyzed them for originating organization, geographic scope, format, and stated viewpoint on assisted dying/euthanasia. The declarations emerged from diverse organizational settings and became more frequent over time. Most opposed assisted dying/euthanasia.

Principles of Spiritual Care in End-Of-Life Care in India: A Historical-Cultural Investigation

Background Understanding the principles of spiritual care in end-of-life care pertaining to the Indian context is crucial for the development of an appropriate approach to spiritual care for Indian palliative care. The rich and diverse spiritual and cultural traditions around the care of the dying in the country provide useful resources for such a perception. Aims This study seeks to examine the features of the care of the dying that were prevalent in the past in South India in order to understand the values and principles of spiritual care in the care of the dying in India. Methods Taking a historical-cultural perspective, in-depth oral history interviews were conducted with thirty older adults belonging to different religions and none. Participants were recruited using purposive and snowballing sampling technique from Kanyakumari district, South India. Results Several religious and cultural care practices that were customary in the care of the dying and beliefs about good death that prevailed over a couple of decades 40 years ago emerged from the data. ‘Union with the divine’, ‘being at peace’ and ‘preserving dignity’ were the three core principles that were found to be at the heart of these practices and beliefs. All these practices and beliefs were found to have meanings and values attached to them that relate to these core principles. Conclusions Care practices around the care of the dying and beliefs about good death are clearly characterised by spiritual beliefs. Perspectives on the present Indian scenario suggest that the above said principles play a vital role in shaping the current understanding of death and ideas of good death. Considerable contextual changes in the Indian society have caused the breakdown of traditional patterns of intergenerational dissemination of these practices and their meanings making these core principles hard to achieve.