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

Public, patient and carers’ views on palliative and end‐of‐life care in India: a systematic review

Aim To systematically review the existing evidence on the Indian public, patient and carers’ perspectives on palliative and end‐of‐life care. Background With a growing population of terminally ill people across the world, there is also an increasing awareness among international health policy makers of the need to improve the quality of life for terminally ill patients. Understanding service users’ (patients, family and public) perspectives is crucial in developing and sustaining successful community‐centred palliative nursing policies and service models especially in countries like India with diverse population. Methods An integrative review was performed on five databases, using hand searches of key journals and reference citation tracking for empirical studies published in English from 1990 to 2015. A thematic analysis framework was used to analyse and identify key themes. Results Analysis of the six eligible studies revealed five themes. Themes describe how social, economic, cultural, religious, spiritual and traditional factors influenced the palliative and end‐of‐life care perspectives and experiences among Indians. They also illustrated preferences relating to place of care, as well as benefits and challenges of family caregiving during the last days of life. Conclusions Although we found minimal evidence on user perspectives, nurses need to aware of those unique components of context‐specific palliative and end‐of‐life care practices in India – socioeconomic, cultural and religious factors – on their nursing encounters. Nurses need to advocate same in policy development to enable accessibility and utility of palliative and end‐of‐life care services, which are scant in India. Implications for nursing and health policy Nurses can be central in gathering the contextual evidence that advocate users’ perspectives to inform further studies and national palliative care policies in India. Emerging policies in nursing education need to focus on integrating family‐centred palliative and end‐of‐life care within curricula, whereas nursing practice may promote nurse‐led community models to address the patchy palliative and end‐of‐life service provision in India

Challenges and Future Directions of Palliative Care

The unprecedented global development of palliative care over the past 50 years, originating in a counterculture and evolving through to an integral element of the health-care system, has enabled many more of the world’s population to have access to quality palliative care. More of the world’s population, particularly those living in high-income countries, such as Europe, North America, Australia, and parts of Asia, now die at an older age of, or with, noncommunicable diseases. The need for palliative care is also significant and largely unmet in low- and middle-income countries such as sub-Saharan Africa where communicable diseases such as HIV/AIDS, tuberculosis, and malaria continue to lead to expected deaths for many people.These new patterns of dying have implications for the configuration of international, national, and local palliative care policies, health-care service delivery models, palliative care delivery, engagement with primary and specialist clinical streams, workforce education, and the focus of future research.This chapter will describe the current and future challenges to palliative care development in low-, middle-, and high-income countries and the opportunities offered by adopting a public health approach, novel technologies, and remote monitoring and better engaging communities to increase palliative care access globally