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This chapter examines the legal context within which decisions about the end of life are made. It argues that an ethical approach to end-of-life care must be centred on the dying person and that finding ways to ensure that this person’s voice is heard must be core to the development of legal frameworks. In this respect, the law has, to date, been inadequate. It explores the ways decisions about the end of life are made in Ireland and identifies likely changes, including an increased formalisation of dying. Drawing on experiences from the United States and the United Kingdom, it develops arguments regarding the most appropriate decision-making structures within which to consider difficult questions around end-of-life care.

This chapter discusses and evaluates the use of a learning alliance (LA) as a methodology for community engagement and capacity building through a case study examining the use of, and attitudes towards, palliative and end-of-life care services among black and minority ethnic groups in north and mid-Kent in the United Kingdom. The first section summarises the key tenets of the LA methodology before summarising the project itself and the process of implementing the LA. The final sections of the chapter discusses the formation and evolution of the Learning Alliance on Palliative Care and End of Life project, and considers what this approach added to the project in terms of inter-organisational learning, knowledge creation and dissemination.

The Conclusion focuses on debates around the end of life and transhumanist claims about the need to prolong life, in the context of debates about disability. It analyses Don DeLillo’s novel Zero K to make a series of points about cultural representation of embodiment, the end of life and disability futures.

Seventy percent of Americans age 60 or over requiring decisions about treatment in the final days of life lack capacity to make these decisions. The biggest life-and-death decisions of their lives—literally—had to be made by someone else. Loved ones hold life and death in their hands because constitutional rights of autonomy and self-determination are extended by law to surrogates authorized to make medical decisions on patients’ behalf when the latter cannot. Yet despite their critical role, we know remarkably little about these surrogates, the decision-making process they follow, the choices they make, and the challenges they face. Drawing on the stories of two families—one demanding that physicians “just pull the damn plug” and another that life support be continued despite brain death—this chapter introduces the surrogates who determine the trajectories of life’s end. Systematic observations in two intensive care units, day after day, for more than two years offer a window on how these end-of-life trajectories take shape and change course. The chapter concludes by showing how lessons from the intensive care units are relevant to future patients and their loved ones as well as physicians, nurses, chaplains, social workers, lawyers, scholars, bioethicists, and policy makers.