Transforming the Culture of Dying (PDF)

Over a period of almost 10 years, the work of the Project on Death in America (PDIA) played a formative role in the advancement of end of life care in the United States. The project concerned itself with adults and children, and with interests crossing boundaries between the clinical disciplines, the social sciences, arts and humanities. PDIA engaged with the problems of resources in poor communities and marginalized groups and settings, and it attempted to foster collaboration across a range of sectors and organizations. Authored by medical sociologist David Clark, whose research career has focused on mapping, archiving and analyzing the history and development of hospice, palliative care and related end of life issues, this book examines the broad, ambitious conception of PDIA - which sought to 'transform the culture of dying in America' - and assesses PDIA's contribution to the development of the palliative care field and to wider debates about end of life care within American society. Chapters consider key issues and topics tackled by PDIA grantees which include: explorations of the meanings of death in contemporary American culture; the varying experiences of care at the end of life (in different settings, among different social and ethnic groups); the innovations in service development and clinical practice that have occurred in the US in response to a growing awareness of and debate about end of life issues; the emerging evidence base for palliative and end of life care in the US; the maturation of a field of academic and clinical specialization; the policy and legal issues that have shaped development, including the ethical debate about assisted suicide and the Oregon experience; the opportunities and barriers that have been encountered; and the prospects for future development. A final chapter captures developments and milestones in the field since PDIA closed in 2003, and some of the challenges going forward.