Further Information

This project provides an ethnographic investigation into the ways in which in the clinical practices of medical specialties non-life prolonging treatment and care are made possible. Today, more people than ever are living with chronic, life-limiting or -threatening diseases and are provided life-prolonging treatments by medical specialists. Despite the growing institutionalisation of palliative care, which is care that seeks to prevent and relief suffering at the end of life, as these patients become sicker, many of them are never offered the option of receiving care that focuses on pain prevention and relief solely. Instead, they are administered highly invasive, life-prolonging treatments up until the last moments of their lives. This leads to ways of dying and a death they never wished for. 

Medical sociological and science and technology studies’ research has provided much insight into the provision of health care to patients with chronic conditions, the versions of “good” medical care it incorporates, and the politics of life that it unfolds. The ideals of palliative care, such as a “good” death, palliative care professionals’ practices and constructions of expertise have also been thoroughly analysed. However, so far, few insights exist into the ways in which in clinical practices of medical specialties an administration of a life-prolonging treatment transforms into a provision of treatment and care that let life end. To date, only the emotional, institutional, financial, conceptual, and moral barriers have been highlighted. They often inhibit a shared-decision making about whether to forego or withdraw a treatment and transfer a patient to palliative care services.

To render the provision of health care more patient-centred, and to advance current debates in medical sociology and science and technology studies, the proposed project therefore asks: How is non-life prolonging treatment made possible in the clinical practices of medical specialties? In order to answer this, two case studies will be carried out. Each focuses on one medical specialty in one European country and investigates its clinical practices in, with regard to the issue, exemplary hospitals. The principal investigator zooms in on the specialty attending to young patients, paediatrics, in Switzerland. In parallel, a doctoral candidate focuses on the specialty providing health care to old patients, geriatrics, in the United Kingdom. Through participant observation, conduct of semi-structured interviews and collection of medical records, the project members will generate data on daily routines in which non-life prolonging treatments becomes anticipated, brought up, organised, or maintained. The project will be based at the Department of Sociology at the University of Zurich and generate a variety of outputs. They will range from two workshops and special issues for medical sociologists and science and technology studies scholars, to publications in highly ranked sociology and science and technology studies journals, to presentations at annual conferences of the Pädiatrie  Schweiz and British Geriatric Society. 

In this way, the project will significantly advance current debates on “good” medical care, the politics of life, and the crafting of “good” deaths in medical sociology and science and technology studies. It will generate results useful for the improvement of the provision of high quality, patient-centred care to young and old patients in Switzerland and the UK. And it will articulate how we, as patients, significant others, health care professionals, citizens and sociologists, are currently collectively crafting novel forms of good medical care, thus generating new ways of living with and dying from diseases at the beginning of the 21st century.