Managing Suffering at the End of Life: A Study of Continuous Sedation

Project Duration

1 January 2010 – 30 June 2012

Funder

Economic and Social Research Council (RES-062-23-2078)

Aims

Some dying people experience extreme symptoms or distress. In such circumstances, continuous sedation may be used to decrease consciousness until death occurs.

Methods

In this study we: 

• Explored the history of the practice of continuous sedation until death and the ethical challenges reported in the literature, since 1945
• Interviewed 17 doctors and 25 nurses, in the context of 22 patient case studies, to understand how they make decisions to use sedation in end of life care and how they experience their practice
• Interviewed eight bereaved relatives to understand their experience of end of life care
• Compared our data with parallel studies in Belgium and the Netherlands and undertook a secondary analysis of survey data in the three countries

Outcomes and Findings

Sedation in end of life care is associated with intense ethical conjecture. In spite of a move towards guidelines, the practice is defined in different ways, with international variation in implementation. Clinicians in the UK describe sedation as a 'side effect' of their intent to control symptoms, are concerned not to hasten death and seek to build consensus about the best path of action when managing suffering. 

UK nurses have significant responsibility for deciding when to commence medications prescribed in advance of symptoms and need education about the ethical dimensions of their practice. The Liverpool Care Pathway frames practice, especially in non-hospice settings. Bereaved relatives perceive adequate symptom control as an essential aspect of protecting the person's dignity. There are some similarities as well as important differences between UK, Dutch and Belgian practice.