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Research project: Managing suffering at the end of life: a study of continuous deep sedation until death

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Some dying people experience symptoms of pain and suffering in the last hours or days of life that do not respond well to conventional therapies. In such circumstances, doctors may give the person sedation so that they go into a coma until death occurs. This practice is known as 'continuous deep sedation until death' or as 'palliative' or 'terminal' sedation among clinicians.

Good practice guidelines recommend the use of sedative drugs based on valium based mixtures. The practice is a standard procedure for the management of patients with serious symptoms immediately before death across Europe. However, there are many debates about its definition, what drugs should be used or what the criteria should guide its application. Clinical reports show that the practice is applied in different ways in different settings of care. There is little knowledge about the decision making process at the bedside of patients who need such procedures, or how the treatment relates to other critical issues of end of life decision making such as: the use of tube feeding and gaining consent. An important focus of debate concerns the differences and similarities between 'continuous deep sedation until death' and euthanasia. Across Europe, the law surrounding end of life care has developed in significantly different ways.

For example, euthanasia (at someone's competent request) is now legally permissible in the Netherlands and in Belgium, but illegal, although subject to fierce debate and a review in the UK. There are some figures from research which suggest that the use of 'continuous deep sedation until death' may be used as a 'substitute' for euthanasia in some cases. Our team of social scientists and clinicians with expertise in end of life care research are studying this issue since it will shed light on some important aspects of care of the dying about which little is currently known.

This study aims firstly, to study how the technology of continuous sedation until death has been reported in the clinical and bio-ethical literature since the Second World War and how it relates to wider debates in Northern Europe about euthanasia and other ethical issues in end of life decision making, and secondly, to explore decision-making surrounding the application of continuous sedation until death in contemporary clinical practice, experiences of clinical staff and decedents' companions of its use and their perceptions of its contribution to the management of death.

The study comprises two part. Part 1 includes firstly, a review of two bodies of literature: i) clinical research and practice; ii) ethical, social science and philosophical, and secondly, a secondary analysis of an existing data set comprising surveys completed by 3,733 UK medical practitioners about their end of life practices (Seale). Part 2 involves a series of 30 case studies using qualitative methods to interview staff and relatives most closely involved in the care of decedents who received continuous sedation until death at home, in hospital or in hospices and a review of existing policies and guidelines about the practice. We will look at each decedent's notes to understand how the practice was used and described. Up to 90 interviews will be completed, although each case will vary in terms of completeness. Interviews with the bereaved person will take place at least three months after the death and will involve a sensitively drafted letter of invitation from the physician sent on our behalf. Data collection will take place in Nottingham and Lancaster. Parallel studies are taking place in Belgium and the Netherlands which will provide added value and permit cross cultural comparisons of research

Project team

Seymour J, University of Nottingham (Principal Investigator) Addington-Hall J, 
Brown J (University of Nottingham), Seale C (Queen Mary, University of London), Payne S (Lancaster University), Smithson H (University of Sheffield), Mathers N (University of Sheffield)

Project funder

Economic and Social Research Council (ESRC)

Associated research themes

Palliative care.
Investigating need for, the organization and delivery of care.
Decision-making
Ethics

Related research groups

Complex Healthcare Processes
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