The 'window of opportunity' for death after severe brain injury: family experiences

Sociol Health Illn. 2013 Sep;35(7):1095-112. doi: 10.1111/1467-9566.12020. Epub 2012 Dec 20.

Abstract

This article builds on and develops the emerging bioethics literature on the 'window of opportunity' for allowing death by withholding or withdrawing treatment. Our findings are drawn from in-depth interviews with 26 people (from 14 different families) with severely brain injured relatives. These interviews were specifically selected from a larger study on the basis of interviewees' reports that their relatives would not have wanted to be kept alive in their current condition (e.g. in vegetative or minimally conscious states). Our analysis tracks the decision-making processes that have led to the situation in which life-sustaining treatments continue to be delivered to these patients--maintaining them in a state that some families describe as a 'fate worse than death'. We show how the medico-legal 'window of opportunity' for allowing the patient to die structures family experience and fails to deliver optimal outcomes for patients. We end with some suggestions for change.

Keywords: brain injury; death; ethics; minimally concious; vegetative; window of opportunity.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Attitude to Death*
  • Brain Death*
  • Decision Making
  • England
  • Family / psychology*
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Time Factors
  • Withholding Treatment / ethics*