Brainstem Death Testing: A Family Affair?

Brainstem death (BSD) is a difficult concept to grasp presenting families with a paradoxical death in which the ventilated patient is warm, well-perfused and, as a result of supportive technologies, appears very much alive (Doran, 2004; Edwards and Forbes 2003).   Since 1994 it has been suggested that families should be given the choice to be present at BSD testing as it may improve their understanding that death has occurred and assist the grieving process (Cooligan 1994; Pugh et al., 2000; Remijn, 2000; Doran, 2004a Ormrod et al., 2005; Komanje et al. 2012; Twali et al. 2014).  In 2009 however, Dean and Booth reported that only 6 of 48 UK general ICUs routinely ‘invited’ relatives to be present.  Within the literature it is also evident that healthcare professionals indicate a form of denial or refusal to accept that the patient is dead describing them as ‘asleep’ until they go to theatre for organ retrieval (Ronayne 2009 p.95).   Apart from demonstrating that cognitive dissonance exists amongst healthcare professionals this statement also suggests an underlying belief that organs are being taken from patients while they are still alive.  It was a similar comment by a relative, to the author of this study, which created the impetus for this project.

This qualitative study using a content analysis approach aims ‘to explore the views and perceptions of healthcare professionals regarding family members being given a choice to be/not be present at BSD testing.  Using purposive sampling and semi-structured interviews data was collected from 10 nurses and 10 consultants working within two tertiary ICUs in N. Ireland. The findings in this study indicate that healthcare professionals have different perceptions of death when reflecting on the concept of BSD.  Despite the fact that the choice to be/not to be present at BSD testing is not routinely offered to all families, the majority of participants felt this is something that should be considered in practice.   Although participants suggested that offering this choice to families had a number of perceived benefits they also expressed a number of concerns.  Each of these issues is explored within the discussion as they need to be considered and managed if families are to be offered the choice to be/not to be present at BSD testing.  Key educational and support needs have been identified to ensure that healthcare professionals have the knowledge and skills to support families, if they choose to be present at BSD testing.  Family support measures have also been outlined to reduce the risk of emotional or psychological harm in families who choose to be present.  Finally, it is suggested that if families are to be offered the choice to be present, the choice should extend to both sets of BSD tests.

It is anticipated that this study will promote further debate among healthcare professionals about offering families the choice to be/not to be present at BSD testing.  This is vital as without a more proactive approach among healthcare professionals to offering this choice to all families it is unlikely to become common practice.  It is suggested that healthcare professionals need to be braver in their communications with families if this choice to be/not to be present at BSD testing is to become a reality for all families.