JC: Family presence for Brain Death Evaluation. St.Emlyn’s

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Gray679Here in Virchester we believe that families are important. Natalie has written before about the benefits of family presence during paediatric resuscitation and it’s pretty much standard practice in both our virtual paeds and adult units. There is therefore some evidence that families are perfectly capable of being present during what might be perceived as distressing events. Perhaps this is no surprise in the ED as many patients come to the ED with their family members who were present when whatever misfortune befell them took place. The practice of then throwing them out of the resus room whilst the clinicians get on with the ‘distressing stuff’ never really made much sense to me.

There is arguably a similar situation in the ICU when patients are assessed for brain stem function. Functional testing is obviously a very important and potentially stressful event for family members as the implications of the findings are profound. If brain death is confirmed then death will follow in the same way that if resuscitation fails death follows. Should family members be present during this similarly stressful time in the ICU? WOuld it help or hinder their understanding of the process and could it help or harm?

This week a paper appeared tackling this important question. The abstract from this RCT in Critical Care Medicine is shown below. If you have full access it’s worth reading the full paper.

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[DDET What kind of paper is this?] Interestingly this is an RCT, which is excellent to see. Although no medicines or devices were used in this study it is an intervention and therefore can be considered using RCT methodology. It’s perhaps not the only approach that could be taken. It would be possible to approach this question using qualitative methods if we were interested in understanding why this may or may not work, but at this stage it is reasonable to ask whether it works at all…..(Ed – you’re talking in circles, get on with the paper and tell us what they DID do) [/DDET]

[DDET Who was studied?] Brain_herniation_MRIThis study was conducted in the ICU’s of 4 US hospitals and randomised patients families undergoing brain stem testing to presence or no presence during brain stem testing. Patients were aged >17 and undergoing brain stem tests. Families were assessed in two principle ways.

  • An ‘understanding brain death’ score
  • A psychological well being follow up at 30 and 90 days.

Family groups were randomised between being present during testing, or not being present. Those present during testing had a trained chaperone with them until the evaluation was complete. [/DDET]

[DDET The main results] The headline figures in this study are that the authors did not identify any significant differences in psychological well being between those present and those absent during testing. They did demonstrate that understanding of brain death improved if family members were present.

There are few caveats that we need to consider with these findings.

  • This is a small study with only 30 families approached of which 13 families participated. These are small numbers with a total of 58 subjects in total. If we don’t find differences that may just be down to sample size. A significant proportion (30%) were lost to follow up.
  • Over half the families declined to participate and that’s interesting to know why? I wonder if they had a preference for either treatment arm.
  • The difference in understanding between the groups is no surprise as the intervention group will have seen and experienced the testing process. This is still an interesting outcome, but it’s no surprise really.
  • The findings suggest no difference in psychological morbidity, but I would still want to know more about what they ‘though’ about it. That would require a more qualitative approach. That might be difficult around such an emotional and traumatic event but perhaps we will hear more in the future.
  • Lastly, we do not know what the clinicians thought of this. Were they inhibited by family presence and did it affect their practice? [/DDET]

[DDET What are the implications for us?] This is a small study and we really cannot consider the results to be definitive. However, it is a worthy question and should provoke discussion amongst critical care teams. I would love to hear of any views on this through the comments sections on the blog.

I do think that we can draw links between this study and the previous work on parental/family presence in the resus room. That evidence suggests that it does no harm and may do some good. At St.Emlyn’s we believe that openness and transparency in what we do are essential components of good communication, there is then arguably a good argument that family presence during brain stem testing is something that can be offered to families in critical care environments. [/DDET]





Cite this article as: Simon Carley, "JC: Family presence for Brain Death Evaluation. St.Emlyn’s," in St.Emlyn's, December 30, 2013, https://www.stemlynsblog.org/jc-family-presence-brain-death-evaluation-st-emlyns/.

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  1. Pingback: When to withdraw resuscitation in the Emergency Department. St.Emlyn's with Richard Taylor. - St.Emlyn's

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