Presence of relatives during testing for brain stem death: questionnaire study

In brain stem death, where the body remains warm and pink and has a pulse and a chest that rises and falls, relatives may have difficulty accepting that the patient has died. It has been suggested that if relatives witness tests for brain stem death being performed then this may improve their understanding that death has occurred.¹ But, however careful the explanation, any potential benefit to relatives of observing testing for brain stem death may be offset by doubts caused by the movement of limbs during testing (due to spinal reflexes), which often occur when testing for cranial nerve activity (shown as facial movement) by using painful stimuli.

Despite these concerns, we occasionally allow relatives to observe testing for brain stem death because it may help some families to understand that the patient has died. As there is no evidence to support or refute this practice, we undertook a survey to establish current practice in intensive care units in the United Kingdom.

Subjects, methods, and results

After obtaining ethical approval, we telephoned 28 neurotrauma intensive care units to identify which senior staff would usually be involved in testing for brain stem death. We sent a questionnaire to the 147 consultants and 167 senior nurses identified; the response rate was 79% (116/147) for consultants and 77% (129/167) for senior nurses.

Overall, 32% (37/116) of consultants and 42% (54/129) of nurses had experience of relatives' presence during testing, and 69% (63/91) of these felt that this was helpful for relatives (table). Nurses were more likely than doctors (84% v 53%) to believe that witnessing the tests would help relatives to accept that the patient had died, and 48% thought that relatives may gain comfort from being present.

The major potential problems were cited as spinal reflexes (85%) and dealing with the relatives' distress (70%). Forty five per cent of respondents said they would be more willing to allow the presence of relatives if adequate support was available, particularly careful explanation and a dedicated person able to support the family.

Comment

Two thirds of consultants and nurses who had previous experience of relatives being present during testing felt that the relatives had benefited from this. The diagnosis of brain stem death is extremely stressful for relatives. Relatives have refused to allow ventilation to be discontinued, leading in one case to a delay of 48 hours.² Public confusion remains between brain stem death and the “persistent” (not “permanent”) vegetative state, when patients rarely regain consciousness.³

Relatives who observed cardiopulmonary resuscitation showed improved psychological outcome after three months.⁴ By contrast, testing for brain stem death is more controlled, with time to prepare relatives for what they will observe. It is possible that allowing relatives to be present may help them to understand the diagnosis and may assist the grieving process. Witnessing the first disconnection test might help relatives “understand the difference between breathing and being breathed” and may help them “accept that a declaration of death is imminent.”⁵ Coolican said that relatives should be offered a choice about witnessing testing for brain stem death and that by “participating . . . in dying or death” relatives might benefit in the control thus exercised.¹

However, testing for brain stem death was described by some respondents as “macabre” and “harrowing” and will often seem that way to relatives' families. Relatives observing testing must be capable of understanding the importance of the apnoea test and that movements that seem purposeful and involve the neck as well as the hands and the limbs are in fact only spinal reflexes. Continual explanation is essential.

At present, a minority of doctors and nurses invite relatives to observe testing for brain stem death. More may consider doing so in the future. Whether this is beneficial to these families remains to be seen. The problems associated with the presence of relatives at testing for brain stem death should not be underestimated.

Table.

Responses of consultants and senior nurses to questionnaire on the presence of relatives during testing for brain stem death^*

Item	No (%) of consultants (n=116)	No (%) of senior nurses (n=129)
I have invited relatives to be present at testing for brain stem death	22 (19)	29 (23)
I have been asked by relatives if they could attend testing for brain stem death	35 (30)	54 (42)
I have allowed relatives to attend testing for brain stem death	37 (32)	54 (42)
In my experience, attending testing helped the relatives	23/37 (63)	40/54 (74)
The presence of relatives would affect my performance	18 (16)	8 (60)
With appropriate support for relatives, I would be more willing to allow presence of relatives	35 (30)	76 (59)
If the patient was a child it would make no difference to allowing relatives to be present	81 (70)	79 (61)
Most frequently cited problems associated with the presence of relatives:
Spinal reflexes	97 (84)	111 (86)
Handling relatives' distress	84 (72)	88 (68)
Extra nurse needed for support	54 (47)	47 (36)
Verbal interference from relatives	35 (30)	47 (36)
Most frequently cited benefits associated with the presence of relatives:
Relatives more able to accept that patient has died	61 (53)	108 (84)
Relatives gain comfort from being present	52 (45)	65 (50)

^*Complete findings and questionnaire are available on the BMJ's website.