Family Experiences of Vegetative and Minimally Conscious States

Craniotomy and craniectomy

A craniotomy is the surgical removal of part of the bone from the skull (the bone flap) to expose the brain. In craniotomy it is temporarily removed, then replaced after the brain surgery has been performed. A craniectomy also involves removal of a portion of the skull but in this case it is not returned. This is done if the brain is too swollen or if the skull bone flap cannot be replaced for other reasons (e.g. infection). ‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬

Swelling in the brain after traumatic brain injury can cause additional damage when pressure builds up in the brain as it is compressed against the skull. Although it is a controversial surgery, some research suggests that this additional damage can be reduced by allowing the swelling brain space to expand by removing part of the skull (a 'decompressive craniectomy').‬‬

•    Some of the families we spoke to were very pleased that the operation had been done, believing it had reduced damage.
•    Others wished the operation had not been performed, believing that, without it, their relative might have died. 

Sometimes surgeons may have operated, but then be unsure about whether or not this was the right thing to do. The surgeon who operated on Kevin and Miggy’s son told them he wasn’t sure whether he had made the right decision when he intervened to save the boy’s life.



Those who wished the operation had not been performed – were usually taking this position with the benefit of hindsight. The people we talked to had relatives who had poor outcomes after their craniectomy/craniotomy (because our focus is on vegetative and minimally conscious states). The views discussed here do not necessarily reflect the experiences/views of other patients’ families (such as those where the patient had better cognitive recovery after a craniotomy, or those who died).

Regardless of their view about the value of the operation, the people we interviewed often described how shocking it was to see their relative with part of their skull missing.

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Sometimes, like with Lee’s brother, the operation was conducted in an emergency before it was possible to consult with the family. But many of those we interviewed were involved in some discussion about the operation – whether they felt ‘just told it was going to happen’, ‘consulted’ or ‘asked for consent’. Mark’s account shows that he was involved in a clear ‘best interests’ process where the doctors tried to weigh up clinical information alongside what Mark could tell them about his brother.
Families who felt it would have been better if their relative had died often regretted the craniotomy/craniectomy as a major intervention. This operation (along with resuscitation, tracheostomies and ventilation) was seen as one of the key interventions which might have prevented a more timely death.
Clinician needs to think carefully about how to approach families when considering a craneotomy. For example, family members’ instincts are often to say they want their relative to live, whatever their condition. But the key questions clinicians should be asking themselves – and asking families to reflect on - is what the person themselves would want. Henry Marsh, is a very experienced neurosurgeon and author of the book ‘Do No Harm’. He describes how he invites families to consider what they think the person themselves might want, to help him decide whether or not he should operate.
Neurosurgeons have different views on what should be done – especially when there is some uncertainty about the outcome..  Some clinicians would always err on the side of saving life if they thought there was a chance of meaningful recovery. By contrast, Henry Marsh, believes that his colleagues in neurosurgery need to be more aware of the profound neurological disabilities that result from some of their decisions to intervene. He argues that sometimes it is right not to intervene, even if clinicians are still uncertain about the outcome He comments, that in some circumstances, ‘I think we do need to accept that death is often a good outcome.’

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