Family Experiences of Vegetative and Minimally Conscious States

What is brain death?

Sometimes people are told that their relative is ‘brain dead’. This means the loss of all brainstem function. The brainstem controls breathing and other reflexes. When someone is ‘brain dead’ they have no reflexes and cannot breathe on their own. They will never regain consciousness or the ability to breathe and are considered legally dead. 

Usually when someone loses brain stem function they stop breathing, their heart stops and they are clearly dead. With modern medicine, though, it is possible to keep someone’s heart beating even though the brain stem has permanently stopped functioning. This may be done when it is not yet clear whether someone is actually brain dead or simply in a deep coma in order to allow time for this to be checked. Someone may also be maintained on medical equipment in a brain dead state in order to support organ donation. When the ventilator is withdrawn a brain dead person will always stop breathing within a short time. 

One woman we spoke to about her vegetative relative also had experience of the brain death of her husband after a stroke. She described how the doctors explained this to her and to their daughters:

“They said, ‘We do believe he is brain dead and there's a protocol where two doctors will – myself and another doctor, we will do various tests on him and then if we both have the same results and come to the same conclusion, we will recommend removing the ventilator. …So that was what happened. I mean we knew, we just knew. We just sat there and waited until they came back and he said, I’m really sorry, but he is actually brain dead.” … And they just removed the ventilator and he just lay there. And you could see – he was still attached to the monitor and you could see – And the thing was, it started slowing down and we were all holding him and everything. And then it sort of stopped and it flat lined. And you know we thought, oh God, that's it. And then it started again. And it kept doing this. So we didn’t know, we kept thinking, oh, is he or isn’t he? Oh, it was awful, it was absolutely horrible. It felt like it was about ten minutes. It was probably maybe half that…”

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