Family Experiences of Vegetative and Minimally Conscious States

Impact of visiting

Seeing your mother, partner, brother, daughter, or close friend unconscious, surrounded by machines in intensive care is profoundly shocking. Visiting them over months and years in a severely brain injured state can be even more challenging.

A few people who spoke to us described positive things about visiting - at least at first. Some valued having time to ‘say goodbye’.
Most people we interviewed spoke at length about how upsetting they found visits – especially as time went on. They made comments such as: ‘Seeing him like this breaks my heart’, ‘It seems so cruel and undignified – I dread every visit’, ‘I put on a brave face and smile and smile, but it is killing me slowly inside’.
People described how devastating it was to see someone wither away and lose everything they had once enjoyed and valued. The comparison between who someone had been, and what they had become since their catastrophic brain injury could make visiting very disturbing, and people worried that their relative, if they had any awareness at all, might have insight into what had been lost. It was also upsetting if their relative seems to be in pain or distress, and it was difficult to know how to mark special family occasions or traditional times of celebration.
When the patient is in a minimally conscious state, their reactions on any particular day can be very variable. This unpredictability can be confusing. It can take friends and family on a roller coaster ride of hope and despair. If the person has become fully conscious that, too, comes with its own challenges
Family members are often advised to try to ‘get on with your life’. But this can be almost impossible to do if the patient has some consciousness, especially if they are being cared for at home, like Theo. It can also be hard to do even if people think that the patient is unaware, or barely aware, of their presence.
Some people said they eventually became ‘numb’ - so used to seeing their relative in a vegetative or minimally conscious state that, over time, it became ‘almost normal’. They did not notice how it was affecting them – nor did they think about how the situation might be changed. Seeing their relative after being away could be particularly distressing and sometimes prompted a change of perspective. Sometimes people chose to stop visiting, deciding that visiting is ‘pointless’ if the person has no awareness, or just too painful. Not visiting, however, can be a source of guilt and conflict.
For discussion of the significance of different responses from the patient from the clinical perspective see section on ‘Definitions’.

See also ‘Messages for friends’.

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