Family Experiences of Vegetative and Minimally Conscious States

Friends and visiting the patient

Sometimes it is friends, rather than family, who may have the closest relationship with the patient, and know them best. If this is the case then it is important that friends are involved not only in visiting the patient, but also in contributing to best interests meetings. If you are a friend who has this role in someone’s life, you will find it useful to look at the section on ‘On-going Decisions’. Although we use the term ‘family’ throughout this section we do not mean just biological family or someone with a formal family relationship with the patient (such as a spouse) – if you are very close to the patient then please read the term ‘family’ as meaning you.

Visiting the patient is another important thing that friends can do. However, friends, just like any family member, can find visiting someone in a vegetative or minimally conscious state very challenging (See ‘the Impact of visiting’) – they do not know how to be around the patient, or what to say, and find it very distressing to see them.

The role of friends in visiting the patient (or not) was sometimes a source of conflict for those we interviewed - especially after the situation had gone on for a long time 

Kate feels their old family friends find it hard to understand, but feels very supported by a friend who goes in to the care home once a month to cut her husband’s hair:
 
“Yeah, they don’t really know, they’ll say ‘how is Keith?’ and I’ve explained about vegetative states and that kind of thing but I don’t know if they really know what it means. My other close friend goes to see Keith once a month and cuts his hair for him, so she knows what he’s like. Keith’s friends I think should really hang their heads in shame, really do. That’s a sore point. I think a couple of them have been to see him once or twice. One of them said, you know, ‘it’s so hard’. I just lose my temper when them really and say ‘it’s not about you, it’s about doing something for Keith, and if you can’t bring yourself to do that...’ …So yeah, his friends have let him down I think”.

It often seemed as if individual friends drifted away – whereas groups of friends sometimes found effective ways of offering on-going support. One man felt very supported by the fact that members of his wife’s choir took turns to sit with her for a couple of hours on a Thursday night. Another was delighted by regular visits from members of his son’s football team - the young men came in pairs to visit his minimally conscious son, creating a playful atmosphere and joking with one another in front of him – conveying a sense of normality. Such on-going support was very much valued.

Sometimes family members felt that friends had visited when it was ‘exciting’ and they wanted to try ways of ‘waking up’ the person, but then drifted away when the situation dragged on.

‘Everyone thinks there is a magic answer – and they want to be the magician. One of his friends bought in an electronic key-board determined that would be the way of communicating with him, another tried with a guitar – but after a couple of attempts gave up. They don’t visit anymore. Who wants to visit someone like this? Who wants the hard grind of what ever rehabilitation means in this situation?’

Although some people felt their relative had now been ‘abandoned’ by their old friends, others did not think their relative would want anyone outside the family to see them in their current condition, so discouraged visitors. They were also sometimes upset by the sort of things friends would say after visiting the patient.
It can be very difficult to find a way of continuing to be in someone’s life if they are totally (or mainly) unresponsive, and difficult to know what to say to that person’s family. Friends can, however, play a key role - and, if the person does regain some consciousness, on-going friendships may be very important to them.

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