Family Experiences of Vegetative and Minimally Conscious States

A common comment from those we spoke to was: ‘In a situation like this, you find out who your friends really are’. The message to friends and colleagues is that you can be extremely supportive, but may need to reflect a little on how best to offer support, and what is most needed may change over time.

Angela valued friends who did not quiz her and gave her a place to be herself, Imogen was grateful for the practical support from a friend's brother - who invited her to stay in a room in his house, close to the hospital.

One woman recalled how a friend made a 100 mile round trip to bring a hairbrush to her at the hospital (even though, she could, of course, have bought one in the hospital shop). The gesture was a powerful message that this friend would be there for her. Others described neighbours who would pick up a child from school at short notice or friends who took them for a night out at the cinema without badgering them with questions. Colleagues who helped cover workload were appreciated and it was invaluable if employers could be flexible. Jane was able to relocate her work to be closer to the hospital where her daughter was and says ‘work helped keep a sense of normality in my life, even if just for an hour’.
 

Being reliable about providing the support promised, available at short notice and there ‘for the long haul’ were all valued. Not everyone can offer all of this, but a good network of friends, colleagues and extended family who offer what they can helps to prevent those at the centre of the crisis from feeling abandoned and allows them to keep going.

Another key thing friends of those at the centre of the crisis can do is realise how little they know. Those closest to the patient have often been on a steep learning curve. They emphasised that it is also helpful if friends avoid asking crass questions, giving glib advice or making uninformed comment. This can mean taking the lead from those at the centre of the crisis or perhaps learning about some of the complex issues themselves. 

We asked family members to write a message on a postcard to anyone they wanted – this postcard sums up this father’s feelings about the importance of support from friends

If you are the friend of someone who has a close relative in a vegetative or minimally conscious state you might wish to explore different pages of this website – particularly the page on ‘Friendships and support to the family’ and the two pages about visiting. You might also have a look at the film on the page: 'Messages to the media' – which explains some of the problems with common understandings and representations of coma.

Last reviewed December 2017.