Family Experiences of Vegetative and Minimally Conscious States



Brief outline: Jim’s wife, Amber, was hospitalised with encephalitis (aged 66) and – despite treatment – rapidly deteriorated and became unconscious. Having known two people who made good recoveries from brain injuries Jim never gave up hope that Amber would recover, but was concerned that she might recover only to a quality of life that she would not consider worth living. He was relieved when she died some five to six months after being admitted to hospital, without apparently recovering consciousness.

Background: Jim was a retired engineer involved in a range of community volunteer work and campaigns. Jim died just four months after this interview on 18 July 2013 in hospital after suffering a fall. Tributes to Jim after his death praise him for his work to ensure that the voice of those who were less able, and the vulnerable, should be heard. He was actively involved in groups such as the North LinKs Seniors' Forum and Freshstart. Jim received the 2011 Joseph J Magrath OBE Award for Public Voluntary Service and the lifetime achievement award from North Lincolnshire Country Council community champion award in 2013. His commitment to contributing to this online resource for families was further evidence of his community-based values.

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When his wife, Amber was hospitalised with encephalitis (aged 66) and lost consciousness shortly afterwards, Jim was confident that he knew her views and had a good sense of what she would and would not have wanted. This is because, following the death of his mother (in 2002 at the age of 90), Jim had trained as a peer educator on end-of-life issues with Marie Curie Cancer Care. He’d done so because “I didn’t really know mother's wishes. I did know what funeral she wanted. But I didn’t know when it came to dealing with her health issues, I had no idea.” Jim believed that people should talk more about their end of life wishes, and he and Amber had discussed this extensively and had written down some of their decisions. He had a note in Amber’s handwriting saying that she did not ever want to be resuscitated, so he had no hesitation in agreeing to a ‘Do Not Attempt Resuscitation” decision. After some weeks in hospital Amber was moved to a care home. She remained dependent on artificial nutrition and hydration and oxygen 24 hours a day but Jim believed he saw small signs of improvement: “Whether that’s false hope I don’t know. But when she started making grunts and squeals as opposed to being dead silent, that was our interpretation”. Jim never gave up hope that Amber would survive, “although we didn’t know to what extent, and whether Amber would have been happy to make the most of her life in that diminished state”. Having known two other people who were “written off” but who made acceptable recoveries, he was truly uncertain as to what would be best for Amber, and asked: “when do you say ‘enough is enough’?” When she died it was a relief: “because I had doubts that even if Amber had survived if she didn’t recover 90% plus … she was such a vibrant character that I don’t think she would have been happy.” As a peer educator in end-of-life issues Jim said he saw his purpose as “going out there, talking to people, and letting them know what they could do” to support people at the end of life.” He emphasised the importance of addressing these issues long before we know death is imminent: “Because we don’t know when it's going to happen.” He wanted to see a society in which there was open discussion of these issues.


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