Family Experiences of Vegetative and Minimally Conscious States

Mikaela

Female

Brief outline: In 2007, when he was 42, Mikaela's father fell down some steps and hit his head. He has been apparently completely unconscious ever since and Mikaela does not believe he would want to live like this. Some years earlier he had suffered a brain haemorrhage and a stroke, following which he had been left with left-side paralysis and memory difficulties, but able to live independently. Mikaela and her father were extremely close and after that incident he told Mikaela that if he had another stroke, and lost the ability to be independent, he would not want to be kept alive.

Background: Single, mother of one child, care worker.

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After suffering a brain haemorrhage and stroke in 2000, Mikaela’s father was very grateful that he recovered sufficiently to be able to live independently. But he told his family and friends that if anything similar happened again such that he lost his independence he would want to be allowed to go. Some years later, on New Year’s Eve December 2007, he fell down some steps and was left in a coma. Within a few weeks of the accident Mikaela was told that her father was in pain and that he could be given morphine although this might shorten his life. The whole family agreed with this course of action, believing her father would have wanted a peaceful death. However, for some reason, she does not think pain relief was provided, and although he was expected to die, he survived. He is now in long-term care, with a chronic disorder of consciousness, and his life is being prolonged with a tracheotomy and the provision of artificial nutrition and hydration. 

Mikaela finds visiting her father very painful. She doesn’t see him responding to anything she does or says. Although she hopes that he can hear her voice and know that she is there, Mikaela believes he is probably completely unaware of everything. She usually takes her daughter (now 9 years old) with her when she visits, and she plays his favourite music. She does not know anyone else with a relative in a vegetative state, and wants to find out whether what she feels is normal. She doesn’t understand why her father is being kept alive against his previously stated wishes. He has ‘Do Not Resuscitate’ on his notes; Mikaela and the whole family agree this is the right thing to do. However, she finds the idea of allowing him to die by withdrawing his feeding tube incomprehensible and ‘crazy’ and could not bear the idea of being responsible for such a decision. She has felt guilty for being unable protect her father from being kept alive against his wishes and feels it’s important that families are not burdened by feeling guilt about decisions that, legally, are not their responsibility.

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