Family Experiences of Vegetative and Minimally Conscious States



Brief outline: Emma’s seventy year old mother had a stroke, followed by a brain bleed. The intensive care consultant said there was nothing that could be done for her mother, but Emma could not accept this. A decision was made to insert a feeding tube and Emma’s mother survived another three years without ever regaining consciousness.

Background: Emma is married with two young adult children.

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When Emma’s mother was 70 she had a stroke, followed by a brain bleed. The intensive care consultant said there was nothing that could be done, but Emma could not accept this. She was determined that her mother must recover: “I just thought, ‘no, of course it can be fixed, there’s amazing things you can do … A man is on the moon, you know’.” She also feels there were some aspects of what doctors were telling her that she just did not want to take on board: “it was an ostrich thing I think, I didn’t want to know” and she also desperately wanted to make the “right and moral” decision, so felt compelled to insist that her mother’s life must be preserved.

A feeding tube was inserted and artificial nutrition and hydration initiated. This is a decision which seemed very minor at the time, but is now hugely significant in Emma’s eyes as it was this simple act that “meant the different between life and death”. Emma’s mother survived another three years without ever regaining consciousness. Emma does not think her mother had any awareness at all, and believes that she would not have wanted to be kept alive in such a state. However, she found it cathartic visiting and talking to her mother in the care home, and wonders whether her mother might have been able to hear something. 

The regular journey to visit her mother in the care home was a four hour round trip. Living that far away was a frustrating because: “I wanted to be at her beck and call … simple daily routines, washing her, her hair, flowers in her room - but over time the care is taken over and you become a family visitor”. However “the drive down and the return was a blessing. I had time to prepare before seeing her …and driving back, dissecting the thoughts I had. It was a thoughtful and sometimes a sad journey; assemble the muddle and walk through the front door of my house, calmer at least!”.

Although Emma values the process she has been through during this time, she also feels very confused and found the whole experience profoundly shocking and disempowering. She carries a heavy burden about her role in making decisions about her mother’s treatment. On the one hand: “I think as a family you still want to have some degree of ownership”, on the other hand she wishes that doctors had made it clear that they were the decision-makers. She feels that if the doctors had taken responsibility for refusing to provide life-prolonging treatment to her mother then she could have gone along with that. Looking back she also thinks “I probably would be braver now” and considers “quality of life as opposed to keeping that person alive at all costs”. She emphasises the importance of thinking about what the injured individual would want and confronting the fact that there is “no happy ending”.

Her mother eventually died when her body “closed down” and the feeding tube was withdrawn. Even though her death was a release and Emma was very thankful that it was over, she found the manner of her mother’s death very distressing. She compares her mother’s end-of-life to the way in which her father died – “he was in the garden, he had a stroke and he died, and that’s what should happen…my mother didn’t have that dignity”. 

Emma organised the funeral just as her mother would have wanted it. She was then able to move on with her life. She believe we need to be less fearful of death and that is it very important that doctors provide leadership in ensuring that the patient’s own wishes are factored into decision making about life-prolonging treatment.


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