Emma

Emma’s 70-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 3 years without ever regaining consciousness.

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 3 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 4 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 (the doctors) 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-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 believes that we need to be less fearful of death and that it is very important that doctors provide leadership in ensuring that the patient’s own wishes are factored into decision-making about life-prolonging treatment.

Emma says it is important to try to make sure that the patient’s voice is heard.

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She could not contemplate withdrawing artificial nutrition and hydration as she saw that as an active decision to make her mother die. However, Emma did agree to withdrawing stroke medication.

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If clinicians had asked Emma “What would Kate want” she feels different decisions might have been possible, and it would have relieved her of responsibility.

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Emma’s mother died after her body shut down’ and the feeding tube was no longer effective she found her mother’s withering away’ very distressing.

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Emma was pleased to be able to organise a lovely funeral for her mother, and then felt her own life could start again.

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Emma reflects on the decision to insert a feeding tube into her severely brain injured mother. This kept her alive in a vegetative state for several years.

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Emma’s relationship with her mother before her injury had been difficult. Although, seeing her mother in a vegetative state was distressing, Emma valued being able to visit her mother and talk to her.

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Her mother always appeared calm and did not develop physical complications. Emma felt her mother looked serene and liked visiting, although she was always left feeling unfulfilled.

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Emma is very burdened by feeling she became the decision-maker in relation to her mother’s medical treatment.

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Emma is clear she would not want to be in that situation, and that it should be her own decision.

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Emma could not process what the clinicians were saying.

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