Family Experiences of Vegetative and Minimally Conscious States

Fern

Female

Brief outline: In 2010, Fern was about to give birth to their first child, when her partner had a cardiac arrest that left him severely brain injured. He was only 28 years old. Fern fought hard to ensure he would get every intervention and have a chance to recover. However, she has now thinks continuing to subject him to life-prolonging interventions is cruel and pointless.

Background: mother of one daughter

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In 2010, when Fern was about to give birth to their first child, Fern’s partner became very ill from an unknown cause, had seizures and then a cardiac arrest. He was resuscitated and rushed to intensive care but never regained full consciousness. There were periods when he seemed to be making some recovery and isolated moments when he was able to utter some words – he once shouted ‘go away’, and another time called out Fern’s name.
When we first interviewed Fern in 2012 she was focussed on trying to ensure that her partner would receive all life-sustaining treatments “as long as he is fighting, we will fight with him”. She was also determined to explore all avenues for recovery – this included different experimental drug treatments and deep brain stimulation.

Nothing seemed to work – apart from his seizures decreasing the only major change has been deterioration over time. When we met with Fern again to film her for healthtalkonline in 2014 it was four years after her partner first collapsed. She now thinks that he is on the borderline between vegetative and minimally conscious and believes that ‘he has had enough’ and he should be allowed to die. Fern says she can barely remember her partner now, after everything she has been through over the last four years, and that “My most profound connection with him has come since his injuries. I love him more now than I ever did before.”

Her partner is on a palliative care pathway, but is continuing to receive artificial nutrition and hydration. Fern describes the hospice care as fantastic and feels he is now being kept as comfortable as is possible. Although he has been close to death many times, he continues to survive. Fern would like to see more accurate media images of coma and severe brain injury. She also wants to see a society that is more accepting of death and dying and does not promote life ‘at all cost’.

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