Family Experiences of Vegetative and Minimally Conscious States

Sonia

Female

Brief outline: Sonia’s mother had a devastating stroke in 2005 (when she was in her 60’s) - she appeared initially to make some recovery but a few days later had major swelling of the brain. Clinicians rang her family telling them her life was in danger and a decision was made to do a craniotomy. An early bout of pneumonia was aggressively treated, but when pneumonia developed again the decision was made to keep Sonia’s mother comfortable but not treat with antibiotics and her mother died in 2007.

Background: Sonia is 45.

Audio & video

Sonia’s mother had a devastating stroke in 2005 (when she was in her 60’s). She appeared initially to make some recovery but a few days later had major swelling of the brain. Clinicians rang her family telling them her life was in danger and a decision was made to do a craniotomy. After the operation she appeared to have significantly more brain damage but again appeared to have potential for improvement - she appeared confused but was able to say some words. She could not swallow and had a catheter and tracheostomy and feeding tube and needed manual evacuation of her bowels. After a few weeks a family case meeting was called and the family were informed that the rate of progress was too slow so no more physiotherapy would be provided. Her mother would be discharged into a high dependency care home. The family felt her mother’s specialist medical needs were so high she would be at risk outside the hospital setting so the family fought for her mother to stay in hospital. 

An early bout of pneumonia was aggressively treated, but when pneumonia developed again the decision was made to keep Sonia’s mother comfortable but not treat with antibiotics and her mother died. Her mother’s eventual death from untreated pneumonia was not a ‘good’ death and Sonia compares what happened to her mother to what happened to another relative who had had a massive stroke a year earlier, and had been allowed to die within a week with treatment not offered.

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