Family Experiences of Vegetative and Minimally Conscious States

Mark and Helen


Brief outline: On 10th March 2011 Mark’s brother was hit by a car while cycling. Three years later, Mark and Helen have not yet been given a definitive diagnosis or prognosis but are hopeful that he may still recover sufficiently to a life that he would consider worth living. Mark is not sure whether or not, or to what extent, his brother is aware of himself or his surroundings, or whether he will ever become so, but in the meantime he is trying to ensure that his brother gets the best possible medical care.

Background: Mark (aged 56) and Helen (aged 54) are a married couple. Mark is an arts centre manager and Helen works in retail.

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Mark’s brother was knocked off his bike by a car about 3 years ago. Mark reports that his brother had two craniotomies and part of his brain was removed, and he had a cardiac arrest after the second craniotomy and was resuscitated. He remains with a tracheotomy in place and dependent on ANH (artificial nutrition and hydration), and oxygen supplementation at night. His level of consciousness, if any, is unclear. At the early stage there was some discussion about whether or not ongoing treatment was appropriate. Different opinions were expressed: “You can talk to one consultant and come out quite hopeless, but then talk to another consultant who is hopeful”. Mark and his brother were not very close and he does not know what his brother would want in this situation, so Mark quite reserved about his input into decision-making: ‘If I knew what his views were, that would be different”. He believes that his brother may recover enough consciousness to make his life worth living.

Mark was relieved to discover that it was the clinician’s responsibility to decide what was in her brother’s best interests and not his role as a brother. He says that the best interests meetings have been very good – although “you almost feel they are asking you whether they should do something to keep him alive or not. But really what they are trying to do is formulate an opinion and some are very stark about what they say”. Mark’s brother has had recurrent infections which is making accurate diagnosis difficult – but he is receiving excellent care and the family have a case worker which makes dealing with financial and legal arrangements and organising things about his care easier. Mark and Helen are surprised by how long things have gone on: “three years later we are still here”. They are also surprised by how little seems to be known about brain injury: ‘We can put a man on the moon – but we know so little about the human brain.’ Hospitalisations are difficult and the system does not seem to be able to cope with his brother’s need and his brother often returns to his long term care placement with problems such as bed sores. Mark feels his brother could have easily died but “while he’s prepared to fight to live I need to fight on his behalf”. His brother does not appear to be in any pain or distress so this is a reasonable “holding position”. The long-term care home is providing dedicated care, and contact Mark when there are infections or when the feeding tube falls out to discuss best interests – and Mark is in favour of basic maintenance continuing at this point. He might agree with the withdrawal of treatment in the future, but feels it is too early to consider it at this point in time. One thing he is very clear about is that he does not want his brother to die alone. He hoped, and still hopes, there may be some quality of life in the future, however limited, but he finds supporting his brother very time consuming and now worries about his brother outliving him and the burden this will leave his wife. He and Helen have not talked a great deal about the effect of the situation on themselves, and were glad to have the opportunity to reflect on what had happened over the last three years.

Mark’s brother, Paul, died suddenly but peacefully on 30th June 2014 after two an a half years in hospice care.


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