Family Experiences of Vegetative and Minimally Conscious States

Gunars and Margaret

Male

Brief outline: In 2008, at the age of 53, Gunars’ sister, ‘A’, had a brain haemorrhage and never regained consciousness. She was eventually diagnosed as being in a permanent vegetative state. In 2013 the Court of Protection declared that it was lawful and in A’s best interests to have artificial nutrition and hydration withdrawn. She died later that year.

Background: At the time of the injury Margaret was a long-term friend of Gunars’ and has since become his partner. Gunars (aged 61) was a senior local government manager and Margaret (aged 67) worked in management development training. They are now retired.

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In 2008, at the age of 53, Gunars’ sister, ‘A’, had a brain haemorrhage and never regained consciousness. She was kept in this state for four and a half years, with a tracheotomy in place and dependent on artificial nutrition and hydration. ‘A’ was a very active, independent and dignified woman – a ‘matriarch’ at the centre of the family. Gunars and Margaret believe that, although she received excellent physical care, she would never have wanted to be sustained in this state. Her body became very contorted and would go into spasm and the years of seeing her in this condition were very tough on the whole family. 

They are dismayed by how difficult it was to find out what could be done about A’s situation, and how little information they were given by treating clinicians. This was a situation new to all involved and there was no framework or strategy for anyone to work with. They only learnt about the term ‘permanent vegetative state’ from a newspaper article about Helen and her son, Christopher, (see Interview with Helen). The family had to take the initiative to get a formal diagnosis, and they experienced long delays and lack of understanding. They report a lack of joined-up thinking across different organisations as they attempted to find a resolution. A very difficult situation was made much worse by the lack of a good system to address the problem and Gunars and Margaret would like to see a quicker and more efficient process to ensure that best interests decisions are made in a timely fashion. They would also like more information made available to family members to help them to be involved as equal partners in the decision-making process. 

In 2013 the family initiated and then supported an application from the NHS Trust to the Court of Protection for a declaration that it would be lawful and in A’s best interests to have artificial nutrition and hydration withdrawn. The declaration was approved and ‘A’ died later that year. Although they believe that letting ‘A’ die following withdrawal of artificial nutrition and hydration was the ‘least worst’ option under current legislation, they would like to see a change in the law to allow patients a more dignified death. 

Gunars and Margaret both now have strong views about their own health care at the end of life. Neither would want to be maintained in a PVS. They are both planning to write formal Advance Decisions refusing treatment if they were ever to be in such a state.

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