Family Experiences of Vegetative and Minimally Conscious States

Hope

Having a relative or close friend in a vegetative or minimally conscious state is hugely distressing. Hope was very important to everyone we spoke to. It was valued as helping people to cope and keep going in their battle to support any recovery possible – as Morag said “we just kept saying ‘where there is life there is hope’”. People defended their right to hope and were angry with clinicians who gave information with might ‘steal’ hope. Some also talked about how their hope had allowed them to not to give up on a patient who later did show signs of consciousness. Without hope people felt that the situation was unbearable. But people have different time scales for when they think ‘hope’ is justified and what to hope for. Hope was also sometimes seen as a problem – helping to trap the whole family in a hopeless situation or leading to inappropriate treatment of the patient. 

Rifat and her family gave up hope for any meaningful recovery for her father after learning that he had been without oxygen for a long time. She wishes her father had not been resuscitated and feels that he ‘really died’ in the moment of his cardiac arrest as her sister was bringing him a glass of water. Others kept hoping for many months or years – especially if they saw any signs of possible consciousness, although some worried about what recovery might mean.
Many of those we interviewed continued to have hope for their relative’s recovery several years after the original injury. 

As time goes on it becomes less and less likely that a patient in a vegetative state will regain full consciousness – but this can be complicated by the patient’s medication and dependency on different technologies (such as artificial ventilation). Families reported that they sometimes had to fight hard to ensure their relative had received appropriate care and assessment, and they wanted to be sure that hope for recovery was not abandoned too soon. (see the ‘Permanent’ diagnosis’)

When we first interviewed some people they were still fighting to ensure appropriate care for their relative to allow them to be properly assessed and were unsure what level of recovery might be possible – but when we re-interviewed them two or three years later, most felt the range of outcomes was now clear.
Peter, Olga and Andrew remained the most optimistic of those we spoke with. Their relative, Theo, had regained full consciousness since we first interviewed the family and they had fulfilled their ambition of bringing him home.
Phil spoke to us a year and a quarter after his partner’s collapse – and talks about how his hopes have changed.
Several family members talked about the danger of ‘false hope’ or wishing ‘for the wrong thing’. Media representations of miracle recoveries led Helen to believe that her son might recover despite predictions from doctors. She says: ‘we were told really right from day one there was no hope. But you know how it is. We all read these stories in colour supplements and in the newspaper about, ‘against all the odds my child recovered, my husband came round’, so none of us will give up hope until we are absolutely presented with no alternative’. 
Losing hope for the patient’s recovery can be painful – but ‘false hope’ followed by the slow loss of hope can be even worse. Cathy described this slow and painful process of hope, and loss of hope, during the years she cared for her brother and Fern talked about maintaining ‘false hope’ for too long for her partner, and what this meant.
People told us they had changed what they were hoping for – some people no longer hoped for their relative to recover minimal consciousness, or even to regain full consciousness. They feared that this could be worse than having no consciousness at all. They simply hoped now that their relative was unaware of their situation, and would soon be ‘at peace’. Repeated insistence from friends or distant relatives that ‘where there is life there’s hope’ was distressing and made them feel others didn’t understand. 

Health care professionals have a key role to play in supporting families in engaging with medical information. Families emphasised the importance of being regularly updated about their relative’s condition and likely future. The value of the family having the opportunity for regular discussion of this was particularly emphasised by those who felt they had been unrealistically optimistic. Looking back they thought that updates might have stopped them simply clinging to early statements from clinicians about a high level of uncertainty and helped them to take on board that the range of outcomes for the patient had become more predictable (and narrower) over time.

Some of those we spoke to were clear that optimism in these situations can be a positive force, but also a double-edged sword. Looking back, they felt that hope for recovery helped them fight for appropriate treatments, but it could also lead them to insist on treatments that, with hindsight, they thought were unjustified.

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