Family Experiences of Vegetative and Minimally Conscious States

The law about the role of the family in decisions, and how to act in a patient’s ‘best interests’ is clear (see ‘Decision-making: the legal situation and clinical practice ’), but there was a widespread misconception among many of those we talked to that ‘next of kin’ were responsible for consenting, or refusing, treatment. In addition, although people had often come across ‘Goal setting meeting’ or ‘Discharge meetings’ they sometimes had not been invited to anything called a ‘Best Interests’ meeting and it was rare to have discussions with healthcare professionals where it was clear that ‘best interests’ and considering what the person would have wanted were the main focus of the discussion.

Some families thus experienced a lack of opportunity to represent their relative’s own wishes in relation to serious medical treatment. They had very little communication with treating clinicians at all – or meetings which did happen were simply focused on practicalities of delivering care and going through the system (e.g. move from hospital to care home). 

Sometimes it felt to families as if they had been the ones who had to instigate questions about what the patient might have wanted – or that they had tried to represent what the patient would have wanted but been ignored.

If families thought the patient would want treatment – they were often felt they had been able to insist upon this (at least once the patient left intensive care). 

If families thought the patient might not have wanted treatment - then this was more complicated. 

Even contemplating the idea, let alone raising the issue, that a patient might prefer to be allowed to die could be extremely difficult. Some of those who spoke to us were clear they could not represent the person’s views in this case. One mother of a son in a permanent vegetative state explained: ‘I would never agree to that [withholding of treatment]… no I could never give up on him. …Maybe that’s wrong or maybe it’s right, I don’t know, it’s just who I am’. She adds that even though her other son has expressed strong wishes to refuse life-prolonging treatment if he were ever in a similar state to his brother, she would not feel able to respect his wishes – ‘No, I wouldn’t give up on any of my children. I can’t think any other way’. Another mother, Helen, says that ‘for so long the only thing that enabled me to cope was telling myself that, all right, he was injured but he was still alive, he was still there.’ She gained comfort from being able to ‘hold my warm, living boy in my arms.’ It took time before she could face the question of what was in his best interests: ‘things changed, the day I had to ask myself if the maternal comfort I was getting from that was worth the price that my son was having to pay to provide it for me’. Cathy similarly spent years caring for her brother in a vegetative state – and found it hard to consider any other option apart from continuing to hope for his recovery.
Family members who had been directly asked to give their opinion of what the patient would want often found this a relief. "What would he/she want" was sometimes a much easier and clearer questions than being asked "what do you want us to do?" – and shifted the focus away from the feelings of the family member, and towards the wishes of the patient. Emma, for example, looks back on the tortuous process of trying to make decisions about her mother's medical treatment and says this whole time was very painful and confusing and was not focused on what her mother, Kate, would have wanted. She feels a direct question 'What would Kate want' would have been very helpful and might have allowed for different treatment decisions
Families often felt very burdened by thinking about life-death decision – so could feel distressed when clinicians did try to raise such issues and consult with the family. Emma says she was prepared to deal with death and sadness but ‘I did not want to deal with [decisions such as] should my mother have [stroke medication withdrawn]? You know, that was not what I wanted to be as a daughter, that was not my role.’ Angela echoes these feeling in her comments about her husband. Reflecting on being invited to discuss life-prolonging treatment for him, she comments that these are: ‘Decisions I never wanted to have to make. They’re not my decisions to make, they shouldn’t be mine. They should be his’. (This is one reason why many families who have been through such experiences are often in favour of writing Advance Decisions - see ‘Reflections on own end of life wishes’).
Nik feels very burdened by wondering whether or not life-prolonging treatment should continue for her father, and could not tolerate the idea of being responsible for withdrawing his feed: ‘if he'd have said, "Nik, yes, stop my feed." I would do it in a heartbeat, because it's his – it was his decision’, but she cannot make that decision for him herself: ‘you have to then live with that decision that you are responsible’. She was surprised to discover that, according to the law, she is not the decision-maker about her father's treatment and thinks that should be emphasised to families to ‘take the pressure off them… so it's not so heavy on them, that it's their decision.’ 

However, family members also expressed ambivalence – and concern that clinicians might over-rule families. The question of withdrawing ‘the feeding tube’ was particularly difficult.
When family members came away from meetings with clinical teams clear about their own role in decision-making this could be both threatening (fear that they might be over-ruled) and helpful (e.g. because they were clear that they had a key role to play in communicating the patient's values and beliefs). Mark, for example, was clear that he was being consulted to inform the teams’ best interests decisions. This was important to him as he felt ill-equipped to make decisions on his brother’s behalf both because he did not know his brother very well and because he was trying to take in a lot of medical information in a completely unfamiliar situation. He commented: ‘You feel like people are asking you what should they do next. And they’re not really.’ He understand that the doctors were making best interests decisions for his brother: ‘But they’re also sounding me out about some elements of that’ by asking about his brother’s life-style. 
Where people were clear they were not the decision-makers and had been informed about their role in best interests decisions this could be helpful to them, although their role could still be very challenging.
Our research with families suggests that the Mental Capacity Act 2005 is not always being effectively implemented and ‘best interests’ decisions may not be being followed in some cases. It is important that healthcare professionals take the lead in best interests decision-making (see ‘Resources and Information’ for guidance on how to run a ‘best interests’ meeting and for a booklet on the role of family and friends).

​Last reviewed December 2017.
​Last updated December 2017.