Family Experiences of Vegetative and Minimally Conscious States

Having a relative in a vegetative or minimally conscious state is a huge challenge for families. The media sometimes focus on ‘tug-of-love’ family conflicts. In the USA, for example, the Terri Schiavo case involved a dispute between the patient’s husband and her parents and brothers who had very different views on whether or not she was completely vegetative and whether or not she should be allowed to die.

In our research we were struck by the generosity with which family members tried to do what they thought was right by the injured individual, while also supporting each other and trying to understand differences of opinion. We did speak with couples who had broken up after the injury or family members who resented one another, but there was also a great deal of mutual support, and some people felt the situation had made their relationships stronger.

Similar comments were made by other people we spoke with. Lee talked about how she and her mother moved into the side ward to care for her injured brother and were united against the hospital: 

‘I guess for me and my Mum, I think there was a pride that we were put into such a disgustingly awful situation by these people and …we did everything we could humanly do. And I think there's a lot to be said for knowing that we did our best. And that we've never stopped. But to know that you can do that as a family is very, very strong. And I think, you know, from a selfish child point of view, to know that my Mum would do that for my brother is to know that my Mum would do anything for either of us. And that's huge. That is so big. My Mum dropped everything -everything in her life she dropped for my brother.’ 

All the same it is also not surprising the family members can come into conflict – given the grief, guilt, exhaustions and frustration imposed on them by the situation. A few of those we spoke to felt other members of the family had ‘gone mad with grief’ and that their mental health issues were now a negative force. In a few cases there were different views on handling the person’s money or caring for a child now left without a mother.

Decision-making about medical treatment could also be a source of tension. Different family members sometimes take diverse views on how much consciousness the person has (for more see ‘Definitions’) and their prospects for recovery, or differ about the appropriate treatment decisions. They may also compete about whose views about treatment decisions should carry most weight. If there are different views about the right way forward it is important to explore these and clarify why there are different points of view. Sometimes it then becomes clear that family members have fairly similar views of what the person would want in the circumstances – and it is other factors that are the source of conflict.

For example, some family members may have a strong sense of what their relative may want, but others may not want the responsibility of making a life or death decision for another person or they may have strong views on the sanctity of life.
In this situation it is important to focus on what the person themselves would have wanted (and any evidence about that), not to be distracted by people’s own views about what they want or believe – it is also important that people should be allowed to ‘opt out’ of inputting into decision-making.

You can see an example of evidence that was assessed in a court in a case like this by looking at a ‘storify’ of the live-tweets from the court hearing on the cdoc.org.uk website.

It is not surprising that family members may take different views on some of these things - especially given the complexities explored in other sections of this module. However, people often tried to reach a family consensus.
For obvious reasons those who discussed family differences with us did not want video clips presented on a website, but there are lessons from their experiences that are important to share.

• Where leadership is provided by clinicians about best interests decision-making this takes the pressure off families to try to resolve their differences or compete to become ‘the decision-maker’. The responsible clinician can give every one who knew the patient a chance to have their say, and then take a decision informed by those diverse views. A good ‘best interests’ meeting will allow the clinical team to collect information about what the patient might have wanted – disentangled from some of these conflicts, and without forcing the family to battle it out. A bad ‘best interests’ meeting is where clinicians do not give clear guidance to the family about their role and fail to explore diverse views about the patient. (See ‘Resources’ for a guide on how to run a good best interests meeting, by Professor Derick Wade from the Oxford Centre of Enablement).
• It appears that some clinicians may be waiting for a possible ‘family consensus’ to naturally emerge. This is understandable as a conflict-avoidance strategy and as an effort to maintain a relationship of trust with the whole family, but is a problem, as it may compromise the need to make best interests decisions based on the person’s own values and belief in a timely manner – resulting in the patient not being treated in their best interests while waiting for a consensus view from other people. On the other hand, a family consensus might have been part of what that person might themselves have wanted. The challenge, when there is a cacophony of voices, is to ensure that the person who cannot speak for themself has their voice heard. This is why it may be useful to have an Independent Mental Capacity Advocate (an IMCA) to represent the patient in some circumstances (to learn more about IMCAs see ‘Resources’- Mental Capacity Act and Best Interests decisions).

Last reviewed December 2017.
Last updated December 2017.