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Family Experiences of Vegetative and Minimally Conscious States

Family unity and differences

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.
 

David and his wife feel their love for one another has increased because of what they have been through and they are proud of how the family stuck together - as his mother would have wanted.

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How has it changed you as a family, as a couple?

David: Well—

Olivia: We think we can survive anything.

David: Yeah, there’s—

Olivia: We’re indestructible now.

David: Yeah, I think it stalled our lives for a while, it stalled – obviously, you know, mum was the matriarch as we say. She led us. If mum said you’re coming to tea you’re coming to tea, there’s no yes or no or I’m not, I’m doing this. But as a unit we all stuck together and that’s been our strength throughout it really.

David: But yeah, like I said, anything that’s thrown at you now you kind of look, is it as bad as that? No. Nothing really daunts us now [laughs].

I’ve talked to other families who’ve been torn apart by this, and couples who’ve separated over this. I mean, the pressure is huge, isn't it?

David: Hmm. If anything we found more strength and respect, you know, for what [my wife] did for my mum is like, you know, unbelievable. You couldn’t, you couldn’t ask more and probably love each other more than we ever did, you know. We’ve lived it together and been through it, you know. 

Olivia: I think we’re lucky as well, we’ve got a lot of very supportive friends.

David: Yeah.

Olivia: We’ve got a lot of friends who are health professionals, so we could go to them and ask for advice and ask their opinion. And that was probably—

David: Like I say, it’s just self-educating really [laughs]. To get ourselves in the right position and get the right thing done, you know, sometimes. But, yeah, like I say, I think having good friends as well just to – just to be able to pour your heart out to them and cry to them and, and then, you know, get up and get back on with it, you know. So yeah, it’s been important, definitely. And to stick together as well. You know, that’s another thing Mum would have definitely wanted, was us to stick together as a family unit and carry on.
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.
 

Rifat’s extended family have different views on whether or not her father is conscious and she feels that, as a daughter, she is not in a good position to lead decisions.

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So some of our family members were seeing lots of hope. That yes, we have seen brother opening eyes, we have seen – but there is no look into it. We have seen – we twisted his finger and he took his hand... so you really need to come to a certain common ground to take a decision. But it is absolutely really, really odd that when immediate family members were – you know, they had this view that we should not have the life support, because it is mostly the immediate family members who do not want to take it on. Because we knew, we studied, that it will not get much better. But what to do, what to do? And then you’ll always have to listen in one way or another that, “Well, they did not even try, they did not try long enough,” you know. 

Because I think as well as cultural issue and big family issue, I think here is a gender issue. We all were sisters, daughters need to be emotional and daughters should not take the final decision. People do take – I’m not saying that no families the daughters take… But as I say that, we were very firm on the third day when we all sat down and we said that we were going to take it off. And I was the one who said that. And it was on the third day that I’m going to sign and let him go. But as time passed and… and again daughters should always consult uncles and aunties, husband, everybody, that is one thing. So we could not be firm. It is not possible. Because then- And my mum was very worried that if we take a decision then some people might say that we killed my dad. So my mum was like, “No, no...” as I told you one day I was very frustrated, I said that I don't care, I’ll just go and tell the doctor. My mum was like, “No, no, no, you should not do anything, you go back and you carry on, we will do – let other family members take the decision.”

And I do think that if similar thing happened to my husband’s father, my husband is the eldest son, and I think that if he took the decision that I don't want to keep my father like that everybody would have accepted it. 
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.
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