Family Experiences of Vegetative and Minimally Conscious States

The experience of having a relative with severe brain injury informs people’s thinking about their own end of life wishes. It also highlights the importance of discussing views about death with family and friends.

A few people we spoke to thought it would be difficult to know what the right way forward would be if they were ever in their relative's situation. Olga (whose brother-in-law recovered consciousness) thought any decisions should be left in the hands of God. Jim, (whose wife died several months after her brain injuries) is in favour of thinking ahead but thinks that it is hard to predict what will be right for you at the time and there might be unexpected recoveries.

Most people we spoke to were adamant that they would not want to be kept alive if they were ever in the same state as their relative. Fern and Emma would both refuse tube feeding rather than be sustained in such a condition. Both women also think that it is a very difficult decision for someone else to make, so they want to be clear that it is their own wish that they be allowed to die in this way if necessary.

Having a relative in a disorder of consciousness prompted family members to talk to one another about what they would want. 
Even when families believed they knew what their relative would have wanted, this was not always accepted by medical professionals.
Some relatives had discussed their wishes after having experienced an earlier less disabling brain injury - realising that a second incident might leave them further disabled and unable to make their own decisions at the time.
David and Olivia talked about the value of having end-of-life wishes documented in a form that you could show to professionals in a best interests meeting. Although David’s mother had expressed clear views to them in advance of her injury they had nothing in writing. They both intend to write Advance Decisions themselves.

One woman we spoke with showed us a letter that her relative had written before an operation saying that if anything went wrong he did not want to be kept alive with a feeding tube. His letter was very important in representing his wishes and clinicians took it very seriously. It also helped her: “The fact that he’d written what he wrote helped you cope with it in your head because otherwise it would feel more like it was your decision.” 

Cathy would not want anyone she loved to go through what her brother went through. Nor would she want to go through it again herself. She has written an email to her mother to provide evidence of her own wishes.
Unfortunately none of the patients had written a valid and applicable Advance Decision (a “living will”). This was a fact which some families bitterly regretted. An Advance Decision is a formal document (with a signature from a witness) setting out your end-of-life wishes. It allows you to set out what treatments you wouldn’t want in case you become unable to make decisions for yourself in the future and it is legally binding. This means that a doctor or healthcare professional is bound by law to follow the decisions set out in your form.

Gunars and Margaret have both been influenced by what they witnessed to draft Advance Decisions. They have very different wishes but both believe it is important to record them in a legally binding form. 

For information about how to write an Advance Decision refusing treatment see Resources.

Last reviewed December 2017.