We asked everyone who spoke to us for this research what message they would like to give to healthcare professionals and service providers. Common themes included the need for better support for families and patients, clearer guidelines and processes, more information, better communication and better care and resources, alongside the need for wider social changes.
There were also some big differences in the messages families wanted to send to professionals. Some people felt very strongly that healthcare professionals had ‘written off’ their relative too early. Other people felt they had been allowed (or encouraged) to have ‘false hope’ and that this had been very damaging.
When we first met Peter and Olga they were determined to bring Peter’s brother, ‘Theo’ home, and they have achieved this, and he continues to make progress. Theo is now fully consciousness, and his family emphasise the importance of hope, and are critical of doctors who did not believe in potential to recover.
Peter and Olga would like doctors to recognise that everyone is different and to allow hope.
By contrast, when we first met Fern she, like Peter and Olga, was determined her partner would progress – and was fighting to ensure his survival. Two years later, she now thinks he should have been allowed to die. She says: ‘how do you know what the journey’s going to be like at the beginning? You’ve got no idea – but they do have an idea, the doctors have an idea’. Although she does not want to ‘throw their compassion’ for her back in their faces (and understand why they responded to her pleas for more treatment) she says that doctors ‘need to know, you they can appreciate our suffering’ but ‘perhaps we’re not making insightful choices’.
She now thinks the doctors should have overruled her: ‘I think it should be a team that comes together and makes a very clear decision and there has to be something that’s put in place to say, ‘We’re doing this.’ Her message to clinicians is: ‘if you’ve got a choice to do it differently next time, maybe you should.’ (For more see Decision-making: the legal situation and clinical practice’ and ‘Family experiences of decision-making’).
Fern talks about the window of opportunity that clinicians may need to take.
Emma says it is important to try to make sure that the patient’s voice is heard.
Families emphasised the need for clear communication and clear pathways for people who have had catastrophic brain injuries. Some stressed how valuable it would be if clinicians took sometime took clearer responsibility for the decisions that are there’s in law, and many wanted policy makers to become more informed about the issues on the ground. A common suggestion for law-makers, for example, was ‘come and see the patients, come and see the families’. Several families who felt their relative would not have wanted to be kept alive long term in a vegetative or minimally conscious state also highlighted that they would like to see wider social change in attitudes towards death and dying.