Caring at home
Some of those we spoke to would love to take their relative home - they hate leaving them 'in an institution' or hope they might...
Recovery from a vegetative or minimally conscious state
Most of the people who spoke to us had relatives who remained in a vegetative or minimally conscious state (or died without ever regaining full consciousness). In some cases, though, the patient regained full consciousness.
- We spoke to a couple of people whose relative had recovered consciousness very early on after injury – within a few weeks. Although still brain injured, these relatives were now able to communicate, eat and be semi-independent. (See our section on– ‘Londoners’ experiences of life-changing injuries’ for examples of what recovery can mean for patients who ‘wake up’ relatively soon).
- We also talked to some people whose relative had recovered full consciousness even though they had been first vegetative and then minimally conscious for a much longer time.
The length of time someone has been in a coma-like state is one crucial predictor of recovery potential. The range of possible outcomes narrows in the early weeks, but doctors often say “only time will tell” where the patient will be along a spectrum of disability.
The general rule is that most recovery will happen within the early months and that people who have been vegetative for a long time have less potential for recovery than those who have been minimally conscious (for more see our section on ‘Definitions’). In addition those with oxygen deprivation (‘anoxic’) injuries generally have worse outcomes, and these are easier to predict early, than those with ‘traumatic’ injuries.
All the same, some patients do recover much better than expected. We talked to one woman whose son was misdiagnosed as vegetative, and she talked of her pride in him for ‘proving the NHS wrong’ as he continues to make progress and she believes is now emerging from high level minimal consciousness into full consciousness. We spoke to another family who say they were told that their brother/brother-in-law would “always be a vegetable”. He is now living at home with his family, who are very pleased with his progress.
Theo can show emotion and understanding, he sometimes tries to talk and, can communicate discomfort.
Theo shows affection, can read short sentences, recall things from the past and communicate key needs. His family has faith that one day he may be able to speak.
Theo can enjoy playfully arm wrestling with his brothers. He is able to read short sentences, and be helped to choose his own clothing.
Theo can become frustrated – and seems upset about not being able to walk or talk, but his family have ways of calming him down. For example, Theo enjoys looking at photographs.
Although Theo is now fully conscious he requires 24/7 care and cannot be left alone. He has pulled out his tracheostomy tube, and sometimes his brother feels that Theo does not want to live.
You can find stories of “miracle recoveries” in the media. But for most people who have been in a disorder of consciousness for months or years, recovery is very limited. Some families celebrate their relative’s progress, however small. Others find it very distressing even (or sometimes especially) if the person does recover full consciousness. They are shocked at the contrast between how they had imagined ‘recovery’ and what it means in practice, and they feel that the person they knew before the injury would never have wanted to live like this.
A daughter said of her mother: ‘It’s not like in a film, there was a gradual pretty horrific awakening where she sort of slowly started emerging. Physically and mentally unrecognisable from what she’d been before’. A partner said of his girlfriend “I didn’t realise how dependent she would be …And I didn’t actually realise that she wouldn’t eventually be able to go to the loo herself. …And she’s lost her speech too. And I never imagined she wouldn’t be able to eat. I never imagined she would be fed through a tube”.
How the person feels in their current state appears to be variable – and not necessarily related to ‘objective’ assessments of their level of functional recovery. Some people can be appear relaxed and content even in a state only just above minimally conscious, others, with much ‘better’ recoveries, can appear often angry and distressed. We spoke to some people’s whose relatives were not in comas for very long, and made reasonably functional recoveries.
Henrietta’s sister was ‘a wild child’ who was fiercely independent before her riding accident and would have been horrified by living in a care home.
“I think if [my sister] knew this was going to happen to her, I think she’d have had a huge tattoo across her chest and said: ‘Do Not Resuscitate’. And then she could have just died quite gracefully, on the field, after flying through the air with her hair wafting in the wind on the back of one of her favourite horses. I think [she] would be really quite honest with the fact that she wouldn’t want to be here. And if she knew that – ‘At the end of next week you’re going to have this massive horse riding accident, what do you want?” She would say, ‘Don’t go there’. And she would have it tattooed in very big letters: Do Not Resuscitate.”
Contrary to expectation, however, Henrietta’s sister seems quite content in her current state – not least because her memory seems to have been wiped out. The problem, says Henrietta, is not how her sister feels, but the devastating impact on other members of the family.
By contrast Leanne’s brother, who has made a good functional recovery can often be distressed. Leanne works with profoundly disabled people and comments on the difference between some of her patients who have severe brain injuries, and her own brother who, on the surface, appears to be better off:
“You know, I’ve got one lad there that’s profoundly more disabled than my brother, but he’s happy. And I start weighing up in comparison. He’s in a wheelchair. He’s hemiplegic. He is dysarthric. He’s got one-word sentences. But he is happy. My brother can walk, talk, looks the biz and he is fundamentally miserable. He’s on so many drugs at the moment for depression. I’d say once every couple of months he wakes up and he just sobs. And my Mum can’t stop him sobbing. No one can stop him sobbing and he doesn’t want to live anymore. And he doesn’t know why he’s doing it and he misses being him at one moment of recognition.”
He ‘misses being’ him is a challenge for people who recover from brain injuries with some memory of who they were before, but if the person’s brain injuries mean they have forgotten who they were this might in some ways lead to less distress.
‘Quality of life’, as experienced by any individual at the time, cannot be pre-judged. Research with people with severe physical disabilities (including locked-in syndrome) show that many rate their quality of life just as highly as people without such disabilities – although it may take time to come to terms with their new condition. It is, of course, impossible to ask people about their quality of life if they have no communication avenues at all – and an inability to communicate may decrease quality of life. However, observations suggest that some people are content even if they had previously said they could not tolerate such an existence, including when they cannot communicate, or at least not do so with words.
How families feel about their relative’s recovery is influenced by how happy (or unhappy) the injured person seems to be in the present and whether or not they can remember who they were (and be distressed by this). It also links with other issues – including people’s religious or political views, their hopes for the future and the impact of caring on the whole family. A key factor for many people is their views on what their relative would have wanted – and the value they place (or not) on respecting the person’s prior expressed wishes.
Some people focus on being proud and happy for the survivor. But they are also distressed and angry to see their relative in ‘a state he never would have wanted to be in’. Most try to ‘face each day as it comes’, but all expressed worry about the future – including problems such as long-term medical deterioration decreasing quality of life, cuts to funding to support their loved one, or simply their own ill health/old age and decreasing ability to support their relative in getting the most out of life. (For more see ‘Resources’).
A ‘Permanent’ diagnosis
Severely brain injured patients should be regularly reassessed to ensure their needs are being met (e.g. if they move from a vegetative into a minimally...