The people we spoke with described how they were often on ‘red alert’ for years – anticipating the person’s death. Many witnessed repeated life-threatening events and saw their relative very, very close to death.

• Morag says: ‘I’ve lost track of the number of times you’d get a phone call from the hospital saying ‘your dad’s taken a turn for the worse. You need to come back.’ It’s always there, you know, am I going to get that phone call?’
• Angela is now constantly afraid: ‘in fear all the time when I was afraid of nothing, except losing him’.
• Nik thinks about her father’s funeral ‘all the time’ and ‘I wont stop thinking about it until Ive done it, I might have to face this tomorrow I might not have to for the next twenty years. I dont know when this is going to come.’
• Fern says it is ‘inevitable’ that her partner will suffer from further life-threatening illnesses, and that next time she would support a decision to remove his feeding tube: ‘There’s not a miracle coming for this, and I believe he’s had enough.’

Whatever they think is the right outcome for their relative the looming threat (and/or hope) of death can be a huge stress.

Vegetative and minimally conscious patients are particularly vulnerable to infections such as pneumonia, and this can be very upsetting to witness unless there is excellent palliative care (see ‘Death and Dying‘). Ann and Bea are mother and sister of Fiona, who had been in a vegetative state for several years. They had agreed with a decision not to treat any infections aggressively because they felt Fiona should be allowed to die. But Bea found it too hard to watch passively and was actively involved in giving Fiona chest physio when she developed life-threatening pneumonia, to the extent that, Ann comments: ‘If Bea hadn’t got there then, I think we would have lost Fiona’.

Ann: ‘You know, you can see the suffering and distress when somebody has pneumonia.
Bea: ,There weren’t any physios, but I knew what to do to get this nasty stuff up, to get her to cough so that she wasn’t so uncomfortable. Because you can’t just sit there and watch people struggle. I think you might be able to, if they were quietly getting worse. If it’s a quiet thing you might think, ‘Oh, this is nice and peaceful’, not ‘nice’, you’d never think ‘this is ‘nice”, but you might think ‘this is what I want for her’. But you certainly don’t want someone sounding like I remember, like Dad when he was really ill. He was a miner and I can remember what he sounded like with the coughing and the (make gasping/wheezing sound) and that is not something you would wish on anyone.’

The experience of witnessing pneumonia was common for the families we spoke to, and, like Bea, family members often intervened to treat the patient themselves (or demanded that others did so) if they felt the person was suffering, even if they believed the person should be allowed to die. Another, more unusual, experience was seeing the patient deteriorate from an infection, alongside having the feeding tube withdrawn, but then having the feeding restarted.

In some cases it seems that the feeding tube was withdrawn because the clinicians thought the patient was unable to process the artificial nutrition and hydration or because they thought the patient was dying anyway, and it was part of good palliative care practices.

Another woman described her son’s near-death after his feeding tube had been removed with the explicit intention of allowing him to die. However, the tube was eventually reinstated, after the treating team realised they (at the time) needed a declaration from the courts that it would be legal to remove the tube. This was a hugely traumatic time, she says:

‘He was dead, he was just a corpse. I didn’t want the intervention now of bringing him awake. He was, high on drugs. He didn’t know, I thought he was dying. And then and they said they had to bring him back to life again.’

Her son remains alive, in a minimally conscious state.

Our research highlighted that the law in England and Wales at the time on what, and how, different treatments could be withdrawn from vegetative or minimally conscious patients was problematic. It was supposed to protect patients best interests. In practice some families felt that this may not always be what the law was achieving. For example, on the one hand, if the law at the time was not understood correctly (or people had different interpretaions about what it was) mistakes were being made and decisions were changed at short notice (e.g. a tube being taken out and then replaced).

On the other hand, the apparent need to go to court to have a feeding tube withdrawn, but not to withdraw other treatments, was meaning that patients were dying after other treatments were withheld/withdrawn, but only after very difficult and often repeated life-threatening incidents (see ‘Artificial nutrition and hydration‘).