Repeated life-threatening incidents
- 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’.
- Mikaela thinks about her father’s funeral ‘all the time’ and ‘I won't stop thinking about it until I've done it… I might have to face this tomorrow I might not have to for the next twenty years. I don't 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 Ben 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.
The current law in England and Wales is that a court order is needed to remove the feeding tube from a patient in a vegetative or minimally conscious state – but clinicians don’t always seem to know this. Removing and then reinstating feeding happened to the relatives of several families we interviewed for this research.
- mother of one daughter
When the kidneys aren’t working he can't have feed or fluid much, because otherwise it floods his lungs. So if he’s not – you’ve got to balance the input, output stuff.
What input, what comes out. So, you know, we do go through phases where he’s not on the feed, but then if he’s surviving you have to put him back on the feed because otherwise you’re starving him unnecessarily. That’s what the law says, lah, lah, lah. You know, you have to balance it. I can understand in a way, but at times you think, why are we putting that feedback on? Why are we putting that feedback on? And they say, ‘Because it’s against the law for us to keep it off, because he’s sustaining on his own. We’re not doing anything for him, he’s still going, do you know. We’ve got to feed him otherwise it’s against the law.’ And so we’re stuck in a very sticky place.
“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.
The current law in England and Wales on what, and how, different treatments may be withdrawn from vegetative or minimally conscious patients is designed to protect their best interests. In practice some families felt that this may not always be what the law is achieving. For example, on the one hand, if the law is not understood correctly mistakes may be made. On the other hand, the need to go to court to have a feeding tube withdrawn, but not to withdraw other treatments, may mean that patients die after treatment is withheld/withdrawn, but only after very difficult and often repeated life-threatening incidents. Some of those who spoke with us would prefer the Scottish system where clinicians can decide on the best course of action in discussion with families – and only go to court if there is a dispute. Others thought the need for a court hearing for withdrawing the feeding tube was good protection (see ‘Artificial nutrition and hydration’).