Intensive care: Experiences of family & friends
End of life decisions
The length of time patients stay in ICU depends on the extent of their illness or injuries - some recover quickly and others need to stay in ICU for weeks. ICU patients receive the best care and every treatment the medical team believes will help them to recover. On the occasions when recovery is not possible, the medical team may discuss with the patient's family whether the use of certain treatments such as ventilation (life support machines) or kidney dialysis machines should be stopped. If appropriate, doctors may also talk to family members about organ donation.
Sadly, not every patient survives critical illness, and death or the possibility of death is an ever present reality in ICU. Most of the deaths in European and North American ICUs involve a decision to withhold or withdraw life-sustaining treatments.
According to the law in the UK, family members are not responsible for making medical treatment decisions on behalf of another adult. Medical staff have ultimately to bear the stressful responsibility of deciding when to continue with the battle to sustain life and when to change the focus to palliative care or a dignified withdrawal of treatment. Even if someone is ‘next of kin’ (a parent, partner, sibling, close friend etc.) they are not ‘the decision-maker’ – and have no power to consent to, or refuse, medical treatment on the patient’s behalf. The only exception to this is if legal action has been taken to give a relative such powers. Medical staff should make ‘best interests’ decisions – informed by the views of family and friends about what the patient would have wanted. It is then the clinician in charge’s responsibility, not the family’s, to decide whether it is right to continue or discontinue different forms of treatment. If the clinician cannot decide to withdraw the feeding tube, the decision lies with the court.
Here people talk about end of life decisions when a relative, partner or close friend was in intensive care.
Some people said that, when it had looked as though their relative would continue deteriorating, doctors had asked them which course of action they'd want them to follow. It was explained that the treatments weren't having any effect and that the doctors could continue trying to keep the patient alive but the family would have to be prepared to accept that if the patient did survive, he or she would be left severely disabled, paralysed or brain damaged and expect that they would have a poor quality of life. In some cases, any improvement in the patient would only be temporary and further deterioration and ultimately death would be inevitable.
Hearing this news was extremely traumatic and being involved in end of life decisions felt overwhelming. These situations are very personal and every family or individual deals with them based on their own feelings and circumstances. The patient's quality of life, coping with someone severely brain damaged and, for some people, religious and cultural considerations are all important.
Some couples said they'd discussed end of life decisions before, and that the patient would not have wanted to be kept alive if he or she would have little or no quality of life.
Others hadn't talked about end of life decisions but the doctors had discussed the subject with them, when their relative had been critically ill,.
They didn't want their relative to be kept alive if she would be brain damaged because she wouldn...
They didn't want their relative to be kept alive if she would be brain damaged because she wouldn...
Husband' It wasn't looking good, yes.
Daughter' He said, 'It wasn't looking good and to be honest I am not sure she will be coming home' is what he said.
Husband' Hm.
Daughter' But by the time we got to the relatives room, which is about two, about three days later, he sort of, I mean you know we made the agreement that if she had another heart attack they wouldn't resuscitate her.
Husband' That was the other thing he said in that interview, you know that was their feeling that they shouldn't attempt to resuscitate her.
Daughter' Yes which was fine.
Did they ask you should they attempt to resuscitate her. What did you say at that point?
Husband' Well basically we took his advice and said well'
Daughter' Well there was no point was there.
Husband' No. No. We wouldn't want her to be resuscitated just to be a vegetable. She wouldn't like that.
Daughter' We had also come to terms with it, I mean really by that point, because we were sort of aware that she was very poorly you know.
One man, an ICU consultant, felt that at this extremely emotional, distressing time, relatives and close friends needed to think about what the patient would want.
Predicting whether a patient will survive or what quality of life they might have is a vast grey area characterised by uncertainty. One couple felt they'd been asked to make end of life decisions but that their options hadn't been explained properly to them.
They felt confused and upset and didn't understand why doctors were asking them to think about...
They felt confused and upset and didn't understand why doctors were asking them to think about...
Father' I mean we were very -
Mother' Because, and we talked with our friend, that said, 'Whatever state he comes home in, he's still our son'. You know, if he dies, that's his fate. But if he doesn't, whatever state he comes home in, he's still our son. And absolutely no way would we countenance turning off the life support or anything of that sort.
Father' And it was the wrong timing. That wasn't the appropriate thing to think about at that point. He was still under enormous quantities of morphine.
Mother' Yes.
Father' And every time that they took him off those drugs he was breathing on his own. So he actually didn't need life support, except that they were sedating him. So he wasn't in a position where, had they have taken away the medication and taken away the life support, he would have just died. Because he was breathing autonomously on his own. So inappropriate conversation there I think.
Some people said they'd wanted to keep the patient alive under any circumstances. Others said that wanted to hold on to the patient at the time but, with hindsight, felt this wouldn't have been what the patient wanted.
At the time, she just wanted her son to live but now feels this would have been selfish because he wouldn't have wanted to be completely dependent on others.
At the time, she just wanted her son to live but now feels this would have been selfish because he wouldn't have wanted to be completely dependent on others.
I would've wanted my son back in any state, after all what he'd done, whatever medically, but I'm then selfish, would my son wanted to come back not being able to speak, not being able to walk, not being able to see? And all this was told to us under the medical team, that this could happen to him. He's been unconscious for ten days and the brain is a complex piece of equipment, and at the time I said, 'Anything, just I want him'. But you look at life so differently and that would've been very selfish because I don't think, in just me and our son, that my son would want to have lived that type of life. So you must not be selfish.
You've gotta make the distinctiveness between that person has gone and yes you are very sad but to have them back on a condition that could leave them not the person that they actually were originally i.e. my son was completely normal other than having this dreadful, you know, his body functions everything was, you know, working. But after this happened, we were told that parts of the body weren't working, would he have wanted that? No. Not at all, not to be in a wheelchair for the rest of his life, not to be able to see, not to be, when he's done all those things before. That's not to say that I would, somebody having a child like that from birth, that's a totally different aspect, totally different.
So again it's the selfishness of what I want and what my son would've wanted.
A dignified withdrawal of treatment was extremely important for people whose relative wouldn't have any quality of life, though he or she could have been kept alive longer by medical technology. Achieving a comfortable and dignified death had been crucial and many relatives had wanted to be present when the patient died.
One woman felt she'd received conflicting information about making end of life decisions at different stages of her sister-in-law's illness.
She felt confused with the information she received from different doctors but, when her sister...
She felt confused with the information she received from different doctors but, when her sister...
And I can't quite remember whether he at any point said, 'You do have this choice. You could...'. I think he really must have said that it, there wasn't a choice. But because there were so many people who at various points implied that you could go on but it would take forever, I slightly blur in my mind what it, that moment.
She was in this period of being slightly better, and then she was worse again. And within about three days they really said that it wasn't worth keeping going, and they did stop, I can't remember what, I think they stopped everything. And she died within about twenty minutes. And that was it.
Some people said the patient had become so ill there'd never been any decisions for them to be involved in. The doctors had told them they'd tried everything they could but the patient had continued deteriorating. For those whose relatives or close friends die in intensive care, it is a traumatic experience which everyone deals with in different ways (see 'When someone dies' and 'Coping with bereavement').
For more experiences of end of life decisions see our section Family Experiences of Vegetative and Minimally Conscious States - Family experiences of decision-making.
Last reviewed August 2018.
Last updated May 2015.
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