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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. 

 

She and her husband had talked about end of life decisions and her husband had said he wouldn't...

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Age at interview: 42
Sex: Female
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You mentioned you had already discussed that at some other point before he was ill?

Yes. 

Had you made decisions like that or it was just a topic of conversation? Or had you had a serious discussion about it? 

We had in the past had sort of fairly serious discussions about what our wishes would be in various situations. And if there was brain damage, if it was just physical. If one died. If the other, or if one was disabled. Different sorts of things. And I think at one particular point I think it was actually triggered by a family bereavement, you know, I think sometimes these things bring issues to a head don't they? But yes we have had a serious discussion over intended wishes. 

Had you written anything down? 

No. Although we do have wills and have had for a long time. Ever since we had a mortgage [laughs]. 

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...

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Age at interview: 60
Sex: Male
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Daughter' Basically the other guy [consultant] had told us that she was very ill and probably...

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. 

 
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It is important for relatives to think about what the patient would want, however hard this may...

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Age at interview: 48
Sex: Male
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Unfortunately you know many patients don't return to the quality of life they previously enjoyed and so I think the families have to try to put themselves in the place of the patient. Were they enjoying life beforehand and will they enjoy life to the same or a lesser extent afterwards. Relatives are often selfish because they obviously often put their views first. It is important to say what the patient would want, not what they want. If he was awake to talk to me now, what do you think he would want? And especially life and death decisions are difficult as many families don't want their loved one to die. Some accept that their time has come but the ones who don't want to let go are often acting in their interests rather than the patients. 

I have been through it. I know what it is like. And especially when you are talking about stopping treatment and withdrawing active life sustaining measures. You explain that there comes a point where it becomes clear that recovery isn't going to happen but we have the technology to maintain life for weeks, if not months. If the final outcome is still the same, whether it is quality or quantity of life, we may need to shift strategy to keeping the patient comfortable rather than putting them through unnecessary pain just in the hope, the forlorn hope perhaps, of them getting better. 

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...

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Age at interview: 51
Sex: Male
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Mother' The other thing is, to be told to, 'Go away and consider your options' is not helpful. What we needed to know was what the options were. Now what they were saying was, 'Can we turn off the life support?' But they didn't say it. Now I've just said they shouldn't give us both barrels right between the eyes, but also they shouldn't hint at things that you don't understand. You know, 'What are my options?' 'Well, keep him going. Or turn him off'. Okay, well, immediately that option was, 'Keep him going'. 

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...

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Age at interview: 59
Sex: Female
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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. 

 
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His 83-year-old father had spent five weeks in ICU and wasn't improving. He and his mother felt...

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Age at interview: 48
Sex: Male
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I think my mother came to the realisation when my father was deteriorating and dying. She always had hope so even though he was there for a long time, he was always improving, suddenly deteriorating, improving, suddenly deteriorating, improving. There was always the possibility that he was going to get out of the ICU and it was only in the last four or five days that it become very obvious to my mother that my father had had enough. And she came to that conclusion that he was suffering.

And was it something you discussed with each other, or had you discussed the situation as a family that if'?

No we didn't. I left it to my mother. I explained what was going on but she could see that he was better or worse and intuitively worked it out. After five weeks the relatives, not just my mother but people in general, get to understand Intensive Care and they know when things are getting better or worse. Until the last few days where it was clear that my poor father had had enough. 

And this is a decision you made together or was it one that you discussed with the doctors, or because you knew what was going on'? 

I took the initiative. He was deteriorating and they offered the option of adding in further support treatments. I discussed this with my mother, and I let her take the lead. I explained what the situation was, and that the odds of him recovering were poor. I was sure they would put him on new drugs and machines if we pushed for it though, in my view, I thought he wasn't going to make it. And she said no, he needs to be allowed to die. She could see it.

 
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She didn't want her husband to suffer any more and agreed with the doctor's advice to withdraw...

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Age at interview: 40
Sex: Female
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So he [husband] was in the ward and he developed pneumonia and went into Intensive Care? 

Yes. 

How long was he in Intensive Care when he went to the hospital? 

The first time? 

Yes. 

He was in Intensive Care for a week exactly. Yes. 

Then in High Dependency for...? 

Six days and then he was back in Intensive Care three days. Two days actually. Yes.

So when he went into the general ward the first time, he went into the general ward after having tests? 

Yes. 

So you knew he was going in? 

Yes. 

Did you know at that stage what would be happening next? 

No. We knew from the results of the scan that he was very, very, very poorly and after our first day there, at the hospital, the doctor there did explain to us exactly what was going on. And he was very, very, very honest with us. You see that is one of the good things about this particular hospital is that they have got a - they believe that honesty is the best policy and that it is better to be very, very open about everything then it is to sort of hide things and so I knew'. 

You appreciated that? 

Exactly. What was going on. 

And on the day that he passed away. Were you there at the time. Or did you receive a phone call? 

I was there. Well he had been deteriorating all day. His oxygen levels were dropping and they had given him everything, everything really and the doctor explained that they reach a point of what they call futility when there isn't anything else they can do really. 

The doctors explained that to you or the nurses? 

Yes, they did. Both actually, doctors and the nurses. And then it was about 3 o'clock in the morning. I did actually stay over that night and the nurse came in and said, 'he has reached that stage' and asked whether I liked for them to carry on sort of trying anything. But really by then I had seen him being prodded about, you know, needles being stuck in every bit of him, and I just thought it is better to let him go really. So they stopped the drugs that were keeping his blood pressure up and he died at 5.15 that morning. 

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...

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Age at interview: 70
Sex: Female
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We were taken into a little room. We'd asked I think to speak to someone, but I don't know. I think probably what had happened is that we'd seen him in the room with her and he'd kind of maybe indicated that things were not going to be all right. And I think it was a weekend and so he was the same person who was on for the whole weekend, because other days you couldn't rely on it being the same person the next day. Anyway, so he took us in there and we talked about it. And I think one of the things that they were saying, they never absolutely said that it was impossible for her to recover, but he made it clear that, even if she recovered, she would have to be in ITU for at least a year and that she would be incredibly weak. But even three weeks on ITU is very debilitating. And that quite apart from the fact that her pelvis was going to have to be treated and might never be stable. 

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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