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Interview 09

Age at interview: 59
Brief Outline: Her son had lymphoma and bowel perforation and sadly died on a ward. She felt doctors should explain information clearly to relatives, who are usually unfamiliar with medical terms.
Background: Nursery day care assistant, married. Ethnic background/nationality: White British.

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Their son went into hospital on several occasions, including ICU, because of lymphoma and bowel perforation. He sadly died on a ward in 2005. They praised the nursing care their son received but felt that communication with and information from doctors could be improved. They felt that it was important for doctors to explain information clearly to relatives, who are often unfamiliar with medical terms.  
 
 

Everything was explained to them so, when they left ICU, they felt their son was in safe hands...

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Everything was explained to them so, when they left ICU, they felt their son was in safe hands...

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And they came out to see us before we went onto the ward to explain that he was on a ventilator, he'd got lots of tubes and wires, but not to worry, he was all right, and not to be put off by the machines. And that, although he was asleep, they thought that he might be able to hear us. So they said, 'You know, talk to him normally and see what happens.' Which is what we did. And the nurse was explaining what the machines were doing so that we weren't put off by the noises while we were actually round his bed. And then the doctors took us to one side and explained that he'd actually had a perforated bowel, and that had to be removed and re-stitched, that he would be with them for a few days, but the operation had gone well. And obviously they said because of the lymphoma, they'd had to send parts off to research to see whether the cancer was in the bowel as well. And they took our telephone number and said that we could ring at any time during the night and, if we wanted to, or anything happened, they would ring us. And we left him feeling that he was definitely in safe hands and that they were fighting for him as much as we were. 
 

 

She felt doctors used a lot of medical language and didn't explain clearly that their son would...

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She felt doctors used a lot of medical language and didn't explain clearly that their son would...

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They took us down to this room and started to talk. And we couldn't quite understand what they were saying. And it was a lot of technical terms and not sort of much else. And then we'd got this decision to make. So my husband said to them, 'Well, what are you trying to tell us? Are you now trying to tell us that there is nothing more you can do for him?' And they said, 'Yes, that's what we're trying to tell you. And that you've got four decisions to make. One to put him, keep him where he is, take him back to the local hospital, let him go into a hospice, or try and manage him at home'. They said, 'You need to get people up that are very close, that need to be in on the decision. And then once everybody's here, we'll come back and explain to him what is happening'. 

By then there was a nurse in the room with us the whole time and then later on another one appeared. And we can remember her coming in. But the other nurse must have got her there somehow, because obviously they knew that it was getting near the time that [our son] was going to die. And to be honest you could see all the figures going down on the monitors anyway. And so you knew that, you know, it wasn't good. But I just couldn't believe that there wasn't a doctor to come and speak to us. The nurses took us, left us there, and then they came back a bit later and said, 'Look, we really think you ought to have a cup of tea. You've had, you know, you've had a shock'. And they said, 'It will give us a chance to sort him out and make him more presentable for you'. 

When you had the conversation with the doctors who were telling you about your four options, they were using a lot of technical terms and -

Which we just didn't understand. I mean we knew what some of the terms meant obviously, because you do tend to pick up a lot more than you know as it were. But they would, instead of saying, 'Look, we're sorry, we've got some bad news to tell you' there was none of that at all. They went into all this technical terms, and saying what they could and couldn't do. And I would have preferred them to have come straight out, and not for us to have had to turn round and say, 'What are you trying to tell us? Are you trying to tell us that there is nothing more you can do for our son?' And which is when they said, 'Yes'. 

Was it at that point that they also said he'd have two to three weeks? 

We were told he'd got two to three weeks. 

And then it was only later through the nurse that you'?

We found out that he was going that night. 

Was he on a ventilator? 

No. He was on oxygen. And that's one of the reasons they talked about, the two doctors that had come to see him from Intensive Care said that his breathing wasn't very good and they'd got a special machine. They explained that it was a different machine to what he'd been on at the local hospital, but they would see how he went. But they said if it turned out that it was painful for him, then obviously they would stop it. But they said, 'We can assure you we will keep a good eye on him'. So there was me expecting him to be going off to Intensive Care, and then a quarter of an hour later I'm told that he's only got two to three weeks. It was just an unbelievable day in the way the whole pattern emerged, and the fact that nobody actually came back and told us that, 'He's in fact going tonight' from a doctor's point of view I mean, you know. I didn't think it had been fair for the nurse to have had to have come and told us. 
 

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