Intensive care: Patients' experiences
Information for planned admissions
Some people are admitted to intensive care units after having major surgery because they need close monitoring and one-to-one nursing (see 'Reasons for admission' planned admissions'). Here people talk about the information they received or looked for about their diagnosis and treatments.
Many people told us how doctors diagnosed their illness and discussed it with them.
He appreciated the doctor's direct approach and he and his wife were given all the information...
The fact that he was quite direct?
And there was no double meaning there or anything?
No, no. But all the specialists I dealt with, the surgeons as well, they explained the operation to me, what they were going to do, what it would entail and everything else, and what could happen. I mean they always say in operations that, yes, you've got a chance you might not pull through. But I mean they have to say that. But everything was fully explained to me, yes, definitely.
Did you ever feel at any stage that you didn't have enough information or that you would like more information on something that you were either having, like a treatment or the cancer?
No, at all times I was, they did keep you fully informed.
Two consultants gave him conflicting views about his cancer diagnosis.
And the surgeon said I was correct in that assumption. That was what the exploration had found out. And then I asked what the prognosis was because clearly I know that pancreatic cancer is a nasty illness. I was told that pancreatic cancer was a very aggressive form of cancer, that there were three options, or a combination of three options. The first one was, as I had then had a stent put in to relieve the jaundice, that I could be sent home and nothing else need be done; that I could have an operation; that I have chemotherapy or I could have a combination of the last three. And the prognosis was in the first case, in being sent home, that I had approximately 11 months to live; but if I had an operation and/or chemotherapy that would extend my lifespan to 3 to 5 years. And that was the options that I was left with.
We then saw an oncologist from [hospital name] who was there whose attitude was so different that she was really upbeat. We were told that I was young, reasonably young, I know I'm not young-young and reasonably fit, that the results of the heart scan were fine. It was nothing to concern us. That the tumour was extremely small and that she felt that there was a good chance the operation would be successful and that she was going to take all my papers the following day to consult with the surgeon at [hospital name] who I've since discovered is an expert in the field, an acknowledged expert in the field with the prospect of persuading him that I was a good candidate for surgery.
The attitude was so different, it's remarkable. It made all the difference. It was almost like good cop, bad cop [laughs]. Or bad cop, good cop. Gave us a lot more thought.
Many people were given lots of information before they had surgery and most were happy with it, and the opportunity to ask questions or call a telephone number if they needed more information. Some also had the opportunity to visit the ICU before surgery (see 'Reasons for admission: planned admissions').
He had plenty of information from nurses before surgery for bowel cancer, including pamphlets and...
Nothing. Nothing at all, no. I might have said to you before we started recording, the only times I've been in hospital before I was not in Intensive Care. And this, varicose veins in Belgium, and varicose veins in Cyprus [laughs]. So, you know, a world of experience of varicose vein operations but not Intensive Care.
And, throughout this time did you feel that you had all the information you needed at the stages that you needed it or were there times where you felt, "I don't feel I really know what's going on." Or, "I would like to know more."?
I felt that I was very well provided with information and pamphlets. For example, by the stoma nurses, they sat me down and explained what might happen before the operation. Will it be an ileostomy? Will it be colostomy? Here are pamphlets, and you can come back to us and ask questions, which in fact I have done and I'm going to see one of them on Monday with a question. And I felt that I knew where I could go to get information, which is always the most important thing, where do you go to get your answers? Because there is an assigned nurse. In fact, it's not one nurse, it's probably several, a team, but you are told Mary X is your assigned nurse and she'll come and see you, which she does at the beginning of the process. And her sidekicks are, and here's the number. And you can phone them at any time which I haven't actually done but I have asked questions because I bumped into this anonymous, this, no not anonymous, this imagined Mary X, I bumped into Mary X in the corridor at the hospital and I did have a question, you see. And she was perfectly happy then to deal with that. And I know that I could phone her now if there was something that was bothering me and she might not be able to answer it but she'd put me onto somebody who could.
Although most people were happy with the information they'd got from doctors, some also looked for more on the internet. A few were concerned about having a catheter and said they'd have liked to know more about this. One man wondered whether counselling before major surgery would help those who were particularly worried about having an operation.
He would have liked to know before surgery what happens when catheters are removed.
An interesting point here is to talk about some of the very personal side of it. One of things is that, all this time, I was catheterised so I had no problem with wetting the bed or anything, no incontinence problems. But then the day came to take out the catheter and they took the catheter out and I couldn't understand [laughs], I really thought that as soon as it was taken out I would flood the bed. But that didn't happen and it was a most awful experience because I wanted to empty my bladder and couldn't.
And I remember a male nurse that was ex-army, I mean he was, you know, feet on the ground, very, very blunt, and he said to me, "What's the problem?" And I said, "Look I want to go." I said, "Get me a bottle." And they propped me up against the locker and I got this bottle and I got myself connected to this bottle [laughs]. And honestly, all I can say is that when it actually happened and I started to fill this bottle it was, I shouted out and I said, "Glory Hallelujah." [laughs]. Because it was such a relief to have gone from being catheterised to normal emptying of my bladder. It's a very basic function but when you've been in Intensive Care it's very, very important.
One woman had spina bifida and had been disabled since birth. She felt she was told very little before surgery to remove her kidney.
She learnt more from her brother than from the doctors about the pain she might have after surgery.
And particularly because of the spinal condition, it would be more likely that it would be more painful for me because the ribs are so close together. And I'm so, so glad that he told me that because actually when I woke up, it was incredibly painful. And If I'd woken up like that, I would have been so scared that, you know, somebody had chopped my arm off or something, because every time I breathed, it was incredibly painful.
So the trouble is that you don't know what you don't know and I think quite often doctors don't realise that patients don't know and they don't know what it feels like and they don't, and things that they don't think, "Oh well, we'll put a chest drain in." That doesn't seem terribly important to them but actually can make a huge amount of difference.
She also felt that doctors could learn much more about treating people with disabilities.
Her doctors didn't seem to appreciate that she might take longer to recover and not need certain...
Because they can give, if you're going to have surgery they give you anti-clotting injections every day if you're in bed, you know, for a long time, to stop blood clots. And it's quite a painful injection, you end up with bruises and everything. And I asked my brother, I don't understand why they're doing this to me because I'd been in a wheelchair for 42 years, I'm not going to get a blood clot from being in bed [laughs] you know. There's people going to bed, you know, who normally aren't in bed, and he [brother] said, "Tell them." You know, "Say, 'I don't, stop this, it's ridiculous'" [laughs]. You know. And so I did and I saw the doctor and I said, "Why are you still giving me this?" And he said, "Well, it's to stop, you know, risks of blood clots." And I said, "Well, yeah but I've been in a wheelchair for 42 years, I'm not going to get one now." And he said, "Oh, yes, right." And crossed it off. But, you know, I needed somebody to ask somebody to sort of, but I mean I couldn't have done if I'd, you know, if I'd not had a doctor in the family, I could have but you have to not be afraid to say, "Actually, why are you giving me this injection?"
Some people had been given information about recovery before they were discharged from hospital, particularly on diet, exercise and drug management.
Last reviewed August 2018.
Last updated November 2012.