Having to deal with a life-threatening illness is a big challenge. If people have problems communicating with health professionals they may have further difficulties.
Some people said that communication with their doctors and other staff had been excellent. Many of those who had had surgery recalled how their doctors had drawn diagrams to show them exactly what surgery would involve and that their doctors had used language that they could understand (also see ‘Finding information’).
Helen is married and has 2 children. She is a clerical officer. Ethnic background/Nationality' White British.
And what about interaction with the medical staff?
Medical staff again were lovely too. We, we cannot fault any of the medical staff throughout the whole experience, from the consultant down to the auxiliaries on the ward. Everybody was absolutely wonderful. They never made me feel unimportant or that anything was, you know, if I was being a nuisance or… They listened to me. They gave me direct answers. They never hid anything from me. And they were always there basically. I never felt that they weren’t. And I never felt left out of it or that I wasn’t being told something. Which was good because I, I’d always said that I wanted to, you know, I just wanted them to tell me straight, anything, you know. I didn’t want anything hidden…
And did they usually give you the same information? Or was there any sort of discrepancy between information from one or the other?
No, no, they were all generally singing from the same hymn sheet. I never, I never, I never felt uncomfortable with them. I always felt that they knew what they were telling me and what they were doing.
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Maureen is a retired therapeutic counsellor; she is married with 3 adult children. Ethnic background' White British.
And again, when I first saw the oncologist, because I think we went with a certain expectation and she wasn’t meeting that expectation. She came with a completely different view, and again it felt, you know, a really sort of, harsh, in your face, reality. And felt it was coming from someone who was very detached and well, you know, this is how it is and, you know [laughs].
But since then, since that happened, and I’ve, every time I’ve been to see her since, the relationship has, has grown and I’ve felt really supported, and, you know, cared for. And certainly, I mean, there is this thing, “I’m at the end of a phone”. You know, you know you’ve got someone here who’s, who’s got an obviously incredibly busy life, in what she does, very high up in her field, saying to you, “I’m at the end of a phone”, you know, “You can ring me any time”, which is an absolutely fantastic support to have. And you also get that with the nurses etc. in the oncology unit. There is always somebody that is at the end of a phone for you. But to, to have the oncologist herself say that to you, “You can ring me any time,” you know, makes you feel as if you, you matter. And, and I think that’s important to you.
You know, and certainly, as I say, the relationship has developed. And I understand nowadays, I think we’ve come a, a long way from, from being someone that lays in a bed and they, the staff come around the, and talk over you [laughs] and don’t tell you anything, to coming to the stage where they, I think you get everything explained to you. And sometimes that can feel quite, quite, quite heavy. But I think certainly better that way than, than having them sort of just talk over the top of you and you’re, you’re, you know, you’re just another patient instead of being a person. And it is good to be treated as a person and an intelligent person, you know, to understand what’s going on. And it’s good to be able to know that you can do that.
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John was a shipwright before he retired in 2007 due to ill health. He is married and has two adult children. Ethnic background/Nationality' White Scottish.
And did you always get the same message from different doctors or did you sometimes get different messages from different doctors?
I wouldn’t say they had different messages. They, maybe some terminologies were different but they all amounted to the same result or the same ending, as it were, because everybody has got their own styles.
So some were maybe a bit more streetwise in their explanations than others.
What do you mean by that?
Oh, when the surgeon who operated on me, and it had been explained prior and after the operation what the Whipple’s operation meant and he told me, “Well, in layman’s terms what I am doing is taking out all your plumbing and taking away the pancreas and putting all your plumbing back, not necessarily in the same place, and hope it works again.” And I appreciated that more because it was more down to earth and I could get a picture of that rather than have a word seventeen letters long and not understanding it so no, I appreciated that more but there was quite a, what can I say, there was, there was more of team play when they were round at the wards, sort of well connected.
There was team play?
Yes, yes, well, I felt that they went out of their way to explain things in normal terms as well as in maybe, mixed up. When doctors are talking to you
However, communication between doctors and those we interviewed was not always good. For example, some did not learn that they had cancer until they were referred to a hospital that specialised in cancer or when they were introduced to a Macmillan nurse (see ‘Hearing the diagnosis and prognosis’).
People suggested that communication was poor for several reasons. Firstly, medical terms are often unfamiliar to the lay public. Even doctors themselves are sometimes unsure whether to use certain terms such as ‘neuroendocrine carcinoma’ or ‘neuroendocrine tumour’. William did not understand that a ‘growth’ in his pancreas was life threatening. The next day when a junior doctor remarked that he had a ‘terminal condition’ he became alarmed (see ‘Hearing the diagnosis and prognosis’). When Saba’s mother’s symptoms were being investigated, the doctor told Saba that her mother had ‘metastases’ in her liver. Saba did not realise that this meant that the cancer was advanced and had spread from another part of the body and that a cure was unlikely.
Saba is a designer. She is single and has no children. Ethnic background' Asian.
But the doctors explained that they had found metastases in my mother’s liver. Quite a few And they were … I remember the exact words … that unfortunately they had found metastases, lesions, and multiple lesions within my mother’s liver, and advised that she gets another scan which gets looked at to find out where the primary cause of the cancer is....
At that time I had absolutely no exposure to cancer. Knew nothing about the implications of cancer, you know, things you hear, hear about, so it’s a shock when you’re sort of faced with it. I had no information. I went on the Internet to find out exactly what metastases were. I just saw the word ‘primary’ and just automatically assumed well maybe these are the early stages of cancer, because I’d seen, you know, you sort of zone in on certain words, and heard of many cases, you know, where people had been diagnosed with cancer at an early stage and with all the technology and all the medicine at this stage, you know, I wasn’t … I felt quite positive.
I had a look at it on the internet and I had, I had a friend who had a friend of a friend, who was an oncologist, and I’d sort of called her. But when I looked at it on the internet I just saw ‘metastases’ and realised that actually we’re talking about final stages of cancer. That when the cells metastases, they go through blood stream and end up basically in the liver. And at that time it’s like you just don’t want to accept that.
Richard (Interview 22) said that the surgeon who delivered the news of his pancreatic cancer explained only the surgical options and not what would actually happen to him. Anthony appreciated the way his wife’s consultant explained the facts but said that for emotional support they had to turn to the nursing staff. He wished he had understood this earlier.
Bob thought that sometimes communication between him and his doctors failed because they were busy. He also wondered if some were just not interested in his case.
Bob was the managing director of his own company before he retired. He is married and has three children. Ethnic background/nationality' White British.
Was communication between you and the doctors [good]? Did you always get told the same thing by different doctors?
I’ve I think some doctors are absolutely excellent and a pleasure and it’s like in every, in every field, and some people are just not very good at communication.
Maybe they’re too busy, or they’ve just, just apathy. Oh it’s a job that they do. And then others, others, it’s a vocation, in some doctors. And then others it’s a job that they do to pick up their pay check at the end of the year, and that’s what they do for a living.
But you can’t generalise; you can’t say all the doctors are this, or all the nurses are that. You know they’re all individuals and they’re human beings and they, they’ve got their sort of, their frailties.
But in general I think that they do, they do a good job. Communication could, could be better but it all depends on how pushed they are. I only see one side of it, I don’t know you know, if you’ve got six, eight, ten patients and then you’ve got someone who’s, there’s always somebody on holiday and all the rest of them, they’ve got all the filling in, so it’s very, very difficult. And it’s easy to criticise, and because you’re not well it makes you grumpy as well..
Sometimes communication was bad because continuity was lacking. Some people saw a different doctor every time they went to the clinic. One man thought that things went wrong because the doctors and nurses were too busy and because the hospital was ‘in chaos’. Another man noted that weekends were particularly difficult because staff who were not part of the regular team had different opinions.
Peter is a retired bank manager. He is married and has two adult children. Ethnic background/nationality' White British.
Have you usually had the same messages from the different consultants?
What exasperates me every time I go for a consultation it’s somebody different. And of course some of them look at the file before you see them. But I did see one for example and, this was when? About three weeks ago? He said, “When do you start your chemotherapy?” I said, “I’ve had two doses.” “Oh I didn’t know, I haven’t got the, your record with me.” And I thought, “Here I am for a consultation, discussing how I’m getting on and he, he doesn’t even know I’ve had….”
I mean, yes, you know, you lose confidence a bit. And then I saw the same doctor again on Tuesday, no it was Monday. And I got on a bit better with him. But it does bother me a bit that you’re not, there’s no continuity. The hospital’s in chaos.
I mean twice they called me up, you, it was December when I got, when I subsequently got the good news of the big reduction in the tumour, I went for a consultation and the nurse came out, said, “Oh Doctor whatever her name was, is sorry to keep you waiting, we appear to have lost the scan.” I said, “What scan?” “The scan you’ve just had.” I said, “I haven’t had a scan.” “Oh dear.” On another occasion, now I’m learning the tricks by now, I had a consultation and I knew full well before I had the consultation, I’ve got to have a scan.
Is this every time you go back?
Yes you get scanned.
Every, is this at the beginning of every month?
Yes, the time was getting near for the consultation, and I mean no news was coming for a scan, so I rang them up. And I said, “When do you expect to scan me?” “Why?” “Oh for the consultation next week.” “Oh, we appear to have slipped up”. “Oh dear”. And they are busy, they are very, I said, “Yes, yes I know but do I wait? Do we put back the consultation? Or do you rush me in for the scan?” I don’t know which they did, but had I not rung up….
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David is a Detective Sergeant in the Metropolitan Police. He is married and has three children. Nationality/ethnic background' White European
The other thing with the doctors there is you see different doctors at different times. And different doctors tell you different things. And as a patient, especially with my wife, my wife being there too, is you listen to every part, and I believe you digest it fairly well. And that you also have to deal with the contradiction that you do get, although it’s not great you know there is contradiction and one will say one thing and one will say something another. And a lot of times you’ll, you’ll challenge it.
But it, but again it, I think probably throughout the whole of this that that’s gone on, continuity of physicians I would argue is one of the biggest things that I would have a gripe about. That trying to get a continuous line of care from the same person, to me is very, very important.
Do you remember any specific contradictions that made you concerned?
Just about well, in the hospital, I think there was various drains, and just different doctors, probably, I remember one on-call doctor came in who had a totally different consideration to the surgeon who had carried out the procedure; he wanted to do one thing with the drains which was totally contrary to what the surgeon wanted to do.
And again on, on the, on the weekend it’s kind of, its, even though you’re in hospital everything seems to close down, and like Saturday and Sunday it’s just like a holding area, and nothing seems to get done unless it’s a real emergency.
And in those times, that’s when you tend to see the people, they aren’t the regular staff, I don’t know how they get, whether they come in here as an extra pay, but it was that, that was the typical time you would see the most contradiction, on the weekend.
And that was worrying?
Yes, it’s worrying, and again annoying. Again and I can relate back to what I do for an occupation. They do it every day of their life. They’re talking major surgery, that obviously if you work in a cancer hospital you talk about cancer. But to you its, everything’s new, and you’re listening to it for the very first time. And then you digest it, and that’s where it upsets you I think.
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Ann is married with 3 children. She was a GP for over 35 years til her retirement when she developed pancreatic cancer, co-founder of the charity that runs healthtalk.org inspired by her own experience of breast cancer, and Medical Director of the Oxford University Health Experiences Research Group. Ethnic background/Nationality' White British.
Yes, I had a very rather disturbing incident when I first went for my first chemotherapy. I’d had the blood tests and I’d had the scan and I went and they said, “Oh gosh, we’ve got to get you consented.” It’s a funny sort of way of putting it. Anyway, they, I had to consent to having the chemo, which is also quite funny because you don’t want to have it really. But, so you’ve got to consent to something you don’t want to have, but anyway.
So, a young doctor, very nice young doctor came down to talk to me and she said, “We’re going to give you gemcitabine, you know what it’s for.” Yes, I said, “Yes, I do.” And she said, “And it’s palliative care.” And I looked at her and said, “Palliative, no I didn’t know I had a recurrence, I thought the operation had removed everything that there was there and that this was just adjuvant”. And there was this sort of terrible moment when she was flicking through the notes, she’d never met me before and I was thinking they haven’t told me something. Because I said, “Well, if it’s palliative, I don’t want it. I don’t want to go through this if it’s palliative.” I’d already decided that if I had a recurrence, for me I didn’t want to have any more treatment because I knew it was very, unlikely to be very successful.
Anyway, she went off and then came back and said, yes, I was right, it was adjuvant and explained that normally they give the 5FU which is a different drug first off, and I think because the NICE guidelines haven’t said gemcitabine, although most studies have only just been published, although I think it must be to do with cost, I think. Anyway, therefore she thought because I was on this other drug it was going to be palliative.
But it, it quite shook me and I think really for a week or two I didn’t quite believe it and so I was faced with feeling rotten from this chemo I didn’t want and thinking, “Gosh, maybe I don’t want it anyway, because, or I don’t need it, I’m not going to have it”, But eventually I felt, saw the consultant again and he said no it was definitely not palliative. But it, every so often when I’m feeling not well, it sort of, I think, “Well maybe I’m not well because of the cancer.” And you do, anything that happens, for example, this week I’ve had very bad back ache, well I tend to get back ache, but you start to think, “Gosh is there a secondary in your bones which is causing the pain”. You know, those sorts of things do come to the fore quite often.
Continuity of care may also be lacking when people are being cared for at home. When Simon’s wife, Karen, was dying at home he said her care was excellent but the GP, the hospice and the community health care team did not communicate adequately. The situation was worst at weekends when Karen saw an out-of-hours doctor who didn’t have notes about her.
Simon is a teacher. He is a widower and has two children. Ethnic background/nationality' White British.
Have you got any message for health professionals?
One of the things that came out for me from the whole thing was the, the sense really of the lack of good communication between all the parties involved. So when you’ve got a situation like mine where Karen was you know being cared for at home, right from the start really, I don’t think there’s a, I don’t think there’s a well established structure of communication between the various parties involved in healthcare. You know in the region. So the relationship between the GP, hospices, community healthcare teams, and this, and the specialists. You know obviously the communication is there if sort of necessary. But it doesn’t seem to be a well oiled cohesive unit. And I think if it was, you wouldn’t get, you know, everyone would be much more informed, and I, and you know and patients would feel that they know what’s going on. Because we had the sense of, people were telling us we could get information. We could, we could get people involved but we didn’t really know where to start.
So what you would, what would be ideal is that as soon as you were put in this situation, that, that there’d be a very clear structure of what, of this is the, this is the whole picture and you know it, if someone could actually sit down with you straightaway and say, “Right, well this is the picture. You’ve got these people here and they’re all talking to each other all the time. And everyone knows what’s going on, and you know and this is the person that you need to talk to about any queries you’ve got.” You know, if it was all nice and clearly laid out then you’d get the sense of sort of knowing who to turn to and where to turn, and you’d have the sense of that they all know what’s going on. They’re all very good independently, but I don’t think they work well together.
We would have visits from you know an emergency out of hours doctor for example, who didn’t have any notes on Karen, you know, and there’s no reason for that with electronic communication. Everyone should have all the information all the time. The whole thing about us relating, communicating with the, with the specialist team when probably we should have been talking to more the sort of the health team, the community team more, they didn’t know what each other was doing. So I just didn’t feel that that was, I mean that’s, you know that’s a big issue isn’t it? That’s a, that’s a national, you know that’s a government level issue.
Communication may also be difficult when patients are very ill or dying. People are all different and it is hard for doctors to gauge whether or not their patients want to know the prognosis (see ‘Hearing the diagnosis and prognosis’). Some critically ill patients remain optimistic about a recovery even when the situation is very bad. They may not want bad news or to talk about death and dying.
Simon is a teacher. He is a widower and has two children. Ethnic background/nationality' White British.
You said decisions had to be made. Who made those decisions? Did you make them with your wife, or in conjunction with the doctors? Did you feel there was joint decision making going on?
Yes, they were very, yes, I mean they were very good at information and communication, but quite quickly Karen in particular was really sort of at war with the specialists, with all the you know the whole of the clinical side of it because they wouldn’t, you know the oncologist, our oncologist would not sort of join Karen in her optimism. And again, at the time I resented it, and I didn’t think it was right. Looking back she had no choice.
How was that, how was that consultation managed?
Well it was, looking back it was, it was managed probably as well as it can be. Because I understand about, more now about what they have to do, they cannot pull any punches I think, I mean you know so I understand now, but at the time it feels like it’s managed badly because, well I’m still very mixed. I think that if someone is going to die, and that’s a foregone conclusion and the consultant knows that they are going to die, and there’s nothing you can do about that, in a way I don’t see any harm in pulling the punch slightly to start with. You know on the basis that if you, if you give the news at least gradually to an extent you just soften the blow. I mean in a way I don’t see the harm in that.
However, some patients want to know the prognosis and find it upsetting when they are given unclear or contradictory information. Some people noted that doctors and nurses were very reluctant to give them bad news. One day a doctor told Peter (Interview 36) that he did not have cancer and that he might need surgery to remove the small tumours he had in his pancreas. The next day another consultant told him that he had a large neuroendocrine tumour which was ‘totally inoperable’ and that the prognosis was grim.
Peter is a journalist. He is married and has two children. Ethnic background/nationality' White British.
You did say that at one time you got mixed messages from the consultants. One implied that you didn’t have anything very seriously wrong with your pancreas, and the next person said you had pancreatic cancer. Was communication a problem in other areas?
Well, I think that both of them were, both of them, the person who said he didn’t want to use the word cancer didn’t want to upset me, when at that stage he didn’t know,
Well, he knew that it was a neuroendocrine tumour, but he didn’t know it was inoperable, I suppose at that distinct, at that point. So he said, “Well if I call it cancer, you will be very gloomy and if I just say it’s a little something in your pancreas, which may have to be removed, it won’t be.” But you know that, I’m sure he was acting with the very, very best of motives, I hold nothing against him, but it was just rather striking that, within a day later you get a different approach.
I’m not really blaming anybody here but it, I think that’s what patients, everybody has to be aware of, is that the range of information that you’re likely to get is very, very wide for the same condition. You know sort of one person may tell you X in order to calm you down and not panic you. And another person will tell you Y because he hasn’t got time to mess around telling you anything else.
Another man received conflicting information from members of the team. A nurse told him that his treatment (chemoradiotherapy) was being given as a ‘cure’, but the specialist said this was not the case when he was asked.
William wanted to know what would happen if his cancer came back after he had finished the chemotherapy. His oncologist seemed reluctant to give him the bad news that if it came back it would probably be in his liver or lungs. William explained that in order to get information he had to ask just the right questions. Thinking back over what had happened since he became ill he said he had at times doubted he was getting honest answers from the doctors. On the one hand he wanted information, but on the other the consultant had been a bit blunt when giving him the results of the biopsy and had told him that he would probably have just a year to live.
William is married and has 2 children. He is a lorry driver (not working due to ill health). Ethnic background/Nationality' White British.
And it’s the same as talking to your consultants. If you want the right answer, you’ve got to work out the correct question. If you ask a consultant, “How am I getting on?” he’ll say, “Oh, you’re fine.” When I found out that someone had pancreatic cancer, they had chemo, they were clear for two years and then the cancer came back, I went to my consultant and I said, “What happens when the cancer comes back?” And he didn’t want to answer the question. I said, “Well, it must come back. Therefore you must go back on chemo.” He said, “Well, normally it comes back as liver or lung cancer. If pancreatic cancer spreads, it spreads to your lungs and your liver.” “Thank you.” But I had to pitch the question to get the answer. Because you can’t, if you ask a generalised question you won’t get an answer off them. They, they just don’t want to let you know. It’s almost as if, “Well, I’m the consultant, and you’re not clever enough to deal with the answer.”
So it’s been quite difficult sometimes getting the information you wanted?
Yes. And I’ve always gone to them and said, “Look, let’s be honest, let’s be upfront.” And it did backfire when I got my biopsy results, because he was rather blunt.
John’s (Interview 21) first wife, Ann, died from pancreatic cancer. Her doctors did not tell them that the situation was ‘desperately bad’. John understood that it was hard for doctors to tell them that Ann was dying but he wished he had been told what would happen. On the other hand he realised that bad news might have spoiled the last months that he had with Ann and that doctors have a difficult task deciding what to tell people.
John is a retired pensions manager. He is married for the second time and has 2 adult children. Ethnic background' White English.
…..and this seemed to be the theme that came time and again with nurses and everybody else, everybody seemed to be in great difficulty in explaining to you what the problem was and how desperately bad the situation was. It’s not easy for anybody in the medical profession, I know, but I did feel for the whole year that Ann was ill that everybody was fighting shy of telling us anything. Everybody was trying to be too polite. Everybody was trying to save our feelings. I don’t quite know what our feelings would have been if we had been told on day one, but even the surgeon we talked to and the surgeon who had carried out this, these major operations on Ann, he found it very, very difficult to say that, how bad the situation was. I was having to interpret his, his demeanour and his hesitation in order to gather that it really was very serious.
So what do you think about the health professionals who looked after Ann?
I think they, I have got no problem with any of them except that I don’t think any of them have been able easily to tell somebody that they have got a terminal illness. And I can understand that, it’s not a job I would ever want to do, but I think right from the nurses, right the way through to the, to the top surgeons, to actually be able to sit somebody down and tell them, “I’m sorry we’re going to do everything for you but it’s not going to, it will end and this is what we think, you know, two months, three months, six months.” I don’t envy them that task and I don’t know how I would do it if I had to do it, but I think somewhere along the line we would have been better off being told earlier on that we had a terminal illness which we weren’t going to get out of.
On the other hand of course I mentioned earlier on that we were looking forward and still, still aimed to go on this holiday at the end of ninety-eight. If somebody had told us earlier on that we weren’t, we weren’t going to be able to go I think that would have lowered our expectations, it would have made life far more unpleasant and I don’t think we would have been as happy. So there’s a balance somewhere in here and I don’t know where it is. Perhaps they have to deal with every case as it comes. Perhaps somebody else would have got an entirely different experience of the professionals in being told that they have a fatal disease of some kind or another. Perhaps they treated us the right way, I don’t know.