Background
Methods
Participants
Recruitment and data generation
Data analyses
Results
Patient data | N = 31 |
Mean age, years (range) | 67 (55–79) |
Sex | |
Male | 24 |
Female | 7 |
Tumour type | |
Adenocarcinoma | 18 |
Squamous cell cancer | 13 |
Research centre | |
1 | 24 |
2 | 2 |
3 | 5 |
Treatment stage | |
Pre-chemotherapy & surgery | 19 |
Pre surgery | 12 |
Mean consultation length, minutes:seconds (range) | 25.15 (09.74–41.37) |
Surgeon data | N = 7 |
Sex | |
Female | 1 |
Male | 6 |
Mean age, years (range) | 47 (40–53) |
Research centre | |
1 | 5 |
2 | 1 |
3 | 1 |
Consultant experience | |
> 5 years | 5 |
< 5 years | 2 |
Theme | Sub-themes |
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Emphasis on surgical techniques and in-hospital risks by surgeons | Surgeons presented detailed technical information |
The gravity of the surgery was emphasized | |
Short term risks were listed with little explanation | |
Patients generally accepted the necessity of technical information | |
Some patients did not want technical information | |
Post-operative recovery, long-term quality of life and survival were key patient information needs | Recovery and long-term quality of life information was desired by most, but not all, patients |
Long-term effects of surgery were minimised by surgeons | |
Survival information was desired by patients | |
Surgeons presented the uncertainty around survival | |
Fear may inhibit patients’ desire for survival information |
Emphasis on surgical and in-hospital risks
Surgeons presented detailed technical information
“All the tests suggest- you know, show this tumour in the lower oesophagus – there’s no obvious spread, as w- far as we can tell, to anywhere else in the body, so it’s confined to the lower oesophagus and perhaps the local lymph nodes. [Mm hm] Those get removed with surgery but involved lymph nodes is a worse, ultimate sign than if you didn’t have lymph nodes involved but only time will tell whether you’re lucky or you’re not.
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The surgical treatment involves removing the tumour and the oesophagus, so if this is the- if the tumour’s at the bottom of your oesophagus, we have to remove enough of the tumour- enough of the oesophagus for the stomach below to get- well, get it all out and then you’re left with a gap which, to be able to eat again, has to be put back together and what we do is we make a tube out of your stomach, like- freeing up the top bit of your stomach [Mm] and then that bit of the stomach is brought up into the chest to join onto the oesophagus, there, so it ends up looking a bit like this, so you’re diaphragm is here but your stomach is pulled up into your chest [Mm]. So, the operation involves an abdominal bit where we disconnect the top of your stomach from what’s attaching it in there, the bottom bit of the stomach stays where it is. We then turn you onto your side and go through your chest, collapse the lung so that we can see what we’re doing and then re-inflate the lung at the end of the operation and then pull the stomach up, make a tube out of it and join it to your oesophagus. So, that’s the technical side of the operation
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The bit that, er, causes the complication- well, it’s the complications afterwards that are- [Mm Mm] that are the what the potential problems and big operations have several complications – you can get chest infections, wound infections, you can get, er, bleeding, you can get heart problems, you can get, er, if that join we make leaks, that’s a serious complication [Mm], if the blood supply to the top of this bit of stomach’s not enough and then it dies, that’s a serious complication [Mm]- it clots in the legs. There are a whole range of things that are possible, the major it- you know, the majority of the people get through the surgery [Mm], erm and leave hospital so our mortality rate – the chance of dying in hospital from a serious complication is less than two percent, or around two percent [tut], so a ninety-eight percent chance of getting through major surgery [Mm]
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(Consultation with IS009)
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The gravity of surgery was emphasised
“Now, the operation is a very big operation. It’s a very serious operation and there are risks involved, ok? It is one of the biggest operations a human being can actually undergo”” (consultant IS001).
Short-term risks were listed with little explanation
“The overall mortality rate with a major operation like this, in our hands, is less than two percent, so it’s a ninety-eight percent chance of getting through it” (consultation for IS010).
Patients generally accepted the necessity of technical information
“I think it’s, erm- ‘cause of litigation, isn’t it these days – they have to tell you everything” (ISO001).
Some patients did not want technical information
“I did have the fleeting thought going through my mind, ‘For goodness sake, why are you telling me all this. I’m confident, you’re confident. Let’s get on with it” (IS015)
“I don’t think I was as interested in that sort of detail. I know that there are risks, I don’t want to dwell on it. It’s always near the front of your mind at this particular time- and you’re trying to get away from that as much as possible (IS017)“I must confess it came as rather a blow and what I what I didn’t like really were the statistics that he went into - I would have liked to have heard more about the sort of positive side of it” (IS007)
“Surgeons see it every day. They’re quite happy to talk about it. A lot of people seen somebody run over in the road and their insides hanging out, they’d be on the side of the road throwing up. You know, and if they tell you they’re gonna do something similar to you, you don’t wanna know about it” (IS002)“obviously one needs a- some idea of the process but not necessary of- not necessarily every gory detail” (IS015)
Recovery, quality of life and survival
“I was trying to gauge what the time would be before I could begin to embark upon relatively normal activities” (IS003)“Will I not be able to work any more?” (IS004)“I wanted to know basically what you’re like. Can you, erm, do the things that I now do? Bearing in mind I’m seventy-six years old and I can’t run about like I used to…after six months, erm, how - what will it do? Can I- Will I be able to stretch? Will I be able to paint the ceiling- Will I be able to- to run about? What? I’ll be like- I’ll be able to drive a car, I guess but- you know, so those are the things.” (IS013)
“I don’t think that I would really want to know what would be the long-term problems if any. I want to stay on top – I want to keep on top of it… I don’t really want to think too far ahead, there is probably enough to think about, y’know, at the moment” (IS008)
Long-term effects of surgery were minimized by surgeons
“it can take six months or so before you are back to where you were, maybe longer—six to nine months to how you’re feeling now” (consultation for IS019).“He said, ‘six months.’ But that’s to full fitness, you should be feeling a lot better a lot sooner” (IS001)
Survival information was desired by patients
“I’d like to know is- is your thoughts on, erm- on whether you’d like to know the- the chances of a successful cure and these kinds of things. (ISO14)
Surgeons presented the uncertainty around survival
“But, you know, as- as I s- tell people, you know, if- say there was a percentage cure rate, you’re not gonna be percentage cured, you’re either gonna be cured or not-[Yeah. Mm.] cured and that’s a problem – that’s when we just don’t know anything”
Fear may inhibit patients’ desire for survival information
“I’ve got to ask the question because clearly those are the answers you want to know, you know. Am I gonna die? Or, you know, how long am I likely to live? You know, these are sort of basic questions that you want answers to but you’re scared that someone’s gonna say well, actually not very long’, you know (laughs) and you can’t argue because they’re the professional” (ISO7)