Talking to health care professionals
Having to deal with a life-threatening illness is a considerable challenge. For people who find it difficult to talk to their health professionals the problems may be made worse. Those who find it easier to talk to health professionals often feel more able to meet those challenges with a positive outlook.
Decision making about treatment could be made easier or more difficult according to the way it was communicated. One man discussed the difficulty of questioning medical judgement. Although a doctor himself, he was too inhibited to discuss his doubts about his diagnosis. Another man describes the frustration he experienced when trying to make a decision about treatment because his consultants could never be seen together. A third man describes witnessing an argument between two consultants about whether he should have chemotherapy.
He found it impossible to question his doctor even though he is a doctor himself.
In fact the reason I wanted, I was too, although a doctor and you might think this was quite unreasonable, I was actually too inhibited to explain why I wanted another opinion which was not that I thought anybody else would be technically superior, I happened to know he was technically extremely good, but that I wanted to make sure that people had actually agreed on looking at the specimen that it had been a cancer.
I couldn't bring myself to tell him that at the time and it was only when he was going to discharge me five years later that I said "You know X, I don't know if you remember you probably don't, but there was a point at which you thought I wanted another opinion and I almost did.
I just wanted to explain that it wasn't because I had any doubts in you as a surgeon, far from it. I was just doubtful about whether, because I know that 2 people looking down at a specimen can often disagree because that happens in my own work, I just thought I'd like to be sure that it really was a cancer."
He wished he could get all his consultants together at one time to discuss treatment options.
But I went to see a radiologist within the hospital, he told me that that, not only would it be extremely unpleasant because of the high doses they'd have to give me, but there was also no, there was no guarantee that it would resolve the problem. Plus, there may be other long-term side-effects such as incontinence, and so on, because of the area they were dealing with and he said "If it were me, I would go straight for the surgery."
So I then spoke to the surgeon and decided to go for surgery. What I really wanted to have done, and I kind of felt that it was, it was within my rights to have this, was I wanted all three of them, all the experts sitting around a table with me and one saying you know "OK we can try this?" and the other one saying "Yes but why don't we do this?" and getting all of the information. I didn't really want to go round chasing all of them and getting his story, and his story and his story.
And because this is a life-threatening disease, I mean it's serious, and because I was paying privately and they were all being paid for their advice, I kind of almost felt that it was a fair enough thing for me to ask although I, I made a slight attempt at this but obviously got nowhere at all and I though it was quite, you know in any other kind of business or in any other area, for something as serious as this, you would have, you would have been able to have got the various parties around a table to discuss it, but I wasn't able to do that.
He remembers his two consultants arguing over his treatment.
So they had a bit of a argument over the bed, one one side, this was the surgeon and the consultant, same team and they were arguing over me. So I said' "Please can you talk straight to me, talk to me I do understand what's going on."
And they both said to me' "What do you want to do?" So I said' "Well I only want to do the best thing for myself. If I need chemotherapy I'll have it."
By contrast, a woman describes the confidence she felt in her surgeon's judgment because of the way in which he spoke to her. A man who needed emergency surgery was delighted to encounter a surgeon who assessed his needs and expressed his opinion frankly. A woman who felt exceptionally well cared for describes the approachable manners of her GP and surgeon. Another man fondly remembered his GPs advice on lifting after surgery which was 'to carry no more than one bottle in each hand from the off licence'. He felt that such a good humoured approach meant that people were more likely to remember the advice they were given.
Her consultant's way of breaking the news helped her feel confident about treatment.
And I was actually very impressed with that because I immediately felt that I wasn't on my own in this and I said "Is it cancer?" and he said "Yes." And I asked him if it was operable and he said "Yes it is." He said "I'll tell you what I propose to do about it." And he told me.
I asked him if there were any alternatives, any other options and he looked me straight in the eye and he said "No."
And I completely trusted him, he was obviously very experienced and he made me feel that he was in it with me, which obviously, you know, I didn't feel alone. And, and so I didn't question it, I just decided there and then to go completely with it and to do what he said.
And I've never had cause to regret that. I still feel that that was the best option and, and I'm glad I went for it although I had to have major surgery.
He felt safe in the hands of a surgeon who spoke frankly.
It was quite funny actually because it was like a TV comedy. He came over to me with the team of guys, this surgeon, and he said to me' "I'm afraid you know that you've got a blocked bowel and we've got to operate immediately."
One of the doctors next to him said' "Don't you think he needs further examinations?" So he said' "Fuck the examinations this man has got to go straight to surgery." (laughs)
So as soon as he said that I had a lot of confidence in him.I know it sounds strange, but I did have a lot of confidence in him and I thought he was terrific.
He shot from the hip and that's why when I went in for the operation I felt completely relaxed, it's amazing that. You know some surgeons are very, very aloof and very, very business-like, this guy was the direct opposite and he was terrific you know.
I think out of everybody that's the type of guy that one feels you know you could put all your, well you put your life in his hands really.
Having an approachable GP and surgeon meant a lot to her.
As I say it's like I go to the doctors and they're no doctors to me, they're friends, right from the surgeon down. The surgeon, he's from Glasgow and he's the top man in Britain for bowel cancer which I was lucky to have, and he jokes about things. He, his wife was just into hospital just after I had my operation and I mean you didn't ask what had happened but he told us, he had to cancel because his wife was rushed into hospital. But it turns out she had a wee baby girl and when you say "How's your wee daughter getting on!" "Women. That's two women I have to fight against now!" and he jokes about things.
I mean he does not go in, some of these surgeons when they come through round the wards could hardly speak, but he jokes and he tells you anything you want to know. You just have to say "Could you tell me?" and he'll be honest with you.
Difficulties with communication could add to the strain of people's time in hospital. One man describes being in a hospital where there seemed to be little effective communication between departments. He also remembered being given differing instructions by a nurse who he felt had poor communication skills. Another man greatly appreciated a sympathetic visit from his surgeon after the attempt to reverse his stoma failed.
Lack of effective communication between hospital departments made his experience more difficult.
The communication between departments is abysmal. I mean I think they think they're communicating but I know damn fine they're not, because it just didn't happen at times, and it would come and go, and mostly it went. If anybody went on holiday or went off for a couple of days then nothing happened. And unless you shouted and yelled the place down, which I had to do, at the finish, I had to exercise authority as they say and, and jump up and down!
I just think it lacks management skill. I know what that's like I've done it for a living, for donkey's years in a variety of different sort of circumstances, not just the one I'm in now, but, industry and commercially and so on. And I know for a fact that that's the biggest problem we have in our you know, our economy is management. People skills, getting things organised, making it work, cutting out the nonsense.
And when people say "Oh we can't do this, we've got something else to do", have a look at a time and motion, have a look, see what you can do, you know, what are your priorities supposed to be, make your mind up what you're doing. Either you see your case through, in which case disciplines have got to get used to working with each other, and quickly as well you know, you don't need to make an appointment to see the next consultant there you know, you should be able to do that in the space of the, of the time you've got, that sort of thing.
I could go on for hours but I won't obviously.
Contradictory instructions added to his frustration in hospital.
I was moved from a four-bedder into a single room because I had, because of the infection that I'd had and they didn't want it be a, a problem with others you see. So it was barrier nursing, in theory.
But they neither had the staff nor the equipment to barrier nurse, they couldn't actually manage and they were so busy on that ward in fact they spent most of their time trying to find places to put people in, in beds they didn't have.
And anyway, the upshot was that I went into this room, they couldn't keep it going at all, but I was told on no account, you know, to keep out of the way, you know I was being barrier nursed. And then three days later to be told I couldn't go home because I wasn't getting enough exercise. Well you can't have it both ways sister! You know I mean if I get exercise it means walking up and down the ward, going out into the corridor you know.
I went home, I told them I was going home on the Friday, whatever they did, so get their act together you know, because I couldn't see any reason, so finally they all agreed, I'd have one more night on their terms, which I agreed to and uh, and I walked about and I drove them all crazy, because I kept getting in their way quite deliberately. I'd stand at the nurse's station' "I'm here, I'm exercising! Mobility!" Until they asked me to go to bed and uh, the next day, well you see I was discharged.
A sympathetic visit from his surgeon helped him after the attempt to reverse his colostomy failed.
So he says, "I'm gonna sit with you for a while and discuss things with you." And he asked me how I felt, and I said "I'm very, very disappointed." He says "Well, I knew you would be, that's why I've come to see you because in the, when I saw you before the operation, you were so elated about having an operation."
And did it help you that he'd come to see you like that?
Yes, very, very much so. I didn't expect it, because I know he's a busy guy, and even if he's got time off he deserves it.
No, I didn't expect, I expected to see him on the Monday or Tuesday you know, when they do pop in to see you. But I didn't expect him to come and sit with me and he also rang my other half, to tell her what had happened, and I thought that was very kind. Yeah, he was, he was very good, very good.
You listen to them and as they're talking somehow, that's like therapy. It is. Not all of them have got that bedside manner but uh, he wasn't too bad you know, he seemed to get the argument over and realised that he was getting to me, and I think that's why he stayed with me so long.
He realised that what he was saying was doing me good. And when he went a lot stayed in my mind and he said "You're healthy," he says, "You're fine, you'll heal up and you'll be OK."
Several people had come away from their cancer experience feeling that they had to be assertive in order to get the information they needed from doctors. A woman who had not been told she had cancer, gives her view of how to get the care and information you need. A man reflects on why it can sometimes be difficult communicating with doctors. Misdiagnosis in young people is a problem and Stephen asks doctors not to dismiss the possibility of cancer even though it is statistically unlikely in young people.
She explains the need for patients to take an active role in meeting their own health information...
Just be very aggressive, just be very pro-active. If you don't think your doctor is giving you the best advice or giving you the kind of information that you need I think you need to be very vocal.
I think doctors generally, but for the most part, a lot of that just really don't have that sort of facilitating manner about them. You have to ensure that your doctor talks to you and if he isn't just voluntarily giving information you need to find out, you need to ask, you need to access the resources.
I mean it's your life, you know, the bottom line is it's your life. I think if you put that in the forefront, if that's the most important thing, it's not, it's not, it's secondary if the doctor has a problem with how he reacts to you, that's his problem.
Your main objective is to get as much information as possible whether or not he is the kind of doctor who is receptive and has a good bedside manner.
And I think, I think one of the things that you have to do is sort of depersonalise it. If the doctor doesn't have that sort of natural ability to communicate and to share information, you know, just depersonalise it.
You need to get that information so it has nothing to do with how nice he is and whether or not he's going to be aloof. You be pro-active and you be very insistent that you get as much information out of him as possible.
And I think, too, to some degree if it's not happening I think that you need to feel comfortable with your, with your doctor and I think it's certainly within your remit to get another GP, another doctor if you don't feel comfortable.
But I think, you know, you just have to be very pro-active because your health is your responsibility, it's not the doctor's, first and foremost it's your responsibility and whether you feel bad about the doctor not being nice to you in the long run at the end of the day it's your health that is at stake.
Reflects on why it is often difficult communicating with doctors.
I feel that sometimes, I do, I do.You know they don't classify you as a human being and they don't think you've got thoughts and they don't think that you're intelligent.
That's nothing against them but they're in a special club and one feels that you're intruding if you ask them too many questions "Why, what do you want to become a doctor? you know that's our game, you're the patient, you know stay where you are and we'll do the talking and we'll do the thinking for you. If you need an operation we'll do it, if you don't we won't," you know (laughs) That's the kind of attitude it is.
I think if they sat down like you do with me and just a one to one kind of conversation, down to earth conversation, whereas when you're talking to them you kind of forget that they are doctors, surgeons, misters, whatever they are, titled people with names behind them when they become a human being I think life would be a lot better and you could communicate better.
Because you become tongue-tied with them, I don't know what it is, I've never been tongue tied in my life but there's so many questions you want to ask a doctor and when he's with you you become like a kind of an idiot you know there's nothing you can say.
Stephen would like doctors to not automatically dismiss cancer as an option when investigating young people who are ill.
Yes obviously I was misdiagnosed with cancer and across young people misdiagnosis is a huge, huge issue, and obviously it’s statistically unlikely that young people are going to get cancer, so, but we’ve got to be realistic, I’ve got, given my doctor some slack about it, it was unlikely I’d be diagnosed cancer but when I’m in the waiting room feeling absolutely rubbish with x amount of symptom statistically it’s more likely that I’ve got something like cancer or it’s more likely something is wrong, you know if there is genuinely something wrong with me that warranted further investigation whatever it was, but just for whatever reason, probably mainly economical reasons, I wasn’t, I wasn’t referred for a further scan. Which is a shame if I was referred for a scan earlier the prognosis might be better, I might not be having all the treatment I’m having now.
The main message is to be aware that a young person might have cancer, and think about the diagnosis.
Yeah especially when they’ve come to this surgery x amount of times, repeatedly, and not had an explanation of what’s wrong or what even could be wrong really.
Last reviewed August 2016.
Last updated August 2016.