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Shared decision making

The reasons for shared decision making

When someone is told that they have an illness, they usually want to hear that there is a treatment, that it does not have bad side effects and that doctors generally think that this is the best course of action. Yet in practice this is often not the case. The doctor may need to explain that there is no certainty that the treatment will work as intended, while not dashing the patient’s hopes for recovery. An important situation occurs when there is more than one treatment option, or where the outcomes of treatment are uncertain. There may be different advantages or possible problems with the available choices, for example different side effects or risks of complications. In these cases the patient’s own priorities and their attitudes to the problems associated with the different options are important in reaching a decision about what is chosen. It is important to remember that even when there is only one choice of treatment offered, that choosing NOT to have that treatment is a decision that a patient can make. 
 

Had side effects from taking methotrexate and wanted to stop taking it, but her consultant was...

Had side effects from taking methotrexate and wanted to stop taking it, but her consultant was...

Age at interview: 21
Sex: Female
Age at diagnosis: 12
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And I went into [Hospital] because they wanted to sort out the methotrexate problem, because they said, 'You can't come off it because we don't have anything else to give you'. And I said, 'Well I'm not taking it any more because'' It went on for about a year the sickness thing and nobody really cared. I mean, I cared and my parents cared but the doctors they weren't really too bothered. They said, 'If you're not on it then you know you're, you're not going to be healthy enough'. And, I didn't care. I didn't care if I couldn't do anything, I just didn't want to be sick any more.  

So I went in and various different doctors came to talk to me 'cos I was under Professor [name] at [Hospital] and she has a huge team and they all came to talk to me, all of them. And then she came as well so, you know, the big top dog, and she spoke to me and I said, 'No, I'm not taking it. You can't make me take it because I don't care if I'm, if I'm under 16 I'm not going to take it'. And I just said, 'No'.  And they said, 'Well we'll give you anti-sickness tablets'. And I had tried those, they didn't do anything. I said, 'But they don't work so I'm not taking it'. So they eventually [laughs] sort of, they listened to me.

I'm very involved in how it's managed and I make it my right to be involved as well. I think some people, I wouldn't say they get walked over but they feel that they don't have the right to say no because it's difficult, I must admit when you've, if you have got quite an over, over-bearing consultant, I mean my consultant she has to be strong and she has to be pushy because she has to fight for a lot of people to get the medicine they need, but that also in turn means that you have to be strong and have to be willing to fight if you disagree about something. So, it is difficult but you just have to have the strong will to do it. And you pick it up along the way.  
 

He was offered various treatment choices for his prostate cancer and assured that he had time to...

He was offered various treatment choices for his prostate cancer and assured that he had time to...

Age at interview: 77
Sex: Male
Age at diagnosis: 75
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 But the radiologist was extremely good. He outlined the options, he said 'Surgery,' he said 'well your consultant doesn't think that would be an option,' he says 'now with the radiology,' he pointed out the side effects, loss of potency and saying well there were ways of still enjoying your sex life and all the rest of it you know and but the thing that really, what worried me was the prospect of sort of double incontinence. Now that really set me back a bit you know and also this may seem trivial but this treatment would have to be conducted in Y Town. Now I thought it was, I was so naïve I just thought it would be a one visit. Oh no it's going to be half dozen visits. I thought how the devil am I going to get to that town and back you know, you can't, the wife does drive but she only drives up to the village shop and back you know I thought get up early in a morning and sort of with frequency, I'm not worried about the driving but with frequency and problems it's a very great worry. Anyway we discussed it at length with the doctor and he said 'Well,' he said 'Or you can just wait,' I said 'Well if I just wait I'm getting older, would that option still be valid or available to me? 'Oh yes,' he said 'yes,' he said. 'Look,' he said 'here's my home telephone number,' he said 'any time,' he says 'You want me to take action,' he said 'ring me up'. 

 
That's nice.
 
Oh I thought it was wonderful. I think he was conscious possibly that there had been such delays before because of clerical problems. So I thanked him, I thought well I can't, I'll wait because that was one of the options that they gave on the video.
 
Did they, did he give you the option of being collected in a hospital car if you did decide on the radiotherapy?
 
No that wasn't given as an option.
 
So the transport was one of the reasons why you decided not to go for radiotherapy and the worry about the incontinence?
 
Well, yes 
 
To what extent do you think the video helped you make a decision?
 
Yes it did, it did make a serious contribution. I think it was, had an American bias and so they're much more advanced in their, or seemingly advanced in their treatments and their surveys, it gave, you were loaded with statistics and they were not really pertinent to the patients in the UK because the backup treatment and the facilities in the States possibly were sort of much better than here. But nevertheless the options that were available and so on did need clarifying being on a video you could switch off if you were feeling, well I've had enough of this, and you could go over it again, so yes that was quite, quite valuable.
 
And one of the options was watchful waiting?
 
Watchful waiting, yes, oh yes very much and I thought well, so that was the
 
Had the surgeon and the radiologist also mentioned the option of doing nothing, of watchful waiting?
 
Oh yes the radiologist certainly he said, he said 'I just have not got a crystal ball,' he said 'I'll look into it,' he said 'but I can't really advise you,' he said 'if you go down that road of having the radiology treatment,' he said 'all I can point out,' he said 'These are the possible side-effects.' He said 'You may not experience any of them.' And so I thought well there's still this worry over double incontinence, traveling and so on, I thought well I'll wait another 3 months.
 
 

Advises people to tell their GP about any side effects, which she emphasises, can vary from...

Advises people to tell their GP about any side effects, which she emphasises, can vary from...

Age at interview: 50
Sex: Female
Age at diagnosis: 45
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 So it was like a continuation of everything. So you've got to be very careful, you've got to know your doctor, you've got to be very frank with your doctor and say to him look this is what's happening with this tablet. They've heard it all before, they're not going to hear anything that's going to shock them, so it's a case of if you're honest with your doctor and say “Look this is nae, this really this isn't working, is there anything else you can suggest”. 

 
As long as you've got a good rapport with your doctor you can sit and talk about any tablet you're going to be put on, he will give you the most major side effects that goes with it, and you can discuss it with him, if it’s going to be beneficial to you and is there another tablet that doesn't give you so many side effects, if there is would it be because you're on some other tablet, would it be counteractive to that tablet.
 
So as I say a good relationship with your doctor you need to have, you need to discuss it with him or her, and say “Look what is the best thing for me”. You've got to be willing to try different tablets. I mean even if the doctor says to you these tablets side effects are horrific, it might not be the side effects that you get, because every person is different. 
 
So it means that you're not getting the same side effects as somebody else is getting on the same tablet, so as I say it’s your body, it's the chemicals or whatever the makeup of your body, it’s how that deals with any foreign substances that you put in it. And you have to actually be aware and be able to turn round and say to the doctor ok I'll try it but if it doesn't work I'll come back.
 
Another example of shared decision making is when factors specific to the person’s life are accounted for in decision making, for example, Oliver describes his consultant asking when his exams were before they decided together when to try a medication change.
 

Harry trusts his consultant and says 'he's changed his life'. His epilepsy is discussed in terms of his whole life, and he can ask questions without his parents being there.

Harry trusts his consultant and says 'he's changed his life'. His epilepsy is discussed in terms of his whole life, and he can ask questions without his parents being there.

Age at interview: 20
Sex: Male
Age at diagnosis: 7
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Harry' Yeah, my consultant is very good now. He's a nice guy, he's reassuring, he's realistic as well.

Mum' And you feel confident, we feel all confident.

Harry' I can trust him and I feel confident about what he says and I take his advice any day. I've always actually been like that 'cos, there's quite a few people who sometimes think they know better than their doctor, but I don't, I do what the doctor says within reason really.

Mum' He's been the best overall I think.

Harry' Yeah, my doctor, my consultant now, he is a very good, very good doctor. He's actually changed my life really.

What do you mean?

Mum' Yeah, he has, he's the only one.

Harry' He's well, He's stopped me having seizures really at the moment and I've gone to him and asked him questions. I remember one time I wanted to ask him about a personal question, and I asked is it okay if my parents aren't there, he just said 'right out' and he just told my parents.

Mum' He's been great.

Harry' Told my parents to go, like I'm sorry you've got to go, and I need to talk to him on my own.

Mum' Yeah, and then he sent you out.

Harry' Yeah, and then he sent me out to talk to my parents. But he's a nice guy. I think it's he, cos unlike all, most doctors just put, I think they put you on a drug and they don't think hang on a sec, what's this gonna do to this guy, what's this gonna prevent him doing, what's this gonna be like on his school work, but my doctor he, you know like'

Mum' He's always (willing) to help.

Harry' He's willing to wait you know, like till after my exams to. I'm gonna come off one of my drugs and unlike the doctors who'd say right I'm gonna do this, and he'd go, he said, like 'when do you want to do it?' And he's asked me the questions and he's asked me what I want to do. And I think there's not enough out there who do ask those kind of questions.

Mum' But also he's explained everything hasn't he?

Harry' He's also said to me and like that he's, 'cos he looks at me as a basically a young lad who wants to go out and enjoy himself, and he understands that.
There might be some circumstances in which sharing a decision is not the right thing to do. This could be because it is very clear which treatment is best, and so the doctor will want to recommend this firmly (though the patient may still decide they do not want to follow that advice). Doctors may not be able to support a patient preference if they do not believe it would be a safe or reasonable treatment. Or it might be because the patient has done all their own research and feels they need no further advice from their doctor. In practice these extremes are unlikely, and most decisions could be shared to some degree. Another factor is that, when people are healthy that think that they would want to be fully involved in decision-making, they may feel differently when they are ill. They may choose to put themselves in the hands of trusted professionals to make decisions and care for them. When the diagnosis is life threatening and none of the treatment options offers a particularly good chance of survival people may have a strong sense that they do not want to feel responsible for the decisions (see ‘Why do people sometimes not want a decision to be shared?’).
 

Has complete faith in her doctors and has never felt a need to get involved in treatment decisions.

Has complete faith in her doctors and has never felt a need to get involved in treatment decisions.

Age at interview: 63
Sex: Female
Age at diagnosis: 36
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I feel if I'd questioned it [treatment], I would have had a choice. But I have complete faith in the people that look after me. I've never felt any need, if somebody says to you look this is a hard drug, this is methotrexate, I think you should take this, or try it on this dose, you gonna have to have a blood test every four weeks 'cos I want to monitor the this, that and the other, you feel confident about that 'cos you know in four weeks you'll have a blood test and when the results come back, it's gonna tell the rheumatologist whether it suits you or not. I, the way it's been presented to me, has been the correct way, and I've never felt any need to say why or, I've just thought, right, if you think it's a good idea, it's always been adequately explained to me and I've been quite happy with everything I've taken. Maybe that's not a good thing, but it suited me fine and it's, I've not been let down.
The role that people want to take in their treatment decisions is likely to depend on the nature of the health issues, how long they have been dealing with it and how much they know about it. Someone who is well informed and happy to engage fully in discussion about their care in a long term condition may find that they want a different role if they have a new or different health decision or situation, especially if the new issue is time limited (like pregnancy).
 

Ruth said that she used to take whatever medication the doctor gave her without questioning it. After living with arthritis for 24 years she is willing to ask lots of questions.

Ruth said that she used to take whatever medication the doctor gave her without questioning it. After living with arthritis for 24 years she is willing to ask lots of questions.

Age at interview: 28
Sex: Female
Age at diagnosis: 5
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So do you feel as though you know you’ve been involved in the management of your RA?
 
Probably not as much, thinking about it now, as a 29-year-old mature woman, rather than a as a five year old child, probably not as much as, as I would have liked. It does tend, thinking about experiences and as I say, I’m looking back so it might be a bit off but sort of a, it’s sort of a one-way street almost. You sit down in front of them. They throw a lot of drugs and treatment at you, you know. They say have this, have that. Whilst I’m sure they wouldn’t any objection to you asking any number of questions. I think it’s a only, only relatively recently and not even now for a lot of patients that you feel that it’s your duty to be involved more, to ask more questions. 
 
I think that is only a relatively recent thing that maybe ten and twenty years ago, that’s what you were expected to do. You go and you sit there and you say, “I’m sick make me better”. They give you something and they make you better, that’s it. You don’t ask questions. You don’t interfere. You just let them do their thing and I think that probably when I was growing up that’s probably what we did, you know. We let them guide us, which is you know, not necessarily a bad thing ‘cos we you know, they know about these things and you don’t, in the most basic terms. 
 
But as you get older, as you’ve had the illness a long time, you learn about how your body reacts to certain things or deals with certain things. And then after you’ve had it a certain number of years as I have, you do then begin to answer back a bit more, to ask more questions. Also of course the other thing is that, you know, you sit there and they say things to you. They say, “Take this drug or have this treatment, or have this surgery” and you don’t think about half the things you want to say until you’re back home. And you think, ‘Oh I wish I’d said that’ and ‘I wished I’d asked him that’. And with the Internet, which is a great thing, you can go on line and find out about of things that, you know, you could have asked the doctor. 
 
I know they say you should write a list of questions but I’ve never really done that. But no I think definitely it’s only really very recently and certainly with a lot of the women that I’ve seen on the ward, other patients, when the doctor comes on his rounds in the morning and speaks to them, they lie there and the doctor speaks to them and then the doctor goes away again. You know they don’t, it might be because they don’t have anything to ask him. But I, generally speaking he’ll always spend longer with me because I’ll always say, “Well what’s this gonna do? How long is this gonna take? What affect with this have?“ It gives you more experience I suppose as you get older and you’ve got 24 years of experience so, it’s a good thing on the one hand and a bad thing on the other I suppose.
 

Shirley felt she was an expert in her own long-term neurological condition, but when it came to...

Shirley felt she was an expert in her own long-term neurological condition, but when it came to...

Age at interview: 39
Sex: Female
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 It was really, you know, knowing how I am and how I like to know about things, and how I like to be involved, and in control, and it's my life and I'll look after it myself, then I completely surrendered in pregnancy. And, you know, going into another pregnancy, then it will be different. I won't just surrender, because I know more about it and I know more about what happened to me after the first pregnancy so I will, I will be more thoughtful and more proactive.

 
Just say a bit about you, your, what you were saying earlier about sort of being an expert in one set of conditions and then this sort of feeling of novice stuff.?
 
Yeah, I don't know whether it was like symptom overload but I was quite au fait with what was wrong with me, and how that affected me and how I handled it, but then having other symptoms put on top which actually belonged to another condition called pregnancy, then that did seem like an overload, and I thought, “No, no, these people know much more about it than me and I'm, I'll just let them get on with it.” But which is quite bizarre because it was actually happening to me whereas I let them handle it...
 
But I feel very strongly that it won't be like that again.
 
See, I don't know really how my situation could be sort of replicated because I am in shock still at how much I gave over to health professionals. And actually they're professionals but they're not experts in me, only I'm an expert in me. And I can't believe that I surrendered so much [laughs]. It really is a big source of surprise to me.
 
Especially when you are so used to being the expert in your?
 
Oh yeah, but then ironically I gave over to the professionals and then it all went really badly wrong.
 
Yes, because you said you were questioning that the Heparin incident?
 
I actually said, “Are you sure I should have this?” And the nurse said, “Yes, it says so in your notes.” But actually the notes hadn't been checked so I shouldn't have had...
 
And you knew that?
 
I did, but because I was still in my sponge state of just accepting things being done to me then I said, “Okay.”  
 
Clinicians may be tempted to assume that they can anticipate what people will choose and prefer. Sometimes people feel that a clinician has made assumptions (based on perceptions of the person’s education, ethnic group, age or social class background) about how informed and involved the person wanted to be. For example the mother of a child with autism suspected that the doctors might have involved her more if they had seen her as a professional equal rather than a ‘stay at home mum’. Another example is seen when considering the choices men make when being offered treatment choices for prostate cancer. Some treatment options can affect the ability of the man to have an erection or to have sex. It is not possible to assume what people will choose, for example because of their age, and each man needs to make an informed decision for himself.
 

Caron felt if she 'had been a business woman instead of a stay at home mum' she 'would have been dealt with a lot better'.

Caron felt if she 'had been a business woman instead of a stay at home mum' she 'would have been dealt with a lot better'.

Age at interview: 24
Sex: Female
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Generally how would you describe your dealings with professionals?

 

I think that if I was more like other business women, a sort of woman, instead of a stay at home mum I would have been dealt with a lot better. I do believe. I think if they knew what I was talking about and I went in there and I was right ‘blah blah blah’, they would be treating me a lot me a lot better then me going well I think there is something wrong with him ‘blah blah blah’. Do you know what I mean? I think they do stereotype, yes, that is what I think.
 
So you are saying not too satisfactory then?
 
No. No. Not when I was trying to get help for him and even now, you know, if I ever try and ring his paediatrician, well I have tried to three times in the last month and I haven’t got a single reply, I can never speak to her and she will never ring back. So it is still not very good no.
 

Alex was shocked when she saw the catheter because it was so close to her vagina. She wondered if she'd be able to have sex again. She had it re-sited.

Alex was shocked when she saw the catheter because it was so close to her vagina. She wondered if she'd be able to have sex again. She had it re-sited.

Age at interview: 51
Sex: Female
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I went for the operation which was done under sedation, very simple, for me anyway, it was, I just fell asleep and woke up and it was all done and very neatly. But when I woke up and I looked at where it was put, I was really alarmed because it was very low down on my kind of pubic bone, really near my vagina and really near my clitoris.
 
And I thought, “Oh my God”, and I didn’t say this to anyone, not my husband, nobody. But I thought, “Oh my God, am I going to be able to have sex again, will it get in the way?” and then I thought, “Am I even going to be able to have an orgasm again?” Because I had like this plastic tube right near a very sensitive place but I didn’t say anything about this.
 
It took me two years to decide to have it re-sited because I hate hospitals, but I did have it done and it’s great because now it’s much more out of the way for sex so it isn’t quite as annoying as it was before.
 
It’s a little bit higher up is it now?
 
Yes, it’s higher up.
 
So almost at the level of the belly button?
 
No, it’s to one side, because I wanted it slightly to one side because the good thing this time was the siting was done in consultation with me and my consultant and that is brilliant. Because then you can both have a discussion about, well I said I’d like it here and then he could say well actually here might not be so good because of this, then me and my husband could decide again where we wanted it.
 
That’s good.
 
So that was really good but that took quite a few
 
Six years.
 

Yes, of talking, and the fact I would say to anybody who is going to have a suprapubic catheter, ask about siting. Decide where you would like it and then have a conversation about that because it’s really important to do that. 

 

He chose active surveillance for his prostate cancer rather than a prostatectomy because he was ...

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He chose active surveillance for his prostate cancer rather than a prostatectomy because he was ...

Age at interview: 74
Sex: Male
Age at diagnosis: 72
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 I was very upset in London when the biopsy was done because the consultant said 'I operate on you right away.' Now I had read up things meanwhile and I was terrified of either incontinence or well lack of sex.

 
I saw this consultant who had done this biopsy, under whose direction it was done, in fact he had directed himself and he was insistent that he would operate on me and I was really upset. He said 'I've done 400 of these and only 10% go wrong,' [laughs] and I said 'Yes but I don't want to be 1 of the 10%.'
 
My wife kept pestering me in a very nice way that I should think about it and my children, well they live in different countries apart from one in London, one in Scotland and the others are phoning me up every month and saying 'How is it going dad?' even 2 years later and it's very sweet but I don't really appreciate that very much. 
 
The decision that an individual makes can sometimes surprise their clinician – for example women given the option of breast conservation may prefer to have a full mastectomy as treatment for breast cancer. A woman with a family history of cancer saw it as a ‘no brainer’ to have her ovaries removed, although the surgeon wanted her to go away and think about it. Another young, married woman explained that she was willing to have her ovaries removed as a precaution after her breast cancer treatment because she and her partner had already made up their mind that they did not want a family.
 

The decision to have her ovaries removed was fairly straightforward because she and her partner...

The decision to have her ovaries removed was fairly straightforward because she and her partner...

Age at interview: 47
Sex: Male
Age at diagnosis: 37
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 He [doctor] said my treatments would be radiotherapy and I’d be put onto tamoxifen for five years. But that’s all he could really tell me, oh but the oncologist really explained more to be about how that was all going to work. He said, but in addition to that, as an extra precaution because of it being oestrogen positive they wanted to remove my ovaries as well. So straightaway I just said, “Yeah, just do whatever.” Now I was in a fortunate position, we don’t have children but we had already made our minds up that we weren’t having any children. So to lose my ovaries wasn’t a big thing, which I appreciate it would be to many people. 

The characteristics and personalities of the patient and the clinician both influence how they share decisions. It is not surprising that patients sometimes find that they have a better, more ‘in tune’ relationship with one professional than another. A consultation with a different GP, specialist nurse or consultant can unlock opportunities for engaging in decisions that had seemed impossible to discuss before.
 

She thought that the GP was rude but got on much better with a specialist diabetes nurse who, by...

She thought that the GP was rude but got on much better with a specialist diabetes nurse who, by...

Age at interview: 32
Sex: Female
Age at diagnosis: 20
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 So I avoided doctors for a long time. And then my partner now, said, “Look you've gotta get this sorted.” And I went in and I saw my doctor and, yes I think he did it for the right reasons because he knows… He must've realised straightaway I was stubborn - I will do things my own way - but he was also very rude and obnoxious, and I did feel like wanting to change my doctor but then I thought well maybe he's doing it because I am that kind of awkward person that, I will only go in if need be. But at the same time he was still quite rude - I suppose if somebody's not going to look after themselves then yes they've got every right to be rude - but it does make it hard going into see them.

 
And I just luckily enough my nurse, she actually looks better, looks after me a lot better, than my doctor and I go in there and we'll sit and we'll actually chat and she'll ask me how I'm feeling, what's it like when I take my insulin.. she suggests little things, you know, like just going out, going shopping in, in the daytime. And I've felt that she has made a difference to my health and wanting to get better because she's took time to understand me and my problems first. You know, to realise, you know, it's more than just giving out somebody a pill, or saying, you know… Like she'll say, “Just, you know, if you're going to smoke just cut it down.” You know, she's given me little guidelines like 'Gradually do this… Not, 'That's bad, stop it.' 'This is like this, stop doing that.'
 
And like she understands like, it's like, because of the size of me, like a lot of people automatically think you eat all the time, and it's like it's not often that case. I mean [partner], he actually eats like anything, I've never seen, you know, somebody eat so much and it's like, how can he be the size he is and what he eats and what I eat, how can I be my size?
 
But I purely know now it's exercise that's going to get my weight down. And you know, I'm not a junk eater, I like fresh food, I like vegetables, I like fruit, but when a doctor just looks at you, like my first doctor, and he says, “All I could see is.” because like I said to him, “Every week I went in with my diet plan.” And he said, “But you can't be eating that because of your size.” And I said, “Well I, why would I lie, I'm coming to you for help? I have no reason to lie I want to change, you know, you know I, I don't wanna be this size.' But obviously there's something wrong - that's why I was going to him.
 
But it took like, for him to find out more about me, to make him realise that, you know, just because I'm a big girl doesn't mean I sit and eat all day. And like I have exercise and I go out, I used to do a lot more exercise than I do now which I will get back to, but it took that, you know, because at first he was like, “Oh I just give you this pill and I'll just give you that.” And it wasn't that, I think it, it took that little bit more, for him, I think to open it up and say, you know, you can treat this by doing this and doing that, but yeah doctors are the, the scariest of things.
 
 

She had been resistant to a GP who suggested she should take an anti- depressant. But another GP...

She had been resistant to a GP who suggested she should take an anti- depressant. But another GP...

Age at interview: 42
Sex: Female
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 But by the time it came to I would say, oh a year after surgery it just, things were getting worse. The pain was worse. The sensation was worse. I was depressed, but I went quite a far way down the line before I would admit. 

 
But when I went to my GP, because he would like to see me about my medication when it changed etc., and he was quite abrupt with me, you know, it was almost as if, “But you have got depression. Do you admit you've got depression?” And I was trying to say well you know “I've got a reason for that so it's not as if it's, it's”, I was trying to say “Well okay if maybe I'm a bit down but you're not listening to me I've got pain. I'm in pain. How can I best cope with this pain?” 
 
All he wanted to do was to give me Prozac and I was like “Well I just don't want Prozac. I want, I want to get to the bottom of this. I want to get the appropriate medication that helps me cope. You take away my pain, you will take away my depression. You will help me, you know, don't cure the symptom, cure the cause.” 
 
I was completely low, really low, and at that point I realised that I was off work and I thought no, this is not good. You know, I could do myself an injury. I really feel that bad. I was bouncing off the walls and just by pure chance I actually got an appointment with a new female doctor at our practice and I went to see her and we sat down and she talked to me. 
 
And it was the first person that seemed to understand what I was juggling, my career, my home, my child, in isolation but with this chronic pain and symptoms that never got any better, they just got worse. 
 
And she understood that all the other symptoms I was experiencing they were acute on chronic pain and then we agreed a strategy that would address the acute issues and then move on to the chronic issues. And she actually gave me my medication. We talked about Prozac and we, I agreed because I realised by that time, you know, I was very low, but she was so kind and she understood me and you know, the relief that someone understood, that all I was trying to do was to have a normal life.
 
To take part in a decision people need to be aware that there are options. Choices cannot be made without information. The information that patients may use to help them make decisions includes clinical evidence about the outcomes (which may include survival, quality of life, symptom control) of the various treatments; the likely consequences of having no treatment; the frequency of unwanted effects in different treatments; what their own doctor would choose to do in similar circumstances; and what it has been like for other people who have followed the various treatment paths. Recent years have seen the development of many resources and decision-making aids based on this kind of information, many of which are available on the internet. These decision aids have been shown to improve people’s knowledge of the options, risks and benefits and increase participation in decision-making. In the following clips two women talk about their experience of using a written information pack/decision making aid, to help them choose what kind of birth to have, after having had a caesarean section delivery in a previous pregnancy.
 

She thinks without the extra information she got from the decision aid she might have felt overwhelmed by the task of reaching a decision by herself.

She thinks without the extra information she got from the decision aid she might have felt overwhelmed by the task of reaching a decision by herself.

Age at interview: 32
Sex: Female
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To be honest, I felt like a lot of it was left down to me, you know, even when I went to see the consultant. He didn't sort of say, 'Right, this is what we're going to do with you and this is how it's going to be'. Even their attitude was you know, 'What do you want to do?'. And I think if I hadn't have had the information already on board, because I already had seen your program when I saw the consultant, if I hadn't had all that information, I might have felt a bit sort of overwhelmed by that' you know, that much choice sort of thing' not knowing, not knowing what was involved.
At one extreme there is always the option of refusing treatment, but people often do not see this as a ‘real’ choice. For example patients who are offered chemotherapy after cancer treatment often do not perceive this as a ‘real’ choice, since the alternative is to have no further treatment. 
 

Once she was told that she had a high grade tumour she felt that there was no longer a real...

Once she was told that she had a high grade tumour she felt that there was no longer a real...

Age at interview: 54
Sex: Female
Age at diagnosis: 53
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 She [doctor] did warn me that, if the calcifications were what they call high-grade, there’s three grades, low, medium and high, that there would be a possibility of a mastectomy. Well I couldn’t understand this because you hear of people who have had a lump removed, but haven’t had their breast removed, and I’m thinking, “Well, if this is pre-cancerous, why am I having this mastectomy?” But of course she didn’t know at this stage whether I would be high or low or medium grade. So it was about a week later actually that she came to see me, and I could tell by the look on her face that all wasn’t well, and she sat down and said, “I’m really sorry but they are high grade and the only thing we can offer you is a mastectomy.” And I could not believe this, I thought well, this is crazy, it was like an out of body experience, she wasn’t speaking to me, she was speaking to somebody else, this can’t be happening to me, you know.

 
So she sat there and I said, “Well surely there’s got to be an alternative.” But again it was all taken out of my hands; I had no control of what was going to happen to me. All she kept pushing for and I’ve realised afterwards, why she was, or why they were saying this, that I had to have a mastectomy, that there was no option.
 
She did sort of mention in passing that if I was totally against this, then they would possibly give me an intense course of radiation, but they couldn’t be 100% certain that they would get, or kill everything off. So really I had no choice, and this seemed crazy to me, absolutely seemed crazy. So I just said well okay, there and then. She did say of course, “You know talk with your husband and your family,” of course my husband just said, “Well get rid, get rid right away.” You know, and then that’s it as far as he was concerned.
 
About two weeks later I think it was, I went to see the specialist. My husband came with me. Again he was behind a curtain and I wanted him to be very much involved because you can only take so much in, of what they’re telling you, and I had to, I felt that I had no choice but to go along with whatever he was saying. I just wasn’t given this choice. I realised that he was telling me that if he didn’t take everything away then he couldn’t be 100% certain that everything had gone and there could be more calcifications that he hadn’t found. It just seemed so extreme at the time. So extreme. I just went along with it. To be honest I was numb really. That was all I could think was well I’ve got to have this, you know, there’s no choice, I’ve no choice.
 
The internet has made information much more easily accessible to patients and has had a dramatic effect on patients’ ability to call upon a wide variety of types of information to support treatment choices. Patients often feel that only others who have been through what they are going through can really understand and guide them. It is not surprising therefore that people who use the internet for health information seek out other patients' stories and experiences on-line. The experiences and accounts of other people who have faced similar issues may help patients to think through how different courses of action would work for them personally (also see ‘What information needs to be shared?’). It is this understanding that is behind the collections of the thousands of interviews on this website which are intended to provide people with the emotional and practical support they need when they face health issues, including when they need to make treatment decisions.



Last reviewed February 2016
Last updated February 2014
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