A-Z

Shared decision making

Why do people sometimes not want a decision to be shared?

People do not always want to be involved in making decisions about their care and treatment. They may make an active choice to leave an important decision to a trusted health professional. They may feel that they cannot make a contribution because they feel unqualified or know little about the options. Others may not feel able to be involved until they feel more informed, or more confident to do so, for example because they have gained experience of their illness. Even those who are very used to making choices about their health can sometimes shy away from decision making under different circumstances, such as experiencing a new condition or illness.
 

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.”  
 
 

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.
 Preferring to leave decisions to the health professionals

People may not want to share in decision making about their treatment because they trust their doctors to make the right choices for them. They may feel that health professionals know more about their condition than they do and so feel confident putting their care into their doctor’s hands. This may particularly affect people who have recently received a diagnosis of a potentially life-threatening condition, such as cancer or HIV. However, people may feel this way about choosing treatments in a wide range of situations. 
 

Ann knew that her operation was going to be painful. Even though she is an experienced GP, she...

Ann knew that her operation was going to be painful. Even though she is an experienced GP, she...

Age at interview: 62
Sex: Female
Age at diagnosis: 62
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Did you at any point, then, consider that there wasn’t, because you were very well, and had just had this terrific walking holiday, did you ever think, “Why do I let myself in for this operation?”

 
Not at that stage. I just didn’t think there was an option. I knew that most pancreatic cancers present very late with painless jaundice and they can’t operate. I mean the, in fact the gastroenterologist said, “You know, you’re one of the lucky 10 or 20 per cent because ...” I don’t know that I felt lucky but…. “Because it’s operable and it looks to be very small.” At that stage they were thinking it was about 0.8 centimetres. In fact it turned out to be 2 centimetres. But, and I mean they were saying, you know, “It’s operable. It could be curable.” Although I didn’t quite believe that, and I’m not sure I do yet. And, you know, it’s got such a, and there was, there seemed to be no other option really. 
 
And I didn’t want a second opinion, and I didn’t want to know more about the operation than I already knew. I really, I didn’t want to know more. I just wanted someone to look after me and make the decisions at that stage, and tell me what to do. I suppose I knew enough to know that it was not going to be nice, and I didn’t want to know more than that really.
 
 

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.
 

She was very worried about making the wrong decision.

She was very worried about making the wrong decision.

Age at interview: 22
Sex: Female
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I've wanted someone to tell me what the right option is really. But nobody, obviously the doctors and midwife, they, they don't really necessarily recommend which one. They, they keep saying, 'It's up to you, it's up to you' and giving me the benefits and the risks, so I'm still sort of thinking, 'Oh, is it all down to me? Am I going to make the right one?' Whereas if somebody said, 'We think you should do this', I would go by that.

And how have you got on with your midwife in this pregnancy? 

Fine. Yeah, yeah.

Has she been able to answer any of your questions?

Yeah, I mean, we only discussed birth plan-wise yesterday, and she didn't really seem concerned about having' attempting for a normal delivery. And I've had a few talks with the consultant at the hospital and, it's the same really, they, they're not really concerned either way. 

Right. How do you feel about that? About that they're not worried. Has that made you less worried?

Not really, because I sort of think they don't understand that I am worried, if you see what I mean. 

Yeah, I do' So you've been able to discuss your fears and your expectations have you, this time?

A little bit, a little bit, yeah.

So how involved do you want to be in the decision, because it sounds from what you've been saying like you want them to make the decision for you?

Yeah, yeah.

Why do you think you want them to tell you? 

Because I think they've had a lot more experience with this, and I know they say the percentages on the risks and everything, but I just think it - from a medical opinion I think it would be better if they took reign and said, 'This is what you should do'.
People may not want to take part in making decisions at a particular time, for example after first hearing a new diagnosis. The following clips describe three people’s experiences of this situation where they felt that under these circumstances that they wanted others to make crucial decisions for them. 
 

When she was diagnosed with breast cancer, she felt she was in no “state” to make decisions, so...

When she was diagnosed with breast cancer, she felt she was in no “state” to make decisions, so...

Age at interview: 27
Sex: Female
Age at diagnosis: 24
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The strange thing was when, because they didn't know how much it had spread or anything, they don't totally know what the whole situation is until they've opened you up.
 
So they didn't, when they said' "Oh we'll take you to surgery," but they didn't know how much they were going to have to remove.
 
So he said' "Well, would you like an implant?" And I, yeah I didn't know what to think about that.
 
I thought' "I don't want an implant. I don't want something else in my body." But I didn't know how much I was going to come out with and that was a strange feeling because you just didn't know what you were going to wake up to.
 
But I just said' "Well, just make your decision. Obviously if everything's got to go then do something but otherwise."
 
And, you know, they wouldn't know how serious it was either until, until then so. Yeah, you sort of felt like you were going into the unknown a little bit.
 
Well they, I didn't decide on any treatment because I suppose I just didn't know, I wouldn't have known.
 
I mean perhaps you can know more but I certainly wasn't in any state to have been, to have even begun to think about the different.
 
I needed the security of thinking' "They know what they're doing," so I didn't even question that.
 
 

She was happy to go along with the treatment her doctors recommended immediately after she found...

She was happy to go along with the treatment her doctors recommended immediately after she found...

Age at interview: 44
Sex: Female
Age at diagnosis: 44
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But I think the most helpful I've found is just the talking to me. I think it did a lot of good. I thought both teams, my, my tropical doctors ones and my TTP (Thrombotic thrombocytopenic purpura) ones, they were very good at communication. They were really, really good. Like they disseminated results of bloods in time. I don't think I had any problems. And they kept me up to date as to what was going on.

 
Why is that important?
 
Well, because I suppose that helps your planning and focusing as well. And looking forward to the next day. Like one example I'd give you is like when they told me they had found HIV, that I was HIV positive. And the next thing they told me was, 'We're going to start you on retrovirals.' And the following day they started me on the retrovirals. Which I thought, this is quick. They only diagnosed me yesterday, and today they're, they're starting me these tablets. I thought that was quick. It was done very quickly. And they… I thought that was good. Because, as they say, that they need to treat the HIV… start treating the, the HIV so that they can treat the TTP as well, you know.
 
 

She thought she was being “given the best chance of survival” by having a hysterectomy when she...

She thought she was being “given the best chance of survival” by having a hysterectomy when she...

Age at interview: 33
Sex: Female
Age at diagnosis: 30
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 My husband was very bitter for a long time, very bitter about the fact that we'd had no pre-warning, about the fact we weren't given any counselling pre-hysterectomy, about the fact that there were no eggs kept. 

 
That was all positive for me and I really didn't see the point in worrying about eggs not being saved, anything like that, because at the end of the day, if I was being given the best chance of survival, then that was going to be the most important thing really, you know, and we had to move on. We couldn't go back, they'd all gone, you couldn't do anything about it. 
 
But my husband found it really hard to accept that part, that's a whole other thing, it wasn't just ovarian cancer we had to deal with, it was childlessness.
 
People who have long-term conditions, such as chronic pain or diabetes, often become more capable of making informed decisions after living with the condition for some time and researching the kinds of treatments they can have. (See ‘Why people want to be involved in shared decision making’.)
 

Sylvia found the information she got on the internet “more useful than the doctors”.

Sylvia found the information she got on the internet “more useful than the doctors”.

Age at interview: 41
Sex: Female
Age at diagnosis: 40
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The doctor sort of gave me some information but I just didn't understand it, because, you know, I went out and bought myself a machine to prick my finger, and he's telling me that those machines don't really give true, accurate readings, you know, like what the you know, when you give a blood sample at the doc, at the hospital, that would be. But obviously you can't go to hospital all the time to have blood tests and you know, he explained it. But I think if they gave you more paperwork, you know, literature that explained it, that might help, rather than them telling you and then you come back there and you think, 'God, what did he say again?' Because you just forget.

 
So you didn't have any leaflets to take away and read?
 
No, what I did, what I did myself, I went on the internet, and I started to looking up organisations you know, finding out about diabetes. I did sign up to one, I can't remember, I think it's Diabetes UK, I signed up with. Yeah, I think it's them, because I think they, that that's the one where you can monitor yourself on their website, you know, your levels and things like that because they gave me, they sent me a lead that I can just plug into the... Which I've never used [laughs].
 
But that's what I did, I just, and I sort of like made my own little folder. I printed all this information off the website, and I made a little folder that I could sit down and go through it and read to find out what I should be doing, what I shouldn't be doing. And I found that's what been more useful than, you know, the doctors really.
 
But, you know, the nurse sort of gave me a little bit, what I could eat, what I couldn't, and exercise and she sort of, vaguely sort of told me what could happen, you know, with your feet and things like that. But I've found, you know, more useful from the internet.
 
Deferring decisions

Health decisions are not always urgent, even when the illness is serious. People sometimes felt the decisions they were being asked to make could be delayed until the point when it had to be faced. Another reason people gave for deferring decision making was feeling that they did not have enough information at that time or, that their doctors did not know enough to adequately inform them.
 

When he was in intensive care doctors wanted to amputate his infected limbs, but he chose to wait...

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When he was in intensive care doctors wanted to amputate his infected limbs, but he chose to wait...

Age at interview: 71
Sex: Male
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Before I left [city] when I was very poorly, my wife and my two children were called out, and I remember them being called out by one of the physicians to tell them how dreadfully ill I was. And then they came into me, it was, I think there were four surgeons there as the doctor who spoke to me painted a very bleak and black picture in fact which concerned [laughs] me somewhat even though I wasn't, you know, fully compus mentus.
 
But they wanted there and then really for me to decide to have my hand and both my feet amputated. And I said no. I said I'd wait and see how I got on. And fortunately it was the right decision because within a couple of days I felt that much better and, as I say, [consultant's name] took me under his wing, took me down to [city]. He's a brilliant chap really. And he skin grafted my hand because the back of my hand was completely eaten away. And the first graft didn't take. Then he did another which did take and is almost healed now. And he amputated one of my fingers. Took off one of my fingers off my left hand there and then.
 
And subsequently I stayed in hospital until February and then he let me out for about a couple of days, you know, which was very good really. It's nice to go home. And then I went back in and they amputated my toes. And again they are healing up very well. It's the pressure sores on my heels really that are causing, you know, the most problem at the moment but they're improving. And then he finally. And then I came home again after that. Then he had me in just for one day for a local anaesthetic and he took the tips of two other fingers on my right hand. And he doesn't want to see me now until the middle of September.
 
 

Di felt “a bit alienated” when she decided to go against her doctor’s advice to have an immediate...

Di felt “a bit alienated” when she decided to go against her doctor’s advice to have an immediate...

Age at interview: 52
Sex: Female
Age at diagnosis: 52
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The day that we received the results, I was told that I had DCIS and they explained very briefly what it was. That technically it was pre-cancerous which was a relief and in the next breath they said “So we’re going to offer you a mastectomy,” and that was appalling. Because you assume that if something was pre-cancerous, they can do what I believe they do with cervical cancer and you know just zap those cells.
 
And I must say the bottom of my world dropped out at that moment, so that was a very difficult moment, from having a month earlier felt completely clear of any risk at all to being offered a mastectomy for something that wasn’t even truly invasive cancer as far as they knew.
 
And in that fortnight I did a lot of research too on the Web about the condition and realised that it wasn’t cut and dried, that some people were beginning to ask whether surgery was necessary always but that the evidence wasn’t there, no one could actually answer my questions, even when I went back for the subsequent appointment I had loads and loads of questions but they could not be answered.
 
And that made it even more appalling to think I was going to have a mastectomy when I couldn’t make a clear choice because the answers that I needed - about how long would it take for this to develop, how dangerous are these cells, what is exactly the spread in my breast - none of those could be answered. They could only say “We have found what we’ve found, there may be more but we can’t tell until we’ve removed your breast and we can’t tell whether it’s invasive until we’ve removed your breast.” And that’s appalling and in fact I refused at that point to go ahead. I felt I’d been well railroaded into a surgical procedure and so I said I would wait. Which I don’t think was approved of really, I felt a bit alienated then because people don’t step off the tracks and I said that I would.
 
So at that point I said that I thought I needed thinking time and sort of set myself a target of getting to Christmas and beyond because that would have given me three or four months to do some more research to think things through to see if I could put my faith in any complementary strategies, to talk to people. And to see a counsellor because I felt absolutely floored by the diagnosis and I thought if I went into and prepared myself mentally then I could, because at that time I was talking about this in terms of, I was talking about mastectomy in terms of a mutilation and I couldn’t see it as, I objected to it being called a treatment, to me it wasn’t a treatment, it was almost the opposite.
 
Preferring to make decisions without professionals

Sometimes people prefer to make decisions on their own with little input from their doctors, because they feel competent enough to do so. This may happen when people know a lot about their long-term condition (e.g. diabetes) or when they are making decisions for other people, (for examples parents deciding whether to vaccinate their children may choose to do their own research) Sharing decision making can be difficult when people are making choices for relatives (see also ‘Decisions involving values and difficult personal choices’). People may experience guilt or worry about whether they were doing the right thing, especially if their choices could have serious consequences for people they love, for example relatives or unborn children.
 

She was asked to consent to her mother having a risky operation. She did not like having to do...

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She was asked to consent to her mother having a risky operation. She did not like having to do...

Age at interview: 37
Sex: Female
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 When I got there [ICU] I was called into the relatives' room by a doctor who explained pancreatitis to me in detail. And she told me that Mum was very, very ill and there was still a very high chance that she was going to die. Which really was a shock because I had seen her getting, what I thought better, and then to suddenly be told that again. 

 
Went back into the ICU to see Mum and a consultant wanted to speak to me and he took me into the office there. He explained that they thought that the enzymes from her pancreas had leaked into the cavity in her stomach and that they were destroying her stomach lining. They couldn't get to the affected area last week to operate but they were now going to try and remove the affected tissue. And if they couldn't remove it, then Mum would die. It would kill her. Then they asked me for consent for tracheotomy which they explained, this was a high risk procedure, that she could actually die from doing this procedure. But because I had seen how uncomfortable she was with the oxygen tube going down her throat, I knew that I had to take that risk, it was to make my Mum more comfortable. You know, even if it was a risk of losing her. So I gave permission. And that was really difficult knowing that you are giving permission for something that could effectively kill her really. When I got home I was really, really upset and phoned my husband and he came home from work. 
 
 

She had concerns about autism but after reading an independent research review she decided that MMR was the right decision for her son.

She had concerns about autism but after reading an independent research review she decided that MMR was the right decision for her son.

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I'm the leader with a kids' group, as a volunteer. I've been doing that for a number of years and over the course of that time I've seen a lot of, not a lot, but a few, fair few children with autistic spectrum disorders, invariably boys. Which I think was why I was especially concerned because obviously I had a son.   

So for me the decision was never not to vaccinate or not, it was a decision between triple jabs or single jabs. And I guess I just felt I really needed to be informed. Because you know that the GPs are going to tell you that it's, the right thing to do is to have the triple jab. Because that's what they have to do. And I just wanted some sort of more impartial view. So again we're lucky, we had another friend who's a hospital doctor. And he pointed me in the direction of a paper, which had been written. It's from Drugs and Therapeutics Bulletin, volume 41, number 4, April 2003, page 25. And it says at the top, 'The independent review from the consumers' association'. I'm not sure which consumers' association. But what it is, is a review of a lot of studies that have been done, looking for links between MMR and autism. 

And I read this and to summarise, one of the things it says is that autism has increased, or recorded incidences of autism have increased, you know, over the last ten or twenty years. The sort of line of autism has gone up like this. But at the time that the MMR jab was introduced, which I think was 1988, you might have expected the rate of increase to suddenly spike upwards like that. But the gist of this paper was that, although it was increasing, it would, wasn't increasing any more because of the MMR jabs. And it also suggested that there wasn't any link between numbers of people who reported autism whether they'd been vaccinated or not vaccinated. Again there didn't seem to be any connection. It seemed equally likely that you would report development of autism if you hadn't been vaccinated. So on the basis of this I think I tried to engage my scientific brain and think, 'Okay, you know, these are independent people. They haven't got a particular axe to grind here'. There are further risks associated with the single jabs, because your child is not immunised for a longer period of time and is therefore in slightly more danger themselves, but also posing a slightly greater risk to the rest of the population, particularly babies who haven't been immunised because they're younger. So with a slightly heavy heart I thought I'd go for the triple jab. If I hadn't read this, I'm not entirely sure what I would have done actually. But this was sufficient for me to make my mind up.
People may do their own research into their health condition by searching on the internet or talking to friends and relatives who they trust to advise them. For patients with long-term conditions, the internet can be a very useful source of information. People with chronic pain and diabetes described it as ‘helpful’ and said that it made the ‘latest’ information about their conditions available to them. Some people choose to check the information they find on the internet, by discussing it with their doctor.
 

Nancy checks the stories in the media about HRT with her doctor.

Nancy checks the stories in the media about HRT with her doctor.

Age at interview: 59
Sex: Female
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There were quite a few stories in the media about HRT and over time about it not being so good, about there being some health risks 

 
Yeah.
 
Were you aware of those stories?
 
Oh yeah, I read them all. Yeah.
 
And how did that make you feel about being on it?
 
Well, I wasn’t very happy about it. If I’d known there were alternative treatments for the bone density I probably would have preferred to switch to that. Because you have to really weigh risks up carefully I think. I certainly don’t base my judgement on what I read in the newspapers because there is some incredible rubbish written in newspapers. If I read a story in the paper I usually check it out against other things on the internet. I talk to people about it, I talk to, well I mean I would talk to the GP about it and the practice nurse. I also talk to friends who are in the medical profession and see what they think about it. So I wouldn’t just base a decision on something I’d read in the paper because I think most of the stories are there to sell papers really.
 
 

Paul uses the internet to get advice from other people with diabetes. He does not think that...

Paul uses the internet to get advice from other people with diabetes. He does not think that...

Age at interview: 52
Sex: Male
Age at diagnosis: 38
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 What about information. Where do you get your information about diabetes from? Because it is quite useful to have?

 
Internet. If you look probably in your local paper, you'll be a diabetic meeting. It is worth going along, to one of them. Or whatever, going along to many. Because there are loads of people there with diabetes at different levels and it's nice to have a chat to people who are at different levels, and how much it's affected their lives and what they do to control it. And how they have sort of sorted out and that's the best ways you will get it. 
 
Doctors can't tell you too much, because the doctors haven't got too much experience of it, unless they are a diabetic themselves. You go to diabetic nurses, they are trained, but they are only trained to a certain level. They can't, if you haven't got experience in that sort of case or whatever it is, then you won't get any sort of information on it. You've got to go and talk to a person who has got it. And you'll find if you, if you do go to a diabetic meeting it will open your eyes a lot. How it's affected people's lives. And how they have controlled it and how they advise you on things you can do, and what you can't do. And it, it is a good thing. The internet will give you a lot, but again I find, you're better off talking to somebody rather than reading it. 
 
You can buy all the books you like, but the books can't give you experience. Only a person telling you can give you the experience. How they've done it, and how they've got around it. So it's worth going to a diabetic. And they are all over the country. They're all in local papers, what dates they are, and where they are. Just give them a call and go along. There's loads of diabetic centres about.
 
 

Lawrence recommends finding out as much as possible and discussing information with the GP and...

Lawrence recommends finding out as much as possible and discussing information with the GP and...

Age at interview: 38
Sex: Male
Age at diagnosis: 37
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But the other thing I did was go on the internet, but I was searching in terms of topic, I didn't know any websites to go to, so I just searched by topic then in terms of, you know, diabetes and social diabetes, and sex with diabetes, and food, and looked through those and read those, and, and really while I might not have a specific book or a specific website to, to recommend, what I do recommend is just soak yourself with information, information, information. Because it helps you (a) in terms of making decisions about how you're going to conduct your life and (b) in terms of understanding the condition that you have, because if you don't understand it it'll be extremely difficult to, to get around it, life and it'd be extremely difficult to manage it, and, to comply with what the doctor tells you, because you might think the doctor's just, you know, giving you grief, but in effect he's just, you know, giving you the correct information.

 
But of course having said all of that it, it's up to you, really how you respond and how you deal with it. If you take it as a challenge and a positive tone yes but if, you can see it as a burden and you say, “Well I'm gonna adjust my life to accommodate the diabetes and hope for the worst and, you know, I've given myself five years to live and so forth.” Then you will have five years to live [laughs].
 
They went to great lengths, as I said between, between the doctor the dietician and, and the diabetes nurse, between the three of them they really gave me a thorough [laughs] update on what was going on. So I'd a lot of information then and of course, you know, whatever questions you come up with at the time, they're just a phone call away so I always used to phone them, “Oh what about this? And I've just thought of that.” So, they gave me a lot of information from the onset, it was really more of me absorbing what they were telling me. They also gave me a lot of literature, in terms of reading material, so, you know, you read for yourself the pamphlet - there's a standard pack that they give you - and you read through that and it is really very handy because it gives you all the information you want to know. And if you're not too sure you can always ask them.
 
But they gave me so much information that, you know, I was able to cope, from the beginning but it just depends. I think also how they presented it to me, helped me in that, you know, they said to me, “Look this is what you have and this is what can happen. You, you won't, you don't necessarily have to think you're going to die from it, you can live with it, you can manage it, but, you have to do a, b, c, d,” so, you know telling me that it's something I have but I can live with it and I can cope with it, straightaway gave me the hope to say, “Well okay so it's not as bad as it seems to be.”
 
People don’t always have the positive relationship with their doctors like the one just described by Nancy, and talk about ‘losing faith’ in health professionals after not being listened to. Patients described having both positive and negative experiences with doctors and nurses. This may have an impact on their feelings about attending appointments and sharing decision making with health professionals. 
 

Tina feels she is well understood by her GP and diabetes nurse and that they listen to her ideas.

Tina feels she is well understood by her GP and diabetes nurse and that they listen to her ideas.

Age at interview: 45
Sex: Female
Age at diagnosis: 33
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I was given a whole load of information which was too much to take in, definitely. And also, because I was quite angry about being now 'a diabetic', I felt, when I went to hospital I felt like a bit of a victim. So I actually stopped going for quite a long time. I had a bit of well' Some of the nurses, at one point, said, 'Oh, you know, this is Tina and she thinks she knows it all'. And that was on one visit, and I didn't think I knew it all at all, but I just, I was a bit probably a bit I my, you know my defences were up probably so I didn't, I stopped going.

But then I went to my doctors and my they have, you know, they hold diabetic like surgeries, I suppose, or clinics. And I that was I, that was much better, having more of a one-to-one relationship with a diabetic nurse who I got, you know, got to know so it's a bit better that way. Yeah. And that was so I personally, bought a few books on diabetes and you know, and now of course, you know, I look on the internet and on various sort of you know, because it's much more up-dated isn't it - everything's, you know, the latest whatever they have you know [laughs].

I think that my doctor is very understanding but without being sort of patronising. So I mean she also sometimes she actually asks me what I think should happen - how I think things should go, or you know, not what treatment I should be having, but how, you know, I feel about things - [which] is quite important, because you know you are the person with the problem.

And also my diabetic nurse you know, she very aware that, you know, obviously you know I am a diabetic, but she's very aware that I still work, that I have to fit in my family life, that I have to fit in things that crop up unexpectedly. And so she's very good sort of talking to me about that and giving me advice on how I could deal with different situations, but without again without being patronising you know which is quite nice.
 

He stopped attending a pain management clinic because he felt the health professionals were not...

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He stopped attending a pain management clinic because he felt the health professionals were not...

Age at interview: 43
Sex: Male
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They had a Pain Management Clinic at the local hospital but those were the ones that gave me the injections in the back which didn't help, they didn't seem to, well they did for a few days but that was it, they didn't seem to do anything. And they didn't seem to listen to what I was saying and that got frustrating. 

 
There seemed to be a protocol for back pain and we'll do this, this and this in this order and if it doesn't work we'll try something else but they never actually listened to what I was saying about the pain that I was having or the treatments they were giving. And so in the end I just stopped going because they weren't doing any good and it was more of an inconvenience in the end of having to go up there. 
 
What would you have liked them to have done?
 
I suppose if they had listened to me a bit more about what I was saying and the fact that I, you know, I've had these sort of TENS machines, tried before, I didn't get on with them. And some of the tablets they wanted to put me on I said I didn't want to take because they just made me so sleepy. “Oh well try them anyway”. And they gave them to me but I didn't bother taking them because I knew what they were like. But it was what they had to try on their list of, you know, their list of orders for treatment of back pain. 
 
And so that's why I got upset and cross because they wouldn't listen, you know, you'd said you'd tried something before and it, and it didn't help “Well try it again.” “Well the tablets make me really sleepy”, “Well try them again”. And you know that they do, so I just gave up going in the end and sort of just sorted things out between myself and my GP now. And she looks up the information and she gives me information that comes through so we tend to do it that way now.
Sometimes decisions are not shared because of a perceived reluctance on the part of the medical team.

People also said that they did not take part in making decisions about their health conditions because their doctors did not expect them to, or did not want them to. Others felt that doctors are not only best placed to make choices, but there are some decisions that should be the doctors’ responsibility.
 

According to Janice, doctors do not like it if you appear to be more knowledgeable than them. She...

According to Janice, doctors do not like it if you appear to be more knowledgeable than them. She...

Age at interview: 59
Sex: Female
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So I got this book, bought this book and it was very interesting and it said you could have tests, is it FSH tests or something and I thought, “Dare I go down to the GP and ask for that. I think I’ll, you know.” It’s far too overly educated here because you’ve got to adopt a certain role for certain GPs. You don’t want to go and give them the impression that you’re more knowledgeable than them. It’s like women don’t. Often in society you have to play a role that you’re not very clever. So you have to play to type don’t you so no, I didn’t. I thought well, it must be lovely if you’ve got that test. You’d have some confirmation one way or the other so I did read lots of interesting things but I couldn’t relate it to what I could do for myself. 
 
I would say in [city] there’s a culture of you often stay with the same GP unless you move. I would say in [city] not many people do shop around, it’s often, “Oh, better the devil you know”, and then you hear shock, horror stories of other GPs and you think, “I’d better stop with mine.” So that I would say in [city] currently, whether that changes with the new NHS Choices or Choose and Book [a service that allows you to choose your hospital or clinic and book an appointment with a specialist], people don’t often change GPs through wanting a different medication.
 
 

She left decisions about treatment for her ovarian cancer entirely to her doctor, whom she...

She left decisions about treatment for her ovarian cancer entirely to her doctor, whom she...

Age at interview: 59
Sex: Female
Age at diagnosis: 49
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 “What about treatment decisions, were you involved with your doctors in deciding what the treatments should be or was it just a case of them saying 'This is what you need'?”

 
Entirely up to them. I had no input at all into that. I don't know if I, I wouldn't have had any knowledge to be able to say 'yes' or 'no' to something and I wouldn't have had the courage to say 'no' to anything. Whatever he said to me I went along with, I trusted him implicitly. Still do. If he said to me now 'You need some chemo' I would discuss it with him and find out why, but I'd go with it, I would definitely go with it.
 
I don't think I personally couldn't have done it any differently, I would have to trust him a hundred percent to know what was best for me. I wouldn't, and if I didn't feel like that with him I wouldn't be able to be a patient of his, I would have found that very difficult, but straight away it was good and it worked - fortunately.
 
 

He felt that when his mother was nearing the end of her life, the 'medical' decisions he was...

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He felt that when his mother was nearing the end of her life, the 'medical' decisions he was...

Age at interview: 53
Sex: Female
Age at diagnosis: 61
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But it was you know as a family you're put through, in a time of real distress, some totally thoughtless kind of stuff, really thoughtless. I mean you could see by looking at her you know you're not going to want to resuscitate her for a start and what's all this for you know, who is it for all this stuff about antibiotics and drips and tissue, you know who is that for, whose benefit was it for? Was it for my mother's? I don't think it was for my mother's at all. It was to make sure that you know the doctors had done their bit.
 
And nobody thought about how to let her go in a reasonable way without it being a traumatic experience for all of us, which it was. No, so people don't think about that. I think when we saw the consultant he was quite horrified that we'd been made to make decisions about withdrawing antibiotics. I mean he felt that was a medical decision and that it was nothing to do with us and that we shouldn't have been put in that position, to make those sorts of decisions.
 
And you know so, but then he should be instructing his junior staff that it is a medical decision and it's not up for discussion. But at every point in hospital you have to made a decision, everything. You know it, and 'Are you in agreement with this?' 'Do you agree with that?' And some things you know, some things you don't so you ask the right question, you think you've asked, fortunately on the day we had the discussion about continuing antibiotics the deputy manager of the home was visiting us and said 'Do you want me to stay while you have this discussion?' Fortunately she had the presence of mind to ask all the right questions so that was really helpful.
 
But I don't, I think the medical profession could get their act together a bit better. I think if you're into hospice care and palliative care you understand that but in an acute hospital the idea is that you do everything possible to prolong life. And I don't think my mother was very well served by the medical profession at the end actually. Certainly no thought, no thought went into it.
 
The media can influence the way people think about medical advice. For example, the hype surrounding the research that falsely linked the MMR injection to autism made many parents think differently about immunisation. One woman who was thinking about whether or not to vaccinate her children said she wanted a doctor to tell her there was ‘no link’ between MMR and autism, whilst others said they were suspicious about why their doctors had advised a particular course of action.
 

They chose not to immunise their children and believed that doctors encourage vaccinating because...

They chose not to immunise their children and believed that doctors encourage vaccinating because...

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Mother' So there is information out there but it does mean trawling through the Net.

 
Father' You wouldn't ask your doctor because…
 
Mother' No.
 
Father' As far as we're concerned your doctors are paid by the pharmaceutical companies and they cannot give you an unbiased opinion or an unpolitical answer to any of the questions that you might raise, towards the safety of vaccination.
 
Mother' Yeah taking the decision not to vaccinate does require you to be very, very strong and I'd say to any parent who takes that decision, “You're not going to get an easy ride from the medical profession”. And I also am aware that there are some practices in some parts of the country that won't register unvaccinated children. So that's another…
 
Father' And if you refuse, they strike them off their lists because it's bringing their vaccination levels down, which affects their targets for money that's given to them by the pharmaceutical companies.
 
 

Believes that when you want expert advice you should talk to the professionals who have spent years training and are qualified to give you guidance.

Believes that when you want expert advice you should talk to the professionals who have spent years training and are qualified to give you guidance.

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So I think it is very, very, very important here and everywhere else to educate people, to inform them. Not misinform them, which is what the media usually does. If you buy a tabloid, they just care about selling papers, and the best way to sell them is to shout horrible stories, you know, and, and pick the one in a million case where something went wrong, instead of stressing that the other 999,999 actually didn't have any problems and were protected, yes. The media are always using sensation to sell. But on the other hand you are the parent, you have your child to look after and you want the best for your child. You shouldn't listen to sources of information which are not the right ones. And I think if, if we don't know much about something, we should go and ask the right people. There's always your GP, your health care or a nurse that can give you the information you require, can actually, not just tell it to you but give you access to documentation, where you can make your mind up by yourself without just listening to it on TV or on tabloids. So I think it's very important to educate people the right way, to give them the proper information.
 

Had found the MMR decision for her child really difficult. She was grateful that her own, trusted...

Had found the MMR decision for her child really difficult. She was grateful that her own, trusted...

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We had no problem with her having the other immunisations, the normal ones, but the MMR was quite an issue obviously, as it was for everybody. But even more so really because [our daughter] had had, she'd always had viruses and ear infections and then she started with bowel problems. And the decision was just a dreadful one to make for that. And then we decided eventually after much anguish, listened to what was on the television, what was being said, that we would take her to have measles only done, privately. So we went to a clinic in Liverpool, and by this time she was coming up to 2½ and we hadn't had the first MMR done yet. So we took her to the clinic in Liverpool and when we got there they wouldn't do the measles injection because she'd had antibiotics the previous week for something else. And we didn't know that she couldn't have the measles injection. Anyway they sent us packing, sent us home. 
 
And we went to see our own doctor who, but, you know, he, who persuaded us and staked his career on the fact that this MMR wouldn't harm our little girl. And he said he'd even give her the injection himself, just to prove how confident he was in it. And he hasn't given an injection to a child for a long time. Anyway he gave her, gave it to her there and then before we could change our minds or have time to think about it. And we were just, in just such a state. I couldn't tell you how worried we were. 
 
And these health professionals, I'm trying not to say the names, they were sort of, they've got no reason to say otherwise. If they for one minute thought that there would be a problem with MMR it's more than their careers are worth to push me to give it to my little girl. And in the end that's where I thought, “Well” because my doctor who is a family friend and, as well, I just knew he wouldn't, he would not have staked his career on it. And, you know, I mean he just said, “Come on, give her here, I'm going to do it now”. And, and he did it. And it was, and it was talking to them really and realising that they wouldn't say those things if they didn't truly believe them, you know.
 
So you trusted your doctor?
 
Oh, yes, yes, I trust him with anything. And I hadn't actually spoken to him himself, we went over another issue with her. And it was, I thought, “Oh, I should have spoken to him long since really” because he was that last bit of reassurance that we needed, you know. And it was a good thing, it was, you know, the best thing we did.
 
People were sometimes perplexed when their doctors invited them to take responsibility for a decision when the doctors seemed to already have a clear idea about which treatment would be best. In the clip below, a woman describes her sense that there was a sigh of relief when she decided to have a hysterectomy.
 

When faced with the choice to have a hysterectomy or chemotherapy to treat ovarian cancer doctors...

When faced with the choice to have a hysterectomy or chemotherapy to treat ovarian cancer doctors...

Age at interview: 41
Sex: Female
Age at diagnosis: 38
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 The hysterectomy, I remember we were in this room with the surgeon and the oncology team and, because all this happened at the time when there was a lot of news reports and cases brought against gynaecologists, and he was saying about "well this is the chemotherapy you need and, you know, you might want to look at a hysterectomy," but it was the way it's put "you might want to look at a hysterectomy." And then, you know, you dig a big deeper "Okay well what's the best way of walking away from this? So if it's going to be awful and sheer hell for a year as a family, how are we going to, how am I going to create the best chances of us walking away from it all?" 

 
And, you know, it's like "Well you don't have to do it but, you know, to have the hysterectomy and to lose the next ovary would probably be the best thing, but the choice is yours." And there was a reluctance to turn round and say it purely because there was all this litigation in the news at the time. And so it's like “okay well I really think the only way round it is to have the hysterectomy” and as soon as I said "Yes we'll have a hysterectomy," they all went “phew”, you know, because it was just so bizarre, you could see the relief, it's like okay well that is the best decision.
 
These patients explained that they chose not to take a doctor’s recommendation for treatment because they did not want to experience nasty side effects or put themselves at risk of harm. In some cases, patients turned to complementary medicine instead.
 

Eddie developed breathing problems and was sure they were caused by the medication he was taking...

Eddie developed breathing problems and was sure they were caused by the medication he was taking...

Age at interview: 83
Sex: Male
Age at diagnosis: 80
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I can’t remember exactly when the walking became affected. The doctor at the hospital was conscious of the fact that my walking wasn’t as good as it should be and he noticed it more than I did to start with. And the effect of the Sinemet plus, I think it was, the effect of that was it improved my walking and also my hand wasn’t shaking so much, so it was being effective. So in the first time it didn’t consciously affect my breathing but he wanted he wanted to increase the dosage because he didn’t think the dosage was strong enough to do the job properly so I had to take an extra tablet, sixty two point five. And when I started taking that that’s when I started suffering from the breathing problem.
 
Can you describe the breathing problem?
 
Yes, I would wake up in the night and you breathe through your nose normally and I reached the situation where breathing through my nose was very difficult and the worst thing I could do was sneeze because it increases the blood pressure and so I got the feeling with my nose being blocked up and the effect the effect was very unpleasant.
 
And so what was the next thing you do you did? You told I think you told me you went back to the doctor.
 
I stopped taking the Sinemet and.
 
Had the doctor told you that it was definitely caused by the Sinemet?
 
I had a after I went back to the hospital, the second appointment, but he didn’t seem too concerned about the breathing effect he was more concerned about the effect by not taking the Sinemet and doing harm to myself and so he suggested I should go back and have a second try. So I thought, “Well, with respect to the medical profession the doctor I’m prepared to do that.” So I went back and I had and I had a second go but the effect was worse than the first time so I wrote a letter to the local doctor saying that I was I wasn’t prepared to put up with horrific breathing problems. I would rather put up with the problem with my hand shaking than the breathing so he wrote me a letter back saying that he respected my viewpoint which I which I had a right to choose for myself.
 
 

She tries to “avoid conventional medicines as much as possible” and prefers to try homeopathy.

She tries to “avoid conventional medicines as much as possible” and prefers to try homeopathy.

Age at interview: 52
Sex: Female
Age at diagnosis: 52
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 I've tried to avoid conventional medicines as much as possible in my adult life. I'll always try homeopathic treatment first, and in fact in many cases it's been very successful. I rang through to my homeopath straight away and told her that I had high blood pressure and asked could she help. Homeopathic treatment doesn't just work on the bit, the problem that you have at the time; it works on the whole, the whole body, the whole being, the whole person.

 
And so, we had a long conversation about how things were going. She had a good idea about what she wanted to give me but she needed to consult her books and then she just handed over the remedy, which is in liquid form, and I take it for 3 weeks and then report back. I also went to see a canesiologist in order to, who'd been highly recommended and her treatment worked very much on the blood pressure. It's a method whereby the practitioner asks questions to your body that replies by a symptom of signs to her and then she works on what she is told. It can be by some kind of manipulative method or it can be by exercises, all manners of things actually. The canesiology it's very interesting, I don't really feel I fully understand how it works. But I certainly know that after the first session I mentally felt very, very different and very much better.
 
 

She decided to take a food supplement instead of HRT, which her doctor had recommended, because...

She decided to take a food supplement instead of HRT, which her doctor had recommended, because...

Age at interview: 48
Sex: Female
Age at diagnosis: 41
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 And I think I drove the doctors mad, I must have asked about five different doctors' 'Is it going to be all right, me having HRT?' 'Is it going to bring the cancer back?' 'Is it going to be safe?' All sorts of things and they all said 'You must have it because of your bones' and at the time 'because of your heart.' But, and I took HRT for two years and then I got a very uneasy feeling, I just felt I'd been through cancer once and I didn't want to put myself in the firing line for having another form of cancer. 

And so having met a rep at a [nursing] study day I went on, and he was telling me about another alternative, I went down that line rather than carrying on with the HRT. And that, that suited me fine, and I still take, it's just a food supplement, but I feel much happier taking that rather than running the risk of being on HRT, however small that is.

 
Conclusion

In order for shared decision making to be successful, both patients and doctors need to take part. However, patients may not want to participate choosing instead to allow doctors to make the decisions. On the other hand, they may prefer to minimise their doctor’s input, in some cases even excluding him/her entirely. Those recently diagnosed with a life-threatening illness may feel too shocked to make choices, whereas those with long-term chronic conditions may become sufficiently informed and educated to take on the responsibility of decision making. Communication between doctors and patients is vital in ensuring successful shared decision making. This will be further discussed in ‘What can go wrong when decisions are not shared’. 


Last reviewed February 2016
Last updated February 2014
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